Parathyroid?

Hello, I have high (10.8) to high normal calcium and high pth vitamin d was a little low so Dr put me on a high dose and it made me feel so awful I couldn't function I haven't felt well for a long time (moody, depressed, exhausted and constant spacey feeling with ringing in my ears) he did a parathyroid scan and it was negative I'm at a loss as to what to do now but I'm so tired of feeling bad! any advice? they suggested calcium supplement bit I'm afraid to try that since calcium is already high

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  • Litzinger,

    High-normal calcium and high PTH indicates primary hyperparathyroidism which is usually caused by a benign adenoma on one or more of the parathyroid glands. 96% of primary hyperparathyroid patients will have low vitamin D. Your instinct is right you should not supplement calcium when calcium is high-normal.

    patient.co.uk/health/hyperp...

    parathyroid.com/

    I recommend you contact hyperparathyroid.org.uk/ for advice.

  • Thank you for the reply! does it matter then that the scan was negative? also, I don't consume a lot of calcium, could that be causing this?

  • Litzinger,

    It won't be anything to do with the calcium you consume. Please ask for advice on the parathyroid form I linked.

  • That is the problem in the U.K., endocrinologists and endo surgeons always want something to show up on an ultrasound or a sestambi, so unless your calcium and pth are sky high you have very little chance of a proper diagnosis. I've been there and got the t-shirt and am over £6000 less in private appointments and scans in the last 18 months. The famous parathyroid clinic in Florida are the only people who don't rely on scans and purely on blood tests and it definitely sounds like you have primary hyperparathyroidism. That Vitamin D dosage is so old hat but they still recommend it. Have you ever had a dexa scan as primary hyperparathyroidism if it's bad enough and over a space of time causes osteoporosis. A decent specialist/GP will suggest a scan of the non dominant forearm. I hope you have some success.

  • I had 3 scans - all negative but had a ademonas. The body lowers your vitamin d to try to compensate for high path and calcium. Sounds like you have hyperparathyroidism like me. Get app from Norman Parathyroid Center. I had to use this and self diagnose until I got in touch with these docs at Normon in Tampa Fl. Best of luck

  • Have you had both sestamibi and ultrasound scans? I was suffering like you, and the endocrinologist I saw said there were no symptoms to having hyperparathyroidism... this is not the case, luckily a new gp sent me for a second opinion to a professor, he was magnificent, and had large adenoma on one parathyroid gland, which was removed... immediately felt better, certainly lots of information on the Norman centre website, they are based in America. I still have lowish vitamin d, and take this with vitamin k daily, I did not get on with the vitamin d that was first prescribed to me, but fine on the current one. I live in the south of england, and if you want to pm me, I will be happy to supply the name and contact details for the professor.

  • I was told that sestamibi doesn't always show clearly which of the four parathyroids is not doing a proper job and only on the operating table, the neck is most relaxed and the surgeon can find the faulty one (or more than one, as the case may be).

    In the States, I know they rush to operate the parathyroid glands, but in the UK, I preferred to be monitored by having Dexa scans every few years. I was told and also read that one shouldn't take too high a dose of vit D so one has to talk with the endocrinologist after making sure that one understands how the parathyroid works. Also, if one decides to go ahead with such an operation, one has to choose a surgeon who has a lot of experience in this type of operations. My GP told me that this operation demands a very skilled surgeon (but these surgeons have to learn on some one. .....!)

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