anybody diagnosed with hypopituarism: Hello I've... - Thyroid UK

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anybody diagnosed with hypopituarism

Peroxideblader profile image

Hello I've posted here before regarding my symptoms and blood tests pointing to secondary hypothyroidism or hypopituitarism...I've still got nowhere so I'm booking to see a private lady for thyroid and menopause...hopefully if I get to see her in January I'll still be as poorly as I am now so she'll see I'm struggling big time.

as hypopitituarism is more uncommon I wanted to know people who had an actual diagnosis and how it was confirmed and your symptoms..I want to go armed with as much info as I can as my consultation will be short and expensive..thanks

7 Replies

I have hypopituitism but due to removal of a pituitary adenoma. However it you look on the Pituitary Foundation website it will be able to tell you the signs & symptoms. It can either be a problem with your pituitary gland that isn't producing enough ACTH to stimulate the adrenal glands to produce cortisol. Or if could be a problem with your adrenal glands. if it is a pituitary issues then T3 & T4 needs to be tested rather than TSH.

thank you..I had private and nhs tests for t3 t4 tsh and t3 was below level t4 bottom range tsh very low all pointing to a pitituary problem with all 3 being low but my doctor of course says all is fine I've no thyroud issue hence going private.

I presume the only way to know if I've got a tumour on my pitituary causing this is by an mri or ct? thanks

It would be an MRI with contrast that would pick it up. Would your GP do an early morning cortisol blood test? Needs to be done between 8-9am.

no chance at all..I had to beg and plead for a full thyroid blood test..this is after 7 years of being ill...

I feel your frustration as I am battling along similar lines. I lost my TSH years ago and I spent years battling Endo who accused me of lying and faking my symptoms even though I nearly lasped into a myxoedema coma with negligible T3 and T4. Finally I took treatment into my own hands and went down the T3 route. In the last couple of years I started with fits and a neuro asked about head injuries. Finally I understood that my thyroid problems are pituitary based probably caused by a significant head injury 25 years ago and in the last couple of weeks my cortisol has suddenly dropped off the bottom of the scale. My Gp has just walked away and has just left me with a vague enquiry to Endos and a limited supply of steroids. How do these guys sleep at night, what has happened to patient care? Having spoken to the specialist nurse on Pituitary Foundation website I understand how very little knowledge there is about pituitary conditions. Her advice was to get yourself referred to one of their NHS pituitary centres of excellence. In my case that's Sheffield but I have to go through the local Endo first. It's all so slow and I am really struggling just to get by on a day to day basis. There is also a forum on the Pituitary Founation website which is useful.



I was diagnosed with hypopituitarism about 3 years ago. My periods stopped when I was about 32/33 and I had lots of tests but they couldn’t work out why?? Then when I was in my 40’s I was sent to a lipid consultant as my cholesterol was stupidly high with no good cholesterol. He took various blood tests and referred me to an endocrinologist who thought I had a pituitary tumour. I had a brain scan that came back negative. I was then given an insulin stress test! This showed my pituitary gland didn’t work properly and I had low growth hormone, low cortisol amongst other things, explaining why my periods stopped so early. They can not give me a reason for my pituitary gland not working properly but I have had a couple of serious head traumas??? I spent my late 30’s and 40’s hibernating! Low moods, sleeping a lot and generally depressed and anxious. I now take thyroxine and inject growth hormone daily I am also in HRT and should take steroids daily but don’t! I only take them when I feel I need them and my endocrinologist is happy for me to do this. It took me about 18 months and a change in my eating habits to start feeling better! I cut out sugar and refined carbs and feel this works really well with my diagnosis. I wish this had been picked up earlier as I now have osteopenia as a result of low oestrogen for years, however better late than never. Hope all this helps and good luck with everything! It’s a long slog but you will start to feel better once you get your medication and diet right

Peroxideblader profile image
Peroxideblader in reply to Km27

thank you for your reply. my periods are erratic miss months but that's the perimenopause and many symptoms of that are similar to hypo so my doctors are even less interested. my cholesterol is high too not from diet even the nurse queried it and I think the only way I'll get anywhere is privately which is sad. but I feel so poorly all the time and the gp fobsme off it's been 3 years now...thanks again though

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