Managing TSH with T3 only

[purplejuicy]

Hi, long time since I posted!

I have been taking 50mcg levothyroxine along with 37.5mcg of T3 (which my gp has never known about FYI) for about 1.5 years now. Feeling great, in fact tolerating exercise, losing weight, fitness up, bowels regular etc.

However my bloods have been off for a year and Dr's are freaking out about my tsh as its very surpressed and concerned I'm over medicated and at risk of osteoporosis. I've attached my recent bloods.

So for context, they asked me to stop T4 for 6 weeks to get a better better view on my natural production. But I did not stop the T3 during that period, only stopped it 24 hrs prior to my blood test.

They're still concerned so I'm going to have to bite the bullet and admit to taking T3 and explain my reasoning but my question for anyone who's experienced this.... What would be the best course of action?

Reduce T3 dose (I've already reduced to 31.25mcg) and add back in levothyroxine? Or stay with T3 on power dose?

I'm nervous reducing due to feeling so much better in myself but have obvious worries about the tsh being so surpressed. Plus T4 is almost non existent. Does that matter when on T3 alone? It's the active hormone so surely this is what counts as I can't seem to convert T4 to T3 naturally myself but Dr's only seem to care about T4 and tsh so it's rather confusing and exactly why I've kept this to myself for 8 years as I finally feel good and able!

Hoping someone can shed some light or their experiences at least. Thank you in advance

[greygoose]

If you feel well, don't change anything. Just tell them to B off! It's your body and your health and they don't have to live with the consequences of changing the dose. By all means tell them that you're taking T3 - it's not a crime - and explain that that is why your TSH is low and it doesn't matter one jot! It's low because you don't need it - and it's not that low, anyway, it's still readable. TSH has nothing to do with bones or hearts. Once your thyroid hormone levels are optiimal, its job is done. It doesn't do anything else. And it's not their job to dictate to you. They can advise you what they think you should do, but there's no law that says you have to do it.

Only an idiot could look at your results and think you were over-medicated. Your Frees - the most important numbers - are very low, and I would have thought you were under-medicated. Although whether or not you need your FT4 higher than that, only you can tell. It's a very personal thing. But your FT3 would be too low for most people.

Don't let them brow-beat or bully you. Stand your ground. You probably know a lot more about thyroid than they do! They are NOT the experts. The patient is the expert in his own body.

[DippyDame in reply to greygoose]

Hear hear!

[purplejuicy in reply to greygoose]

Thanks for your empowering reply! I absolutely intend on sticking to my guns and doing what makes me feel good...however the worry of osteoporosis is real and when googling TSH, it does come up with a whole stream of websites and studies relating it to heart/stroke/bone issues. Where did you source your info on that not being the case out of curiosity?

I've attached my thyroid test history over the last year for further context and you can see that when my frees were optimal, the TSH was at it's lowest (which is why the GP hasnt left me alone despite me feeling fine). So this would make sense now i know that anytime T3 is used, TSH will be suppressed. I need to find more info on the TSH thing so i can go armed to my GP.

Im starting to feel the effects of coming off T4 now (just over 6 weeks) as my hips and legs are becoming very tired/painful, the same level of exercise is a struggle and slower bowels again. Which isnt shocking looking at my bloods either, like you say, im under medicated and i feel it now.

I've read that T3 alone isnt generally considered to be the best option, again i know it's personal, but seeing as my free T4 is very low & how im starting to feel now, i feel the best thing to do is to go back to what i was on before when my free's were optimal...which was a combo of 50mcg T4 and 37.5mcg of T3. I've started taking another 6.25mcg of T3 before bed as it helped with with withdrawal effects and anxiety at night so i will adjust my overal t3 when adding back in T4 as it sounds like i generally take a way higher dose of T3 than usual when on a combo treatment, per the other comment on my post 🤔 but then again, my test results havent shown ive ever been overmedicated in terms of free's.

ive had hashimotis for 10 years now and i still find this medicating and GP testing a battle - as we all do here it seems 😑

thanks for your reply!

screenshots of blood test results over the past year

[greygoose in reply to purplejuicy]

The majority of doctors believe - or say they believe - that low TSH affects hearts and bones, and therefore there are a lot of articles out there saying just that. But one here, we had our own researcher who published a lot of reasearch saying just the opposite: diogenes. If you look on his profile, you will find a lot of research and discussion on that subject:

healthunlocked.com/user/dio...

[Stourie in reply to purplejuicy]

please don’t worry about your tsh. Mines has been 0.01 for more than 10 years because of taking t3 alongside my t4. My new doctor phoned me last year about my tsh but when I said it had been that low since starting t3 around 2011 he looked back my notes and said ok and marked my notes that would let the other doctors know. Jo xx

[SlowDragon Administrator]

Wether T3 only suits you is trial and error, but likely to need higher dose if on ONLY T3

TSH is frequently low or suppressed when adequately treated on even very low dose T3 alongside Levo

And if on adequate dose T3 only TSH frequently completely suppressed

On mainly Levo plus small dose T3 typically T3 dose is between 5mcg to 20mcg per day…..not often need higher dose when taking levothyroxine as well

Aiming for Ft4 and Ft3 at roughly 70% through range when testing as recommended (see below)

So you were on high dose T3 and lowish dose levothyroxine before reducing Levo

A) ESSENTIAL to test and maintain GOOD vitamin D, folate, ferritin and B12

What vitamin supplements are you taking

What were most recent vitamin results

B) Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test

How old are you thyroid levels often change around or after menopause

[purplejuicy in reply to SlowDragon]

HI there, thanks for the reply!

Going by what you said about optimal free's being within 70% of the range, you can see that i achieved that (almost) when i was on a combo of 50mcg T4 and 37.5mcg T3. So although you're suggesting im on a much higher dose of T3 than normal, i felt good and my results show i wasnt overmedicated so i can only assume it's safe for me to go back to that.

I honesty dont know how the GP will react to me taking T3 and wanting to continue as i am and whether they'll refuse to prescribe T4 anymore?! has this ever happened? Can they even do that??

I did not split my T3 dose the day before testing, i didnt know about that tbh. I just took it as normal the morning before so it was at least 24 hrs since my last dose by the time i had the test.

in terms of vitamins, i was on the low side for ferritin back in june but not deficient and i know my vit D is good. I take b12, zinc, selenium, magnesium glycinate before bed and other stuff such as probiotics, collagen, cordyceps, chlorella, vit c sometimes...im a qualified nutritional therapist so i know about this and eat/drink/do very healthy 90% of the time.

Im 37 so i'd hope im not peri-menopausal just yet!

blood test results

[SlowDragon Administrator in reply to purplejuicy]

I did not split my T3 dose the day before testing, i didnt know about that tbh. I just took it as normal the morning before so it was at least 24 hrs since my last dose by the time i had the test.

So all Ft3 results are falsely low

T3 doesn’t stay in blood for long after taking it

What was Ft4 result on only 50mcg levothyroxine

whether they'll refuse to prescribe T4 anymore?! has this ever happened? Can they even do that??

You may need to get Levo on private prescription if GP won’t continue

Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists who will prescribe T3

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations so that might eventually transfer to getting T3 on NHS

thyroiduk.org/contact-us/ge...

[Meno56]

I’m also on split dose of T3/T4 but 12.5mcg/100mcg per day & self source my T3. My GPs initial response when I told him I was taking T3 on top of 125mcg T4, was to reduce my T4 prescription to 100mcg which I haven’t needed to increase back again, but I think I’d have problems doing that, as my T3 is suppressed (but way lower than yours ~ 0.04!) and my GP is v sensitive to TSH. T3 will do that and an endocrinologist would know that, but GPs rarely do.

It seems to me, if a person had hyperthyroidism and way too much active thyroid hormone, with suppressed TSH, that could likely do damage to your heart from racing and your bones might suffer from your entire metabolism running much too fast. When we are medicated the only levels that should be important are the FT4 and FT3 to get to a point where we feel good and usually within the ranges. I’d only be concerned about considerably higher than over range FT4 & FT3 levels for something like osteoporosis - TSH does nothing in itself, other than signal more or less of thyroid hormones. But we are all different and I assume some on this forum may well be fine at over range levels!

Hope you get back to feeling great again!