T3 and me 7wks in.Thank you for all the knowled... - Thyroid UK

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T3 and me 7wks in.Thank you for all the knowledge and support

NWA6 profile image
NWA6
9 Replies

So it’s been 7wks since I added t3 to my Levo. I celebrated my blood test results by going dancing with with my girlfriends and not getting home to till the ridiculous time of 4.30am 🤪 I never thought I’d dance again! IT.WAS.AMAZING! 😂 The fact that I’m still recovering slightly today is neither here nor there, I’m pretty sure that’s just my normal middle aged body groaning 😬

TSH 0.03 ( 0.3-5) previously 0.35

FT4 16 (12-20) previously 20

FT3 4.8 (3.5 - 6.5) previously 3.1 (3.9 -6.8)

Vit D 96 previously 26

For 10yrs I have been increasing my Levo in reaction to symptoms and increasing TSH levels. My Dr’s haven’t been great with it all and labelled me a ‘non compliant patient’ saying that I am the one to blame for not being ‘stable’

Then increasing my Levo didn’t work. It gave me Hyper symptoms but no T3 tests done during that time as I didn’t know any better. But my T3 has never even hit the 4’s in all my history ( I have 7 full thyroid test since 2014)

Long story short. I’m not the best converter. No amount of Levo was going to work for me. I was on 175mcg for nearly a year before it went wrong then on different amounts. Before T3 I was on 175 x 2 and 150 x 5

Now I’m on 150 x 2 and 125 x 5 and 15mcg T3

I didn’t have any negative reactions to starting t3. I just felt amazing from day 1. So I changed my schedule to 10mcg in the morning and 5 at night.

So after 7wks I have been thinking that I could add in another 5mcg as I still have constipation and I’ve just gone through my first period as an ‘established’ combo user. My period was pretty horrendous. Longer. More painful and with a 24hr mild migraine.

Every other symptom of being under medicated is gone. I still have weight to loose but quite frankly after the year that I’ve had I’m just enjoying the food and wine 🥳 I’ll get to fitness soon but 4kg just vanished after 10 days on combo, bloat dealt with, I can feel comfortable with a little jiggle 🤪

So as a poor converter is it better to add a bit more T3 rather than t4?

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NWA6
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9 Replies
shaws profile image
shawsAdministrator

Well, we are all different and if I take T4 I am far more unwell, whilst on T3 alone I'm fine. It is T4 (levo) that is the inactive hormone and supposed to convert to T3 (the only Active thyroid hormone) and if you're a poor converter of T4 why take it?

Millions seem apparently good converters of T4 into T3 but there are exceptions.

NWA6 profile image
NWA6 in reply toshaws

Hey Shaws. I’m not a great converter but I do still convert. Blood tests always in range, apart from 2

2014 - 3.8 (3.5-6.5)

2014 - 3.9

2016 - 2.5

2019 -3.5

2019 -3.1

T4 has never made me unwell, it just wasn’t enough on its own. It’s easier to get atm and I’d ‘live’ if my T3 source dried up so I don’t want to give it up atm.

galathea profile image
galathea

Well there seems littke point in using a storage hormone if you cant convert it. Some. Schools of thought say you need t4, whilst others dont.

Makes sense to keep your t4 at the bottom end of the range to avoid all the rt3 issues that can arise, and keep your t3 levels where you feel fit. The guidance in the national formulary, says work up to 60 of t3, so raising to 20 might suit you.

Just watch that the ft3 doesnt go over range......

Well done you for working it out so far!

Keep dancing. Xx

NWA6 profile image
NWA6 in reply togalathea

Thanks galathea. I do convert just not efficiently enough. I think I have wiggle room for FT3 to rise and I think 16 is about my ‘norm’ for t4 so I’ll leave it there and raise my T3 in take because it hasn’t raised that much in the 7wks so I don’t think there’s much chance of going over with a small increase. I’ll see my private endo next month and make the decision.

My NHS endo is refusing treatment but still wants to see me as she’s intrigued. I do another post with her latest letter.

Angel_of_the_North profile image
Angel_of_the_North in reply toNWA6

Is it worth wasting your time to indulge her curiosity when she hasn't helped you?

NWA6 profile image
NWA6 in reply toAngel_of_the_North

Yes that’s definitely a view point but she’s curious and she’s playing it safe. I think those of us that can help ‘educate’ that T3 is not harmful when prescribed to the right people for the right reason. I need her to ‘see’ my progress. I’m strong enough ✊🏻 I need to help others 🤗

Murphysmum profile image
Murphysmum

I’m reading your post with great interest.

I too am on week, erm..... 10 or so of added T3 and life is soooo much better!

Initially I had horrible headaches and so decreased right down to a quarter of 5mcg twice a day, slowly increasing to my prescribed 10mcg.

It was great! The motivation, the energy, no symptoms - all the weird twanging pains here and there, the tinnitus, the muscle weakness - all gone.

However, I’ve now added around half an hour of quite intense strength exercises into my day and whilst I’m losing weight and building muscle again (I never want to feel like I’m losing strength again), symptoms returned. Most noticeably some muscle weakness and a strange pressure in my neck and head.

Yesterday increased my dose to 5mcg x3 and so far today, all good!

I know we’re advised not to start launching into exercise etc but I used to be so fit/strong and so frustrated watching myself deteriorating that I just got stuck in, albeit at much lower levels than I would have been capable of 18 months ago.

Hopefully the increase will do the trick. There was room in my most recent bloods for it and my T4 level has remained around 18 which seems to work for me.

I too was a “below par” converter and the combo seems to work for me.

Fingers crossed it keeps working for us 😁

NWA6 profile image
NWA6 in reply toMurphysmum

That’s such great news!! I too used to be very athletic and toned but I’m 2stone overweight now 😩 but overall weight hasn’t been my main issue with being under Medicated, I’m still only a size 12 (although my ‘shot putter’ thighs may prefer a 14 but my waist is still an ‘11’ lol)

My old gym is closing down for a 2yr refurbishment so I’m on the hunt for a new one.

When I knew I was going out dancing on Sunday night, I took my 10mcgs as usual in the morning and then my 5mcgs at 7pm and then another 5mcgs at 5am and then my usual morning dose at 10am as I knew I’d sleep in. So effectively I took another 5mcgs in that 24hr period. Dancing for 4/5hrs when I’ve done no exercise for nearly a year was going to be a strain 😬 But all was good.

With my t3 still being in the lower range and a couple of symptoms still persisting I think adding exercise might set me back a bit. I usually run (only way to slim my thighs) and weight train.

Murphysmum profile image
Murphysmum in reply toNWA6

I was never that athletic - couldn’t run to save myself! - but I was always on the go and working as a Gardner/designer so strong. Not now. But at least feel like I’m getting there again. T3 has made such a difference.

Like you, I still need to “play” about with dose and timings to find what works but it’s a great start.... go us!

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