Hi folks,
I haven't posted on this forum for some years. I am now 10 years on from two hemithyroidectomy surgeries and radioiodine therapy for Stage 2 follicular thyroid cancer diagnosed in 2016. I worked my way up to taking 150 ug daily levothyroxine after treatment and have been taking that dose for 9-9.5 years.
I now live in a different NHS board from where I received treatment, and I'm in the process of being discharged from my annual surgery and consultant follow-up appointments back to my GP. I saw my surgeon earlier this year, who discharged me, but did not include my latest results in their letter to my GP.
This meant my GP didn't have an up to date blood test on file and so they requested one after I filed a repeat prescription in May.
The returned test suggested my TSH was below the advised target range (0.1 when it should be 0.2-2), which was confirmed by a repeat test in July, with my GP and consultant recommending I reduce my dosage. I have been alternating 125 and 150 ug for three weeks as they advised.
Until recently I was of the understanding total TSH suppression was the goal as part of tricking my brain into thinking I have a functioning thyroid, but my GP and current consultant advised that's now seen as overtreatment for someone like me this far on from diagnosis.
I had a busy start to August but I am still feeling more fatigued than I would expect to be at this time of year, particularly in the morning. I have GP appointments and repeat bloods scheduled over the next few weeks to see if things even out after a couple of months but I must say I'm quite frustrated about this change being inflicted on me by my GP and the impact it's having on my mood and energy, at a time when my cancer admin should be becoming more streamlined.
Has anyone else experienced a change to their thyroxine dose, specifically a reduction, at this stage of follow-up, and how have you navigated it? I've found it very unsettling and would appreciate some advice. Thank you.
Hi Fiona3108
I am one of MacMillan’s community champions, usually looking at posts on the various breast cancer forums. I don’t have thyroid cancer but my treatment with immunotherapy in 2023 damaged my thyroid function and I will need to take levothyroxine for life. I noticed you hadn’t had a response so far so I thought it might be helpful to share my experience.
My thyroid function disappeared overnight thanks to an immunotherapy related adverse event that also damaged my kidneys and lungs. I was an emergency hospital admission. The kidneys were the primary concern but my thyroid issue was picked up as soon as they had blood test results back. They started me on 125 mcg of levothyroxine a day and I went down and then back up, eventually settling on 100 a day. My TSH stays in the recommended range on this, which is I think between 0.27 and 4.2 mlU/L. No one has ever told me I need total TSH suppression. Each dosage change produced issues which I found took some time to settle but I think I am now on a stable dose for life.
I do feel fatigue from time to time but don’t know whether it’s related in any way. I have also had subtle but steady weight gain during the time I have been on it, which I am currently trying to reverse. I try to take my levothyroxine at exactly the same time each day (7am) and wait at least 30 mins and preferably 60mins before have breakfast, tea or coffee.
My pharmacy seems to vary the brands quite a lot. I had a packet recently from a brand I had not had before and I noticed the fatigue was a lot worse. The people on my breast cancer pages who are ion hormone treatments make similar comments about certain brands. If the change in dosage has brought in a new to you brand, that might be worth considering
I think any change is unsettling but things may stabilise.
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