An MRI in January showed I have a growth in my pituitary gland. The MRI was for my back and neck, the back surgeon did not inform my GP or me, I found out by accident after chasing for a copy 6 weeks later.
My diabetic doctor told me in December 2019 that I have a hormone problem and to see my GP.
My GP was not interested even though I have put in 10kg mostly around my stomach, rate for me, have headaches and def my moods are terrible. My GP is saying it is unrelated to the tumour.
I am having a telephone conversation with an endocrinologist next week. Can anyone advise me if my problem and what I should be asking?
Thanks in advance.
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Iona467
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I don't have knowledge in this area but I would suggest you ask them to do a blood test to measure your pituitary hormone levels.
Hi Iona, I'm sorry you have a pituitary tumour, firstly, pituitary tumours are nearly always benign & not cancerous. It's said that around 10% of people will have a tumour they know nothing about as it isn't causing any issues. Not all endocrinologists are conversant with pituitary issues as they are more used top dealing with diabetes or thyroid issues, but hopefully the one you are talking to will be. He needs to do a full pituitary panel (bloods) to see if the tumour is secreting excess of any of them. You mention that you have
put on weight mainly around your abdomen, this may point to Cushing's disease, where the pituitary gland produces too much ACTH which is the hormone that stimulates the adrenal glands to produce cortisol. Cortisol is used throughout the body but if too much is produced then it causes lots of symptoms, weight gain being one of them, mood swings can always be due to it. Other hormones which can cause problems are growth hormone which can cause acromegaly; prolactin which if too much is produced causes breast milk. I had a pituitary tumour which was found by chance, initially it wasn't secreting any excess hormones but several months later produced too much ACTH which caused Cushing's disease. The tumour was removed nearly 5 years a go. The Pituitary Foundation has a lot fo information on it's website, I also run a group on Facebook for people who may have Cushing's, it's called Cushing's UK. I hope you get some answers soon.
Thank you. I will look for your FB page too. I thought it was bushings. My GP has not helped me, I had stage 3/4 kidney cancer for 3 years plus, in spite of v serious kidney problems and emergencies into hospital, I was humiliated and told it was nothing. Too late to save my left kidney!
I was diagnosed with pituitary adenoma some time ago . MRI s yearly followed. Your
Gp could test hormone levels and maybe refer to Endo .
It’s a matter if big and if its causing pressure there .
Mostly benign so watch and wait if Endo feels appropriate. It may be so small as to be of no consequence.
Mine had shrunk to a micro adenoma last MRI .
Will not have any more MRI s
The hormones that the pituitary produce is the first thing to test I believe .
Good luck .
Mine didn’t produce inappropriate hormone .
In that case it’s if it tumour impinges on the ocular nerve causing loss of peripheral eyesight . It’s common for the optician to be the first to pick up the problem .
It tells you about every test an endocrinology department in a hospital is ever likely to do. It goes through the purpose of the test, how it is done, what preparation needs to be done by the patient, timing of the test, and interpretation of the results.
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
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