HIGH PTH, high normal Ionized Ca

[Nillie74]

Hi Dr. Lupo,

I am a 35 yr old female with osteoporosis (T-score is -3.8).  I have many other symptoms of paraythyroid disease.  I recently had a PTH test and it was 108 (range: 15-75).  My serum ca was only 9.3 (range: 8.4-10.2), but my IONIZED calcium was 1.3 (range: 1.16-1.32).    My vit d 25 hydroxy is 23  (range:  30-80).  My doc always tries to give vit D, but I cannot tolerate it.   It makes me so fatigued and achy and just feel awful - but can't explain it.  Since the Ionized ca was high normal and the PTH is so high, do you think this might be consistent with parathyroid disease?   I think because the ionized was only high-normal and not above the range with a normal total ca level, I may not get anyone to take me seriously.   Any help is appreciated!   Thanks!

[TamraW]

I do believe that you can pay in installments. However, make sure you also get your TGab and TPOab antibodies tested to rule out Hashi. The symptoms of Hashi and parathyroid disease are similar.

DO NOT let a doc tell you your thyroid is normal without those tests. My first two endos looked at a normal TSH and FT4 and said nothing was wrong with my thyroid, however these levels fluctuate with Hashi and the ONLY reliable tests are the antibody tests and ultrasound of thyroid.

If Hashi is not the issue, then you definitely could fit the bill for parathyroid disease, especially with so much bone loss.

Best of luck
:) Tamra

[TamraW]

Nillie, I ended up not having parathyroid disease, but I did pay for the $1500 consult. The doc told me I was barking up the wrong tree. After my D levels came up, my PTH and calcium returned to normal.

Dr. Norman told me to get checked for Hashimoto's. I went back to my endo and asked for the TGab and TPOab antibody tests and tested positive. I am now being treated for Hashi. Low D levels are common in Hashi and they can make the PTH and calcium go up a little. My PTH went up to 71. My calcium went up to 10.4. My D was between 18-41. The current standards for D are outdated. It should be above a 60.
:) Tamra

[Nillie74]

Thanks Tamra!   Yeah, I thought I was in the expert forum, and then once I posted it, I realized that the "medical" community were not doctors.   I have read Dr. Norman's site a few times and I have always thought I wouldn't want to go anywhere else.  But, I think my case would be tough to diagnose because my serum ca is normal and the ionized is the one that is always high normal.  I have only had one ionized ca level that above the range and a few times when my serum ca was 10.2.  

Did you have surgery with Dr. Norman then?  I think he requires you to pay the entire surgery costs upfront and then you get reimbursed by your ins company.   Is that correct?

I also have Cushings Disease.  I had pituitary surgery last August and still have hypercortisolemia and will probably be having a bilateral-adrenalectomy this year.  

Do you think the ionized calcium at 1.3 (high rang is 1.32) is high enough with the 108 PTH to be considered one of the helpful 3 tests?

Thanks for your help!

[TamraW]

This is a patient forum, not an expert forum. Dr. Lupo isn't on here. I can tell you with my experience with parathyroid disease, the surgeon will need to see three tests, once per week for three weeks. PTH, serum and ionized calcium. Get those labs and come back here and post the results. You can also repeat D levels if you want.

With parathyroid disease, the calcium levels will jump around, as will the PTH, that's why you need more than one test to confirm this pattern.

If you are positive for this disease, I'd only trust Dr. Norman at www.parathyroid.com . His incision is very small. You only need a bandaid and you are eating dinner with your family that night.  Otherwise, most other docs give you the 6-10 inch incision as in thyroid surgery.

Best of luck...
:) Tamra