Thyroid Isotope scan...advice,please! - Thyroid UK

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Thyroid Isotope scan...advice,please!

chocoholic17 profile image
19 Replies

Sorry, me again folks. Am I right in thinking I have to lie with my head tilted back for a thyroid isotope scan? It's really worrying me because when I had the ultrasound done, I couldn't lie down for more than a minute or two, without gagging and feeling that I was going to choke. The ultrasound showed my thyroid was not enlarged but I have multiple nodules on one side of it. What will happen if I physically cannot lie back for this procedure?

I read about Levothyroxine having to be stopped four weeks before this procedure and my doctor only put me on this drug two weeks ago, after my anti-bodies test came back at 380. He has gone on holiday now and never mentioned stopping the Levo. No one could tell me at the surgery, so in desperation, I phoned the endocrinology department at my local hospital. Very lovely, helpful lady there phoned the nuclear imaging people direct to find out. Back came the message that no, I don't need to stop taking the Levo and that I was to be told off for looking things up on the Internet and getting things wrong. Five minutes later, the same lady phoned back with an apology. Nuclear imaging folk had phoned her back to say I WAS right. Levothyroxine to be stopped for three to four weeks before an isotope scan can be done. Well,thank goodness I found out but of course, it means another month delay in finding out what exactly is going on and another month of feeling like I'm choking etc.

I'm a tad worried at WHY I need this second scan. My doctor suspected Hashimoto's, I've nodules already detected from the first scan, my antibodies are raised and I have lots of varying symptoms like hair loss, pain in feet etc. if they are checking the uptake of the radioactive stuff they inject me with, does that mean they are thinking it might be something other than Hashimoto's or might they suspect the nodules are cancerous?

Without being able to speak to the G.P. who has requested this isotope scan, I've no way of knowing.

I plan to ask for a referral to an endocrinologist,once my G.P. gets back in the New Year but having to wait and worry over Christmas is a bit of a blow.

Does anyone have any thoughts about my isotope,please?

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19 Replies
helvella profile image
helvellaAdministrator

I feel like giving up - the sheer number of patient-oriented documents that the NHS has put on-line, and then they say not to look things up on the Internet!

Including a "news feed" box from right here into NHS Choices.

And, for example:

sfh-tr.nhs.uk/images/docs/p...

Remember, don't eat glacé cherries. (Lots of iodine in many of them.) :-)

Rod

chocoholic17 profile image
chocoholic17 in reply tohelvella

Ah, thank you for that link, helvella. Most helpful. I am new to this site and still trying to find my way around, so I don't know where the NHS link was to be found. Obviously I Googled but could find nothing specific and straightforward as this link. No one will ever stop me looking things up though and I knew someone on here would be able to point me in the right direction, so thanks again.

Not the news I really wanted though.... I just don't know how I will manage to lie flat and still for 30 minutes without gagging and feeling like I'm choking.

I still wonder WHY my G.P. wants this done.

helvella profile image
helvellaAdministrator in reply tochocoholic17

Very likely to find out if you have a HOT nodule. There are reasons not to do isotope scans if cancers are suspected (not sure how widely that is believed).

Do bear in mind that different nuclear medicine facilities have different equipment and techniques - try to find out about your local one. In Google, you can add site:.nhs.uk to searches to restrict the search to official NHS only. Rather too many links for me to wade through but you might be able to narrow further (e.g. include town or trust name).

galathea profile image
galathea in reply tohelvella

Rod, really? Iodine in glacé cherries? I have a real thing about them and have always absolutely craved them..... If I buy any for making cakes, I have to buy two packs,because I cannot get home from the supermarket without eating some.

I have been nuts about eating them since my early teens. Hashimotos was diagnosed when I was about 29 though it took two years to get the diagnosis. Hmmmmmmm......interesting. Wonder if I was iodine deficient.?

G xx

helvella profile image
helvellaAdministrator in reply togalathea

Really and truly!

Erythrosine is commonly used in sweets such as some candies and popsicles, and even more widely used in cake-decorating gels. It is also used to color pistachio shells. As a food additive, it has the E number E127.

en.wikipedia.org/wiki/Eryth...

Erythrosine is 57.69% iodine by weight.

(Levothyroxine is 63.54% iodine by weight.)

Rod

nightingale-56 profile image
nightingale-56 in reply tohelvella

As currnet Levo is not too brilliant, I would think this could only help me. And as I can't eat Chocolate Brandy Cake without glace cherries in it and have done for to many years to count, I think I will just carry on. Thanks for this infor Rod and a Merry Christmas and Happy new Year.

chocoholic17 profile image
chocoholic17 in reply togalathea

Have to admit, I'm a big glace cherry fan too, galathea. When I was little, my mother used to buy a slab cake from M & S, full of whole glace cherries. I would pick them all out, eat the sponge bit of the cake, then savour all the cherries in one go.Sometimes, these days, I use them to bring my sugars up if I have a diabetic hypo. Definitely on my 'yum' list but I'll lay off them now I've had that warning.

I do buy the glace cherries with natural colouring now because my son had to avoid artificial colours as a child and that was when I first starting reading food labels properly.

helvella profile image
helvellaAdministrator in reply tochocoholic17

I am not sure anyone should change a lifetime habit on the thin evidence above?

Perhaps it has been an important source for you?

I really feel out of my depth - everything to do with iodine seems to be riddled with apparent contradictions.

I always preferred maraschino cherries... :-)

greygoose profile image
greygoose in reply tohelvella

I've always believed that if you like something, or loath it, it's for a reason. Your body is telling you something.

Personally, I have always loathed glacé cherries. And perhaps I now know why!

greygoose profile image
greygoose in reply togreygoose

PS Black cherries are the best! Especially as black cherry jam with goat cheese!!! Ummmmmmmmmmm

helvella profile image
helvellaAdministrator in reply togalathea

Quite a number of medicines include erythrosine, including at least one make of each of the following:

alprazolam

aluminium hydroxide

amitriptyline hydrochloride, perphenazine

amoxicillin

ampicillin trihydrate

benzocaine, tyrothricin

betamethasone sodium phosphate

budesonide

cefalexin monohydrate

chlordiazepoxide hydrochloride

demeclocycline hydrochloride

diazepam

diclofenac sodium

diltiazem hydrochloride

dipipanone hydrochloride, cyclizine hydrochloride

doxepin hydrochloride

erythromycin

ethinylestradiol, norethisterone acetate

fenofibrate

ferrous sulphate

flecainide acetate

flucloxacillin sodium

fluconazole

fluoxetine hydrochloride

gemfibrozil

hydromorphone hydrochloride

hydroxycarbamide

hyoscine hydrobromide

ibuprofen

isoniazid, rifampicin

itraconazole

ketoconazole

ketoprofen

lisdexamfetamine dimesylate

loperamide hydrochloride

lymecycline

meptazinol hydrochloride

methylcellulose

minocycline hydrochloride

morphine sulphate

naftidrofuryl oxalate

norethisterone, estradiol

norgestrel, oestrogens, conjugated

omeprazole

paracetamol

paracetamol, caffeine, codeine phosphate hemihydrate

paracetamol, caffeine, phenylephrine hydrochloride

paracetamol, codeine phosphate

paracetamol, codeine phosphate hemihydrate

phenelzine sulfate

phenoxybenzamine hydrochloride

poloxamer 188, dantron

prednisolone sodium phosphate

salbutamol sulfate

sodium alginate, calcium carbonate, sodium bicarbonate

tetracycline hydrochloride

tramadol hydrochloride

trandolapril

trazodone hydrochloride

triamterene

valproic acid, sodium valproate

venlafaxine hydrochloride

A list of the medicines including actual makes and links to Patient Information Leaflets available here:

dl.dropboxusercontent.com/u...

Please note: Not all medicines appear on the EMC site. Not being in the list does NOT mean anything.

Rod

RedApple profile image
RedAppleAdministrator in reply tohelvella

So it seems that the moral of this story is... if it's pink, check the ingredients to see if it contains erythrosine!

Bubblegum? :D

helvella profile image
helvellaAdministrator in reply toRedApple

This girl would have a problem:

youtube.com/watch?v=ZyhrYis...

:-)

Spareribs profile image
Spareribs in reply tohelvella

sometimes I worry about you Rod...

not often... thankfully

in reply tohelvella

Thank you for this information Rod. So as I have Hashimoto's do I need to avoid all of these things you mentioned as above? In the past I took Amoxicillin for a dental abscess, diclofenac sodium, ibuprofen, ferrous sulphate (currently taking), paracetamol and paracetamol with codeine (cocodamol). These have all been taken over the past 10 years so is it possible they could have caused it? Would the doctors know anything about this?

helvella profile image
helvellaAdministrator in reply to

Of all the makes of amoxicillin, diclofenac, ibuprofen, ferrous sulphate, paracetamol and cocodamol, it might be only one of each that uses the red colouring erythrosine at all.

By far the majority of paracetamol that I have seen are white tablets and do not contain any. Only Novartis diclofenac has any erythrosine. And so on.

It could be that NONE of the ones you have taken contained erythrosine.

If you look at this document:

dl.dropboxusercontent.com/u...

... you can see the exact makes/products I found.

in reply tohelvella

Thank you Rod.

Spareribs profile image
Spareribs in reply togalathea

me too!

Ruthi profile image
Ruthi

You can get naturally coloured cherries (they are relatively dark in colour) which are coloured with anthocyanins. For example

waitrose.com/shop/DisplayPr...

I only chose Waitrose because I know they have full ingredient declarations online.

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