I was put on 3 month T3 trial by private Endo in August 2019 - 5 mcg twice daily. GP fairly recently said, when I asked about adjustment to Liothyronine "You're on Liothyronine? That's very unfortunate!" No further discussion and call ended. My recent medichecks blood test :
Vit B12 - Active - 94 pmol/L Vit D - 106 nmol/L (R. 50 - 200)
Only suggestion by GP or Endo was I could reduce T4 (because of low TSH 🤨). My feeling is to reduce T4 but increase T3, but I doubt GP or Endo will agree. I lost 1½ stones by end of 2019 (gut problems among other things) but because of Covid restrictions felt unable to find any answers. My hair is so sparse now and various symptoms - itching skin etc. Moan, moan......sorry! So just wondering if anyone has anything similar and can give me a bit of ammunition. Many thanks for reading in any event! This forum is truly a lifeline.
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notpink
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Thanks for swift reply. I'm on 75 mcg Levo and take this with T3 (5 mcg) am, then second dose of T3 about 4.30pm. I did leave 24 hrs between last dose of Levo and blood test and also 12 hrs between T3 and blood test.
In that case there isn't room to increase T3 because it will take your FT3 over the top of the range.
I'm like lalatoot, it took me years to fine tune the doses of both Levo and T3, at one point I was using 32.5mcg T3 but currently only 12.5mcg with my Levo.
With your current results, on combination hormone replacement, it's unusual to have both FT4 andFT3 right at the very top of their ranges. We are all individual and what suits one isn't right for another, some do well with a low in range FT4, I seem to need both FT4 andFT3 around 60-70% through range, so it takes time, patience and a lot of tweaking to find our sweet spot.
If those were my results I'd be reducing Levo, no more that 12.5mcg to start with and see what that does. Retest after 6-8 weeks. Reducing Levo should reduce your FT4 and depending on how much natural conversion you have then your FT3 may reduce as well. It's a case of wait and see what each small change does to how you feel and your results. You may find that a lower dose of Levo (wherever that may end up) lowers your FT3 and you might then need to increase your T3 dose.
Your folate is on the low side, it would be better in double figures. I'd be considering a good quality, bioavailable B Complex such as Thorne Basic B or Igennus Super B. When taking B Complex we should leave this off for 7 days before any blood test as it will give false results.
At your stage it becomes a personal juggling act as to what your instinct tells you and to how you feel. All you can do is make slight changes to one thing and I suggest 12.5 levo or 2 .5 lio are your units of change. Then wait 8 weeks for bloods and take it from there. I know I am not the only one on here who took 2 years of fine adjustments like that to tailor the doses of combo
Thanks Lalatoot. The sticking point for me is, is if I try adjusting T3 without GP knowing, I'm going to use up my prescribed amount before time - then I'm stuck.
Thanks for clarifying. My cognitive aspect is not so good either!! Grateful for the advice re folate. I was below range - GP said it was fine - but I started on weekly liver, etc. which has helped. I will get the supplement you recommended - what a juggling act all this is!
Hi SlowDragon. Yes diagnosed with Hasimotos in 2005 - microsomal antibodies present (titre; 219). Antibodies on recent blood test - all OK. Thanks for concurring with previous replies. Very useful, feel like I'm groping in the dark without any input. I am on GF diet (since April 2019). Will reduce the T4 by 12.5 mcg and order a B supplement to improve the folate and check again in 8 weeks or so. Many thanks.
notpink Sorry to say but you are at the groping in the dark stage! It is only by trial and error using your own judgement that you will get the final tweaks to those doses. Al the best.
Good morning. Yes keep strictly to GF only....occasionally have an ice cream or a square of green & blacks chocolate, but generally am very careful and also avoid dairy.
I’d be quite happy with these blood results! Your vitamin D isn’t optimal (250) so you could consider increasing /supplementing this - but you’ll need vitamin K2 and Mg to support the absorption.
For the benefit of members, 250nmol/L is not optimal, it is a level which increases the risk of Vit D toxicity.
According to the NHS lab which offers Vit D test to the general public, greater than 50nmol/L is adequate but that is generally considered too low, the Vit D Society and Grassroots Health both recommend a level of 100-150nmol/L.
You can see from the results sheet that the NHS uses that anything above 220nmol/L is considered high and increases the risk of toxicity:
I am only on T3..... cant take T4 at all. After being on T4 for so many years my body just rejected it.T4 makes me ill.... dizzy headaches brain fog hair comes out skin terrible. Body just doesnt want to work.
My T3 is Morningside Healthcare - I am in Scotland. I went to a private endo and she immediately agreed I wasn't converting well and wrote to my GP asking for prescription to be dispensed on a 3 month trial, and if they wouldn't prescribe she said she could obtain it from America with a private prescription. Luckily they went with it. Good luck with your endo - it feels very stressful to be in that position.
Hi can I ask what made the private endo agree you didn't convert correctly did they go off T3 test or do a genetic test? And do you pay for them to write the letter to gp on top of a consultation fee how does it work going private and what brand are you being prescribed is the GP prescribing as I thought it was black listed and only and NHS endo was able to write a prescription or is there different rules in Scotland ?
Hello. I took my recent medichecks blood test results with me to the private endo and she listened and prompted me to explain my symptoms. My test results clearly showed I wasn't converting (T4 -23.8 pmol/L (R:12 - 22) and T3 -3.09 (R: 3.1 - 6.8). She wrote to GP with her recommendations - reduction of Levo and adding T3 - 5 mcg twice daily and would they be kind enough to prescribe this. She did say to me she could obtain it from America if GP objected - thankfully that didn't happen. I noticed a huge difference once on T3. It's quite expensive for NHS to purchase, and I think there's only one source in UK so there's little competition to drive price down. So my GP produced the prescription on the authority of the private endo. I was still on a waiting list for an NHS endo. I think the situation varies depending on where you live, not necessarily only Scotland. I remember the private endo saying it was a nightmare in Lanarkshire trying to get them to agree to T3 . Am not sure whether the letter to GP was added to the Endo's fee - probably, and it is expensive but sometimes it's the only way. The brand of T3 I take is Morningside Healthcare. Anyway I hope that helps. A journey ahead
Yes i am in the UK.And had to fight to stay on T3.
I am also taking hormones for endometriosis. So my consultant for this has told my doctor that i have to stay on T3 as it T4 stops the hormones working......
I’m sure I read on here of someone getting an extension to their three month trial because they were still fine tuning their dose. So on moving back to GP prescribing after 6 months they could say with more certainty “this is what I need”.
Hi, I think the point of the trial is to decide if it's of enough benefit to keep you on T3. I have been seeing a NHS endo based in Glasgow and my trial has lasted about two years! I have just had my final telephone appointment with him and he has agreed that I should stay on 100mcg T4 & 20mcg T3 - it took a lot of patience on my part to work with him but he did actually agree to increase T4 after initially decreasing it when adding T3. I think we all have to try to work out what is best for us and try to get doctors to work with us, or as many here do - take on your own treatment and testing. I don't have full symptom relief but my temperature and pulse have normalised & on trying GF diet I have finally been able to start losing some of the massive weight I gained when my thyroid first went crazy. Hope you feel better soon.
Thanks. Glad it's working out for you and I admittedly assumed once past the 3 month trial time and they didn't withdraw T3 it would stay prescribed, so good to hear your experience. Am going to try and get an NHS thyroid blood test at the end of this period of reducing T4, and if they agree to do that, it willl surprise me. The prospect of maybe having to ask for an increase of T3, should it be needed, fills me with dread - all they have appeared to do is focus on the negative TSH figure. That's good you're managing some weight loss - it's a slow process but sounds like you're on the right path.
Whilst you're on the trial they should test your T4 & T3, but it seems NHS labs won't test T3 unless the requester makes it very clear it's an Endocrinologist led trial and needs tested. My bloods have been done several times and the lab ignored the T3 test, which makes a mockery of having a trial! To be completely honest, my endo was fretting about my TSH and I did some meds 'management' to get the numbers where I knew he'd be happy with them 😬 In my final phone consult he finally agreed with me that symptom relief is just as important as the bloods. I think overall it's a lottery and depends on which endo you get, as most of them do seem to be diabetes specialists rather than thyroid specialists. I think you'll need to keep asking for what you need and try to focus on symptom relief when you talk to them.
Yes, communicating with Endos is often difficult because of the way they patronise and infantilise their patients. Favourite thing ever read on here: What's the difference between Endocrinologists and God? God doesn't think they are an Endocrinologist! 😀
I was also aware of if T3 and T4 higher in range most people feel well. However I've not been feeling great....gut problems which can make me feel rough, cognitive problems, ie not finding the right word sometimes. My last visit to chemist she asked me for my address (as they do) and my mind went completely blank for a few minutes. Hair condition is awful and losing it, skin itching, etc. Generally feeling 'down' and tired. Am never sure of what can be tied in with aging (76) and we're all different. A lot is trial and error as I'm finding out.
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