Sestimibi... What to do!

Hi

What a disastrous morning! Was due my Sestimibi today, I double checked with the hospital I would be OK after this with my 2 small children, was advised I would be as long as no close contact for more than 15 minutes at a time for 24hrs. When I asked this again sat in the chair waiting for my injection, I was advised being in the same car or even in my childrens bedroom with them is not advised, I had to leave the hospital without the test! My husband is away this week working so it's impossible to not having any contact but I was told I just couldn't have them on laps and cuddles etc so I would have figured it out!
I spoke to my consultant who has advised they can't carry out the U/S without the Sestimibi.... As he wasn't keen on sending me for Sestimibi anyway as my last tests came back "within range" I don't know what to do about the Sestimibi! Is it worth a dose of radiation for the sake of the likelyhood of nothing showing up??

Soooooo confused..... I've had CT Scans in the past and not keen on anymore radiation unless it's necessary!!

I have no idea when I can possibly go 24hrs without child contact and I'm unsure whether to risk the radiation, the consultant has been honest as he doesn't think I have HPTH BUT he didn't rule it out on a previous set of tests..... Confused

I'm confused as well Lucie, not by the conflicting opinions on radiation exposure (although the information leaflet I was given when I had my MIBI said the same as you were originally advised) but by what the consultant said about not being able to do the US without the MIBI. My understanding is that it's the other way round, that you have the US first then get referred to the surgeon who requests the Sestamibi once the diagnosis is confirmed on biochemistry and US, although they don't always show anything, mine didn't.  As I recall though, your endo offered you the scans anyway, is that right, and you decided to go for them?  If I were in your shoes I think I would get back on to the consultant and explain your concerns about radiation exposure and try and persuade him to go ahead with the US on the premise that Sestamibi should never be used as a diagnostic tool anyway, it's more relevant for the surgeon as a localising study to try and get a better idea of where the adenoma is located prior to surgery.

Jasmine x

Thanks Jasmine. I emailed him and be advised that the USS (I'm assuming he means Ultrasound) can't be carried out first, but, like you I thought the Sestimibi was purely used pre surgery to see if the Adenoma lights up?!
I'll go back and explain my radiation concerns and see if I can persuade him. Yes, he offered me the tests even though my results shouldn't warrant further investigating, but that answer doesn't explain why I've had abnormal tests previously.

Lucie x

Hi Lucie

I can't recall what your numbers have been (shocking HPT memory....) or whether you've pursued normocalcaemic pHPT? Apologies if you have already gone down this route and ruled it out but it is a possible diagnosis for people who are symptomatic but have persistently so called 'normal' values.  Have a read of this - again, apologies if it's not relevant to you but just trying to think what might help you:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3127400/

Jasmine x

So sorry to hear about your morning Lucie, really hope you manage to get the US and most importantly they don't dismiss you and the symptoms you're having.

Thanks Jasmine for the article - I've added it to my list of papers to send my local endo dept. During my last appt I asked how many patients with normocalcaemic HPT they had treated and the answer came back 'None! You can't have HPT unless your calcium is over 2.6!’

I have a long way to go...

I have checked and he won't go ahead with the U/S without the Mibi as he claims the Mibi is the best way of imaging for HPTH diagnosis. He doesn't think the Radiation dose is too high as I explained my CT concerns. Does anyone feel like all they do is liaise with doctors!!

At my hospital they wanted the US and Mibi done at the same time so they can compare images.

Nelly

But was that for diagnostic purposes Nelly or pre-op imaging?  Had your diagnosis already been made?  My understanding is that localising studies shouldn't be used for diagnostics, just for the purpose of localising the adenoma prior to surgery.  It's so frustrating that hospitals and medics don't seem to be working consistently and all have their own rules, regulations and ways of doing things. Deep sigh ..... makes things SO much harder for us all!  When I had my surgery with Mac the Knife I had my US and MIBI done at the same time but the diagnosis was already made and it was just for localising purposes.

Jasmine x

Pre op imaging Jasmine. 

My US result would certainly have been no use whatsoever for diagnostic purposes as they couldn't make any sense of the various lumps and bumps showing up and I'm not sure anything showed on the mibi either so for diagnosing they both would have been a waste of time and effort.

Nelly