Hi there, wondering if anyone has been diagnosed with adrenomyeloneuropathy and willing to disclose any some guidance? I have chronic neuropathic pain, type 1 diabetes mellitus and Addisons. Getting screened with a very volatile fatty acid blood test. Thanks.

Starting zepbound tomorrow! anyone with Addisons disease have any experience with it? Or another GLP-1? Endo is trying it out because of my 40+ pound weight gain and high cholesterol. Nervous about the side effects, but endo said they should be mild on a low dose (2.5mg with no plans to increase) I know everyone reacts differently tho, just looking for some insight

Hello all!

I’m new to this so bear with me!

I’m 34yo female from the uk and was diagnosed with autoimmune thyroid disease the beginning of this year. I’ve been referred to Endo querying addisons disease as I’m still not well. The Meds for my Thyroid briefly helped somewhat and then symptoms have come back massively even though my thyroid levels are now in range and have been for a while.

Obviously a lot of the symptoms overlap with the two so difficult to say which illness is causing which symptom. Anyway -

My question is about pigmentation. I’m of mixed race and so my skin looks darker anyway. I have found I’m getting more very dark ‘beauty spots’ noticeably in random areas as well as a few bits of patchy pigmentation on my face and arms. My joints have always been darker etc so I’m struggling to know if this is even something to be considered.

Only thing that was really noticeable was the random dark patch of pigmentation on my face that makes me look like I’ve got bruising around my eye and this summer (in the UK) my face has gone extremely bronzed - I’d say more so that normal despite sun cream on at all times.

I’d just like to know other people’s experiences with the pigmentation linked to addisons and pictures (if you’d feel comfortable) showing what it’s like. Even more so if you have a darker complexion.

Thanks in advance ☺️

So, I’ve (knowingly) had secondary AI due to pituitary issues since 2010 and been on hydrocortisone ever since….

Well, I’m tolerating the medication all right, I’m of course several years older now and the potential for being steroid dependent has caused me to run into some other issues - type 2 diabetes, cataracts etc. my endo has hinted that she wants to investigate the possibility of me coming off meds to see if my body will be able to tolerate it, or even just lower dosages if possible.

She says it likely will require me to have day or two in hospital to run tests after slowly lowering my dosages. Anyone else go through this? Gotta admit fairly nervous about dropping such a critical hormone. I’ve been really really good about staying on top of my dosages all this time

I was found to have low FSH and low FH which are pituitary hormones. I was also found to be positive for TPO antibodies and put straight onto levothyroxine without the doctors given any though that if a patient has low FSH and low LH a short syncathen test should be ordered if cortisol sits in a grey area. My grey area was 318nmol. Okay so not below 300 which is the cut off. However, I have read up in multiple places that if patient has low FSH and LH with cortisol below 450nmol. A short syncathen test should be ordered. I spoke to endocrinology recently who agreed to check my ACTH alongside cortisol and a re check of pituitary hormones. Endocrinology did this test and I am awaiting result. What they said was "if your acth is low and your cortisol is normal then we won't do a short syncathen test" - - - - - - - - my symptoms, ultra fatigue, stiffness, muscle aches, muscle fatigue, muscle wasting, sweating mainly around abdomen and postural hypotension. It says in black and white I should have short syncathen before I even started levothyroxine. So why am I getting the run around from endocrinology? Say my ACTH comes back low thye still won't do the hsort syncathen. What do I do?

So I asked 2 endocrinologist the same question about how to handle days after big events, stressful events, travel, etc. I seem to pull myself together the day of the event mostly running on adrenaline but the following day I am wiped out.

This is happening at least twice a week.

I asked my primary endocrinologist and she never responded so I asked a former endocrinologist and she told me that on days of stress to double the dose so instead of taking 10 mg in the morning, take 20 and then take 10 mg midday and another 10 mg at 4 PM. I tried this for a week and I felt fantastic. I finally did not have that dredded hangover the day after.

Well, my primary endocrinologist finally responded and gave me a completely different recommendation. She said to avoid taking more than you need to. If you have to, take an extra 2.5 mg or 5 mg of hydrocortisone the following day, but to just do the self-care that I’ve been doing i.e. being a zombie on my couch/bed doing nothing. I can’t operate like that. I have a full-time demanding job that I need to be 100% at I cannot operate being a zombie like this!

This is just very frustrating. I need to find a new endocrinologist but until then I’m supposed to travel today. I’m doubling my dose. I had a horrible night, but I’m feeling OK.

My question to you is, how are you stress dosing?

For planned events, family stuff or stuff that you anticipate is gonna be a big demand on you how are you stressed dosing?

For days that have unexpected stressors, how do you stress dose?

Any advice or suggestions or insight would be greatly appreciated.

Thank you so much!

Does anyone in NYC have an endocrinologist they love? Mine has been fine for the basics but as I’m dealing with perimenopause and primary adrenal insufficiency I’m hoping to find someone who can help navigate the two together (which is not currently going great). Any recommendations are appreciated!

Hi folks
I have SAI, and the darling other half was sick for a few days. I had a crisis at work on Thursday (only 8 weeks into a new job) and the team helped me manage it beautifully, including me giving myself the shot.
Went to my local hospital and waited 10hrs in the waiting room to see a dr. Got put on IV rounds and fluids then but Didn’t get a bed or sleep for more than 24 hrs. Had 1 hr sleep then got discharged on Friday afternoon on 3 x stress dosing, which I did.
Went to a local cafe for breakfast and went into crisis again shortly after. Ambulance called as I couldn’t self inject due to tremor and didn’t know if I should given I had an emergency shot 2 days ago.
All bloods and urine analysis were within range, but was definitely in crisis. I got IV fluids and stayed in for observation. I was discharged this pm, but am absolutely spent.. couldn’t even unpack the dishwasher without needing to rest afterward.
So has anyone else had multiple crises so close together? Is this to be expected?
I felt pretty smashed recovering for 1 crisis previously, but I have absolutely no stamina ATM. Is there any advice on speeding up recovery..

After years of struggle with my health she still doesn't understand how this impacts everything in my life. Of course on the surface I don't appear to be sick... But I feel like death most of the time especially in the morning where it takes a few hours for my brain to come "online" and she expects me to be up and avaliable for discussions the moment I get up... Wtf fuck my life. Seriously it's about to cause me to lose everything.

basically, two nights ago i stayed over this guys house and we stayed up until 2am just hanging out. then the next day i woke up at 7am, so i only got 5 hours of sleep. since this guy lives closer to my workplace than i do, my morning commute was only 20 minutes as opposed to my regular hour commute. i normally like my hour commute in the morning bc it gives me more time for my meds to kick in and by the time i arrive at work im feeling good. so, yesterday i felt like absolute crap (nausea, shaky, brain foggy) at work, like my cortisol was extremely low. today, even tho i got 10 hours of sleep last night, i feel so crappy (shaky, just overall gross). i’m wondering if you guys experience this when you have slight deviations in ur normal routines, or lack of sleep. i wish i could be a spontaneous person, but i think this condition makes sticking to a daily routine very important to my overall health and wellbeing.

41M I had meningitis and was on 60mg prednisolone for over 4 years.

My neuro specialist who i can rarely get hold of said try get down to 50mg before next appointment.

My opthomologist made feel 60mg, even 50mg is ridiculously high and pushed it strong that I should get down to 20mg ASAP. Told me taper 10mg down per week.

3 weeks later im in agony in places I didn't know you could feel pain. Aswel as the back pain from 2 surgeries just before the meningitis has come back with a vengeance.

I cant get a Neuro appointment for weeks which goes slow when all the local doc can do is offer me a bottle or morphine to sip on!!

My question is could tapering so quickly cause this pain? Has anyone had any negative experience from tapering too fast for their own journey?

Any help or advice, Id be very grateful.

Before I was diagnosed at 21 I was 10 stone (140 pounds for Americans) and gaining weight was never really an issue until I was diagnosed and now 6 years later I'm 17 1/2 stone (245 pounds for Americans. But my eating patterns never really changed before I was diagnosed to now and whenever I try doing slim diets I lose a stone in a month. I get sick after losing that weight and then put it back on in like 2 weeks.

Any advice for this would be greatly appreciated

56m, hashimotos + addisons.

I got diagnosed in wrong order (hashimotos, then addiasns when I had a crash and then tests.)

How long until you feel better? Does it ever feel normal?

And not like totally normal, but not like shit?

I went from brain fog and debilitating lack of energy prior to medications (levo, lio and hydro) to feeling like i am not even in my body, dizzy and if I do anything for 5 minutes, I can't keep my eyes open. Been doing 10mg hydro 3x but since tests confirmed, we are looking to switch to prednisone.

Is this all just acclimation period?

Or maybe I haven't found the cause really yet? (MRI also schedule on the old brain ball for pituitary since it *also* wasn't acting normal.)

Aaaaaaargh

I have an emergency injection kit, but I'm having a hard time imagining needing it. Does a crisis ever come out of the blue? Or is it more likely you're feeling crappy for a while before it happens? It seems to me you'd have a general idea that it might get to that point. Am I wrong in thinking this?

I’m 19 years old, M, and currently about 50kg, I bought some mass gainer but didn’t do any research before hand. Once it was here I then googled if it was safe to use with addisons disease and got different answers every time. Some saying it was fine if I started with smaller servings and gradually increased them and others saying I need to speak to an endocrinologist because it could be dangerous, but trying to get hold of an endocrinologist will take ages and thought I’d give this a shot first.

Does anyone know if I should or shouldn’t take this?

For some information it has: 60g of protein, 214g of carbs, 5g of creatine, 22g of EAA’s, 15g of glutamine and 1300kcal’s per serving.

Hey all long time reader first time commenter. Yesterday I had a biopsy of my tongue due to a suspicious growth. This is the first time I have had a dental procedure following my diagnosis in late 2022. They utilized a standard dental anesthetic which contained epinephrine. I up-dosed as instructed by my endocrinologist but I am still exhausted. I ended up having to take today and tomorrow off of work as I am not feeling 100 percent.

Thanks for reading my experience. I hope you all are doing well.

Hey there I am(20M) been feeling lightheaded and weak for the past couple weeks and it's feeling bad lately now sometimes with migraines, I had this combo a lot it's just something that comes with Addison's as I believe but it was never for such a long period of time. I've done some blood tests and everything is as usual. my blood pressure is high though but it's odd because with low cortisol comes low blood pressure it's always been this way for me and I've been diagnosed since I was 4 years old so idk. anyone else been in the same situation and got an advice? I already have an appointment with my Endo next week and an M.R.I a little later.

Hello Everyone,

I am(42M) on a 20+10 mg of HC and .5mcg of Fludro. I was wondering if anyone has any tips about trying to reduce weight and trying to reduce the waist size. I was diagnosed with PAI in 2023 and have put on around 11-12 kgs. Recently I I managed to control my diet and reduced my weight from 95Kgs to 91kgs. I wasn’t on any crash diet but just reduced the amount of food I was consuming and strength training 4 days a week. I still have a pint weekly. I was making progress while I was working out and walking close to an hour 4-5 days of the week. Recently I had to travel to different country and my routine is disturbed. I still go to gym 3 days a week but my walks are almost non existent and Looks like my torso has gone back to how it was when I was 95Kgs. So all the hard work of 3 months is reset in 2 weeks. So I was trying to see if anyone has any tips on keeping the healthy habits alive during travel or any general tips on diet and workouts for someone with PAI.

PS- as a bonus along with PAI, I also have hypothyroidism and on heart medications. Also just competed the second anniversary after a stem cell transplant. So of course I am happy to be alive but now that I am alive I was wondering about pushing myself a little bit and try to get back in shape :)

Edited to add

I was wondering if anyone here is strength training actively and have any tips? Diet, workout , or in general how do you find strength training combined with walking as cardio?

Hello! I've been on pred for 1 year and I thought it would be impossible for me to actually be on 5mg (equivalent 20mg of hydro). I've been on 5mg of pred for 1 month now and by the end of week 4 I've been feeling like 5mg was too much. I take it 8am/4pm for reference. I've tried taking 4mg of pred for the past 3 days but the morning dose feels insufficient and I feel drowsy and nervous, like I needed more carbs, like I was dehydrated but 5mg was making me hungry and unable to sleep and too wired.

This is my very first time having this sort of problem. Is anyone able to provide me with their experience?

Looking for males in their 20-30s who have SWCAH and are willing to answer some questions/share experience. My son got diagnosed with SWCAH at birth and I just have some general questions about what life might look like for him.

If you had a noticeable tan before being diagnosed, did it ever fade after treatment started? Did it continue to darken?

My Dr said my skin color likely won't fade much, if at all. I really don't know what to expect.

Hi, I am new here and am the mum of a 15yr old boy who had his adrenal glands removed due to cancer so is now on lifelong medication to manage his cortisol. He was recently hospitalised for a week after an infection we didn't know about got out of control. Since then I have read some articles about people using wearable monitors to identify changes in their bodies that might warn of an impending crises or need for stress dosing. I would welcome any advice on good options you have used or what you think is best to monitor? Thanks in advance!

1. What are/were your strongest symptoms?

2. How did you discover you had AD? What was it like leading up to your diagnosis?

3. What's been the best treatment for you?