Hyperparathyroidism blood results

[greeneyedraven]

Anyone had High Calcitriol (85) and High PTH (78) ? ?  This time, calcium was 9.1 but I gave up all calcium last month and drink tons of water.  Nurse told me the only way to lower calcium levels was to flush it out.  I had some lasix back in February and it worked.  Dropped my 10.5 calcium to 9.6 in 2 days.  Feel better too.... but no calcium intake isn't good either.  Still fatigued and achy but headaches, nausea, most of flank pain, and occasional vomiting have stopped.

And another question is..........anyone have fluctuating CALCIUM with elevated PTH ?

Endocrinologist blew me off and said I had kidney failure and probably needed more vitamin D.  I have one kidney so that startled me.  That and being angry over being blown off led me to pay out of pocket for a kidney specialist and CT.  Verdict : see an endocrinologist about parathyroid tumor/nothing wrong with kidney to cause declining function.

[Red_Star]

Fluctuations of calcium is a red flag.  The diagnosis page from the parathyroid website states this: "If you can read and understand this ONE page, you will know more about parathyroid disease than 90% of doctors." O_o

This info below is from the advanced diagnosis page...

"Summary: The Diagnosis of Primary Hyperparathyroidism.

In summary, the diagnosis of primary hyperparathyroidism is made by looking at a patient's clinical presentation and their labs. NOT their x-rays. Most have a chief complaint of fatigue, but many other symptoms will be present in the vast majority of patients. As long as you understand that patients can have primary hyperparathyroidism with normal calcium levels or normal PTH levels, you will be able to make the diagnosis in almost every case.

Remember, it is almost never normal to have high calcium levels, and this should typically be worked up with the presumption that a parathyroid tumor is present. Also remember that calcium AND PTH levels in normal patients are very constant from week to week, measure to measure... while those with primary hyperparathyroidism have calcium and PTH levels that go up and down from day to day, week to week. They are variable. There is no medical reason to "wait 6 months and get more tests". The patient either has a parathyroid tumor or they do not.

The key to making the diagnosis of primary hyperparathyroidism is REPEATED measures of 1) serum calcium, 2) ionized calcium, 3) PTH. Measure them weekly for 2 or 3 weeks and the diagnosis will be clear in almost all cases. Adults over 30 live in the 9's, not the 10's. Teens and young adults in their 20's who are building bone can have calcium levels up to 10.2 on more than one occasion. Generally, this is not true for adults over 30.

There is no reason to wait any more than 1 week for repeat lab tests, and there is no reason to get a urine calcium level on the vast majority of patients--its a test with no value. Finally, remember that getting scans is NOT part of the diagnosis of hyperparathyroidism. Ever."

[Barb135]

I'm not an expert on parathyroid issues, but I certainly think you need a different endo to help you, or even a pcp or ENT.  

Here's a site from which you can get a lot of information on parathyroids:
www.parathyroid.com.

From what I've read, the only way to treat a parathyroid issue is to remove the offending gland(s).