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Insidious hyperparathyroidism

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Insidious hyperparathyroidism

Post by NancyMi on Sun Jun 01, 2014 11:09 pm

I just found this today on the facebook board.

Just wanted to post it because I think it may apply to many of us.



http://www.medscape.com/viewarticle/753880

I hope this links correctly.

Nancy

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Re: Insidious hyperparathyroidism

Post by Jasmine2 on Mon Jun 02, 2014 8:26 am

Thanks Nancy, good to hear from you.  I saw this too - a very interesting read!

Jasmine x
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Re: Insidious hyperparathyroidism

Post by Tigerlily on Mon Jun 02, 2014 4:50 pm

Hi Nancy

This sounds good to me!
Thanks again for your investigation work!
Gonna have a nice cup of tea and read it all now.

Love from Tigerlily xx

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Re: Insidious hyperparathyroidism

Post by NancyMi on Tue Jun 03, 2014 2:52 am

Hi Maureen,
    Did it show up?  

This article points out to me how dangerous this condition is.  Also I think Amanda commented over a year ago that it was the elevated PTH that might be the real culprit.  I had thought the same thing.  It seems an elevated calcium catches a practitioners attention more easily than an elevated PTH. 

Will you be having a dexa in the near future?

Nancy

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Re: Insidious hyperparathyroidism

Post by Tigerlily on Tue Jun 03, 2014 9:26 am

Hi Nancy

I'm still waiting for the US scan of the side of my face, but I did go yesterday for X-rays of the same arm that has sub-periosteal bone erosion in the fingers and should get the results next week. If the pain in the same elbow and forearm is in any way connected with HPT and has been left to develop since HPT was first diagnosed by my GP (who has now left the practice) 15 months ago, I shall be very upset.  bom 

As I understand it, HPT should be diagnosable from the biochemistry these days, with the advent of improved PTH assay techniques, and people shouldn't be presenting with bone defects now, which were the first sign of an HPT problem many years ago. And if it hadn't been for my current GP's alert rheumatologist colleague (who has diagnosed normocalcemic HPT and given a good description of it in his letter - quoted in my other post), I still wouldn't have a diagnosis.

Sorry, Nancy, I didn't mean that to sound harsh - getting a bit iffy about it all now!  Twisted Evil 

I agree with you - the calcium is the thing the endo's take notice of, and they don't seem at all interested in PTH. Mine has risen to 12.7 (US:120) now. The local endo wrote and said that he agreed my PTH was rising but that it would fall back again, he was sure, and wasn't it good that my calcium had now settled at 2.49 !!

I haven't heard anything about the "urgent" ultrasound since I saw my GP yesterday morning. So I'm off now to try and put some heat under it and get it done this week, instead of 6 weeks time. I expect that's what they call urgent in the NHS!

Have you had any more news about your neck thingy, Nancy?

Love from Tigerlily xx

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Re: Insidious hyperparathyroidism

Post by Amanda Lynne on Tue Jun 03, 2014 12:47 pm

Tigerlily I'm not surprised that you are getting iffy. I don't blame you, I'd stick a blow torch under GP's chair that'd put the heat on him.
Good luck with getting US sorted.
Nancy I don't remember saying about PTH but I don't remember much ATM. Apart from twice mine has always been in range even before first op. 
Any news on lump? 
Love Amanda xxxx
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Re: Insidious hyperparathyroidism

Post by Tigerlily on Tue Jun 03, 2014 1:09 pm

Cheers, Amanda - I'm just giving them today chase about a bit for the urgent NHS US, but if it's not going to happen next week (because it sure won't happen this week, I shouldn't think) I'll find someone to do it privately.

I wouldn't be so pushy about this if the 3 medics I have already asked to look at it recently hadn't said there's nothing there. Even my husband can't see the jaw swelling, but two girlfriends did. And one even said I haven't looked right for some time - bless her!!

Love Tigerlily xx

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Re: Insidious hyperparathyroidism

Post by Amanda Lynne on Tue Jun 03, 2014 1:50 pm

Yes bless her and poor you. It's disgusting hat you have to resort to paying for it when the NHS should be doing it for you. Good luck with it.
Love Amanda xxxx
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Re: Insidious hyperparathyroidism

Post by Tigerlily on Tue Jun 03, 2014 3:18 pm

Thanks, Amanda - just having a bit of a pity party in the rain here today! XX

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Re: Insidious hyperparathyroidism

Post by lozza on Tue Jun 03, 2014 4:17 pm

Hi Tigerlily,

I waited around 5 weeks for my ultrasound- but they had booked me for the wrong scan- which took a while to sort out. When I did get letter through, it was for the following week- so look out for the post.

I am sure my postman must think I am a right " nutter" as I wait for post to be delivered

best wishes

Lozza Very Happy

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Re: Insidious hyperparathyroidism

Post by Tigerlily on Tue Jun 03, 2014 5:30 pm

Thanks, Lozza - I've already had notification of my next appointment there in August!
They're very quick and efficient at sending those out!

Can I join the postman-hugging club as well! They always get a warm welcome from me too! But not on Tuesdays when it's only ever the Radio Times - it falls so heavy on the mat and gets me all excited!

Small pleasures, eh?!

Love Tigerlily xx

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Re: Insidious hyperparathyroidism

Post by NancyMi on Fri Jun 06, 2014 2:51 am

Tigerlily,
    I 'll bet your friends are perceptive and do see the swelling. 
And if you do have some bone erosion isn't this so wrong that you have had to wait until now to finally get a good response.
      It isn't any better over here in my opinion.  I told my sister, I feel like a beggar walking around with a tin cup trying to get help.  With you PTH of 120 I definetly think that is clearly out of range.  
     Going back to what your friends see, a nurse I worked with coulld palpate the "lump" and the size, at least 1  1/2 inches 2 years ago. 
      Ladies I just wanted to tell you that when I went in for the surgical follow up the surgeon told me I did not understand the metric system.  I know what 10 cm is.  It's the size a cervix needs to dilate to in order for a woman to give birth.   The surgeon I had did a wonderful job but I believe he will not contradict what the last surgeon said or did.  I am not really looking for that but it is important to know what was removed.  If it was a p gland, it could mean that I also have a corresponding one on the other side due to something called concordance. 
     I have to accept help on their terms.  At least that  is what I believe.    confused
Tigerlily, so glad to hear things are moving forward.   So glad to hear you have an appointment with Fausto Palazzo.  
      It is just so frustrating to see what so many of us have had to go through to get help.
    Keeping all of you in my thoughts. 
      Nancy

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Re: Insidious hyperparathyroidism

Post by Little Audrey on Fri Jun 06, 2014 1:32 pm

It is so sad to read about how everyone is suffering so badly.  Crying or Very sad  I pray that we all find the help we need to feel well again and VERY soon!!!

Tigerlily, the first time my PTH was tested, it was found to be 112. Calcium at that time was only 9.8. I say ONLY because it eventually rose to 10.7 over the next few years. Nobody thought there was a problem since the calcium was in range at 9.8. Three years later, Dr. Norman realized there WAS a problem all along! I still don't know why the doctors have so much trouble diagnosing this stupid disease! It really isn't that difficult!!

Hang in there everybody!!

Audrey

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Re: Insidious hyperparathyroidism

Post by Tigerlily on Fri Jun 06, 2014 7:48 pm

Nancy and Audrey

Thanks for your support - love you both!!

The Arm X-rays didn't show any bone resorption, but of course it didn't say they had check fro osteitis firbrosa cystica. I'll have to ask them to have another look. They'll love that!!

But the good news is that I have an urgent US of the jaw, thyroid PTH booked now for Wednesday.

Spooky thing happened today - was looking through a rail of clothes in a shop whena  lady appeared beside me and asked me, not very clearly, if I thought an item would be her size. We chatted for a moment (well, she chatted and I tried to understand what she was saying) whilst I tried to decide what was the matter with her. Had she had a stroke and was that why I was having difficulty understanding her? But, no. She had a large swelling on the side of her face and was having problems speaking.

Not feeling so good about it at the moment - but it has given me the impetus I needed to insist that things happen very soon as far as diagnosis/treatment is concerned. As soon as I have had the US the s%$t will be hitting the fan if there is something there that should have been visualised 15 months ago.

Keep calm, Tigerlily, deep breaths.

Love to you both from Tigerlily xx

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