PHPT, how should I proceed?

[helyanna]

I got the diagnosis of primary hyperparathyroidism yesterday. No surgical operation of parathyroids will be done in the near future and no sestamibi scan. I must wait for the disease possibly becoming worse, for instance to cause higher blood calcium levels or kidney stones.

My shoulder was injured in 2008 when I fell over. I have a titanium screw in the shoulder. The screw has become almost uncovered. I think that bone has disappeared around it due to PHPT. The screw should be taken away in an operation. I think that when time is going on, PHPT will become worse and the shoulder operation will become more difficult to do. I had not time to discuss this with the doctor, as I could not ask many other questions either ( I had 2x30 minutes time). Just now I don’t have pain in the shoulder and therefore don’t like to go to the operation. But sometimes I have pain and weakness in the shoulder and neck spine. I am of the opinion that the pains may be due to PHPT. Do you think that the screw should be taken off soon or can it wait longer?

I usually feel bad for one to two days after anaesthesia. Thus I am afraid of surgical operations. I think that my electrolytes are in disorder. I often have hypernatremia and polyuria. Is it usual that serum calcium gradually rises in the course of time? My polyuria may be due to low ADH and high calcium.

I have taken magnesium for my leg cramps. Last night I had severe cramps and could not sleep. Sometimes I have heart rhythm problems and high tension (going to carry holter EKG tomorrow). The doctor did not allow me to take vitamin D more than 10 microg daily, although I have taken 50 microg previously. I’d like to prevent my calcium being lost. I have tried to build up my muscles but have not succeeded to do so.

The doctor said that my symptoms do not result from my slight hypercalcemia.

[helyanna]

I know that it is not normal, but here in Finland hyperparathyroidism is not treated if it is not severe. Calcium levels should be high or one must have kidney stones or osteoporosis or something else.

I had the milder bone disease, osteopenia in 2008. I began to take calcium and vitamin D. Then I could not tolerate calcium but continued and increased vitamin D. It improved my bones to normal (this year). I'll take 50 microg vitamin D although the doctor forbad taking so much.

Maybe I try to find a third doctor to ask his opinion. As to the shoulder, I think to wait till the screw loosens totally from the bone.

[Super_sally888]

Hypercalcaemia is NEVER EVER normal.

Have they done a bone density scan.  If your bone density is low action should be taken.  If 2 scans a few months apart show progressive loss, then even more you should be taking action.

If you are in the US there is a centre that specialises in hyperparathyroidism.  Just type in hyperparathyroid and their site will come up.

Be agressive in this and finding a solution.  Your leg cramps and other problesm could also possibly be caused by the high calcium.