EndocrineWeb Community Advice

Hyperparathyroidism, but "normal" calcium levels?

From: johnathanhebert - 4 years 27 weeks ago

Hi,

After lots of research, my wife and I believe that she has hyperparathyroidism... we have read Dr. Norman's website parathyroid.com and after learning about it, we asked her endocrinologist to measure her PTH and calcium levels... he said he would first measure her calcium and if it is elevated, then he would measure her PTH... but he really did not think that was the problem.

Her calcium came back at 9.4, which I believe is in the "normal" range, but according to Dr. Norman's website, it is possible to have those measurements and still have hyperparathyroidism. Has anyone had hyperparathyroidism, but low calcium levels? She has had 2 kidney stones, which Dr. Norman suggests could be correlated to the fact that the blood calcium levels are normal, since the kidneys are working overtime... does that make sense? Can anyone relate to this situation?

Thanks!

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I have been having the same results for almost a year. I have elevated pth 88-95 (4 tests over the last year) and in the beginning had very low vit. D. My doctor referred me to an Endo. and she put me on high does of vit. D (Oct. 2009). The last 3 blood tests have showed normal range of vit. D and calcium and still high pth. Endo. is still saying that vit. D is cause, yet I'm in normal range and she wants me to stay on same dose (2000iu daily). I am very frustrated and too damn tired to be much of an advocate for myself.
I feel your pain.

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Yes, I can relate. Fortunately, my urologist obtained the initial PTH for me and it was significantly elevated (more than double the high end of "normal", although my serum calcium was only 9.3. In addition to twin huge kidney stones earlier this year, my urine calcium levels were significantly elevated even during a repeat after making dietary changes. Endo confirmed the high PTH and 9.3 calcium again. Dr. Norman indicated that a little more than 2% of his patients had lab results like mine, and all had parathyroid tumors--I fall into the "confusion area B" part of his advanced diagnosis page on his website, and the kidney stones with high urinary calcium levels confirm the diagnosis for him. I will likely follow up with him, but I will probably wait for a couple of weeks to see one more calcium level and PTH level, and a bone density test result.

She REALLY needs the PTH numbers. Most doctors dismiss the possibility of primary hyperparathyroid disease if the calcium levels fall anywhere in the "normal" range. Dr. Norman seems to shoot straight, and if he isn't pretty sure that you have an adenoma (tumor), he will tell you.

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Kirstencarrie,

Take a close look at the advanced diagnosis page on Dr. Norman's website and compare the graphs with your results. If you still have questions, email Dr. Norman with your results. He posts a link to his email address on his website and he does answer his email.

My PTH was significantly higher than yours, I also had two 24 hour urine tests with significantly elevated calcium levels, and I had two huge kidney stones. That could give me a different response than you receive.

Good look!

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I can relate. I had normal Calcium levels for 8 years, around 10 so it never alarmed my Dr. I grew very ill, no kidney stones. I went for a rountine Dexascan with severe osteoporosis found. The Dr. thinks I had the condition for 8 years before surgery. I feel like a new person now that the tumor was removed. I did have a scan that showed the turmor.

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good luck I wish everyone with a adenoma could know how good they will feel after surgery. I will never understand why it took 8 years for it to be found by me and my doctor. I am a nurse so I kind of tuffed it out and doctored myself alot. That was not a good idea.

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First of all, I would like to appreciate the choice of theme that you have chosen for your blog, it looks perfectly wonderful. Now,coming on today's post I must say that you have explained thesubject in a concise manner that makes it easily understandable.
Thanks for this information.

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I'm new at posting on accounts like this and don't know if this one is active or not but I read this thread and am wondering where people are at now with this problem. I am very concerned. My calcium level is normal (9.4) but my PTH is anywhere from 150 to 210 and has been for over a year now. I had gastric bypass 8 years ago and my endo doc believes I am not absorbing calcium. I take 50,000 (yes, 50,000) units of Vit D daily and 2500 mg of calcium daily. I break the calcium up to 500 mg doses 5 times a day. My endo doc says my calcium level is normal because my body is sucking calcium from my bones to make it normal. I am recently diagnosed as having osteoporosis. I cannot take bone building meds due to such high PTH. I am very scared. Does anyone have any suggestions or help?

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Hi Donna,

I have recently been diagnosed with hyperparathyroidism. My calcium is at 10.6 and my PTH is 100. I am still going through the process but am likely going to undergo surgery.

Can I ask what your doctor is suggesting? Do you have any symptoms beyond the bone density issue?

James

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I'm wondering what your surgery is for. Did they discover a tumor? My doc said that is a common reason for hyperparathyroidism but I do not have a tumor and he believes it is due malabsorption. He thinks it is because I am not absorbing Vitamin D. He recently upped me again. I now alternate between 50,000 units and 100,000 units of Vit D every other day. These are toxic levels and I'm afraid they are still not working. I do believe it is creating another very serious problem. I have heart valve disease and in the past year it has rapidly progressed to a point we are discussing transplanting two valves. Just two years ago, my cardiologist thought that may be what I might need to do in about 10 years. After last year he thinks it may be necessary next year. My high PTH and the rapid progression of heart problems are occurring at same time. I've been dealing with them separately but now am thinking they are related. I've read where Vit D deficiency can increase heart problems. I'm making appts with both cardiologist and endocrinologist next week and ask them about this. If they don't agree or I still can't get my PTH to normal levels, I am going out of state to renowned medical center to see if they can help me. (I live in Alaska and we have good doctors here but so far no one can get this under control). Do you check your Vit D level? I'm discovering just how important it is.