Quick one ,
Due to extremely low cortisol I was diagnosed with Addisons 5 years ago and I was put on meds , after 6 month and a retest I was told I didn’t have it no more , I suffer tremors and palpitations and other symptoms that fit this condition, I have had a test a couple years back and it came back negative, I’m confused as I thought that if you was diagnosed with it you had it for life , has anyone had this situation .
Thanks .
Most people on this forum don’t have Addison as such, but because they are on steroids for their illnesses for number of years their adrenals go to sleep temporarily -so may have secondary adrenal insufficiency.
A temporary cause of secondary adrenal insufficiency occurs when people who take corticosteroids (for example, prednisone) to treat chronic conditions, such as asthma or arthritis, stop taking the corticosteroids all at once rather than tapering off.
Not sure how you can be told you have Addisons a few years ago -and now the opposite. It cannot be cured but it is treated by a form of steroids.
What medication are you on now -and what was results of previous tests-maybe request another on. Bit more background might help..
Hi and thanks for the reply, I was on hydrocortisone for 6 month , and asked to stop taking it for a few days to get a retest after the 6 month period , the result came back normal , I can’t remember the figures , I have not taken anything for this since , a weird thing is I always seem to feel at my worst between 11am and 1pm most days and that’s when I feel most symptoms, I am aware that cortisol peaks and drops certain times of the day but unsure if this is anything to do with things , I’m due at my gps next week and will bring this issue up again and ask for a test , it seems to me someone messed up with my original results for me to now not have it , but I seem to fit with all the usual symptoms, last year I had a seizure , they ruled out epilepsy, and focused on cardiac syncope to which after various tests nothing has been found wrong with the heart but I do have atrial fibrillation which was diagnosed a year after the one for Addisons and I get the associated palpitations with it all the time but is it that I wonder ? , sorry for waffling on but it’s all confusing and the doctors seem clueless..
We have members on here with AF, and I’m sure PMRpro will be along and give her valuable advice on that as well your cortisol issues. Did find this graph [which may have seen already] which does indicate a small change in levels around the times you mention.
But you do need to discuss with GP for sure.
Is your a/fib not well managed? If you are having palpitations "all the time" it doesn't sound like it.
What tests have they done? Some aspects of a/fib will only be taken seriously if you are on a cardiac monitor when they happen so they see them. I had had waves of dizziness/faintness over months but never while on a monitor, Then I collapsed and hit my head on a radiator and was taken to hospital. I was agitated and before my husband arrived they gave me a diazepam infusion - wasn't on my notes I react to it! And then they found the cause of the dizzy spells - tachycardia followed by bradycardia when my heart beat so slowly briefly that the blood supply to the brain was reduced enough to make me faint. I said to them - I TOLD you so!! "But we hadn't seen it!"
Addisons disease is considered irreversible and requires the use of corticosteroids for life. If you had it and now don’t sounds like a miracle. The doctors must have known it was a misdiagnosis and it was very wrong of them to say you were cured.
Does happen though!!
"Addison's disease is generally deemed to lead to irreversible cell-mediated immune destruction of the adrenal glands. For this reason, patients receive detailed counselling and education on the need for lifelong replacement therapy. To our knowledge, this is the third reported case of spontaneous recovery of the adrenal axis in Addison's disease. Recovery may therefore be more common than previously appreciated, which may have major implications for the treatment and monitoring of this condition, and for the education given to patients at diagnosis."
A thread or sub-group for all long-term PMRers
Can I have some advice please
PMR or Fibromyalgia 
Did you all think I had deserted you?
