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MIBI help!

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Hadleigh
Tigerlily
Brigitte0
Amanda Lynne
Lucie83
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Post by Lucie83 Thu Jul 17, 2014 6:50 am

Hi All


Can anyone tell me whether I'm going to be exposed to radiation from a MIBI? I can't get a simple answer from the doctors on this. I've had a few CT scans in the past which I'm totally forever paranoid anyway but as my Endo thinks my levels don't scream HPTH, I managed to swing a MIBI & Parathyroid U/S (privately) but I'm worried I'll be putting more radiation into my body and it may show nothing!


Thank you

Lucie83

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Post by Amanda Lynne Thu Jul 17, 2014 6:56 am

Hi Lucie
The answer is yes you will be exposing yourself to radiation, I don't know how much sorry, I myself have had 2 mibi's and two ct scans since I was first diagnosed and I think that before I'm eventually diagnosed again I may have to have more. Only you can decide if you want to have more radiation.
Amanda xxxx
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Post by Lucie83 Thu Jul 17, 2014 7:09 am

Thank you.

I thought as much  Shocked  Did your MIBI's show anything?

I have an appointment for Parathyroid Ultrasound and was wondering whether I could convince the Endo to let me have this and skip the MIBI!

Lucie xx

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Post by Brigitte0 Thu Jul 17, 2014 9:18 am

Hi Lucie

I was told they're more likely to find an adenoma from the sestamibi than the u/s, but it all depends on where it's situated and how good the sonographer is! My adenoma was pinpointed because they knew where to look because it had shown up on the sestamibi. Amanda is right in that only you can decide if you want more radiation or not. I was keen on every opportunity to find the darned thing! It still might not show anything, but that doesn't mean anything because it/they might be hiding! 

Good luck with whatever you decide. 

Love 
Brigitte xx
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Post by Tigerlily Thu Jul 17, 2014 10:38 am

Hi Lucie

I'm just like you about anything vaguely invasive.

Why not try and split the two scans and have the simple US first? You should be able to do this if you are paying for it. (I'll be having a rant later about the fact that GP's (and endo's) in some areas don't seem to be able to order a simple neck US.)

If it shows nothing, then it's your choice to have the MIBI - but if you have split the scans at least you'll have time to think in between.

If the US shows something then the only MIBI I would want after that would be the one done by the surgeon prior to my op.

I wouldn't care to have a MIBI before an US. There must be a reason why they do it that way around - must find that out.

Let us know how it moves forward.

Love from Tigerlily xx

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Post by Lucie83 Thu Jul 17, 2014 11:01 am

Thank you everyone.

I'm going to contact him this afternoon and request the U/S first, he's already told me he thinks both tests will show nothing. I'm private through my Health Insurance so as agrees Tigerlily, surely I can request this?

Xxxx

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Post by Hadleigh Thu Jul 17, 2014 11:07 am

I had mibi and us on the same day and was told they like to do them at the same time so they can compare all the images together.

Nelly
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Post by Tigerlily Thu Jul 17, 2014 11:22 am

Hi Nelly

Did you have the US before the MIBI or the other way around?

Tigerlily xx

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Post by Lucie83 Thu Jul 17, 2014 11:49 am

Well I have contacted him - I await the response  Shocked

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Post by Lucie83 Thu Jul 17, 2014 12:37 pm

Well, he's replied and begged for me to have the Sestamibi as it gives the Radiologist a road map for the U/S and has genuinely insisted it's minimal radiation - what a headache!!

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Post by Hadleigh Thu Jul 17, 2014 12:43 pm

Hi tigerlily

I had 2 of the mibi scans then zipped in for the us then the 2 final mibi scans. They couldn't tell from the us if they were looking at adenoma, lymph nodes, nodules or thyroid tissue so they needed to see the mibi alongside the us to make sense of the pics.

Nelly
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Post by bridggar Thu Jul 17, 2014 2:39 pm

I had one Ultrasound scan which located within 5 minutes (she was good) and then a mibi scan a few weeks afterwards to confirm. Surgery 3 weeks after that.

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Post by Brigitte0 Thu Jul 17, 2014 2:47 pm

Well Lucie, it's your decision, I'm afraid! Sorry, but I can't really understand why you asked for it and now don't want it? Everybody's opinion is different, so it will take you some soul searching to decide whether you want it or not. I did an awful lot of googling beforehand to find out more about it and was given a cancellation appointment so it was do or don't in a split second decision! 

I'm sorry you're so torn and wish you all the best as you make your decision. Have some virtual hugs Smile

Love
Brigitte xx
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Post by Tigerlily Thu Jul 17, 2014 3:35 pm

I see what you mean, Nelly - I can understand they might need both, but I would have thought the MIBI would have given the most information.

My adenoma has been seen on US only so far. I had to insist on one because no-one was interpreting the blood chemistry correctly.

I think these scans are minimal radiation these days, Lucie. Everything is well focussed - not like the old days when they all ran out of the room for a simple X-ray!!

In your position, I would probably agree to have them both but as I would be paying for them I would insist on the US first. That would ease me gently into the whole process, but that's just scaredy ole' me. But it sounds as if each centre has its own protocols, so maybe you just have to jump in and get it over with.

Feet up, cool down and have a cuppa - then decide - and let us know!

Love from Tigerlily xx

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Post by Amanda Lynne Thu Jul 17, 2014 4:33 pm

Hi Lucie
I had mibi first and then US it showed up on both but the gut doing US knew exactly where to look from mibi results. I don't know what happens if it's not showing on mibi I guess they check all 4. Maybe that's a better idea anyway. They might have picked up another one on me.
Good luck with which ever you choose.
Amanda xxxx
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Post by Meggy Thu Jul 17, 2014 7:31 pm

I've been referred for US and mini - but have been told that my appointments will come through separately, given that our hospital had a new appointment system and 2 people came in today with appointment letters but nothing on the system, I really can't see them happening together. Bredgar, that sounds really speedy, are you in the uk? Lucie (bloody spellcheck keeps changing it to Luvvie, and Lucia!) I'm afraid I don't know the exact dose but I'm fairly certain that the radioactive dose isn't that high. Good luck with whatever you decide:-)

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Post by bridggar Fri Jul 18, 2014 8:23 am

I am in UK, yes - both were private appointments (as was surgery) so perhaps not indicative of usual NHS turn around.

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Post by pilipala Fri Jul 18, 2014 9:46 am

If it makes you feel better we are all everyday exposed to background radiation and over the course of your lifetime it exceeds that which you get from a scan. Heck, even the gas that comes into our homes is mildly radioactive, some sensors in smoke detectors use radioactive sources, natural elements in the ground give off radiation - Lots of things around us. It's not something new to our bodies. 

In the case of some medical imaging the risk is about the operator getting that exposure all day long everyday, so they need to protect themselves. As the patient your exposure time is very short so it's not a problem. Also the amount of radiation is low compared to the size of your body whereas to an unborn foetus it's much bigger which is why they are uber cautious about potentially pregnant women.

Medics are incredibly risk averse. They hate putting any patient through anything that might cause harm. So when they say something is safe, I generally trust them. 

Look at it this way, there is evidence that an untreated parathyroid adenoma could take 10yrs off your life (and greatly reduce the quality). There is no evidence that a mibi scan will make any difference to your lifespan.

Hope that makes sense and helps with your decision.

Love Dee

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Post by Lucie83 Fri Jul 18, 2014 10:13 am

Thank you Dee, that's really given me some assurance. I'm very paranoid about the CT scans in the past but I think, if they were that risky, would they offer them! I'm going to go ahead with the MIBI, as you said, living with HPTH can knock years off your lifetime, and let's face it, who wants to live with the condition!

Thank you x

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Post by Brigitte0 Fri Jul 18, 2014 10:20 am

Take care Lucie and I hope you feel better about things having made the decision. Good luck as you move forward. 

Love and hugs 
Brigitte x
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Post by Tigerlily Fri Jul 18, 2014 10:55 am

Yes, good luck, Lucie - I'm sure it will all be fine.

Love from Tigerlily xx

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Post by Little Audrey Fri Jul 18, 2014 6:57 pm

Well, Lucie, I can certainly understand the concern. I myself just had another x-ray last week, and I debated that too. I'm so tired of all the radiation! I was happy Dr. Norman suggested waiting until the day of surgery at his facility to get the mibi. I had so much trouble getting diagnosed, I was considering having a scan in hopes that a tumor would be revealed, and I could finally be diagnosed, but I held off and waited until the morning of my surgery in Tampa. The mibi that morning was negative; although, there were 2 tumors hiding in there! I am not sure what to tell you about your mibi. As everyone said here, it will be your decision. I know it's a tough one! Good luck!

Audrey

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