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EndocrineWeb Community Advice

M.E.N Type 1

From: jpodbury - 10 years 31 weeks ago

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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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!

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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).

Is this good advice?

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.

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I am so frusrated.I have 5 grown children. All were concieved and born long before I diagnosed my own parathyroid disease.Chief Cell Primary parathyroid hyperplasia. 3 of them have unususal health problems. I became very mentally unstable each time I became pregnant. I began having repetitive fractures from the age of 29 and ongoing to date. I have had a prathyroid surgery to remove 3 and 2/3 parathyroid glands at the age of 53. In 2010 I had to undergo a 'whipple' surgery of 8 and 1/2 hrs to remove most of my pancreas and various other damaged organs in part and in whole as they had been packed with calcium stones. Prior to that I had 26-28 surgeries to remove embedded calciums stones from my pancreas which were 'packed' with embedded stones . My kidneys were discovered at 35 years old to be packed with stones and I had by that time lost 40 percent function and have ongoing chronic renal failure.At 38 years of age my abdominal aorta was found to be cacified My teeth began breaking off at the age of 24 with no cavities. I do not understand why the physicians still seem to blackball me as though I have been a malingerer? I do not understand how I had to undergo all the degradation while clearly stating my problems and 33 years into telling them truly what I was feeling and having emotional breakdowns with each subsequasnt pregnancy that now it is still these inept diagnosticians that degrade and deny me the justice of validating and defending the devastation they have caused to my life. How can I manage to continue living while I have undergone such great harm due to their lack of skill and consciense. Why can I still not get compassionate care even when it is not my desire to attain financial compensation. I have been and continue to be degraded by these men/women Ihad confidence in. How is it that I am now at 58 the one to be demeaned still by them. Why can I not get them to look at other problems that still need addressing like pituitary problems that are too obviously a part of the MENS 1 syndrome I inherited and have definitely passed to my children? Why do these people that should have helped me and were unfortunately paid for by the medicaid program still enjoying a lavish lifestyle ,they did not diagnose me. I did with obviously help of Almighty God. I am still demeaned and degraded and they skate by without any accountability. How do they live with themselves? How do I live. I was 19 when I began my symptoms and at 53 I diagnosed the cause of all this devestation. Now at 58 I watch helplessly as I see my own beloved children begin to have related health issues. How do I help them? Who will help them? What can I do? Please find some way to hold accountable those men and women who devestate those of us too ill to advocate for ourselves.this is just NOT right......


Is this good advice?

I know how you feel, I had tumors in my pancreas as a newborn, and surgery to remove my pancreas, subtotal pancreatectomy in 1973 and 1974. Since childhood I have developed type 1 diabetes, hypothyroidism,, pcos, endometrial cancer, and now have had a diagnosis of hyperparathyroidism. My intact PTH is 17.7 ''inapropriate normal, with high calcium level above 10.4.
I know the way you have to struggle through your day, and the symptoms, tiredness, fatigue, wwakness, foggy thinking, the whole ball of wax.
I hope we can chat at some point.