Posted 1/22/2015 10:25 PM (GMT 0)
Hi, I've just been dx with hyperparathyroid diseasea and my score was 99. It was dx by accident as I was in hospital for 6 wks being fed via TPN due to a really bad stricture and they couldn't operate for 5 wks whilst they built me up as was so underweight where I couldn't eat.. I had been having what I now know are symptoms of it for last 18 months especially the joint pain, loss of appetite and exhaustion. However as I have very aggressive Crohn's and also Lupus, arthritis and nerve damage these symptoms were put down to these even though I kept saying it wasn't and that I just didn't feel right. Anyhow, they kept saying when I was in hospital that once they had done the surgery I would be able to put on weight and feel so much better. Due to the short bowel syndrome I need to eat 4000 calories a day, every day. Which is one hell of a struggle when you don't have an appetite. I'm seeing a endocrinologist in April but my worry is that in UK the NHS don't operate until calcium is sky high but saw my GI this week and as i have lost a load of the weight I gained in hospital they are now saying if the surgeons won't remove the parathyroid that is causing the problems I will need to be fed by central line to maintain my weight. The NHS view is that is saves money by not doing the surgery but will then have to spend thousands each month having to make TPN and care for that instead. How short sighted.
I did find a really useful website connected to the Mayo Clinic and it had report from a world renowned endocrinologist and when patients should be operated on, I'm presuming you're in USA, but sorry if that is wrong. I suggest you have a look online at it and print it off and take it when you see your endocrinologist. Not to scare you but left untreated it leads to very serious consequences. Like I said, have a look at the medical websites, helped me a lot as I knew nothing about it and hope it helps.