Feeling confused...: Hi I am new to the forum and... - Thyroid UK

Thyroid UK

140,892 members166,004 posts

Feeling confused...

Gem_gems profile image
4 Replies

Hi I am new to the forum and my brain is spinning at 100 miles an hour... I just wondered if people could give me some experience or suggestions of places to look for information - it is a mine field out there and struggling with where to start.

Sorry for the long post, but here is the background...

I am now in my 4th episode of overactive and got so fed up paid to see a private endo last week.

Each time my TSH is fully suppressed and my T3 and T4 are elevated, but not stupidly so. I was referred for RAI 3 years ago after the 2nd episode, but by time I got to see the nuclear medicine consultant I was back in normal ranges (I am very sensitive to the anti-thyroid drugs and had rashes etc... on them), so it was put on hold. I then when over again, and was booked in for the uptake test with a view to treatment. The uptake test was unsuccessful (consultant thought it was because I had had iodine during an operation) and so was asked to come back in 6 months.

At the 6 month point, I was back to normal ranges and the uptake test was successful, with treatment put on hold, but knowing it should work when the time was needed.

I have now gone overactive for a 4th time, went for the uptake test, which showed it wouldn't work - no reason at all for it - don't eat seafood, take supplements etc... at which point he advised me to come back again in 6 months and try again. This is when I was getting very frustrated and paid for private as they were not really looking in to the cause or putting me in front of an edo - just purely looking at the RAI.

The private consultant has told me it is Graves and has given me a lot to think about, putting surgery as a serious option in my mind - he has said that there is a chance I could be 2 years down the line with RAI still not showing an uptake and as I have a large goiter (it is uncomfortable, often have a gravelly voice (or pretty much loose it when my glands near by are also up) and have recently started driving my partner mad with snoring more and more, which I am convinced is linked as it has got worse as my goiter has grown...

The consultant has told me that whilst the RAI could shrink the goiter, as it is still there when I am not overactive, there is a chance it will not go...

For those who have had RAI or surgery - how have you made the decision, and for those with a goiter - did RAI make it go away?

So confused at the moment...

Written by
Gem_gems profile image
Gem_gems
To view profiles and participate in discussions please or .
Read more about...
4 Replies
Greybeard profile image
Greybeard

Hi Gem, for anyone to comment in a sensible way you would need to post your thyroid test results together with their ranges.

greygoose profile image
greygoose

Did your private endo test your TRAB or TSI antibodies to confirm Grave's?

Gem_gems profile image
Gem_gems in reply togreygoose

Hi greygoose - they have tested for the anti-bodies which was negative, but he has told me 20% of people with Graves do not show on the test and that everything else fits... Just fed up after years of backwards and forward and just want it sorted once and for all!

greygoose profile image
greygoose in reply toGem_gems

But, which antibodies did they test for? they don't always test the right ones. Have you got a copy of your results? If so, post them here. No-one can really help you without seeing the actual results. Don't care about opinions like 'negative' or 'normal', we need to see the numbers.

Not what you're looking for?

You may also like...

Pregnant, overactive, NHS aren’t helping

Hello. I am 29-weeks pregnant and my TSH just came back 0.3. I feel I have an overactive thyroid...
TillyFlop7 profile image

Have Graves and Hasimotos antibodies...

I have been suffering from an overactive thyroid for 6 months and the Carbimazole isn’t working. I...
Nat1972 profile image

Confused

Hello everyone I'm new to this group I have a overactive thyroid I had a radioactive scan done no...

Confused

I was overactive for 6 months, then Endo persuaded me into RAI treatment. This was approx 2years...
Pinkpeony profile image

Radioactive iodine treatment worries

Hi everyone, I am due to have RAI on Friday following a thyroid uptake scan today, and as I am...
GreenGirl80 profile image

Moderation team

See all
Jaydee1507 profile image
Jaydee1507Administrator
RedApple profile image
RedAppleAdministrator
SlowDragon profile image
SlowDragonAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.