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Autoimmune disease

Possible Adrenal issues/something else..any ideas?

13 replies

tangledyarn · 07/02/2018 22:12

I'm currently being investigated for possible Addisons/AI although gp quite vague. Have a long history of health issues. Diagnosed with ME, chronic migraine, hashimotos.
Last 3 9am cortisol bloods were low so am having some further bloods tomorrow AM. Haven't got actual results so no idea how low. Currently im feeling really awful, over last 2 weeks I feel like im steadily feeling more unwell, fainting, feeling faint all the time, really weak. I feel horrendously nauseous although not actually been sick and have this awful quite intense buzzing feeling like an internal tremor constantly. I'm just wondering if these things sound familiar and if not related to cortisol what they could be..it all feels quite hard to describe which isn't helpful..sorry. I've learnt to cope quite well with a lot of health problems but this is feeling unmanageable.

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TenancyTroublesAgain · 08/02/2018 09:11

Could be the low cortisol and/or something else, lots of conditions have the same symptoms. Is your thyroid being treated sufficiently? Ask for copies of your results.

Have they tested you for anything else?

I'm surprised you've had 3 tests which were all low and they still want to test again? I'm no doctor though... Hopefully they can diagnose you soon and you can start to feel better. :)

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tangledyarn · 08/02/2018 16:32

No idea why so many tests..im guessing they were a bit low rather than drastically low. TSH is good (around 1.5) I've been for some more bloods today including acth so will see what comes back I guess. Thanks :)

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Slightlyperturbedowlagain · 08/02/2018 16:35

They will be testing different bits of the interlinking hormone systems to work out what bit is possibly malfunctioning. There’s usually quite a clear pathway they follow, testing the most likely (and easiest to test) bits first. Hope you get some answers soon Flowers

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SluttyButty · 09/02/2018 11:28

You’ve described how I feel when my thyroid slips into overactive and I need my meds reducing for a while.

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tangledyarn · 09/02/2018 14:47

Thanks it does feel a bit like having over treated thyroid but not quite the same. They are rechecking it though. Have seen GP today..tests are inconclusive..cortisol is low but not worryingly low, acth was 48 which I think is top of normal. Am going to be sent an appointment for a short syncathen test so will see what that reveals and am hoping I feel a bit better in the meantime, covered in hives today which is a new and unwelcome development ;)

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SluttyButty · 09/02/2018 18:40

Oh I get hives all up my arms, the kind of urticaria that you can write your name with, can’t remember the name of it. I do have numerous autoimmune diseases though as well as Hashimotos.

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Surfingwhippet · 10/02/2018 03:11

I used to get the internal tremor, i thought it was just me. Not many people to compare with. Are you craving salty things? That would be an indication your sodium levels are low

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tangledyarn · 10/02/2018 05:40

Its really good to know its not just me..its a very strange symptom..sometimes its quite mild but other times its waves of it for hours and hours. I feel like im going a bit mad to be honest. Hard to say about salty things as ive always been a bit salt mad although I think they checked electrolytes this week and didn't mention anything so im guessing that was fine.

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SluttyButty · 10/02/2018 19:18

My electrolytes have been out many times. High potassium and low sodium, crave salty things in peaks and troughs. No one is interested in the cause for me though. Worthwhile asking for your electrolyte results historically.

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tangledyarn · 10/02/2018 22:19

Thanks..yeah am v used to being fobbed off so am hesitant about asking too many questions/asking for results etc. Its awful to feel really ill all the time and feel that nobody is interested in getting to the bottom of it.

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tangledyarn · 09/03/2018 17:31

I've now got an appointment for a short syncathen test next week and an endocrine appointment the following day.
Im currently feeling really terrible..its like my body cant handle any kind of stress emotional or physical..trying to do anything eg half a day at work leaves me feeling horrendously exhausted..struggling to get up the stairs etc but with this really intense full body buzzing sensation and this awful wired but tired feeling so i cant sleep etc.
However, i don't think they'll find anything significant adrenal wise as other bloods are ok and cortisol is only a bit low so I suspect its 'adrenal fatigue' which I know isn't really recognised by the nhs or something else entirely.
Im just wondering how people felt having the sst ..whether it left them feeling unwell or whether I can try to go to work after?
I'm also not sure whether I should skip morning dose of my inhaled steroids (nasal spray and inhaler) Sorry for the ramble! :)

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MrsMaisel · 14/03/2018 20:18

Hope you get some answers from the synacthen test. Adrenal insufficiency is very real and if you have it then hydrocortisone will make all the difference to you. Adrenal 'fatigue' is a total sham condition made up by people peddling bogus remedies. Don't buy it.

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MrsMaisel · 14/03/2018 20:19

Incidentally, I suppose you would have read by now that inhaled steroids can cause AI... vicious circle.

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