Following the lovely collection of wee in a pot and blood tests I returned to see my surgeon to get the results. As my PTH had slowly been rising over the past few years I was expecting my calcium levels in my urine to be high but this was not the case.
Instead I learnt that my Vitamin D level is very low, in fact deficient, and that this may be affecting my true calcium level. Deficient enough to mean I may be doing harm to my bones and that it needs raising dramatically.
So not immediate surgery for now just lots of Vitamin D capsules!
Em,
ReplyDeleteFantastic news about no surgery.... for time being! Nick's waiting to see Mr L; scans in Feb and April show a parathyroid adenoma, but like you Ca is only just above normal. He's now off Ca supplements and has bloods tomorrow. Although levels of Ca and PTH aren't sky high like before he seems to have every symptom under the sun and getting worse each week. So we're hoping for an op asap. Clare xxx
Hi Emily,
ReplyDeleteI also have MEN I, diagnosed in 2007. I have had one parathyroid surgery and need another. I was told by my Parathyroid doc that vit D masks the true calcium level. I had my first surgery with 11.8 calcium levels. My doc believed they were more like the 13-14 range because of my symptoms and the size of the adenoma/gland (16x normal.) I was on 2,000IU D3 daily at that time-I was also severely vit D deficient (diagnosed in 2005.) I had developed osteomalacia, osteopenia, and osteoporosis. I was 27 at the time.
I just want to caution you on waiting for surgery and to make sure you have regular monitoring. I know how great it is not to need surgery at this time (I am currently prioritizing surgeries), but just want to let you know how the vit D masked my calcium levels.
Take care. I appreciate you sharing your story and blog. Hope you and your Mom are doing well.