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Hypercalcemia, asymptomatic. Surgery?

By feelingfine116101 | 5 posts, last post
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feelingfine116101

I am 29 years old and was diagnosed with hypercalcemia/hyperparathyroidism when I was 20 during routine bloodwork. I am completely asymptomatic... no bone pain, headaches, dizziness, muscle cramps, nothing. My dexascans are above normal for someone my age. I have been to 3 different endocrinologists and have received 5 different answers about what to do. I have been told everything from my organs are going to calcify and I would die in short order if I didn't get surgery, to I am not a candidate for surgery and should do nothing.
I currently am seeing an endocrinologist at the University of Pennsylvania who recommends that I get surgery for the simple fact that I have this disease and am under 50. My serum calcium levels are at the top of or just over normal, PTH normal and urine calcium normal. I just had a sestamibi scan yesterday and will be doing another 24 hour urine calcium/creatinine (after the lab screwed up the results for the one I did a month ago). I do not know the results of my scan yet, and an ultrasound I had was inconclusive.
Is anyone else out there in a similar situation as me? Anyone know of a surgeon who will do the MINI surgery under sedation (like Dr. Norman) in the area?

hoseclamps83901

You did not mention what your calcium and PTH levels were when you were first diagnosed with hypercalcemia/hyperparathyroidism when you were 20 years old, 9 years ago. I am assuming that they must have been very high. You did mention that your current calcium level was high normal or just above the normal range. and your PTH was normal. You also mentioned that your dexa scan showed that your bone density was better than most men your age. It sounds to me that your disease has regressed to a point where most of your vitals are now normal, and you are currently in very good health. It is therefore hard for me to understand why your endocrinologist at U of P would now recommend that you get the surgery. I am also highly suspicious of the allegation that the lab had screwed up. Most likely they had obtained results that were contradictory to what they had expected, and they thought that they might have screwed up. So they felt the need to conduct new tests to confirm. They did not even trust themselves. If I were in your situation, I would have said no to the surgery.
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feelingfine116101

I should clarify... I am female and my calcium has never been higher than 11.1. I don't remember my PTH, just that it is not above normal range, but was told by the endos that it was high given my calcium level. The lab actually did screw up my 24 hour urine, because they didn't give me the container with the HCL in it the first time. I have not yet agreed to surgery, and given the responses on the other forums having to do with the side effects resulting from surgery, I am very hesitant. I, too, have read parathyroid.com backwards and forwards and Dr. Norman sure does make a good argument for getting the surgery, but it sounds like he may just be a good salesman.

I have been worrying about this since I was diagnosed, and part of me just wants to get the surgery over with so I don't have to think about it anymore!
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hoseclamps83901

Many other conditions can cause a higher than normal calcium level besides high PTH level. Your endos is definitely wrong to assume that just because your calcium level was "high" (actually it was only borderline high), your PTH must have been high too. Trust your instinct. There are medicines that can control your borderline high calcium level without the devastating permanent complications of the surgery. At the very least, medicines will buy you more time to decide whether or not surgery is really necessary. Maybe it is time that you seek a second opinion from someone who is not affiliated with your current doctors.
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mira

I have a similar case where i was diagnosed with having hypercalcaemia/hyperparathyroidism just over a month ago and I'm 20 years old. I feel so unlucky that I have this condition, the specialist was telling me it rarely happens in people under 50.

These are the results that I received after the blood test..

Intact parathyroid hormone - 9.6

Calcium - 2.75

Corrected Calcium - 2.65

Albumin - 48

Both my doctor and the specialist have said that my best option is to get surgery and remove whatever it is in my throat thats causing the increased calcium levels.

The specialist has given me a rough time limit of how long I have before I need surgery which is max 2 years. 

Doctor said if I don't do the surgery, increased calcium levels could result in a heart attack :S

I really hate the situation that I'm in, Im afraid of the thought of needing surgery on my throat and being knocked out for it.

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Guest

I cannot understand how anyone can be diagnosed with hyperparathyroidism if their parathyroid level is normal.  'Hyper' means increased.  Elevated calcium is not routinely due to hyperparathyroidism.   I would never have this surgery unless all three of these criteria were met: 1) the parathyroid level stayed over 100 AND 2) the calcium level was consistently 10.5 or above AND 3) a tumor was identified on the scan or felt during exam.  Calcium levels normally go up and down. One reading does not make a disease.  A tumor cannot hide behind a thyroid. The scan material makes the thyroid image go away so only bad parathyroid glands will show.  Healthy, normal glands do not show.   If someone has this surgery that doesn't need it, the problems they have experienced and complained about will continue.  Get second opinions... there are a lot of hungry doctors out there!

Foot note: Bad kidneys do not filter out calcium very well.  Kidney patients are often treated differently.


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