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Hi Carl,

Having just seen a new endo for a second opinion I am now even more confused as to whats going on . There is some good news to report though - he was very informative and willing to answer all my questions and explain the complexities of hormone replacement. Having had low FSH and LH I have already been on HRT for many years, and the endo has decided this is caused by menopause and not pituitary failure. And as I have taken thyroxine/Armour Thyroid for primary hypothyroidism since 1995 he thinks that my virtually undetectable TSH is unconnected to pituitary function too. My IGF level is normal. The endo therefore thinks that the ACTH deficiency causing adrenal insufficiency has occurred in isolation but may not be caused by the pituitary adenoma. He thinks at only 4mm diameter the tumour is propbably too small to affect pituitary function. However, I have all the symptoms of hypopituitarism! And when I completed the growth hormone deficiency QOL questionnaire on here (after discussion with Alison before I saw the endo) I scored 21/25. So I don't know whats going on.

Again though, on the upside, when I asked why I am having so many adrenal crashes he suggested I am possibly not doubling my hydrocortisone dose quickly enough when I become unwell. Having thought about that I do tend to wait until I have seen my GP and been prescribed antibiotics to double my dose so maybe if I act quicker in future I may stop infections taking such a toll on me. The weight gain I'm still getting he thinks is caused by slight over-replacement of hydrocortisone. I did tell him I had literally been a stick insect prior to starting on hydrocortisone, underweight my entire life, even when I had untreated and very severe hypothyroidism! I had TB as a child and ever since then I had stayed thin - the specialist I saw even told me when I was finally discharged that he was sure I'd never gain weight! So, here I am with 2 endos saying I don't have hypopit and one who thinks I do!

To say I'm confused is an understatement. I even forgot to ask the new endo before I left if I could be transfererred to his NHS patient list (I had paid to see him privately for the second opinion). Don't know what else to say? Can anyone help? Best wishes,

Debra.

Gosh, don't know what to say, very confusing. Certainly I think taking HC as soon as you can is recommended, but having conflicting advice from the Endo's is awkward. Can you summarise all 3 bits of advice to at least be able to go back to the best Endo (or Alison) and try to get an agreed position to move on from?

Hi Carl and Pat and everyone,

Just wondering if anyone else has had a bad time in hospital. I recently suffered a stroke (left thalamic infarct) which has been causing repeated totally unpredictable adrenal crises. The area of the brain which has been damaged is exactly where hormone levels are governed - including of course adrenal ones. I also now have a highly resistent UTI (now pyelonephritis)hospital bug contracted during my previous admission for a resistent sinus infection. The horrid uti bug can't be treated by IV as the med to to treat it only comes in tablet form and so I am currently very I'll and trying my best not to vomit.

Thankfully I am home but I am needing emergency Hydrocort injection daily though, which is extremely stressful and upsetting for my partner - who has to administer them. This is despite me being on triple normal hydrocortisone dose to counter the stress of the kidney infection and stroke effects. Whilst in hospital I am denied regular IV cortisone and fluids despite my pleas so I have to crash ( usually 2-3 times daily) then spend ten minutes trying to get a nurse then get an IM injection of hydrocortisone. To say this is purgatory is the understatement of the century.

During my last admission after the stroke an SHO in endo department said quote "we only give IV cortisol maintenance when the patient is in ICU" in other words full crisis and in that place you'd be lucky to survive. I think this is totally unacceptable and have contacted my MP for help. Two ambulance personnel have also told me that if I don't get regular IV cortisone I will never get stabilised and will keep crashing when I am discharged and get home, which I do.

The stroke has affected me quite badly on my right side and my writing is very bad, my speech is slurred and I come out with the wrong words . and my ability to process thoughts is significantly impaired but that is but NOTHING compared to the adrenal problem - the under treatment of which either caused or significantly contributed to my stroke. As I do not smoke, don'tdrink, am as active as I can be with 3 other autoimmune diseases and am not overweight the blame had been put on HRT (not for menopause but low female hormones caused by pit microadenoma). Since HRT was stopped and that is a steroid I am now not on enough Hydrocort to cope. Couldn't an endo have realised and corrected that ? Sadly no. Has anyone else suffered like this whilst in hospital for crisis precipitating infections or a stroke and not got IV cortisone to stabilise them? Best wishes,

Debra.

Oh Debra, what a nightmare, I'm so sorry to hear the problems you have been having. I can't even imagine what you are going through. The only Adrenal crisis I had was treated in the QA Hospital in Portsmouth and I had IV Hydrocortisone for several days and I wasn't in ICU, just a normal (endocrine) ward. I had several IV lines in over a few days for antibiotics & saline.

I really hope you start to get past all this soon, you need some time to heal.

I don't really believe in that kind of thing, but I'd say a prayer for you if it helps! Certainly have a hug from me.

Carl

Sorry Debra, posted a long and detailed reply which came up with an error message when I tried to send it. Try to keep positive in spite of the awful problems.

Hi, thanks for your message. sorry I didn't reply sooner but I'm struggling to treat the resistant UTI I have. And of course the stroke means it takes ages to type. I keep doing emails that suddenly disappear too but on my ipad. its infuriating. Hope you're making some progress with your treatment. Best wishes,

Debra.