Fluctuating Tg levels

PD92 5 months ago

4 replies
26 subscribers
368 views

Hello,

I had a total thyroidectomy, central + left neck dissection and RAI roughly 2 years ago for papillary thyroid cancer. No distant metastases. I was 29 at the time.

Last year (9 months after RAI) I had the dynamic risk stratification done, which put me in the low risk group. Unstimulated thyroglobulin was 0.2 and stimulated was 0.6 (down from 2.9 before RAI). I've had a few ultrasounds, 1 whole body scan and blood works every 3 months so far and everything looked ok.

The unstimulated thyroglobulin levels have been fluctuating a bit in the last few months. From the initial 0.2 after RAI they went to 0.4 then 0.3 and now 0.6. The doctor seems happy about it and says anything <1 is really good and I should feel relieved but the increase I had in the last test (0.3 to 0.6, and up from an all time low of 0.2) makes me a bit stressed. The ultrasound didn't show anything of concern.

My next checkup is in 4 months and the doctor says there is no need to repeat the test, as these fluctuations are within normal limits.

I was wondering if anyone experienced similar fluctuations over time and whether I'm just overthinking it for no reason.

In case it helps provide a better picture, abs thyroglobulin antibodies have halved since the post-RAI measurement (when the thyroglobulin was 0.2), from 41 to 19, and TSH has also gone slightly up, from undetectable to 0.02 (because they reduced my levothyroxine dosage when I was put in the low risk category).

jane2511 5 months ago

Hello PD92

I hope you do not mind me responding as I had a different type of cancer to you. I saw your post and saw that you had not yet had a reply so by me doing so, it will bump your post.

I wonder whether it would be worth giving the Support Line a call and talking this through with one of the nurses. They would hopefully be able to give you some reassurance and explanation for the fluctuating Tg levels. The number is below.

You could also post this question to the Ask a Nurse section if you prefer.

(+) Ask a Nurse | Get answers about cancer | Macmillan Online Community

Jane

Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

LeanneP 5 months ago

Hi,

In my experience I would say if you are concerned and feel you could do with being put at ease, to speak to your team or email your clinic. I prefer to listen to facts from hospital rather than statistics and risk levels. Everyone is different. I am not sure what thyroglobulin levels should be after.

I think calling or writing your question in nurse section like someone else suggested sounds good, but again its opinions you will get based on your risk level, which doesn’t always help. I hope you get the answers you need

PD92 5 months ago

Hello,

Thank you both for replying! I did discuss this with my oncologist and clinical nurse and their response was just that for some patients tg levels fluctuate but that's fine as long as they're under control (<1). Which unfortunately I still don't find completely reassuring (I guess it's not rational but anyway...).

What was I was hoping to find here were people that went through similar experiences, to understand how their situations developed. I think it would have helped me accept that fluctuations can indeed happen and do not necessarily indicate disease progression.

Gold Finch 5 months ago in reply to PD92

I can understand that, but honestly, I would prefer to be led by the medics who see numerous cases and are familiar with the science/research.
I am steadfastly holding on to positive news and trying hard to assume it will last!

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