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Hello from accross the pond

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Hello from accross the pond

Post by NancyMi on Tue Apr 29, 2014 8:42 pm

Hi to all of you that I knew from the original forum.  

Just wanted to say that my name is Nancy and I live in the states.  

I have had parathyroid symptoms, as far as I can tell, since 2009.   In Dec of 2012 I had surgery.  The surgeon told me that he removed 3 1/2 glands and I was taken aback.  I prepared myself for a calcium crash but that never happened.   A month after surgery the PTH was in the high 70's. 

Anyway I had a lump, for a lack of better words, in my neck before the surgery.  No one has wanted to comment on it. 

I have full blown osteoporosis, insomnia and you all know many of the other symptoms. If I did not feel sick I would not pursue this but I feel very bad and know that this is a serious and dangerous disease.   

Still trying to get help.

So glad you have established this forum and so glad to see everyone here, Tigerlily, Amanda, Audrey,  and Jasmine  Smile   We have a great group.

Nancy

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Re: Hello from accross the pond

Post by Lucycatnaps on Tue Apr 29, 2014 9:12 pm

Hi Nancy and hello,
     I just wanted to say hello as I wasn't a member of the old forum, I am at the beginning of my journey to try and get this thing sorted.  I  haven't felt well or right for several years, just feel like I need my spark plugs retuned, my get up and go got up and went.  I found out this January that my calcium and PTH were raised and am now eaiting to see an endo.  I really can empathise with the osteoporosis as my mum has it severely.  She has had several fractures in her spine and lost a lot of her height.  I see first hand what it can do and she is a real trooper and she copes really well.  I too have a lump on my neck which they say is a reactive lymph node but I am not convinced, it has been up since last October and no-one really seems to know what it is.  It may well be connected to my salivary gland problem which they tried to resolve a few weeks ago but I think it has not improved it at all.  I wish it was an easier condition to diagnose and be treated for as most people seem to have such a struggle to get surgery and even then it can fail.  Hope you are doing ok today.
Sue
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Re: Hello from accross the pond

Post by Jasmine2 on Tue Apr 29, 2014 9:38 pm

So good to have you back with us, Nancy, but I'm so sorry that you are still suffering with seemingly no end in sight yet.  You have had such a struggle with this wretched disease,  but we just have to keep putting one foot in front of the other and keep going.  Don't give up the fight Nancy, and we're all here right behind you!

Jasmine x
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Re: Hello from accross the pond

Post by NancyMi on Wed Apr 30, 2014 12:06 am

Thank you Jasmine,
         How are you feeling?   I know you went to Tampa.  I need to update my self on your posts.  

So good to hear from you.

Nancy

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Re: Hello from accross the pond

Post by NancyMi on Wed Apr 30, 2014 12:10 am

Lucy,
     I have heard about a salivary gland problem.  Have you had any stones in the gland?   The father of someone I work with recently "passed" a stone right out of the salivary gland or that is what the family thinks.  A hard stone actually came out into his mouth. 
    I told the woman I work with it needs to be sent to a lab for analysis.  I asked if he had had kidney stones and she said yes.  I told her he could have parathyroid disease.
     I hope you get a diagnosis and I agree this disease can cause so much damage in our bodies.      Nancy

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Re: Hello from accross the pond

Post by Jasmine2 on Wed Apr 30, 2014 3:07 pm

Nancy, yes I did go to Tampa, Dr Norman performed my surgery on February 18th and he removed a 2.5cm tumour producing 974 units of PT hormone (normal is 30-80).  I was ecstatic and for the first week after surgery began to feel really well. However, my symptoms all started to return soon after and three separate post op bloods have shown my Ca and PTH to be high still, in fact my Ca was 2.92 (11.68 I believe).  Last week my endo confirmed that I STILL have PHPT!   I am seeing another surgeon here in the UK tomorrow and he is in touch with Dr Norman, who told me not to worry, they would figure it out.  I certainly hope they do because I am so done with all this ....

Jasmine x
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Re: Hello from accross the pond

Post by Tigerlily on Wed Apr 30, 2014 8:33 pm

Nancy

So good to see you've reached us on the new forum! There are a lot of really interesting threads developing here that might be of use to you, and the reference section is growing daily.

We are all here for you, Nancy, and will love to keep hearing from you when you feel up to posting. I know it's difficult to summon up the energy quite often and we've all had a little hide in a dark corner recently from time to time. I have to lie down in a darkened room sometimes for 12-18 hours!

Keep us posted on how things are going for you - even when you don't feel at all positive - and someone will reply and hopefully be able to give you a 'lift'.

Love from Tigerlily xx

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Re: Hello from accross the pond

Post by Meggy on Thu May 01, 2014 7:57 pm

Hello Nancy, I read your posts on the old site (before I realised it had moved - kept wondering why no one approved my registration), nice to see you on here. I'm fairly new. Dodgy calcium in January, doctor referred me to consultant after my PTH was wrong (don't ask levels, I stupidly didn't ask!) Consultant said I'll probably need surgery. More routine bloods showed low cortisol so just had a gut hormone test and short Syncathen Test today. Had my bone scans yesterday with a gorgeous chap, so when I got a very apologetic phonecall to say he'd forgotten to do my arm and could I go back, I wasn't that upset:-) Just a matter of wait and see what they show. My symptoms initially were just palpitations as I'd put the stress, confusion, forgetfulness, depression, arm pain... down to the ageing process. Amazing what a difference a diagnosis makes, I am so much more aware of the way I'm feeling and I had the courage to tell my manager how much I was struggling to cope at present. She had been fabulous and in a well I start my new rota which will have a huge impact.

All in all I have been incredibly lucky so far (apart from having this bloody thing of course) but having a diagnosis and knowing that I am not going mad is such a relief. So I'm really sorry Nancy that you are still having such dreadful symptoms. I do hope it gets sorted out for you soon.

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Re: Hello from accross the pond

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