I did post recently my Blue Horizon bloodtest results to see whether or not you, the more knowledgeable folk, think I needed to reduce, stay the same or increase my dose.
Alas I didn't get a reply on that part of the question so I hope you won't mind me posting again. I have also had GP bloodtests this week (TSH & T4 only) and have been told to reduce my dose to 100mg (I assume he has just looked at the TSH). I can't get an appointment to discuss with him for another 3 weeks so thought I might write a letter instead to save time (if you agree I shouldn't reduce)
I currently take 100 /125 Levo alternate days.
Blue Horizon results....
TSH 0.23 (0.27 - 4.2)
T4 TOTAL 106.7 (64.5 - 142.0)
FREE T4 16.55 (12 - 22)
FREE T3 4.29 (3.1 - 6.8)
GP (NHS RESULTS)
TSH 0.16 (0.35 - 5.5)
FREE T4 14.8 (10.0 - 19.8)
All of my symptoms from last year have subsided (thank goodness), all I have is a lot of muscle and joint pain at the end of the day and when I sleep. Not sure if this is remaining thyroid symptom or something else. I'm going to get that checked out though as other half wonder is it's arthritis.
I assume that my GP is going to say about heart risks with an uber-low TSH. I know somebody else asked today for the link that says otherwise (I am following that post for the link to be given)
So my question is, do you think I should reduce, stay the same (100 / 125 alternate days or ask for an increase?
Thank you...again ☺
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janey1234
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You're FT3 isn't even mid-range. Most people need it up the top of the range to be well. You actually need an increase. And, it doesn't matter how low the TSH goes as long as the Frees are in range.
Thank you @greygoose I am sure the GP is only looking at the TSH. He just told the receptionist to ring me and tell me to reduce to 100. No explanation and if I want to discuss it'll be a few weeks away.
Would you suggest 125 everyday (instead of 100 / 125 alternate days) and a retest in a other 8 weeks time?
And...
On the assumption he says a low TSH will lead to heart problems, do you have the link that I can print out that I can show him?
I'm going to put a letter together to state my case then for an increase.
I am already following MaFerrett who posted the same question yesterday but as yet hasn't had a reply with links. I will post seperately tomorrow with the same question if nobody replies.
Do you have any links that are recommended so that I can learn more please?
My husband think it's arthritis but I'm not convinced and thinking about it I didn't have this pain prior to starting Levo. I had the fatigue, weight gain, terrible brain fog but not pain. Definitely need to look into this further, you may have the answer...thank you x
janey1234 Levo caused me increasingly debilitating fibromyalgia, migraines and CFS. Built up gradually over 20 years. All disappeared, within days,when I stopped T4 for T3 only. (reoccured several times when tried T4 again)
Of course GP's never, to this day, accept that it was the T4 causing it...if they did they would have to do something about T4, like report it! I tried reporting it on the Yellow card system, recently, as I did not know about YCing until recently - not sure when YC introduced.
That said I am now finding I am getting odd leg and feet pain. Which I'm wondering if it is the T3 or the brand of T3 causing it. Always seems to be something!
Good luck and don't let your GP bully you. Refuse to reduce - why should you if you are feeling well? We are all different in our needs. I always felt better with my THS = 0.01 even before T3 only.
Could you see a different GP in the surgery, and sooner?
Thank you for replying. This thyroid lark is a flamin' nightmare...I hate going to my Doc's as it is, let alone having to 'teach' what I have learnt and fighting my corner. I will see how I get 're current dose and take the pain but from there.
It is a nightmare janey1234 but don't be put off. There is help out there and hopefully you will find levels that suit you. And unfortunately it will be a case of knowing your stuff and fighting for what your need. One step at a time.
All the best and happy bank holiday weekend to you too.
just seen your post..you probably wont see this as its 2 yers ago....think im currently in same boat as you with levo...ive just posted for help today....i was really hoping my endo would do a trial of t3 for me but im so dissappointed with the consult...see my post.....may i ask if you get your t3 from gp or self supply.....i never ever wanted to be in this position but im so disillusioned by them all....theyve seen me flounder for 4 years...sorry this is so late and apologies if you dont wish to reply
Hi and yep seeing your reply. I am currently in NHS but they are trying to call me for endo appointment after 9 yrs of stability on T3 mono. I see no need as I know the only reason they are recalling me is to withdraw my T3 and I have no faith in the system that they will accept that 16 yrs on T4 mono, and a further 3 on combiner's - all failing will be enough to leave me on it. They want us all off T3. The NICE draft won't entertain T3.
i hope you don't get the t3 removed...thanks for replying....today this forum has helped me more than an dr has...greygoose has replied to my post and ifeel a bit braver asking this awful endo about T3
Hope you see this Are you still on T3? I am I U.K. and just on T3 but endro doesn’t want me on it, levo causes palpitations for me, just wondering how you got on
I thought I’d replied to you earlier but the whole thing must have dropped. Short response - cos not writing it all again😀 Stick to your guns re your T3. Ask your endo for a written account of his reasoning and justification for wanting to stop your T3? I thought there was something that said they can’t just stop it. I didn’t think you had to agree to change meds if a) stable and b) no valid reason.
An endo responded to my GP saying to stop it after I was on it so long might cause problems.
Would your endo be willing to commit, in writing, to being held responsible for adverse effects on your health caused by stopping your T3?
What alternative is he possibly suggesting if T4 causes you palpitations?
Ask for all his reasoning and justifications, treatment plans, and confirmation of his responsibility, and any evidence to back up his proposal, so that you can examine it (with your solicitor! LOL) and to allow you to make an informed decision.
Yes I am still on T3. Not impressed with the endo, not met him but Jekyll and Hyde. Will not be seeing him if I don’t have to. He did agree to leave me on T3 for now, two years ago. 2 end’s since 2018 left me on it. I’m hoping that counts for something should an argument arise.
Based on free T4, I'd ask for an increase. You might want to shpow your doctor a copy of the Drt Toft Pulse article explaining that some people need suppressed TSH and even over range Ft4 to feel well. You can get it from louise.roberts@thyroiduk.org.uk
I think when a GP sees suppressed tsh ,his immediate concern is not for you having a heart attack ,it is that if he leaves you there , with a tsh lower than the NHS recommendations , if you have a heart attack due to any other cause, bang goes the years spent in medical school. 😉
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Blood test results. Endo wants to reduce t4
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Dose adjustment - thyroxine. 
