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Post by rosa1 on Fri Aug 01, 2014 12:00 pm

Hi Everyone,

Thank you for setting up the new website, it has been so positive for me to read that there are so many others going through the same things.

I thought all the symptoms I was experiencing was down to my Chron's disease and anaemia, I now know otherwise.

I had a blood test after seeing a GP last September  I had elevated calcium 2.84 and PTH 112 apparently another GP at the practice was notified 12 years ago I had raised calcium  it was only when I went to see the Endo she informed me that the GP Practice knew all those years ago she was shocked I didn't know. Luckily she put me on her surgical list right away and I am due for Parathyroid surgery next week

I  have osteoporosis T score 2.9  Z score 2.5 which I must confess shocked me more than the parathyroid problem as there is a family history of this awful disease.

I will  post again next week to let you  know how things are going.

Best wishes to you all Very Happy 

Rosa

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Post by Hadleigh on Fri Aug 01, 2014 12:15 pm

Hi Rosa

Welcome to the forum, we have a good mix of people at various stages of the pth fiasco so lots of experience between us although we are still learning new things all the time.

Whereabouts are you ? we like to hear positive or otherwise info about hospitals and surgeons so we can recommend or not to others.

Sounds like you have a switched on Endo which is half the battle.

Wishing you lots of luck with the surgery, be sure to keep us posted on how things are going as any and all info and experiences are really helpful to us.

Nelly
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Post by rosa1 on Fri Aug 01, 2014 12:54 pm

Hi Hadleigh,

Thank you for your comments and setting up the forum.
I  am based in Manchester and my Endo is Dr T Kearney.

The pth journey doesn't end with surgery, and I hope any information I post will help in the battle  against ' Groans/Moans/Bones' quote from my GP.

Kind Regards
Rosa

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Post by Amanda Lynne on Fri Aug 01, 2014 4:40 pm

Hi Rosa
I'm so glad you have an Endo who knows what they are doing and with blood results like yours they can't dispute you have PTH disease. How shocking you had raised calcium all those years it can't have helped the osteoporosis.
Good luck with your journey, keep us informed how it all goes.
Amanda xxxx
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Post by mel123 on Fri Aug 01, 2014 6:05 pm

Welcome Rosa, 

Good luck with the surgery next week.

I would be interested to know your symptoms as I went to my GP in January with various symptoms which turned out to be ulcerated colitis and HPT.  I have found it hard to distinguish which symptoms belong to what.  

Mel x

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Post by Kathi209 on Sat Aug 02, 2014 4:37 am

Welcome Rosa

My son has UC I find it interesting that you  both also have phpt. I know that chron's and colitis are autoimmune. I ask my endo if phpt could be a AI disease, he told me no, but I wonder if he might be wrong. It seems that no one knows what cause's it. Rosa and Mel I am sorry you have para problems on top of your other health issues.

Rosa you seem to have classic hyperparathyroid, just by your labs, I am glad your on the surgery list. HyperP should be a easier fix then UC or Chrons. Keep us post.   Very Happy   Kathi

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Post by Hadleigh on Sat Aug 02, 2014 8:13 am

I also have UC and Graves disease which are both autoimmune diseases so maybe there is an autoimmune connection.

Nelly
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Post by Amanda Lynne on Sat Aug 02, 2014 8:53 am

When I had my appendix removed 18 years ago the problem was not with the appendix but vasculitis which is now considered an autoimmune disease linked to Lupus etc.
The markers for this subsided after about 3 months but I wonder if this has any connection with PTH disease as from then on I have felt unwell on and off, not anything I could define until more recently.
Amanda xxxx
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Post by Brigitte0 on Sat Aug 02, 2014 8:59 am

Hi Rosa and welcome 

Although it's shocking that your raised calcium was never pursued 12 years ago, it's fantastic that your surgery is so close and I hope that you'll continue to visit the forum and let us know how you're getting on and how the surgery went. I was referred to the surgeon in late May and it was supposed to happen within 3 months, but no news yet. 

I'm sorry you have other health problems on top of HPT, but there seem to be a lot of us who have other medical conditions as well as HPT. 

Brigitte x
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Post by Hadleigh on Sat Aug 02, 2014 9:18 am

Brigitte you may have to keep chasing them for an appt. I saw my surgeon 3rd March and he said 3-4 months to surgery. Target waiting time for Southmead is 18 weeks. Well i called surgical bookings this week and they couldn't give me a date till 18th Sept and that only happened because i pestered them and it's only provisional so will most likely not happen. So much for 18 weeks, more like 6 months !!

Sorry i have hyjacked the post.

Nelly
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Post by Little Audrey on Sat Aug 02, 2014 11:15 am

Hi Rosa, welcome to our forum! We are very happy to have you aboard, and I think you'll be very happy you found us all.  Smile  There is a great group of people on here who are more than willing to listen and help whenever they are able.

I am so glad you were able to be scheduled for surgery so quickly now, but I wonder too why this was not brought to light 12 years ago for you. What a shame! Your bones would be in much better shape now had they helped you back then! It is so sad that some have to wait so long for help. Keep us posted. Can't wait to hear all about the surgery!

Brigitte, that is awful that you are having to wait around like you are for your surgery. Once you're diagnosed, there should be no reason for the surgeons to stall around. That is also a shame! I wonder if the doctors and surgeons themselves would be happy waiting for months for surgery if it were they who were suffering!

Again, welcome Rosa!

Audrey

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Post by Tigerlily on Sat Aug 02, 2014 6:14 pm

Welcome Rosa - glad to have you here but sorry to hear you had to wait 12 years for a definite diagnosis.

Do keep us posted on the surgery when you are able, and let us know about your recovery too - the bad as well as the good - but hope it will be just good for you!

Love from Tigerlily xx

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Post by NancyMi on Mon Sep 08, 2014 2:24 am

Rosa,  
   How ridiculous that no one ever informed you that your calcium was elevated. 
Just wanted to say that I have had small bowel problems for years and went on the gluten free diet 20 years ago. 
    Being gluten free has been one of the best things I ever did.   It was difficult back then though because there were many products available.  I think eating minimally processed fruits, vegetables and meats is the best way to go anyway.

     Someone from a celiac message board said that when she went to a conference a few years ago that the speaker, a physician, said that all Crohns is celiac.  I don't know if this is true or not but a researcher by the name of Alessio Fasano believes that celiac may be as frequent as 3-5% of the population.  That's a lot of people.

Nancy

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