I too have Addisons Disease. Just found your story. I too almost lost my life right before diagnosed. I’ve had tons of people reach out to me who have just been diagnosed, which is extremely rare! The Lord is for sure pushing me to speak up more about my journey. Thankful to have found your story❤️
may I ask how exactly were you diagnosed I recently had my cortisol levels checked and they are very low... could that be addison's disease? I have an appointment with an endocrinologist on the 8th on next month
@@crystalr9633 hello any update? I dont think I have addison but I'm sure I have low cortisol since I've been through chronic stress for so many years and I'm now depleted exhausted just like a zombie. I have an appointment next month with an endocrinologist but I wasnt sent by my doctor I just know I need to check my adrenals.
@@rses916 I seen an endocrinologist and they say my cortisol is low because I'm on steriods for lupus... my tsh level for my thyroid is low too so they said I have hyperthyroidism but right now are just watching my numbers and haven't put me on any meds yet... I feel like a zombie too I have no energy at all and I'm always tired no matter how much I sleep
I too have Addison’s and didn’t get diagnosed until age 42 when I was at the end, fatal stage in a wheelchair struggling to live and breathe, or even hold my head up. I’m grateful for everyone sharing about Addison’s and adrenal insufficiency so others can get important, life saving help sooner. YashuaChrist blessings to all.
So who figured it out? I feel like I’m on a constant battle to call out the obvious before it gets worse and Dr’s aren’t able to diagnose their way out of a paper bag anymore. I had to self diagnose once and I’m on the verge of having to do someone else’s job a second time.
You are right. I saw hundreds of doctors and hand endless hospital stays with all the doctors telling me, “It’s nothing. It’s all in your head.” I was given a referral at my church to an out of pocket MD ND doctor in Santa Monica, California, who is familiar with JFK’s Addison’s Disease. He diagnosed me within 5 minutes of meeting me when I began to squat down after shaking his hand because I couldn’t stand more than about 30 seconds at this point without beginning to black out. He noticed this and my black lips, black gums, dark skin and immediately recognized I was at crisis stage of Addison’s Disease. He did blood tests and my ACTH was through the roof. He write a letter stating I had been medically neglected for decades and was now at risk of imminent death due to end stage Addison’s Disease. He started me on hydrocortisone and fludrocortisone right away and I started being able to stand without beginning to black out. His name is Dr. Allen Green in Los Angeles, CA. Tell him you have Addison’s Disease concerns. Also, Dr. Frank Schallenberger in Carson City, Nevada is extremely familiar with adrenal insufficiency issues and is assertive in addressing it. I ended up going to Mayo in AZ and saw the Endo named Curtis. Can’t recall his last name right now. He did a genetic test and said I had the genetic marker for autoimmune Addison’s related to Celiac which my mom had. My adrenals were notable shrunken in the CT scan confirming diagnosis and refining dosage of Rx. Even since my diagnosis I went to an ER once feeling like I was in crisis and no one there would listen to me needing a shot of solucortef and they knew nothing of Addison’s or adrenal insufficiency. They would only give me fluids and basic tests doing nothing. So obviously protocol on these issues are not known. Praying you and all in need get the help you need and deserve. Keep fighting and praying for your health equity! I’m doing much better gratefully now!
I also have addison's disease. People is telling me i have good tan, but no one know it's from disease. They think it's from the sun and sea. I also have social anxiety and changing moods all the time. I feel that i'm becoming crazy,because it affects my mental health also. Have addison's for 12 years now. Thank you for your story♥️ i wish you HEALTH🤗 and one question: what do you do for living, do you get tired quickly?
I just got back from the hospital and was diagnosed. My story is eerily similar to yours though perhaps not as severe, with a sodium of 110. Sharing your experience was so encouraging to watch right now. Praise Jesus he saved us both! Let me know if you have any tips for building back after this. Thanks again for sharing with us.
Thanks for posting. I have had Addison’s for nearly 27 years now. I have found that diet is extremely important and the older I’ve got, the less tolerant I have become to grains, wholemeal and that kind of stuff. It is without question highly beneficial to focus mainly on meat starchy vegetables and eggs. I’ve managed to retain my levels of fitness the whole time and still, at the age of 45 can do 20 consecutive pullups and 100 consecutive push ups (not to brag) so hopefully it’s doing something right! 😉
I had the opposite, Cushing's Disease, which is the production of too much cortisol due to a pituitary tumor. The neurosurgeon at MD Anderson couldn't get it all as it was too invasive by that point, so I had to have my adrenal glands removed. In essence trading one disease for another. That was 2009. 4 years ago I was diagnosed with stage 4 cancer. I was considering terminal and it was surmised that I'd likely not survive the treatment. I fought sepsis twice and spent months in icu. By the grace of God I'm still kicking . My biggest issue is bad doctors. I give them a 4 page medical history with the first page being a general summary. Few even look at it. I have 2 medical malpractice suits going for mistakes that are considered a "never" event in the medical field. You have to be your own best advocate, sadly with this disease that's not always possible. Make sure partners, friends, family know how to give the solu-cortef injection and how to explain your medical condition to medical personnel. ♥️
Hello ,can you tell me about your symptoms .I'm so confused rn cause my accupunter doc told me my adrenal hormones secreting low but he didn't said is it Addison disease or fatigue .my symptoms are lightheadness ,fatigue ,salt craving and darkening of skin
Mine started with abdominal pain and fatigue, I lost weight really fast and couldn’t stay awake, then my leg’s cramped up, headache that wouldn’t leave. Brain fog. Then I’d pass out anywhere. It was really scary, as a nurse for Mercy , luckily I had access to wonderful testing and an Cancer & hematologist NP saved my life by doing complete blood work up and started cortisol infusions , I’ve went through three adrenal crisis, all scary and came out of nowhere. I now. Take cortef, fludocort, and use prednisone as a stress dose when needed
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.
I commented on your initial video about my son's friend who was diagnosed today with AD. We are in Roanoke VA. So glad you're doing well and managing AD. Stay strong and keep the faith.
Dude. Great video. I was diagnosed a few months ago. I too like to go backpacking and climbing in the mountains. I use pill canisters, Garmin InReach(love this thing), and educate those with me on how to give shots. Also, key is telling those people with me how to recognize the signs of adrenal crisis. Because sometimes we might not know it’s happening. I’m still new to this and coping with it. It’s a big change for me. My Addison’s started as a result of cancer treatments. I have stage 4 metastatic melanoma. Treatments are going well but the Addison’s was a result. Oh well…the price of life. Thank you soooo much for your UA-cam channel. Jim
Thanks for sharing your experience and educating all of us. All information you give about Addison's disease is very helpful. Happy to see you in good health. God bless!
I was just diagnosed with Addisons back in December. The more I look into this disease the more anxiety I get. I’m trying to learn as much as I can but at the end of the day it scares me. I tried to explain the disease to my parents and how serious it can be but they just think I am being paranoid and said it wasn’t that big of a deal.
Hi Shelby, do not be scared you will learn to live with it, and if you take your medicine you will be fine. Your body needs time to get used to getting the medicine and finde the right amount of medicine you need. I have had Addison for 10 years so if you need to write to some one that knows what it is like - feel free to write. There is a lot to learn but you will get there :-) Br Kenn
The ppl in my life do the same . When my finger Nails are literally lifting off and my fingers are numb . Yet I’m also expected to do normal life stuff while dealing with symptoms 24/7
Levi thanks for the great video. Lovely to see that you are ok. Great medication strategy and glad to hear you have proven to yourself that a full life is still possible. Bit of a laugh… learning Premier Pro (hobby), got that stressed trying to teach myself masking that I had an adrenal crash and couldn’t move for two days! Just coming good now. I like the challenge, but I’m a perfectionist… bad combination! Keep putting out your videos - God definitely wanted you here!
Hey, what’s up Levi? I just saw your video. I got diagnosed with Addison’s about 25 years ago. It’s been tough to regulate it. Be nice to talk to someone that has it. I’ve never met someone that had it before.
One thing I have found is watching my caffeine intake. I was a caffeine junkie and I have learned as I age and get older caffeine intake matters and the low the amount the better I feel, but all of us try different things to help ourselves. Same thing with protein and carbs. High protein low carbs. Basiclly for me any recommendations of less swelling, less edma means less bone and joint pain. I also use the term eating clean and his definition is the same as mine trying to avoid processed foods. Someone once said don't eat it; if it; doesn't come from under the ground or off a tree......
In the USA if you pay for it yourself you can go to any independent laboratory and have an 8am Cortisol blood draw (has to be morning) and have results sent to your Dr.. Get a copy for yourself as well. If it's low then your Dr. should order an ACTH test.
I was lucky, ik had bad stomach flu for 3weeks, lost 10kg in 3weeks and had vomitting and diarrhea didnt have a crisis tho. Makes you wonder how rare a crisis is
It sounds so simple re splitting your medications with your friends due to your surroundings / circumstances etc. I would NEVER think of that! I am a nightmare with my doses I absolutely hate the and the whole splitting tablets / losing them etc. Love these videos! Hoping to be in a better place in a few months time once everything has settled and it just becomes a part of subconscious every day life!
You always gotta find a way to ease the nerves and make life more manageable! But I agree, medication management is a constant struggle, I'm not a fan hahaha
Thanks for the video!Your so helpful and positive! Me and my daughter appreciate what you're doing cause no doctor can solve practical and everyday problems!
I like how you mentioned that you notified your friend's of your condition and gave them the proper information they needed Incase of an emergency.. I've had Addison's all my life, so technically I don't even know what it's like to live without it 😂. More over ,like with anything in life, your going to have ups and downs, it's just part of the process, just don't forget ,we're survivers and we can pull through this .. I'd also like to recommend that anyone who's been diagnosed with Addison's Disease, to get themselves a medical alert bracelet,you can order one or get one from your Doctor. Also, be sure to carry your medical information on your person's in a wallet, or purse ,along with carrying extra steroids on you ,Incase of high stress situations. The key is to learn to listen to your body and know when to updose but to be prepped at the same time because an Addison's crisis is always random, kind of like when people have seizures,it just happens. These A.D.D. crisis, are also incredibly scary , I've had both auditory and visual hallucinations as the result of having a A.D.D.C.. . If possible, carry healthy snacks and Water/Pedialyte with you too
@@amandagray9661 if gotten the flu, didnt take extra mends maybe 5mg extra per day but not on life or death. I only raise my meds when i have fever or vomit
Hey, I live in Greenville, currently staying in Charlotte. I had Cushing’s disease and subsequently had an addisonian crisis at 22 in 2006. I had two crisis following surgery. Stupid endocrinologist and hospital’s fault in NYC. Never told me about it and didn’t give me enough meds after surgery. I couldn’t get diagnosed with the Cushing’s. I had to prove it on my own. After I finally got my surgery, 6 months post, they took me off the meds. They kept pushing for med withdrawal. I guess it worked for a few years. I was doing ok until 2014. I started getting very sick. Arrhythmias, flank pain, low blood pressure, low grade fevers, light sensitivity, stomach issues and unrelenting pain and fatigue. I’ve also stopped menstruating. I’m still like that today and getting worse. I’m at a point I can barely stand up. My cortisol keeps coming back within range but on the low side so they keep pushing the anxiety/depression bullshit or talking about fibromyalgia. They couldn’t even diagnose the fact that I was extremely dehydrated. I had to travel 3 hrs to MUSC to find that out from a nurse practitioner. Question to you or your endo, is it possible to be in adrenal distress at some kind of subclinical level where it is producing just enough to keep you alive, but yet you are not functional? My hair is falling out like crazy and when I eat I get even sicker. Like there’s not enough cortisol or aldosterone to process my food. I’m also getting scary chest pains and only electrolytes help. How can this NOT be adrenal distress?! These Dr’s are going to kill me ignoring me and I’m very scared! My emergency shot expired years ago! How can Dr’s be this stupid knowing my history?!
Hi Levi, I did the AIP Diet for 6months...it was so intense but I found it did eliminate some of my autoimmune side effects. I love my endocrinologist as well! She's great! I haven't yet travelled far away since having Addisons Disease but when I do ill be sure to use all your tips!
Does anyone have issues dealing with stress? Since I was diagnosed, I don’t tolerate stress well anymore. Even mild stress makes me sick. I get dizzy, lose my appetite, and heart palpitations. Not to mention anxiety or panic attacks. And I get a lot of acid reflux now. Almost daily. If so, do you know how to fix or cope with these issues?
I have adhd as well so i hyperfixate which means I’m always stressing and when a new bad thing piles on I become violently psyically ill . Soaked in sweat , while shivering , while vomiting / ect for like a day and a half
Thank you for making this awesome video. Do you catch colds/get sick more often then your friends? How often do you experience brain fog/ difficulty concentrating?
Absolutely! Thanks for watching! As a matter of fact, I’ve noticed that I’ve been sick even less than my friends who are healthy. I just got my first cold which was 3 years after my diagnosis! Must be due to the steroids. And I haven’t noticed any brain fog.
I was diagnosed with Schmidt’s Syndrome (Primary Adrenal Insufficiency & Hypothyroidism) thirty one years ago. Honestly I have lived a completely normal life ever since. While under stress or when sick, I double my hydrocortisone dosage for a few days. The only caveat that I have is to realize that the longer you take the steroids you have to be careful that your dose is not too high or you could be at risk of developing osteoporosis. If anyone is looking for a great, young endocrinologist in the Toronto area, I would be happy to share.
I have Addisons Primary, for the last 15 years I what they should make you aware of, is the medication causes diabetes, I was fought over this by healthcare professionals saying if I had Diabetes's it wouldn't be type 2 as the one I would have would be autoimmune related Type1 and the tablets dont cause diabetes 2 , 15 years later very slim as I keep healthy, and well guess what I have prediabeties and it would lead to diabeties 2 so the health care professional should give the warning on Addison diagnosis to make you aware to slow down on carbs, and eat healthier, I tried Keto with plenty of salt and fluids and still ended up in the ER due to electrolyte imbalance. its tough to turn it around, but I am trying still
Thank you so much.Greetings from England I'm very unlucky - the one side effect I would have loved from Addison ,is the one symptom I haven't got,namely a sun tanned skin!!! I do have the moon shaped face which takes care on eye wrinkles😂
I take Hydrocortisone 20 mg tablets and 0.1mg tablets of fludrocortisone for my Addison's. When I run out of the cortef (fludrocortisone) I will take licorice root extract to make up for this. What the licorice root does is raise my blood pressure so I can function for the day. Just have to remember to drink plenty of water and increase my salt intake either by drinking pickle juice, soy sauce or olive juice...all three of these are very high in salt which is great, I just wish that I could completely go 💯 natural so that I don't have to take these meds for my Addison's.
I was diagnosed late last year after going into crisis and being in a coma for 3 days. I felt really good coming out of hospital (weird) and then since have been feeling fatigued pretty much all the time. I work full time so I’m not bed ridden or anything but just never seem to feel good. Im on hydro and fludro cortisone and I still have the tan after nearly a year, idk I guess it effects everyone differently
I got celiac, had a digestive infection from drinking a starbucks energy drink, set my whole auto immune digestion off and I adrenal failure and had 3 episodes there before getting past the nurses arguing to get the doctor to give me a steroid shot.
Just been diagnosed with addison disease so still trying to learn about it what to watch for and any other material I need to know about it since it the first time I have heard about it and even people I know thank you for the information on what you do with your medicine incase of a emergency situation
I have adrenal insufficiency and Addison's and it's very tough but your not alone ... I had my thyroid taken out. This autoimmune disease is rough . I wish I was normal
firstly i got told that i had to take half a pill 3 times a day so that was pretty hard to hear cause i now had to remember to do that and if i didn't it wasn't gonna be good for me but then my parents got a call 4-5 hours later telling them that i didnt have to get pills 3 times a day i only need to take a full pill if im sick or anything like that so that was pretty good to hear but yh again thx for your story
I would add some sachets of electrolyte drinks to your travel kits. I find if I ever get sickness/ diarrhoea I go downhill very quickly. Hope you get to enjoy many more trips.
Hi, from day 1 of taking Hydrocortison, how long did it take for you to regain your normal energy level? Im taking Hydrocortison for 45 days already, first 30 days is 10mg and now im down to 5mg but my energy level is not yet 100% back. We have the same interest, I also do overland trips with my 4x4 but everytime I do this I still suffer from fatigue. Thank you
I was diagnosed at 43, 7 weeks after giving birth to my 6 child, Addison-Rae. I had an adrenal hemorrhage at 32 weeks pregnant, qt that time no idea what i had, and they said there is no way it would be that
I just found out i have this. I also have hashimoto’s. I am a momma of 5 and im worried to say the least. Please make more videos about this topic or if anyone can recommend any channel that can help me. 💜
I take vyvanse for ADHD and that makes it worse, my adrenaline gets way down and then I start getting woozy and dizzy. Mine is partial, not as bad as yours, during the summer, even when I don't stand in the sun, my skin would darken because my body needs adrenaline to help me sweat, so my adrenaline insufficiency gets worse in the heat. Have you noticed something similar? I would get spooked real easily too like just real jumpy and have anxiety about my fatigue I got from the adrenal lows. Did you feel bouts of wooziness sometimes too? With Addison's disease?
I just received my cortisol report and started hydrocortisone 2 days ago...my doctor is very careless, I'm still having chest pain, feeling nauseous, my hands are shaking, definitely electrolyte imbalance but my doctor just gave me nothing but hydrocortisone, this disease being rare taking a toll on me, i am struggling with my studies, my parents and teachers are just pressurizing me to study freaking hard,no one understands...i feel like disappearing from home, its awful...an awful helpless feeling...
So, I'm experiencing all of the symptoms, have been for a year and no doctor will listen. I just try to keep my salt and sugar up to keep going but I'm exhausted... Also have a tan and I'm a natural redhead and have the same tan as I did when I went to the beach in July and it's almost February... I live in Ga and the doctors think I'm lying and that I just go tanning... I'm a redhead dude, I don't tan... Idk what to do, any advice? Thankfully no crisis but honestly it's hard to keep up with a diet that I'm not ever hungry for...
@@kathya1956 Yes! And muscle mass too, but that was because my fatigue literally kept me on my tail for a year. I have a job now, because of necessity, and it's absolutely exhausting. And stressful because of customers yelling at things I can't control, so yay...
Can I ask you to get in touch please. I too was told to take Xanax I have been my own advocate for a healthy lifestyle with Addisons ! I would love to better understand what we can do to advocate for others. Spread awareness.
Skin darkening? Well I take vyvanse even with my adrenal insufficiency and it makes my skin darken even more especially when it wears off. I mix cortisol with vyvanse for a dopamine and adrenaline boost, I love my addisonian tan 😂😂 what ya talking about, looking as tan as Donald Trump!!
Levi, Have you had to increase your Hydrocortisone dose as time has progressed from when you were diagnosed? I'm wondering if adrenal function declines as we age for some of us. It seems that you weren't born with it. At what age do you think in retrospect that you noticed the first signs of it?
I just got diagnosed with it already I can't stand it I'm only allowed to drink 40 oz of liquid per day. And I'm confused because I wonder if people like me with Addison's disease is allowed to eat ice cream or does it count as another liquid
We need new adrenals. That brings me to mRNA shots that have been shown to go into adrenals in significant amounts. I’m waiting for many additions to our group. Hopefully not.
I have secondary addison diseases due to steroid therapy for stage 4 rheumatoid arthritis. could you please explain about secondary addison and how to handle it
Amen, Levi! My story down to missing slot - a huge deal for a TV reporter. 3 little pills a day make a huge difference. About that - more to come when I can use a computer and give you the whole story. Including one endo who swore my Addison’s was cured. (Spoiler alert: it wasn’t) Jim
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.
I just went to the colonoscopy and Endoscopy and they only found small hemorrhoid. I am stuck now with feeling nauseous, fatigue, weak is part of Addison's disease. When its manageable its one thing but when its not its purely awful. I had my Covid vaccine first dose of Moderna I was fine and the second dose just left me in the hospital and I feel that something awoke inside me. I remember March 31st I started living this nausea and vomiting everyday I was in a pure nightmare. I am waiting for a specialist 3 hours from me to see what is going on because all my levels are normal and I am always low in Potassium yet I take potassium pills daily.
I have an endocrinologist that once I became an established patient I was just another number . Anyways I remember my second visit I was told that she can't help me and that she has other patients to see.
Sounds to me you might need to go on a new medication. I was the same for years on hydrocortisone. My drs switch me to prednisone and it was night and day.
@@topacybits3576 well, I was told to take up to 60mg per day, throughout day. Now I can get away with 20-30mg. Mostly in morning. I feel fine. I am told to take more if sick.
Maybe slightly? Hard to tell, those close to me say it has a bit but I still get comments on it almost daily when I'm in public haha! My recent blood test has shown that my ACTH levels are still super high.
Y’all get sick when you miss one dose of medicine? I miss a lot of doses, gone on weekend vacations and forgot my hydrocortisone but don’t get sick. Maybe I don’t have it too bad lol
I am french/american and use both suggestions as one describes all in detail (USA) and the other (France ) which had treated many sickness over 3000 yrs with treatment that worked but with nl kxds why. I had an accident 2015 with 16 hr operation but bad post rehab. I went back to france which warned me of parkinson snd addisson as my back and glands look fine but will overwork due to accident. In 2020 i got parkinson and in 2021, i got addisson failure. I take steriod 0.10 flucadose snd PD lepadova. But i am not tired.. I git magnets for bone pain. I was told that even all is now available throuvh intdrnet, they have not found cures. they made me do what thry have done for 3000 yeard --MOVE both phyically and cognitivly. So i swim 3 hours a week walk 2 hours a week, teach french and english, go to art class and chair dance to fight fatigue to Rod steward etc. And i am not the only onr but 1 of many europeans. We want to know how to live with it. So my point was to suggest to visit older countries and see . Older countries do NOT have the cures but pragmatic experience and acceptance. It is your generstion that will work it out. Other than my slower gait no one sees my problem. I am 76 and france checks every month that i am following along with other patients. You travel. So you can see . The problem iz that we know the names but we work with symptons first. So ask about fatigue and that is europe main concern and strenght good luck Patricia Conner 1:00
I too have Addisons Disease. Just found your story. I too almost lost my life right before diagnosed. I’ve had tons of people reach out to me who have just been diagnosed, which is extremely rare! The Lord is for sure pushing me to speak up more about my journey. Thankful to have found your story❤️
Me too. Glad you are here, sharing and doing better.
may I ask how exactly were you diagnosed I recently had my cortisol levels checked and they are very low... could that be addison's disease? I have an appointment with an endocrinologist on the 8th on next month
Hi I have Addison's disease
@@crystalr9633 hello any update?
I dont think I have addison but I'm sure I have low cortisol since I've been through chronic stress for so many years and I'm now depleted exhausted just like a zombie. I have an appointment next month with an endocrinologist but I wasnt sent by my doctor I just know I need to check my adrenals.
@@rses916 I seen an endocrinologist and they say my cortisol is low because I'm on steriods for lupus... my tsh level for my thyroid is low too so they said I have hyperthyroidism but right now are just watching my numbers and haven't put me on any meds yet... I feel like a zombie too I have no energy at all and I'm always tired no matter how much I sleep
I too have Addison’s and didn’t get diagnosed until age 42 when I was at the end, fatal stage in a wheelchair struggling to live and breathe, or even hold my head up. I’m grateful for everyone sharing about Addison’s and adrenal insufficiency so others can get important, life saving help sooner. YashuaChrist blessings to all.
So who figured it out? I feel like I’m on a constant battle to call out the obvious before it gets worse and Dr’s aren’t able to diagnose their way out of a paper bag anymore. I had to self diagnose once and I’m on the verge of having to do someone else’s job a second time.
You are right. I saw hundreds of doctors and hand endless hospital stays with all the doctors telling me, “It’s nothing. It’s all in your head.” I was given a referral at my church to an out of pocket MD ND doctor in Santa Monica, California, who is familiar with JFK’s Addison’s Disease. He diagnosed me within 5 minutes of meeting me when I began to squat down after shaking his hand because I couldn’t stand more than about 30 seconds at this point without beginning to black out. He noticed this and my black lips, black gums, dark skin and immediately recognized I was at crisis stage of Addison’s Disease. He did blood tests and my ACTH was through the roof. He write a letter stating I had been medically neglected for decades and was now at risk of imminent death due to end stage Addison’s Disease. He started me on hydrocortisone and fludrocortisone right away and I started being able to stand without beginning to black out. His name is Dr. Allen Green in Los Angeles, CA. Tell him you have Addison’s Disease concerns. Also, Dr. Frank Schallenberger in Carson City, Nevada is extremely familiar with adrenal insufficiency issues and is assertive in addressing it. I ended up going to Mayo in AZ and saw the Endo named Curtis. Can’t recall his last name right now. He did a genetic test and said I had the genetic marker for autoimmune Addison’s related to Celiac which my mom had. My adrenals were notable shrunken in the CT scan confirming diagnosis and refining dosage of Rx. Even since my diagnosis I went to an ER once feeling like I was in crisis and no one there would listen to me needing a shot of solucortef and they knew nothing of Addison’s or adrenal insufficiency. They would only give me fluids and basic tests doing nothing. So obviously protocol on these issues are not known. Praying you and all in need get the help you need and deserve. Keep fighting and praying for your health equity! I’m doing much better gratefully now!
@@sadepennbrook we all have to self diagnose doctors really suck and people with chronic issues know it. I hate drs now.
Lucky you I'm 17 and was just diagnosed
I too got diagnosed at 42. I’m now 43 and going to my first Endocrinologist next week!
I also have addison's disease. People is telling me i have good tan, but no one know it's from disease. They think it's from the sun and sea. I also have social anxiety and changing moods all the time. I feel that i'm becoming crazy,because it affects my mental health also. Have addison's for 12 years now. Thank you for your story♥️ i wish you HEALTH🤗 and one question: what do you do for living, do you get tired quickly?
I just got back from the hospital and was diagnosed. My story is eerily similar to yours though perhaps not as severe, with a sodium of 110. Sharing your experience was so encouraging to watch right now. Praise Jesus he saved us both! Let me know if you have any tips for building back after this. Thanks again for sharing with us.
Thanks for posting. I have had Addison’s for nearly 27 years now. I have found that diet is extremely important and the older I’ve got, the less tolerant I have become to grains, wholemeal and that kind of stuff. It is without question highly beneficial to focus mainly on meat starchy vegetables and eggs. I’ve managed to retain my levels of fitness the whole time and still, at the age of 45 can do 20 consecutive pullups and 100 consecutive push ups (not to brag) so hopefully it’s doing something right! 😉
I had the opposite, Cushing's Disease, which is the production of too much cortisol due to a pituitary tumor. The neurosurgeon at MD Anderson couldn't get it all as it was too invasive by that point, so I had to have my adrenal glands removed. In essence trading one disease for another. That was 2009. 4 years ago I was diagnosed with stage 4 cancer. I was considering terminal and it was surmised that I'd likely not survive the treatment. I fought sepsis twice and spent months in icu. By the grace of God I'm still kicking . My biggest issue is bad doctors. I give them a 4 page medical history with the first page being a general summary. Few even look at it. I have 2 medical malpractice suits going for mistakes that are considered a "never" event in the medical field. You have to be your own best advocate, sadly with this disease that's not always possible. Make sure partners, friends, family know how to give the solu-cortef injection and how to explain your medical condition to medical personnel. ♥️
So sorry to hear of your troubles, but it's also inspiring how you've fought and won so many battles! Keep going ❤
Newly diagnosed and have been binge watching your videos for reassurance as I’ve been so overwhelmed. Thank you for sharing your story!
Hello ,can you tell me about your symptoms .I'm so confused rn cause my accupunter doc told me my adrenal hormones secreting low but he didn't said is it Addison disease or fatigue .my symptoms are lightheadness ,fatigue ,salt craving and darkening of skin
You are so welcome! You got this!
I had all of those symptoms!
Mine started with abdominal pain and fatigue, I lost weight really fast and couldn’t stay awake, then my leg’s cramped up, headache that wouldn’t leave. Brain fog. Then I’d pass out anywhere. It was really scary, as a nurse for Mercy , luckily I had access to wonderful testing and an Cancer & hematologist NP saved my life by doing complete blood work up and started cortisol infusions , I’ve went through three adrenal crisis, all scary and came out of nowhere. I now. Take cortef, fludocort, and use prednisone as a stress dose when needed
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.
I commented on your initial video about my son's friend who was diagnosed today with AD. We are in Roanoke VA. So glad you're doing well and managing AD. Stay strong and keep the faith.
Dude. Great video. I was diagnosed a few months ago. I too like to go backpacking and climbing in the mountains. I use pill canisters, Garmin InReach(love this thing), and educate those with me on how to give shots. Also, key is telling those people with me how to recognize the signs of adrenal crisis. Because sometimes we might not know it’s happening.
I’m still new to this and coping with it. It’s a big change for me. My Addison’s started as a result of cancer treatments. I have stage 4 metastatic melanoma. Treatments are going well but the Addison’s was a result. Oh well…the price of life.
Thank you soooo much for your UA-cam channel. Jim
Thanks for sharing your experience and educating all of us. All information you give about Addison's disease is very helpful. Happy to see you in good health. God bless!
I was just diagnosed with Addisons back in December. The more I look into this disease the more anxiety I get. I’m trying to learn as much as I can but at the end of the day it scares me. I tried to explain the disease to my parents and how serious it can be but they just think I am being paranoid and said it wasn’t that big of a deal.
Hi Shelby, do not be scared you will learn to live with it, and if you take your medicine you will be fine. Your body needs time to get used to getting the medicine and finde the right amount of medicine you need. I have had Addison for 10 years so if you need to write to some one that knows what it is like - feel free to write. There is a lot to learn but you will get there :-) Br Kenn
The ppl in my life do the same . When my finger Nails are literally lifting off and my fingers are numb . Yet I’m also expected to do normal life stuff while dealing with symptoms 24/7
If you take your meds you don't need to be scared.
Love the video bro! Your previous videos really helped me when i was diagnosed with Primary adrenal failure this year.
So glad to hear it!
Levi thanks for the great video. Lovely to see that you are ok. Great medication strategy and glad to hear you have proven to yourself that a full life is still possible. Bit of a laugh… learning Premier Pro (hobby), got that stressed trying to teach myself masking that I had an adrenal crash and couldn’t move for two days! Just coming good now. I like the challenge, but I’m a perfectionist… bad combination! Keep putting out your videos - God definitely wanted you here!
Hey, what’s up Levi? I just saw your video. I got diagnosed with Addison’s about 25 years ago. It’s been tough to regulate it. Be nice to talk to someone that has it. I’ve never met someone that had it before.
One thing I have found is watching my caffeine intake. I was a caffeine junkie and I have learned as I age and get older caffeine intake matters and the low the amount the better I feel, but all of us try different things to help ourselves. Same thing with protein and carbs. High protein low carbs. Basiclly for me any recommendations of less swelling, less edma means less bone and joint pain. I also use the term eating clean and his definition is the same as mine trying to avoid processed foods. Someone once said don't eat it; if it; doesn't come from under the ground or off a tree......
I love my green tea :( but I know cutting it back would help
Drink more milk .
I drink tons of soda drink like four cans a day but it’s so addicting
@@JaneDoeowo it sucks when you have a thought when you don’t want to stop because you’re so used to it
A little coffee helps with cortisol boost.
In the USA if you pay for it yourself you can go to any independent laboratory and have an 8am Cortisol blood draw (has to be morning) and have results sent to your Dr.. Get a copy for yourself as well. If it's low then your Dr. should order an ACTH test.
I think most of our pre diagnosed stories are pretty much the same.
Thanks for speaking up!!
I was lucky, ik had bad stomach flu for 3weeks, lost 10kg in 3weeks and had vomitting and diarrhea didnt have a crisis tho. Makes you wonder how rare a crisis is
It sounds so simple re splitting your medications with your friends due to your surroundings / circumstances etc. I would NEVER think of that! I am a nightmare with my doses I absolutely hate the and the whole splitting tablets / losing them etc.
Love these videos! Hoping to be in a better place in a few months time once everything has settled and it just becomes a part of subconscious every day life!
You always gotta find a way to ease the nerves and make life more manageable! But I agree, medication management is a constant struggle, I'm not a fan hahaha
Great video. Good idea to think about possible issues in advance and plan what to do.
Thanks for the video!Your so helpful and positive! Me and my daughter appreciate what you're doing cause no doctor can solve practical and everyday problems!
I like how you mentioned that you notified your friend's of your condition and gave them the proper information they needed Incase of an emergency..
I've had Addison's all my life, so technically I don't even know what it's like to live without it 😂.
More over ,like with anything in life, your going to have ups and downs, it's just part of the process, just don't forget ,we're survivers and we can pull through this ..
I'd also like to recommend that anyone who's been diagnosed with Addison's Disease, to get themselves a medical alert bracelet,you can order one or get one from your Doctor.
Also, be sure to carry your medical information on your person's in a wallet, or purse ,along with carrying extra steroids on you ,Incase of high stress situations.
The key is to learn to listen to your body and know when to updose but to be prepped at the same time because an Addison's crisis is always random, kind of like when people have seizures,it just happens.
These A.D.D. crisis, are also incredibly scary , I've had both auditory and visual hallucinations as the result of having a A.D.D.C.. .
If possible, carry healthy snacks and Water/Pedialyte with you too
I wouldnt say a crisis is random, theres always a cause for it
Except for when you become I’ll unexpectedly from the flu or in contact with another infection that you’d not expecting. Always carry an extra dose.
@@amandagray9661 if gotten the flu, didnt take extra mends maybe 5mg extra per day but not on life or death. I only raise my meds when i have fever or vomit
Thanks for the video :) I was diagnosed a year ago and both your videos have helped a lot!
Amazing, thanks for watching!!
Very helpful and informative!
Hey, I live in Greenville, currently staying in Charlotte. I had Cushing’s disease and subsequently had an addisonian crisis at 22 in 2006. I had two crisis following surgery. Stupid endocrinologist and hospital’s fault in NYC. Never told me about it and didn’t give me enough meds after surgery. I couldn’t get diagnosed with the Cushing’s. I had to prove it on my own. After I finally got my surgery, 6 months post, they took me off the meds. They kept pushing for med withdrawal. I guess it worked for a few years. I was doing ok until 2014. I started getting very sick. Arrhythmias, flank pain, low blood pressure, low grade fevers, light sensitivity, stomach issues and unrelenting pain and fatigue. I’ve also stopped menstruating. I’m still like that today and getting worse. I’m at a point I can barely stand up. My cortisol keeps coming back within range but on the low side so they keep pushing the anxiety/depression bullshit or talking about fibromyalgia. They couldn’t even diagnose the fact that I was extremely dehydrated. I had to travel 3 hrs to MUSC to find that out from a nurse practitioner. Question to you or your endo, is it possible to be in adrenal distress at some kind of subclinical level where it is producing just enough to keep you alive, but yet you are not functional? My hair is falling out like crazy and when I eat I get even sicker. Like there’s not enough cortisol or aldosterone to process my food. I’m also getting scary chest pains and only electrolytes help. How can this NOT be adrenal distress?! These Dr’s are going to kill me ignoring me and I’m very scared! My emergency shot expired years ago! How can Dr’s be this stupid knowing my history?!
Hi Levi,
I did the AIP Diet for 6months...it was so intense but I found it did eliminate some of my autoimmune side effects.
I love my endocrinologist as well! She's great!
I haven't yet travelled far away since having Addisons Disease but when I do ill be sure to use all your tips!
Does anyone have issues dealing with stress? Since I was diagnosed, I don’t tolerate stress well anymore. Even mild stress makes me sick. I get dizzy, lose my appetite, and heart palpitations. Not to mention anxiety or panic attacks. And I get a lot of acid reflux now. Almost daily.
If so, do you know how to fix or cope with these issues?
Acid reflux is so annoying
I have adhd as well so i hyperfixate which means I’m always stressing and when a new bad thing piles on I become violently psyically ill . Soaked in sweat , while shivering , while vomiting / ect for like a day and a half
I struggle with all these. Only just came across these videos.
Thank you for making this awesome video.
Do you catch colds/get sick more often then your friends?
How often do you experience brain fog/ difficulty concentrating?
Absolutely! Thanks for watching! As a matter of fact, I’ve noticed that I’ve been sick even less than my friends who are healthy. I just got my first cold which was 3 years after my diagnosis! Must be due to the steroids. And I haven’t noticed any brain fog.
I was diagnosed with Schmidt’s Syndrome (Primary Adrenal Insufficiency & Hypothyroidism) thirty one years ago. Honestly I have lived a completely normal life ever since. While under stress or when sick, I double my hydrocortisone dosage for a few days. The only caveat that I have is to realize that the longer you take the steroids you have to be careful that your dose is not too high or you could be at risk of developing osteoporosis. If anyone is looking for a great, young endocrinologist in the Toronto area, I would be happy to share.
I have Addisons Primary, for the last 15 years I what they should make you aware of, is the medication causes diabetes, I was fought over this by healthcare professionals saying if I had Diabetes's it wouldn't be type 2 as the one I would have would be autoimmune related Type1 and the tablets dont cause diabetes 2 , 15 years later very slim as I keep healthy, and well guess what I have prediabeties and it would lead to diabeties 2 so the health care professional should give the warning on Addison diagnosis to make you aware to slow down on carbs, and eat healthier, I tried Keto with plenty of salt and fluids and still ended up in the ER due to electrolyte imbalance. its tough to turn it around, but I am trying still
My god you are a life saver ❤ was feeling sooo low but yea you made me feel better thanks so much 😊crying with relief some one out there lol
Thank you so much.Greetings from England
I'm very unlucky - the one side effect I would have loved from Addison ,is the one symptom I haven't got,namely a sun tanned skin!!!
I do have the moon shaped face which takes care on eye wrinkles😂
I take Hydrocortisone 20 mg tablets and 0.1mg tablets of fludrocortisone for my Addison's. When I run out of the cortef (fludrocortisone) I will take licorice root extract to make up for this. What the licorice root does is raise my blood pressure so I can function for the day. Just have to remember to drink plenty of water and increase my salt intake either by drinking pickle juice, soy sauce or olive juice...all three of these are very high in salt which is great, I just wish that I could completely go 💯 natural so that I don't have to take these meds for my Addison's.
Hello,
Thanks for sharing your story with us.
May i ask what tests did you have to do to get diagnosed with addisons?
Thanks.
I was diagnosed late last year after going into crisis and being in a coma for 3 days. I felt really good coming out of hospital (weird) and then since have been feeling fatigued pretty much all the time. I work full time so I’m not bed ridden or anything but just never seem to feel good. Im on hydro and fludro cortisone and I still have the tan after nearly a year, idk I guess it effects everyone differently
Just learning about it now. Thanks dude.
I got celiac, had a digestive infection from drinking a starbucks energy drink, set my whole auto immune digestion off and I adrenal failure and had 3 episodes there before getting past the nurses arguing to get the doctor to give me a steroid shot.
Just been diagnosed with addison disease so still trying to learn about it what to watch for and any other material I need to know about it since it the first time I have heard about it and even people I know thank you for the information on what you do with your medicine incase of a emergency situation
When you weren't feeling well til your dosage was changed, was it lowered or raised?
Did u have gastrointestinal problems? Before taking medication and do u have these issue after medication?
Did u get tested in the evening? Is there any time recommendation to get tested ?
I have adrenal insufficiency and Addison's and it's very tough but your not alone ... I had my thyroid taken out. This autoimmune disease is rough . I wish I was normal
Thank you Levi. I really appreciate this video.
Yay! I live in Raleigh! Thanks for your videos!!!
I was sick 4 times in 1 month so i went and got checked and i just found out that i have it too and im 16 so thanks for your story
firstly i got told that i had to take half a pill 3 times a day so that was pretty hard to hear cause i now had to remember to do that and if i didn't it wasn't gonna be good for me but then my parents got a call 4-5 hours later telling them that i didnt have to get pills 3 times a day i only need to take a full pill if im sick or anything like that so that was pretty good to hear but yh again thx for your story
I would add some sachets of electrolyte drinks to your travel kits. I find if I ever get sickness/ diarrhoea I go downhill very quickly. Hope you get to enjoy many more trips.
Dr Barr in Pollocksville is amazing
Deeply appreciate this vdo. Thanku 🙏👍.God Bless 🌹
Hi, from day 1 of taking Hydrocortison, how long did it take for you to regain your normal energy level? Im taking Hydrocortison for 45 days already, first 30 days is 10mg and now im down to 5mg but my energy level is not yet 100% back. We have the same interest, I also do overland trips with my 4x4 but everytime I do this I still suffer from fatigue. Thank you
I was diagnosed at 43, 7 weeks after giving birth to my 6 child, Addison-Rae. I had an adrenal hemorrhage at 32 weeks pregnant, qt that time no idea what i had, and they said there is no way it would be that
Nice clear video, good effort.
I just found out i have this. I also have hashimoto’s. I am a momma of 5 and im worried to say the least. Please make more videos about this topic or if anyone can recommend any channel that can help me. 💜
We take medicine for addison disease throughout life or not
I take vyvanse for ADHD and that makes it worse, my adrenaline gets way down and then I start getting woozy and dizzy. Mine is partial, not as bad as yours, during the summer, even when I don't stand in the sun, my skin would darken because my body needs adrenaline to help me sweat, so my adrenaline insufficiency gets worse in the heat. Have you noticed something similar? I would get spooked real easily too like just real jumpy and have anxiety about my fatigue I got from the adrenal lows. Did you feel bouts of wooziness sometimes too? With Addison's disease?
I just received my cortisol report and started hydrocortisone 2 days ago...my doctor is very careless, I'm still having chest pain, feeling nauseous, my hands are shaking, definitely electrolyte imbalance but my doctor just gave me nothing but hydrocortisone, this disease being rare taking a toll on me, i am struggling with my studies, my parents and teachers are just pressurizing me to study freaking hard,no one understands...i feel like disappearing from home, its awful...an awful helpless feeling...
So, I'm experiencing all of the symptoms, have been for a year and no doctor will listen. I just try to keep my salt and sugar up to keep going but I'm exhausted... Also have a tan and I'm a natural redhead and have the same tan as I did when I went to the beach in July and it's almost February... I live in Ga and the doctors think I'm lying and that I just go tanning... I'm a redhead dude, I don't tan... Idk what to do, any advice? Thankfully no crisis but honestly it's hard to keep up with a diet that I'm not ever hungry for...
speak to another doctor as im having the same issues with my doctor not ever listening properly
Make an appoinment with an endocrinologist and be tested for cortisol levels and Addison’s disease
Ask for a bloodtest and let them send it to a hospital. Thats how i got diagnosed very Quick.
Have you lost a bunch of weight?
@@kathya1956 Yes! And muscle mass too, but that was because my fatigue literally kept me on my tail for a year. I have a job now, because of necessity, and it's absolutely exhausting. And stressful because of customers yelling at things I can't control, so yay...
Can I ask you to get in touch please. I too was told to take Xanax I have been my own advocate for a healthy lifestyle with Addisons ! I would love to better understand what we can do to advocate for others. Spread awareness.
Thanks for this video
Is it possible to have Addison's without the tan?
Skin darkening? Well I take vyvanse even with my adrenal insufficiency and it makes my skin darken even more especially when it wears off. I mix cortisol with vyvanse for a dopamine and adrenaline boost, I love my addisonian tan 😂😂 what ya talking about, looking as tan as Donald Trump!!
Levi,
Have you had to increase your Hydrocortisone dose as time has progressed from when you were diagnosed? I'm wondering if adrenal function declines as we age for some of us. It seems that you weren't born with it. At what age do you think in retrospect that you noticed the first signs of it?
How u feel
I just got diagnosed with it already I can't stand it I'm only allowed to drink 40 oz of liquid per day. And I'm confused because I wonder if people like me with Addison's disease is allowed to eat ice cream or does it count as another liquid
How can we cure this shit? Do you alos get jumpiness st night like u will twitch wen fslling as leep sometimes?
Man I don't know, hopefully there will be a cure one day! I do experience that, not sure if it's due to addisons or not.
Our cortisol should be low at night and high in morning. Don’t recommend taking hydrocortisone at night. That’s what I do.
We need new adrenals. That brings me to mRNA shots that have been shown to go into adrenals in significant amounts. I’m waiting for many additions to our group. Hopefully not.
@@kathya1956I take prednisone now but it long lasting compare to taking hydrocortisone multiple everyday
I have secondary addison diseases due to steroid therapy for stage 4 rheumatoid arthritis. could you please explain about secondary addison and how to handle it
Hi mam...
I also have Addison's disease since 2019
You and me both!
Amen, Levi! My story down to missing slot - a huge deal for a TV reporter. 3 little pills a day make a huge difference.
About that - more to come when I can use a computer and give you the whole story. Including one endo who swore my Addison’s was cured. (Spoiler alert: it wasn’t)
Jim
I've had Addison's for 15 years,was diagnosed at 16
Have u ever had a crisis?
@@topacybits3576 nope,only time I've had a 100mg shot of solu-cortef was when I was in hospital with pneumonia,but no never had a crisis
@@jamierossiter6159that’s pretty much a crisis
@@adamdavis5383 oh haha well then yes I've had a crisis😁
Do you experienced lack of motivation or sadness/depression or anxiousness with Addison disease?
I got diagnosed at 32
I would imagine daily caffeine intake would not be good for this condition.
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.
Maybe need to tweak your medication. Go up in hydrocortisone maybe. More in early day.
I just went to the colonoscopy and Endoscopy and they only found small hemorrhoid. I am stuck now with feeling nauseous, fatigue, weak is part of Addison's disease. When its manageable its one thing but when its not its purely awful. I had my Covid vaccine first dose of Moderna I was fine and the second dose just left me in the hospital and I feel that something awoke inside me. I remember March 31st I started living this nausea and vomiting everyday I was in a pure nightmare.
I am waiting for a specialist 3 hours from me to see what is going on because all my levels are normal and I am always low in Potassium yet I take potassium pills daily.
I have an endocrinologist that once I became an established patient I was just another number . Anyways I remember my second visit I was told that she can't help me and that she has other patients to see.
@@jamescarlosgalluzzo9394 look up Steve Kirsch
Sounds to me you might need to go on a new medication. I was the same for years on hydrocortisone. My drs switch me to prednisone and it was night and day.
I found I was taking too much hydrocortisone. It was also increasing by blood sugar.
How much were u taking?
@@topacybits3576 well, I was told to take up to 60mg per day, throughout day. Now I can get away with 20-30mg. Mostly in morning. I feel fine. I am told to take more if sick.
@@kathya1956 damn, who told u that 60 is way to much, i take 25mg a day.
@@kathya1956 for how long u had AD?
@@topacybits3576 my doctor told me to take 60
What do you think are the long term affects of covid with addisons disease?? I was diagnosed at age 2 im now 49 got covid 1/17/2022
Do have any long term affects by using steroids?...
I dont sleep more then 4 to 5 hours a night...Had to get all my teeth pulled from so long on the Steroids plus have brittle bone disease
Pls tell what is your pottassium and sodium levels
@@scottseymour780are you in pain constantly
Most days in a moderate amount of pain...Just learned to deal with it
If we have medication shortages. We are truly f**ck*d.
That’ll never happened
@@adamdavis5383it absolutely happens . My pharmacy runs out multiple times .
@@moyaxoxo5923 then you go to the hospital for a shot. And you should always have a reserve
Did you have depression?
In a way I guess I did, I would say it was more a case of extreme hopelessness more than anything.
Has your tan reduced?
Maybe slightly? Hard to tell, those close to me say it has a bit but I still get comments on it almost daily when I'm in public haha! My recent blood test has shown that my ACTH levels are still super high.
@@LeviVaageneshow u been
Primary adrenal insufficiency statesville nc area and Christ follower
Do you know if smoking is bad for you, when you have addison
Smoking is always bad for you what do you mean 😂
I have Addison and am allergic to All steroids
so what do you do?
Y’all get sick when you miss one dose of medicine? I miss a lot of doses, gone on weekend vacations and forgot my hydrocortisone but don’t get sick. Maybe I don’t have it too bad lol
That's extremely risky. You can go into adrenal crisis from skipping doses.
I am french/american and use both suggestions as one describes all in detail (USA) and the other (France ) which had treated many sickness over 3000 yrs with treatment that worked but with nl kxds why. I had an accident 2015 with 16 hr operation but bad post rehab. I went back to france which warned me of parkinson snd addisson as my back and glands look fine but will overwork due to accident. In 2020 i got parkinson and in 2021, i got addisson failure. I take steriod 0.10 flucadose snd PD lepadova. But i am not tired.. I git magnets for bone pain. I was told that even all is now available throuvh intdrnet, they have not found cures. they made me do what thry have done for 3000 yeard --MOVE both phyically and cognitivly. So i swim 3 hours a week walk 2 hours a week, teach french and english, go to art class and chair dance to fight fatigue to Rod steward etc. And i am not the only onr but 1 of many europeans. We want to know how to live with it. So my point was to suggest to visit older countries and see . Older countries do NOT have the cures but pragmatic experience and acceptance. It is your generstion that will work it out. Other than my slower gait no one sees my problem. I am 76 and france checks every month that i am following along with other patients. You travel. So you can see . The problem iz that we know the names but we work with symptons first. So ask about fatigue and that is europe main concern and strenght good luck
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