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Hello Everyone

Post by Phillybub on Tue Aug 25, 2015 10:22 pm

Hi All,

I am 47 years old from Wales in the UK.

I started to have broken bones around 9 years ago and it was discovered i had osteoporosis, which was treated with iv zoldronic acid 12 monthly over 3 years, i felt a bit better after it but never completely well, always aches and pains.
I pushed and pushed my doctor to look more into why i was depressed, tired and i hurt all over, they done a blood test on my thyroid (tsh), calcium and vit d, only the tsh came back at 7, this went on until last year when they finally referred me to a specialist, who measured my parathyroid levels which were elevated and my tsh was still eradic, my tsh has never come within normal range even though i have been taking levothyroxine every day.
The specialist ordered a ultrasound of my neck which showed an enlarged right side parathyroid, and decided it needed to be removed, September 2014 i had the surgery but he took the left one as it was 5 sizes bigger than the rest, and said the rest were fine !!
The tumor was very rare he said and that was why my calcium and vit d was always normal but tsh and pth were up and down, but that was it i went home the next day.

I never felt amazing after surgery and i was discharged from the specialist back into the care of my gp.

Over the last few months the bone pain is worse than its ever been and severe tiredness,constant broken sleep with the pain in my large bones if i move in bed,  my recent tsh was 19

I feel like no one is listening to me or doing the right blood tests, i honestly feel like a 90yr old with the cramps and pain, i dont know where to turn in this :(


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Re: Hello Everyone

Post by Tigerlily on Tue Aug 25, 2015 10:45 pm

Welcome to the forum, Phillybub. So glad you found us, but sorry to hear of your PTH problems.

Did you ever get a copy of the histology report for your parathyroid surgery? If you still have the enlarged right-side parathyroid, it could well be that that is causing you continued problems. If you can get a copy of the histology report, it might shed some light on your situation for you.

We have another forum member from Wales (at least one) who knows their way around the Welsh NHS system, so I hope they will hop on here to welcome you and give you better advice than I can.

I myself couldn't get any sort of sensible diagnosis in Suffolk, so I went to see Mr Fausto Palazzo at the Imperial College Endocrine Centre (www.imperialendo.com/for-patients/s/endocrine-surgery) in London who removed 3 hyperplastic PTH glands just before Christmas. I felt 200% better after the surgery although my TSH never really stabilised either, but your level of 19 is very high. The forum moderators Nelly and Edwin have expert knowledge in matters of the thyroid, so I'm sure they will introduce themselves to you very soon.

Do you think it might be an idea to ask your GP to refer you back to your original specialist again to investigate the worsening bone pain and continued symptoms? I would certainly be asking for that in your position.

I'm sure you will get valuable advice from the forum members here - we are very supportive of each other and new members, like yourself, are very welcome. Ask any questions you wish to and we will try and reply with some constructive suggestions.

Best of Wishes, Tigerlily.


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Re: Hello Everyone

Post by Hadleigh on Tue Aug 25, 2015 11:37 pm

Hello Phillybub and welcome

Well good heavens what on earth are your doctors playing at, how much Levothyroxine are you taking ? a tsh of 19 shows you are very undermedicated or that Levo is not working for you. Have you ever had your T4 and T3 tested ? as that would give us more clues as to what is going on with your thyroid.

A lot of your symptoms are because you are very very hypothyroid and a change of dose or a different replacement med should make a huge difference.

If you can get copies of recent blood tests and histology report we can hopefully give some advice. You do need T4 and T3 tested if it hasn't been done and if your GP is not to clever with thyroid matters (most aren't !!) ask to be referred to an Endocrinologist but choose carefully which one as some aren't very good either.

Don't despair we will try and help you out, 

Nelly x

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Re: Hello Everyone

Post by pilipala on Sat Aug 29, 2015 1:08 pm

Hi Phillybub,

So sorry to hear about your health issues and the lack of support you've had from the health service.

I'm based in Wales too (though I'm actually in SE Asia with work at the mo, so not checking the forum so often.) I've been a victim of the spiraling waiting lists and was recently informed that Cardiff and the Vale have taken the decision not to operate on normocalcemic pHPT sufferers since the risks of surgery were too great. They don't seen to have any idea of the risks of not treating sufferers and very little patience for people with 'multisymptomology' that don't fit neatly into one of their boxes.

I don't know whereabouts in Wales you are. My GP told me that any application they put in to get a patient treated in England was rejected, so not only are we left with a failing service but no way to access specialist help.

Please feel free to message me directly if you want to chat. Lots of people on this forum have been through similar struggles and are great at listening.

lots of love


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