***. Update to below is that after asking for a thyroid check (it was advised after initial blood tests in October) 10 days ago and told it was not necessary, I asked my cns this week to request one - GP then called me urgently to say my thyroid was dangerously low- 90!
I've been put on levythyroxine which I think will take 6-8 weeks to make a difference to my fatigue and low mood.and now I'm exhausted in bed.
I'm pretty frustrated that I needed to push for this since it obviously got zapped in the RT and no one looked or checked or even mentioned my thyroid.
I actually feel angry that this wasn't checked weeks ago since finishing RT in April - it's actually masking me feel worse than I've felt yet and stopping me from going on holiday- I have no energy now at all.
But at least an explanation I suppose, just shows how much you have to push for things and follow your feelings ***
Yes. Plenty of advice here about having thyroid levels checked because no body at the hospital tells you.
Hope you feel better soon.
The other thing you press for is a baseline Carotid and Vertebral artery Doppler. You might have to pay for it though.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Thank you, they said they'd check in three or four weeks but I want to know it's going in the right direction as I am feeling worse. I'll call the cns tomorrow and maybe the gp and see if I can get checked this week.
have you had this? I am worried I'll go down hill but my heart and oxygen levels were good yesterday, I probably just need to be patient and calm.
Thank goodness that you have found out what is going on and have started treatment. The thyroid issue can happen many years after radiotherapy too. My thyroid gave up the ghost 20 years later when I was in my 40's after I had radiotherapy for a benign condition that they no longer use radiotherapy for. It came out of the blue and I did not track it back to the radiotherapy I had previously initially as it was not something that I had ever heard of before. I have been on thyroxine for over 30 years now and have regular checkups to make sure the dose is the right one still. No issues and I have been fine ever since.
Definitely pays to get your thyroid checked if you have had radiotherapy.
I do hope the thyroxine starts to work soon and you are then you will feel back to normal. It will kick in eventually.
Best wishes
Lyn
Sophie66
Thank you for your reply. That's really interesting that it happened a long time after. Really difficult to trace I would imagine, bit of a shock! I'm glad you've felt fine since.
Can I ask you, since most of my dairy is consumed for breakfast and it says dairy can affect absorption of thyroxine, but that it should be taken in the morning, whether you manage this okay?
So I'm presuming once at a normal level again you get checked every 3 months or so ?
I have never had any issues with consuming dairy while taking thyroxine. I just take the thyroxine half an hour before I eat and then eat my normal breakfast which consists of weet bix with milk, fruit and custard. I also drink a glass of Sustagen made mostly with milk. It does not seem to have had any effect on my thyroxine levels. I get my levels checked around 6 monthly now as my levels have been fairly stable for many years. I was checked 3 monthly initially until my levels were stable.
Lyn
Sophie66
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2026 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007