Guidelines: Hi I'm wondering if there are... - Thyroid UK

Thyroid UK

137,936 members • 161,765 posts

Guidelines

I'm wondering if there are guidelines in the UK regarding TSH numbers by which a doctor is advised treatment should be an option?

I did my first private blood test in 2017 and the doctors remarks were to see my GP regarding treatment for an underactive thyroid. I was so pleased to finally have clarification that my symptoms weren't just down to my Fibro or Narcolepsy.

TSH 5.7mIU/L FT4 10.12pmol/L

My doctor unfortunately didn't agree though and was annoyed I had done private tests. he did his own and decided I was fine. He said my thyroid levels were fine and that my vit D levels at 38.5nmol/L was not deficient and that deficiency rarely occurs. He put my thyroid symptoms down to fibro and narcolepsy.

I sourced Thiroyd NDT myself and 2 years later my TSH levels had dropped drastically, then came the 100% increase in NDT and a lack of availabilty.

TSH 2.54 mIU/L FT3 3.86pmol/L

In 2021 my TSH was again high and I was feeling so bad. Depression had really set in because I just can't get this doctor to take me seriously. I cannot change doctor as I am out the catchment area and my surgery only has the one doctor. So I struggled on feeling worse and worse.

TSH 7.16mIU/L FT4 12pmol/L FT3 15.7KIU/L T4 100nmol/L TgAB 18.9Ku/L

I have just taken another private test and my TSH is again higher than it should be and I am feeling totally and completely fed up and depressed.

TSH 7.35mIU/L FT4 12.6pmol/L FT34.75pmol/L

On the one hand I feel I could just look at buying treatment myself but on the other hand I feel I need a doctor to help with this. NDT is out of my price range now but I could get Eltroxin or even try Metavive 2 but I don't know where to start anymore, I can't even think straight.

Going to the doctor leaves me with high anxiety. Thyroid issues are not the only thing he has let me down on. He literally blames everything on fibro and narcolepsy. I'm considering sending him an email and downright asking him if there's even any point in me seeing him if he feels he won't take this seriously but I want to have some info first so that I can at least know what guidelines are in place in the UK.

Can anyone offer any advice please?

Written by

Linac

To view profiles and participate in discussions please or .

Read more about...

4 Replies

•

J9721 year ago

Hi Linac,

I’ve pasted what I think is the relevant section from the NICE guidelines on treating subclinical hypothyroidism. As your TSH has recently crept up to what I assume is above range on 2 occasions AND you’re symptomatic, you should in theory be given a trial of Levothyroxine. However! Since you’ve tested privately and your GP appears to have a problem with your right to do that (!!), you’re going to have to be insistent that he/she carries out their own tests. Go to the appointment prepped and armed with the NICE guidelines. You’ve clearly benefited from treating your thyroid condition in the past but, as you quite rightly point out, why should you continue to struggle on, self-medicating using an unregulated and increasingly expensive product from overseas (for info, I’m doing just that)?

Others will be here soon I expect to highlight the importance of optimising particular vitamins and minerals; this is also something that your GP should test.

Good luck.

nice.org.uk/guidance/ng145/...