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Happyheart20 · 02-07-2013, 09:35 AM

Have had fluctuating high calcium levels for several years. pth levels are are in the normal range. Dexa scores have declined every year. now in the osteoporosis stage. Finally found a endocrinologist who thinks it is hyper parathyroid. He will be setting an appointment with Dr. Shelby Holt at UT Southwestern in Dallas Texas. Anyone have any experience with her or with parathyroid issues.

Trinity12 · 02-11-2013, 01:24 PM

I had both parathyroids on the left removed in separate surgeries. That was quite a few years ago. I had kidney stones surgeries as well. I had osteoporosis for a while but now I have osteopenia. My pth levels are high and my calcium levels have been fluctuating between high and high normal. I used to be tested every six months but that has moved to being tested every three months. I'm still waiting to find out the results of my latest blood tests. The symptoms of constant fatigue, bone pain, and stomach issues are back. My endocrinologist said that all four of my glands are enlarged so she thinks I will require a third surgery.

I hope that you will be sent for a sestamibi scan(parathyroid scan) and that your endocrinologist appointment goes well. Please keep us posted of what you find out.

kselibrary76 · 02-19-2013, 11:34 AM

Quote:

Originally Posted by Happyheart20

Have had fluctuating high calcium levels for several years. pth levels are are in the normal range. Dexa scores have declined every year. now in the osteoporosis stage. Finally found a endocrinologist who thinks it is hyper parathyroid. He will be setting an appointment with Dr. Shelby Holt at UT Southwestern in Dallas Texas. Anyone have any experience with her or with parathyroid issues.

My scans came out negative, my surgeon and endocrin say this happens quite a bit. I have surgery on Tuesday, Feb 26th (one week from now...YAY).

I have had high fluctuation high calcium levels for 6 years. My new endocrin did a couple urine collection tests that show the same. My Dexa scores have declined and I have osteoporisis and osteopenia depending on where they look. My spine is worst.

I have bone pain. I have trouble sleeping. I have muscle fatigue. I have hair loss.

My PTH was never high. 12% of parathyroid patients present as we do Happy Heart. I can't wait for this surgery.

My doctor says that doctors tend to keep doing tests to watch the calcium level, over and over, waiting til it hits a magic high, like 11. They then keep checking the PTH as well. If it comes back elevated they have an easy, YEP. But if it is normal and you have high calcium you still have parathyroid disease. High calcium and ANY PTH LEVEL that is not very low means you have hyperparathyroidism. is a quote from another doctor, but it is what my endocrin and endocrin surgeon believe.

I'll try and come on after surgery and tell you what they found

Trinity12 · 02-19-2013, 11:53 AM

I wish you luck with your surgery kselibrary76! I'm glad that you have an endocrinologist who pays attention. My endocrinologist used to be but since she referred me back to my family doctor all I do is play the waiting game! I'm sorry to hear that you have osteoporosis and osteopenia! I had osteoporosis before but now My pth is high and my calcium has been high to high normal. Since it's right on the borderline it hasn't reached that magic number of just one more point over their range! It's very frustrating! I used to have the 24 hour urine tests but haven't had any for a while.

Did you get a sestamibi scan? I'll be interested to find out what they say.

kselibrary76 · 02-20-2013, 08:50 AM

I did have an ultrasound and sestamibi scans.

The ultrasound shows what they feel is likely the adenoma peeking from behind the lower right lobe of the thryoid. It is hard to determine as my entire thyroid is covered with little nodules.

The sestamibi showed nothing.

My PTH is always normal and with my calcium high the PTH should be off (likely low if I understand what the doctor was trying to explain). If your calcium is high it should be kicking OFF those parathyroids as they don't need to send the signal to your bones to put calcium in your blood, meaning your pth should then be low? I think that is how the surgeon and endo explained it.

I am happily anxious for this surgery and hope they find something and fix it

They all seem confident that something has to be wrong.

If you are not happy with what is happening with you, you might want to consider finding a doc who won't wait for that magic number. What does it matter what the number is, HIGH IS HIGH. All my docs are adamant about that.

Parathyroid disease will destroy your kidneys and heart I've been told, I'm glad they are jumping on it! Good luck to you. Surgery is Tuesday...when I'm able I'll come on and let you know what happened.

Trinity12 · 02-20-2013, 09:00 AM

I've never had an ultrasound of my thyroid. Yes, is calcium is too low the parathyroids kick on telling calcium to be released from the bones. If your calcium is too high the parathyroids are supposed to be off. Calcium should be low if pth is high. I wish that I could get another doctor but there's a shortage of doctors here and only one endocrinologist. I wish you success with your surgery. Please keep us updated with the results.

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