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Just wanting to get in touch with people who have Multiple Endocrine Neoplasia. I was diagnosed with a macro pituitary adenoma when I was 28 after wanting to have a baby and not being able to become pregnant. I started on Bromocriptine 2 tabs per day which was a nightmare of a drug, made me so sick but it was safe to use while pregnant. After I had my son I was then put onto Dostinex 1/2 tab per week, while that only makes me feel awful for a few days after taking it, (I take it at night, have pain killer and spray my nose with a nasal decongestant and try to sleep through the effects)none the less it's not much better. I then found a lump in my thyroid gland and further testing revealed high calcium levels and a parathyroid adenoma aswell. Had surgery in my 30s to remove half thyroid goitre and parathyroid. Have yearly testing on pancreas for gastrin etc etc. On thyroxine for hypothyroidism, which as of today have just doubled my dose to 100gm and feeling quite off, bit spaced out. Now in my early 40s and hope that my pancreas doesn't decided to get over producing. Kinda stopped worrying years ago after every hurdle that came up, one year at a time, i guess however at first it was a nightmare and very depressing. Sometimes gets me down with the effects of the drugs and tiredness, feeling old before your time. Hope the new dose of thyroxine kicks in and makes me feel good again, still think I might be taking too much but testing will put it right.
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3 Responses
I am presently researching MEN as a secondary cause of my illness.
I have several things I would like to address directly to your illness, though. I would very much like to know what your current calcium levels are, as well as your PTH intact levels. I must confess, I have just returned (2 wks post op) from the Norman Parathyroid Cntr after having the MIRP surgery. I am having a hard time in your situation understanding how your doctors know if they removed the correct diseased parathyroid from you. Did your Sestamibi scan "light up" the actual diseased one? And have the above mentioned levels returned to normal?
Also, please tell me if you have had the genetic testing done to determine that you are not MEN II.
I only ask because I, myself, also have bi-lateral adenomas (adrenal glands). I am currently researching having my epinephrine tested. I also want to keep an eye on my calcitonin levels.
You sure do sound like your parathyroid issue was never properly addressed...anyway, sorry for so many questions. Just call me concerned! Awaiting your response eagerly!
Hi there. Yes my Sestamibi scan showed two bad parathyroid glands on my right side and so I had those two removed (my calcium level was 2.6 I think). Funny thing was I also had a goitre on my thyroid on the same side as the two bad parathyroid glands. They say it's unrelated as thyroid isn't a MEN related gland. So had half my thyroid removed at same time. My calcium levels returned to a normal level straight away (2.2) and haven't gone back over since my Operation 5 years ago now. My Endo surgeon said I will probably have to have the other side removed at some stage of my life. My parathyroid is fine now but it's my thyroid that I'm trying to get control of. Yes I had genetic testing done for MEN Type 1. It was determined that I have a strain of MEN Type 1 as I haven't any pancreatic tumours yet (touch wood).
Hello jpodbury,
I am 31 years old and have been diagnosed with MEN 1 since I was 25. I had an adenoma on my parathyroid removed and have a small adenoma on my pituitary for about 2 years now. I have not had my period in in a year and a half and have delayed going to my doctor for over a year now. I just went last week to get back on track with my health. I want to get pregant in the next year or 2 and wanted to ask you how long did it take for you to become pregant? Other than the possibility of passing the gene on, were there other risks? How was your pregancy?
I look forward to your response.