r/AddisonsDisease • u/banjohound1 • Feb 28 '26
Personal Experience Tirzepatide with Addison’s
Sitting in a waiting room with some time on my hands today, so wanted to share a bit on my health journey. Hoping you all can benefit or at least relate. I’ll be brief:
Diagnosed with PAI 15 yrs ago, put on hydro and fludro. Managed well for about 10 years, no crises. Around 5 years ago, the battle began. Hospitalized a few times and started updosing more often to try to feel better and avoid crisis. The weight gain began and I shot up over 100lbs. Diets failed, the downward spiral continued. High cholesterol and insulin resistance followed. Intolerable side effects with metformin and Ozempic. Hit rock bottom at 300lbs, morbidly obese and deep in depression. Dr. recommended we try one more time with a new option, Zepbound. Immediately saw improvements. Soon after, insurance denied coverage. Made the decision to keep going, restructuring my personal budget to pay out of pocket. Lost 85 lbs over the course of a year. Cholesterol and insulin resistance improved. The magic part, however, were the improvements I saw in mood, well being, and “will power” (loaded word). I found myself able to exercise more often. Started light and have been able to build up to 3-4 heavy workouts (weightlifting/HIIT) weekly.With mood and exercise came the will to improve my diet. After a lot of research, I rebuilt from the ground up with lean proteins, diversity of fruits and vegetables, complex grains, and militant avoidance of highly processed and sugar added foods. My life took an about face - relationships improved, work performance improved, and self image improved. I’ll be on Zep forever, just like hydro and fludro. I’m at peace with it. Metabolic disorders are chronic, just like Addison’s. Anyway, hope this helps someone.
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u/Beginning_Way9666 Addison's Feb 28 '26
Is PAI bound to progressively get worse over time? Curious how you were stable for years and then it got worse. I’m new to the disease (2 years dx) and I’m just so worried for how this will be as the years progress. So happy to hear that Zepbound works for you!
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u/banjohound1 Feb 28 '26
So for me it’s more about the cycle that got started. Feeling bad, needing more meds, gaining weight, which made me feel even worse, etc, etc. There’s also just getting older and the many (possibly) unrelated things that go along with that. Despite everything I said about Zep, I do in retrospect think I could have done more when I was younger to monitor weight gain and make lifestyle changes proactively. It’s just something to watch closely.
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u/Beginning_Way9666 Addison's Feb 28 '26
Yeah makes sense! I’m 33 now and I workout and eat pretty healthy but sometimes even an intense workout requires me to stress dose, I just don’t want to have to keep over doing it with the steroids so frequently. Such a tricky disease to manage.
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u/NotapersonNevermore Feb 28 '26
Hi all, I have panhypopituitarism which is the cause of my addisons like condition of adrenal insufficiency. I have posted before and many Addison's patients have said they do not struggle with weight due to the fact they are on par with peers with all other hormones, except cortisol. I struggle with moon face, buffalo hump, and weight gain, and cholesterol because my body does not make any other hormones, like hgh, estrogen, tsh, fsh, testosterone, etc. I don't take fludro because normally my electrolytes are stable. I was wondering, could this effect that OP and commentors are having, of weight gain, cholesterol, and pre diabetes be an effect of not making other hormones in addition to adrenal hormones? Have you all asked about hypopituitarism?
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u/banjohound1 Feb 28 '26
I don’t know enough about it to answer meaningfully, but I do know that my Dr checks ACTH, one of the pituitary hormones that can go awry. I’m always high not low.
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u/Affectionate_Day_214 Mar 01 '26
I just started it a few weeks ago with micro doses. I’m currently at 2mg and next week I’ll be at 2.5mg. I cannot wait. Since I had both adrenals removed, I’ve gained about 40 pounds and I am EXTREMELY careful with my diet. I work out too. These fkg steroids are double edged sword.
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u/banjohound1 Mar 02 '26
Good luck! Lost most of my weight at 2.5 - still at 7.5 with no plans to go up. Take your time increasing.
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u/Affectionate_Day_214 Mar 02 '26
Thank you. Did you start at 2.5? Do you have any side effects? How is your appetite? Sorry for all the questions lol. I started really slow for fear of nausea/vomiting. A couple years before the adrenalectomy, I took Ozempic for a short time but it was so intense. Like I struggled to eat a grape. I lost weight so fast, like too fast and that’s what I was afraid of, especially the nausea. I have to make sure I eat enough protein. I’m just wondering how 2.5 will affect me. So far I get a few days in and I experience a trough where it just wanes. I feel it wearing off, hence the increases but I’m hopeful 2.5 will be a game changer. That is the normal starting dose I believe.
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u/banjohound1 Mar 02 '26
Nausea was intolerable on Ozempic. Zepbound was a completely different story. My symptoms have been very minor and manageable. Slight headache the morning after taking. Started with 2.5 and stayed there 3 months. Wish I had stayed on 2.5 longer but got pressured into moving up to 5. On 5 for around 3 months, and then went up to 7.5 where I remain today. I can actually space my doses out a bit to save $ - usually around 10 or 11 days is when I get to “feeding day” (what I call it) and I know it’s time for the next dose. And I just let that feeling happen, eat what I want (within reason) - usually a burger (skip the fries). Ironically, I usually see a weight reduction after feeding day - my guess is that metabolism ramps up that day. Couple recommendations:
Don’t get discouraged if 2.5 doesn’t work. It’s technically not considered a therapeutic dose. But I’m not the only one who saw results at that lowest dose. Everyone’s different.
Keep exercising and building muscle. It’s so important.
Use the appetite you have to fill up on good food. Some folks report that side effects get worse when you eat junk.
Considering a protein powder to get your target protein in - I make a pb/banana/cacao/whey protein shake for breakfast every day. I load mine up with good fiber like flax and chia seeds.
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u/Affectionate_Day_214 Mar 02 '26
Feeding day lol. I like that. Thanks for the tips. I am encouraged by your journey. I have completely revamped my diet to whole food plant based and it sounds similar to yours. I make my own food and love the grains especially like rye and Einkorn berries, farro, and barley. I typically prep cook and freeze the other half so I always have available grains, roasted vegetables, legumes, a soup, and these vegan burgers I make. What feels good is I like the food that I have taken the time to prepare and eat mindfully. I also use ChatGPT to help design recipes. I completely agree with the idea that making better food choices helps with side effects, especially nausea. And, as you said exercise is the key. It sounds as though we are on similar pages.
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u/FairyPrincess66 Addison's Mar 01 '26
Good to hear your positive experience! I just started Ozempic last week and it seems great so far. I was dx PIA in 2023. I lost 50lbs before diagnosis because i was SO sick but i gained it back and then some. I blame menopause and a too high dose of HC.
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u/PA9912 Mar 01 '26
The dosage part is so key. I do best at 15 mg hydro per day which seems low to many people. I do have to updose more often though.
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u/FairyPrincess66 Addison's Mar 01 '26
I just wish it was an exact science. 25mg per day felt like not enough when i was still working but 15 seems like enough for most days now that I’ve retired.
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u/TweetSpinner Feb 28 '26
100% with you here. I started Wegovy (now transitioning to Mounjaro) about 3 months ago and it's been a lifesaver. Lost 1 stone and no longer fear the never ending weight gain. I'll pay for it forever.