Patient access & Parathyroid Hormone low? - Thyroid UK

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Patient access & Parathyroid Hormone low?

Suesews profile image

Hi all, I have just got patient access to my records from the GP, but the only records I can see are blood tests and a summary of visits which only go back to 2007. However, I am somewhat perturbed about some of my blood test results. My calcium levels have been consistently below the range since 2007, my Vit D has not been tested until July this year and more importantly my Parathyroid hormone back in 2014 came back 'red flagged' at 0.3 range (1.3 - 6.8). Now considering I had a parathyroid gland removed at the same time as my TT, have been taking Alphacacidol ever since, and have complained a number of times over the years about tingling, spasms, pins & needles etc, why has nobody has picked up on this? and why has this not been monitored over the years?

By the way, I could only see the parathyroid result when I exported the file to my laptop! It is not visible online!!

So, not sure what to do about this at the moment. With lots of help and advice from the lovely people here I am now on a regime of additional Vit D and other supplements but I am not taking any calcium supplements.

Does anybody have any suggestions as to what I should do at this moment about this? I have been to a number of parathyroid websites and my symptoms are consistent with low calcium. Should I consider taking additional calcium or should I go back to the GP?

Thank you.

5 Replies

Hi Sue, you probably shouldn't take much D (D3) without also taking K2 which is a cofactor of D and helps your dietary calcium get to the right place. Consider magnesium too. I don't know about parathyroid though. Good luck!

Suesews profile image
Suesews in reply to angelaat27

Hi angelaat27, Thanks. I am taking K2 and magnesium supplements. I am just a bit pee'd off about it all!

Margo profile image
Margo in reply to Suesews

Did you get anywhere with your parathyroid problems, I have the same?

Suesews profile image
Suesews in reply to Margo

I order to get my gp to accept that I have hypoparathyroidism I organised a private appointment with a specialist who confirmed it. He then wrote to my gp with instructions what to do. At my subsequent insistence I am now on 2.5 mcg of alphacalcidol per day. I now realise that some of my symptoms have been both down to low calcium and low thyroid. If I am under any slight stress during the day, and this can be even the stress of doing nice things, then I can get slight pins and needles in feet, hands or around the mouth. I will then have a milky drink or some sort. I make sure that I have calcium with a least 2 meals a day if not 3. I am not keen on taking calcium tablets but I do carry some around with me in case I need it whilst I am out. Hope this helps?

Margo profile image
Margo in reply to Suesews

That's staggering that it wasn't picked up after your op'.

I was sent home after my thyroid removal with no mention of parathyroid/calcium. Later that evening I felt very ill, rang the hospital but no reply, in the meantime the hospital was ringing me as they had seen my blood calcium results. I didn't pick up the phone as the number was withheld, and nobody had the sense to leave a message on the answer-phone to tell me to get back to the hospital immediately. In the end my boyfriend drove me up, and I was put immediately on a calcium drip for the night. Unbelievable incompetence!

Although I take 2 x Alfa-calcidol my bloods come back at the same level as you, but I don't have any tingling. Now I am wondering along with the low thyroid, if it is the parathyroids also causing me a problem. So hard to manage both problems when we have to self medicate and keep an eye on ourselves.

Thanks for your response.

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