I feel so much better: joint aches reduced by half, brain fog lifting, energy some days incredible, some not so and must learn to pace myself, digestion much improved, sleep is slightly worse in that I wake around 5.30 most days but I just take my tablet and go back to sleep for a couple of hours.
I’ve increased from 50 - 75 in the last week (test was before increase) as I felt myself slipping back. I’ll test again in 6 weeks.
Any feedback on how these results look and should I continue with the increase and/or any other feedback appreciated.
Thank you.
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Jamima
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Thank you SlowDragon - I’m using euthyrox. I’ve just split the tablet. I feel like the increase has affected my cortisol, I remember the old heavy head and internal thrumming which had gone on initial dose and has now returned. I’m self medicating as my last endo told me my thyroid was healthy and that I had CFS and needed to return to HRT.
I haven’t had many replies to this and I was hoping that someone might give me guidance on whether my results are good/bad and the best way to move forward as I’m self medicating. Many thanks.
Hi Jamima, I’m sorry I can’t really be helpful as I am recently diagnosed and still learning. I’m sure you will get helpful replies though - this is a great community.I hope you don’t mind me asking, but your March results all look to be in range? But you were prescribed Levothyroxine? I may be reading it wrong. I’m interested because I was sub-clinical for many years - TSH fluctuating between 4.7 and 5.6 in the six years before I was prescribed Levo. It was only prescribed when My TSH reached 10. Most importantly- I am so glad you are feeling better! I’m sure some lovely people on here can be more helpful than me x
Thank you Buntikins. Yes, my results were technically in range but I was told on here that my TSH did not correlate with my low FT3/4 and further research suggested it might be central hypo and my tsh would probably never rise and nor would the frees. I'm self medicating because I just couldn't continue the way I was feeling with those results. I feel better with the levo and will continue to test and check levels are ok. Thanks for your input.
Your results for FT4 and FT3 are still well within range, so it looks as though you are doing OK. Your FT3 is 51% through the range and your FT4 is 43% through the range (Thanks helvella for your spreadsheet!). So it looks as though you had room for the small increase you have made to your dose. A doctor who was focussed on your TSH result wouldn't see it that way, but since you are self medicating that isn't an issue. Your FT4 to FT3 conversion is obviously working really well, which probably means your vitamin levels are healthy. I'm glad to hear you are feeling better, long may it last.
Thank you eeng. I'm still a little nervous about self medicating but I couldn't go on the way I was before levo. Still amazed that 2 endos were adamant that my levels were healthy despite being symptomatic and both encouraging a return to high dose HRT, despite me telling them it makes me feel worse even in tiny doses!
You results are looking much improved and glad to read you sense symptoms being relieved.
The accepted conversion ratio when on T4 monotherapy is said to be 1 / 3.50 - 4.50 T3/T4 - and to find how well you are converting you simply divide your T3 into your T4 :
So, your first set of results show a conversion of around 3,23 which has remained constant at the second test at around 3,27 and this is a very good conversion, maybe a little too fast, but think it may swing out a little when you reach optimal levels of T4.
Your T4 is now coming in at just around 40% through the range and we generally feel at our best when our T4 is up in, or towards the top quadrant of it's range as this should, in theory convert to a good level of T3 and alleviate symptoms of hypothyroidism, which are caused by too low a level of T3 for the patient.
So there is plenty of room for a further increase in T4 and your T3 now coming in at around 51% through the range - and again, I think this will even itself out as you slowly build up the T4 thyroid hormone replacement.
Thank you pennyannie, I don't know any of those calculations so I appreciate that. What should I be aiming for in terms of T3 levels? When will I know to stop increasing? I had a bad day yesterday which was day 3 of the increase so I've decided to go more slowly and only increase by 12.5.
I think the longer you have been hypothyroid the more slowly you will need to go when reaching optimal.
Your body needs time to adjust and rebalance itself :
What symptoms did you have for you say you had a ' bad day ' ?
I don't think there are any special numbers to score, as it's more about what dose suits you best :
If you look at the ranges they offer you a rough sliding scale of T3/ T4 ratios - but where you will feel your best is unique to you.
I'd suggest at least 50% over on the T4 and then go slowly - you are converting well to T3 and another blood test in around 8 weeks time on just the 12,50 increment in T4 might just show these two vital thyroid hormones in a balanced ratio that suits you.
My worst symptoms were reduced cognitive function and I thought I was dealing with dementia - when I increased my T4 my brain literally switched itself back on again.
My T3 rose from 4 to 5.50 and this was achieved in just one 25mcg dose increase in T4 - Levothyroxine.
However, I wasn't allowed to stay there as my TSH was then 0.01 - and told I was over medicated by doctor and hospital endocrinologist and this was when I started self medicating some 4 years ago.
I did end up taking too much T4 and experienced an awful headache for a couple of weeks and I found my T3 had dropped away again.
It's a fine balance and it's difficult but all you can do is try, and adjust slowly as T4 builds up in the body, though I noticed within a week of increasing my dose whether I'd made the right decision or not.
I'm with Graves post RAI thyroid ablation, and thanks to the support I found on this forum, I now try and give back here appropriate, and think we all need to look to a better understanding of ourselves and just try and see what is best for each one of us.
Thank you Pennyannie. The symptoms were as you desribe - cognitive. Would my levels increase if I stay on 50, or will I need to increase to move the levels a little?
I'd be inclined to stay there a little longer if not feeling too good, giving your body time to ' catch up ' and then maybe add in another 12.50 and see how that goes :
I found I responded quickly to a dose increase - probably because I badly needed it :
It's a bit like a person dying from lack of water - give them a litre of water and it won't do them any favours - as little and often is the better solution.
Today is better, although I still feel tearful. I had water retention yesterday too and a feeling of being 'swollen'. I'm splitting my dose today and will stick with 62.5 for a few weeks and see how I feel.
Hello Pennyannie - I've been trawling through my old post trying to pull together a bio and I came across this post from you. Something jumped out at me "I did end up taking too much T4 and experienced an awful headache for a couple of weeks and I found my T3 had dropped away again" - I've recently been dosing 75 Levo and my latest test results show a T3 which hasn't budged. I find this strange as I previously always converted well, but I'm also feeling absolutely rubbish on 75 levo and wondered if I've possibly gone too far? Is it possible for too much (for the individual) levo can reduce or block T3 from increasing?
I can't say for sure - as its something unique for each of us to find for ourselves :
I was reading Ray Peat recently - and he suggests a dose of synthetic 40 mcg T4 daily and then it's a slow build with synthetic T3 to find a ratio that suits you and your body.
Prior to NDT - I did try a synthetic T3/T4 combo and was hanging on to the fact that on average the thyroid produced around 100 mcg T4 + around 10 mcg T3 daily -
so I never thought to drop my T4 below 100 mcg and could only cope with 6.25 mcg T3 - I felt ok but thought I should be nearer 10 mcg than 6,25mcg - and ended up making myself very unwell for a couple of weeks - and couldn't go out, let alone drive my little car.
So I over medicated myself on synthetics - trying to replicate 100 mcg + 10 mcg T3 -
I frightened myself and went back on T4 for a month - and then tried NDT - which was a bit like putting slippers on - rather than walking in stiletto heels 2 sizes too small - as it was the pressure within my head that was absolutely unbearable.
So if I take too much NDT - I get a very mild symptom of this awful tightness in my head.
Does that even make any sense ?
So anyway - NDT gave me back my cognitive function - I'm not aware it's improved my physical stamina at all - but then I'm post RAI thyroid ablation and probably now at 77 more accepting of things - though I'm much improved than where the NHS left me.
I only seem to need 1 + 1/2 grains - so 57mcg T4 + 13.50 mcg T3 -
and doubt I'd have trusted myself. long enough, to find this sort of a dose with synthetics though I also think the working and dose of NDT does not correlate easily with synthetic treatment options anyway.
Do my ramblings help at all - I hope so - and sorry if I've confused you further :
Thank you pennyannie - yes, your rambling help tremendously and make absolute sense to me. Interestingly, this trawling through old posts/tests has revealed that I seem to feel best on 50 levo and 1 met I, presumably I could try 3 Lio but there's something about the met that seems to work. I've stopped my 75 levo for a few days and as usual feel great. I'll restart on maybe 40 if I can cut pieces up to that and add met as appropriate. Thanks so much x
I always get bad days around 3 days into any dose change and that last for around 10 days and then even out. I'd stick with your 75mcg if I were you. You are nowhere near over-doing it. Just accept that your body has to sort itself out with a new dose and that it is what it is.
Thank you FancyPants that's really helpful to know. It's a little scary when you're self medicating and feel good, then feel bad. I appreciate your input.
Oh I know all about that! I self medicate with mostly T3 now and am still struggling to get dose and timing right. But I have always hit a bit of a wall with any dose change, Levo or T3, up or down. And that wall always comes out to meet me on day 3 or 4 and is unpleasant for a week and then less of an issue for the second week and then I've forgotten it. So many things have to adjust when we take thyroid hormones and increase or decrease them.
I'm working with Paul Robinson (author of several thyroid books for T3) at the moment to try to get my doses right and he recently gave me this advice. If I change something and I have a reaction to it, don't instantly change again (which was what I used to do out of fear). Hold it for a week or 2 and see what happens. Red flags are noticeable higher HR that doesn't calm down and temperature over 37. But anxiety, feeling jumpy, tearful, out of sorts and unable to concentrate? Be kind to yourself and carry on. It will fade, and only after a few weeks of it not fading, try a further change.
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