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Help! Negative Sestamibi scan - what should happen now?

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Help! Negative Sestamibi scan - what should happen now?

Post by O'Mahoney on Tue Nov 01, 2016 11:27 am

Hello again, I'm afraid once again i have to apologise for my tardy posting but I hope that one of you lovely people will take the time to read this and offer your advice/insights.   Briefly - after many battles with my GP I finally got a referral to the local endo.  He told me there was absolutely no doubt I had primary hyperparathyroidism, - had had it in fact, looking at my blood tests, since 2005 and he couldn't understand why none of his colleagues had picked it up.  He was puzzled that my bone profile looked so good given the length of time I had had hpt until I told I'm that I had been on hrt since 2009 - he said that had been my saving grace.  So I would have two scans - a Sestamibi and an ultrasound followed by a non invasive surgical procedure and he would see me again in 4 months.  Bet you can all imagine how I felt when I came out of that appointment - if I'd had the energy and muscle strength I would have jumped sky high!!  So after six hour round journey to hospital for mibi scan and three weeks of silence I called my endo only to be told it had been negative and he would see me in December.  Seemed like I was getting a complete brush off - no mention of second scan or operation now.  I asked him if he was still happy with his diagnosis and he said 99% looking at the science (I'd also done a 24 hour urine test).  The only thing I took away from the conversation was that because my bone profile was healthy very little else mattered - not the extreme fatigue, the depression, pain, apathy, lack of memory, mood swings etc etc - he said walking was good for depression but I shouldn't be depressed because I was really a very healthy person???!!!  So I wrote to him - explaining, amongst other things, that I couldn't keep taking hrt indefinitely to keep my bones healthy as long term usage had other very detrimental effects and at 62 I was already overstepping the safety mark for it.  I asked if it was possible I could be referred to a Mr Radu Mihai who has a clinic at the John Radcliffe in Oxford who apparently specialises in surgery in patients with negative scans.  The response was a phone call from his secretary telling me I would be referred for an MRI - that was three weeks ago but I haven't had an appointment through yet.  Does anyone have any ideas why I should have gone from what was such a promising initial meeting to basically 'no action required'?  Could my Sestamibi scan have been compromised - I was told they couldn't do the second part of the scan because of my thyroid meds?  Is it normal for an endo to basically give up after one negative scan even though he's happy with his diagnosis.  And finally and probably most importantly, am I within my rights to ask to see a surgeon in a different area from where I live?  Even if my endo did decide to refer me to a surgeon I'm worried that if its someone local they won't have the  relevant  experience to operate successfully.  Sorry this is so long winded and if you've managed to get to the bottom here - thank you!  Very best wishes.

O'Mahoney

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Re: Help! Negative Sestamibi scan - what should happen now?

Post by Tigerlily on Wed Nov 09, 2016 2:48 pm

Hello O'M
I notice that no-one has replied to you yet, but I will as soon as I can get
myself back in front of the PC again - back later today hopefully.
Best of Wishes, Tigerlily.

Tigerlily

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Re: Help! Negative Sestamibi scan - what should happen now?

Post by Tigerlily on Thu Nov 10, 2016 9:49 am

Hello  O'M - I see that you have had replies over on the later duplicated topic with the same title - silly me!
Tigerlily.

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Re: Help! Negative Sestamibi scan - what should happen now?

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