Starting T3 tomorrow. Advice?: Hi all, I saw the... - Thyroid UK

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Starting T3 tomorrow. Advice?

MaiteFrench profile image
28 Replies

Hi all,

I saw the endocrinologist today for the first time and since I have had a thyroidectomy he agreed to give me T3 with my T4 as I am suffering more and more from hypothyroidism. I was on 150mg of levothyroxin up to today.

Tomorrow I am to take 100mg of levo and 20mg of T3. What am I to expect from the swap? Thanks for your feedback.

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MaiteFrench
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28 Replies
MMAndrea52 profile image
MMAndrea52

Hi i had TT last Thursday and iv been hypo since I left the hospital. How long after your TT did they agree to give you T3. Sometimes I feel ok’ish slow and no energy but ok. Others like just before I am thrown in to a full on crying jittery anxiety attack. Is it too soon for them to consider T3 for me. I sincerely hope you feel better soon. I suffered years on off hyper but never been through anything like this

MaiteFrench profile image
MaiteFrench in reply toMMAndrea52

My thyroidectomy was done 17 years ago. If yours is that recent give yourself time. You'll need it. Why did you have to do it though? I had a cancer. Did you?

MMAndrea52 profile image
MMAndrea52 in reply toMaiteFrench

I had an enlarged nodule on right side, and several on both sides. They said I had 30% chance of getting cancer. So we’re going to do hemithyroidectomy. But then my levels shot up sending me hyper. Considering I had this problems years ago in my 30’s ‘graves’ the endo said they needed to take the Whole thing out. Or would keep happening, I questioned this, but they assured me they could control my levels better with no thyroid rather than half a thyroid. I swear a strong coffee before sent me into that v bad anxiety attack as was ok, I don’t know. I’m going round the bend I think

MaiteFrench profile image
MaiteFrench in reply toMMAndrea52

Strange. They didn't even do a biopsy? Anyway, give yourself time now that you've just been operated to go back to some normality.

Clutter profile image
Clutter

MaiteFrench,

I recommend you halve the tablet and take 10mcg T3 with 100mcg Levothyroxine and the second 10mcg dose at bedtime.

You might feel a faster heart rate/pulse around an hour to 90 minutes after taking a T3 dose. This will usually subside within another hour or so. If you do get palpitations they will wear off in a few hours and you should skip the next dose until they do.

Any adverse effects you might experience will be listed on the patient information list supplied with your medication.

MMAndrea52 profile image
MMAndrea52 in reply toClutter

Half the levythroxine or the T3 if I get it do u mean?

Caesard profile image
Caesard in reply toMMAndrea52

Clutter gave you a great advice. I've done the same when introducing T3, with half of the T3 dose, even for a few days. After that the remaining part was introduced in a separate daily dose and I still take it this way.

Personally I've found that a nightly dose helps me sleep better but I've understand it's not the same for everyone.

You could expect some ear noise when you pop the first t3 but in my case dissipated after a few minutes. No palpitations or irregular HB at all, but others reported it. But a lot of mental clarity...

T4 you can have in a single dose, no worries.

MaiteFrench profile image
MaiteFrench in reply toCaesard

I am so much looking for the mental clarity!! Yes, in 2 takes for T3 and 1 for T4. Thanks.

Clutter profile image
Clutter in reply toMMAndrea52

MMAndrea52,

T3 has a short half life so it is recommended to divide dose 2 or 3 times daily. As MaiteFrench is prescribed 20mcg T3 I recommended she divides it into 2 x 10mcg doses.

You will need to be taking Levothyroxine for a few months before you are optimally dosed. If FT3 remains low you may benefit from the addition of some T3. It won't necessarily be 20mcg. It will depend on your level of FT3 and what the prescribing endo thinks is appropriate, always assuming the s/he is willing to prescribe T3.

MaiteFrench profile image
MaiteFrench in reply toClutter

He has prescribe T3 all by himself considering hypo and no thyroid. I'll divide the T3 in 2, yes.

MaiteFrench profile image
MaiteFrench in reply toMMAndrea52

Half the T3. Levo is always in 1 take.

SlowDragon profile image
SlowDragonAdministrator

Have you had vitamin D, folate, ferritin and B12 tested. These need to be at good level first ideally

Personally under endo I started on very small split dose (2 x 1/8th of tablet first 3 days) and stepped up to 2 x 1/4 tablet. Dropped T4 only by 25mcg.

After 6 weeks blood test, endo increased dose to full 20mcg tablet, in divided dose of 10mcg, 5mcg and 5mcg. No further drop in T4

I know lots of people on here just take whole T3 dose in one go. But I followed endo advice on splitting dose and this seems to work for me.

MaiteFrench profile image
MaiteFrench in reply toSlowDragon

You're right about splitting. He said so too. That was my idea. I am to see him again within 3 months to see how it is going. Ferritin and Vitamin D were tested. Not the rest. I had to fight for those already!!

SlowDragon profile image
SlowDragonAdministrator in reply toMaiteFrench

You can get B12 and folate tested privately

Medichecks or Blue Horizon

Or just supplement B12 sublingual lozenges and vitamin B complex (but stop B complex 3-5 days before any blood tests as biotin can falsely affect test results)

Vitamin D - ideally around 100nmol

Ferritin half way in range. If you like liver eating once a week will keep it good level

My T3 doses - 6am, noon and 6pm approx and Levo at bedtime

MaiteFrench profile image
MaiteFrench in reply toSlowDragon

I have been supplemented in Vitamin D because I asked for it so I'm fine and over 100. I take a vitamin complex already for the rest. It might not be enough though. I'll battle with the GP to get the rest. Ferritin is too high even though I have anemia. Good idea the liver, I had forgotten about it. I'll get some. Thanks.

Thank you for the time for T3. I'll make sure to split the dosage.

Nelly18 profile image
Nelly18

Let us know how you get on MaiteFrench. I had TT 15 years ago and am exploring possibilities to try and improve hypo symptoms. My Dr has agreed to put my questions to an endo. Good luck and I hope it works for you.

MaiteFrench profile image
MaiteFrench in reply toNelly18

Why don't you put the question to the endo yourself? Ask to see one and talk about your own health yourself. It always works better that way. You know yourself better than anybody. Good luck to you too.

Nelly18 profile image
Nelly18 in reply toMaiteFrench

It would mean going private which I can't afford. GP has said she can't refer if my TSH is normal. It's so frustrating and she can see that but says that's how it is. Grr.

MaiteFrench profile image
MaiteFrench in reply toNelly18

That is absolutely not true. Change GP and insist to be referred to a specialist ie an endocrinologist. GPs are generalist by essence hence they cannot know everything. You have to fight for your life here unfortunately but if you fight it works. Courage

I had my TT in 2015 before that I had no symptoms of Hypo. After the first 7 months on Levo I felt so ill and in pain that I joined this site and started myself on NDT. After 18 months of different amounts I still felt fuzzy headed, no other symptoms just not my old self.

In the last three weeks I have started myself on T3. I am now taking at 6 am I x NDT + 1/2 T3 and then at 2.30pm take another 1/2 of t3. This it what clutter suggested.

I am now feeling so happy and clear headed I cannot believe the difference. After only three weeks I am keeping my fingers crossed. I hope that you feel better when you have sorted out your dose.

Caesard profile image
Caesard in reply to

Got the chance to test your levels too? What do they look like? Significant change compared to NDT onlly?

Mary76mary76 profile image
Mary76mary76 in reply to

Hi bunny jean., may I ask how are you doing now after 2 months? I am one month on ndt (thyro gold) I am happier and more clearheaded but still energy is lagging behind. I am interested to know how long you were on ndt only? And how much difference t3 made to you? Thank you

in reply toMary76mary76

Hi I was on NDT (thyroid s) only from June 2016 to October 2017. I had my TT in Oct 2015 before that I was not on any medication my thyroid was performing well but because of a growth inwards I had to have it removed. I was then put on Levo for 8 months which made me ill and pains everywhere.

I then joined thyroid UK site and asked for help. I started on one grain and eventually finished on 3 grains per day.

Although I felt much better i.e. no aches or pains I still felt tired and had brain fog. I had my bloods tested in Oct 2017 and my FT3 was 1/3rd over the top limit.

I decided to try T3 so I am now on 1NDT + 1x 25mcg T3 per day. My head feels much clearer but I am still tired. I will probably adjust my dose upwards a little and then get tested again. I have no gut problems so I am lucky. Sorry for the long post.

in reply toMary76mary76

The fact is I was feeling great but during the last two/three week I seem to be slipping backwards.

Mary76mary76 profile image
Mary76mary76 in reply to

Thanks bunny Jean for your reply, . I am a month on ndt but the second week I was slipping and I got a lot of help from this forum which really helped me. So post your situation on this forum now as it's harder to figure things out when you start to slip. Good luck and take care

in reply toMary76mary76

OK Thanks

bardak profile image
bardak

Hi MaiteFrench, can you please say or pm me who and where the endorsement is? I had a TT as well and have been denied liothyronine by my endo.

MaiteFrench profile image
MaiteFrench in reply tobardak

Sorry I missed your question. Sending you the name in PM.

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