PaulineS you are correct, when taking hydrocortisone the usual amount prescribed is 10mcg in the morning to get you "going" especially if you are like me or Angela 2121 virtually flat-lining. Lunch time 5mcg and around 5pm 5mcg. I became so ill I made an appointment to see a GP - after weeks and weeks of the dreaded blood tests "all within normal range" and the only thing offered was anti-depressants (yes another Dr inferring it is all in the mind) I decided to see a doctor privately who had a special interest in Addison's Disease. .
It was suggested I have a saliva test done. When the results of my cortisol levels came back I was told by my private doctor that because I had clearly been very very ill forsuch a long time and with the results of the cortisol test showing why, that I had Addison's Disease and that I must not waste any time in getting the right medication as the consequences were life threatening. I was given information where I could obtain either Hydrocortisone or Prednisolon as I knew there was no chance that I would ever get a prescription for the correct steroids.
I bought Prednisolon which unlike hydrocortisone has a half life, I took 5mg morning 2.5 lunch time and 2.5 at 5:00 pm. I had a miracle recovery, (I did put on some weight).
By a fluke a second GP discovered I was taking steroids that were not prescribed by them. I expected to be duly berated but was asked how I was and when informed about my recovery I was told that they would have no problem is prescribing Hydrocortisone BUT I must first see an Endocrinologist.
Big Big mistake, as I can honestly say this was one of the most harrowing experiences I have every had - I sobbed all the way through the appointment. He was furious when I handed him my private saliva test results, saying "this is not the first time I have seen results from this company, and that British Endocrinology does not accept Saliva Tests - who told you to do this". I was crying so hard he got up and handed me a paper towel. Quite clearly we women (as it is mainly women who suffer terrible hormonal problems) have no right to try and make themselves well, and have no right to any opinion, or obtain information about their condition. This man was devoid of any thought for a patient's needs or feelings. He also said I only need to take one tablet a day, (I later found out he specialised in Diabetes. I was told that I should come off the steroids straight away and have the Synacthen Test done. I told him no as a Synacthen Test can cause an anaphylactic shock, and I tried to explain that I have terrible reactions to almost every procedure I have undergone. He also inferred that everything could all be in my mind.
While attending this appointment they took more bloods even though he was told I was taking Prednisolon, and 100mcg Thyroxine (after prescribing for l4 years my GPs withrew this medication) so I had to purchase that as well. I was also injecting B12.
Five months after my appointment with him, he wrote to my GP stating I did not have Addison's Disease, nor was I Hypothryroid and that I shouldn't be taking B12 injections, even though I had explained in the 70s I had undergone a vagotomy and a jedjunostomy (he didn't know what it was) I had to explain to him that it was probably the lack of intrinsic factor that I needed it, but in any case it was a water soluble vitamin.
Since then I have had to carefully wean myself off Prednisolon as I can no longer find a trustworthy on-line pharmacy that sells it without a prescription, and yes I am back to square one and am so frightened and very very ill.
The power that Endocrinologists have is terrifying as since his letter to my GP all communications from them have been ignored. Talk about "Do No Harm!"