I have had chronic fatigue for many years, but have been able to work part time and have a life up until a bad cold/bronchitis which has left my life completely upside down…I sought clarification of what was wrong with me as most of the symptoms were unlike anything I’d ever experienced before. I was refererred to an endocrynologist as I had pointed out to my doctor that years ago I was told I had a borderline cortisol reading after taking a short synacthen test and perhaps this was getting worse…
Subsequently I was diagnosed last year with Addison’s Disease after having a short synacthen test (cortisol levels: before 280, after 420) - I was prescribed Hydrocortisone (15+5+5), Fludracortisone and Testosterone, which I refused to take as the consultant did not think it necessary to see me again for a routine follow up and my own GP refused to advise me on the ongoing management of the disease, as he felt it was too specialised… and so I was forced to email the consultant - her answers were tagged onto my questions which I have enclosed below (in blue). My confidence was undermined by the fact that she would not see me again, as my common sense was telling me surely one is not prescribed steroids for the rest of one’s life and not have access to or “be under” a consultant, especially a condition as serious as Addison’s.
As she told me I was still producing some hormone, I may be able to exist without having to take it all the time, and so therefore thought I could deny it and try and ignore the diagnosis.
My health improved slightly as I had stopped work and lived within the confines of my abilities until I tried to walk too far on holiday in spain in October last year and collapsed with slow pulse, palpitatons, nausea and chest pain - it was six months since I was diagnosed, had the steroid card and medication in my pocket at all times - the paramedics suggested I take the medication to regulate my metabolism. I still hung on to my theory that maybe the consultant’d got it wrong and didn’t take the medication.
One of my greatest fears was what if the consultant had got it wrong? And now I would possibly develop secondary addison’s from taking the steroids for a prolonged period and maybe I didn’t have it in the first place.
I immediately asked for a second opinion at St Bart’s in London, where several months later I was given an Insulin Stress Test, but was refused a Short Synacthen Test on the basis I didn’t have darkened skin and my
and my ACTH was not sky high - even though I just wanted a comparison to the first test I had had done confirming Addison’s - at least I could have peace of mind one way or the other… it was not be a straight forward comparison and I still feel I need to have the Synacthen test again just to reassure myself whether the first consultant was right or wrong.
The Insulin Stress Test came back negative and so was told I didn’t have Addison’s or Hypopituitarism.
I have spent the last 10 months on a knife edge of feeling faint, weak, and host of other symtoms which I won’t bore you with, but my health is at a lower level and feel I have no strength to do anything or feel awful afterwards.
My question is this; How can one National Health Hospital diagnose and treat a patient with steroids for the rest of their life without follow ups, (I’m assuming this goes on all the time), and another hospital can use a completely different test - and tell me the short synacthen test is the “poor man’s test” and that I don’t have Addison’s. I realise now there seems to be much controversy over these two tests.
I have never had my adrenals scanned for atrophy etc, and St Bart’s were determined to prove my Pituitary was in working order as my ACTH was normal, and as that was the case, there could be nothing wrong with my adrenal glands… Is there never a case or normal ACTH and malfunctioning adrenal glands?
Basically St Bart’s have excluded Addison’s and that’s that - although the Insulin Stress Test show’s that I’m insulin resistant but they do not think my symtoms would be attributed to this.
I am so confused and mistrustful of my experience with consultants regarding all of this, I don’t know who to believe and am desperate for some opinions independant of my situation but who understand this medical condition.
I really wish I’d taken the medication now just to see if it would have made a difference - maybe the first consultant was right - who knows? But without support I didn’t feel confident to do so. I haven’t worked properly for 2 years now and don’t know which way to turn.
Any advice would be greatly appreciated as to whether there could be further investigations made or questions to ask.
Thank you so much for your time and consideration.