My recent appointment by phone with her lasted about 5 minutes. She told me to take 5mcg of lio twice a day and at the same time change my Levo dose to 50 mcgs .
I’m currently taking 87.5 mcgs of Levo (100 one day then 75 on alternate days).
I’m keen to start T3 but also want to prepare in best way.
Initially I would like to just take 1 x 5 dose of lio to see how that goes for me.
I’d really appreciate any guidance on how to reduce my Levo and start the T3. 🙏🏽
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Oakwood4321
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I'd drop the levo first, to the 50 mcg, and wait a week or two. Then add 1 x 5 mcg lio with your levo. Wait another week or two. Then add the second dose of 5 mcg lio, well spaced from the first. HOld for 6 - 8 weeks then re-test bloods.
It makes sense to drop the levo as you are currently over-range, but it may drop quite a bit - so I'd def take both doses of lio. See how you feel and what your blood show then. You may need to add back a bit of levo or have a bit more lio to feel tip-top - or this may be the "right" dose for you.
If you feel completely well just on 5 mcg of lio, or adding the second dose makes you feel jittery, then by all means stick to 5 mcg and re-test bloods after 6 - 8 week - but with a relatively large drop in levo I'd expect you to need both lio doses
For me, the more I go forward on this journey the more things make sense to me, but Ofcourse they may not feel right for you. One thing I now don’t understand is this notion to take different doses of Levo on alternate days. What makes sense to me, is to take the same amount of Levo on the same days, every week. Because alternate days means you can’t work out your total for the week, accurately. So to work out your weekly total, did you take 75mcg for 3 days or 4 days that week? What’s the start of your week? A Sunday or a Monday? Does that make sense or is it just my brain that’s wired differently?So for example for me, I consistently take 150mcgs Levo, Mon - Fri and then 100mcgs, Sat + Sun, that way I know absolutely, how much I take per week, 950 per week. That way, when I want make changes, or subtle changes, eg drop 50mcg per week, I know to just go to Mon - Thursday, 150mcg and Fri + Sat + Sun, 100mcg.
So for you I’m going to guess that you are on 100mcg x 4 + 75mcg x 3 = 625mcg per week. You could drop it by 100mcg per week = 525mcg. So really you could just take 100mcg tablet, Mon - Fri and a 25mcg tablet on Sat, nothing on Sunday. Or take 100mcg tablet Mon - Thursday and 125mcgs on Friday. Or 75 x 7 days per week. There are so many combination that are more consistent than alternate days.
I very much doubt you’d have to go lower than this when introducing T3, 5mcg only. Gauge your reaction to that introduction, and then add your other 5mcg. Test after 6wks of lowering your Levo and that combined with how you feel should help you see what you need to do going forward.
I do not believe that you have to lower your Levo first, or that it has to be lowered so dramatically. Obviously your FT4 is over range and that would be ok, if it were converting better (more optimally for you to feel better), so it’s just a waste of Levo and could actually contribute to lower conversion rates.
And I’m also not an advocate of so slow that you interfere with your own production of thyroxine or conversion but you don’t actually add enough in to make up for that.
Ok, so now that I’ve complicated that for everyone, I’ll ask, how on Earth did you get NHS T3? 😱 My T3 results were 0% through range, consistently, for years and no one cared! Gah! Lol
Anyway, good luck to you but don’t be set up for a fall with these NHS endos, dramatically reducing your Levo whilst prescribing low doses of T3, I hope this is not a ‘I told you T3 wasn’t the answer’ type endos.
Does that make sense or is it just my brain that’s wired differently?To work out 'alternate day' dosing , you have to do the sums for 14 days not 7 .. then it all makes sense.
if you see what i mean :
Week 1..................Week 2........Week 3
Mon 125...............100.............. cycle starts again, same as Week 1
Tue 100................125
Wed 125................100
Th 100................125
Fr 125.................100
Sat 100.................125
Sun 125................100
( 7 x 100mcg) + (7x 125mcg ) = 700 +875 =1575mcg divided by 14days =112.5mcg.
yes . i prefer to half a 25 tablet and do 112.5 each day , so i don't get in a muddle by forgetting what i did the day before , and because i'm still to vain to get a pill dispenser ...
Thanks NWA6 for working all of that out. I’ve read it and re read it fighting through the brain fog and realised I take a different amount on alternate weeks. I have a 7 day pill dispenser and if I start on Monday with 100 then I end of Sunday with 75. The next week I then I start on 75. One week it totals 600, the next week 625.
I hadn’t even thought about any of that.
I’ve been on that dose for about 6 years since a gp told me to take 90mcgs a day . She said take 100 then 75 on alternate days….I just did it. When I joined here I posted I took 90 a day 100 & 75) and SeasideSusie noticed it didn’t make 90 but 87.5.
I’m now going to take 75 a day each day and not go as low as 50 as Endo said without looking at any blood tests.
I’m really taking on board your last paragraph and will watch out for that!
Getting T3 on the nhs is thanks to tuk and this forum . I followed guidance, got private blood tests and feedback from here then rang my gp asking to see an Endo. She didn’t want to refer me but said she’d run things past one and see if they’d see me. I then got an appointment in June. where I was told I was very lucky as they are giving T3 trials in my area. I’ll have it for 3 to 6 months. I’m under Basingstoke and North Hampshire Hospital.
You are so welcome and I really do wish you well going forward. I cannot believe you’re at Basingstoke, I’m in Camberley, Frimley hospital Endo said she’d never perscribe T3, she said it was like steroids and dangerous long term effects. Luckily, I got a private Endo to prescribe, changed my life, now I’m going to self source, I never want to be beholden to a medical professional who knows less than me about thyriod (and what I know could fit in the palm of my hand 😂)
Thanks for sharing your hurdles and achievements NWA6. Nice to know we’re in same area , I was in camberley for years before here., my kids born in Frimley Park!
I was going to say too, don't drop the Levo too much because 10mcg T3 didn't touch the sides for me. Still take it slow, start with the 5mcg as you said you wanted too and hold for a couple of weeks while your body gets used to the idea, but then when you get to 10mcg and hold you don't want to be too low on the Levo.
Thanks FancyPants54. I’ll take the 75 mcg of Levo and monitor how I feel. I’ve got my first appointment with private Endo from on here booked in December, hopefully good time to check in with him. Grateful for yours and others feedback from my posts.
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