GP looking to reduce Levo

[Tristy]

My GP wanted to see my most recent thyroid blood test results which I did privately last October. This was when I had finally found my optimum dose - 125mcg Levo and 12.5mcg T3 daily. I have felt really healthy since then and am loathed for anything to be changed.

She now wants me to have an NHS blood test as she thinks my TSH is too low. I know my TSH only became suppressed when I started taking T3 so I’m planning on not taking that for a couple of days before the test. Should I not take it for longer?

Results in October as below:

THYROID STIMULATING HORMONE *0.018 mIU/L (0.27 - 4.20)

FREE THYROXINE 15.900 (12.0-22.0)

FREE T3 5.36 (3.10-6.80)

I have fought my case but she is fixated on the TSH level as usual.

Any advice would be appreciated.

[SlowDragon Administrator]

TSH is unlikely to respond quickly, if at all

Insist on referral to an endocrinologist BEFORE you will consider reducing dose

Your FT4 and FT3 are well within range

Presumably you have Hashimoto's?

Are you on strictly gluten free diet

Are your vitamin levels optimal

Suggest you get FULL Thyroid and vitamin testing privately again

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

If/when also on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Roughly where in the uK are you. You may need to see T3 friendly endocrinologist. Email Dionne at Thyroid Uk for list of recommended thyroid specialists

Also consider DIO2 gene test as proof you need T3

thyroiduk.org.uk/tuk/testin...

[Tristy in reply to SlowDragon]

Hi SlowDragon, thanks for replying.. Yes I have Hashimotos, all my vitamins are optimal and I am strictly gluten-free. I live in Surrey so will look into a T3 friendly endocrinologist. I was hoping for a short appointment, I was with my GP for 20 minutes whilst she was questioning everything, very frustrating.

[SlowDragon Administrator in reply to Tristy]

My TSH is similarly low.....the difference is I am under care of endo so GP feels ok

But I still worried about annual review

However she was so astonished and delighted at my transformation.

I always take in my private Full Thyroid and vitamin results (haven't had NHS test in years)

Plus 2 or 3 weekly Fitbit summaries that clearly show I have low resting heart rate (56-57) despite very low TSH

I have Hashimoto's, gluten intolerant and Heterozygous DIO2 - more on my profile

[Tristy in reply to SlowDragon]

Thanks SlowDragon, I am sure my GP would be fine about it if I was under an endocrinologist who was supportive so if she insists on reducing it I might have to try and find a T3 friendly one. All this time spent on me when I’m actually feeling well, it’s ridiculous.

[Aurealis]

Hi Tristy. I think that your own words say it clearly -

‘I have felt really healthy ... I am loathed for anything to be changed’.

What a good doctor she is to have restored your health!

It could be helpful to have a test done while you feel really well, as the results may show you the free T3 and free T4 levels at which you feel well.

But never change the dose if you feel well. Challenge the reliability of the test, demand a retest in a few months time, whatever. The test is there to support your decision making. That’s all.

Slowdragon has given you lots of good advice. I also don’t think it will make any difference if you leave T3 off before the test.

I’m afraid that when you get hypothyroidism you have to be assertive with your GP or they will ruin your life. They’re there to advise you that’s all, you don’t have to do what they suggest. Good luck.

[Tristy in reply to Aurealis]

Thanks for your reply Aurealis. I know I will have to be very emphatic. I just find it so odd that we have to jump through so many hoops even when we have regained our health.

[m7-cola in reply to Tristy]

I think that doctors like this are less interested in patients’ health than whether the test results are ‘in range’.

What folly!!

[joiaz]

Hi Tristy - I’ve recently managed to get my GPs to agree that I no longer have to have the annual thyroid function blood test each year, and will go by signs and symptoms instead. I now have this on my file.

This is to avoid me having to have that conversation about lowering / dosing according to the dreaded TSH test etc. Like you, I happen to be fine on the dose I’m on.

I set out my reasons in a letter, e.g. my responsibility; informed decision; risks and benefits; patient choice etc - this covers the doctors’ backs. Why the TSH is useless / versus the T3 test; suppressed TSH; the importance of treating patients’ signs and symptoms / not the numbers; optimum vs in range, and some references that support this.

I also attached a tick box form that records my signs and symptoms, in lieu of the blood test. Or as well as – so if I decide to have a blood test, my symptoms / I will still decide the dose.

You can see a blurry image of the signs and symptoms form here

healthunlocked.com/thyroidu....

Or you can view a high quality image on tpauk.com/forum/threads/sou... - though you may have to sign up as a member.

If you like, I can send you my letter (I’d have to email it to you) - which you can adapt. And a pdf of the symptoms form.

---

You’d have to add a line about how taking T3 affect the numbers (compared to Levo alone). And probably cite some other, heftier references / papers.

[Tristy in reply to joiaz]

Hi joiaz, thank you for your reply. I have been out today so just read it. I will have a closer look tomorrow. I will also message you my email if you wouldn’t mind sending me your letter. Thanks again.