Am wondering if T3 actually suits me: Lots will... - Thyroid UK

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Am wondering if T3 actually suits me

Jefner profile image
26 Replies

Lots will remember me in that my T3 levels have been very low for a few years because I am a bad convertor. Many of you said that is why I probably feel so ill all the time and to increase it but I was reluctant to because of the results when I did, which is probably why I just stayed on 10mcg. Took me a while but I found my old results of increasing by only 5mcg.

I knew I had recorded it somewhere in that a small increase of 5mcg I made back in 2016 (when I first started t3) had sent me over range and some of you found it hard to believe.

I also remember my Functional Medicine Practitioner saying that T3 can be a stimulant and may be contributing to my anxiety. My Endo at the time was also reluctant to start me on T3 despite him knowing I was a poor convertor, because of my extremely high cortisol levels, but I went ahead anyway on the advice from the Group because you guys are more knowledgeable.

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***26th July 2016**** - after adding 10mcg t3 on 30th June with 100 Levo

CRP 0.2 <5.0

Ferritin 100.4 (20-150)

FT4 19.38 (12-22)

FT3 4.74 (3.1 - 6.8)

TSH 0.51 (0.27 - 4.20)

T4 Total 115.3 (64.5 - 142.0)

Upped T3 to 15mcg 75 Levo on 2nd August. Left clear 24hrs from Levo and 12hrs t3 before doing bloods on 18th August.

TSH 0.97 0.27 - 4.20 IU/L

Free T4 13.77 12 - 22 pmol/L

Free T3 H 9.34 3.1 - 6.8 pmol/L

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I know the results are from some time back but now comes the time when my new Endo may suggest I increase my T3 again on Monday and I could be back in the same situation as I was in 2016 with going over range again. If he suggests I increase, which I believe he will, then it will be a few weeks away from retesting but what happens if it shows I am over range again?

Could going over range just upping by 5mcg indicate that it just doesn't suit me?

Where do I go from there?

I have spent so much time in the past researching and learning about my thyroid/adrenals/Hashi's issues but all that time seems wasted because I am no better off in the way I feel. It feels like everything I have tried I have failed at. I don't spend the time doing it anymore and haven't for a long time because I became obsessed for answers and more paranoid which is why I have been away from the Group for so long. It just fuelled my anxiety. But I am just like you all, I just want answers so I can make things better but it hasn't happened and I am now scared it's never going to happen

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Jefner
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26 Replies
Buddy195 profile image
Buddy195Administrator

I am extremely sensitive to changes in medication and have ended up in A and E when I tried to increase my dosage too quickly (massive anxiety, tremor, fast pulse and palpitations). I now only increase Levo by 12.5mcg (alternate days at first) and if I’m adjusting T3, I cut a 5mcg tablet into quarters, adding a quarter of 5mcg per day until my body tolerates this increase. Some of us are more tortoise than hare when making adjustments.

Jefner profile image
Jefner in reply toBuddy195

I don't want to go in blind with my new Endo. I want him to know that I know stuff too so need some suggestions to throw his way. Any ideas from you as to what to ask him or suggest?

These are my latest results from last month. I am on 125mcg Levo and 10mcg T3

TSH L 0.04 0.27 - 4.20 mU/L New range & unit

Free T4 18.3 12.0 - 22.0

Free T3 3.89 3.1 - 6.8 pmol/L New range

If he increases me by 5mcg T3, should I be lowering my T4 as well or stay on 125?

Do you split dose your T3 as well? If I do that permanently then not sure how i am going to fit all doses in between eating as I now know I need to eat little and often to try and keep my sugar levels even

I have messed with my T3 since the results, ie. missing a few doses because of the bad reaction I had to Mercury Pharma. Have only been back on my original brand for a week plus I also changed to splitting my dose into two which doesn't appear to be helping as I had hoped

Buddy195 profile image
Buddy195Administrator in reply toJefner

From my own experience it is very much trial and error Jefner, as some members can tolerate FT4 higher in the range, others like me cannot. I find if my FT4 is very high in the range, my anxiety levels spike, whereas I’m fine with FT3 high in the range. I currently take 75 mcg Levo plus 10mcg Lio in the morning and a further 5 mcg Lio early afternoon. It has taken me a long time to find a level of medication that suits me/ timings that work best.

Jefner profile image
Jefner in reply toBuddy195

omg it's going to be a very long lonely road for then trying to sort my dosage out, when and how I take it

Buddy195 profile image
Buddy195Administrator in reply toJefner

You are right, it can take a very long time to work out which combination of Levothyroxine and Liothyronine is best for you, plus if a single or split dose suits you better. Many members here understand how difficult the process of optimising thyroid levels can be. Do try to be kind and patient with yourself.

SlowDragon profile image
SlowDragonAdministrator in reply toJefner

I would definitely try splitting your T3

Try setting an alarm about 6.30-7am …..taking 5mcg dose T3 …..then go back to sleep

Second 5mcg T3 dose early afternoon

Third 5mcg T3 dose at bedtime

Do you take levothyroxine waking or bedtime

Personally I also split my levothyroxine ….half daily dose levothyroxine at 6.30am with 5mcg T3 ……and remainder of levothyroxine at bedtime

Are your vitamin levels optimal

Gluten free or dairy free?

Jefner profile image
Jefner in reply toSlowDragon

I don't usually fall asleep until around 4-5am the last few months because of all the building works noise going on next door and get up around 1-2pm.

I usually set my alarm for about 10am, take my Levo and full 10mcg T3 but last 2-3 weeks I have been splitting my T3 dose. 5mcg at 10am with my Levo and then the other 5 at around 6pm. It's never even been suggested to split my Levo! Interesting!

I am still only on the 10mcg T3, but pretty sure Endo may put me up to 15mcg. Is splitting doses worth mentioning to him on Monday?

Vitamin levels are optimal

Gluten free since 2016 but not total dairy free, I do partake in a little cheese and tiny bit of skimmed milk in my scrambled eggs. First meal of the day ie. breakfast is usally around 3pm for me at the moment

Jefner profile image
Jefner in reply toSlowDragon

maybe permanently splitting my T3 dose is the way forward because of my results back in 2016 when I increased by only 5mcg and it sent me over range AND I was taking it all at the same time. By going over range, it could be that I am sensitive, so split doses may work better for me?

SlowDragon profile image
SlowDragonAdministrator in reply toJefner

it’s all trial and error what suits each person

Personally I can’t tolerate taking T3 as single dose or even as only 2 doses per day.

I discovered by accident that 3 doses at roughly equal 8 hour intervals was better than the original time suggested by endo of 6am, noon and 6pm

I only started splitting levothyroxine about 8-9 months ago …..after seeing increasing numbers of members are splitting levothyroxine dose

I find splitting levothyroxine significantly better

Jefner profile image
Jefner in reply toSlowDragon

When you say you find splitting T4 significantly better. In what way do you mean and did taking one T3 dose make you feel and what were the changes you noticed in split dosing?

I started splitting my T3 about 4 weeks ago,. Half at 10am with Levo and go back to sleep and the other dose usually around 6pm. With the Mercury brand I was given on my last script I felt really ill so it was difficult to know whether splitting doses was any good for me as I felt really ill every waking hour of the day instead of the anxiety starting to ease by early evening.

Now I am back on my Morningside brand for the last week I must admit I have noticed when I take my evening dose, I get missed heart beats and feel jittery and stuff and my anxiety is still around. As I said come early evening and the later the night goes my anxiety seems to subside and most of the time I feel so much better. Whether it's still the effects of the Mercury Pharma and missing some doses because of how bad I was on it, I don't know. As I said only been back on my Morningside for around 8 days now so may still be having side effects and also T3 may have gone down slightly because of missed doses?

At the moment it's difficult to know whether an evening dose is right for me. I would much prefer the anxiety subside like it used to do before that damn MP made me ill. It just feels too stimulating for me. Just wondering what my Endo will make of it.

To be honest I just don't think it suits me :( but what's the alternative

SlowDragon profile image
SlowDragonAdministrator in reply toJefner

You can read my profile….it’s been a very long journey

Jefner profile image
Jefner in reply toSlowDragon

i have no words but omg, just omg. How in the hell did you find the strength to carry on. You must love life more than I do. I am so ready to give up. It doesn't help either fighting this completely on my own with no real friends to turn to. Being stuck in my flat ruminating, feeling ill, no-one to talk to or feeling up to going out because of my severe anxiety and panic when I do try in the day. It's no life, just an existence. May I lean on you for some support and advice

TSH110 profile image
TSH110 in reply toJefner

NDT?

Jefner profile image
Jefner in reply toSlowDragon

just had someone on a Hashi's page on FB tell me that my thyroid results show that I am on the verge of hyper!!!!!!!!!!!!! Ermmmm if anything it's the other way around isn't it? lol

These are my latest results from last month. I am on 125mcg Levo and 10mcg T3

TSH L 0.04 0.27 - 4.20 mU/L New range & unit

Free T4 18.3 12.0 - 22.0

Free T3 3.89 3.1 - 6.8 pmol/L New range

Lalatoot profile image
Lalatoot

jefner if you can get your t3 in 5mcg tablets then it is easy to increase in 2,5mcg. It is all trial and error. I only need 7,5mcg t3 daily. This brings my t3 up from 16.7% to 72%. You maybe need a higher dose of levo and lower dose of t3.

Jefner profile image
Jefner in reply toLalatoot

but I have been told by MOST I need more T3 and every result I have pretty much shows that

Jaydee1507 profile image
Jaydee1507Administrator

That's a really odd result that showed your FT3 over range. It's weird in that I believe normally speaking your TSH should have been suppressed by a result like that and it wasn't. Might have been better to retest a few weeks later but thats history now.

It's not long now before you see the Endo, I really hope it goes well for you. You definitely need a bit more T3. Wishing you luck, let us know how it goes.

Jefner profile image
Jefner in reply toJaydee1507

yeah I thought that too as others did for such a small increase. It maybe that I am quite sensitive to it and splitting doses may be the way to go?

Jaydee1507 profile image
Jaydee1507Administrator

Splitting doses is definitely good for me, also small increases to hopefully reassure you.

Be really sure you don't take your T3 just before the test too. I think 8 hours is the recommended spacing so you get stable blood levels.

You don;t need luck for the Endo appointment, I'm sure it will be a really good thing for you. I'll keep everything crossed!

Jefner profile image
Jefner in reply toJaydee1507

yes, I took my last t3 dose for my last test about 8-10hrs before

Before you split dose and took whole, how did it make you feel?

CoeliacMum1 profile image
CoeliacMum1

So I’m going completely off topic here and ask if any possibility of pre/peri or post menopause and any chance this is contributing to anxiety. I definitely know did for me and you mentioned high cortisol… oestrogen helps regulate cortisol. Just an area to consider and progesterone is a calming hormone too and if always stressed decreases and usually it’s the first hormone to decrease.

balance-menopause.com/

You’ll find good information via that link… there’s areas to fill in and take to your GP/consultant maybe point them to other areas, if it’s a possibility… even pre & post menopausal women can be helped… people consider hrt is just for the 45-60 range but not at all.

Jefner profile image
Jefner in reply toCoeliacMum1

I am on hrt patches and have been for few years although I am not at the therapeutic dose. I had to forfeit sorting that out to concentrate on my t3

JaneChapple profile image
JaneChapple

Hello

Im in a similar situation to you. Ive tried various amounts, splitting doses.

My blood test result came back at 12.7 on 62.5 and 12.4 on 50mcg respectively,

where my FT3 only dropped to 12.4?! Myvlast result for FT3 came back at 4.3 so too low. I find it difdicult to go by symotoms and signs and symptoms as per Paul Robinson advice as I have essential tremor, so that doesnt help either!

Ive tried various ways to split the dose. Now I am teying three doses with 8 hr gap and one being taken at 3am. I have to say I did try this once before but wonder if I gave it a long enough trial, so giving it another shot. Its worth reading CT3M book by Paul Robinson, he has several and a FB page. He is a patient/writer who self treats with T3 only.

im wondering if compounding T3 isthe other option,butthats probably going to cost me more!

Im going tocget a salva cortisol test as my serum blood test result came back at 860 which dr diled as normal?!

Good luck with your endo, I hope he listens as mine certainly doesnt andI have acall with him on Monday!

Janexxx😩☺️❤️

Batty1 profile image
Batty1

Have you tried to split your meds by taking them twice a day instead of once a day ? I had to do this because I would get anxiety and energy crashes from taking my T4/T3 once a day so I started splitting my dose and my anxiety went away and my energy crashes aren’t as bad.

Jefner profile image
Jefner in reply toBatty1

i have been splitting my T3 dose for around 3weeks now and if anything I feel a lot worse

Batty1 profile image
Batty1 in reply toJefner

Thats not good and its so different what works for each person…. Good luck

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