High PTH in UK

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Birdman
Posts: 47
Joined: Sun Jun 14, 2015 1:12 pm

High PTH in UK

Post by Birdman »

I am concerned about my PTH. It goes up and down on blood tests, but this time it is the highest ever.
My bloods were calcium 2.43; phosphate 1.63; PTH 107.3.
My consultant has said in the past that readings of consistently over 80 will result in gland removal.
Is this a given in the UK, or are there drugs that will bring the PTH down.
Any knowledge about this will be very gratefully received.
Thank you.
wagolynn
Posts: 1268
Joined: Thu May 23, 2013 2:49 pm

Re: High PTH in UK

Post by wagolynn »

You may find this helpful :http://www.gpnotebook.co.uk/simplepage. ... 1632871479

I have not come across anyone with kidney problems who has had the gland removed, my own PTH levels have always been over 100.
Birdman
Posts: 47
Joined: Sun Jun 14, 2015 1:12 pm

Re: High PTH in UK

Post by Birdman »

wagolynn wrote:You may find this helpful :http://www.gpnotebook.co.uk/simplepage. ... 1632871479

I have not come across anyone with kidney problems who has had the gland removed, my own PTH levels have always been over 100.
Thank you Wagolynn.

I have just realised there are several common measures of PTH (ng/l, mg/l, pmol/l), and Patient View doesn't say which mine is! So unfortunately I don't know whether your figure of over 100 equates to mine at all. If it did, I would be very reassured I can tell you. I do know however that mine has risen gradually from 36.9 to 107.3 in 2 years.

As to gland removal, I thought it was common. It is called a parathyroidectomy. There are several people in my unit who have had parathyroid glands removed because of high PTH level. One patient has had 3 out of 4 removed. I wondered if there were drugs that would do the job instead, but I am guessing they would probably be very expensive which could influence whether they are prescribed here in the UK.

Thanks again.
igor1974
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Location: United Kingdom
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Re: High PTH in UK

Post by igor1974 »

I take a medication called Cinacalcet to lower my PTH. It seems to be working well for me at the moment.
igor1974

transplanted 1974
APD February 2018
Birdman
Posts: 47
Joined: Sun Jun 14, 2015 1:12 pm

Re: High PTH in UK

Post by Birdman »

igor1974 wrote:I take a medication called Cinacalcet to lower my PTH. It seems to be working well for me at the moment.
Thanks for that. I will ask when I next see my consultant.
per156
Posts: 86
Joined: Mon Nov 21, 2011 7:06 pm

Re: High PTH in UK

Post by per156 »

Hi !

There is an injection version of cinacalcet called Parsabiv (etelcalcetide) suitable for hemodialysis patients. This might give you less side effects than with cinacalcet.

best regards
Per
Birdman
Posts: 47
Joined: Sun Jun 14, 2015 1:12 pm

Re: High PTH in UK

Post by Birdman »

per156 wrote:Hi !

There is an injection version of cinacalcet called Parsabiv (etelcalcetide) suitable for hemodialysis patients. This might give you less side effects than with cinacalcet.

best regards
Per
Thank you very much Per156. I will certainly ask about the injection as well.

I am extremely grateful for everyone's experience of all matters renal.
per156
Posts: 86
Joined: Mon Nov 21, 2011 7:06 pm

Re: High PTH in UK

Post by per156 »

You´re welcome Birdman.
It seems like Parsabiv is accepted by the NHS in England and Wales but there are objections from a medical organisation in Scotland.
However it ´s surprising that your consultant didn´t put you on Mimpara (cinacalcet) when PTH started to creep up from the 35-level
Please keep us informed about how these things work out for you !

Best regards
Per
Birdman
Posts: 47
Joined: Sun Jun 14, 2015 1:12 pm

Re: High PTH in UK

Post by Birdman »

Thanks to everyone for their responses.

I saw my consultant yesterday. My PTH level is still increasing, as is the blood test calcium reading. Renal bone disease is a distinct possibility unless something is done, so I am going having my parathyroid glands removed. Obviously no date yet, but I am rather relieved now I know what is going to happen.
wagolynn
Posts: 1268
Joined: Thu May 23, 2013 2:49 pm

Re: High PTH in UK

Post by wagolynn »

Best wishes.
per156
Posts: 86
Joined: Mon Nov 21, 2011 7:06 pm

Re: High PTH in UK

Post by per156 »

Hope all goes well with the procedure !

Per
mabellester
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Joined: Sun May 06, 2018 10:49 pm

Re: High PTH in UK

Post by mabellester »

I heard that all patients who suffer from parathyroid disease have calcium levels and PTH levels that frequently go up and down. I don't think that a medicine would be much helpful in your case.
JMan
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Re: High PTH in UK

Post by JMan »

I had a parathroidectomy many moons ago. My calcium was unstable and at dangerous levels. I've not had major consequences since and bone density and Calcium etc is monitored regularly...
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