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I'm back, with a big development!!!

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I'm back, with a big development!!!

Post by pilipala on Sun Nov 29, 2015 2:09 pm

Dear All,

I can't believe it's been so long since I last posted. I've been trying to keep up with at least reading everyone's posts but I've been away for a lot of the last few months (and the forum tends to descend into dodgy pop-up spam when I access it on my android phone.)

I have rather suddenly made massive progress. I have spent this year trying to cajole my Doctors into repeat Ca/PTH testing and gathering enough results to demonstrate normocalcaemic primary hyperparathyroidism. They never agreed there was anything other than high PTH which they blamed on my low vitamin D. I sort of reached the end of the road when I finally got an appt at bone clinic and they said they don't offer surgery to nHPT patients anymore and besides I didn't have nHPT. A month later I got a copy of the consultant's letter to my GP saying they don't need to do Ca/PTH testing more than every 6 months. I was already pushing my luck at the GPs so this forced me to write to Dr N with the last six months of results.

He twice previously had told me to move on, it wasn't pHPT, but encouraged by Audrey's experience of being turned down at first, I risked another approach. This time he said pHPT was likely and I should speak to a surgeon of my choosing. I have previously spoken to FP who said sHPT and completely ignored my bad experience of taking vitamin D. Since the cost of private operations in London and Florida are the same and they have 10 times more experience in Florida - I applied to Florida. What with work trips away and my GPs being predictably appalling at sending my notes (apparently too difficult to fax and too costly to post, so they sent to me and I found they hadn't included any of my hospital notes despite the fact (in Wales) all GPs can access these from their surgery, so my years of pestering for printouts paid off cos I just scanned my records instead and emailed them across). Finally after several weeks, they phoned and said we're prepared to do it, but since you're normocalcaemic, we won't guarantee success. I asked how many patients like me they are able to help and they said 80%. I booked the op for two weeks later (inbetween work trips to Asia and Europe which in hindsight was a little mad but I just wanted to get it done).

I had surgery two weeks ago. They found three hyperplastic glands which they removed and they took a biopsy of the fourth. So much like Tigerlily 'multigland hyperplasia'. The three glands were all pumping out around 250 (sorry American units) - normal intraop values should be between 30-50 each. When they checked my bloods post op my PTH was 25 (a very appropriate 2.91 in British money). I had a tight throat for maybe 4-5 days but no pain and apart from sleeping a lot from the jet lag and anesthetic felt fine. It was really this week after recovering from the subsequent work trip and also lowering the high dose of Ca tablets you begin post op that I've started to feel really good. Just quicker in my thinking and having more get up and go than normal. It's quite strange to try and adjust my mindset. Friends have been telling me to pace myself but I've spent five years learning to pace myself, now I can readjust my pace!

Many apologies for not communicating earlier. I just had my head down and was pushing forward with what energy I had to get through it. I still can't quite believe I did it. 

Haven't seen my GP yet, I have my next bone clinic appointment in Feb so I'll let you know how it goes. I'm keen to know my blood results in a month or so before I can really celebrate. There is always the thoughts at the back of your mind about if 3 glands went wrong, what's to stop the fourth. But I'm fully intending to enjoy all this new-found energy whilst I can. I know how much I wanted to hear post-op stories so I'm not planning on disappearing. 

I'm hoping and praying that surgery has gone well for Jasmine too,

Lots of love and enormous hugs to everyone, cheers

Dee
xxxxxxxxxxxxxxxxxx

pilipala

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Re: I'm back, with a big development!!!

Post by Hadleigh on Sun Nov 29, 2015 3:30 pm

Crikey Dee you have been a busy bee, what a result :cheers:just proves we have to fight for what we believe in and keep pushing for some action.

Don't overdo it on the energy front, still early days post op so take it a bit easy if you can.

We will be very interested to hear what your next results are, hopefully everything bang on normal.

Take care
Love
Nelly xx
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Re: I'm back, with a big development!!!

Post by Little Audrey on Fri Dec 11, 2015 5:23 pm

Wow, Dee, this is GREAT news!!!!!    I'm SO happy for you!!!    Yes, sometimes we have to be bull dogs and continue butting heads with the doctors, but it does pay off often!!       So happy to hear the surgery went well, and you are now recovering!   cheers

Audrey

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Re: I'm back, with a big development!!!

Post by Tigerlily on Fri Dec 11, 2015 5:49 pm

So glad, Dee, so pleased for you!
Enjoy the new-found energy and zest for life - you deserve to.

Keep us posted on your results - my latest have been S/Ca 2.44 and PTH 4.46. I'd like them both to be lower really, but it does take time for things to readjust. It's 12 months almost since my surgery and both S/Ca and PTH have been rather up and down. And yes, the thought is always there that the 4th gland that "looked normal" could go rogue. That would make it 4-gland hyperplasia, and thus possibly MEN1. But we'll see how things go.

Love from Tigerlily xxxx

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Re: I'm back, with a big development!!!

Post by pilipala on Fri Dec 11, 2015 10:22 pm

Thanks ladies,

I met a lady last week who had all her parathyroids removed years ago due to thyroid cancer and she is very active and apart from taking alfacalciferol daily and regular monitoring she didn't seem to be badly affected by it so that has allayed my fears of running out of paras.

Still feeling great and still haven't been to doctors yet to check levels. I'm planning on going post Christmas.

Love to all,

Dee
xxxxx

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