Thank you for taking time to answer questions. I had 3 1/2 parathyroids removed six months ago. A month after surgery my PTH was 42 pg/ml, Vitamin D 25-OH was 38 ng/ml, but I’m confused what my calcium was as there were two results on the same day. One calcium level (in the metabolic panel) was 9.7 mg/dl and the other one that was listed with the PTH was 10.2 mg/dl. This confused me, but I felt better than I had in years so I wasn’t worried. However, it didn’t last long. The bone pain, fatigue and brain fog ( to name a few) returned and consistently have gotten worse. I have been taking calcium with vitamin D and magnesium as instructed after surgery. About 3 weeks ago I stopped taking it because the bone pain has gotten worse and I feared my calcium was high again. I am right back to feeling like I did pre surgery. I’m very disappointed and discouraged. My most recent lab results show that my calcium is 10.2 mg/dl. My vitamin D is 23 ng/ml and PTH is 17 pg/ml. I am 53 years old. What would cause my calcium to still be high and my other numbers to be so low? I’m so confused. I should probably mention I have an identical twin sister who has had a parathyroidectomy as well and still doesn’t feel well either, but she had a one sided surgery. Thank you for your time and I look forward to your response.
.png)
Thanks for writing. Your case is complex, and there are a few separate issues to unpack here.
First, let’s look at your most recent labs. Your calcium is 10.2 mg/dl, which is high for your age. Your PTH level is 17 pg/ml, which is low, in the suppressed range. This is a good sign, indicating that your remaining parathyroid tissue is responding appropriately to the high calcium. We want the parathyroids to make less hormone when the calcium is high. Your Vitamin D level of 23 is on the low end. Overall, these labs do not look like primary hyperparathyroidism, since the PTH is responding appropriately. But they don’t give us a reason for the high calcium.
About the earlier set of labs with the two different calcium levels: this can happen even when the two labs are drawn on the same day. There is always some margin of error for any lab result, for multiple reasons. Usually the levels are close enough to not really make a difference, but levels like yours are frustrating because you don’t know which lab is more accurate. What I do in this situation is just accept the fact that it isn’t clear, and get repeat labs as a kind of tie-breaker.
Why is your calcium still high? It would be very helpful in your case to see what your preoperative labs looked like. Was your calcium level around 10.2 mg/dl prior to surgery? Or was it much higher? How long was your calcium high? Did you have normal calcium levels at some point in the past? What were your PTH levels prior to surgery? If you had a very high calcium and PTH level prior to surgery, but now have a mildly elevated calcium with a low to low-normal PTH, it may be that we are just seeing some normal fluctuations after surgery, which will resolve with time. On the other hand, if your calcium and PTH levels were very similar to what they are now, we have to consider other possibilities: it is possible that this is not primary hyperparathyroidism.
Next, let’s talk about family history.
You mentioned that your sister also had parathyroid surgery. I would want to know what her calcium and PTH levels were before surgery and after surgery. Were they like yours? Has her calcium level stayed in the 9s since her surgery?
It is possible that you are simply not cured of primary hyperparathyroidism. But the PTH of 17 would not be consistent with that. Another possibility is that you have something else causing the high calcium. Given your family history, I’m considering a possible familial hypercalcemia such as FHH. If your sister’s calcium is still in the 10s after surgery, then this is a definite possibility. Typically we see low urine calcium levels with FHH, so I would want to see your 24 hour urine calcium levels. FHH is diagnosed with genetic testing, so that may be necessary also.
Right now, it is not completely clear what is going on in your case, and I think we would need more information before making any definitive diagnosis. Sometimes the lab values just fluctuate in the months after surgery, and take time to settle down into the normal range. I would recheck labs again in a month and see where things are. If your calcium remains high, you will need to consult with someone experienced in parathyroid disease.
