Thyroglobin levels after 9 years

Starbuck2022 over 2 years ago

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Hello all,

I havent posted in years but have been on and off with reading up. I had my TT in 2013 25/12 so end of the year and no RAI because I had an option for thr first year of I wanted it or not because the operation was successful and haven't gone into my lymph nodes I said no to the RAI.

I have been having problems with hoarseness since having my TT and the last couple of years the endoscope has found adema on my voice box and I have been taking acid reflux tablets since TT and gavason when needed. I have mentioned to my consultant about pressure on my voice box and front of neck. I had a scan and that has all come back fine with nothing they can see.

My consultant phoned today to say my bloods for my thyroglobin had changed and gone up but he said that they would test again in 6 months which is October. I didn't ask levels which I should of now. But I have never in the last 9 years had my levels go up or change for them to say the thyroglobin had changed at all.

Does this mean it is coming back? Or is back?

He also said that the levels they check by at the hospitals had changed in Birmingham compared to Southampton which I guess is where he can be based too. But I don't know if this is true so I don't worry for the next 6 months maybe.

Not sure what to think, I even forgot to ask about my TSH levels too because I wasn't expecting him to say anything had changed after so long this was ment to be my last year of checks.

Anybody else got any insight please

Thank you

latchbrook over 2 years ago

Hi Starbuck2022

It's natural to worry that changes in levels means that your cancer has returned and it sounds like you could do with having a further chat with your consultant so that you have the opportunity to ask the questions you have thought of since you had your telephone consultation. If you have his secretary's phone number you could give her a call so that she can arrange this for you. If you don't have her contact details then you could phone the hospital and ask to be put through to his secretary.

I'll be keeping my fingers crossed that everything is okay for you

"Never regret a day in your life, good days give you happiness, bad days give you experience"

barbaral over 2 years ago

If you didn't have RAI, then you are quite likely to still have a little bit of thyroid tissue still in your body. That will produce thyroglobulin and consequently, you'll never get to zero for that blood test. You haven't told us what the level was before but I think you said on another thread that it was 1.86. That's really not very much for somebody who never had RAI. All it would take would be for any remaining thyroid tissue to grow a bit and the level would rise.

Thyroglobulin doesn't automatically mean the cancer is back - just that the cells you still have of thyroid origin are making more TG than last time.

OR - and this is pretty important - the samples have been sent to a different lab (or the same lab but a different machine) and that new machine is calibrated slightly differently.

Consider that there are very few people who get thyroid cancer every year, and even fewer who need to be monitored for TG on a regular basis. The vast majority of samples going through that machine will be from people who have dodgy but still active thyroids. They might be looking at somebody who has an autoimmune disease and shockingly high TG antibodies. The machine has to register the really high readings for that person and the really low ones that reassure those of us who have had surgery and RAI that there's nothing going on. You're at the bottom end.

If it used to be 0.1 and now it's 1.8, you'd want to know why. If it used to be 1.2 and it's now 1.8, it could be equipment changes.

I hope that helps.

Best wishes

Barbara

“Scars are tattoos with better stories.” – Anonymous

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Thyroglobin levels after 9 years