Anyone know if you can have hyperparathyroidism but have fluctuating PTH and calcium levels (between normal to high)? I have all the symptoms of hyperparathyroidism, it runs in my family, and I've had several high calcium readings in bloodwork. However, about every 3rd time I've had bloodwork, my calcium has been back in the normal range. I got sent to an endocrinologist and she did blood work for PTH but it was normal. But, my calcium tested normal that day, too. Anyone know anything about this? I feel tired and lousy a lot, so am trying to figure out if I need to be a little more pushy at the Dr's office.
Also, one more question. I had a cervical spine neck MRI done recently for an unrelated neck problem. They did one set w/out contrast, and one set with a gadolinium contrast. If I had a messed up parathyroid gland, would it have shown up on that or is it too low in the neck? Not exactly sure of location...
I have done some research on hyperparathyroidism, as I had surgery to remove two parathyroid adenomas. Since I continue to have problems with the 2 remaining parathyroid glands, I hope I can find a doctor to order a special type of PET scan. However, most people with neuroendocrine tumors need to be aware that an ordinary PET scan will not locate the neuroendocine tumor(s). If you have a good doctor/surgeon, then he will know what to do. I have been reviewing clinical trials and research studies since this problem with endocrine tumors are very complicated. If possible, you should request: a PET scan with 11 C-5-hydroxytryptophan. However, there is another drug/medicine that should also be administered one hour befoe the scan and it is called Carbidopa. This helps the imaging of possible tumors and has a higher rate of discovery. I had a sestimibi done with a regular CT scan, which did not show anything. When the doctors at Tampa did a sestimibi with SPECT, then one of the tumors showed up. Good luck!
YES! YES! YES! Check out www.parathyroid.com. This is a website hosted by Dr. Norman. He is the leading expert in the US on hyperparathyroidism. He specifically addresses your question and the answer is YES!!! It is normal for people with a PTH tumor to have fluctuating calcium levels that sometimes even fall in the "normal" range. And you can have a normal PTH level too! All the info is on his website. Check it out. Good luck and keep us posted.
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