My lab results have started to trickle in and are intriguing. Here is the quick rundown:
My calcium is back up into the 10s after the drop in January – two rounds of tests are back at 10.1, which isn’t crazy high, but it is a heck of a lot higher than the 8.9 and 9.4 I had at the NIH. And my PTH is 19 – not high enough to be diagnostic for sure, but certainly not suppressed. I have been working very hard on my diet this past month – only eating lean proteins and lots of fruits and veggies to try and give my body a shot at absorbing as many nutrients as possible. On the advice of some very wise friends, I have also started taking digestive enzymes at each meal to help the process along. I still have signs of malabsorption, but they aren’t as severe as before and the pain in my URQ has disappeared. So, I think the change in diet and the enzymes are actually helping me absorb nutrients, including calcium. As an added bonus, I have lost 8 pounds too!
My glucagon was suppressed. This seems consistent with my (admittedly far-fetched) theory that I might have a somatostatinoma, as somatostatin suppresses glucagon. And my insulin-like growth factor (IGF-1) also fell by about 25 points. It has been 177 consistently after pituitary surgery. Now it is 153. Not crazy low, but a solid drop which is weird given I am one year post-op. IGF-1 is stimulated by growth hormone, a pituitary hormone that can also be suppressed by somatostatin. However, IGF-1 can also be low because of poor nutrition which has been a concern because of my digestive issues. So both of these results might indicate a problem…but it is still not clear what the problem is.
So, the current plan is to keep testing. I plan to keep up the PTH and calcium testing, once or twice a week, to see if the return of the 10s is a blip or if my calcium stays in the 10s and my PTH starts increasing too. Hopefully this will help me rule a parathyroid adenoma in or out. If the calcium and PTH tests get high enough to be diagnostic, I will use the lab reqs I have from the surgeons and finish their testing and hopefully get cleared for surgery. If not, I need to move on to another explanation for my bone pain and abnormal bone labs. As for the glucagon and IGF-1, I want to try and complete a few more labs that I think will help strengthen the case that somatostatin might be the culprit and, with my stronger case, ask the Wizard for the somatostatin test one more time.
Getting the extra labs tests done, though, will require a little finesse….
a tale of two tumors 