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High PTH

PostPosted: Tue Nov 01, 2016 6:46 pm
by lizzyie
I have had a high PTH level since my second transplant. I have been taking alpha calcidol twice a week and have now been told that it has stopped working, my calcium levels are high and I may need an operation to remove my parathyroid glands.

I am going for an ultrasound scan next week.....has anyone had theirs removed? Also the consultant hasn't tried any other medication to try and lower it, any information about parathyroid would be appreciated, thanks
Liz

Re: High PTH

PostPosted: Thu Nov 03, 2016 1:56 am
by sporti
Hi Lizzyie

Have they tried Sensipar? Called something else in U.K. Cincalet or something like that. Mine was high before transplant but now being on Sensipar has halved my PTH numbers but not normal. Calcium levels high level of normal. Will follow how you get on.

Re: High PTH

PostPosted: Thu Nov 03, 2016 9:21 am
by lizzyie
Hi Sporti, thanks for your reply,
No they haven't tried any other medication except for alphacalcidol which I think is a form of vitamin D.
I will ask about Cincalet and let you know.

Re: High PTH

PostPosted: Thu Nov 03, 2016 12:11 pm
by sporti
Hi Lizzyie

I'm really surprised they haven't put you on this medication. It's pretty standard in U.K. As well as USA. Far better to see how this drug works for you than an operation. Hope you get answers. Where do you live? Sheila

Re: High PTH

PostPosted: Tue Nov 15, 2016 7:42 pm
by lizzyie
Hi Sheila

Thanks for your reply and sorry for not replying earlier.... I went for the ultrasound today. It was very quick and I was told they couldn't see the glands at all, none of them! I asked if that was a good thing but they said not really and I would need a nuclear medicine scan to locate them.
I will have to ask more at the transplant clinic, up until now they have just told me every 3 monnths (for 7 years!) that my calcium is a bit high and so is my PTH (I think around 270) then last visit they told me to stop taking the alphacalcidol and I may need an operation to remove my parathyroid glands.
Now I just have to wait for an appointment for another scan, they said it would be fairly soon. I feel a bit worried about it all but think it's best to wait and see what the next scan reveals.

Thank you for your replies and I will keep you up to date
Liz