After 8 years of struggling, 6 months fighting the NHS endo system and a gene test confirming I have a homozygous mutant DIO2 gene I finally have been given a trial of T3.
I've never seen the same endo twice, but the last endo who finally issued the prescription suggested I drop my levo to 50mg and add 10 T3. I usually take 100mg Levo everyday. The pharmacist at my GP surgery said dropping to 50mg T4 sounds extreme (and i agree) so she is going to continue to over prescribe me tablets so I can have a play around with my dose and gradually decrease.
How have people started on T3?
I am getting a full panel of blood tests privately for thyroid + vitamins etc.. so I can make sure these are all optimal.
Written by
Hrc1
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It depends on where your Ft4 is within the range as to how much levothyroxine needs reducing. Frequently endocrinologist will reduce dose too much
So first step is to get full thyroid and vitamin results
Always test thyroid levels early morning, just before 9 and last dose levothyroxine 24 hours before test
Ideally…..All four vitamins need to be optimal too BEFORE starting T3
Come back with new post once you get results
Members can then advise on how much levothyroxine you might want to reduce by …..if for example….reducing by 25mcg …..reduce for 3-4 days before adding T3
Generally starting T3 SLOWLY. ….with just 5mcg in morning initially
Assuming that’s ok….after week or so add second 5mcg mid to late afternoon
Retest thyroid levels 6-8 weeks after starting 2nd dose
Avoid getting prescribed 10mcg T3 capsules as these can’t be split
I asked to be prescribed the 5mcg capsules so I can play around with my dose abit. I've started just taking 5mg in the morning with my T4. I am feeling very tired and have been struggling with headaches behind my eyes initially (not sure if this is connected or I have a bug)
I am based in the York area - my prescription was given to me by an endo @ Harrogate NHS.
Yes, the test was done before 9am and last dose 24 hours before.I have been gluten free since Jan this year
I always have the same brand of levo almus/accord after having bad side effects with Teva.
I was taking vit D and B12 though not so much recently as have been having frequent blood tests for the hospital I didn't want to influence the results -I need to get back on these!
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
Hrc1, Yes dropping by 50mcg is too much. I did that and then spent a long time working back up to the 100mcg from the 50mcg I had dropped to.
If your ft4 result is near the top of its range say 80% to 100% or over range then drop levo by 25mcg. If your ft4 is around the 60% mark I wouldn't alter levo. (my ft4 was 60% through range and I shouldn't have dropped my levo starting T3)
Week 1 Decrease levo if doing so and give it 7 days from decrease to lower levels
Week 2 Add 5mcg of T3. Take along with levo - same food and drink regs apply.
Wait 1 or 2 weeks to see how you feel.
If ok add in second dose of 5 mcg T3. This could be 8 hours after first dose or at bedtime. some folks find it beneficial taking it at night.
Wait 8 weeks and do blood tests which must include ft3 as you are dosing with t3.
Be patient. I was on 100mcg levo. Endo told me to change to 50mcg levo and 20mcg T3. I did this gradually as described. The doses weren't right for me. I spent the next 2 years trial and error altering either levo or T3 (never two changes at once) then waiting 8 weeks then blood tests until I arrived at doses, dosing times and levels that made me feel on the mend. I am now on 50mcg levo plus 5mcg T3 morning and 50mcg levo and 2.5mcg T3 at bedtime. It takes time to find what suits and for your body to adapt.
I asked to be prescribed the 5mcg capsules so I can play around with my dose abit. I've started just taking 5mg in the morning with my T4. I am feeling very tired and have been struggling with headaches behind my eyes initially (not sure if this is connected or I have a bug)
Hrc My ft4 and ft3 were very similar to yours when I started liothyronine. I was told to drop levo by 50mcg. After 4 months on the lower ft4 my ft4 had dropped from 60% through range to 0%. It did not agree with me and I slowly worked my way back up to my previous dose. Taking T3 liothyronine makes ft4 drop slightly anyway. Apart from having to do what the endo says, there was no need to reduce your levo when you started t3.
It is important to have good vitamin levels to process the levo and t3 efficiently. A rule of thumb for the level to aim for is either double the number given if there is no range or at least halfway through the given range and ideally into the top third. So if you are not already it would be advisable to improve folate, ferritin and vit D levels.
It took me a couple of days to get over the initial feeling of yuk when I added T3 and things were very up and down for 2 years until I worked out the dosing. It is very much trial and error, taking it slowly and methodically.
I've carried on with my 100 Levo and have just started adding 5mcg T3 in the morning since Thursday. I am just feeling very all over the place and not well with headaches and fatigue.
You just need to ride it out until time for bloods. It is hard but the body needs time to adjust; the alternative would be to stop and get your vitamin levels better and try again but by that time you will likely have missed your trial period.
Good that you now have T3.....only ever tell a GP/ endo that it helps...any wobble may see it withdrawn!
To begin with it might be best to stay with 100mcg T4 but add 5mcg T3 for the first 6 weeks then see how you feel.
I would be inclined to test again at this point.....you may not need 10mcg
Your FT3 level will guide further increases
Don't be persuaded to dose by TSH research proves this is inaccurate.
TSH is a pituitary not a thyroid hormone and only reflects the overall hormone level ( high or low) ....not the level of FT4 and FT3 which are the important labs
When T3 is added T4 level drops anyway, that's just how the body works!
We are therefore advised to maintain T4 dose when first adding T3
This allows the body to adapt more easily to dose change.
We need to remain on a steady dose for 6/8 weeks before testing
It's not a case of "playing around" with dose changes that can lead to upsetting the system . You need to work methodically and slowly as we are advised, above....it takes patience and time.
There is no quick fix and rushing changes is counterproductive ....been there!
I need high dose T3-only to function so have experienced the challenges.
Sorry can’t help to answer your q, but I saw you said you’ve never seen the same endo twice- how many did it take to get to this point? I’m on my 3rd with little help and was curious to know just how many people with complex issues have had to see
I saw 2 different endos but this is because its the NHS and never see the same person twice! I pushed for a referral to see an endo with the help of a letter from a chronic fatigue clinic. I was referred to this first and the lady there after listening to me said ' I am happy to give you the label of M.E. but its clear you have some ongoing hormonal issues and I will suggest you investigate this first'. I had read about T3 medication and its something I wanted to push to try. I paid for a private gene test- which said I had a mutant DIO2 and I took this information to the NHS endo. The barriers have come mainly from not seeing the same person and my GP surgery moaning about cost of tablets- so I have had to push for a trial. My advice would be to do as much research as you can and take this knowledge with you. Also don't accept No for an answer.
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