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 😆
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Abi-Abster
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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. "
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!
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.
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....
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
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!
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.
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.
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'😆
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 🤗
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