Discussions By Condition: I cannot get a diagnosis.

HyperPARAthyroidism - Single gland adenoma or MEN1?

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: vkm416
  • November 23, 2008
  • 06:39 PM

My sister was recently diagnosed with hyperPARAthyroidism, had a sestimibi scan which showed an adenoma (benign tumor) on one of four glands. She is planning to have MIRP surgery to have the tumor removed. I have also been undergoing tests for similar symptoms - PTH was high (80), and blood calcium was high-normal (9.1); bone density test showed osteopenia in spine (T=-1.3). My question is, can one tumor on the scan rule out MEN1? Or could this one tumor just be a symptom of MEN1? If the one tumor is removed, would the MEN1 continue to cause problems if MEN1 is present? I am concerned that if my sister has this procedure done prematurely, it may do more harm than good. If anyone is knowledgeable about parathyroid disorders or MEN1, please share. I also am undergoing tests for autoimmune disorders, have hypoglycemia, have some arrythimias, Raynaud's Phenomenon (fingers turn white in cold weather), have microscopic colitis (lymphocytic), and frequent headachs and possible migraines with aura. Finding a doctor who can diagnose my problems with all these issues has been impossible - not sure which specialists to consult anymore. Please help... if this is a genetic disorder, I would like to help my family and prevent my child from going through same problems. He is often tired and complains of frequent "aching legs/knees" even though X-Rays did not show any problems.

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7 Replies:

  • If you do have MEN1 it will continue to progress after being operated on. Kiera
    Anonymous 42789 Replies
    • November 25, 2008
    • 03:44 PM
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  • Have a look at this, which just came out this week: http://www.nlm.nih.gov/medlineplus/news/fullstory_71769.html
    aquila 1263 Replies
    • November 25, 2008
    • 09:00 PM
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  • From what i've learned Men1 and 2 can cause Parahyperthyroidism without causing any other symptoms, so you can't rule it out because there are no other findings.PTH would increase vit D production, Ca++ retintion by kidney and Ca reabsorption from the bone.. I'm alittle rusty on this so feel free to correct me. it also causes Pi wasting. Men1 is localized to chromsome 11 and is a genetic disorder. and is autosomal dominant, so it's a 50/50 chance of passing it on to children of an affected individual.The PTH levels cannot be allowed to get too high because calcium deposits can start forming in the soft tissues. the Pi (Phosphate) wasting is bad for energy renewal reasons.A person has 4 ParaThyroid glands, so removal of one will not be very detramental. If MEN1 exhists, a new tumor could arise, but it is possible regardless of your action, and 2 parathyroid tumors would be much worse causing all sorts of bone and energy related problems.
    nckmorris 53 Replies
    • November 25, 2008
    • 10:42 PM
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  • Thank you. Now to make sure my docs test for Men1 and 2...
    vkm416 3 Replies
    • November 26, 2008
    • 06:28 PM
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  • Wow, I've never heard of anyone else who has MEN. My mother has MEN -1. My endo keeps insisting that I do not need to be tested for it because it is a "tricky diagnosis" and the doctor likely misdiagnosed her. She also had one of her parathyroids removed and it also had a benign tumor on it. I really would feel better if I did get tested to see if I have the MEN gene but can't get the doctor to take me seriously.
    acsproul 10 Replies
    • December 4, 2008
    • 00:44 AM
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  • Wow, I've never heard of anyone else who has MEN. My mother has MEN -1. My endo keeps insisting that I do not need to be tested for it because it is a "tricky diagnosis" and the doctor likely misdiagnosed her. She also had one of her parathyroids removed and it also had a benign tumor on it. I really would feel better if I did get tested to see if I have the MEN gene but can't get the doctor to take me seriously.I have had a pitutory tumour (begnign) over production of prolactin which was treated by medication and the tumour was shrunk to a size where it could be controled and not pressing on the optic nerver and 4 parathyroid tumours which i was operated on and had 3.5 removed and my sister has had a pitutory tumour and had it removed surgically. We have both been tested for MEN1 and yet the test for the MEN 1 Gene disorder has never been prooved. Now my 11 year old son who has been screened by blood tests for the last 18 months who has no symptoms of anything he is a typical active happy go lucky 11 year old has been told he has an increase in his Chromagranin A and the Doctor wants him to have an MRI on his pelvis/abdomen. Why? has he got MEN1? Do I? Do my sister? What should I be asking doctors?
    Anonymous 42789 Replies Flag this Response
  • To Soobyloo: I have also had a pituitary tumor (removed with surgery). I have been diagnosed with Cushings Disease which causes over production of cortisol and can cause tumors in the pituitary gland and adrenal glands. My endocrinologist (I am no longer seeing him but at the time I did get a second opinion) explained that the because I have Cushings disease and a pituitary tumor I cannot have MEN and will not get it and do not need to be tested for the gene. Apparently, you cannot have both. Unfortunately, the tumors are still hereditary. Now, my mother has MEN-1 and I have Cushings disease and the pituitary tumor. Either can be hereditary. They are both very rare diseases but apparently I have inherited my disease from my mother b/c of the MEN. It just manifested a different way in me. As far as MEN goes, my mother has had one parathyroid taken out b/c it had a tumor. About a year after that she was told she needed a second parathyroid out b/c of another tumor but she has had two strokes and the surgery could be too dangerous for her. She has decided not to have the surgery. She is not in very good health. My Aunt (mom's sister) also has MEN-1. My grandmom had 5 children and 2 have MEN. The others never see doctors but do have health problems so it's questionable whether they have it too. nckmorris is correct in that there is a 50/50 chance of passing on the gene for MEN. It is likely that IF you have it your son will have some kind of health complication but I believe that studies show that most health issues due to MEN will manifest themselves between the ages of 20-40. Also, like I said, I was told that I could not have MEN if I had the pituitary tumors. If it were me I would definitely have your son get the MRI if that's what the doctors say he needs. It can't hurt. Hopefully, the MRI shows nothing and it is a false alarm. If so, my advice would be that your son should definitely have very thorough regular check ups, much more thorough than the average child's regular check up. I would especially have thorough blood tests done regularly. The blood tests will show issues of concern as long as the right things are being tested. This way, if something does show up it is caught right away. Also, always be wary of fatigue and unexplained weight gain as these are two early symptoms that usually go ignored. I hope all of this helps.
    acsproul 10 Replies Flag this Response
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