High PTH in UK

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High PTH in UK

Postby Birdman » Sun Apr 01, 2018 10:05 am

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.
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Re: High PTH in UK

Postby wagolynn » Sun Apr 01, 2018 4:59 pm

You may find this helpful :http://www.gpnotebook.co.uk/simplepage.cfm?ID=x20120702211632871479

I have not come across anyone with kidney problems who has had the gland removed, my own PTH levels have always been over 100.
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Re: High PTH in UK

Postby Birdman » Tue Apr 03, 2018 5:23 am

wagolynn wrote:You may find this helpful :http://www.gpnotebook.co.uk/simplepage.cfm?ID=x20120702211632871479

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.
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Re: High PTH in UK

Postby igor1974 » Tue Apr 03, 2018 6:10 pm

I take a medication called Cinacalcet to lower my PTH. It seems to be working well for me at the moment.
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Re: High PTH in UK

Postby Birdman » Wed Apr 04, 2018 7:42 am

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.
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Re: High PTH in UK

Postby per156 » Wed Apr 04, 2018 6:18 pm

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
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Re: High PTH in UK

Postby Birdman » Sat Apr 07, 2018 4:33 am

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.
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Re: High PTH in UK

Postby per156 » Wed Apr 11, 2018 5:14 pm

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
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Re: High PTH in UK

Postby Birdman » Tue May 01, 2018 5:21 am

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.
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Re: High PTH in UK

Postby wagolynn » Tue May 01, 2018 2:03 pm

Best wishes.
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Re: High PTH in UK

Postby per156 » Tue May 01, 2018 6:54 pm

Hope all goes well with the procedure !

Per
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Re: High PTH in UK

Postby mabellester » Sun May 06, 2018 10:51 pm

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.
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Re: High PTH in UK

Postby JMan » Fri May 18, 2018 4:54 pm

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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