Widespread pain for 8 months: Could I have primary hyperparathyroidism? PTH of 70.3 pg/mL, Calcium of 10.9 mg/dL

[hooloovoo]

Hello! I am not having the best luck getting people to respond to my posts, but I will give it another shot. I have had a lot of widespread pain for the past 8 months and after having lots of tests, one of the only things that comes up consistently abnormal is calcium level. In the 5 times it was tested in the past 8 months, the numbers were 10.4 mg/dL, 10.32 mg/dL, 10.9 mg/dL, 10.3 mg/dL, and 10.4 mg/dL. It is always high and outside of the normal range. Most doctors didn't think the numbers were too high, so I didn't get the PTH tested until last week. It was 70.3 pg/mL. The reference range for normal results was listed as 72 as the upper bounds, but online I have found lower numbers as the upper bounds such as 65 pg/mL. A few months ago I had the Vit D level checked and it was 21 ng/mL, which is too low and outside of the normal range. I have been taking Vit D supplements and the Vitamin D level is coming up: it went up to 36 ng/mL and now it is 42 ng/mL. Even though the Vitamin D level is going up with supplementation, the calcium level is still high. Can someone let me know if this sounds like it is consistent with primary hyperparathyroidism and offer me suggestions? I am going to my first endocrinologist next week and want to make sure I know what I am talking about. I had been thinking that it was fibromyalgia. Thanks!

[hooloovoo]

Thanks again. I looked at that main parathyroid site yesterday. I had known about this condition and that website right from the very beginning, but none of the doctors thought the calcium was a problem, so I didn't look at it closely. It seems odd that many doctors don't seem to be on board with Dr. Norman and his associates. You would think having done 10,000 surgeries and focusing exclusively on the parathyroid would make them experts. It does seem that all of my lab results fit well into what they consider to be the primary hyperparathyroidism range.

[Super_sally888]

Ah, Dr. Norman is the one who has the website on parathyroid.  I beleive he is credible and it would be worth contacting them for an opinion.

[Super_sally888]

Your doctor is wrong not to treat unless your calcium gets higher.  It is already abnormally high and that calcium is coming from your bones (which is why you are having pain).

You need to get a second opinion and you need to keep on about this.

I would imagine symptoms can come on suddenly.  Usually hyperparathyroid is due to overgrowth of one of the parathyroids.  It would reach a critical size and then symptoms would start.

there is a website for parathyroid. The doctor is in the US.  You could write to them and send your results to date and ask for an opinion.  Surely it would be worth it to get properly treated.

[hooloovoo]

Thank you. I am kind of stunned right now because I was convinced I had fibromyalgia. My doctor said he did not recommend having surgey unless my calcium levels were higher. Has anyone had surgery with James Norman or his associates in Florida? Should I see them rather than trying to do something where I live?

Also, my symptoms came on suddenly. Is that normal for hyperparathyroidism? Thanks again.

[helyanna]

I am of the same opinion as Super_sally888.

[Super_sally888]

Hi,

High calcium is NEVER normal.  The low Vitamin D could also be your body's way of trying to adjust.  Your PTH is also high considering that your calcium is high. Yes, this does point to hyperparathyroid.  Including the pain.

Please let us know how you go with the Endo.  I hope you get one that is enlighted and will help you.

Remember High Calcium is NEVER normal so don't be brushed off!

[Ladyrumrunner]

Wow I read that wrong. Sorry not sure about the parathyroid

[Ladyrumrunner]

Only a thyroid panel will tell you if you are hyper or hypo thyroid. Sorry I could no be much more of a help.