t3 only or combination t3/t4

[Mag999]

I’ve been working with a private gp to see if t3/t4 will work better as I appear to be a poor converter

I have had some improvement in fatigue and mood symptoms but the severe muscle tension has come back,

The doctor is German and she says it is common to test rt3 and if it is high to consider t3 alone.

I realise this is a contraversial test and haven’t proceeded as I’ve now been referred to endocrinology and had a helpful discussion about t3 and they agreed I need it. I didn’t want to rock the boat by asking if I can try it alone

I did do a couple of days without levothyroxine and I seemed to have more energy and less muscle pain and tension.

Does anyone use t3 on its own and how did you come to that decision.

my t4 has dropped since using t3 and the doctor says not to worry about that, also tsh is really low so am concerned the nhs endo will have something to say about that

I am on 62.5 mcg t4 and 20 mcg t3, I have a goitre and several nodules up to 1.3 cm, having enlarged thyroid means it is autoimmune? My antibodies have always been low and I assumed I wasn’t Hashimoto but recently read goitres indicate it.

thanks again to all who reply!

[greygoose]

I'm on T3 only, and I explain exactly how it happened on my profile.

[Mag999 in reply to greygoose]

O my god! That’s a truly horrific tale, I’m glad you are in a stable place now.

[AKatieD]

On T3 only after starting on T4 and not doing too well on it. Then moved to NDT but found some of the brands had quality issues so went to T3 only for a consistent product.

[TiggerMe]

Looking back at this post... healthunlocked.com/thyroidu...

I'd be surprised if 12.5mcg T4 is a big enough increase to get your fT4 to a decent level (+50%) most of us feel better for a week or two when stopping T4 but then it all goes horribly wrong 😕 I'd suggest after testing your levels you'll need to go to 75mcg T4 before thinking about going T3 only, as adding T3 lowers fT4 levels and some of us actually need a small increase rather than a decrease that the Endo's are son keen to force upon us.... don't underestimate how awful effect of low fT4 even when taking T3

Have you added magnesium to your supplements? If low it could be the issue with tight muscles

[Mag999 in reply to TiggerMe]

Yes I’ve just started magnesium again and I think I should have done that sooner. I have been on 100 and 75 mcg of levothyroxine, it started to raise t4 above range hence trying the in between dose but I take your point and will have a think. It’s been such a long haul and I tested all along but still can’t find consistent relief.

[ScriptMaz]

I’m on T3 only and feel so much better on it as opposed to levothyroxine. I had chronic joint pain on the levo and like you stopped taking it and felt better. I got referred to endocrinologist and asked if I could go on T3 only and she allowed it. Prepare for constant battles though as some of them really don’t want to keep you on it as it’s expensive. They also go on numbers rather than symptoms but keep fighting to be heard

[Mag999 in reply to ScriptMaz]

Thanks, helpful to know as I’ll have to see endo shortly, she is going to prescribe t3 on nhs finally which will help and will ask about mono therapy trial

[ScriptMaz in reply to Mag999]

Good luck

[Bertwills]

I’m on 40mcg of T3 only & feel much better for it. I don’t convert T4 so it just built up into high levels of RT3. Felt awful for years until I joined this forum & learnt a great deal.

I have mine prescribed . You could try increasing your T3 & lowering your T4. I had a multi modular goitre which did disappear even though I was only taking T4 at the time so it will go eventually. I’ve never had any out of range antibodies tests so I’m not sure about goitres being auto immune.

My TSH has not always been suppressed whilst on T3. It’s often between 1 & 1.5 so it doesn’t always get surpressed. It doesn’t matter if it does. Sounds as if you have a very enlightened doctor. Lucky you.

[Mag999 in reply to Bertwills]

Did you test rt3? I’ve had a lot of negative responses about rt3 testing, but your experience does ring bells with me, I seem to get worse with higher levothyroxine

[Bertwills]

me too, I’ve tried many times to keep 50mcg T4 in my regime but then I let it go & I feel brighter & better. RT3 used to be in the standard Medichecks tests which is how I know I had high levels. It’s not included anymore so I can’t tell. But it’s irrelevant on T3 only. You could pay for a test if you’re curious, but apparently they’re expensive tests. Definitely there’s been a change of view on the forum as to their use. Lots of things raise rT3 levels, many unconnected to the thyroid so the tests have lost the attractiveness.

If your doctor would let you do T3 only I’d try it, you can always change back to combo treatment. You don’t need to discuss private treatments with NHS doctors. You can refuse blood tests & just tell them you’re being privately treated. You can ask your German doctor not to write to your GPs. I refuse to discuss it with my GP & he accepts it. He’s no longer responsible. You can write to your surgery & tell them you’ve moved to private thyroid treatment & don’t want or allow any NHS blood testing. If asked why say that it’s inadequate for your needs.

[Brightness14]

Paul Robinson has written several good books to read on the subject of T3. He was ill for years and is now on T3 only. Some people do well on it.

[lola1956]

I’m on T3 only I’m self medicating and have been for around 12 years or so , started off with my GP on levothyroxine but felt awful with headaches coldness inside insomnia , the worse was the joint pain! I never found an endocrinologist that would give me the full 75 mg Liothirine that I’ve been on for years , consequently I self medicate but it’s getting harder to source and I’m constantly in fear of not finding it

[Mag999 in reply to lola1956]

Wow, 75mcg seems very high? Do you do blood tests to check levels or do you go by symptoms? I thought you had to have a prescription from a doctor for t3, I think I’d be happy to do by myself as all the doctor I get it from does is ask for blood results and how I feel which I can do myself!

[lola1956 in reply to Mag999]

I have regular blood tests also I go by symptoms, I’ve been doing this around 12 years so obviously I started off very very slowly but have been at this dose for a few years !

My GP knows I do this and accepts it and has tried hard to find me an endocrinologist that will give me an nhs prescription,alas they only want me to take 100 mg levo and 10 mg t3 which I’m not prepared to do , I’m struggling this year because my Greek T3 is now impossible to find , so it’s all in gods hands now !

[Mag999 in reply to lola1956]

I read your history, have you been able to get back on your effective dose of t3? I hope you have, you’ve had such a struggle.

[lola1956 in reply to Mag999]

Thank you for your kind words, I have hashimotos too I wish you well

[sparkly]

I'm another on T3 only. Had issues with allergic reactions to all tablet forms of thyroxine, then after 8 months, I really wasn't well and felt I was taking poison. Liquid didn't cause the allergic reaction ( tongue swelling), but that too eventually was poison and felt horrendous.T3 was prescribed, but Mercury pharma didn't agree with me and eventually realised I couldn't take t3 when thyroxine was still in system.

Hubby sourced uni-pharma that was great. Eventually got fed up of scrabbling round Internet and having shelled out over 6k+. Finally, I asked Endo to prescribe and eventually settled on Morningside brand

[Mag999 in reply to sparkly]

Another long route ! Do you know why you reacted so badly to levothyroxine? Were any tests helpful in deciding t3 only was the best option?

[sparkly in reply to Mag999]

No, no tests but early on my endo said t3 was likely needed as I was a poor converter. I've been a complex case all along and still very symptomatic.