My Addison's Disease Story - A Response
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- Опубліковано 5 тра 2021
- Hey everyone! I just wanted to make a video and say thank you to each and every one of you who took the time to watch my Addison's Disease Story video that I posted a couple months ago. The response has been absolutely incredible. I've been able to connect with hundreds of other people who are also living with Addison's. Hearing everyone's stories has inspired me so much. The resiliency of all of you fellow Addison warriors is astounding. I'm so encouraged by the community we've created here and I'm so stoked for it's continued growth! You guys are amazing.
- Levi
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Hi Im Sue from Australia. Ive struggled with Adrenal insufficiency Hyponatremia and dehydration for over 8 years.
Ive been having iv sodium weekly.
Still trying to get someone to listen and care. Feel lifeless. I believe God has kept me alive for a purpose but I am so tired . Thank you so much for your story.
I was diagnosed in summer of 2019 after 8 months of being so sick I lost my job, 45 lbs, my health insurance, and a lot of other things with them. I had severe hyponatremia twice in a 2 week span. They didn't find the cause on my first hospital stay and LUCKILY a Dr remembered me and thought to check my cortisol. I was given steroids but I was so far gone that I started going into shock anyway. Ended up in ICU and stayed in the hospital nearly a week. I had never felt more alone and terrified in my life. I am lucky to be here right now and I immediately started volunteer work for NADF. People are dying every year from this - undiagnosed or otherwise. Nothing makes me more angry than this. I will be sharing my story too. We were the lucky ones, but it shouldn't come down to mere luck. This needs visibility.
Do you also take daily cortisol meds twice a Day?
Levi I am a researcher, from Spain, your story was very important to me to understand the disease from inside. It's so difficult not to empathise with you. Thanks for your story and your amazing communication skills, you are a leader
In Spain also excellent video
Your voice matters Covid is causing people to become symptomatic. I was just diagnosed. I'm terrified. This is helping.
Addisons kinda fits into the "society of invisible diseases".. and you have made it more visible to the world. Thank you so much. Hopefully more people will learn you do not have to feel like a burden telling people how you feel, about what's wrong with you. Best of luck to you.
I 100% agree. I love this. Thanks for watching Maggie!!
I felt alone too. Good to see there might be a community behind this
I have a feeling there's a lot more of us than we might think haha
Hi I’m from Australia and your story really touched me. I have Addison’s disease as well as Type 1 diabetes and 12 other major problems, I was referred to psychiatrist, psychologist, told that I was addicted to prednisone and that was my problem. You are not alone. Great video, you are saving lives. It was only after 8 doctors ignored my symptoms, I have three other auto immune diseases, (they found me unconscious after they withheld my Prednisone) on the bathroom floor in the hospital. By then I was praying to die just like you, hoping to not wake up. One experienced doctor did a stim test and wallah…. Addison’s disease.
Crazy how it can get to such a dire point before doctors finally diagnosing us. Glad you're okay!!
I've been living with addison's for 22 years was diagnosed when I was 16 did struggle with it for few years just didn't understand nor wanted to understand but living a normal life now do get days when I struggle but I'm shocked there are people who know and understand great vid 👍
Thank you for sharing your story! After several emergency room trips, doctor’s appointments, specialist after specialist, a stranger on the internet pointed out my skin discoloration and told me that it’s possible that I have Addison’s disease. My recent blood work results indicated that my cortisol levels are low, so now with just a few more tests to be certain, I’m finally on my way to the window of certainty. Praying for you! I hope adjusting to this new life-style hasn’t been too hard on you, because that’s honestly what I’m most afraid of. Best of luck!
Wow, I'm glad the doctors are testing you for AI! Getting a diagnosis is sometimes the hardest part! The transition was hard for a few months but then it became second nature. A bit inconvenient at times to be honest but we don't really have a choice hahaha I'll be praying for you too!
Hi Levi, l am so glad that you made it through an horrendous journey of misdiagnoses, your story amazed and shocked me because of some of those doctor’s attitudes towards you were indescribably un empathic and cruel. I have AI now, but in away l was lucky because l was having immunotherapy for malignant melanoma and although when l made the decision to take the chance of getting AI and the possibility of a lot of other nasty illnesses, the statistics were very low for endocrine disorders. So it seemed a reasonable risk to take because my melanoma was metastatic and un-resectable. But the oncologist doctors and nurses are looking out ( like hawks ) for any signs of any of those many disorders that arise from immunotherapy, so it was spotted as soon as l turned up at the clinic complaining of nausea, dizziness, intense headache, chronic fatigue and fainting. The anterior part of my pituitary gland was inflamed and was destroyed by the immunotherapy so no longer makes ACTH, so my adrenal glands don’t make any cortisol and like you have to take Hydrocortisone daily. What also surprised me was that you left it so long to ask for help from your mum, l have three boys ( all in their thirties now ! ) but if they called on the phone and said Mum l’m ill, come get me, l’d be there like a shot because that’s what mum is for, she’s got your back forever or should have ! When l was hearing your story l wanted to say to everyone who might one day be in the same position as you, being really unwell, if you can, get your mum’s help 🌸☺️🌸! Best wishes to you and kind regards Gabby 🌸🌼🌸👍
I came here from watching your other video. When you consider that Addison's affects 1 in 100,000 people, that's just over 3,000 people with Addison's in the USA so having 10,000 +views is fantastic. That's 7,000+ people who may have learned something new about a condition they may never have known exists.....
Sharing our story is impactful. I feel like I’m coming out every day telling my story with Addison’s Disease and all the autoimmune diseases that seem to be coming my way after my diagnosis. It means the world to me to inform everyone I come in contact with so it can hopefully save/diagnose someone else before it’s almost too late like we went through. I think it’d be great to share other people’s stories sometime too! Keep posting! It’s motivating for me! Thanks for you all you!
Amazing! I love it, so glad you've been stepping out and sharing. The impact is greater than we could ever see!
Ιm from Greece..Ive seen your video many times, crying and laughing at the same time! You encourage me after being shocked cause of my 13 old daugher's diagnosis! I stopped feeling alone, i return to nornal day life, so my daugher followed me, proud of carrying her medication on her everyday with no fear of rejection! Thanks a lot!!
I Just got diagnosed to, Just gotta go on with your life. Tell your daughter i wish her good luck
I really want to thank you for sharing your story. When i listened to your story i felt so much less alone. Also for the people in the comments. I was so so sick for such a long time, hospital in and out thinking it was my eating disorder taking place. Docters didnt undertand and knew what was going on. I kept getting sickker and sicker. I am so thankfull for this one docter that found out i had addisons. He saved my life and since my diagnoses my life really changed. I feel good and way more myself with all the treatments. Addisons made me realise life isnt granted and this helped me live life to the fullest and fight my eating disorder. I am so so thankfull. Again, thankyou for sharing your story and make poeple understand and feel less alone. Keep going man, you are amazing💪🏼♥️
I love this! Sometimes it takes a traumatic experience like adrenal failure for you to truly realize how precious life is. Thanks for sharing Lisa!
Ya amazing story I also was diagnosed with eating disorder but my mom saved my live by rushing me to the ER Try getting a insulin pump for cortisol some doctors are against it but it makes you feel closer to normal and so much better than those pills
I’m taking my 16 yo daughter to the Endocrinologist tomorrow for her first visit with Addison’s. Like you, she has been slowly declining for months. She’s had to pull back from church ministries and basically sleeps most of the day. We are blessed in that her Cardiologist immediately looked at Addison’s disease and when the second set of labs came back drastically worse, got us an immediate visit with Endocrinology. I’m going to have her watch your video after we see the dr tomorrow. Thank you!
Yep you’re not alone I got Addison’s disease it sucks. I am not taking any medication for it but I’m eating right and I’m taking natural things and vitamins minerals and just trying to take it easy one day at a time some days I got a little energy other days no which I don’t have to explain that to you anyway, I think a lot of you were coming out in the open to everybody. God bless you because you’re an inspiration to me and I’m sure many others. It takes a lot to get on here and explain about a sickness that you got. I haven’t done it and I’m not going to so I admire you buddy God bless you you take care of yourself we got to do that you know thanks for the video🥰👍❤️
Thank you for these videos. After months of living on the couch, losing weight, dry heaving, etc, and multiple visits to our clinic for misdiagnoses,, my 11 year old was finally diagnosed at Children's Hospital Emergency Room in Saint Paul. They admitted him to the PICU and a few days on stress doses of hydrocortisone, they discovered he also had Type 1 Diabetes. It's been 2 months now and we're still trying to get a handle on everything. Your prior video really helped our son as he's been stressing himself every time his blood glucose goes low and/or he starts feeling bad. He takes some comfort in knowing there is someone else in Minnesota that also had Addison's.
Thanks again Levi!! I’m newly diagnosed !! So glad u are continuing to share ur story, better recognition in the medical field would be so great!! Blessings!!
Loved your first video, this one is great too. 9 years with Primary Addisons diagnosed because I was in crisis and dying. Keep motivating and educating people.... well done and wishing you all the best!! :)
You bet I will! Thanks for watching Amanda!
Levi I’m going to the endocrinologist today, hoping for the best. I know it’s adrenal failure for a fact. I just hope he listens to me instead of dismissing me like the last 4 ER visits. Went from 130 pounds to 98 in about a year
Wow, you'll be in my thoughts today! I know how hard it is. Keep fighting and don't take no for an answer!
My prayers are with you.
Hey, how'd it go with the Endocrinologist?
New subsciber here. A medical doctor from Kenya. I have Addison's and 3 other diseases. It's only been 3mnths with the diagnosis so it's more of self education from the patient's point of view rather than the doctor's/ books. Yes, I crawled into my endocrinologist's office 😂😂 and yes JESUS CHRIST should be more known than coke.
❤ the videos.
Again, thank you for sharing your story. I think you're the highest profile person with Addison's disease, and through that you've been able to reach so many more people than the rest of us with the disease could. I'm interested in seeing where you go with the channel, mostly the adventure stuff. It feels good and it's motivating to see other people like me get out there and try to do more intense activities. The Athletes with Addison's Disease Facebook group would probably also be interested in seeing your work.
I'm lucky to be in a profession that has given me the proper tools to educate and share! I agree, at first all I heard from people was how terrible and draining life is with Addison's. But it doesn't have to be that way! Stay tuned for more adventure videos! I've got a few in the works! I"ll also have to check out that FB page, didn't even know it existed!
Thank you for sharing! I just got diagnosed. I thought I was just going nuts until I heard your story. Thank you! Your story has really given me hope. God is so great! Thank you again!
Glad you found my video!! Thanks for sharing :)
Thank you so much for your videos. Its not always easy to have addisons when im still a teenager and videos like this help me better explain addisons to people and make me feel not alone. So Thank You!
You're amazing! I felt alone because I thought I was only "young" person with Addison's but finding people like you shows me that there are more of us out there than we think!
I just went through exactly what you had! This is all so scary, like you I was relieved to finally have an answer! I have primary also, right now we are trying to find the right steroid dose which is getting frustrating. I hope you are well!
🤙🏽 I live with someone who has Addisons and we are in beginning stages of locating a specialist to help her find her treatment for quality of life. My side of this is feeling helpless that I can’t do more and just watch a loved one suffer. 😢
Thank you Levi for your courage !
I saw your video when I was in a hospital when diagnosed Addison disease. You helped a lot to feel not alone. I hope you feel well 🤗 good luck
🤙 thank you so much for sharing your story. It took me 3 years to get diagnosed. I had cancer, very rare cancer, and took several treatments of immunotherapy which killed my immune system and then started having Addisons symptoms. I was in and out of the hospital from November2021 to March 2022 which included a rehabilitation hospital. I was treated for addisons but later they weened me off the steroids and I started getting sick and couldn’t walk without my heart beating out my chest and so out of breath. I hated showering it took everything out of me. Finally my Endocrinologist tested my stimulation of acth and cortisol and finally diagnosed with Addisons last week. Just listening to your story let me know I wasn’t alone. So thank you!
This is awesome your informing people on our lovely disease. I stumbled on this, and very cool that I have
I also feel very alone. I was diagnosed with Addison’s this past March ‘22 while i was hospitalized from being so ill. I also have so many other severe health problems that I currently are still having problems with. The steroids are kicking my but more then anything. I’m either super low or high. I don’t know how to make a video on here but maybe I’ll put something on my Facebook. My family knows but to them it’s just another disease that i have to them. Thank you and others for making videos like this. I’m also still learning. I appreciate you very much and I’m very sorry you had to be one of us. Peace and prayers!!
Yep, subscribed when I came across your Addisons video, I have Addisons also and that video helped me feel less alone. Your videos are high quality, keep it up 🤙
Amen! Means so much to hear that!! Thank you for subscribing!
Hi Levi
Thank you for sharing your story, your such an inspiration ❤️ I have just been diagnosed with addisons and diabetes from immunotherapy for stage 4 melanoma. The cancer is gone but these are the side effects I'm left with. Love your positive attitude bless you. And everyone else going through this. I've been researching food 😋 and there are so many good ones to eat and nourish your adrenals. In the long term to rebuild your system rather than a medication. Let food be your medicine. Hipocrates.
I watched your other video on AI, I instantly felt connected. Don’t self medicate they say. I wish we could do like people with diabetes test their sugar. I have one remaining adrenal gland remaining that produces a small amount of cortisol yet not enough. Thank you for speaking on behalf of all of us. Also happy to hear you love the Lord. 🤗
Thank you for your videos! I was just diagnosed with primary adrenal insufficiency. It's been a year since I haven't felt myself and was in the ER twice. Not even sure if I am going to feel better again but watching your videos gave me hope.
I am from a country with not so good Healthcare. I even have to travel 12 hours to our country's capital to attempt to find diagnosis. Even then I had to spend 3 months meeting with so many doctors only to find someone who gave me the diagnosis. I even know that we don't have hydrocortisone tablets here. We don't even have those injections available.
Seeing your video gave me so much hope after feeling hopeless for days. Please continue to share your story and inspire those of us who are still struggling.
🤙thx for the video, i was diagnosed 4 days ago.
Was losing control of meds during illness and realized after watching I was in trouble-after 15 years I should know better than that
I was diagnosed with Addisons 4 years ago.I was in and out of the hospital 4 times in 3 months and finally they found it.My adrenal glands are completely shut down but thanks to my awesome endocrinologist I maintain mine with minimal steroid doses.I still deal with fatigue and brain fog but I pretty much live a normal life.
Hello Levi, thank you so much for your videos. My mother died at 88, was diagnosed with Addison’s 4 days before death. Her suffering was horrible, we had so many Er and doctor visits, never got anywhere. What kept here alive I think was all the doses of prednisone for misdiagnosed arthritis. She had mottled discolored skin with loss of pigment all over her body. I have that too, mottled lips. No one can tell me if it’s hereditary. She didn’t start getting really sick until her 60’s. Can the adrenal gland work half way ok until it just wears out? I wonder. She had an episode of immense pain and was in the hospital for days but no diagnosis at that time. I think she died of this, but she was very sick and refused treatment.
In the past 4 months, I got diagnosed with hypothyroidism and adrenal insufficiency. Waiting for the Addison's disease confirmation. Loved your video and thank you for sharing.
So proud of you bro! Stoked to see how your gifts carry your story out to the world. God bless you bro, praying for you! Much love from Nanaimo!
Fun fact: I was totally sipping on some coke when you brought it up 🤣😅
My man!!! thank you so much bro. hahaha hey no shame in it, pretty sure I had one literally 2 days ago haha can't escape them 😂
Thank you again for sharing you story❤️👍
You bet! Thanks so much for watching!
So glad to have found your previous video and now I’m here on your next one!!! ❤️❤️❤️
I too have been recently diagnosed with Addisons (after being told, over the phone, that I had to go to a+e for an emergency injection 😂🤦🏻♀️).
This is a year after finding chronically low cortisol levels and a less than suboptimal response to the short synacthen test. I finally had everything repeated with a specialist and can’t believe it’s taken so long!!!
Now I’ve just been abandoned with the 3 x daily hydrocortisone (WHICH MAKE ME FEEL VILE) and still won’t actually be able to see this doctor in person until December (I’m in the UK). I’m begging to change to prednisone as been on this before for lupus and not had any side effects but nothing… 🤦🏻♀️🤦🏻♀️🤦🏻♀️😭
Fab videos and fab community and comments here! ❤️💪🏽
You've found a pretty large community here! Many many comments from people just like us. Hope you continue to advocate for yourself and get things situated!! :)
Omg your tan looks so good lol lol
Well done you ... we need more more more info please
I like your Addison's tan, I used to have it years ago but I lost it because I have Vitaligo and somehow it disappeared. I actually self diagnosed myself based on my sunless tan. I never knew that is a life treating desease. Now I know after I was in coma because of Addison's.
The hyperpigmentation is supposed to go away once you have been on a proper replacement dosing schedule. It is due to ACTH levels being heightened in response to low cortisol feedback, so once that is fixed your ACTH will lower again. Mine faded in a few months after I got my dosing right.
@@hollydaugherty2620 I thought primary Addison's had nothing to do with ACTH and the pituitary gland only adrenal insufficiency? Let me know if I am wrong.
@@creativefun4710 Steroids suppress your HPA therefore lowering ACTH.
We're you having any other symptoms during that time when you initially got sunless tan?
@@hollydaugherty2620 thanks for the input. So did you get this “tan” from just having adrenal fatigue from stress,etc or did you have Addison’s disease ?
I had to have both of my adrenal glands removed because of a relentless pituitary tumor. I say, "we cut out the middle man". 😆 I had to swap out Cushings Disease for Adrenal Insufficiency.
That's how I got my Addisons about 8 years ago after 3 brain surgeries to take out the pit tumor.
I enjoy your videos. I've got a great addisons tan too....silver linings :)
I've had Addison Disease for 49 years now...My health has been going down hill the last couple of months pretty bad
I recently went to my doctor for fatigue, horrible migraines, dizziness, muscle aches, and depression. I told him I wanted to be tested for Cushings or other autoimmune diseases. He done blood work and everything was normal besides my cortisol. I was at a 4 on the AM cortisol. Normal levels for the am is 10-20. He is sending me to an endocrinologist. What I thought may be Cushings is actually Addisons. Does anyone else have normal blood work but low cortisol?
I was diagnosed 14years ago with Addison’s disease
Aye bro i got this shit too keep up the good work.🤙🏻
Thank you for sharing your story. Do you know if there are any treatments for Addison’s Disease?? I’ve been looking into that but thought I would ask…
As far as I’ve been told, there are no cures for Addison’s at this time, only the management of symptoms through medication. Maybe one day!
Hi have Addison's since 2013. Had similar experiences. Very sick till was properly diagnosed from SA
My prayers are with you!
Brother❤️
Thanks for watching! :)
🤙 from Oregon
Hi Levi, I have Addison disease at the age of 16 and I really don’t remember when I was diagnosed I’ll have to ask my parents. I think it was 5th grade summer going into 6th grade. Looked back at the pictures of me I looked nothing like myself. I looked like skin and bones in the face. All I remember was I was laying in the couch, absolutely out of it watching SpongeBob and eating watermelon and next thing I know I was awake in the hospital drinking gross medicine Gatorade. Apparently I was in a coma for a week and a half, or 2? I don’t remember. But I was air lifted into the hospital. And stayed there for like a month connected to IVs. I had to spend a few days learning to walk again. Once I got out of the hospital a month goes by ( I have the worst luck ) I was riding my bike with my dad down to this outdoor restaurant and hit a light pole, knocked unconscious and straight back into the hospital. Pretty funny looking back on it know. I always drive past the light pole and talk trash to it 😂.
🤟🏻
I suffer from Addison's Disease. Nausea, Fatigue and just feel awful daily.
I am always scared for the next day because how awful I am going to feel.
I take 15mg hydrocortisone and .5mg of fludrocortisone in the morning. Afternoon 10mg hydrocortisone and night 5mg.
I have felt like really tired, weak, and having Nausea which they gave me and still take Zofran.
I am Anxiety, IBS this seems to be common. It comes and goes the feeling of state. I need to have Ritz crackers because i need food inside myself before
taking any medications. I am fine one minute and the next I look like I hadn't slept in a week. I toss and turn and just a mess. I always get messed up every year
I get sick easily so I was told to double up my hydrocortisone. I want to know how you deal with living a normal life because I am 36 now and was diagnosed in 2007
I am open ears.
What u do when u need too much stress??
🤙🏼
Levi brother! How are you doing now and are you living a good normal life since you have the right medication?
Hey! Since being put on medication, I've been able to live a super active and normal lifestyle. (Arguably better than before) Within the first week of being diagnosed I told my family that I didn't know it was even possible to feel this good!
My dad just had your sane symptoms. He gad to slowly have an iv drip after his sodium being so low!
But they never mentioned Addisons..?
I diagnosed a pt who was running around for diagnosis
Whice medications do u use bro??
Hydrocortisone and Fludrocortisone!
Can you tell me of any good doctors in upstate NY ? Anyone that has Addison’s??
Hi Levi,
I notice that you still look very tan, is this from your outdoor lifestyle? This is how l helped doctors to diagnose my son, I kept insisting that he looked too tanned. Then they checked the palms of his hands, the palm lines were brown. I believe the hyper pigmentation reduces in time but another doctor said that people with Addison's can retain a tanned look.
Levi how are you doing now ?
Tired of being told to shake it off and shut up 🤐
🤟🏻
🤙
You flippin legend. Love you bro ♥️