Thyroid uptake test result

[Butterfly87x]

Report of my thyroid uptake test. Photo of thyroid showed pure black I.e Graves’ disease.

Any advice or help welcomed.

[Greekchick]

Hi there Butterfly87x,

I have read over your report as posted - in particular, the last sentence of the report recommending RAI may require further investigation on your part.

I would ask for a second opinion and as well, ask if a trial treatment with methimazole or other anti thyroid drug is indicated for you before undertaking such a drastic step. They do not indicate the size of your goiter, and there is some question as to the degree of uptake - no official ranges are posted. I have had these scans prior to my TT and there is usually more information here.

This requires discussion with your physician as to next steps.

My history - I was on methimazole for two years and I had a very large goiter and Graves. I then became resistant and unfortunately, had to have a TT. I was offered RAI first even before the medication - which I refused - but I did so because I had such a large goiter and suspected it would need to be removed eventually. The research suggests that if you have RAI and then you need a TT , the results are not as good as if you had the TT to begin with.

Just to be clear - I am not saying you need a TT - that was just my experience. I am simply saying that you need to investigate and see what all your alternatives are before permanently killing off your thyroid.

I am not a doctor nor an expert- as I often say when I post here - but this is an area where I can at least offer my experience with hyperthyroidism and multinodular goiter for 23 years and Graves for 2. Unless you are facing an emergency, thyroid issues move slowly. You have time to talk to doctors, get a second opinion, and make a decision that is right for you.

I hope this is helpful and wishing you all the best. Sending you positive thoughts.

[Butterfly87x in reply to Greekchick]

Hi Greekchick thanks so much for your reply. I had a consultation with my endo yesterday, he and I both agreed it’s too early to go straight to RAI or TT even though he confirmed I’m a candidate for both, but seeing as I have two young children we decided to wait and see how the next year goes on medication. He didn’t mention the one you posted though I haven’t heard of that he said he would start me on carbimazole (not sure that’s the correct spelling).

I seem to just be feeling worse by the day at the moment so I’m willing to try anything to help me feel like me again. I had an awful night last night with pains in my head it literally felt like my brain was being fried in a microwave that’s the only way I can describe it. Is this common the day after iodine uptake test does anyone know? Hoping it was a temporary thing and doesn’t come back today!

[Greekchick in reply to Butterfly87x]

I’m relieved to hear you met with your endo and discussed the options at least - and he is starting you on a drug regimen to begin with . See how the carbimazole goes ( in Canada we get the methimazole, sorry!) - you will hopefully feel better soon - it takes a bit of time to kick in. Hang in there in the meantime - I know you are in great discomfort.

Also remember that your dose can always be adjusted up or down as needed so don’t be shy to ask for that - and you will need regular blood tests for liver and white blood count.

I hope you feel better very soon! Keep us posted on your progress. All the best to you. 🤗

[Butterfly87x in reply to Greekchick]

Omg that’s useful to know! We’re actually moving to Canada in June, that’s one of the things I had to discuss with my dr to tell him whatever he starts me on won’t be followed up with him as I’ll be in Canada by then, hope can find a good endo there and useful to know it’s got another name there thanks!

[MaisieGray in reply to Butterfly87x]

It's not so much that it's got a different name, the two are very directly connected but different - carbimazole is a pro-drug that converts to its active compound methimazole, after administration. It has a higher molecular weight than methimazole, so dosing of each could be different - 5 mg of carbimazole is equivalent to 3 mg of methimazole - plus, the half-life of carbimazole is 3 - 6 hours, the half-life of methimazole 6 - 15 hours.

[helvella Administrator Thyroid UK in reply to MaisieGray]

A while ago I was reading up on this and apparently carbimazole has some small anti-thyroid activity as itself - that is, even before converted.

[MaisieGray in reply to helvella]

Interesting, although given what's generally described as its 'rapid' conversion to its active compound, you have to wonder how it came about that they isolated that direct action. I guess though, that there's scope for science to catch up with other inactive/pro-whatevers and similar discoveries be made about them too.

[Greekchick in reply to Butterfly87x]

We have many good endos here -don’t know what part of Canada you are going to - I am in Montreal - but good luck with your move. You’ll be feeling much better by then, I hope! All the best.

[Butterfly87x in reply to Greekchick]

Ha I’m going to Montreal..how funny! I guess I could use advice when I get there from you of which endo is the best! 👍🏼 I really hope I’ll be feeling better by then but seeing as I’m feeling worse by the day and it’s so close to June I’d be surprised! Moving across the world with two young kids is a mission on its own without adding in the trouble of being ill but hey I’m sure it will work out ok!

[Greekchick in reply to Butterfly87x]

How cool is that! Message me when you are ready - all the best!