New member - About me

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Welcome to the forum, Gina!     I'm so glad you did join us here.   You will find some very wonderful, understanding people here, who are always happy to listen and help in any way they can.  

It sounds like you've been suffering terribly!    With those labs, and especially since those tumors have been sited,  you really need surgery as soon as possible!   Do you not have surgery scheduled yet?

Yes, it is very normal for doctors to try to treat all of the symptoms of this disease instead of determining what is causing all of the darned symptoms!   My doctors did the same thing with me.   I guess that is much easier for them, but it is pure hell for us!

As far as crying at your appointment, I have broken down many times at my appointments.    When a person suffers as badly as us as long as we do, it is very hard not to fall apart emotionally.

I am very happy your GP had enough sense to check your parathyroid hormone.   Every now and then we find a doctor who will listen and who is genuinely willing to help.

Do you have any appointments scheduled soon?

Again, I am so glad you joined us!     Please keep us posted with your progress. 

Audrey

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Well, it sounds like things are moving along nicely for you now.   That is great to hear!!    It won't be long now til you're on the other side of this dreadful disease!    I am very happy for you!

Audrey

Hi Gina

Welcome! Have you been following our stories on the old forum?  If so, you will have seen that what you have had to endure is very similar to many of us.  In fact, you could almost insert my name for yours and it would be my story too!  Like you, I was back and forth to the GP for years with all my various worsening symptoms which were all attributed to ageing and menopause.  Until one day last year, around this time in fact, I sat in my doctor's surgery and I'd absolutely had enough, I was so tired from not sleeping and being up all through every night drinking and peeing, everything hurt everywhere, and I didn't have the energy to put one foot in front of the other to keep going. The doctor started to get a bit patronising yet again and said he didn't know what more to do for me and I think I must have got a bit stroppy because he got quite stern with me - with that I burst into tears and sobbed! He changed his attitude and softened a little and said I think my dear that you have reached the end of your tether so let's look at everything again.  With that he ordered more tests, including calcium which came back at 2.9, followed that up by checking my PTH which came in at almost off the scale, and he said I think we've got to the root of the problem.  I didn't know whether to laugh or cry really - so happy to finally get a diagnosis but miserable to be stuck with this hideous disease.

As Audrey said Gina, you're among people here who understand and really care about each other so whenever you need help, support, advice or simply just to have a rant, just holler ...... oh and do keep us posted on your progress. They're a good team at Addenbrooke's I'm led to believe ...

Jasmine x

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Hi Gina and welcome.

With those results no wonder you are feeling so bad. Is there no way you can get an Endo appt sooner than June as that is a long time to wait and then another wait to see a surgeon plus another wait for a surgery date, might be worth trying to bring it forward a little or you could be left hanging on for several more months.

Sounds like you have a good GP which is half the battle, mine was and still is useless with this pth stuff, apart from writing the referral letters I have asked for she hasn't been involved ! can't wait to see her after my surgery with proof that I was right !!

So anyway I hope you find the forum helpful, lots of experienced people around to help you with advice and the reference section (which is growing all the time) has some useful websites and info and we will be adding more over time.

Happy chatting

Nelly

Well, a quick summary of my story following diagnosis: I had my first parathyroid surgery last August here in the UK which was unsuccessful and I continued to have persistent primary hyperparathyroidism.  I went to the Norman Parathyroid Centre in Tampa for my second surgery in February this year which was successful and I had a biggish tumour removed which was producing almost 1000 units of PTH. However, so far my calcium and PTH levels haven't yet returned to normal and I'm still having some debilitating symptoms.  I saw the endocrinologist last week for follow up and more bloods and we'll just see how things go from there really when I get those results this week, but I'm cautiously optimistic that all will be well in time.

Jasmine x

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Gina, I love your avatar .....

J

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Hey, I LOVE that too!    Maybe we should consider using that for our forum, if that is ok with Gina.  

Audrey

Hi Gina and welcome too,
I too have not felt well for several years,  I am hypothyroid on medication but was always told my blood levels were fine and that it was all menopausal.  My bloods came back raised calcium and PTH in January and I am waiting to see an endo in mid May.  My levels are nothing like as high as yours but are continuing to give me some horrible symptoms of thirst and panic attacks.  There are some truly lovely caring people here who know exactly how it feels to have this condition.  I can only say how supportive and helpful everyone is and kind.  I do so hope you will be treated sooner rather than later, anyway just saying Hi and Hello
Sue in Lincs

Or if you're a whizz at Paintshop Gina, as you clearly are, maybe you could design one for us?

J

Great idea!!

Isn't it funny how people seem to come to us in life when we need them.    Gina came to us because she felt she needed us, but now maybe she can help in a way that we had not expected.   That would be great if you could do this for us, Gina.  None of us seem to be able to come up with anything.    Please don't feel pressured, but if you're willing, this would be great!

Audrey

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Oh, my gosh, Gina, I think that is a GREAT idea!!!    What does everyone else think?

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.....but now you're OUR mess, Gina .......  

So, over to you Mr and Mrs Admin, if you can use Gina's Paintshop skills?  Designing anything like this is beyond my skills set ......   

Jasmine x

Hi Gina
Welcome to the forum, I am also a second time a rounder like Jasmine and am continuing to fight for a cure. 
Your levels are extremely high and thank goodness you now have a good GP to help you get your diagnosis and surgery. Most of us have had to fight for recognition of our disease and anyone who has a GP who has the knowledge and understanding to recognise hpth disease and get the ball rolling immediately, is in very good hands.
Ask any questions you warn and one of us will usually have an answer, there isn't much about hpth that our combined knowledge can't answer.
Amanda xxxx

Gina Williams wrote:I'd be happy to make one.  If the group is happy with this design, I still have the template so, I can make one in any colour.  I can change the lettering as well.  I could also watermark the image so it would be exclusive to the group. xx

Hi Gina

Welcome and thank you for your offer to design a logo.

The current image in the above header is an edited version of something that I found in an on-line article, but Mrs Admin does not like it.

As you can see in https://hyperparathyroid.forumotion.co.uk/f9-forum-logo-competition-temporary-forum we opened a competition, but do not have any submissions yet.

Edwin (Admin)

Hi Gina,
You really are going through the mill, please take care and try not to overdo it .  My mum has severe osteoporosis so I have seen what it can do,  she has lost over 6 inches in height.
Hugs from Sue