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New to forum... Couldn't join old forum.

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New to forum... Couldn't join old forum.

Post by ste-earl on Fri May 02, 2014 6:06 pm

I'm a British guy living in the US. I really wanted to join the old forum last year but wasn't able to due to the user registration problem it had. Here's my hyperparathyroidism story:

About a year or so ago I started getting various symptoms like stomach trouble, extreme lack of energy, headaches and an occasional rash on my hands. I spent a long time trying to figure out what it could have been, and everything seemed to point towards Celiac disease (A reaction to gluten in your gut, for people who don't know.) So I went on a self-imposed gluten free diet for about 8 weeks. 

I thought I felt better during that time, but I still had some nagging concerns. Eventually I decided to get tested for Celiac disease, and the first thing was to get a full blood test.

My blood test came back fine except for one thing. My blood calcium level was 13.1 mg/dl, which was in the extremely high range. I found that the normal range is supposed to be from 8.5 to 10.5. The doctor noticed this and scheduled a test for my parathyroid hormone levels. That test came back at around 130 for my pth, so it was confirmed that I had hyperparathyroidism and that surgery was needed. (A further test for Celiac disease came back negative)

I first had a sestamibi test, and expected my enlarged gland to show up clearly since my levels were so high. The test unfortunately showed nothing, which was a little disappointing to say the least.

I had no choice but to go through with surgery anyway and just hope the surgeon could find it manually. I had a number of worries before the surgery. What if he couldn't find the overactive gland? What if I have to have an 8 inch scar on my neck from him looking for it? What if I have to have more surgeries costing me thousands of dollars more? I was VERY lucky to have the surgery within the same year as my sestamibi test, saving me almost $2000 on my insurance deductible, but the downside was that I was that the surgery took place on December 31st and I had to stay the night.

Luckily the surgeon found it, right in the first place he looked. I ended up having just a small ~2 inch incision on the front of my neck. My scar is looking much better. I'm off my gluten-free diet, and I'm feeling fine for the most part. I had my blood tested in February and my calcium was down to 9.7. 

The whole episode began when I was in my late 20s, and I'd been very healthy my whole life. Prior to this I'd not been to see a doctor for years. It was kind of a mixture of both bad and good luck in the end.

ste-earl

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Re: New to forum... Couldn't join old forum.

Post by Tigerlily on Fri May 02, 2014 7:59 pm

Hi ste-earl

Thanks so much for posting your PTH story here on the new forum and we are glad you were able to join us at last.

Despite high blood levels, the little blighters often don't show up on scans, so it sounds as though you had an experienced surgeon who was able to locate it successfully. Would you mind posting his name and contact details in your next post as this would be very useful for anyone else in the US looking for a surgeon? Thanks, we'd be really grateful.

Your 9.7 calcium in February sounds about right and may hopefully reduce further as time goes on.

Sorry you had to stay overnight in hospital on New Year's Eve, but I bet you've made up for it with some celebrations since then!

Keep us posted on your progress, hints and tips, and how you feel in yourself going forward, as this helps us as yet undiagnosed people to have some hope, and everyone else to be able to compare their experiences with you.

Best of Wishes to you and we hope you will continue to contribute here when you can,

from Tigerlily.

Tigerlily

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Re: New to forum... Couldn't join old forum.

Post by ste-earl on Fri May 02, 2014 8:19 pm

My wife was by my side the for the whole duration of my stay, so it could have been worse. Smile

I didn't choose my surgeon especially, he just happened to be local to me. Although he did have several decades of surgery experience and had done many parathyroid operations. 

I suppose my advice to others would be to make sure your surgeon has experience in this kind of operation. Although I personally didn't really get to make that choice.

ste-earl

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Re: New to forum... Couldn't join old forum.

Post by Lucycatnaps on Fri May 02, 2014 8:29 pm

Hi ste-earl
It is so heartening to hear that you are recovering well after surgery, long may it continue!  I am waiting to see an endo so just at the beginning of all this malarkey, having bloods done again next week so will see how things are going this time.
Sue
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Re: New to forum... Couldn't join old forum.

Post by ste-earl on Fri May 02, 2014 8:48 pm

@Lucycatnaps wrote:Hi ste-earl
It is so heartening to hear that you are recovering well after surgery, long may it continue!  I am waiting to see an endo so just at the beginning of all this malarkey, having bloods done again next week so will see how things are going this time.
Sue
Thanks, and good luck on your journey.

ste-earl

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Re: New to forum... Couldn't join old forum.

Post by Little Audrey on Fri May 02, 2014 9:10 pm

Welcome ste-earl! I am in a real rush right now, and I don't have time to post anything decent. I just wanted to check and see what was going on on the forum today.  Smile  I will be back either later tonight or tomorrow. VERY glad you could finally join us all here, and VERY glad you are doing so well!!

Audrey

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Re: New to forum... Couldn't join old forum.

Post by Tigerlily on Sat May 03, 2014 5:18 pm

Hi ste-earl

Good to know your surgeon was experienced - they are difficult to find from the off without a personal recommendation.

Could you post his name and the name of the hospital here, as it might be useful to others?

Many thanks
Tigerlily.

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Re: New to forum... Couldn't join old forum.

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