T3.... what to try next

[Murphysmum]

Ok so an update on where I am now having had my T3 script for around a month. (@slowdragon you will know this already 😉)

So after a bad start (very had headaches and a day of withdrawal symptoms) I gradually increased my T3 to 2x5mcg per day and 125mcg levo (reduced from 175mcg).

For a few days on the correct dose I felt better, my heavy legs disappeared - yay! However, that was short lived and now I’m feeling very under medicated again - shaky, headaches, feel like my legs will give way, stiff neck, etc, etc.

Slow dragon pointed out that maybe I needed higher T4 in addition to my T3 and I think she’s correct. I felt at my best once I was on 200mcg levo but after about 12 weeks this proved to be too much.

I have a blood kit ready to do on Monday morning and an appointment booked with Dr Adamson on the 15th but I wanted to know peoples thoughts on the movement I have with my meds. Ie, how much levo could I potentially take - if I felt well at somewhere between 175/200mcg but my T3 was still low on that, could I potentially just add some T3 to that dose? That would make it way too high would it not? But how to avoid symptoms on a lesser dose?

I expect to have to increase T3 but obviously can’t tell without bloods, I know that. So could I increase both?

I realise this is all about hypothetical without the bloods and I’m jumping the gun, but I just want to know what to do once my results arrive next week.

My gut feeling is that I’ve been losing T3 gradually for years and actually need quite a high dose of T4 to feel well but my muscles still cry out for more T3 and will do until stores are renewed. I don’t know if that stands up scientifically but it’s how I feel!

I just checked last years result of my Lyme test that I assumed was negative, and it was - phew. At least something else ruled out.

Any advice would be gratefully received as always 😊

[Hay2016]

It’s a balancing act isn’t it. I dropped 25mcg and added in 5 t3, this dropped my t4 and raised tsh. Added in 5 more t3, t4 still low and t3 a bit better. I then added alternate 25mcg t4 back in and my levels looked much better on testing. Still felt under so would have added another 5t3 but endo interfered. I’m now back on t4 only as hubby worried about me taking t3. See endo in a few weeks and will start the process again. Each change in meds’ was kept for 6 wks and tested before increasing.

I’d see what the levels are like on testing if you’ve kept same dose for 6 weeks. You can then tweak to the numbers, without the bloods we just guess what may be happening. I was quite surprised how much my t4 dropped. At last test I was t4 19 (22 top of range) and t3 5 (top of range 6.6). It’s a slow process as you know, how you feel plays a role too.

Good luck

T3 is self bought with private script much to endo horror

[Murphysmum in reply to Hay2016]

Aw man, is it a slow process! 😩

Finally feel like I might be getting somewhere though.

Thanks for your thoughts, that’s interesting about the T4. I feel quite unwell again after feeling mostly well but with heavy limbs and brain fog. Everything else had gone and energy levels were quite good. No muscle strength or stamina though.

Why did hubby worry about T3?

Roll on bloods next week!

[Judithdalston]

Unfortunately everyone is very different; I took advice from the forum when adding T3 and infact on first blood test found I must have reduced levo. too much as even the FT3 blood result had gone down on adding 25 mcg T3 and reducing levo. by 50 mcg . So then had to spend next 6 weeks putting levo.back up. Like you I could never get my FT3 to the halfway in range even tho got FT4 result above range; I think I needed proportionately much more T3 , and the usually quoted T4 is ‘equivalent’ to 3-4 times T3 was meaningless. When taking the combo I ended up on 50 mcg T3 with 100 mcg levo., so much more T3 than I could have imagined ( tho currently on T3 trial of 70 mcg T3 only). I can recommend getting your vits/ mins to optimal as a priority before you juggle with dosing. Remember that T3 and T4 have very different half lives, so infact for much of the month you had some of that 25 mcg of levo. in your system. Ie from when reduced your dose it was in your system( 12.5 mcg start week 2, 6.25 start week 3...); T3 can feel much more immediate tho takes days to get to/ leave cells. I presume you were a poor T4 to T3 converter, so I would increase T3, but your endo might not agree if he / she is concerned about very low TSH. Be prepared to be very very patient, and experiment...even timing during day/ night can make a difference.

[shaws]

I've read that research has found that when taking a combination of T4/T3 that a 3:1 or 4:1 combination has proven helpful.

[silverfox7]

When taking any form of T3 then we read the results differently so if you were correctly medicated then TSH should be suppressed, FT4 can fall but FT3 should be high in its range. So you are not as far out as you maybe thought.

Did you check whether you had a conversion problem before you added in T3? Results for that could be helpful.

[Murphysmum in reply to silverfox7]

Hi silverfox7 ,

Yes I had checked and although I wasn’t the worst converter in the world, it wasn’t great. Hence the T3 trial.

So, if what I’m feeling now is as a result of the new T3 not being adaequte yet, but also my T4 dropping a bit, do I have to increase my levo a bit in time too?

(Obviously until I get bloods next week this is all speculation, but I’m interested!)