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Parathyroid & Osteoporosis


#1

I have osteoporosis, and I’m in a discussion forum for that, too. Many of those members have had parathyroid surgery (a malfunctioning parathyroid can contribute to osteoporosis) and they all rave about this web site and the doctors at this facility. If there’s anything you need to know about the parathyroid, I’ll bet you can find it here:
https://www.parathyroid.com/


Hi all. New member
#2

Hi there Manatee,
I also have osteoporosis and it was a struggle to get them to do a DEXA scan last year! I think that website is brillant it is the Norman parathyroid center in Florida? They are the top surgeons in the world and I want to go there but it is the cost involved and the flight. I seem to know more about parathyroid disorders then the specialists here!I have seen a surgeon here and have meet someone who has had the surgery done by him and couldn’t believe it! It has taken ages to get an appointment.Wish Dr Norman was in the UK.Thanks so much. R.


#3

Hello Ruth, sorry for the delay - I haven’t been on the site for a few days. Yes, it’s the Norman parathyroid center. There are quite a few women in the osteoporosis forum who have traveled there to have surgery. One of them lives in Arizona and has created a little network of people who had their surgery at NPC. From what she writes in her posts, it sounds like virtually everyone who went there loved the place and felt that their surgeries were a success.

I had never heard of the parathyroid before and had no idea that it could cause the kinds of problems that it does if it gets out of whack. From what these women say, there aren’t many doctors in the US who understand the parathyroid and many of the women went years without being properly diagnosed.


#4

Hi Anna. Thanks so much for getting back to me. Its interesting isn’t it how many problems having one thing out of whack can cause. I am hoping that when I finally have surgery I will feel better,but I don’t think all my problems will be solved, and you get rid of something for it be replaced by another problem!It is such a delicate area and you need a top surgeon to do it as surgery isn’t without risks.We seem to be even more behind in the UK.I would fly to the USA but am worried about the flight making my vertigo and ear problems worse. Also the cost involved.Have you been tested? R.


#5

Hello Ruth (@oak17),

I wrote to the woman in the osteoporosis group who has created her own parathyroid network of friends. She has two people in her network who are in the UK. She wrote to them and asked about doctors in the UK and here is what she sent me.

One person who lives in London went to a Mr Hardy. Here is a website which mentions Dr. Hardy:

http://www.endocrinesurgeon.co.uk/index.php/prior-to-parathyroid-surgery-what-tests-must-be-performed

The other person went to a Dr. Howe and said, “I would recommend Mr Howe, but he is dragging his heels with me on second surgery.”

That person also recommended a closed group on Facebook, which is called “Hyperparathyroid UK Action4Change” and said that there is a wealth of information there, including information on doctors in the UK. She said that you could apply to join the group, you only have to say what your reason for joining is.

The Facebook link for that group is:


#6

Hi Anna. Much appreciated. I have that website saved to my favourites and regularly have a look.It worries me when they mention ‘second surgery’ as if you go to the parathyroid centre in Florida they say you shouldn’t need another surgery if it is done properly. I tried to get into the closed group but I closed my Facebook account in July and they wouldn’t let me re-join for some reason!Have you been tested?R.


#7

Hello Ruth, I’ve been tested several times, I think and both my PTH and blood calcium levels were always OK. So at least that’s one thing I don’t have to worry about, at least not for now!

You can always create a new Facebook account. I know some people who have used their first name and then used their middle name as their last name for their Facebook account. So for example if your first name is Ruth and your middle name is Ann, you would create an account as “Ruth Ann” as though “Ann” is your last name.


#8

Thanks Anna. I already tried that and locked out of both!Absolutely no idea why! Only wanted it back to go onto the closed group. Typical! Good you have been tested.Most people have never even heard of it.R.


#9

Ruth, that may be because you’re using the same email address (for your new Facebook account) that you used for your old Facebook account. You might have to use a different email address.


#10

Hi Anna. I would have to set up another email address but I don’t really want to. I used my mobile no. for another account with my name in another format but that blocked me too!Hope u r ok. R.