Can You Help Us

[r1gg1n]

My girlfriend had her thyroid removed and during the operation they messed up and took her parathyroid as well. This was 8 years ago. Most of you know the symptoms who are reading this. She needs help is there a transplant available.... Any advice

[helvella Administrator Thyroid UK]

Transplants have been done:

news-medical.net/news/20120...

Rod

[deniD]

Hi I lost 2 during surgery 7 years ago I was giving calcium drip after surgery. Then few fizzy tablets to take for a few days....... I've just this year been diagnosed. With severe vitamin d deficency and low calcium! Taking the vitamin d has brought my calcium back up. Has your lady been vitamin d tested? What symptoms she having?

[Margo in reply to deniD]

Same as deniD, I lost 2 during op' and had tetany and was put on a calcium drip. Take Vit D and seem ok now.

[deniD]

The other glands kick in to make up for those lost so I'm told!

[Apricot]

Have had 3 of the four parathyroids removed. The other one..they couldnt find.

Often Vit D levels are very low....and believe me...feel ****. Supplementation, good diet...holidays in sun...and lots of tlc....bless her..she needs lots of tlc.

Still doing research as to why the Vit D levels are so low....

[jimh111]

If they didn't take all 4 parathyroids out she will probably be OK. Otherwise it's sadly just a case of taking medication. A transplant really isn't an option as she would have to take a great deal of anti-rejection medication which would seriously compromise her immune system. The patient helvella mentioned was already having to take anti-rejection medication for a life-saving kidney transplant.

[helvella Administrator Thyroid UK in reply to jimh111]

However, with the little information we have, we cannot rule out there being an identical twin. I don't know enough about whether transplant from some close relatives can sometimes avoid the need for long-term anti-rejection medication?

For the sake of the original poster's girlfriend, we can certainly hope.

Rod

[Hidden]

I had same problem - the surgeon couldn't find two of the parathyroids as they were engulfed by the goitre. They are tiny - about the size of a grain of rice, so it quite easy for them to be damaged. As others have mentioned I also had calcium by drip post-op. I still take adcal D3 (12+ years later) and that seems to keep the calcium and vit D levels OK. I once tried to stop them and got the side effects of tingling and very sore fingers.

Your girlfriend should have her calcium and vit D levels checked.

Hope you find a doctor that can help.

[deniD]

Funnily enough. After I was discharged I noticed adcal on my repeat prescription form... Only. I knew nothing bout it why it had been added! Neither did gp he couldn't find any notes dpso it was removed!! With hindsight.......... If l knew then what l know now cos boy dud l suffer for years!!! Still not me old self but better now on vit d!

[dibdab]

Transplants have primarily been used at them tme of thyroid surgery, when they transplant into the arm, success is intermittent. Post surgery transplants have I believe been rarer in their success rate.

Is your girlfriend on alfacalcidol or calcitriol?

My surgery to remove the thyroid damaged my parathyroids (although they were left inside), 6 years on and they've not recovered - it's a bit of a roller coaster but there is hope in the future as a new drug which is the replacement of the hormone is being developed.

X

[Clutter in reply to dibdab]

R1gg1n and Dibdab, I think it will take a long time for approvals and availability over here but...

FDA Advisory Committee Recommends Approval of Natpara® for Long-Term Treatment of Hypoparathyroidism...

healthunlocked.com/thyroidu...

[dibdab in reply to Clutter]

Thanks Clutter, FDA approval has been deferred to the new year. There has been a trial in the UK previously and the pharmaceutical company NPS have opened a UK office recently - which is positive.

[wadhamk1]

During total thyriodectomy 1 parathyroid gland was removed and went in the bin. 2 were replanted and 1 was stunned. On supplements for 3 1/2 years no sign of them recovering zero PTH I had nothing to loose feeling desperate electric shocks, tingling pins n needles headaches etc . I tried spiritual healing not reiki in August and in September the glands started working. I noticed the difference my GP ran bloods tests to satisfy himself and prove that they would not be working ..... Guess what they were are and still work perfectly to this day try anything and never give up worked for me