Docs want to reduce my T4 Levothyroxine. Are they right to do so?

[ChronicTonic]

I am currently taking 125mcg T4, and 18.75mcg T3 split into two daily doses (overall, 2/3 of a 25mcg tablet of T3).

Bloods from last week:

Free T4: 9-19 pmol/L

June 2023: 12.2 pmol/L

[June 2022: 12.9 pmol/L

March 2022: 13.4 pmol/L]

TSH: 0.35-4.94 mu/L

June 2023: <0.03 mu/L

[Also <0.03 mu/L on June 2022 & March 2022]

I just received this text from my GP surgery:

“Your recent bloods are showing your current dose of levothyroxine is too high.

Please stop taking the 25mcg tablet and just take 100mcg per day.

Please repeat your blood test in 2 months time to monitor.

Thank you, Clinical Admin Team”

Are they correct? I don’t feel hyperthyroid; I feel perfectly OK (in my general chronic unwellness, I mean)!

As it is, a year or so ago the surgery told me to lower my T3 dose, and they increased my T4 from 100mcg to 125mcg to compensate.

I feel OK on the 125mcg and I’m concerned that if I drop back down to 100mcg I’ll feel hypothyroid - especially if I don’t increase the T3 back up.

I followed all the usual protocol advice on this forum when these bloods were taken. I don’t have £30+ to spend on private and more thorough thyroid function tests, even though I know I need them, so these NHS tests are all I have to go on. Thanks for your understanding 😃

Unfortunately, I don’t have many 25mcg pills left in my current prescription to ignore the doctors for very long.

What should I do? Please advise.

Edit: remembered to include bloods from GP 😆

[GlowCoach Administrator]

Your GP is not allowed to stop your prescription of T3, it has to come from an NHS Endocrinologist.

I am assuming that they are going on TSH alone but can you get a copy of these results and post them here?

You can take responsibility for your blood results as per NICE guidelines.

The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :

nice.org.uk/guidance/ng145

"Your responsibility”

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "

[ChronicTonic in reply to GlowCoach]

Thanks  GlowCoach for your reply 😃

It’s the Levothyroxine/ T4 the doctors want to reduce this time, from 125mcg to 100mcg.

I self-prescribe T3 with the help of this forum and haven’t yet found a supportive NHS endocrinologist (well I did, but then he left before anything was implemented - and this was a few years ago). So the hunt continues for someone sympathetic!

The GPs are just asking to reduce the T4 this time, thankfully. But still - I need to know if they’re right to want to do so!

[GlowCoach Administrator in reply to ChronicTonic]

So you need to get a copy of the blood results and post them with ranges.

The NICE guidelines info still works for this if necessary.

[ChronicTonic in reply to GlowCoach]

Absolutely. Thank you. Whether they bl00dy listen is another thing entirely. Ha!

These were the results I forgot to include above:

Free T4: 9-19 pmol/L

June 2023: 12.2 pmol/L

TSH: 0.35-4.94 mu/L

June 2023: <0.03 mu/L

They didn’t test for FT3 etc, annoyingly.

[GlowCoach Administrator in reply to ChronicTonic]

So your FT4 is getting close to being on the floor at 32% of its range. They haven't tested FT3 and are simply going by your TSH which is suppressed due to taking T3.

I know I'm also likely to be having this particularly unpleasant struggle myself this year even though my T3 is via a private Endo, my NHS GP is still going to go into orbit when they see my TSH in black and white on an NHS blood test.

You have the option of telling your GP why your TSH is low due to taking T3.

You can also quote the part of the NICE guidelines I stated earlier and take resposibility for your results.

I can only imagine that you are not especially well given your low FT4 result and not even knowing your FT3 result but get yourself armed with information from here and counter their arguements and stand up for yourself. Also insist on an FT3 test.

[waveylines in reply to ChronicTonic]

Ask your GP Surgery for a copy of the actual blood test results. You are entitled to them. Given you are on a combination of thyroid meds they should've tested TSH, Ft4 & Ft3. Then post results on here with ranges (in brackets) .By the way sending a text is not a consultation. No GP should be altering your medication without an appointment with you to discuss.

I've just complained about mine doing the very same thing. Ended up with GP ringing me & my current dose being maintained. So you don't have to accept this appalling way of managing your medical needs. Not good enough of them....

[ChronicTonic in reply to waveylines]

waveylines I thought a text was a bit abrupt!

These were my results. Just completely forgot to include them with my original post 🙄

Free T4: 9-19 pmol/L

June 2023: 12.2 pmol/L

TSH: 0.35-4.94 mu/L

June 2023: <0.03 mu/L

Good to know you were able to push back. Thanks for the encouragement! 😃

[waveylines in reply to ChronicTonic]

Sorry Abi-Abster wasn't intended to be. 🙏Your GP has gone on the TSH result. (they are taught do this) Because you are on T3 your TSH will be suppressed.

You need to ask for an appointment so you can point out to your GP that your Ft4 is well in range and thats what the levothyroxine consists of T4. That a suppressed TSH is normal for anyone on combination thyroid medication.

You definately don't need to lower your levothyroxine. Poor you. Fingers crossed for you. Xx

[DippyDame]

Can you please post the labs this decision was based on?

Does your GP know you are still taking T3.....it will skew your labs...lowering FT4 and TSH?

[ChronicTonic in reply to DippyDame]

My results were as follows. Just plain forgot to include them above! 😆

Free T4: 9-19 pmol/L

June 2023: 12.2 pmol/L

TSH: 0.35-4.94 mu/L

June 2023: <0.03 mu/L

Yes, they know I’m still taking T3, as they can see from my surpressed TSH.

They wouldn’t test FT3 or T3 or anything and I can’t afford to pay for private bloods at the moment 😔 Frustrating!

[DippyDame in reply to ChronicTonic]

"Your recent bloods are showing your current dose of levothyroxine is too high."

It absolutely is not!

Rediculous decision....if you feel well refuse to have dose altered

Ask them to explain how, when FT4 is only 32% through the ref range, the levo dose is too high

Also, ask why ,when they know you take T3, they are refusing to test FT3

And woe betide them if they say T3 doesn't matter!!

The decision is supposed to be a joint one between patient and medic....not a dictatorship via a curt text.

" Work in partnership with patient"

gmc-uk.org/ethical-guidance....

[ChronicTonic in reply to DippyDame]

Precisely DippyDame - the curt text as you put it, has really annoyed me. Imagine if I didn’t have you guys as a helpful resource. I probably wouldn’t even question it, and yet it would affect me greatly!

Thank you for your input. Useful to have FT4 percentage to argue my case!

[Imaaan]

Free t3 result would be helpful for sure but I can understand when you're on a tight budget. I had a similar experience last year with my family doctor. My TSH dropped with ndt and I was nowhere near optimal . I told her I didnt want to reduce my meds and with the help of family went to see a naturopath that was comfortable working with a low TSH.

[ChronicTonic in reply to Imaaan]

Interesting Imaaan ! Glad you found someone to help.

Yes FT3 would be useful but of course the NHS doesn’t check for that 🙄

I used to be sneakily scribble on extra tests on the old written blood request sheets, but now the GPs print them I can’t. Argh!

[Imaaan in reply to ChronicTonic]

I did that for several yrs as well when they refused to test the free t3. I made sure it was a walk in clinic and they had multiple doctors working. The doctors printed them as well and I still wrote it down. I'm law abiding but when you're sick and desperate you'll do almost anything.

I'm wishing you all the best .

[ChronicTonic in reply to Imaaan]

Exactly! I haven’t had the balls to write on a printed phlebotomy request. Maybe I should?!

[TiggerMe Ambassador]

Ring them and say 'NO I don't agree to a reduction, please leave me as I am thank you', they tried this one on me a few weeks ago, they cough and splutter a bit and then put on your notes 'that you refused their advice, and refer you back to Endo'😆

They shouldn't be meddling 🙄

[ChronicTonic in reply to TiggerMe]

Thank you for your concise response. I’ll try not to crumble next time I speak to them! 😬

[TiggerMe Ambassador in reply to ChronicTonic]

You'll be great honestly... once that word comes out of your mouth they backdown.

If it helps make a note of what you want to say and just read your lines, I found that really helpful to start with... now I question everything with them all the time 😅

If you have spent even an hour on this forum you are far more up to speed than them 🤗

[pennyannie]

Hey there Abi-Abster :

I believe this just a knee jerk reaction to the TSH reading since your T4 isn't even 50% through the range -

absolutely ridiculous -

does the surgery know you self source T3 and that T3 suppresses the TSH ?

[ChronicTonic in reply to pennyannie]

Now I’ve stopped panicking (Nooooo! Don’t take away my thyroid mediciiiiiine!) I couldn’t agree more about the knee-jerk reaction. Well said.

They do know about the T3 - I’m guessing the aforementioned Clinical Admin Team (whoooo?!?!) haven’t actually read my notes 🙄