Coming off suppression dose thyroxine after 5 years

Hello, long time no see. 

Have you had your vitamin D checked recently? When my vit D wasn't supplemented, I had a lot of bone and muscle aches which cleared up well with Vit D tablets.
Another thing that's also sometimes low (though I've not had this myself) is Vit B12. People report that being a supplement that can help if you are deficient.

Otherwise, you could ask your doc if you can adjust with 150 and 125 on alternating days until things stabilise again and then go onto the 125 dose afterwards - but do please speak to your doctor. 

I'm 11 years out now from my diagnosis - anniversary next week - and I am happier not being so suppressed as I was way back in the early days. My FT4 has never been within the so-called 'normal' range but was pretty shocking when I was TSH suppressed. 

Hey, thanks for your reply. I must admit I agree about the supplements and think I am low on vitamin D.

I will contact my doctor. There are benefits to the lower dose and very happy with how much easier it is to get to sleep and stay asleep. Maybe my tiredness is my body just enjoying all the better quality sleep.

Congratulations on your anniversary, very lovely to hear this news

with kindest regards

Helen

Hi

My period of heavy suppression was only 12 months but sleep quality was poor. It does seem to take time to adjust as I started on 175mcg and in 3 months went to 150mcg. My TSH has always been below 0.01 and even though the oncologist has since made cautious reductions each 8 weeks and I am now on 125mcg my sleep quality is still poor and TSH remains suppressed. I too have periods of exhaustion and I am sorry to hear of your muscle aches. Oncologist assures me that an increased TSH will help with sleep quality but it appears to be taking time. I take Vit D supplements daily. I wish you well for future and hope you get to a settled dose before you are discharged.

Hey Barbaral,

I have never had my vitamin D levels tested and my consultant hasn’t ever suggested this. Is this a standard need for us to have them checked and possibly take supplements? 

Lydia x

It's not a standard test for thyroid cancer so it wouldn't be done unless you had symptoms of deficiency or insufficiency. Most typically, that's bone ache.

That said, the NHS guideline is that it wouldn't be a bad thing if we all - regardless of thyroid cancer - took vitamin D tablets, especially in the autumn and winter. 

https://www.nhs.uk/conditions/vitamins-and-minerals/vitamin-d/

There are studies that show it's not unusual for people without a thyroid to have vitamin D deficiency - but that's not rocket science since a lot of 'normal' people also tend to not have enough.

When I got tested the first time, I was well below the 'normal' range - so I was put on a 3 month boost of high dose and then I've been taking a 1000iU dose ever since. 

GPs are a bit reluctant to test - I believe it's one of the more expensive blood tests - but if you have the symptoms, they should agree to it. My GP - and most others, I believe - won't prescribe Vit D anymore but you can buy on Amazon at around £10-15 to last you for a year. 

I also believe that Vit D has helped a lot of people to avoid the worst Covid symptoms. My husband was very ill and got hospitalised. He gave it to me and I just spent a week in bed feeling blergh. I take daily Vit D - he didn't (but he does now!). It may also be implicated in the higher death rates amongst the BAME community where Vit D deficiency is particularly prevalent.

But, back to your question, if you don't have achey bones, you don't need to worry but NHS support Vit D supplementation.