Anyone else on T4/T3 combo

[FattyMa]

Moved to this section as no replies in chat.

I have Hashimoto's and not doing so well on Thyroxine after 2 years diagnosed. Decided to try adding a little T3 as advised by private endo. Wondering if any others have tried it and if it has made a difference?

Sorry you've had no replies here either.

I've not tried it myself, but I know from the ThyroidUK forum that the addition of T3 can make an awful lot of difference to someone who is slow to convert T4 to T3.

However, as with all things thyroid, it's not a given, so you would have to give it a try and rule it in or rule it out.

Yes, I take both. T3 has changed my life. How much are you taking?

I no longer have symptoms like swelling/fluid retention, constipation, constant fatigue and thinning hair that I had even when well-medicated on levo alone (all test results ideal). No idea why it works as I didn't show any signs of a conversion problem and my t3 levels were great on levo alone.

I also had more or less a lifetime battle with depression, and I no longer struggle with it. Whether or not that's down to taking t3 I couldn't say, but I'm a happier and more stable person, I don't want to sleep all day, I like being productive etc. I would attribute some of this recovery to t3.

My mum also takes it and feels better for it (she also has Hashi's), so I do wonder if there is some genetic need for it.

Not saying it is a fix for everything, just that it has helped me feel well. I hope it helps you too.

Thanks for the replies much appreciated. I will start on Monday 5mcg twice a day alongside reduced Levo 75mcg per day. Really hoping it makes a difference 🤞

I'm not a health professional but just wanted to suggest if you get no joy on 5 x 2, 10 x 1 might suit if there's no reason why you can't. I find if I do a split dose it doesn't work as well for me but horses for courses, others find it better. In any case it's a good place to start.

May I ask how much your levo was reduced? Just being nosy really. Sometimes they reduce it more than can be made up with t3 (others fail to reduce it at all which can also be a problem as you can imagine).

Do you like your endo? I worry my gp will discontinue my t3 and am always on the lookout for doctors who aren't afraid of it.

I'm on t4 and t3. I still had exhaution on t4 only. It's made me feel normal again! I did have a problem waking every night but ive resolved that now by splitting my t3 and taking 10mcg at night. I take 10mcg in the morning too with 50mcg t4. I need my TSH to be suppressed to be well and, without taking t3, my ft3 was right at the bottom of range and i couldn't function!

I sir have any advice, sorry, but just wanted to ask if the T3 has to be prescribed? I suspect it does but just wanted to check!

Mine is prescribed. I know some people get it from other counties, where it's cheaper, if they can't get it through their GP or endo.

thefirstmrsdewinter thanks for the tip I have read others who take full dose at once, will see how I get on. I am on 100/125mcg alternate days do you think going down to 75mcg is too much of a reduction? Wasn't sure about endo to start with but he has been really helpful in the follow up.

Idreamedadreamonce good to hear you are feeling better now that gives me some hope Yes looks like I will have to try and source via the internet as had to pay for private prescription for my trial. Seems to be a controversial issue.

daisychainer I tried to get it via NHS as suggested by my endo who wrote to my doctor who was willing to give me a trial but when I went to the chemist they couldn't get permission from the health board, so I have had to buy it privately. Seems the NHS have withdrawn T3 due to the costs but people are campaigning about this so hopefully things will change. Meantime will have to self-fund which sucks when you've paid taxes all your life.

I've read that 10mcg t3 is the equivalent of 30 to 50mcg levo, so that sounds about right.

Sorry you've had such a struggle getting your hands on it. I have bought mine online in the past when I felt messed about by my gp and I didn't want the threat of having it withdrawn held over my head. You can also get it in France, Greece and Turkey for very little money apparently.

From what I've read it seems like the nhs has negotiated a very poor deal and we're being penalised for it. The less it is prescribed the less comfortable doctors feel prescribing it.

I feel like it has given me my life back, in some obvious ways and in some more subtle ways that have come out over time. I hope it helps op.

Thanks for the lovely reply arousingcheer so reassuring to hear yourself and others have had a positive experience with it

Same same same!
Where can I buy T3?

The folks on the heathunlocked/thyroiduk forum often buy from other countries. They can help find a reputable supplier but you need to only take what your body needs. An endo can help assess what you need.

Yy, I should qualify what I've said here in case it sounds like I'm advocating for everyone to use it. T3 can cause heart and bone damage.

If levo isn't relieving symptoms there can be a number of reasons for that. Often vitamin/mineral deficiencies or insufficient treatment can make you feel unwell. There is a process which starts with extensive blood testing and, if necessary, supplementing and then retesting. You need to keep records of tft results and should be allowed to get your tsh, t3 and t4 not just within range but in the part of the range which relieves your symptoms, which for some means a low tsh.

Anecdotally it looks like most people who feel unwell on levo are taking an insufficient dose. My endo said you need to be taking enough levo for long enough to see if it will help you feel better.

I take zinc, vit b-12, vit D and selenium already. I was started off on 25mcg of Levo last June, increasing every 6 weeks. I’ve been on 100mcg since Jan, with an added 25mcg every other day. I’ll Know more when my blood test comes in but just getting fed up of the weight gain. I was really frustrated with the low dose increases but my doctor assured me that was the right way. I’m trying to learn more about the condition but my brain just boggles sometimes. I’m especially upset about the weight gain now as I’ve been feeling a lot better since March. I guess I’m impatient too

It's always worth maximising t4 so tsh is really low, some even need below the lowest range (nhs endo said this) and keeping it like that for a good 6 mo. Also for ferritin vit d and b12. Gentle exercise building up to better levels. Then reviewing symptoms before exploring t3. Many other deficiencies can cause similar symptoms.

Also, always get tests in the morning- consistently is the key though - as tsh is a little higher then. Take thyroxine after the test.

However be aware you're doing this - following all this I find on t4 I need to be about 0.8- 1 tsh; any lower and I tip slightly into hyper symptoms.

With thyroid meds it's always about consistency. I fail to separate it from breakfast these days with small people but I have found a level of t4 that works if I don't. I have the same breakfast too.

V good that gp has added a tiny tweak of couple of extra 25s too.