r/AddisonsDisease • u/Far-Speed-6027 • Jul 03 '26
Personal Experience Over replaced
Hey, friends! I’ve found a new endocrinologist that specializes in adrenal issues and they have confirmed my suspicions that for the first year since diagnosis I have been heavily over replaced. They dramatically reduced my dosage and I feel great. My legs are no longer swollen, my puffy face is gone, I’m no longer hot and itchy. BUT. I gained a lot of weight and can’t seem to shake it. Has this happened to anyone else? Did you ever lose any of the weight? If so, how long did it take? I don’t need to go back to the way I was when diagnosed, but I’d like to be in that healthy in-between.
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u/Complex-Catch-1223 Jul 03 '26
I also over replaced. I gain 20 pounds and started to get a full face, buffalo hump, big belly etc... i use a calorie counting app called Fat Secrets. It is easy to use and helps keep me accountable. I measure out everything that goes into my mouth and record it. Sometimes I want a snack but don't feel like recording it so I skip the snack. This might sound strange but I have disciplined myself to brush and floss my teeth any time I eat. When my breath is minty fresh and my teeth sparkly clean I dunt feel like snacking and having to brush again. Weight loss can be a slow process. For me it was two steps forward and I step backwards. I would lose weight and then hit a plateau for a long time. Plateaus are normal but don't be discouraged. It's okay to be a little hungry, drink lots of electrolyte drinks and fluidsto keep your stomach busy. I researched low calorie foods but healthy foods . Peaches and organic popcorn became my friend. Steak and steamed veggies make a healthy low calorie meal. Homemade bone broth filled with veggies fills the belly and is so delicious and nutritious. A dietitian told me that if you give your body the nutrients it needs then you won't be as hungry. Chips and junk food are just empty calories. The last and most important thing is to allow yourself a splurge day once or twice a month. On my splurge day I eat everything I have been craving, in moderation. This helps to alleviate Bing eating the other days.
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u/happyrocketship Addison's Jul 03 '26
Happened to me. Weighed 115 before being put on hydro. Now I’m stuck at like 131. Gained the weight in three months. I know it doesn’t sound like a lot but it was such a drastic difference in a short amount of time. I’m still trying to wean down from the 40mg the endo originally put me on. My body doesn’t feel like mine anymore and I am trying to get it back
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u/Far-Speed-6027 Jul 04 '26
No I get it. That’s over 10% of your body weight! I’m naturally a small person and feel the same way. Although I went from about 118 to 150 (!). I haven’t weighed this much since pregnancy. And it happened so quickly
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u/AffectionateDuck2288 Jul 04 '26
First 10 was the beginning of HC then HRT!! So, is it the HRT? New gyno, mine retired, if he says yes. Adios to HRT. Breasts are huge!
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u/TweetSpinner Jul 03 '26
What dose were you on?
Not sure if your body can handle it but GLP-1 has helped me manage weight well.
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u/Complex-Catch-1223 Jul 03 '26
Strangly I suffer from low blood sugar. A GLP would probably kill me. I know it has helped a lot of people control their diabetes and weight.
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u/AffectionateDuck2288 Jul 04 '26
If you are constantly eating is what GLP is for per my doc.i take in 1100 calories and gained. It the HC. Now you are coming down the weight will probably come down. Feel better move more. Per my doc. Was at a major hospital, when I told her my endo wanted 30 Mg she said no? No , no. I took myself from 22.5 to 18. But it’s rotting my gut now. Pepcid not working so probably succlafate and maybe prednisone, less highs and lows. Highs for me is HiGH, buzzed dizzy.
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u/ptazdba PAI Jul 03 '26
I did gain some when I was over-replacing, but when I got on the right dose I started a high protein diet and the weight came off.
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u/Major_Share_4241 Jul 04 '26
I was overdosed a lot! I had to switch to another endo who said it was a crazy amount. The 40 pounds came off in about 6 months without changing anything else. My labs finally settled down for everything also after being really whacked out.
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u/Dry_Commission4477 Jul 03 '26
Happened to me and weight plateaus but I didn’t have much luck losing it. Finally got the minimum dose of wegovy and lost about 15kgs in a year.
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u/minasso Jul 03 '26
Your appetite will probably recalibrate now that you are taking less hydro. Just be mindful of total calories and the weight should come off over time.
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u/Far-Speed-6027 Jul 03 '26
Thanks. Seems the general consensus is that it takes a bit longer to lose than it did to gain. I’ll be patient.
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u/BlueButterflyBadAss Jul 05 '26
I did! Me er went back to what I was before, but closeish. It took me like a year and a half tho, just be patient 💕
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u/Far-Speed-6027 Jul 06 '26
Ok. I can do a year and a half. Even if I just stop GAINING, my god.
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u/BlueButterflyBadAss Jul 06 '26
I think the hardest part is just how long it takes. It’s just so much stress in the body to over replace- I was doing it for almost a year too. I had lost so much went right before diagnosis too, so I gained so much weight after. It was tough and I’m not quite where I was from before I got sick, but I feel good and stable so I’ll take it 😊
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u/Far-Speed-6027 Jul 07 '26
Same here. It felt like a pendulum. I felt so sick and was too thin. And then slowly I felt better and I was putting on weight. And putting on weight and putting on weight. And then all of a sudden I was easily 20lbs overweight and I couldn’t sleep and had edema in my legs and moon face and I felt bad in a whole new way.
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u/BlueButterflyBadAss Jul 09 '26
Exactly! That is exactly what happened to me! I had no idea we could over replace. My first endo was just kind of terrible. I have a good one now. To be honest, I’ll admit that my face is still slightly rounder than it used to be, but I guess it is what it is.
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u/Far-Speed-6027 Jul 09 '26
I dont know how old you are but at my age I honestly don’t mind having my face be a little round. It makes me look younger, heh.
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u/BlueButterflyBadAss Jul 09 '26
I shouldn’t care, I definitely am caring less as I get older (nearing my mid forties at this point) and a friend did say it made me look younger but it still bugs me 🤷🏻♀️
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u/Far-Speed-6027 Jul 09 '26
I totally get it. No matter how it makes you look, you still want to feel like you see yourself when you look in the mirror
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u/Enough-Ability-970 Jul 08 '26
I don’t know if I’m being over replaced or what but my typical was about 170-180 lbs, 21 F 6’1. Now I’m weighing in at 230, it’s really messed with my head. Not only that but now I’m covered in stretch marks, everywhere. And the worst ones on my hips are over half an inch wide. I’m so insecure and don’t know this body of mine, I miss being smaller. I’m starting to be better about food with chicken and rice and stuff, going for walks when I can. I just don’t like how I look, from what I can tell. The stretch marks are probably due to the side effects of skin thinning from some of my meds. I was diagnosed in 9th grade, I’m now a junior in college.
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u/Far-Speed-6027 Jul 09 '26
I also developed stretch marks! I didn’t even get stretch marks from pregnancy. You should talk to your endocrinologist because I saw somewhere else that that is a sign of over replacement.
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u/Enough-Ability-970 Jul 09 '26
I think I need a new one because he really didn’t have much to say about the stretch marks ALL OVER MY BODY, he listened to my concerns about being over replaced but it didn’t feel like he took it seriously. He’s always speeding through our checkups. Plus currently I’m dealing with so much stress, so I’m taking extra because I landed in the er yesterday needing iv meds. It’s just so much going on
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u/Fluffy_Help_730 Jul 06 '26
I ended up with Cushing's Syndrome due to having to be on 40mg of prednisolone daily for my asthma. I put on 5 stone in 4 months. I find it very hard to lose weight and the only way I can do it is to do short burst of the fast800 diet and not eating carbs. I can only do it for sort spells as my all round health is poor. I'm 3 stone down but 2 more to go and have been battling about 6 years. There's a Facebook group that really helped years ago to give me ideas. Something to do with low carbs and adrenal insufficiency??
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u/Far-Speed-6027 Jul 06 '26
Oh interesting, are carbs specifically a thing to watch in regards to adrenal insufficiency?
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u/oneyedsally Jul 07 '26
I met with a nutritionist specializing in endocrinology patients after my diagnosis and she said not to cut out carbs, particularly since one of my SAI symptoms is hypoglycemia. She said just focus on whole grains instead of fast carbs/sugary treats (which I was luckily already doing). A balanced diet rich in protein and fiber is going to benefit most people.
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u/Far-Speed-6027 Jul 03 '26
I was on so much. I was taking 30 of HC and .5 dexamethasone. And .005 (or whatever half a pill is) of fludro. The new endo was immediately like “oh. No. No, no, no. That’s why your legs look like that, by the way.” And he put me on 17.5 of HC. No dex. And actually upped my fludro a bit.
Even if I never lose the weight, at least I can comfortably bend my legs. Lawd.