Had an ACTH test yesterday at local hospital , the test was 6 months overdue......lovely nurses....while there, same dept as infusion for bones ....checked why I hadn't been sent for that either!....receptionist apologised and said it's madness here!....have appointment end of this month......also had GP appointment today......because of escalating symptoms......pharmacist who I spoke to last week said my symptoms could be underactive thyroid or B12 defiency........GP had results of ACTH test....results 290..... she said your adrenal glands aren't working and probably never will. She said we will have to see what Dr Max Yates advises and Endocrinology....she showed me my blood test results taken last June....Thyroid/B12..all ok, above border line.....am having more bloods taken in a week or so.....my sister says I'm a mystery....I'm beginning to think she's right!.....
Interesting two days!....: Had an ACTH test... - PMRGCAuk
Interesting two days!....
Hi Longtimer,
Would you be kind enough to tell me any symptoms you personally experienced, that indicated towards this diagnosis.
Yes of course. Severe fatigue, dizzy spells, blurred vision....balance is bad, using stick sometimes and grabb ing walls as I slowly walk. My legs are very wobbly and weak and almost let me down. Some mornings I wake up with a tremor Hardest part, haven't driven for nearly a year, lost my independence!......hope I haven't rambled on! Perhaps others are struggling also with these dreadful symptoms....
Thanks Longtimer. Much appreciated, and you definitely weren't rambling on.I'm experiencing severe fatigue, but none of other symptoms.
maybe anaemia?
Hopefully blood tests will show up what it is, just walking down hospital corridors my legs don’t feel like they belong to me….so weak. Could use a wheelchair but want to use the muscles if possible. Thank you
Meant to ask….how are you now?
Having finished with no GCA symptoms, I was found to have LVV (large vessel vasculitis - in all my arteries). Tapered steroids for 18months, supplemented by methotrexate. Been in remission since 2020. Recently found to be anaemic, hence feeling tired all the time.
I had a bad time with this, too, & my symptoms were very similar to yours! I had more falls than usual, too…but also felt really ill, like I had the flu or a virus, & suffered nausea quite often. I have Essential Tremor, though, so my tremor is with me for life! But my symptoms did improve when I went back to 5mg! It was the 2nd time I’d tried to taper slowly from 5mg, each time I hit trouble!!
Ditto your symptoms!.....not sure if the tremor is essential or because of adrenals....if you feel better as they say.....keep taking the pills!!
My tremor came along before PMR came calling, so not connected! It was diagnosed by a Neurologist, as they need to rule out nasty things like Parkinson’s! It’s violent & stops me from carrying food, or drink…and peas and sweetcorn are very difficult veg!! We’ve had food up the walls, drinks on every floor, & I wake up smashing myself in the nose some mornings…not the happiest way to awake! S x
Sounds dreadful, mine isn’t that bad…I have a friend with MS who thinks I have the symptoms, but so many symptoms can be so many different illnesses, it’s a minefield.
Possibly. I went through five consultants and had all the tests, neurology, bladder & kidneys, rheumy, one who tested balance & suchlike….result was that I most probably have MS…but they weren’t willing to do the test for it, as I was paralysed by a spinal block six months previously. In the end I told them I didn’t want to pursue a diagnosis, it would only be yet another ‘handle’ to add to the 12 I have, & the travel insurance would be appalling! There’s not a lot they can do for MS, really, & I’d rather stagger on…doing what I can. It causes issues…bad fall four weeks ago & I dislocated my knee & have spent last four weeks on crutches…& just told today I must have complete rest, no exercises, on crutches to get about, & go back to the surgery in two weeks time!
Gosh that’s awful, and so much to go through to get answers, don’t blame you for putting a halt on things. Hope things improve for you. Keep us posted.
Maybe someone will let you have a bit more pred so you feel human ...
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