Parathyroid question

About two years ago I found what I thought/specialists thought was swollen lymph nodes in my neck. There were about 4 that were larger in size and have been monitored by a general surgeon/endocrinologist. They have not grown and all my blood tests were coming back normal. However, this last test revealed a parathyroid level of 7.2. I haven't heard back from my doctors yet. Can anyone give me any insight? I'm trying not to panic...😁

8 Replies

  • Don't panic. It's unlikely you can feel your parathyroids as they are tucked away behind the thyroid and are the size a grain of rice. It would be highly unusual if you had an adenoma on all 4 glands, in cases of hyperparathyroidism where there are 4 glands affected it's likely to be a genetic problem and if so isn't usually treated. Do you know your calcium level ? this is important for a diagnosis. There are variations of parathyroid disease but it's usually primary and the treatment is surgery to remove the benign adenoma. Elevated parathyroid doesn't cause any symptoms but the high calcium does, are you having any symptoms ? There is a ton of info I could give you but this is not really the place, if you want to read more have a look at our forum

    Don't panic !

  • Hi there,

    Thanks so much for the reply. My calcium level is normal at 2.23.

  • It is possible to have primary hpth with a normal calcium but getting a diagnosis will be difficult. You may be looking at secondary hpth caused by other issues, do you have any kidney problems ? or your raised parathyroid may be caused by low vitd in which case supplements may correct it but low vitd is a symptom of parathyroid disease so tricky situation, this is why parathyroid diagnosis takes a long time.

    The bloods you need are PTH, calcium, phosphate and vitd all done at the same time, an ultrasound and if needs be a sestamibi scan, most of all you must see an Endo who has experience with parathyroid disease, many don't, and should you need a surgeon he/she absolutely must have lots of experience with parathyroid surgery.

    If or when you get any further on with this then do post on our hpth forum for more help.

  • Ok thank you so much. I have a ultrasound appointment in a few days then the general surgeon will call me after those results. I'm assuming that with the elevation of this test I'm sure there will be a few more tests to follow. I don't have any kidney issues. I do however, have a few autoimmune conditions. Psoriasis, Gilbert's syndrome (symptomatic), interstitial cystitis, and since I noticed the one enlarged nodule on my right side near where my tonsil would be (they did so a FNA that came back negative) I have felt generally very unwell. I have had general muscle aching/ bone pain, muscle weakness, and really bad nausea.

  • I'm wondering if the Gilbert's has any affect on PTH levels, obviously having other issues can muddy the waters and make diagnosis very difficult, I think you will just have to go with the flow and see what the various tests show but you will probably have to keep nudging the doctors so you aren't left on the back burner too long. I would be interested to know how you get on with the tests and diagnosis.

  • Thank you so very much with your info. I did question the Gilbert's as well. I often need to sit out in the sun to rid my body of the bilirubin as I have noticeable jaundice and I believe at this time it is this that is causing my nausea. As after I get sun exposure I feel well again. I have had notable low levels of vitamin d and iron levels in the past. I will continue on with the Drs and keep you updated. Again, thank you

  • Low vitamin d is associated with many autoimmune diseases. Get your Vit D checked. Long term low Vit D can raise PTH - secondary Hyperparathyroidism

  • Will do! Thank you

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