Beginning of endocrine system failure?

[RedsLIFE]

Hello!

Im a 23 year old male with exocrine pancreatic insuffiency, type 1 diabetes, hypothyroidism (possible hashimotos), and now am diagnosed with addisons disease, im no longer producing testosterone and my pituitary is not working as well.. My doctors are worried I may have polyglandular autoimmune disease which in my case could be a death sentence. I've lived through to many instances where I've been on deaths doorstep but im still here.. Has anyone been diagnosed with this and what are you doing to get better? My team isn't going into to much detail because they don't want to scare me but to be honest its just making me more worried.

Im a realist and very straight forward and to the point. So if this seems like a lot I apologize. Im just a young guy fighting to get through this life and need some help and support right now.

[humanbean]

Sorry, I can't really answer your questions, but there isn't a huge amount of activity on the forum after midnight in the UK. Hopefully someone may be able to help in the morning.

[Batty1]

rarediseases.org/rare-disea...

Pretty interesting read

[Hedgeree]

Hi RedsLIFE,

You have got a lot of health conditions to deal with; you must feel completely overwhelmed!

As humanbean says the forum isn't very active over night in the UK so hopefully now you'll soon get replies. It would be helpful if you put your location on your info.

From reading the forum posts I believe there are just a few members with Addison's and at least one with polyglandular autoimmune syndrome though can't remember off hand which type.

To start off if you have any thyroid test results and their ranges it would be helpful if you post them and at least members can advise you on those. The knowledge and experience on the forum is fantastic and members will do their very best to help you.

Best wishes.

[shaws Administrator]

First of all - I am sorry you have a polyglandurar condition.

I also have been diagnosed with Polyglandular Autoimmune Disease No.3. These are Alopecia - Hypothyroidism - vitiligo - pernicious anaemia.

I am fortunate to have replacement T3 that resolved most of my clinical symptoms.

I also have a B12 injections monthly instead of 3 monthly for P.A..

I feel well and am symptom-free at present.

For the other condition - Alopecia - there's no treatment.

I hope you are able to relieve your symptoms .

[marvalrus]

Try a board called Inspire dot com. There boards for your conditions. There's not lots of activity but it's monitored and people will get back to you. There are replacement steroids and hormones for all those things you lack. You need a good doctor to help balance them. Perhaps you should seek several types of doctors, gastro, even NP. Endos might be OK w/ diabetes but they're not so great w/thyroid and maybe not the cortisol replacement. I can tell you this, if you are using HC replacement, I advise you to use the brand name Cortef instead of generic. Many in the Addison's group on Inspire will test to that. Also endos aren't great w/thyroid replacement either, and this can make you feel really bad. They like to look at your TSH only. It's easy to get your TSH in range because the range is so wide, but it takes a caring doc to evaluate the whole panel. So sorry to hear you have all this at such a young age. Hugs to you.