Following my last blood results my GP referred me to an Endo who in the first appointment last month suggested I might benefit from T3 (great potentially!)
I was at the time feeling a bit of chest tightness so he reduced my levo down from 150mcg to 125mcg, and sent me off for a retest in a month which i've just done.
My symptoms have been a lot worse though (pain in hands, hip ache, pins and needles, tired, trouble swallowing tablets (is that a thing??!)...but the bloods don't look so much worse.
And i am pleased my vitamins are looking great. I am going to reduce my vitamin D and b vitamins to try to keep them stable now. I don't have updated iron but have asked for it.
I got TPO antibodies tested which are negative (i think that's what the report suggests) but i had Graves originally (I am now post RAI) so is this right, they can disappear? does this mean i don't need to worry quite so much about gluten avoidance?
Any help or thoughts welcome in advance of my appointment. I was thinking i could do with slight levo increase, or is this a good place to go from to add T3 in?
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Yes I have (I’m the one with the medichecks investigation) it looked okay tbh. I’ve been on chicken liver since December so really hoping it will be higher in next test. (Altho medichecks already says it’s higher).
Quite alright. You must reply to so many people on here!
Yes ok I will have that in mind. I think if I was going to be on levo only I would certainly want to go back up, if not to 150mcg at least to 137.5mcg. I really feel like I can sense a deterioration in how I feel in this latest reduction. I never had such bad hand pain or pins and needles before.
Your vitamins are better than mine when I was given an NHS T3 trial, so it is comparatively reasonable, but wiser minds than mine will advise!
In the meantime, it is quite common for endocrinologists to cut levo too drastically to accommodate T3. This was my experience. Your numbers are slightly different to mine, so I am not sure what “too drastically” might be for you, but I would be inclined to say, given you have already had a 25 mcg drop, that maybe it is an idea to resist more than another 25 mcg, if that. I’m really trying to start the discussion on any potential drop in levo, as I am not sure as regards your numbers, but feel that there is a need to be wary. I spent six weeks feeling like I’d been hit by a bus and I’d like it if you didn’t have that experience!
In general, though, T3 has been a good thing for me. Less depression, less joint and muscle pain.. but that sharp drop in levo made me very tired! I hope they prescribe it for you.
I’ve just edited to say that trouble swallowing tablets is a thing for me sometimes! And I can see that your drop
Thanks for your reply. I’ve read about the balancing act between the two and I don’t fully understand it. In my simple mind if I want them both upper end of the range I don’t want to drop the T4, I’d just want T3 added? But I’m guessing it’s more complicated than that.
Great question and one for the endo! They just seem to have a habit of cutting levo massively to incorporate T3, so I’m just wanting to prepare you for that so that you can resist!
Very true and I think the board is correct, but this was not my experience of the NHS endo who cut levo from 100 mcg to 50 mcg whilst introducing 2 x 5 mcg T3.
Still, the issue is to get the prescription and then how you move dosages is up to you
Re the balancing act, I should have said that it is probably different for all of us. My ft3 has gone from 11% to 41% and for me, I suspect that, if I can get fT4 higher, that will be enough. But I think it would be insufficient for others.
I think so. Your numbers suggest to me that you’re a great candidate for a T3 trial, so I am crossing my fingers for you. I hope that others will chime in with their thoughts too - if they haven’t already - as I’m not at all expert and I think the more the advice, the more varied and therefore the better!
In my simple mind if I want them both upper end of the range I don’t want to drop the T4, I’d just want T3 added?
Both need to be upper end of the range when taking T4 only. When taking T4+T3, the protocol is to reduce levo by 25 mcg and add in 5 mcg T3 - although, quite frankly, a lot of the time there's no need to reduce the levo because the FT4 isn't that high. But, endos are not very good at subtlety! Nor are they very good at reading blood test results (one wonders what they are good at, actually...) and just blindly follow what they were taught in med school.
So, once you've added in the T3, it's best to concentrate on that for a while, and titrate it up to a decent level. From then on, it's a matter of personal taste where you want your FT4. Some people like it high in range. Others are happy with it low in range. And some are happiest with not T4 at all. We're all different. But, you'll only find you where you like yours to be by trial and error - assuming, that is, your endo gives you the freedom to experiment!
Thank you that’s helpful to know. I feel like I’ve already had my 25mcg reduction haha. But we shall see what is proposed. If they add in 5 to start are you best to split the dose because of the half life or is it okay to keep as is and take once a day?
5 mcg is such a small dose, I don't think it's worth splitting. But, in any case, you don't split because of the 'half-life'. That's got nothing to do with it. People split their dose because they find it more gentle on the body, without the highs and the the lows that you can get taking it all at once. And, some people always need to take their T3 all in one go to flood the receptors and get more into the cells. We're all different.
The half-life of T3 is about 23 hours, which means that if you took 5 mcg in the morning, there would be 2.5 left in the blood the next morning give or take an mcg or two. It doesn't mean that the T3 is 'all gone' in a couple of hours, as some people think. But, that's just in the blood. And T3 doesn't do anything in the blood. It has to get into the cells to actually do anything. And, the T3 that gets into the cells stays there for about three days.
Ah okay thank you for explaining that. Something else to figure out, I’m glad I asked though as I’d definitely misunderstood that point reading other posts.
I read recently that the t4 is expected to drop when you reduce Levo to add in T3 but eventually that higher T3 brings the t4 up again. But I've never seen that happen so am now resisting the Levo drop business! 100 Levo = 14.8 t4 for me no matter what my T3 is doing. 125 is top of range 22+.
Yes to difficulty swallowing when under medicated!
Thanks for your reply. Oh really because it happened all of a sudden. Previously no problem when taking my large magnesium tablets and all of a sudden, find myself choking on them on a regular basis ha! I have to cut them up now and space them out.
I shall keep an eye on it for sure. I really wouldn’t feel happy to go any lower than I am now - I felt better on a slightly higher dose but tbf on the 150mcg I was getting slight chest tightness / anxiety type feeling. And either way it wasn’t doing loads for my t3 anyway.
For years I couldn't take any pills - had to coax them down my throat with food as water didn't get them down. Now I take those monstrous magnesium ones with no probs swiftly followed by Lots of other vits. Ever since I was a little girl my family laughed at my inability to swallow pills and now in my 50s and finally on thyroid meds, I'm just fine.
When I was put on a 3 month trial of T3 my Levothyroxine wasn’t reduced. The last blood test for my T4 prior to starting T3 medication was one point below the highest number in the reference range. However, I was only converting 8% to T3. My T3 results were just about in the NHS range. The T3 medication addition has been a huge success for me. All my terrible symptoms disappeared almost over night and in a year I lost 4st in weight that I piled on when woefully under medicated. I’d go for adding T3 medication now. I take mine throughout the day. 5mcg twice a day 8hrs apart. I take it throughout the day as I’m a poor converter of T4 to T3. I take a third dose if I’m exercising on a regular basis for a long period. T3 is all about energy. It has made virtually everything in my body work better. I feel 10 years younger. I hope you get your trial and its a great success for you.
Have you done the DIO2 gene test to check if you have this faulty gene. I did this snd mine came back positive. This proved that I’m a poor converter. Suddenly a load of light bulbs switched on looking back on my life. Now I know what was wrong and why. I need to understand and reason.
Thanks for your reply. I’ll look the DIO2 gene test up. I haven’t been tested for it no but just assumed my t3 is low (and it’s not low like yours is) is because I don’t have a thyroid gland at all so I’m just missing the production of t3 that would happen there.
I have gone private so hopefully will get T3 although my gp said she would refer nhs too but it was just a longer wait time. I was wondering if I get prescribed it privately could an nhs Endo consultant validate it?
I don’t quite understand what you mean about an NHS Endo validating a private prescription? I get my private prescription then just send it to the pharmacy. I was getting it from Germany but now due to Brexit that source is now closed. EU will only accept an EU Drs prescription.
Nhs but only if an nhs endo authorises a T4/t3 3 month trial. So I wondered if my private endo prescribed could I then get nhs endo to ratify so I could get it via nhs? Just a thought I had
That’s what happened with me. I was put on a 3 month trial by a private only Endocrinologist. As the results were remarkable and also intervention by the private only Endocrinologist my NHS Endo reluctantly prescribed T3 on the NHS. It was all down to my private only Endocrinologist.
I'm glad o read your endocrinologist is talking about trialling you with some T3 :
Having Graves Disease, and had RAI thyroid ablation you have lost your own T3 production.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin, plus a measure of T3 with a guess estimate of around 10 mcg plus a measure of T4 with a guess estimate of around 100 mcg :
T3 is the active hormone that the body runs on and is said to be about 4 times more powerful than T4 with the average person utilising about 50 mcg T3 daily, just to function.
Your conversion of T4 into T3 can be compromised by several factors, and the usual suspects of ferritin, folate, B12 and vitamin D - I found I needed my ferritin up at around 100 for optimal T4 conversion.
I can't see your numbers but if, like me, you are still down in the 20's, chicken livers alone, will take you forever, and suggest prescription iron tablets in the first instance to get you started and it does take time to build up to at least 70 :
The conversion ratio when on T4 only is 1 / 3.50 - 4.50 T3 /T4 with most people preferring to come in at 4 or under : so if you divide your T3 into your T4 result you get 3.20 - so currently good :
Your T4 is coming in at around 74% ( if I see this correctly ) and a dose increase back up to your previous dose is an option as a higher T3 should occur - however looking back at the previous results the increase in T3 was minimal :
Ultimately which ever way round this goes you need to be dosed by your T3 and T4 blood test results and most people feel at their best when both T3 and T4 are in the upper quadrant of the ranges and at a high enough level to restore patient health and well being.
I seemed to " fall apart " around 8 years post RAI thyroid ablation when in primary care and only ever monitored on a TSH blood test and given anti depressants as a sort of consolation prize, and I have learnt of my situation back to front.
I failed in my NHS requests via my doctor to be treated with NDT and the hospital denied me a trial of T3 as my TSH was suppressed at 0.01 : and I have gone on to self medicate:
Both these other treatment options worked well for me and it was as though a light bulb was turned on from the very beginning of both trials and as though my pilot light had been restored, repaired and turned on.
Graves is an auto immune disease as as such it is for life.
Graves waxes and wanes :
RAI treatment simply destroys the thyroid gland so you are not seen as with a life threatening illness but now with a possibly life limiting illness - the severity of which is very dependant on your level of care and treatment going forward.
Thanks pennyannie that was a super helpful explanation. Your explanation there aligns with what I suspected in that I’m just going to always be simply missing some t3 production.
I agree on the iron front. I shall continue to self supplement. Would you have any idea on quantity. I moved onto iron bisglycinate tablets which are 25mg -and thinking to take 4 tablets a day. Will see how I go with that. But I did wonder if it was too little as did see Max daily dose is much higher at 400mg per person and for my weight.
I feel like this past 12 months I got to the same place you mention of “falling apart” it took 6 years post RAI. Previously was only on 50mcg of levo. But getting terrible anxiety and depression for a couple of years and now other symptoms including pain. Determined to feel better and with all the support from the lovely people on here it’s definitely feeling more possible.
Well I was prescribed Ferrous Fumarate 3 x 322 mg daily when my ferritin was at 22 :
I couldn't tolerate these and strangely enough they ran right through me although years earlier they would have constipated me :
I asked for an alternative but nothing was forthcoming so I purchased Solgar Gentle iron and these were ok, but the strength was much less, so I also took Spatone and ate liver weekly and it took a good 3 months to double my score ;
It was a slow build but now I stay topped up at around 100 with those chicken livers !!
I take adrenal glandular and Natural Desiccated Thyroid plus the vitamins and minerals as detailed to maintain optimal conversion.
Can I ask how you determined that you needed adrenal support? I don’t think I do.
Yes I thought spatone was also quite a low dose iron. My GP prescribed Ferrograd and until they ran out I took one of those a day and 2 iron bisglycinate, and the chicken liver. Got a test Monday so I’ll see how that was going and then go from there. I shall aim for 100 too.
Am aiming to get my D to 120 and do you know anything about B12, I read a few things on here that actually a level of 1,000 might help but the NHS range only goes up to 900 on my test. So I wasn’t sure if to mediate my current B vitamins.
I think my functional med wants me to take B6 complex but I’ve read a few things on here regarding B6 toxicity so that put me off, unless she’s thinking as a one off.
Well I read ferritin has to be over 70 for good thyroid hormone conversion - but we are all different and it becomes personal but I seem to be ok these last couple of years cruising along with a ferritin of around 100, folate at around 20 and active B12 at 70 + ( serum B12 at 500 + ) and vitamin D at around 100 :
I was living with a very achey achey lower back and nothing eased this :
I started reading up and learnt how the adrenals compensate when the thyroid is failing :
Elaine Moore details how RAI is also picked up, to a lesser extent, by other glands and organs in the body, including the adrenals.
I read Dr P 's book - which I think you have and thought I'd give this glandular a go :
My back started to ease and so I kept reading and following a few people who I thought relevant to my situation.
Yes I must finish Dr P’s book. Did you change your toothpaste after reading it btw? I picked up Elaine Moore’s which is why I haven’t finished Dr Ps. It’s super complicated though but still the bits I do understand are interesting.
Hey there didn't see this until I read back on our conversations myself :
No, I think I thought I had bigger problems to solve first :
Yes, Elaine's books are written from a medical, technical perspective s, let's face it, that was her profession, and think the first book, at least, aimed more at the medical professionals than us " mere ' mortals.
I think the website more manageable and in smaller, less daunting chunks to chew over !!!
Haha yes but it was really just because my dose was being increased. I was only on 50mcg until mid 2020. And my GP was supportive of getting my TSH lower than 2 or 3 but only part supportive of my fT3 being higher in range. But she was happy enough to refer onwards. I have been very lucky in that regard!
Yeah to be honest they were all 6-8 weeks apart. The only one that wasn’t was this last one which was only 4 weeks on instruction of the endo. But it looks 8 weeks because it took a while to sort the appt out.
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Help with blood test results please😳
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