Not a parathyroid issue? What next if anything?

[sophie50]

I haven't been on for a while as I have been told by my Endo that my HypoT (Hashimoto's) has been stabilized with my current meds (Synthroid 62.5mcg Cytomel 5mcg). Last test results were:

TSH 0.88
FT4 0.95 (.58-1.64)
FT3 3.9 (2.3-4.2)

The problem that I am having is that I am just SO fatigued and my hip bones are so painfully sore! Something is off and I can't figure it out. Doctor says calcium is not high enough to worry about but it seems my body is producing calcium even with low Vitamin D levels??

Calcium 10.5 Previous readings 10.5, 10.3, 9.5, 10.1 (ranges 8.5-10.2 or 10.5)

Ionized calcium 1.35, 1.41, 1.42 (1.17-1.32) Every test has been highDoctor says this test is unreliable!

Vitamin D 24 (40-100)

PTH 27, 22, 14, 12.4 (12-65)

Phosphorus 4.5 (2.5-4.5) I do NOT drink soda.


Doctor prescribed Vitamin D supplements(50,000IU) to be taken twice a week again. My concern is the discrepancy between the below normal Vitamin D and the calcium level My understanding is that the purpose of Vit. D is to help absorb calcium (amongst other things). If my calcium is at a high normal level, do I really need to increase absorption and an increase in Vit. D? The follow up question is, with a low level of Vit. D how is my calcium so high? Where does the calcium come from if it is not being absorbed in the intestines? Is the blood measurement of calcium the measurement AFTER it has been absorped by the gut? (Duh! When is it measureable in the blood?)
I have had inappropriately normal to low/normal PTH levels. So it is apparently NOT a parathyroid issue. The doctor says not to worry....just take the Vitamin D.

Increased calcium supports normal cholesterol levels. Mine are HIGH 252 (<200) and LDL is also high140 (<100)

Something is causing the Calcium to do the opposite of what it should be doing. Should it be investigated and COULD it be causing my horrible hip pain (xrays negative)?

[Mark Lupo, M.D.]

Tough case - not straight forward for diagnosis.  The PTH is usually >30 in primary hyperparathyroidism, but could be as low as 20 -- which would be inappropriately normal in the face of high calcium.  Primary Hyperparathyroidism causes low 25-OH-D, but on the other hand low 25-OH-D causes Secondary Hyperparathyroid (in these cases, the calcium levels should be lower though).

Urine calcium testing would help exclude the unlikely diagnosis of familial hypocalciuric hypercalcemia (FHH).  Usually there would be family members with high calcium.  

Non-parathyroid hypercalcemia classically has PTH levels 11 consistently.

[sophie50]

Thank you so much for your reply.  I have had a 24 hour urine calcium test done about 6 months ago. The result was 258mg/24hr (100-300).  Total volume 3000ml  Yes!  I seem to have to go a lot (I get up every night)!  I believe this rules out FHH?

Why is it so difficult to get my doctor to agree to retest the calcium levels?  I have good insurance but I have to pay to get tested myself as the doctor will not order the test. I should be having the Vitamin D level tested this week as I have been taking 50,000IU twice weekly for several months now. On the twice weekly regimen, I managed to get the levels up to 45 but as soon as I went to 2000IU daily the level fell back to 24 and then 20.

[sophie50]

I have now had two more calcium tests come back high 10.9 and 11.2.  The PTH was normal at 20.6.  Should I still be focusing on the parathyroid?  I am now being sent for a whole body TC-MDP scan.  

[ereid]

A related discussion, parathyroid was started.