just had my wife's second parathyroidectomy cancelled due to bed shortages in Morriston hospital. There seems to be no end to this and my wife is getting worse (another vertebrae gone and constant increase pain throughout the body, especially the legs and feet).
I can only suggest that you ask the hospital to put her on Cinacalcet - that's how they get over their queeing problem in Holland. In the UK it can only be prescribed by hospitals - the alternative is to pay for them yourself and they are really expensive.
What is Cinacalcet?
Cinacalcet is a drug that causes the parathyroid glands to produce less parathyroid hormone with the consequence that calcium levels in the blood are reduced. It does not cure the disease - the tumour will keep on growing. It's given to patients in the UK who have secondary hyperparathyroidism that has been caused by major renal failure. There's quite a bit about it on Wikipedia.
Thanks Alan
How is the diagnosis of secondary hyperpaathyroidism is made?
Regards
Jean
THanks Alan
How is the diagnosis of secondary hyperparathyroidism made?
Regards
Jean
Most endocrinologists in the UK say it's caused by low Vitamin D. Dr Norman, on his website, says this is nonsense and you should look at it to understand why. Dr Norman says the only cause of secondary hyperparathyroidism is through major renal failure. He should know, his clinic does over 3,000 parathyroidectomies a year.
Alan
I was diagnosed with sec hyperparathyroidism in 2009. I have not got major or even minor renal fialure.
Where is this clinic? Is it private? How much do they charge.
It is different here in the UK.
Dear Alan
I am really worried about this. Why didn't th drs do somthing about me when it was diagnosed in 2009?
I feel gutted.
Kind regards
Jean
Google "Dr Norman Florida parathyroid" and you'll get to his web site. All my knowledge comes from this site. According to Dr Norman most Doctors in the World do not fully understand hypeparathyroidism. My wife had her first parathyroidectomy over 3 years ago. It's only because my wife had her calcium and PTH levels checked privately that we knew she had at least one more gland with a problem. Everything he says about hyperparathyroidism, as far as my wife is concerned, has been proved to be correct. I would not trust any UK GP, endocrinologist or surgeon regarding this disease.
To add insult to injury I have just been told they cannot operate as the delay has exasperated problems with the liver and clotting problems. Taken off the list (only been on it eleven months) until the liver problem is sorted which is another department and a different specialist
Have you asked for her to be put on Cinacalcet?
Never got the chance but seeing the Liver specialist tomorrow and will bring it up then, though I suspect they will just refer that question to the Endrocrinologist.
I have to say I don't blame you although I think Mr Palazzo is okay and a couple of others but another friend I have met in person on the FB group actually had a top surgeon who removed her lympth nodes by mistake!!!!! She had to go to Tampa and they managed to remove one bad gland but missed another. She is in a real state as you can imagine with scar tissue and the bodged up op but we are all praying that Mr Palazzo will be able to sort her out early next month. What a damned shame that the idiot that your wife had for the first operation didnt check all four glands out whilst he was operating. That said, one of the girls on the group has found to have a para gland in her chest which is most unusual and so was not picked up.
It now seems my wife,s liver has failed. Haven't heard of this as a side effect of hyperparathyroidism problem. She is being put forward for a liver transplant
Dear Phil,
I have been wondering how your wife was getting on, I am so very sorry to hear this. I am not experienced long enough with this wretched hpt disease but I do believe it can affect the liver. I truly hope she will be okay and pull through this. Please keep us informed how she is. Take care of yourself as well. Elaine x
MY WIFE IS NOW DEAD
My wife has died
Oh Phil, that is the most saddest news ever. Some of us have been really concerned and thank you so much for taking the trouble to write here to let us know. My deepest condolences. I really don't know what to say to you, you must be feeling so many emotions including anger. Please take care of yourself and know that you did everything you possibly could for your wife.
With love, Elaine
Phil, like Elaine I can't think of sadder news. Words can't express what needs to be expressed at these times. Our best wishes to you. Alan.