I have an Instagram page called @addisonsadvocate, be sure to head over there and check it out! Going to start hosting Instagram Lives in the coming weeks with many of you to create a place for us to share our stories with each other in hopes of providing hope and encouraging the community. See you over there!
You Saved My Life! I am living with this right now! I would not bee here if it were not for you! I am now Stage 3 the most aggressive version it's been 8 months since the day I found out. A month ago I didn't have Diabetes I am now a full type one diabetic because of My Addison's Disease severity.
As a current nursing student I wanted to share that this disease is covered over and over again, its on so many exams and boards. I'm just so shocked that such a heavily taught/studied disease was missed by so many medical professionals around you.
Heavily taught? Where? I have it and that has utterly been so very, very far from the case from the case. It's horrific how little if nothing they know and what they do and do teach is 50 years old and crude at best.
I have had it since I was 13 years old. Did not find out until I was 38 and the level of cortisol was 1. The Lord Jesus kept me from dying young and now I have a great family.
Reading through these comments ,I wonder how many people die undiagnosed ? Perhaps it is not as rare as people think. What a wonderful video,thankyou.💖✨️
Hi I have Addison's. I was diagnosed in my 40's my situation was similar to yours. I'm now 64 years old. I'm in Stage 4 Adrenal Failure. I'm on 7 5mg Hydrocortisols in the morning and 4 in the afternoon. I receive two injections a month also. I'm so sorry for your journey. I'm from a small town in North Carolina and until I watched your video I felt no one in the universe had Addison's but me. Thanks for sharing.
This is a great story. I was in the Marines at the time of my diagnosis. I spent 6 months in other dealing with addisonian crisis and they just kept telling me I was dehydrated. It wasn’t until I almost died while on predeployment leave that a civilian doctor was able to find out I actually had addisons disease.
The worst part of this disease is that the others see you walking and doing you daily stuff think that you are okay and if you got tired or sleep all day think that you are just lazy, they don't know that we are fighting to do the most simple things 😢
@@VishalKumar-xl2xd oooh 🥺 hope things get better for you, I actually passed that period and I'm good now, so don't be upset, visit a doctor, take care of yourself every thing will be alright 🌸
@@hafsabouchekouk8777 may I know how old are you ?? I'm in my mid twenties doing a job but couldn't be able to do good struggling to have a good physice People don't understand but make fun of me, both mentally and physically I'm struggling 😭😞 I'm going to the doctor.
I have secondary adrenal insufficiency I basically had radiotherapy around 2 years ago to treat a brain tumour and was prescribed a very strong steroid called Dexamethazone and once I’d weaned off this my adrenal glands totally shut down with a cortisol level of just 22! I was actually in hospital last night for the emergency hydrocortisone injection and placed on a drip due to having adrenal crisis symptoms the salt cravings and constant dry mouth are a pain and the fatigue I feel is on another level I’m 36 but feel 90! Amazing you’ve done this video as it is so rare and an illness you never heard spoken about sending well wishes!
Yes your correct as the same here with just one injection allergic or what ever did me in very badly for 3 years?a little better but, five years ago I had 1 injection of Dexamethasone for an inflammation. went through hell with even some Osteoporosis in a very healthy strong bones as it kicked in so fast but that went away broozing like a 80 year old. some recovery but still waking like grave feeling shaking. I don't want to depend on man made hormones because my body and mind rejects it as my belief was stolen. to many miss treating Endocrinologist sorry i can;t travel or trust. Suppose i could go to Missouri but dought it for some reject man made hormones.
I'm overwhelmed by the support of all of you! Addison's Disease is a super rare disease and not a lot of people know about it but together we can change that. Please share this video with friends and family so that we can raise awareness and ultimately save lives!
Anyone's with addisons disease can relate but mine didn't get that bad 2 questions 1: Are you on steroid pills still and if so you really should get a insulin pump for cortisol they are really hard to get but they will help you so much and 2: I am wondering how you can believe in God when you have to rely so much on doctors? I had a similar story but I am not religious so I think science is the key.
@@PhotoPrimierePro Hey there! Thanks for watching! To answer your questions, yes I am still on steroid pills 3x a day! I heard that pumps are a thing but I'm a pretty active person so the thought of having to worry about a pump attached to me freaks me out as well as it seems somewhat inconvenient for my lifestyle. I could be wrong though! Who knows, one day I might look into that option! And in regards to your second question, before getting diagnosed I didn't necessarily lose my faith, rather I became complacent in my relationship with God. I was too sick to even try and pursue God. It's one of those things where when you're in the heat of the moment, it's easy to get tunnel vision and lose sight of the total picture. When I look back on the days before getting diagnosed I see God's hand all over my story. It was hard to see at the time but I know he was there all along. I believe that God gave my doctors supernatural wisdom to treat and properly diagnose me when they actually did. Faith is "the assurance of things hoped for, and the conviction of things not seen." The short answer is, it's pure faith.
General doctors have fallen for the lie that "happy pills" are a good substitute for real medicine. Not only is it sloppy diagnosing, but those psychiatric drugs are also more dangerous than most people realize. I'm so glad you made it to a real diagnosis and that you're still here! It's so true what you said about advocating for yourself. Thank you for making this video.
Loved seeing your video; I was diagnosed almost 66 years ago at the age of 10; I've had a wonderful life and done everything I wanted to do; wishing you a long and happy life also.
Wow!! That is so incredibly encouraging to hear. I hope to lead as healthy and active life as you have! Thank you so much for sharing, that gives me a lot of hope!
@Samire Mamedova hey Samire! I’ve been told that the dark skin associated with Addisons fades over time once you’re put on steroids but in my own experience I haven’t gotten any lighter or any darker since being put on medication 2 years ago. It’s one of the few perks of this disease! Hope you’re well!
I just got diagnosed with Addison's Disease a month ago after being in and out of the hospital for the past 4 years. I have had 3 near death experiences in the last 6 months and have lost an extreme amount of weight (causing me to be diagnosed with unintentional anorexia.) It is so relieving to finally have an answer and I am grateful to be alive. Listening to your story made me feel less alone and showed me that I have so much more time to my life than I thought I did! thank you (:
I'm a med student and I can't believe that's how they approached u on your first consult.. thank u for sharing your story. I'll make sure to raise awareness about this and be aware myself. You are a miracle. thank God
Same for me. Oh your depressed. It's all in your head. Go for a psyche eval. When I could hardly walk into office. I'll never forgive them. I'm a RN. The only way I've come up with this diagnosis is from me. New Drs. Hopefully this time. Tired of being tired.
the doctor who prescribed xanax should of been struck off ... you are a miracle god saved you alright you are a very special human being , loved your video
I have type 1, hypothyroidism and Addisons. Diagnosed 1 year after the other. I had a doctor blow me off as well and he luckily recognized he could have killed me, then went back for further education. Your story is inspiring. I hope the best for you and that God blesses you abundantly in this new year.
People don’t understand medical trauma . Or the emotions we go through and how it affects our mental health . My heart goes out tk young people who are going through health issues hang in there everyone who reads this!
Thank you for sharing!! I’m sorry the doctors gaslight us all so much with “anxiety & depression”! Completely neglecting real investigative research to find the problem and treatment! I to am experiencing those same mobility problems and more. I am currently going through autoimmune testing so I don’t know exactly what I have yet. I’m so happy you are alive, got treatment, and live a fulfilling life! Praise the Lord!
I have Addison's. I was a very, very healthy person until I was around 35. Suddenly, I began to feel off, then sick, then deadly ill. It was literally everything that you described. They did every test on the planet and couldn't find anything. Finally, they sent me to the Mayo Clinic, where two months later, they realized it was Addisons. Looking back, they diagnosed me with all of the things that frequently mimic Addison's; Chronic Fatigue Syndrome, Fibromyalgia and when me skin started turning dark in my elbows and wrists, etc, they diagnosed me with something called Dowling Degos. It has been a journey. I really resonated with everything that you said. Thank you for filming this.
Same they actually found mine thanks to a gallbladder surgery released the monster♡ showed what I was actually going through they actually said ptsd,depression anxiety all that. ♡
@@lordvader2681 It is the most frustrating season of your life. I am so happy that you finally got an answer. Knowing the problem makes it completely manageable.
Jesus isn't done with you yet--he's got big plans for you! Thank you for giving God the glory. I am crying through your video. Thank you so much for sharing your story. My son's best friend (who is like a second son to me) had every single symptom you described and today he was finally diagnosed with Addisons disease. He sent this video out today to the people close to him to spread the word. He is 32 and almost died a few months ago because the doctors couldn't figure out what was going on. God bless you. Stay strong! See, even 2 years later your message is reaching the people who need to hear it.
I could cry listening to this. This was my life before my addisons diagnosis. I was told for 3 years after symptoms started that I was just anxious. The story about the shower hit home for me. I would just lay in the shower floor because I couldn’t get my heart to slow down enough to stand
Same😢 I’ve had to sit in the shower for years, had multiple visits which I now know were crisis at the ER, and Addison’s was only found bc I pushed the internist, and fought for my life/diagnosis. I basically diagnosed myself. I’ve now spent the past 6 months waiting for an endo, with an interest who keeps saying “it’s too complicated for me, so wait for the endo” I lost over 38 pounds, and neither my doctor or internist are taking it as seriously as they should. I’m on HC, but the other symptoms are still a huge issue. It’s a frustrating process 😣
Wow! I’ve had ADDISONS for 16 yrs … it’s horrid… had another crisis today! As I’ve got older they happen quick fast, Out ! Your doing a wonderful job! No doctors here understand, or know about it! I’ve been in numerous occasions in hospital, last experience they nearly killed me, and I had a silent crisis… worst ever as you can talk,move so you look a sleep…..still suffering pts… 🦋🦋🦋🦋
your correct it is horrid! Dexamethasone took 5 years from my life and hoping for a full recovery of what it did to my adrenal and induced cushings syndrome. Doctors know very little and Endocr- don't know much better.
My daughter was diagnosed in 2017 at 18. It took 4 ER visits, two ambulance rides, multiple doctors visits, therapist visits and her going to an eating disorder clinic (told by doctors she was an anorexic) to be diagnosed.
It's tragic that so many of us are misdiagnosed with things like that. Anxiety, anorexia, thyroid issues etc. So glad your daughter was properly diagnosed!
I’m tearing up , I belive every word you’re saying . I started having my health ailments when I was 21 . Been down hill since then . 34 now I went through so many trials and tribulations either misdiagnosis and being brushed off while knowing I’m slowly dieing . I have a long story but the best part out of all of my pain and suffering is I found Jesus Christ our lord and Savion whom saved me from the pit of hell . He is my rock and the reassurance that I know our bodies will return to dust but my soul will spend eternity with our Heavenly Father . Me and you both will gain a new body no more pain and no more suffering a glorified body! What a day that will be . Listening to old hymns of the church really lifts my spirit up when I am in a flare up . God bless you brother!
Thanks for the video. My experience was much more gradual. For 10 years I struggled with recovering from exercise - having to go to bed like I had a cold. It gradually got worse until I stopped exercising all together. Luckily my bloods showed i had hypothyroidism. When that medication didn’t work my wife pushed me to see an endocrinologist who diagnosed me. I have never had a crisis but now have a 3rd autoimmune condition. Grateful that it all worked out but have had doctors tell me that I couldn’t have had the condition for 10 years. There is so much they don’t know. Your comment about looking after yourself is so true.
1 Injection high dose of Dexamethasone 5 years ago for inflamation from a product. my adrenal glands all most shut down and death like feelings vertigo dark emotions and places no one would wish on their worse enemy. 5 years ago and still waking grave feeling taking 2 hours to get moving but shaking is all most gone. induced Cushings Syndrome in a healthy person. afraid to take steroid hydrocortisone and Endocrinologist- don't know a good dose would help or kill me. I am not going to go that far unless they can make sure. Missouri treatment would be best . Dexamethasone really messed up my frontal lobe and still feel like a zoombie confused but gradually it might get better but, my Doctor can't be sure100% or even at all.
@@christinasaucier6514 yes but once you have surgery to fix it then you don’t have enough cortisol and you have secondary adrenal insufficiency. That’s what I have right now.
Hey man youre not alone. I was diagnosed with Addisons disease and POTS syndrome in 2013. I graduated high school and endured the same effects and sypmtoms. Its been ten years with it and its been a very hard road with this illness. Tons of hospital visits and adrenal crisis. Doctor didnt understand what i had at first so they tought i was acting sick to get out of school. Im 28 now and still have very tough days. I understand your pain. Thank you for your video.
Levi, thank you so much for posting your story on UA-cam. This is how we learn. At age 68, my sister was diagnosed with Addison Disease. Hearing your story, my sister went through the same thing. My sisters age and she was overweight, unfortunately, she died of Addison's disease in December 2022 at age 69. I cried watching your video and listening to your story. The take away for me is, when and if I hear about someone who have the same symptoms as you and my sister, I will mention this disease and urge them to get proper testing done. The problem with the much of the medical community is, they think you are a drug addict trying to get drugs instead of listening to what you have to say. I hear this constantly from people seeking medical help. Yes, Jesus had your back Levi, and you will continue to be blessed. Thank you again for your story.
I’m there now & saw Endocrinologist first time last week , I’ve felt like I’m dying often & mornings are the worst I’m so scared thanks for sharing this
Madeline thank you so much that's so encouraging! I've come to the realization that our stories are so powerful and are so worthy of being told! So keep sharing yours! Wishing you all the best and thanks for watching!
I’m more amazed at the number of doctors who shrug off the symptoms, especially in women! I had symptoms for decades. At 23, the first doctor suspected Addison’s, but instead listed it as “dysautonomia function” and sent me to a cardiologist who agreed with the diagnosis adding syncope (passing out). It wasn’t until age 48 with my potassium level at 2 (deadly, btw) I was finally diagnosed. I’d been told mitral valve prolapse, which can result from damage to the heart when you have untreated Addisons. I have a strong suspicion Addisons is hugely under diagnosed and it’s symptoms written off as “emotional disorder” or less kindly, hypochondria.
Hi Levi. I have Primary Addison's. I was diagnosed in March 2013. I lost 70 pounds in 4 months. I went from a size 18 to 2. I was found covered in bile, rushed to the ER. I was brought up to ICU and I was 2 points away from being in a coma. Our stories are so very similar. Thank you for sharing.
Your story brought tears to my eyes. I went through an almost IDENTICAL experience. I almost died. People thought I was anorexic and a tanning addict. I lost 3 jobs and mind you, prior to getting sick, I was a huge athlete. I thought I was going crazy!!!! I have lived with Addisons disease now, for over 28 years. At times, it is still a science experiment especially when it comes to working out, playing sports, dealing with sodium depletion from sweating and taking care of myself. I am so happy you are better now, and healing!
Hello, I would very much like to get some pointers form you on managing your activities and medications for this. I too was very athletic prior to this health condition and now I have difficulty doing what I enjoy and not having health issues.
I know this comment is a year old but before I was diagnosed, the Dr.s also thought I was anorexic and sent me to a psychologist. I ended up twice in the hospital before I was diagnosed. If it wasnt for the tanned skin I think I would have probably died. I was on death's door. Couldn't walk without puking and my heart raced. Couldn't do anything really. I am so thankful for the Dr that diagnosed me. He saved my life. I'm 43 now was diagnosed at 18
I’m only 10 minutes into your video and I’ve been crying the last 8 minutes! Your story hits so close to home I’m finishing your sentences before you say them. It’s like I’m reliving the almost two years undiagnosed Addison’s all over again. Just hearing someone else go through the same things I did is heartbreaking but I also have a sense of relief that there’s others out there who actually get it! Thank you so much for sharing your story. It’s been 9 years since falling into a coma due to Addison’s being undiagnosed for so long. Its completely changed my life and has opened up doors to more health issues to the point where I’m no longer able to work (I was working full time in a homeless shelter and street outreach) but its lead me to the one thing I’ve been in need of and was searching for God’s Grace, Truth and Love. Legit, wouldn’t change anything because now I have Jesus so I’m definitely okay with how my life has turned out! Sending so much love and a ton of Blessings from Canada ♥️
Wow, i can't imagine going 2 years in that state. Mine was only 3 months and i felt like i couldn't do even a day more. There are others out there to get it! I completely understand. Blessings to you!! Take care of yourself!
@@manikamia9687please can you tell me if you lost muscle mass as well as strength? I am struggling for 4 plus months have gotten very weak and desperate. I have seen many doctors and many tests are supposed normal it makes no sense... until now I see these videos and maybe have something to ask for.
please can you tell me if you lost muscle mass as well as strength? I am struggling for 4 plus months have gotten very weak and desperate. I have seen many doctors and many tests are supposed normal it makes no sense... until now I see these videos and maybe have something to ask for.
I am from Bangladesh, and I have Addison's disease and diabetes also, i am 40 years old, now I am taking cotson 10. Thank you very much for sharing your story
Hi!!! I have PAI since 2008, Today I”m 43 years old. Just as you said I’m a surviver, I had my three babys without knowing that I was sick, I don’t know how I did it.... three c-section without cortisol.. wow!!! Jesus really loves me. I have good days and bad days but mostly good days. I fight everyday with the fatigue, but I make exercise 5 times a week, have a work and try to have a normal life. Thanks for your videos.
Oh my goodness. Your life was truly spared. I cannot even come close to imagining the pain you were going through. You're so resilient! Love that you're not letting it get the best of you. I hope to be like that too. Wishing you all the best, thanks for watching!
Hi Marie, I also had my daughter via c section. Prior to being diagnosed. Without cortisol etc but I have noticed after I gave a birth to a child my health deteriorated.
I have all of this stuff happening right now. I’ve been sick for 4 years. Last trip to dr they gave me antidepressants. I can’t eat any food. I can’t sleep. I can’t work. I’m not allowed to drive. I can’t think. Diagnosed with “gut” issues. Sibo. Diverticulosis (diagnosed with colonoscopy). Pots. Low bp. Vasovagal syncope. Underweight. Ibd. Leaky blood brain barrier. Currently going to die while waiting for an mri. If I get the energy to roll out of bed I’ll go to the er. I have a deep disrespect for medical “professionals”. Just giving me fluids and telling me to wait 6 months for an mri. I’ve never been tested for addisions. I’ve been in the ambulance from blacking out in public 3 times in the last year. Ontarios medical system is a joke. It’s 700 bucks for an mri just across the border. So I asked to pay to have it done here…. No no no. You can’t pay. Wait to die. Thanks “pensioner”. (That’s a drone who only has a job for a pension). I see fat ppl eating 700 dollars worth of Uber eats a month…. But I “can’t” spend 700 bucks to get an mri. Shit I’d spend whatever I could get. Or at least do more then just basic tests.
Wow just watched your video . My 19 yr old daughter Emma was diagnosed with Addison’s almost one year ago today. Majority of doctors were convinced she had an eating disorder. Even as she lay in the hospital as an inpatient and they were slowly bringing her sodium level up , a nurse told us Emma should be transferred to s local hospital with a psych ward. It took 6 mos for a diagnosis when I finally mentioned to one of the docs at the hospital on day five how I notice her skin is really dark , did they test . In your video when you talk about how you felt after the diagnosis. We know exactly what that was like, all those months of 40 lb weight loss. No energy, passing out , unable to even make it more the s few hrs at school her SR year . Watching my softball varsity starter not even able to walk for her SR pictures … the diagnosis saved her life and yes her faith in Christ . He was there each step of the way. She is doing great now living life , Freshman in College she’s a beautiful young lady with a beautiful future ! Thank you for sharing!
Wow, thanks for sharing Cindy! I'm so glad she's doing well now! It's crazy how doctors' initial diagnosis for women seems to be an eating disorder or anxiety. It really shows how unknown Addison's still is. I'm glad you mentioned the tan! That's how I was diagnosed too. Hope she continues to stay healthy and lead a normal life!
Dear Levi, Thank you Levi for creating this video. My son and l live in Australia. He is 17 and was diagnosed with Addison's Disease 5 days ago. Thankfully the doctors got the diagnosis right after 2 weeks as l felt like my beautiful, strong, healthy son was literally wasting away in front of my eyes. I have never been so worried in my life, l was scared, his symptoms were unusual so l knew the cause must be also. He had been vomiting most mornings for two weeks, was extremely fatigued, had lost a lot of weight and upon his second admission to the Emergency Department, he had to put in a wheelchair. The doctors did blood tests, chest xray, ultrasound, MRI of his brain. First diagnosis was gastroenteritis, l said that l didn't believe it was that, then CBS, cyclical vomiting syndrome and after few days on a drip he was sent home with anti-nausea medication. This l also did not believe. Within a week l took him back as he was getting so weak he struggled to stand. He was put back on a drip with continued anti-nausea medication. I kept saying to the doctors that his colour was not right. We had spent a month in Northern Australia and Indonesia but that by this stage was 2 months ago and l was saying that his tan should have faded more, as mine had. Finally the diagnosis. It was a relief as you said, but we were devastated, we still are as it is not even a week. It is amazing though how quickly the hormone replacement began to work. Sean my son had a dream to join the airforce and become a fast jet pilot, a high aspiration. This dream appears to be shattered. As his mother l want to console him but my words do little. I think your video will help him to not feel so alone with this rare disease. I will certainly be reading the comments from others. Regards, Lisa
Dang. I just wrote a huge comment and it was mostly deleted. I'll keep this short: I dated a woman for 5 years with Addison's. Make sure to keep your pills in 2 different places while you're traveling. We had our car broken into on a hike and they stole her meds...and she was crashing... luckily we had spares in my backpack. Also save up extra meds in case of a disaster. She's had it for 12 years and has lived a very healthy life since diagnosed. Every few years her body will change and things will get weird, but it usually only lasts a month or two while they recalibrate the meds. I hope many good things for you on your journey! Thanks for sharing your story. Always important to seek out the doctors who will actually take the time to listen to you. So important!
That's a really good tip, I can't imagine not having access to my meds when I need them. Definitely a scary situation! Hoping to have a smooth journey, not looking to make a trip back to the hospital anytime soon. Thanks for the comment man! Appreciate the support!!
I have addisons... and had the same experience with doctors not listening to the point I died... I was 23 and a new mum. I fight everyday xxx thank you for this video xxx
I met a young patient who had Addison's. Her Mom was a huge advocate for her. Her Mom is a nurse. I'm convinced she saved her daughter's life by seeking the cause of her daughter's illness. God bless you.
I was diagnosed 2 years ago in a full addisons crisis. I battle severe hypoglycemia with it and am slowly getting on track with it. Its definately a challenge.
I think this is my situation. I'm extremely hypoglycemic cortisol was 6.2 waiting endo appointment. What are your symtoms how do you know what's low sugar or addisons symtoms
I’ve had Addison’s for about 15 years. It took months to get diagnosed. I asked the doctor to check cortisol because my nails had dark vertical strips. I read that somewhere. That helped the doctor diagnose me. All the best to you. Praise Jesus.
It is crazy how close our story is!! It took months for a Dr. to take me seriously. I finally put all my symptoms in the internet and addisons came up. I had every single symptom. I cried right then and there because I finally knew what was wrong with me. I had to wait a month before I could get in to the dr. so I went to the emergency room and I told them what I think I have. They got me in two weeks earlier but still didn't do the tests to show if I had it. when my dr. appoint came I could barely talk or walk. It took another week and a half to get blood results back. They got them and had me admitted. I was so close to dead. It was so frustrating to find some one to take me seriously. I had to be an advocate for myself.
Sad that that's the way these things go. You're not taken seriously until it's too late. Same with me, I described my symptoms to my sister and she googled it and "self diagnosed" me with Addisons almost a month before I was officially diagnosed.
Thank you for this video. I was just diagnosed today with Addison's disease. I also have Multiple Sclerosis so the fatigue was unreal. At first, I was so confused and shocked it up to my MS but deep down I knew something was not right and felt different especially my 80/53. Thanks again for this video!Jesus saves lives, prayers sent your way... 🙏 🙌
Hey Levi! I too have Addison’s Disease and am blown away by the similarities in our stories. From crawling into the ER on all fours to the doctor noticing my tan, the misdiagnosis and eating salt from a spoon. Thank you for sharing your story! So glad that they figured it all out and that you’re healthy!
It's wild because I am a black woman and I am quite fair most of the year. But, I was holding a tan like never before. But, I lived in FL at the time. Hopped in a train to get to MD because my son swore Hopkins was where I needed to be. I did not crawl in theER. I stepped lightly and then fell and hit my head right there in there ER. Two years later - I am still here.
Thank you for sharing. I’ve had Addison’s disease for 17 years. The fatigue is debilitating. Even once you have it under control. After a cold the fatigue i feel after is the worst part and that’s even after increasing my meds.
God bless you young man. I’m newly diagnosed with Secondary Adrenal Insufficiency - mid life. However, in hindsight I’ve been living with the symptoms of the illness for many years that have gone over looked. I now treat with hydrocortisone as well, but still having difficulties with SOB, so still working closely with my endo, but like Levi I’m so grateful, try not to complain bcuz someone else didn’t receive the dx that they can pretty much be okay with medication. I pretty much dx myself which got me to a dr. bcuz my symptoms over 20 years was never connected by doctors treating individual symptoms. Best of health to us all.
Hi Levi, just been diagnosed today with Addison's disease. Felt a bit in despair, came across your youtube video and it was so incredible and my approach has changed. Thank you Levi.
My daughter was recently diagnosed with Addison’s at the age of 32. Thank you for sharing this as it has helped her to know others have it too. God bless
Wow, hope your daughter is now doing well!! It's easy to feel alone when you see that 1 in 100,000 number but I hope she knows there's more of us than she might think!
After a decade of misdiagnosis and being treated for depression, anxiety, etc, despite being in the ER and ICU multiple times a year, and after a few days of rest and saline solution being discharged as "dehydrated" I joined the army, hoping I could at least die a hero. I tried to become a ranger (which is hilarious, as I could barely walk) and in the Army got a proper diagnosis after showing up with a 50/44 blood pressure and 93 degree temperature (a whole bunch of CT scans etc before a simple, cheap ACTH test) Since then, it took me a few years to get back on track, and now I'm doing amazingly well. Thank you for sharing the story.
A decade?? Unbelievable. How did you survive that long? Man I can't imagine the hopelessness you felt. So glad you made it through!! I find the part of you joining the army to die a hero hilarious because I can literally imagine how you felt 😂 Gosh that must have been awful. Glad to hear that you're doing well all these years later! Gives me hope for my journey being less than 2 years in!
@@LeviVaagenes My Drill Seargent nicknamed me "asthmatic supersonic" because I kept trying to run the 2 miles, and kept collapsing every 100 yards or so. Everyone, including myself found it somewhat hilarious, especially as we were an all RIP (Ranger Indoctrination Program) company, supposedly the guys who were going to be real bad-asses, and I couldn't even run.
I’m scared I have the same thing brother, I’m starting to have hyperpigmentation everywhere now ... but blood tests are still normal apparently :/ it’s been 7 years
My blood pressure used to be extremely low like that too, unbelievably low. No one suspected anything. I used to vomit at my job and lose my job because of it.
Hi, just got diagnosed with Addison’s today, fortunately I got it diagnosed super super early thanks to some very kind and good doctors here in Italy. I needed to hear this, hopefully I’ll live a normal life without any complications… Keep fighting my brother
Thank you for this from the bottom of my heart. I know I have had earlier stage adrenal fatigue since 1998. None of my medical doctors since then could find anything wrong with me. My now ex, abandoned me in 2021 because he got tired of my health issues after 38 years of marriage. There is finally more functional medicine coming in my area, and I finally got diagnosed with adrenal fatigue earlier this year after 24 years. I had Covid twice- once end of 2021 and in May of 2022. I have had long Covid ever since I got it the second time. Between that, already having adrenal fatigue, and then getting CPTSD from being so worn down and the trauma of my ex leaving me out of the blue - I started having shortness of breath sometimes often, my mineral levels have been depleting even faster than before, and I struggle with low blood pressure every day. I haven't been so weak like you got, but some days are pretty bad. I am looking for a new functional doctor as my last one is moving too slow with my treatments, and I think she just has too many clients. I have not been diagnosed with Addison's disease, but after watching this and another person's video - I think I already have it or am really close to having it if I don't get the help I need really fast. I want to give up some days as my health issues have been going on for 25 years now, and I am tired of the struggle, pain, and suffering because of doctors not listening to me. There's days I just want to give up, but I believe God told me to fight, and I still have things to accomplish. Sorry this comment is longer than most. I just wanted to share my story so you could know you are encouraging me and others and making a difference. Thank you!
(English is my 2nd language) I cried a lot watching this video. 20 years ago I was having adrenal insufficiency at the same time with hyperthyroidism so the adrenal problem was under the radar until I started to feeling too weak and tired, specially in the early morning. It was hard to wake up. Doctors said I was fine because the thyroid was controlled. One day I told the neurologist that it was so hard to wake up in the morning and that I felt better after 10 AM. That sentence changed her face and sent me to a Cortisol test next morning… The result was
@@MsAggie86 Licorice capsules and multiminerals supplement because the ones included in multivitamin are not enough. Recently I found out that Ashwaganda is used for balancing adrenals. God bless you 🙏
@@Magnificent86 Licorice capsules and multiminerals supplement because the ones included in multivitamin are not enough. Recently I found out that Ashwaganda is used for balancing adrenals. God bless you 🙏
I've just finally got out of almost a 3 year battle of health issues, and Addison's Disease was at the center of it. You have no idea how much this video helped me. The similarities between our stories are crazy, love seeing this community is so accepting.
I am someone with secondary AI. Hypopituitarism caused mine. No tumor, which we looked for several times. Thank you for bringing awareness to this disease like this.
i am 15 years old and i got diagnosed with Addison Disease in May 2020 (at 14 years old). This story is very inspiring and thank you so much for sharing your story because it can be hard speaking about it.
My son is 16 and has headaches every morning. I have found him on the floor in the shower and his room in a coma like state. We been to lots of Doctors. Do you know what test they did for Addison’s?
I was diagnosed when I was 19, 17 years ago, and it was similar to your situation - my doctor had no idea and mis-diagnosed me a couple of times. It got to the point where I was rushed to ER and it was actually a student doctor who suggested testing me for addisons. I was on deaths door and thankfully after a few weeks in hospital I was out, taking my prescribed meds and getting on with life. Thanks for making this video - very relatable and comforting to know you are living a normal life again!
Never really knew what Addison's was or how serious it can be but thanks for shedding some light on that bro, happy you're here with us today man, much love.
Levi, I was diagnosed with Addison's three years ago. My story is VERY similar to yours. I was healthy one day then I started a one-year slide to near death. I'm glad you have it under control!!
I have not been diagnosed but I have asked 3 separate doctors to test my Adrenals. The 1st one said ...well let's concentrate on your blood pressure for now. The 2nd one said....I don't know a test for that. The 3rd one said she would find out and let me know. I'm still waiting. I think I need to see an Endocrinologist to get help. I cannot work and barely can drive to a grocery store. I also have other Auto Immune disorders and chronic pain but I have yet to find a doctor who listens and actually believes what I'm saying. I don't know how I came across your video but only by the grace of God did it pop up in front of me. Thank you and God bless you for helping others.🙏
the test name is- "8:00 AM Cortisol Level" . The other test is called "ACTH levels". They do both at the same time while you are fasting. You show up before 7:30 AM to the lab to do all the papers-record thing and at 8:00 AM they will put the needle and withdrawn the blood. I'll pray God to illuminate your doctor's brain and to be more sensitive.
Very relatable friend. "How did I not think something bigger was happening" Sorry to hear about the dismissive treatment you received. That was my story too. Eventually I did get validation during the ACTH test in the same ER where people were gossipping about the "anxious anorexic bitch" in the room. They would have let me die! Who asked for the intial cortisol test? ME! You know yourself better than anyone else and your self advocacy is so key. Thank god and thank your strength in making it to the other side the 13:46 transition is like syncope Sad you didn't tell us how good the first intravenous cortisol felt. For me I spent the whole night tentatively dancing after that. I felt SO GOOD
Yes! The ACTH was a huge indicator. That's when the red flags started popping up. I totally forgot to talk about that intravenous cortisol.. Holy crap my body literally drank that stuff hahaha I too went from the edge of death to full of life in a matter of days after getting that intravenous! I would agree though, sad to hear that you were being mocked while you were in great danger. I've heard of several people who were also misdiagnosed with Anxiety. It sucks that sometimes you have to hit rock bottom and almost die to realize that you're your biggest advocate.
I have secondary disease, where my pituitary gland doesn’t work properly. Hence, can’t regulate my adrenal glands at all. I am dependent too on hydrocortisone orally three times a day. Similarly to you, I was miss diagnosed by psychiatry. It wasn’t until I had fainted 4 times in a 24 hour period of time along with chronic vomiting that landed me in the ER. Long story short, I was diagnosed with TBI with damage to my pituitary function. And I was also told I shouldn’t be alive with the almost absent levels of cortisol in my blood, and in 24 hours I too would have been dead. Thank you so very much for sharing your story.
I too have Addison’s Disease. Have had it for almost 26 years. Took 5 months to diagnose it. I felt like I could have written your script. I’m shocked at how low your sodium was and that you are still here. God is so good! Mine got to 117. Thank you for bringing light to this rare disease and for spreading awareness. Makes days a little brighter to know how much support we have and how much more we can get. Take care!
That's what so many people are saying! It seems as though we all went through the exact same experience. Part of me still blocks out memories from those few months because it's quite painful to relive. Scary to come to the realization of how close my (and so many others) life came to ending. Thanks for watching!! It's only up from here!!
I am so damn tired.of most of these Drs not paying attention to what the hell patients are telling them and automatically assuming someone just has anxiety or depression such an insult to us patients its like they are lazy to do their jobs and really look into what is wrong with the patient and they still get paid ! For basically not doing their job . If i didn’t do my job and provide the service i’m supposed to for my clients I wouldn’t get paid! It’s so messed up we suffer with illnesses and feel terrible for much longer than we should with no diagnosis. I’m glad you finally got answers and are feeling better.
a few live with millions dying and praise Jesus is insane. theist need to read the book in context and about Kesus God said man should change cortisol DNA or even blood. Cherry pickers 2000 different Jesuses depending how its cherry picked or what religion is down right insane and way off course in pure honesty. Theist Christian for 30 years until critical thought and dexamethasone turned my belief upside down .
I was crawling on all fours as well and ended up in the hospital. It took a couple of Specialists before I was diagnosed with Addisons. I hope your doing well and thank you for the video!
Seriously in tears watching this! I have gone through my own health trials, and I know how traumatic it can be. You are so strong! It's clear the Lord really has an important call on your life. Way to keep moving forward, and thank you for sharing your story.
That's so kind! Thank you so much Morgan! Really appreciate you taking the time to watch the video. There's nothing worse than knowing something is wrong with your body but not having any answers. Hope you're doing well now!
hey levi im a 14 year old girl and i got diagnosed last year in 2020 i also had a lot of the same things happen to me i am in hostpital rn actually lol i had a addisons crisis and im so happy that u shared ur story it made me feel like i was not alone thank you :) take care everyone
Diagnosed about 15 years ago and aside from longer stays when accidents happen I learned to listen to my body and I am proud to meet another advocate. How can I help as I have felt my story needed to be heard.
Hi Levi, I was just diagnosed primary AI/addisons. Thank you for this. I needed this this morning. I also believe God has saved me and this has happened for a reason. I'm trying to implement steriod injections to be carried on ambulances in my area. Also trying to get the awareness out. Yes, the Lord was definitely with you. I believe this with all my heart. God bless you.
Wow, my story is almost exactly the same as yours. My sodium was a 108 and the doctors marveled at me. I was also "very tan." Thank you for sharing your story!
Thank you for your story. I'm glad to hear another person with this disease. I was recently diagnoised with Adison Disease. I have been going through immunotherapy for Grade 3 Melanoma since 10/2021. I started having the symptoms you were having starting in April of 2022 and kept brining my concerns to my primary and my Oncologist only to be told tiredness and weakness is part of immunotherapy. Fast forward to Jun 2022 - I had an Adison Crisis where my blood sugar dropped to under 20 and went into respiratory failure. After 5 days in the hospital - the endocrinologist confirmed I have Adison Disease and advised to discontinue cancer treatment immediately because of the immunotherapy treatment is killing my health immune cells. If rescue would not have been called when my wife did. I would be dead today.
I am going to the doctor in two days. I think I may have this disease. I have hashimotos and other adrenal dysfunction. I am consistently fatigued, shiver, vomitting, all of these things that are played off as "depression." I am in the same boat - I am so tired I can barely shower, brush my teeth, etc.
A friend just recently shared this with me and I can relate so much. A month ago I was put into ICU for my sodium being 117 and had no electrolytes in my body. I’ve been on steroids ever since and just got the call yesterday that I do have Addison’s and will have to take those steroids everyday for the rest of my life... thanks for sharing your story.
Dad (84) has lived with undiagnosed (yet randomly “treated” AD for 30+ years and uses Prednisolone (without regime due to docs and lack of diagnosis) - recently admitted to hospital for vascular disease (also a symptom of chronic AD), they take him off Prednisolone because it’s a vascular ward, despite 30+ years of taking it because he doesn’t make enough! Gawd knows how he has survived 10s of mercy dashes … at 84 … he is experiencing exactly this criticality over the past 10 days and many times before - we’re hoping tomorrow that a GP will understand what that “kill switch” is like and that you are literally dying (I experienced the same thing for over 12 months, 3 years ago) - it’s inexplicable aside from being conscious while dying - it’s not even like fainting, despite sometimes doing so - that’s just the light weight version that somehow buys a bit more time. So sorry you went through this, from experience I know that it carries with it a form of PTSD - I hope you’re doing OK. All the best, Anna South Australia
THANK YOU!!!!! You have explained the pain and experience of Addisons so well. I have a very similar story. Mine was about 4 years before diagnosis with being sent home 2 times by the same ER dr 2 weeks in a row. There were multiple times to the ER that particular summer but that was the worst of it. Funny thing was i had the same ER nurse most every time i was in. I too was told i am lucky i came in when i did or i would be dead. This was the 3rd trip to the ER in 3 weeks. I remember even asking the nurse, that i had got to know threw all the visits, "can i please stay this time? I can't do this anymore." Man, thinking about it makes me cry. I was so done. He said, "you aren't going anywhere." That started my 8 day hospital stay and final diagnosis. I will be sharing your story and video along with my story on my page. So many don't understand and i know this will help them. Thank you AGAIN for your amazing video and detailed experiences of before and after. The struggle is so very real. As i type this i am waiting for my son to chill out so i can close my eyes for a much needed rest.
Hahaha love that you added that part about your son! haha It's terrible that most of the time we have to get worse before we get better. If you were like me, being admitted to the hospital was such a sigh of relief. I remember thinking "finally they take me seriously, maybe they'll get me the help I need" Well praise the Lord for smart doctors! Otherwise who knows if we'd be here today. Thanks for sharing your story!! It's very powerful! Thanks for the support!!
This breaks my heart especially because we are supposed to trust healthcare and doctors to help and listen. It makes me sad to know we are dependent on this sort of a system where doctors don't listen and are usually overworked. I can only imagine how many people are unheard and misdiagnosed. I am sending a lot of love and support to everyone.
Thank you for sharing your story. My daughter fought 2 weeks for her life after an Addisonian Crisis. She had been increasingly ill for about 18 months. She had been very ill one day and then was found unconscious by her husband. The ambulance crew worked over an hour to get her stable enough to transport. Sepsis had spread throughout her body and the swelling in her brain caused wide spread brain damage. She survived but still is unable to eat, speak , walk. She seems to be recovering a little, will smile when family come to visit her. We pray the Lord who protected you from dying will bring her back to her husband and 2 young children. She is a Christian singer song writer. The last song she wrote was uploaded (rough recording) onto UA-cam. She had been deeply depressed. Alyssa Kogler Undone.
You are amazing! I’m being tested now … trying not to let the anxiety take over… what a testimony you have ! God is using you in a mighty way ! Praying for you! In Jesus name!
Levi! This is beautiful, amazing, relatable in every way. I too went through a lot to get to my recent primary Addison's diagnosis. I thought I was never going to feel good again. On 12/21 I woke up and could not move and lost consciousness and ended up in ICU for 5 days. I was told " we may not figure things out" . I have a good friend who has MS and she told me " you have to be an advocate for yourself and I can be on the phone if you want". When the doc came back I said " you HAVE to figure this out or I will be here in another few months or I will be dead". And then things started happening to arrive at the Addison's. I have a lot to learn but I like you feel almost blessed now. I have worked as mid six figure executive( like a dog) for the past 25 years and have always been an artist ( painter) on the side, that helped me release things inside. I stopped painting about a year ago and that should have been a sign. The couple I did do I am glad for because now I see where I was and it is captured. I know too that God needs me here and I am looking forward to living my life, creating art. I will share this video with my teenage twins because it is so relatable. Good job man!
Wow you have an amazing story! Love that you advocated for yourself! It probably saved your life! I wish I had said the same thing the first time I went to the doctor. Maybe I would have been diagnosed sooner. So glad you are back to creating art. Thank you so much for sharing! Also, thank you for the encouraging words!
Thank you for sharing Didn’t get diagnosed for 45 years after crisis. I would go in and out of symptoms my whole life. I’m grateful to be here. 95 lbs to 120 lbs 😊
Thanks for sharing your story!! My daughter was just diagnosed with Addison’s through and emergency to the hospital . Her body went into shock and she was very sick. Because she has autism and a learning disability she was unable to describe how she was feeling. She was hospitalized last year with MIS~C last year as an immune response to an exposure to covid. They believe the trauma of that put her into adrenal failure. She has antibodies attacking her thyroid as well. I’ve been seeking more understanding about this disease and am so glad I got to hear your story. My daughter was hospitalized the same dates 2 years in a row - Feb.2nd- Feb.10. It’s ironic, but not a surprise to God. He saved her life and I’m so grateful! For I know the plans I have for you declares the Lord. Plans to prosper you. Plans to give you a hope and a future. Jer.29:11 God bless you!!!❤️💛♥️
Thank you for the video, I have secondary Addison’s which is pituitary related (panhypopituitary). I was diagnosed when at 17 and am now almost 50. Had to teach some doctors and learn not to trust others along the way but all is good.
OMG!!! Thank you for posting this!!! I’m 53 and was diagnosed with Addisons disease a year ago. But should have been diagnosed in my 20s. II was told fibromyalgia, lupus, anxiety, depression, and more. I craved salt so much, threw up all the time, had headaches, had fevers, had consistant low potassium and sodium. Was told for 20 years that I needed to eat more bananas and Gatorade. 3 years ago I was in the hospital for status elepticus and dehydration and stayed 10 months. The next year again 8 months. The next year 5 months. My kidney doctor told me 10 years ago I had an adrenal tumor. I kept telling doctors maybe that is what it is. But they brushed me off. Oh and 2 years ago my BP was 60/40. Not compatible with life. An ambulance took me in to the ER and the doctor there thought I was on something and told the nurse to cover me with a blanket and let me sleep it off. WTF!?…. I was dying in adrenal crisis! The only reason it was caught, is my nephrologist happened to walk by my bed and see me and tried to wake me up. Because he couldn’t he told the er doc to admit me and have an endocrinologist see me. Se came later in the day and diagnosed me,saved my life. She also did a teaching at the hospital that week using my case pointing out how that doctor in the er was allowing me to sleep into my death. I now take the pills and injections. Not so fun fact about Addisons, President Kennedy had it. That is why he was .sick. A lot…. I have cried through your video. I do not know why it was on my recommendation page but I’m grateful. Thank you for telling your story in this way. Have you ever thought of telling other peoples story on your channel? More faces more exposure, more education of more doctors. Doctors watch UA-cam also. ❤
I have Addison's disease as well, you took me back to when I was diagnosed at 18. It took 5 days in hospital but like you I lived about a year in crisis beforehand, day 3 in hospital they told my Mom I likely would not make it. Life is so precious.
Wow, so glad you were diagnosed. We all have such similar stories. Life is super precious, sometimes it takes something traumatic like Addisons to make you realize it.
@@topacybits3576 yes absolutely! You can live a vest normal life. I’ve been able to do many things that I even wasn’t able to do since being diagnosed!
@@LeviVaagenes good to hear, because of addison i was underweight i am 1.92m and around 64kg, the doctor told me that i can gain 10-15 kg. Hope i can start training kickboxing cuz i trained it 3 times a week before addison but i havent been training for a year
Wow! I am blown away by your story, bro! You are here for a reason! So thankful that God preserved your life and that you are beating this thing! Let me know if you ever need prayer or any support! ❤️
I was diagnosed with Addison's Disease about 4 years ago when I ended up in the hospital 1 day away from my entire body shutting down and dying. I connected with this video so much and I am so glad that you are trying to raise awareness for this disease. Even with medication I never feel 100% normal and it is hard to balance it since not much is known about the disease. Thank you for sharing your story, I know that I am not alone.
Thank you for sharing. I have Adrenal Insufficiency (caused by the removal of a pituitary tumor), and figuring out that I was adrenal insufficient was an absolute nightmare. It took several adrenal crises which nearly led to my death on multiple occasions. Going to share this video so people can learn a little about what life with AI is like.
Thank you for sharing 🙏 your story is just like mine. I was an Rn for 25 years, now disabled because of this, and a car accident which after 4.5 years led to my diagnosis of Addison’s. I’m disgusted by the medical profession, and how they treat people with invisible diseases. I basically diagnosed myself and had to fight to be finally tested. After multiple hospital visits for what I now know were crises. I also just spent a month in the ICU and then a week on the medical floor, for a major medical emergency, and they didn’t understand Addison’s at all. It was a nightmare. Again, thank you for sharing your story! We need to be our own advocates, and even though we don’t have the energy, we have to use every bit we have to make sure the medical community understands what we have and need.
I have an Instagram page called @addisonsadvocate, be sure to head over there and check it out! Going to start hosting Instagram Lives in the coming weeks with many of you to create a place for us to share our stories with each other in hopes of providing hope and encouraging the community. See you over there!
O wow. They did the same exact thing to me. Xanex messed my cortisol up even worse.
Thanks for sharing your story
❤ Is it genetic?
i live in minnesota too am currently going through this. im naturally tanned.
You Saved My Life! I am living with this right now! I would not bee here if it were not for you! I am now Stage 3 the most aggressive version it's been 8 months since the day I found out. A month ago I didn't have Diabetes I am now a full type one diabetic because of My Addison's Disease severity.
As a current nursing student I wanted to share that this disease is covered over and over again, its on so many exams and boards. I'm just so shocked that such a heavily taught/studied disease was missed by so many medical professionals around you.
My nurses and doctors had no idea what it was. Finally after they called and consulted with endos. They learned how to treat it.
Heavily taught? Where? I have it and that has utterly been so very, very far from the case from the case. It's horrific how little if nothing they know and what they do and do teach is 50 years old and crude at best.
Mine took over five years to diagnose it was mislabeled as fibromyalgia and CFS for many years
I have had it since I was 13 years old. Did not find out until I was 38 and the level of cortisol was 1. The Lord Jesus kept me from dying young and now I have a great family.
Reading through these comments ,I wonder how many people die undiagnosed ? Perhaps it is not as rare as people think. What a wonderful video,thankyou.💖✨️
Hi I have Addison's. I was diagnosed in my 40's my situation was similar to yours. I'm now 64 years old. I'm in Stage 4 Adrenal Failure. I'm on 7 5mg Hydrocortisols in the morning and 4 in the afternoon. I receive two injections a month also. I'm so sorry for your journey. I'm from a small town in North Carolina and until I watched your video I felt no one in the universe had Addison's but me. Thanks for sharing.
This is a great story. I was in the Marines at the time of my diagnosis. I spent 6 months in other dealing with addisonian crisis and they just kept telling me I was dehydrated. It wasn’t until I almost died while on predeployment leave that a civilian doctor was able to find out I actually had addisons disease.
Def takes an observant doc... I'm sorry it took you so long
The worst part of this disease is that the others see you walking and doing you daily stuff think that you are okay and if you got tired or sleep all day think that you are just lazy, they don't know that we are fighting to do the most simple things 😢
Can totally relate
@@VishalKumar-xl2xd oooh 🥺
hope things get better for you, I actually passed that period and I'm good now, so don't be upset, visit a doctor, take care of yourself every thing will be alright 🌸
@@hafsabouchekouk8777 may I know how old are you ?? I'm in my mid twenties doing a job but couldn't be able to do good struggling to have a good physice
People don't understand but make fun of me, both mentally and physically I'm struggling 😭😞
I'm going to the doctor.
YOU'RE RIGHT, I THINK THIS ABOUT MYSELF.
Absolutely right
I have secondary adrenal insufficiency I basically had radiotherapy around 2 years ago to treat a brain tumour and was prescribed a very strong steroid called Dexamethazone and once I’d weaned off this my adrenal glands totally shut down with a cortisol level of just 22! I was actually in hospital last night for the emergency hydrocortisone injection and placed on a drip due to having adrenal crisis symptoms the salt cravings and constant dry mouth are a pain and the fatigue I feel is on another level I’m 36 but feel 90! Amazing you’ve done this video as it is so rare and an illness you never heard spoken about sending well wishes!
Yes your correct as the same here with just one injection allergic or what ever did me in very badly for 3 years?a little better but, five years ago I had 1 injection of Dexamethasone for an inflammation. went through hell with even some Osteoporosis in a very healthy strong bones as it kicked in so fast but that went away broozing like a 80 year old. some recovery but still waking like grave feeling shaking. I don't want to depend on man made hormones because my body and mind rejects it as my belief was stolen. to many miss treating Endocrinologist sorry i can;t travel or trust. Suppose i could go to Missouri but dought it for some reject man made hormones.
I’m
I'm overwhelmed by the support of all of you! Addison's Disease is a super rare disease and not a lot of people know about it but together we can change that. Please share this video with friends and family so that we can raise awareness and ultimately save lives!
Thanks for creating this video. I have had Addison's since 2011. You have a gift for making videos, wishing you all the best.
Anyone's with addisons disease can relate but mine didn't get that bad 2 questions 1: Are you on steroid pills still and if so you really should get a insulin pump for cortisol they are really hard to get but they will help you so much and 2: I am wondering how you can believe in God when you have to rely so much on doctors? I had a similar story but I am not religious so I think science is the key.
@@PhotoPrimierePro Hey there! Thanks for watching! To answer your questions, yes I am still on steroid pills 3x a day! I heard that pumps are a thing but I'm a pretty active person so the thought of having to worry about a pump attached to me freaks me out as well as it seems somewhat inconvenient for my lifestyle. I could be wrong though! Who knows, one day I might look into that option!
And in regards to your second question, before getting diagnosed I didn't necessarily lose my faith, rather I became complacent in my relationship with God. I was too sick to even try and pursue God. It's one of those things where when you're in the heat of the moment, it's easy to get tunnel vision and lose sight of the total picture. When I look back on the days before getting diagnosed I see God's hand all over my story. It was hard to see at the time but I know he was there all along. I believe that God gave my doctors supernatural wisdom to treat and properly diagnose me when they actually did. Faith is "the assurance of things hoped for, and the conviction of things not seen." The short answer is, it's pure faith.
Hi levi,
Am wondering Is there a specific medicine to treat your disease and what is the dosage ?
The video tells you go watch it or just look up addisons disease
General doctors have fallen for the lie that "happy pills" are a good substitute for real medicine. Not only is it sloppy diagnosing, but those psychiatric drugs are also more dangerous than most people realize. I'm so glad you made it to a real diagnosis and that you're still here! It's so true what you said about advocating for yourself. Thank you for making this video.
Loved seeing your video; I was diagnosed almost 66 years ago at the age of 10; I've had a wonderful life and done everything I wanted to do; wishing you a long and happy life also.
Wow!! That is so incredibly encouraging to hear. I hope to lead as healthy and active life as you have! Thank you so much for sharing, that gives me a lot of hope!
Thank you for sharing
@Samire Mamedova hey Samire! I’ve been told that the dark skin associated with Addisons fades over time once you’re put on steroids but in my own experience I haven’t gotten any lighter or any darker since being put on medication 2 years ago. It’s one of the few perks of this disease! Hope you’re well!
I needed to read this. Thanks.
@Samire Mamedova am also facing this situation
I just got diagnosed with Addison's Disease a month ago after being in and out of the hospital for the past 4 years. I have had 3 near death experiences in the last 6 months and have lost an extreme amount of weight (causing me to be diagnosed with unintentional anorexia.) It is so relieving to finally have an answer and I am grateful to be alive. Listening to your story made me feel less alone and showed me that I have so much more time to my life than I thought I did! thank you (:
I'm a med student and I can't believe that's how they approached u on your first consult.. thank u for sharing your story. I'll make sure to raise awareness about this and be aware myself.
You are a miracle. thank God
It was pretty bad not gonna lie. That's amazing, you're the people who are going to save lives!!
Same for me. Oh your depressed. It's all in your head. Go for a psyche eval. When I could hardly walk into office. I'll never forgive them. I'm a RN. The only way I've come up with this diagnosis is from me. New Drs. Hopefully this time. Tired of being tired.
I was just diagnose Friday and the doctor didn’t explained the meds and I am I don’t even have a needle.
This is pretty standard....i dont know how many appointments i have been turned away from.
the doctor who prescribed xanax should of been struck off ... you are a miracle god saved you alright you are a very special human being , loved your video
I have type 1, hypothyroidism and Addisons. Diagnosed 1 year after the other.
I had a doctor blow me off as well and he luckily recognized he could have killed me, then went back for further education.
Your story is inspiring. I hope the best for you and that God blesses you abundantly in this new year.
People don’t understand medical trauma . Or the emotions we go through and how it affects our mental health . My heart goes out tk young people who are going through health issues hang in there everyone who reads this!
Thank you for sharing!! I’m sorry the doctors gaslight us all so much with “anxiety & depression”! Completely neglecting real investigative research to find the problem and treatment! I to am experiencing those same mobility problems and more. I am currently going through autoimmune testing so I don’t know exactly what I have yet. I’m so happy you are alive, got treatment, and live a fulfilling life! Praise the Lord!
I’m going through this now at 60yo. Waiting on test results and feeling awful. Please keep me in your prayers ❤ Thank you 🙏 😊
Hi. How are you now? Did your reports come back yet?
I have Addison's. I was a very, very healthy person until I was around 35. Suddenly, I began to feel off, then sick, then deadly ill. It was literally everything that you described. They did every test on the planet and couldn't find anything. Finally, they sent me to the Mayo Clinic, where two months later, they realized it was Addisons. Looking back, they diagnosed me with all of the things that frequently mimic Addison's; Chronic Fatigue Syndrome, Fibromyalgia and when me skin started turning dark in my elbows and wrists, etc, they diagnosed me with something called Dowling Degos. It has been a journey. I really resonated with everything that you said. Thank you for filming this.
Same they actually found mine thanks to a gallbladder surgery released the monster♡ showed what I was actually going through they actually said ptsd,depression anxiety all that. ♡
@@teresamomof52 I’m happy you figured out what it was. It makes you crazy when you feel that badly and they can’t figure it out.
OMG!! Same!! ... It took 3 years to get a diagnosis. 😭😭😭... I had given up on life and just accepted that I was dying.
@@lordvader2681 It is the most frustrating season of your life. I am so happy that you finally got an answer. Knowing the problem makes it completely manageable.
Jesus isn't done with you yet--he's got big plans for you! Thank you for giving God the glory. I am crying through your video. Thank you so much for sharing your story. My son's best friend (who is like a second son to me) had every single symptom you described and today he was finally diagnosed with Addisons disease. He sent this video out today to the people close to him to spread the word. He is 32 and almost died a few months ago because the doctors couldn't figure out what was going on. God bless you. Stay strong! See, even 2 years later your message is reaching the people who need to hear it.
I could cry listening to this. This was my life before my addisons diagnosis. I was told for 3 years after symptoms started that I was just anxious. The story about the shower hit home for me. I would just lay in the shower floor because I couldn’t get my heart to slow down enough to stand
Same😢 I’ve had to sit in the shower for years, had multiple visits which I now know were crisis at the ER, and Addison’s was only found bc I pushed the internist, and fought for my life/diagnosis. I basically diagnosed myself. I’ve now spent the past 6 months waiting for an endo, with an interest who keeps saying “it’s too complicated for me, so wait for the endo” I lost over 38 pounds, and neither my doctor or internist are taking it as seriously as they should. I’m on HC, but the other symptoms are still a huge issue. It’s a frustrating process 😣
Wow! I’ve had ADDISONS for 16 yrs … it’s horrid… had another crisis today! As I’ve got older they happen quick fast, Out !
Your doing a wonderful job! No doctors here understand, or know about it! I’ve been in numerous occasions in hospital, last experience they nearly killed me, and I had a silent crisis… worst ever as you can talk,move so you look a sleep…..still suffering pts… 🦋🦋🦋🦋
your correct it is horrid! Dexamethasone took 5 years from my life and hoping for a full recovery of what it did to my adrenal and induced cushings syndrome. Doctors know very little and Endocr- don't know much better.
My daughter was diagnosed in 2017 at 18. It took 4 ER visits, two ambulance rides, multiple doctors visits, therapist visits and her going to an eating disorder clinic (told by doctors she was an anorexic) to be diagnosed.
It's tragic that so many of us are misdiagnosed with things like that. Anxiety, anorexia, thyroid issues etc. So glad your daughter was properly diagnosed!
Wow i see all these comments and i am Lucky. I get diagnosed early im 18 and Just got medication cholesterol or something (got diagnosed yesterday)
I’m tearing up , I belive every word you’re saying . I started having my health ailments when I was 21 . Been down hill since then . 34 now I went through so many trials and tribulations either misdiagnosis and being brushed off while knowing I’m slowly dieing . I have a long story but the best part out of all of my pain and suffering is I found Jesus Christ our lord and Savion whom saved me from the pit of hell . He is my rock and the reassurance that I know our bodies will return to dust but my soul will spend eternity with our Heavenly Father . Me and you both will gain a new body no more pain and no more suffering a glorified body! What a day that will be . Listening to old hymns of the church really lifts my spirit up when I am in a flare up . God bless you brother!
Thanks for the video. My experience was much more gradual. For 10 years I struggled with recovering from exercise - having to go to bed like I had a cold. It gradually got worse until I stopped exercising all together. Luckily my bloods showed i had hypothyroidism. When that medication didn’t work my wife pushed me to see an endocrinologist who diagnosed me. I have never had a crisis but now have a 3rd autoimmune condition. Grateful that it all worked out but have had doctors tell me that I couldn’t have had the condition for 10 years. There is so much they don’t know. Your comment about looking after yourself is so true.
1 Injection high dose of Dexamethasone 5 years ago for inflamation from a product. my adrenal glands all most shut down and death like feelings vertigo dark emotions and places no one would wish on their worse enemy. 5 years ago and still waking grave feeling taking 2 hours to get moving but shaking is all most gone. induced Cushings Syndrome in a healthy person. afraid to take steroid hydrocortisone and Endocrinologist- don't know a good dose would help or kill me. I am not going to go that far unless they can make sure. Missouri treatment would be best . Dexamethasone really messed up my frontal lobe and still feel like a zoombie confused but gradually it might get better but, my Doctor can't be sure100% or even at all.
I have secondary Addison’s and was on deaths door too. There definitely needs to be more awareness about this life threatening disease!
cushings desease?
@@leomartolentino4758 Cushing's disease is too much cortisol.
@@christinasaucier6514 yes but once you have surgery to fix it then you don’t have enough cortisol and you have secondary adrenal insufficiency. That’s what I have right now.
Aaron thank you for saying that. I'm a nurse and had no idea. I finally found some Drs. Maybe this time. I've been to many. As a nurse I had no idea.
Lost someone special just 28 to this terrible illness xx
Hey man youre not alone. I was diagnosed with Addisons disease and POTS syndrome in 2013. I graduated high school and endured the same effects and sypmtoms. Its been ten years with it and its been a very hard road with this illness. Tons of hospital visits and adrenal crisis. Doctor didnt understand what i had at first so they tought i was acting sick to get out of school. Im 28 now and still have very tough days. I understand your pain. Thank you for your video.
Levi, thank you so much for posting your story on UA-cam. This is how we learn. At age 68, my sister was diagnosed with Addison Disease. Hearing your story, my sister went through the same thing. My sisters age and she was overweight, unfortunately, she died of Addison's disease in December 2022 at age 69. I cried watching your video and listening to your story. The take away for me is, when and if I hear about someone who have the same symptoms as you and my sister, I will mention this disease and urge them to get proper testing done. The problem with the much of the medical community is, they think you are a drug addict trying to get drugs instead of listening to what you have to say. I hear this constantly from people seeking medical help. Yes, Jesus had your back Levi, and you will continue to be blessed. Thank you again for your story.
Did she take Keytruda?
I’m there now & saw Endocrinologist first time last week , I’ve felt like I’m dying often & mornings are the worst I’m so scared thanks for sharing this
I am a health care provider and ashamed at how you were treated. Your video and coverage of the disease is excellent! Thank you for producing it.
I also have Addison’s disease and I think it’s really amazing how you’re sharing your story and inspiring others!
Madeline thank you so much that's so encouraging! I've come to the realization that our stories are so powerful and are so worthy of being told! So keep sharing yours! Wishing you all the best and thanks for watching!
I’m more amazed at the number of doctors who shrug off the symptoms, especially in women! I had symptoms for decades. At 23, the first doctor suspected Addison’s, but instead listed it as “dysautonomia function” and sent me to a cardiologist who agreed with the diagnosis adding syncope (passing out). It wasn’t until age 48 with my potassium level at 2 (deadly, btw) I was finally diagnosed. I’d been told mitral valve prolapse, which can result from damage to the heart when you have untreated Addisons. I have a strong suspicion Addisons is hugely under diagnosed and it’s symptoms written off as “emotional disorder” or less kindly, hypochondria.
is there any cure for that? can you somehow fix this?
@@---md2ny No. no cure for Addisons
@@---md2ny eat lots of leafy greens, it won't cute it but it will manage the symptoms
Hi Levi. I have Primary Addison's. I was diagnosed in March 2013. I lost 70 pounds in 4 months. I went from a size 18 to 2. I was found covered in bile, rushed to the ER. I was brought up to ICU and I was 2 points away from being in a coma. Our stories are so very similar. Thank you for sharing.
Oh my gosh. It's terrible that you had to get to such an awful place before being diagnosed. So happy you're okay now!!! We have very similar stories!
Your story brought tears to my eyes. I went through an almost IDENTICAL experience. I almost died. People thought I was anorexic and a tanning addict. I lost 3 jobs and mind you, prior to getting sick, I was a huge athlete. I thought I was going crazy!!!! I have lived with Addisons disease now, for over 28 years. At times, it is still a science experiment especially when it comes to working out, playing sports, dealing with sodium depletion from sweating and taking care of myself. I am so happy you are better now, and healing!
Oh wow that’s crazy that they called you that! I glad you are doing much better now 😌
Hello, I would very much like to get some pointers form you on managing your activities and medications for this. I too was very athletic prior to this health condition and now I have difficulty doing what I enjoy and not having health issues.
@@captaintom7600 I was wondering too.
I know this comment is a year old but before I was diagnosed, the Dr.s also thought I was anorexic and sent me to a psychologist. I ended up twice in the hospital before I was diagnosed. If it wasnt for the tanned skin I think I would have probably died. I was on death's door. Couldn't walk without puking and my heart raced. Couldn't do anything really. I am so thankful for the Dr that diagnosed me. He saved my life. I'm 43 now was diagnosed at 18
Thank God that you are still here. 🙏🏾✝️
Every doctor on the planet should watch your video. Brillant ! So well done ! 🤩
Yes so well said!!
I’m only 10 minutes into your video and I’ve been crying the last 8 minutes!
Your story hits so close to home I’m finishing your sentences before you say them.
It’s like I’m reliving the almost two years undiagnosed Addison’s all over again.
Just hearing someone else go through the same things I did is heartbreaking but I also have a sense of relief that there’s others out there who actually get it!
Thank you so much for sharing your story.
It’s been 9 years since falling into a coma due to Addison’s being undiagnosed for so long.
Its completely changed my life and has opened up doors to more health issues to the point where I’m no longer able to work (I was working full time in a homeless shelter and street outreach) but its lead me to the one thing I’ve been in need of and was searching for God’s Grace, Truth and Love.
Legit, wouldn’t change anything because now I have Jesus so I’m definitely okay with how my life has turned out!
Sending so much love and a ton of Blessings from Canada ♥️
Wow, i can't imagine going 2 years in that state. Mine was only 3 months and i felt like i couldn't do even a day more. There are others out there to get it! I completely understand. Blessings to you!! Take care of yourself!
This is me right now, I’ve been undiagnosed for two years
@@manikamia9687please can you tell me if you lost muscle mass as well as strength? I am struggling for 4 plus months have gotten very weak and desperate. I have seen many doctors and many tests are supposed normal it makes no sense... until now I see these videos and maybe have something to ask for.
please can you tell me if you lost muscle mass as well as strength? I am struggling for 4 plus months have gotten very weak and desperate. I have seen many doctors and many tests are supposed normal it makes no sense... until now I see these videos and maybe have something to ask for.
I LOVED this video! Your battle and your victory over Addison's Disease is one of the most heroic testimonies I've ever heard. Glory to God!
I am from Bangladesh, and I have Addison's disease and diabetes also, i am 40 years old, now I am taking cotson 10.
Thank you very much for sharing your story
Hi!!! I have PAI since 2008, Today I”m 43 years old.
Just as you said I’m a surviver, I had my three babys without knowing that I was sick, I don’t know how I did it.... three c-section without cortisol.. wow!!! Jesus really loves me.
I have good days and bad days but mostly good days. I fight everyday with the fatigue, but I make exercise 5 times a week, have a work and try to have a normal life.
Thanks for your videos.
Oh my goodness. Your life was truly spared. I cannot even come close to imagining the pain you were going through. You're so resilient! Love that you're not letting it get the best of you. I hope to be like that too. Wishing you all the best, thanks for watching!
Hi Marie, I also had my daughter via c section. Prior to being diagnosed. Without cortisol etc but I have noticed after I gave a birth to a child my health deteriorated.
I have all of this stuff happening right now. I’ve been sick for 4 years. Last trip to dr they gave me antidepressants. I can’t eat any food. I can’t sleep. I can’t work. I’m not allowed to drive. I can’t think. Diagnosed with “gut” issues. Sibo. Diverticulosis (diagnosed with colonoscopy). Pots. Low bp. Vasovagal syncope. Underweight. Ibd. Leaky blood brain barrier. Currently going to die while waiting for an mri. If I get the energy to roll out of bed I’ll go to the er. I have a deep disrespect for medical “professionals”. Just giving me fluids and telling me to wait 6 months for an mri.
I’ve never been tested for addisions. I’ve been in the ambulance from blacking out in public 3 times in the last year.
Ontarios medical system is a joke. It’s 700 bucks for an mri just across the border. So I asked to pay to have it done here…. No no no. You can’t pay. Wait to die. Thanks “pensioner”. (That’s a drone who only has a job for a pension). I see fat ppl eating 700 dollars worth of Uber eats a month…. But I “can’t” spend 700 bucks to get an mri. Shit I’d spend whatever I could get.
Or at least do more then just basic tests.
When you thanked the lord…tears! Bless you!
Wow just watched your video . My 19 yr old daughter Emma was diagnosed with Addison’s almost one year ago today. Majority of doctors were convinced she had an eating disorder. Even as she lay in the hospital as an inpatient and they were slowly bringing her sodium level up , a nurse told us Emma should be transferred to s local hospital with a psych ward. It took 6 mos for a diagnosis when I finally mentioned to one of the docs at the hospital on day five how I notice her skin is really dark , did they test . In your video when you talk about how you felt after the diagnosis. We know exactly what that was like, all those months of 40 lb weight loss. No energy, passing out , unable to even make it more the s few hrs at school her SR year . Watching my softball varsity starter not even able to walk for her SR pictures … the diagnosis saved her life and yes her faith in Christ . He was there each step of the way. She is doing great now living life , Freshman in College she’s a beautiful young lady with a beautiful future ! Thank you for sharing!
Wow, thanks for sharing Cindy! I'm so glad she's doing well now! It's crazy how doctors' initial diagnosis for women seems to be an eating disorder or anxiety. It really shows how unknown Addison's still is. I'm glad you mentioned the tan! That's how I was diagnosed too. Hope she continues to stay healthy and lead a normal life!
Dear Levi,
Thank you Levi for creating this video. My son and l live in Australia. He is 17 and was diagnosed with Addison's Disease 5 days ago. Thankfully the doctors got the diagnosis right after 2 weeks as l felt like my beautiful, strong, healthy son was literally wasting away in front of my eyes. I have never been so worried in my life, l was scared, his symptoms were unusual so l knew the cause must be also. He had been vomiting most mornings for two weeks, was extremely fatigued, had lost a lot of weight and upon his second admission to the Emergency Department, he had to put in a wheelchair. The doctors did blood tests, chest xray, ultrasound, MRI of his brain. First diagnosis was gastroenteritis, l said that l didn't believe it was that, then CBS, cyclical vomiting syndrome and after few days on a drip he was sent home with anti-nausea medication. This l also did not believe. Within a week l took him back as he was getting so weak he struggled to stand. He was put back on a drip with continued anti-nausea medication. I kept saying to the doctors that his colour was not right. We had spent a month in Northern Australia and Indonesia but that by this stage was 2 months ago and l was saying that his tan should have faded more, as mine had. Finally the diagnosis. It was a relief as you said, but we were devastated, we still are as it is not even a week. It is amazing though how quickly the hormone replacement began to work.
Sean my son had a dream to join the airforce and become a fast jet pilot, a high aspiration. This dream appears to be shattered. As his mother l want to console him but my words do little. I think your video will help him to not feel so alone with this rare disease. I will certainly be reading the comments from others.
Regards,
Lisa
Dang. I just wrote a huge comment and it was mostly deleted. I'll keep this short: I dated a woman for 5 years with Addison's. Make sure to keep your pills in 2 different places while you're traveling. We had our car broken into on a hike and they stole her meds...and she was crashing... luckily we had spares in my backpack. Also save up extra meds in case of a disaster. She's had it for 12 years and has lived a very healthy life since diagnosed. Every few years her body will change and things will get weird, but it usually only lasts a month or two while they recalibrate the meds. I hope many good things for you on your journey! Thanks for sharing your story. Always important to seek out the doctors who will actually take the time to listen to you. So important!
That's a really good tip, I can't imagine not having access to my meds when I need them. Definitely a scary situation! Hoping to have a smooth journey, not looking to make a trip back to the hospital anytime soon. Thanks for the comment man! Appreciate the support!!
Really good advice!
I am also trying to save some meds if SHTF , you just never know.
That cool to hear she is lucky to be able to get out and hike. I also have addisons nit that lucky I fight to get out of bed everyday
I have addisons... and had the same experience with doctors not listening to the point I died... I was 23 and a new mum. I fight everyday xxx thank you for this video xxx
I can't imagine what you went through... you're a warrior! Don't ever forget that!
I met a young patient who had Addison's. Her Mom was a huge advocate for her. Her Mom is a nurse. I'm convinced she saved her daughter's life by seeking the cause of her daughter's illness.
God bless you.
I was diagnosed 2 years ago in a full addisons crisis. I battle severe hypoglycemia with it and am slowly getting on track with it. Its definately a challenge.
I think this is my situation. I'm extremely hypoglycemic cortisol was 6.2 waiting endo appointment. What are your symtoms how do you know what's low sugar or addisons symtoms
I’ve had Addison’s for about 15 years. It took months to get diagnosed. I asked the doctor to check cortisol because my nails had dark vertical strips. I read that somewhere. That helped the doctor diagnose me. All the best to you. Praise Jesus.
Wow that's awesome that you pretty much diagnosed yourself! Amen! take care Kathy!
Hello! What exactly were your cortisol levels? I just got mine checked and mine are low in the AM. I’m getting a ACTH test done soon.
@@gh0stFace13x I never did ask for my levels.
Hello ,I'm also having that ,esp my face is dark than my neck .can you tell me the other symptoms
@@kpopmadness136 really tired, legs hurt, back hurt, weight loss
It is crazy how close our story is!! It took months for a Dr. to take me seriously. I finally put all my symptoms in the internet and addisons came up. I had every single symptom. I cried right then and there because I finally knew what was wrong with me. I had to wait a month before I could get in to the dr. so I went to the emergency room and I told them what I think I have. They got me in two weeks earlier but still didn't do the tests to show if I had it. when my dr. appoint came I could barely talk or walk. It took another week and a half to get blood results back. They got them and had me admitted. I was so close to dead. It was so frustrating to find some one to take me seriously. I had to be an advocate for myself.
Sad that that's the way these things go. You're not taken seriously until it's too late. Same with me, I described my symptoms to my sister and she googled it and "self diagnosed" me with Addisons almost a month before I was officially diagnosed.
Thank you for this video. I was just diagnosed today with Addison's disease. I also have Multiple Sclerosis so the fatigue was unreal. At first, I was so confused and shocked it up to my MS but deep down I knew something was not right and felt different especially my 80/53. Thanks again for this video!Jesus saves lives, prayers sent your way... 🙏 🙌
Hey Levi! I too have Addison’s Disease and am blown away by the similarities in our stories. From crawling into the ER on all fours to the doctor noticing my tan, the misdiagnosis and eating salt from a spoon. Thank you for sharing your story! So glad that they figured it all out and that you’re healthy!
It's wild because I am a black woman and I am quite fair most of the year. But, I was holding a tan like never before. But, I lived in FL at the time. Hopped in a train to get to MD because my son swore Hopkins was where I needed to be. I did not crawl in theER. I stepped lightly and then fell and hit my head right there in there ER. Two years later - I am still here.
Thank you for sharing. I’ve had Addison’s disease for 17 years. The fatigue is debilitating. Even once you have it under control. After a cold the fatigue i feel after is the worst part and that’s even after increasing my meds.
Oh man the part where the doctor tells you it’s anxiety has triggered me 😢. Why are they like this. Dismissive. I’m going through this right now
God bless you young man. I’m newly diagnosed with Secondary Adrenal Insufficiency - mid life. However, in hindsight I’ve been living with the symptoms of the illness for many years that have gone over looked. I now treat with hydrocortisone as well, but still having difficulties with SOB, so still working closely with my endo, but like Levi I’m so grateful, try not to complain bcuz someone else didn’t receive the dx that they can pretty much be okay with medication. I pretty much dx myself which got me to a dr. bcuz my symptoms over 20 years was never connected by doctors treating individual symptoms. Best of health to us all.
Hi Levi, just been diagnosed today with Addison's disease. Felt a bit in despair, came across your youtube video and it was so incredible and my approach has changed. Thank you Levi.
My daughter was recently diagnosed with Addison’s at the age of 32. Thank you for sharing this as it has helped her to know others have it too. God bless
Wow, hope your daughter is now doing well!! It's easy to feel alone when you see that 1 in 100,000 number but I hope she knows there's more of us than she might think!
Me too. At age 32 last year in December
After a decade of misdiagnosis and being treated for depression, anxiety, etc, despite being in the ER and ICU multiple times a year, and after a few days of rest and saline solution being discharged as "dehydrated" I joined the army, hoping I could at least die a hero. I tried to become a ranger (which is hilarious, as I could barely walk) and in the Army got a proper diagnosis after showing up with a 50/44 blood pressure and 93 degree temperature (a whole bunch of CT scans etc before a simple, cheap ACTH test)
Since then, it took me a few years to get back on track, and now I'm doing amazingly well.
Thank you for sharing the story.
A decade?? Unbelievable. How did you survive that long? Man I can't imagine the hopelessness you felt. So glad you made it through!! I find the part of you joining the army to die a hero hilarious because I can literally imagine how you felt 😂 Gosh that must have been awful. Glad to hear that you're doing well all these years later! Gives me hope for my journey being less than 2 years in!
@@LeviVaagenes My Drill Seargent nicknamed me "asthmatic supersonic" because I kept trying to run the 2 miles, and kept collapsing every 100 yards or so. Everyone, including myself found it somewhat hilarious, especially as we were an all RIP (Ranger Indoctrination Program) company, supposedly the guys who were going to be real bad-asses, and I couldn't even run.
I’m scared I have the same thing brother, I’m starting to have hyperpigmentation everywhere now ... but blood tests are still normal apparently :/ it’s been 7 years
My blood pressure used to be extremely low like that too, unbelievably low. No one suspected anything. I used to vomit at my job and lose my job because of it.
Hi, just got diagnosed with Addison’s today, fortunately I got it diagnosed super super early thanks to some very kind and good doctors here in Italy. I needed to hear this, hopefully I’ll live a normal life without any complications…
Keep fighting my brother
Thank you for this from the bottom of my heart. I know I have had earlier stage adrenal fatigue since 1998. None of my medical doctors since then could find anything wrong with me. My now ex, abandoned me in 2021 because he got tired of my health issues after 38 years of marriage. There is finally more functional medicine coming in my area, and I finally got diagnosed with adrenal fatigue earlier this year after 24 years. I had Covid twice- once end of 2021 and in May of 2022. I have had long Covid ever since I got it the second time. Between that, already having adrenal fatigue, and then getting CPTSD from being so worn down and the trauma of my ex leaving me out of the blue - I started having shortness of breath sometimes often, my mineral levels have been depleting even faster than before, and I struggle with low blood pressure every day. I haven't been so weak like you got, but some days are pretty bad. I am looking for a new functional doctor as my last one is moving too slow with my treatments, and I think she just has too many clients. I have not been diagnosed with Addison's disease, but after watching this and another person's video - I think I already have it or am really close to having it if I don't get the help I need really fast. I want to give up some days as my health issues have been going on for 25 years now, and I am tired of the struggle, pain, and suffering because of doctors not listening to me. There's days I just want to give up, but I believe God told me to fight, and I still have things to accomplish. Sorry this comment is longer than most. I just wanted to share my story so you could know you are encouraging me and others and making a difference. Thank you!
(English is my 2nd language) I cried a lot watching this video. 20 years ago I was having adrenal insufficiency at the same time with hyperthyroidism so the adrenal problem was under the radar until I started to feeling too weak and tired, specially in the early morning. It was hard to wake up. Doctors said I was fine because the thyroid was controlled. One day I told the neurologist that it was so hard to wake up in the morning and that I felt better after 10 AM. That sentence changed her face and sent me to a Cortisol test next morning… The result was
What were the natural treatments you found? Please share.
Yes please share the natural treatment. 🙏
@@MsAggie86 Licorice capsules and multiminerals supplement because the ones included in multivitamin are not enough. Recently I found out that Ashwaganda is used for balancing adrenals. God bless you 🙏
@@Magnificent86 Licorice capsules and multiminerals supplement because the ones included in multivitamin are not enough. Recently I found out that Ashwaganda is used for balancing adrenals. God bless you 🙏
I've just finally got out of almost a 3 year battle of health issues, and Addison's Disease was at the center of it. You have no idea how much this video helped me. The similarities between our stories are crazy, love seeing this community is so accepting.
I am someone with secondary AI. Hypopituitarism caused mine. No tumor, which we looked for several times. Thank you for bringing awareness to this disease like this.
Did they do a ct scan?
i am 15 years old and i got diagnosed with Addison Disease in May 2020 (at 14 years old). This story is very inspiring and thank you so much for sharing your story because it can be hard speaking about it.
@Immortal Remorse hello what was your sign
My son is 16 and has headaches every morning. I have found him on the floor in the shower and his room in a coma like state. We been to lots of Doctors. Do you know what test they did for Addison’s?
@@mikeryniec737 cortisol is the first thing they test for
@@mikeryniec737 Cortisol levels, ACTH, Mineral levels - salt being a dead giveaway
I was diagnosed when I was 19, 17 years ago, and it was similar to your situation - my doctor had no idea and mis-diagnosed me a couple of times. It got to the point where I was rushed to ER and it was actually a student doctor who suggested testing me for addisons. I was on deaths door and thankfully after a few weeks in hospital I was out, taking my prescribed meds and getting on with life. Thanks for making this video - very relatable and comforting to know you are living a normal life again!
Never really knew what Addison's was or how serious it can be but thanks for shedding some light on that bro, happy you're here with us today man, much love.
Thanks dude, got pretty dicey there for a bit. Figured making a video is the least I can do to raise some awareness! Super thankful to be here.
Levi, I was diagnosed with Addison's three years ago. My story is VERY similar to yours. I was healthy one day then I started a one-year slide to near death. I'm glad you have it under control!!
My son died of Addison's Disease in 2001. Thank you for sharing.
I'm so incredibly sorry for your loss. My heart breaks for you. Hope you're staying strong.
I have not been diagnosed but I have asked 3 separate doctors to test my Adrenals. The 1st one said ...well let's concentrate on your blood pressure for now. The 2nd one said....I don't know a test for that. The 3rd one said she would find out and let me know. I'm still waiting. I think I need to see an Endocrinologist to get help. I cannot work and barely can drive to a grocery store. I also have other Auto Immune disorders and chronic pain but I have yet to find a doctor who listens and actually believes what I'm saying. I don't know how I came across your video but only by the grace of God did it pop up in front of me. Thank you and God bless you for helping others.🙏
the test name is- "8:00 AM Cortisol Level" . The other test is called "ACTH levels". They do both at the same time while you are fasting. You show up before 7:30 AM to the lab to do all the papers-record thing and at 8:00 AM they will put the needle and withdrawn the blood. I'll pray God to illuminate your doctor's brain and to be more sensitive.
Very relatable friend. "How did I not think something bigger was happening" Sorry to hear about the dismissive treatment you received. That was my story too. Eventually I did get validation during the ACTH test in the same ER where people were gossipping about the "anxious anorexic bitch" in the room. They would have let me die! Who asked for the intial cortisol test? ME! You know yourself better than anyone else and your self advocacy is so key. Thank god and thank your strength in making it to the other side
the 13:46 transition is like syncope
Sad you didn't tell us how good the first intravenous cortisol felt. For me I spent the whole night tentatively dancing after that. I felt SO GOOD
Yes! The ACTH was a huge indicator. That's when the red flags started popping up. I totally forgot to talk about that intravenous cortisol.. Holy crap my body literally drank that stuff hahaha I too went from the edge of death to full of life in a matter of days after getting that intravenous! I would agree though, sad to hear that you were being mocked while you were in great danger. I've heard of several people who were also misdiagnosed with Anxiety. It sucks that sometimes you have to hit rock bottom and almost die to realize that you're your biggest advocate.
Did you guys get the acth stimulation test to see if your adrenals were failing?
I have secondary disease, where my pituitary gland doesn’t work properly. Hence, can’t regulate my adrenal glands at all. I am dependent too on hydrocortisone orally three times a day. Similarly to you, I was miss diagnosed by psychiatry. It wasn’t until I had fainted 4 times in a 24 hour period of time along with chronic vomiting that landed me in the ER. Long story short, I was diagnosed with TBI with damage to my pituitary function. And I was also told I shouldn’t be alive with the almost absent levels of cortisol in my blood, and in 24 hours I too would have been dead. Thank you so very much for sharing your story.
I too have Addison’s Disease. Have had it for almost 26 years. Took 5 months to diagnose it. I felt like I could have written your script. I’m shocked at how low your sodium was and that you are still here. God is so good! Mine got to 117. Thank you for bringing light to this rare disease and for spreading awareness. Makes days a little brighter to know how much support we have and how much more we can get. Take care!
That's what so many people are saying! It seems as though we all went through the exact same experience. Part of me still blocks out memories from those few months because it's quite painful to relive. Scary to come to the realization of how close my (and so many others) life came to ending. Thanks for watching!! It's only up from here!!
Same for me I completely understand I also have PAI
I am so damn tired.of most of these Drs not paying attention to what the hell patients are telling them and automatically assuming someone just has anxiety or depression such an insult to us patients its like they are lazy to do their jobs and really look into what is wrong with the patient and they still get paid ! For basically not doing their job . If i didn’t do my job and provide the service i’m supposed to for my clients I wouldn’t get paid! It’s so messed up we suffer with illnesses and feel terrible for much longer than we should with no diagnosis. I’m glad you finally got answers and are feeling better.
a few live with millions dying and praise Jesus is insane. theist need to read the book in context and about Kesus God said man should change cortisol DNA or even blood. Cherry pickers 2000 different Jesuses depending how its cherry picked or what religion is down right insane and way off course in pure honesty. Theist Christian for 30 years until critical thought and dexamethasone turned my belief upside down .
I was crawling on all fours as well and ended up in the hospital. It took a couple of Specialists before I was diagnosed with Addisons. I hope your doing well and thank you for the video!
I'm so glad you were diagnosed Dan! Thank the Lord for incredible doctors! Stay well! :)
Seriously in tears watching this! I have gone through my own health trials, and I know how traumatic it can be. You are so strong! It's clear the Lord really has an important call on your life. Way to keep moving forward, and thank you for sharing your story.
That's so kind! Thank you so much Morgan! Really appreciate you taking the time to watch the video. There's nothing worse than knowing something is wrong with your body but not having any answers. Hope you're doing well now!
I love that you include Our LORD JESUS CHRIST! You have made me smile! God bless brother!
hey levi im a 14 year old girl and i got diagnosed last year in 2020 i also had a lot of the same things happen to me i am in hostpital rn actually lol i had a addisons crisis and im so happy that u shared ur story it made me feel like i was not alone thank you :) take care everyone
Diagnosed about 15 years ago and aside from longer stays when accidents happen I learned to listen to my body and I am proud to meet another advocate. How can I help as I have felt my story needed to be heard.
I have Addison"s and it is very difficult to manage this disease. thank you for sharing
Hi Levi, I was just diagnosed primary AI/addisons. Thank you for this. I needed this this morning. I also believe God has saved me and this has happened for a reason. I'm trying to implement steriod injections to be carried on ambulances in my area. Also trying to get the awareness out. Yes, the Lord was definitely with you. I believe this with all my heart. God bless you.
Wow, my story is almost exactly the same as yours. My sodium was a 108 and the doctors marveled at me. I was also "very tan." Thank you for sharing your story!
Thank you for your story. I'm glad to hear another person with this disease. I was recently diagnoised with Adison Disease. I have been going through immunotherapy for Grade 3 Melanoma since 10/2021. I started having the symptoms you were having starting in April of 2022 and kept brining my concerns to my primary and my Oncologist only to be told tiredness and weakness is part of immunotherapy. Fast forward to Jun 2022 - I had an Adison Crisis where my blood sugar dropped to under 20 and went into respiratory failure. After 5 days in the hospital - the endocrinologist confirmed I have Adison Disease and advised to discontinue cancer treatment immediately because of the immunotherapy treatment is killing my health immune cells. If rescue would not have been called when my wife did. I would be dead today.
This film made me cry as I also have Addisons and had a very similar story. Thanks so much for doing this video ❤️❤️❤️
I am going to the doctor in two days. I think I may have this disease. I have hashimotos and other adrenal dysfunction. I am consistently fatigued, shiver, vomitting, all of these things that are played off as "depression." I am in the same boat - I am so tired I can barely shower, brush my teeth, etc.
A friend just recently shared this with me and I can relate so much. A month ago I was put into ICU for my sodium being 117 and had no electrolytes in my body. I’ve been on steroids ever since and just got the call yesterday that I do have Addison’s and will have to take those steroids everyday for the rest of my life... thanks for sharing your story.
Are they covered by insurance?
Are they expensive without?
@@greencherrybutterfly they are covered by my insurance and I’m not sure how much they are without.
Dad (84) has lived with undiagnosed (yet randomly “treated” AD for 30+ years and uses Prednisolone (without regime due to docs and lack of diagnosis) - recently admitted to hospital for vascular disease (also a symptom of chronic AD), they take him off Prednisolone because it’s a vascular ward, despite 30+ years of taking it because he doesn’t make enough!
Gawd knows how he has survived 10s of mercy dashes … at 84 … he is experiencing exactly this criticality over the past 10 days and many times before - we’re hoping tomorrow that a GP will understand what that “kill switch” is like and that you are literally dying (I experienced the same thing for over 12 months, 3 years ago) - it’s inexplicable aside from being conscious while dying - it’s not even like fainting, despite sometimes doing so - that’s just the light weight version that somehow buys a bit more time.
So sorry you went through this, from experience I know that it carries with it a form of PTSD - I hope you’re doing OK.
All the best,
Anna
South Australia
THANK YOU!!!!! You have explained the pain and experience of Addisons so well. I have a very similar story. Mine was about 4 years before diagnosis with being sent home 2 times by the same ER dr 2 weeks in a row. There were multiple times to the ER that particular summer but that was the worst of it. Funny thing was i had the same ER nurse most every time i was in. I too was told i am lucky i came in when i did or i would be dead. This was the 3rd trip to the ER in 3 weeks. I remember even asking the nurse, that i had got to know threw all the visits, "can i please stay this time? I can't do this anymore." Man, thinking about it makes me cry. I was so done. He said, "you aren't going anywhere." That started my 8 day hospital stay and final diagnosis.
I will be sharing your story and video along with my story on my page. So many don't understand and i know this will help them. Thank you AGAIN for your amazing video and detailed experiences of before and after. The struggle is so very real. As i type this i am waiting for my son to chill out so i can close my eyes for a much needed rest.
Hahaha love that you added that part about your son! haha It's terrible that most of the time we have to get worse before we get better. If you were like me, being admitted to the hospital was such a sigh of relief. I remember thinking "finally they take me seriously, maybe they'll get me the help I need" Well praise the Lord for smart doctors! Otherwise who knows if we'd be here today. Thanks for sharing your story!! It's very powerful! Thanks for the support!!
This breaks my heart especially because we are supposed to trust healthcare and doctors to help and listen. It makes me sad to know we are dependent on this sort of a system where doctors don't listen and are usually overworked. I can only imagine how many people are unheard and misdiagnosed. I am sending a lot of love and support to everyone.
Thank you for sharing your story. My daughter fought 2 weeks for her life after an Addisonian Crisis. She had been increasingly ill for about 18 months. She had been very ill one day and then was found unconscious by her husband. The ambulance crew worked over an hour to get her stable enough to transport. Sepsis had spread throughout her body and the swelling in her brain caused wide spread brain damage. She survived but still is unable to eat, speak , walk. She seems to be recovering a little, will smile when family come to visit her. We pray the Lord who protected you from dying will bring her back to her husband and 2 young children. She is a Christian singer song writer. The last song she wrote was uploaded (rough recording) onto UA-cam. She had been deeply depressed. Alyssa Kogler Undone.
I'm so sorry. I listened to her recording! She has a beautiful voice. I'll be praying for her!!
You are amazing! I’m being tested now … trying not to let the anxiety take over… what a testimony you have ! God is using you in a mighty way ! Praying for you! In Jesus name!
Levi! This is beautiful, amazing, relatable in every way. I too went through a lot to get to my recent primary Addison's diagnosis. I thought I was never going to feel good again. On 12/21 I woke up and could not move and lost consciousness and ended up in ICU for 5 days. I was told " we may not figure things out" . I have a good friend who has MS and she told me " you have to be an advocate for yourself and I can be on the phone if you want". When the doc came back I said " you HAVE to figure this out or I will be here in another few months or I will be dead". And then things started happening to arrive at the Addison's. I have a lot to learn but I like you feel almost blessed now. I have worked as mid six figure executive( like a dog) for the past 25 years and have always been an artist ( painter) on the side, that helped me release things inside. I stopped painting about a year ago and that should have been a sign. The couple I did do I am glad for because now I see where I was and it is captured. I know too that God needs me here and I am looking forward to living my life, creating art. I will share this video with my teenage twins because it is so relatable. Good job man!
Wow you have an amazing story! Love that you advocated for yourself! It probably saved your life! I wish I had said the same thing the first time I went to the doctor. Maybe I would have been diagnosed sooner. So glad you are back to creating art. Thank you so much for sharing! Also, thank you for the encouraging words!
Thank you for sharing
Didn’t get diagnosed for 45 years after crisis. I would go in and out of symptoms my whole life. I’m grateful to be here. 95 lbs to 120 lbs 😊
Praise God. He protected you 🫶🏻
Thanks for sharing your story!! My daughter was just diagnosed with Addison’s through and emergency to the hospital . Her body went into shock and she was very sick. Because she has autism and a learning disability she was unable to describe how she was feeling. She was hospitalized last year with MIS~C last year as an immune response to an exposure to covid. They believe the trauma of that put her into adrenal failure. She has antibodies attacking her thyroid as well. I’ve been seeking more understanding about this disease and am so glad I got to hear your story. My daughter was hospitalized the same dates 2 years in a row - Feb.2nd- Feb.10. It’s ironic, but not a surprise to God. He saved her life and I’m so grateful! For I know the plans I have for you declares the Lord. Plans to prosper you. Plans to give you a hope and a future. Jer.29:11
God bless you!!!❤️💛♥️
Thank you for the video, I have secondary Addison’s which is pituitary related (panhypopituitary). I was diagnosed when at 17 and am now almost 50. Had to teach some doctors and learn not to trust others along the way but all is good.
Hahah unfortunately I understand that statement all too well.
OMG!!! Thank you for posting this!!! I’m 53 and was diagnosed with Addisons disease a year ago. But should have been diagnosed in my 20s. II was told fibromyalgia, lupus, anxiety, depression, and more. I craved salt so much, threw up all the time, had headaches, had fevers, had consistant low potassium and sodium. Was told for 20 years that I needed to eat more bananas and Gatorade. 3 years ago I was in the hospital for status elepticus and dehydration and stayed 10 months. The next year again 8 months. The next year 5 months. My kidney doctor told me 10 years ago I had an adrenal tumor. I kept telling doctors maybe that is what it is. But they brushed me off. Oh and 2 years ago my BP was 60/40. Not compatible with life. An ambulance took me in to the ER and the doctor there thought I was on something and told the nurse to cover me with a blanket and let me sleep it off. WTF!?…. I was dying in adrenal crisis! The only reason it was caught, is my nephrologist happened to walk by my bed and see me and tried to wake me up. Because he couldn’t he told the er doc to admit me and have an endocrinologist see me. Se came later in the day and diagnosed me,saved my life. She also did a teaching at the hospital that week using my case pointing out how that doctor in the er was allowing me to sleep into my death. I now take the pills and injections. Not so fun fact about Addisons, President Kennedy had it. That is why he was .sick. A lot…. I have cried through your video. I do not know why it was on my recommendation page but I’m grateful. Thank you for telling your story in this way. Have you ever thought of telling other peoples story on your channel? More faces more exposure, more education of more doctors. Doctors watch UA-cam also. ❤
I have Addison's disease as well, you took me back to when I was diagnosed at 18. It took 5 days in hospital but like you I lived about a year in crisis beforehand, day 3 in hospital they told my Mom I likely would not make it.
Life is so precious.
Wow, so glad you were diagnosed. We all have such similar stories. Life is super precious, sometimes it takes something traumatic like Addisons to make you realize it.
@@LeviVaagenes if you get diagnosed and you have the right medications u can live a good life right?
@@topacybits3576 yes absolutely! You can live a vest normal life. I’ve been able to do many things that I even wasn’t able to do since being diagnosed!
@@LeviVaagenes good to hear, because of addison i was underweight i am 1.92m and around 64kg, the doctor told me that i can gain 10-15 kg. Hope i can start training kickboxing cuz i trained it 3 times a week before addison but i havent been training for a year
My 12 year daughter was just diagnosed yesterday. Thank you for sharing your story.
Wow! I am blown away by your story, bro! You are here for a reason! So thankful that God preserved your life and that you are beating this thing! Let me know if you ever need prayer or any support! ❤️
Amen brother!!! Always so encouraged by you Danny. Thanks for the support!
I was diagnosed with Addison's Disease about 4 years ago when I ended up in the hospital 1 day away from my entire body shutting down and dying. I connected with this video so much and I am so glad that you are trying to raise awareness for this disease. Even with medication I never feel 100% normal and it is hard to balance it since not much is known about the disease. Thank you for sharing your story, I know that I am not alone.
Thank you for sharing. I have Adrenal Insufficiency (caused by the removal of a pituitary tumor), and figuring out that I was adrenal insufficient was an absolute nightmare. It took several adrenal crises which nearly led to my death on multiple occasions. Going to share this video so people can learn a little about what life with AI is like.
Thank you for sharing 🙏 your story is just like mine. I was an Rn for 25 years, now disabled because of this, and a car accident which after 4.5 years led to my diagnosis of Addison’s. I’m disgusted by the medical profession, and how they treat people with invisible diseases. I basically diagnosed myself and had to fight to be finally tested. After multiple hospital visits for what I now know were crises. I also just spent a month in the ICU and then a week on the medical floor, for a major medical emergency, and they didn’t understand Addison’s at all. It was a nightmare. Again, thank you for sharing your story! We need to be our own advocates, and even though we don’t have the energy, we have to use every bit we have to make sure the medical community understands what we have and need.