Thank you so much for the reply. My vit D is 11,to low and I take D-cure 25.000 U.I a week...about those tests...they only did TSH and that was rather oké...This has been going on already for 4 years that I am in a lot of muscle and bone pain. (it has been 20 years ago that I had my period also) NOBODY can help me...Every day I have internal vibrations and I am gaining weight a lot. I have lots of infections also (and rashes) ear-elbow-eyes etc...I have difficulty watching tv and reading. Eyes are out of focus and dry. It drives me crazy, I would do ANYTHING to get better, that is why I joined here hoping someone has some advice...
Poor you, Sandee, I can imagine it is scary. I have a non-functioning macro adenoma. It’s a biggun but it doesn’t produce hormones. Generally the bigger ones tend not to and the smaller ones are more likely to. I’m guessing you had a very high prolactin result as I know they don’t like to medicate until the number is likely to be causing lots of symptoms.
The other choice, other than the drug, is surgery and you don’t want that unless you have no other options. I don’t know if they can do surgery on something they can’t see, mind, so maybe it isn’t one in your case.
They monitor the heart regularly on the medication. Have they assured you they will do this? I know because my prolactin was high at some point and they were wondering if the adenoma had started to produce it, but a) the level whilst significantly high was not high enough to medicate and they’re reluctant to do it unless you really need it, so we tested again and the further tests revealed it was a spike, in my case. But I did think I’d be put on the drug and would rather that than the symptoms personally.
It is also possible that the adenoma could mess with thyroid levels and they will have tested those, I’m almost certain. I had a gazillion tests when they found mine to check it was genuinely non-functioning. Perhaps you have the results?
I do remember how scary it is being told you have a lump on your pituitary, though and it must be scarier still finding out that it is making hormones. But they can medicate it. I don’t know if you are in the UK? If so, Sue Perkins had a prolactinoma and takes medication and is fully well these days.
Other posters here have them too - hopefully they will be along with more reassurance.
Ah, OK. Have you been able to get any reassurance from them in the side effects? And maybe ask them what happens if you don’t take it? It’s always better to feel that you have the information to make an informed decision as to which is best for you? Do you know exactly how much over the range you are and at what point they think treatment is best?
My prolactine was the last time 144. (it has always been between 112 and 150) 2 times a year I get a headache (they last 2 weeks, pain every day headaches) and you can not believe how much fluid that comes out off my nose. It's like something in my head is broken that releases so much fluid. I hope you can understand me because I am from Belgium and my english is not 100% perfect. Also I have A LOT off fluid behind my eyes. (they are constantly swollen)
Hi Sandee, I have a genetic condition called MEN2a and as a result, in amongst other things, had a parathyroid tumour. These cause high calcium and lowVit D. They are very rare but the symptoms I had were a aching bones, especially hips and thighs, anxiety and the inner trembling you describe. There is a condition closely related called MEN1 also rare which is related to various organs including pituitary and parathyroids. Check the AMEND website for info. Prob very unlikely that is the cause but might be worth a look. Good luck x
Hi I'm not sure if my experience will be of any help to you. After my first child was born my periods never returned. I was having what I thought was migraines and blurred vision. I had tests as I also wanted another child. It came back I had underactive thyroid and high prolactin and was sent for an MRI which confirmed I had a tumour. I was put on Bromocrytine which was not very nice but I did manage to get pregnant. Once I had had my baby I had my tumour removed and for a while all was good. I started to feel ill again and was found that my tumour was regrowing again and was offered Cabergoline. By this time I had had enough I felt so ill and refused treatment I just needed a break. My Endocrinologist rang me one Saturday evening and spent a good while talking to me and I agreed to try Cabergoline. It was like I had been given my life back. I started to feel myself again I had energy to be able to do normal things. My tumour went and I was meant to stay on Cabergoline for 3 years but was kept on it for 5. I asked to come of if because eventually it suppressed my emotions I didn't really understand why people thought things were funny I was just very flat I could cry at the least little thing which isn't me. Forward a good few years and I am tumour free and as far as that side of my health is concerned all is good. I'm glad I went on the Cabergoline I always had the option to stop if it wasn't for me. I hope that helps a little bit.
My experience was that it was the right decision to go on Cabergoline it did what I needed it to do. It stopped my tumour re growing . I am sure there were side effects but I don't really remember any so i don't think they were that significant apart from being on it for to long and it supressing my emotions which is why i came off of it . I can't tell you if it is safe for you or not that has to be your decision we are all different. I hope it all works out for you.
With any pituitary tumour it is the biochemical evidence that shows if it is secreting excess hormones,. Often a tumour can't be seen on the MRI, the pituitary gland is tiny, the size of a pea & it can "hide". Presumably they have done a full pituitary panel to check all your hormones? It's worth asking your optician to do a visual fields check to see if the optic nerve is compromised at all, it runs very close to the pituitary gland. Fortunately a prolactinoma can be controlled by Cabergoline, sadly all drugs come with some side effects but the pros far out weigh the negatives.
They did the visual tests and all is oké. Only eye problems I have is Blepharitis-meibomian gland dysfunction. This means that my eye-glands are constantly blocked and I blink a lot and have severe dry eyes. Watching tv or using the computer a lot doesn't work anymore. Thanks for you help!
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Feeling over medicated could someone please give me some advice on these results 
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Please can someone give me some advice?
Going to see Gp on friday and need some info please
