As I know many on here are aware, national guidance via NHS including most recently the Regional Medicines Optimisatoin Committee are advising GP’s that any of their patients on T3 alone or T3/T4 combo should be taken off the T3 and switched to T4 only unless in special circumstances such as the group of patients who report still feeling ill on T4 alone probably due to conversion from T4 to T3 problems.
I began armour thyroid by Dr Skinner back in 1999 and then switched to a T3/T4 combo (100 mcg T4, 20 mcg T3) in 2006 via a NHS endocrinologist which I have been on ever since.
Due to the national guidance my GP is now insisting I need to titrate off the 20 mcg T3 I am taking with my 100mcg T4 and switch to solely T4. Since I have always taken both T4 and T3 first with armour thyroid then as a T3/T4 synthetic combo, I have never known whether my body has a conversion problem. However, I am worried that after 20 years of always taking T3 with the T4 even if initially I didn’t have a conversion problem my body possibly would now be adapted to taking both T3 and T4 and could no longer manage the conversion anyway? Is there a scientific basis for my belief the body may become adapted to not having to make the conversion into T3 after 20 years of supplemental T3?
I would reluctantly perhaps be willing to trial just the T4, but unfortunately I have been bedridden 24/7 for the last 6 years and am very worried with my already poor health and quality of life the switch to T4 mono therapy would be too much for my body and reduce my functioning further which I can’t face. Any advice on how to persuade my GP to let me stay on T3 and T4 even though she is receiving national guidance saying I should try coming off the T3/T4 combo? Many thanks in advance.
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anniekims
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Thanks Seaside Susie, I have the big complication that my severe ME means travel to and attending a hospital appt with an endo via ambulance would be a huge exertion for me, both physically and with the increased sensory input. Basically I risk long term reduction in my functioning to an unbearable quality of life. and so can’t travel to see an endo. Unless I was in a life threatening situation I would not go to hospital. It’s very hard to explain why travel is so risky for someone with severe ME.
I'm afraid I can't answer your question. All I know is that after using T3 in addition to my Levo (self sourced) for 3 years, I wouldn't stop my T3 and go back to how I was when my conversion was poor and I was very unwell. I did also optimise all my nutrient levels and am working on adrenals.
If your conversion was poor 20 years ago, resulting in the need for T3, I can't see how your body would be able to do the conversion now. How are your nutrient levels and adrenals?
Thanks SeasideSusie, sorry I didn’t explain well. When Dr Skinner put me on armour thyroid in 1999 I had not taken any form of thyroid meds before. So I have never experienced clinically whether I feel ok (severe ME aside) thyroid wise just on T4.
Ah, I see. Well, it's a gamble then. You're in a difficult situation, you are very ill as it is, your body is used to the T4/T3 combo and may not take kindly to removing T3.
Do you have latest test results for TSH, FT4 and FT3?
Thank you. Yes, I feel v trapped. It would be so much easier if I could just continue with the T3 and not rock the boat but the dratted National guidance from above is stopping this.
Before I do NHS tests I stop my thyroid meds for a couple of days as I know my TSH is slightly suppressed due to the T3 intake and the nature of my GP would mean she would panic and immediately decrease my thyroid meds if the TSH was suppressed. However, I also pay for the medichecks test when on my standard dose to check I am not on too much. The following medicheck results were from last year:
TSH 0.084 mIU/L - range 0.27 - 4.20
FT4 11.6 pmol/L - range 12.00 - 22.00
FT3 5.74 pmol/L - range 3.10 - 6.80
The medichecks report said I was on too much but I checked my results on here and people said they were fine. Thank you
I think perhaps my only option is to agree to the GP switching me to T4 and if after a couple of months I notice I am feeling much more unwell to source the T3 privately.
The answer to your question is that in no circumstances should you rapidly convert to T4 only, in the event that you are forced to change (which anyway should be resisted at all costs). You are right in thinking that after a long time on T3 your body's working has totally adjusted to this and will not tolerate change. There is a total lack of understanding of the medical world in this matter. Your body is NOT an engine whose fuel you can change just like that, and expect immediate take-up. The enzymes that normally convert T4 to T3 have been suppressed all this time (and probably your TSH from the pituitary) and the system can't be re-geared up even in a reasonable time period.
Thank you Diogenes for confirming after all these years on T3/T4 the enzymes in my body that process the conversion from T4 to T3 will be suppressed and can’t suddenly kick in so any rapid switch would make me feel more ill clinically.
I do plan to resist the change but for the sake of argument in theory should the enzymes eventually kick into gear (presuming no problem) or is there a chance that after all these years the enzymes never will work again however slow the titration off T3? Many thanks.
A vitamin D I did a few months ago was: 68 nmol/L (ref range) 50-200. (From reading on here it seems that I should try to get it to 100nmol/L? I supplement daily.
I had a ferritin test last year which was high: - 197 ug/L - (ref range 13.00 - 150)
I haven’t had a B12 or folate tested for a while.
I have read on here if vitamin levels aren’t optimal the thyroid won’t be working as well. Does this mean thyroid won’t be working at a cellular level even if the thyroid blood test results show levels are fine?
Forgot to add I eat v little gluten but not on a strict gluten free diet. Is the gluten free diet more likely to help those whose thyroid is not working due to hashimotos than those who have low thyroid levels but don’t have hashimotos? Thank you j
Thank you @Slowdragon. Understand need to get B12, Folate, Iron, tested. However, would you be able to answer my question on what is meant by the sentence that the ‘thyroid won’t work without these vitamins being at the optimal levels ‘? Is this saying that even if the blood test results show thyroid levels are ok (as mine do) the thyroid won’t get into the tissues and do their job so the results are misleading?
Appreciate, gluten free has to be done strictly, no half measures. However, again I am trying to understand is gluten free diet more likely to help those who are hypothyroid due to hashimotos? I don’t have hashimotos.
I have had split the T3 in the past, made no difference.
Hi SlowDragon , hope it is ok to tag you again and ask further. Firstly, as it happens I had some bloods taken at home today as requested by my GP. I asked the phlebotomist what the GP had ordered and as well as other things she has asked for B12, Folate, ferritin and Vit D to be tested so I will be getting those results soon. Unfortunately she also tested for thyroid and I was caught out as I usually take 2 days off so my tsh doesn’t come off as slightly suppressed which I know will panic her and not aid in me trying to persuade her to not make me switch to T4 only.
However, unfortunately you didn’t answer two of my questions in my last comment so I hope it’s ok to ask them again Firstly, can I clarify when it is said that the thyroid won’t be working well without the optimal vitamins such as B12, folate etc, does this mean that the thyroid blood test results will show as lower or that the blood test results might deceptively look ok but the thyroid isn’t working optimally as the thyroid in the blood isn’t getting into the tissues?
Secondly, is the gluten free diet most recommended for those who are hypothyroid due to hashimotos? I know I don’t have hashimotos.
I very much doubt you will be able to " just switch to T4 " after having been on T3 + T4 for such a length of time, and in all honesty am angered that your doctor would even suggest such a thing.
I read that only an endo can now prescribe T3 - as to withdrawal, the same should apply.
Where is his compassion in this cost cutting exercise ?
Sorry Pennie I wrote my reply before I saw your second reply. I have sourced T3 from an online website and ordered as back up. However, I would prefer to get it by prescription and under my doctor’s supervision as I know online sites are not without risk.
Thank you. I have a poor relationship with my GP sadly. I have never felt she takes my severe ME seriously. ME is still dismissed by a fair few GP’s due to inappropriate doctor training on the illness. I would hope that the fact I am very ill and have been on some form of T3 for 20 years my GP would understand the risks of me changing to T4 alone.
She did write a year ago to the endocrinologist I used to see before I became too ill to travel about my T4/T3 prescription and his message back was if the patient doesn’t want to change then leave as is. However, yet again she is now saying she wants me to come off.
Maybe they get a bonus for every patient they can intimidate into monotherapy.
I know what you mean, I'm with Graves post RAI 2005 and am four months into self medication with NDT having been refused a trial of T3 because of my suppressed TSH.
It's such a relief knowing I don't have to see my doctor and be treated with disdain because of my blood tests and then made to feel as though I've failed and that is all my fault !
Looking at your bloods - you're not over medicated, are you. xx
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