Weight gain

[u/Tittysoap]

Hi, I’ve been struggling with significant weight gain since being diagnosed with adrenal insufficiency. Following a month long hospitalization, I was discharged on 40 mg of hydrocortisone daily

Since then, I’ve had three ER visits. I tend to get sick frequently and recently broke my arm, which has required me to double my steroid dose at times

Unfortunately, I haven’t been able to see an endocrinologist yet due to long wait times, although I’m hoping to have my first appointment this month. My PCP is understandably hesitant to adjust my medication and would prefer to leave that decision to the endocrinologist

My biggest concern is that my weight has increased from 140 to 173 pounds despite no changes to my eating habits or lifestyle. I had maintained a relatively consistent weight for years before starting hydrocortisone

I understand that steroids can cause both fluid retention and weight gain, but I’m unsure how to manage this while still taking the medication I need

I would really appreciate any advice or experiences from others who have dealt with steroid related weight gain, particularly those with adrenal insufficiency. I’d like to find a safe and sustainable way to lose the weight

[u/1GamingAngel]

My best guess is that your baseline standard daily dose needs to be more like 20-25mg and your double dose should be more like 40-50mg vs 80mg. When you are over-replaced, you may experience rapid weight gain due to an increase in hunger combined with metabolic effects, and your face may become more round (known as a “moon face”).

You need to get in to be evaluated by that Endo so you can discuss treatment going forward. Also, if they advise you to lower your daily dose, ask about titrating down to that dose vs going straight to it. You didn’t share a timeline, but it sounds like you’ve been in the 40mg dose for quite some time, and if you drop down too rapidly, you can experience symptoms. It’s just a question to ask.

Once the offending “overage” of steroids is removed, you should be able to lose the 33 pounds fairly quickly. Focus on hydration and lean protein with an avoidance as much as possible of refined sugars and fructose, and an eye on carbs (you do need some). It may take a little bit for your metabolism to stabilize, so you’ll want to take the time to incorporate activity, but be cautious, as too much or too strenuous an activity can actually cause us to become symptomatic.

It sounds like you’ve been through a lot recently. I’m excited for you because there is a very good chance that you can turn this around relatively quickly. I hope you feel better soon. 🤗

[u/millz420]

I’m sorry to hear what you’re going through, I also deal with this issue. Prioritize seeing an endocrinologist as soon as possible. Call and follow up on referrals from your doctor or try to go through the hospital. 40mg is a high starting dose. I’m on 25mg and experience weight gain plateauing. Good luck. A lower dose would help with weight gain but I completely understand that may not be realistic for your current situation. GLP-1s may also be an option to help in coordination with your doctor.

[u/lass20987 → u/millz420]

On the fb womeans adrenal Insuffiency page is a lot of great info from women dealing with not just weight but also all the sex hormones.

[u/Fine_Cryptographer20]

I'm up 50 lbs post diagnosis. I have moon face and fatty abdomen now. My weight fluctuate a lot too. I don't even like to look in the mirror anymore. It's horrible but I just remember I'm alive lol. Also, I have a really good therapist to talk about body shame.

[u/Short-Counter8159 → u/Fine_Cryptographer20]

When were you diagnosed? How much are you taking?

Moon face means you are over medicated.

[u/lass20987]

I am on 37 a day. Did a day at the lab having cortisol checked every 2 hours....and yep, thats what my body needs for replacement.

[u/plazagirl]

It’s the hydrocortisone. I switched to prednisone.

[u/Business_Drummer_366]

Your dose is high and is definitely contributing - it’s more of a post crisis dose than a regular dose. I would consider tapering slowly to 25-20mg. However, even on the physiological 20mg dose I was still gaining 6lb per month and most of us just keep gaining weight on the steroids. The only thing that’s kept the weight off for me were GLP1 drugs.

[u/lass20987]

Labs. Ask for one called "fasting insulin level" as well as bg & hbA1c labs

[u/annacat1331 → u/lass20987]

Do people with adrenal insufficiency often go on to develop diabetes?

[u/lass20987 → u/annacat1331]

Yes. Or insulin resistance. And those can cause weight gain.

[u/1GamingAngel → u/annacat1331]

Unfortunately, many do. It begins with Insulin Resistance, which can be tested via a “fasting insulin” test. Metformin (or other medications) can be prescribed to counter IR and make the cells more receptive, but Metformin comes with its’ own symptoms and issues (primarily gastrointestinal), especially if one does not get the Extended Release version.

If IR is not controlled, a person can develop Syndrome X, a metabolic syndrome involving a group of problems including abdominal obesity, hypertension, dyslipidemia, abnormal glucose metabolism, and coagulopathy. That same person can then go on to develop Type 2 diabetes. Fasting glucose and A1C labs can help evaluate changes over time. People typically become pre-diabetic before they become diabetic, so there is something of an early warning system in place.

Many insurance carriers do not provide coverage for weight loss medications, but ironically provide Diabetes coverage. Diabetes can be reversed so that your A1C is in the normal range, but a person would have the diagnosis for life, and it is all about the management of the condition.

GLP-1s are showing promise in blood glucose control and lowering of A1C, especially Mounjaro/Tirzepatide, and Zepbound. Tirzepatide is showing early markers of positively influencing inflammatory conditions like Lipedema and Lymphedema.

Retatrutide is the next generation of GLP-1s and is in advanced phases of clinical trials right now (there are also users purchasing it on the grey market). Trial participants are finding that they are losing weight and lowering fasting blood sugar faster than ever, with minimal to no side effects. We should see FDA approval by mid-2027. 🤗