High PTH

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High PTH

Postby lizzyie » Tue Nov 01, 2016 6:46 pm

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
lizzyie
 
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Re: High PTH

Postby sporti » Thu Nov 03, 2016 1:56 am

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.
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Re: High PTH

Postby lizzyie » Thu Nov 03, 2016 9:21 am

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.
lizzyie
 
Posts: 95
Joined: Sun Jan 06, 2008 12:09 am

Re: High PTH

Postby sporti » Thu Nov 03, 2016 12:11 pm

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
sporti
 
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Re: High PTH

Postby lizzyie » Tue Nov 15, 2016 7:42 pm

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
lizzyie
 
Posts: 95
Joined: Sun Jan 06, 2008 12:09 am


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