... Clinic in MN to try to find affected parathyroid gland this month but no success. One symptom I have that I have read on some limited websites that can be a symptom of unresolved hyperparathyroidism is neuropathy. My feet are numb and getting worse. I have spoken to a couple of endocrinologists but they seem to not be aware of this as a symptom. It really is a problem in my everyday life (I just turned 60, no history of serious health issues.) Anyone else heard of or experienced this symptom?
I too went to the Mayo in April, and brought with me test results showing high ionized calcium levels and a positive sestamibi scan. Much to my shock I was told that the scan didn't show anything. The scan was done at one of the best hospitals in this county, and the scan report said there was an adenoma. Because I don't have a high PTH level, I was told I do not have hyperparathyroidism. I have since read that there is about 20% of hyperparathyroid patients will not have high PTH.
What upsets me is I spent all that money for them to tell me this excuse. This is the second time I have been to the Mayo (the first time was for something else) and received no help either visit. I am going to try someplace else because my life is horrible. The longer this goes on, the sicker I have become.
I have thought about going to Dr. Norman, in Florida, but what concerns me is that there is really no aftercare there. Also he charges an outrageous fee, which I find cruel considering people are suffering. I have also read through some of his patients' posts, and although it is rare, there are people that have been left with problems and no other doctors will address them either.
I had 3.5 parathyroids removed in 2009 after a screening showed my serum Ca was 11.2. At that time I had no symptoms, and was shocked. The surgeon said that all 4 were enlarged and my PtH level was too high, but that she had to leave a little or I could not live. Three years later, I had developed peripheral neuropathy and have now suffered with it for 5 yrs. I have been to Mayo twice to see a neurologist, but after 2 terrible EMGs and a nerve biopsy, they still don't know what to do. I was on IV steroids for 15 wks, which was good for walking capability, but they said I needed to get off the steroids. They thought it might be vasculitis, but could not prove it. My PTH is high again, and I will see another surgeon for consult next week. I am very concerned about another surgery, because I read that the success rate on a second surgery is only 50%. Has anyone else experienced a 2nd surgery to remove 1/2 of a parathyroid? No one has ever mentioned a connection between the hyperparathyroidism and peripheral neuropathy, but I think there must be one.
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