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.
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.