Feeling confused...

[Gem_gems]

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...

[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]

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

[Gem_gems in reply to greygoose]

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 in reply to Gem_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.