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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 11:37 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 Hadleigh on Tue Nov 01, 2016 12:25 pm

Oh dear many have been in your shoes, not unusual for scans to be negative, mine pretty much were. Have no idea why they thought they couldn't complete your scan, never ever have I heard of thyroid meds being a problem !! crazy.

You can see Consultants and Surgeons out of your area, you will need to get your GP to refer you as Consultants don't refer on to other hospitals. We live in Somerset but both see specialists in Devon, I just told my GP who I wanted to see and where she was, no problem.

If you have a surgeon in mind you can email his secretary to ask if going on your history would it be worth seeing him, then get a referral from your GP and if you are on good terms with your Endo I would run it by him as well, good to keep everyone on side.

If a surgeon is willing to go ahead I would think the op would be a full exploration rather than the minimal, with negative scans and no location of the offending article he would need to go on a search and destroy mission ! my op was like that as my scans were rubbish but surgeon was happy to do it anyway, took 4 hours to find the blighter.

The only positive is that your Endo hasn't sent you on your way, he is seeing you again fairly soon and if he's convinced there is a problem then he hopefully won't give up.

Let us know how you get on, keep at it Smile

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

Post by O'Mahoney on Tue Nov 01, 2016 6:01 pm

Ok, so I have to go back to my GP for the referral - I didn't realise that, thanks Nelly.  As she has been so hopeless for the past few years I think my plan will be to wait to get the MRI done, see my endo at the appointment I have in December and if the MRI is negative too, ask him, given that he is 99% sure it is hpt, if he will suggest to my GP to refer me to Mr Mihai in Oxford.  I honestly don't think she will refer me just at my request - she has just been giving me CFS, Fibromyalgia and pain management leaflets for the past five years and telling me to self diagnose.  Well I did,with the help of blood test results and websites like yours, and came up with pth but she just told me it couldn't be that - it was too rare!  Thanks again Nelly.  Annie

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

Post by Hadleigh on Tue Nov 01, 2016 8:06 pm

Annie your Endo may be able to refer you, worth asking, my Endo do refer me to the surgeon but the surgeon then wrote to my GP as he needed a referral from her, thinking about it that may be because Endo was private and surgeon was NHS, perhaps ignore what I said !

I think waiting for MRI results is wise then see what your Endo says, it seems he's on your side so is unlikely to send you packing.

You will find most of us had to diagnose ourselves, doctors are incapable of doing the dots !!

Good luck with the MRI, I had one about an hour ago, not my favourite pastime but at least this one was quick, no doubt a waste of time as my Gastro can't join the dots either !

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

Post by Hadleigh on Wed Nov 02, 2016 9:34 pm

Annie, have you read Jenny's post today ? she also had a negative mibi scan but her surgeons have agreed to go ahead, so don't despair you will get there to.

Take care
Nelly x

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

Post by Tigerlily on Wed Nov 09, 2016 12:39 pm

Hi Annie - I am an old forum member who has been a bit distracted with bone problems recently and I have not been here for a while.

I have a feeling that PTH adenoma/hyperplasia doesn't often show on MRI scans, which is why ultrasound and nuclear sestamibi scans are usually used. But these are not used for diagnosis - usually just pre-operatively by the surgeon before he proceeds to surgery.

The diagnosis of PTH is usually clear from the blood tests - i.e. high or high-normal serum calcium paired at the same blood draw with inappropriately normal or high PTH (because in health, if the calcium were high, then the PTH should be very low).

Consultants are generally no longer allowed to cross-refer to other specialists, which is why we are all twanged back to our GPs for an onward referral.

Mr Mihai has done quite a lot of PTH surgery (see list of consultants on this site in the reference section) so I hope you will be safe with him if you can get to him. Why not callh is secretary and ask her if it would be OK for you to write to Mr Mihai and tell him your symptoms and blood test results? Or you could just do that anyway without calling, if you wished. I'm sure he would reply to you.

Other wise, December is not too far off now and your MRI date will be here soon. But don't bank on anything showing up on an MRI, because most surgeons who know about PTH surgery don't seem to order MRIs, in my view (but that is only my view).

Also, to get more information of PTH disorders and PTH surgery, have a look at the pages of www.parathyroid.com.

Keep us posted on developments.

Best of Wishes, Tigerlily.

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