Would I be better reducing T4 currently 100mg rather than T3?
Since getting a script for T3 nearly two years ago it has changed my health( life) for the better.
I recently, 3 mths ago went gluten free and again seems to have improved other autoimmune issues so hoping when I check my bloods in a couple of months time I will have reduced antibodies..
I had the dreaded endo appointment earlier this month. My usual endo had taken a day off with no mention to patients and so was met by another. He had read my notes .. blood results from last May and on the strength of suppressed TSH wanted to reduce T3. Thankfully I persuaded him to only reduce by 5% I now have to chop the 20mg tablet in 4 and take the 15 mg but this is less than accurate of course??
My results when last posting in Nov are:-
B12 349..... 197 - 771
Vit D 64 .... 50 - 200
T4 85......... 58 -154
TSH <0.01.. 27 - 4.2
Free T4 16.. 12 - 22
Free T3 6.3. 3.1 - 6.8
Thyroid antibodies
Thyroglobulin 317... 0 - 115
Peroxide’s anti 97.6 0 - 34
folate 5.3 range just says >2.9
Ferritin 163. Range 23 - 150.
Endo says very worried re heart/stroke
Did not really want to listen as to how T3 had improved quality of my life. Had made up his mind before I arrived really and so appointment was not a conversation about me but about the side effects and that everybody would feel good on T3 ?
I am so tired of having to present a case and try to win over people in a position of power in a ten min appointment. There is no continuity no matter how hard you try to see the same doc/endo.
Sorry this is long
Any thoughts re suppressed TSH solution gratefully received
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Tayhung
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I had the same problem. I’ve never seen the same endo twice. After getting a good result with the one I saw in September, I got a different one in January. (He said the other endo was on leave) I just couldn’t be bothered starting again explaining everything and he was fixated on the suppressed tsh unlike the first one. I reminded him about the feedback loop and showed him the pulse article by Dr Toft which clearly states that a suppressed tsh is not harmful as long as the fT4 and fT3 are within range.
As mine were in range he agreed not to mess with my dose. If I don’t get the other endo next time I go I think I’ll discharge myself and manage myself.
As far as I can see your results are just right. Very similar to mine. I feel great now. How are you feeling?
Yes. On the 20mg have not felt better in years. I was dutiful and reduced by the 5mg and seem to be sleeping more and and a bit less motivated (could be the weather ha) already even though only two weeks
T4 made scant difference to my symptoms. Thanks for reassurance Maggie. He did scare me with talk of stroke!! So am worried
Yes, i really think you should stand your ground and say you want the 20mcg T3 - especially because you’re already feeling the effect of the reduction. Have you got enough T3 to go back on 20mcg now?
Yes I have, I always keep a reserve. I am definitely going back to 20 mg. I may just have to self medicate and knock endo on head. How do you manage your GP if your TSH is so suppressed. They do tend to freak out..
My GP is great. I give her lots of bedtime reading each time I go and she’s very receptive to it. When I showed her my DIO2 result and the letter from the endo saying I felt better with T3, she was printing off the prescription before I’d finished talking. She said I’d been ill for far too long and it was about time I got some support.
It's so easy for them to make us scared. I have been too dutiful in the past because I don't have a medical or scientific background. Now I know a lot more about how thyroid hormone works I feel more confident and empowered about making my own decisions.
The doctors are always conscious of people suing for negligence etc. So They are constrained to practice within current guidelines based on research. Most research is driven by pharmaceutical firms wanting to develop profit making drugs. In the case of the NHS research may reflect money saving factors. They are not researching the factors that are important to us. Therefore the research is skewed to industries' priorities.
If those were my results, so long as my FT4 nd FT3 were in range I wouldn't be concerned. TSH is a pituitary hormone and if it's low it's because your body has enough thyroid hormone so it doesn't need to signal.
If a person is not in thyroid hormone medicine then TSH has to keep signalling to some extent to keep the supply of T3 flowing. If on thyroid meds then if T3 is plentiful TSH can rest.
I think they just make a point of saying we'll get heart disease so it goes on record and there's no come back on them years later because there is not enough modern research on long term effects of suppressed TSH for the medics to feel confident on their advice. Apparently people took much higher doses of hormone before the 1970's and I haven't heard of any research that proved it was harmful. So in the end we have to make up our own minds. We are rather disadvantaged in this as we don't all have a medical or scientific background. Also we are often very unwell when having to learn and read about Thyroid disease.
I've decided I'd rather be well for the life I have left, I want to enjoy my life rather than satisfy the medics. At the end of the day the choice is yours. I wonder what the Endo would choose if he found he felt well when TSH was suppressed and unwell when it rose?
Thanks for your reply Nanaedeke. Very informative. Your thoughts reflect how I feel. Quality over quantity definitely.
I was so unwell for such a long time I just can’t go back there. I was made to feel a bit trivial. As if I was taking T3 for a high or something. He said that if he, who is not hypo took T3 he would feel good too? Not sure what that was about?
Well, I think that's a silly response from your Endo, has he tried it? It would probably give him anxiety if he didn't need it so I doubt it would make him feel good but how does he know if he hasn't tried it for a few months?
Has your Endo told you that the quality of levothyroxine in the UK was severely compromised until after 2013? It was probably T3 that saved you from years of ill health on the poor quality levothyroxine that was being prescribed by the NHS to patients in the UK.
In fact TEVA manufacturers has their licence withdrawn but none of the levothyroxines in the UK were bioequivalent and neither were they reliably giving the amount of levothyroxine stated on the packaging. The information is on the internet see link below. I wonder what your Endo thinks of the fact that patients were made ill by the poor quality of meds?
Instead of making you feel it is trivial, he should acknowledge that it's not always simple to treat thyroid conditions and the medicines prescribed have not been good in the past and there is no guarantee that manufacturers are maintaining the quality as they should. I doubt the MHRA (the regulators) have the time to check every batch from all 4 manufacturers of levothyroxine.
Also, who knows which other drugs interact with thyroid meds so if you need to take antibiotics or some other medicine, then without T3 you simply may not get enough thyroid hormone.
I think the last faulty formulations were cleared off the shelves in 2015. However, people have still reported problems with the reformulated version of TEVA which the MHRA have approved for release and is now on the market. Just need to be vigilant and stick to what suits you.
I don't think they do know why some patients respond to T3 but I think there are a variety of factors and it might not be the same reason for everyone. The point is that T3 is potent and critical for function. Without enough we can't thrive.
You feel like saying why doesn't some interested bod try to find out why some patients respond to T3. It is beyond belief that we seem to be in the stone age era of thyroid meds, research and specialised understanding. No doubt the 'body' that has a vested interest in keeping us ill just adores the state of 'we don't really know why ......'
Thanks. I don’t want to go back to how I was for sure. It is just this heart /stroke issue that scared me a bit. He did stress the risk? And he said osteoporosis is a problem too?
My heart is fine and last bone density two years ago normal ?
Throws you a bit. And they are supposed to be the experts in a caring profession. It stops the discussion dead as you have to then research and wait 6mths for next appointment to present your case, that is of course if you ever see that person again!!
Soul destroying, especially if the changes or not changing makes you ill? Sigh.
Ask for proof supressed TSH causes heart problems... Grrrrr if they're Going to try scare tactics they could at least try to get their facts right! There IS research that seems to indicate that prolonged high FT3 can possibly cause atrial fibrillation and or osteoporosis. Not supressed TSH. It's your health and personally I wouldn't let an ill informed ***** make my health worse. There us no reason to reduce t3 going by thse results.
Your B12 is too low, needs to be nearer 1000
Ferritin a bit high... Do you supplement iron ? If not you need iron status test. If you do stop for a while till ferritin 80-100 ish
Vitamin d is too low, needs to be 100 plus.
SeasideSusie has fantastic advice on supplements you should check out her posts 🙂 my brain is so foggy today I have in chance writing all the info correctly 😊
Ah. Thanks Linda. That makes sense. My T3 is well in range and T4 is still lowish so that shouldn’t be an issue. Wish I could keep everything in order when I am in gps office. Going armed with paperwork next time.
I will up my D3 and B12. Never supplement iron but ferritin consistently high.
I feel a bit better now as only 20mg so not a prolonged high dose I would think.
The dose isn't a problem, you need what you need, it's over range ft3 in the blood tests... Example range 3.8-6.8 and your ft3 was constantly say 8 or 10. No idea how much over range I'm afraid. "sigh' if foggy brain would clear 🙄
Makes the endo visit even more of a waste of time! Thanks for clarifying Linda . Hope you feel better soon. Makes it hard work when you have to consciously think harder
Yes, if it were me I would reduce T4 and not T3. You might even benefit from reducing T4. You must not be a good converter if you are taking T3? If that is the case, you probably have a higher than average rT3, which would indicate that relying on T4 for any decent conversion is a game of diminishing returns.
Yes. If I am not converting what is the point of continuing T4? Because you can’t have a decent conversation with endos and always on the Back foot make me scared to suggest alternatives
Endos are terrible mostly. GPs also. My GP told me I would get cardiomyopathy and osteoporosis because my tsh was suppressed and my fT4 was at the top of the range. My fT3 was still at the bottom of the range mind you. My endo (who is not too terrible) laughed and said, 'That's interesting...' And then she prescribed NDT. Don't let them scare you.
Some of us convert less well than others but we all convert. The addition of T3 overcomes the lack of conversion and can improve your conversion of T4 to T3 too. If you stop taking 100mcg T4 you will be very undermedicated on 20mcg T3 which will be proof that you do have some T4 to T3 conversion.
I did have a Gp who mentioned she was surprised I took both as, according to her or is one or the other. Think I am going to insist I stay as I am. For now.
Sorry for the scare. My GP did the same when T3 was slightly above the middle range. I told myself since he knew so little about the thyroid, why believe what he said about strokes & heart attacks He threatened not to renew T3 Rx. No problem. I'll medicate myself.
Ha. I did the same G2G2. My consession was to try the reduction of 5mg but , did say that though I preferred to be looked after by the medical profession if he were to stop my T3 I would self medicate.
I am feeling much more reassured after all the helpful replies. x
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He threatened not to renew T3 Rx. No problem. I'll medicate myself.
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