A week into T3 update : So I’ve been taking... - Thyroid UK

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A week into T3 update

HollieBerry
HollieBerry

So I’ve been taking Liothyronine now for a week and I must admit I don’t feel great. I took the advice of the endo and took the dosage of Liothyronine as advised - 10mcg twice a day but instead of reducing my levo to 50 like he said I only reduced to 100 (was on 125) I know that advice given on here was to start on less of the T3 but the tablets were so tiny I couldn’t really split them.

Physically I feel very weak and have been tired - needing daytime naps. I’m quite breathless and my muscles burn with little exertion.

Is it normal to feel worse before I feel better? Could it be the 25mcg reduction of levo? I’ve read that T3 can make you feel jittery and anxious but I’m not getting any of that, so could it mean I need more T3?

Thanks for any advice offered x

34 Replies

Do you have any blood test results yet?

HollieBerry
HollieBerry in reply to Zazbag

Not yet, will do in about 5wks x

shaws
shawsAdministrator

I take T3 only and am well. That doesn't mean that it will have the same effect on others that it has upon me.

I take my dose of T3 once daily on a fasting stomach with a full glass of water, when I get up.

I don't eat until one hour has elapsed. I have been able to lower my dose just by going by my symptoms and how 'I feel' but everything has been done slowly.

T3 has restored my health and all of my previous symptoms occured when I was given levothyroxine. This is a link that may be helpful:

T4 is found in the body in 2 forms: free T4 and bound T4. Free T4 travels into body tissues that use T4. Bound T4 attaches to proteins that prevent it from entering these tissues. More than 99% of T4 is bound. Because T4 is converted into another thyroid hormone called T3 (triiodothyronine), free T4 is the more important hormone to measure. Any changes show up in T4 first.

urmc.rochester.edu/encyclop...

verywellhealth.com/interpre...

Our vitamins and minerals also have to be optimal, i.e. B12, Vit D, iron, ferritin and folate.

Starting with 20 mcg daily sounds too much. Starting low and slow is the usual advice based on experiences

You can buy pill cutters quite easily. Starting with 5mcg could be better for you.

Do you have results with ranges ? Sometimes there is little or no need to reduce T4.

Edit: Have been re-reading your earlier posts - so your levels of B12 - Folate - Ferritin - VitD will not have improved in 9 days in readiness for a successful inclusion of T3. Could this be the problem ?

HollieBerry
HollieBerry in reply to Marz

I’m not really confident in going against the endo’s instructions, I’d feel too anxious to ring and say “actually that’s far too big a dose so I’m going to start off smaller” I’ve never even met the endo who prescribed it. He literally just put brief instructions in a letter.

Can I ask why 20mcg would be considered too much? What adverse effects can it have?

It’s really bad that the endo didn’t even mention my vitamins? I can’t fathom how this poor level of care goes on. It’s disgraceful.

Marz
Marz in reply to HollieBerry

You say you are not feeling good - so it's possible it could be the T3. I have been reading posts here since 2011 so have learnt a great deal from others who know more than me !

I have been T3 only for 6 years - so a wee bit of experience too !

Again reading here - it is mentioned daily that the Medics know so little about vitamins and minerals. We become used to taking care of ourselves to find optimal health ....

HollieBerry
HollieBerry in reply to Marz

I really hope that the lack of understanding from endos is brought to the attention of the higher powers!? They need to get on this forum and listen to the people 🙏🏼

shaws
shawsAdministrator

I have never had any symptoms from taking T3. I had umpteen when on T4.

SeasideSusie
SeasideSusieAdministrator

HollieBerry

As Levo has a half life of 7 days, the 25mcg reduction in your dose is unlikely to be felt in any way yet, particularly as you have added T3 at the same time. We should only change one thing at a time so if you were going to reduce your Levo you should have given it a couple of weeks before adding the T3.

You were given a lot of sage advice in your previous post about needing optimal nutrient levels before adding T3 and not starting with the full 20mcg T3.

As for adding the full dose of T3 I think that was a mistake. You say

the tablets were so tiny I couldn’t really split them.

How tiny are you talking about? My T3 tablet is 6mm diameter and I cut that into 4. My 50mcg Levo tablets are 5mm in diameter and I also cut those successfully. What were you using to try and cut the tablets? I use a pill cutter and have no problems with that, others use a sharp craft scalpel successfully.

Physically I feel very weak and have been tired - needing daytime naps. I’m quite breathless and my muscles burn with little exertion.

Is this new or were you like this before? Breathlessness can be low ferritin/iron.

I’ve read that T3 can make you feel jittery and anxious but I’m not getting any of that, so could it mean I need more T3?

Certainly not at this stage. As explained before, changes should be slow and gradual, with about 6 weeks between dose changes and retesting to check levels. It took me many, many, months of tweaking Levo and T3 doses and it was probably well over a year before I found what suited me best. I never felt any effect of T3 like some people do, some feel different almost instantly, others don't, with me it was a realisation months down the line that I did actually feel better than before and, of course, an improvement in my thyroid hormone levels.

I know, I haven’t done this in the ideal way - by getting vitamin levels optimal first, starting slower, keeping levo at full dose... But I feel under a bit of time pressure! They’ve given me a 3mth trial so with regards to vitamins, I didn’t feel I had time to delay starting the trial, as they are expecting me to do a blood test in 6 weeks. And with the T3 dose- I totally believe in the knowledge and experience you guys on here have, and I will take and follow what I can, but to certain extent I have to follow the plan that the endo has set out (and I know they’re often wrong) but I don’t have the confidence or knowledge to argue against his instructions. I feel worried about telling them I’m taking 100 levo instead of 50.... also means I’m going to run out sooner as they’ve already adjusted my levo prescription from 125 to 50 🤦🏼‍♀️

Come to think of it, the breathlessness was a symptom back in September when I discovered I had low iron, but I’ve finished the 3mth course of ferrous sulphate the doc prescribed, so I assumed that would have sorted me out.

I’m going to get a medicheck vitamin test when I get paid, it’s no good assuming is it.

SeasideSusie
SeasideSusieAdministrator in reply to HollieBerry

HollieBerry

but I’ve finished the 3mth course of ferrous sulphate the doc prescribed, so I assumed that would have sorted me out.

Not necessarily, it can take months for levels to improve and once optimal levels have been reached you have to find a way of maintaining them. Have you retested your iron panel?

No but I will do, next pay day I’ll get a full vitamin check with medichecks to see where I’m at x

SeasideSusie
SeasideSusieAdministrator in reply to HollieBerry

HollieBerry

The full vitamin check with Medichecks - if you mean their thyroid/vitamin panel - only tests Ferritin. If you mean the full iron panel then that is the "Iron Deficiency Test".

shaws
shawsAdministrator

I take T3 alone. I followed the advice on one of TUK's Advisers (now deceased) and he was an expert in the use of T3. He would only prescribe NDTs (natural dessicated thyroid hormones) - prescribed since 1892 (in various forms) or T3 only for patients who were resistant to 'thyroid hormones).

He himself took T3 in the middle of the night so that nothing interfered with its uptake.

I take T3 when I get up with one glass of water and wait an hour before eating.

I have no clinical symptoms but now take a lesser dose than I used to.

HollieBerry
HollieBerry in reply to shaws

I’ve heard a lot of people praising this NDT.... sounds really effective, but why is it so hard to come by? 🤔

I set my alarm at 7am for my first T3 dose and don’t eat breakfast or coffee till after 9am

I think it is quite normal to feel worse before feeling better, HollieBerry!

I followed my endos advice and cut T4 by 50% and added 2 x 5 mcg T3 all at once. I spent the first week feeling like I’d been hit by a truck. I started a symptom diary of sorts when I began the new medication regime, which I don’t write every day but ended up studying yesterday (day 28) so that I can get a sense of the changes over time. It might get a little better next week. I took a turn for the better on Monday, which would be day 27. I’m still not convinced this is the right dose for me, but it is starting to feel better than it did in the beginning. I had what I now know to be a hashis swing on days 8-12, which is a little disappointing - I thought I’d cracked it, but no! I guess it just takes time, but patience is hard to come by. I immediately noted that my sense of mental well-being improved with T3, though. Any difference for you?

Like you, I didn’t cut the levo before adding T3 mainly because I was terrified that I’d feel like the walking dead going from 100 mcg to 50 mcg a day and nothing else and because, therefore, for once, it suited me to take the endos advice!

I don’t cut doses, but we have a pill cutter for the cat’s steroids / painkillers, which we got from the vet years ago and has served me well in previous pill cutting experiments and works on very small tablets. I have seen them on Amazon, I believe. I think it inevitably means one half might be fractionally bigger than another, but I don’t think it matters hugely over the course of a day.

HollieBerry
HollieBerry in reply to Lotika

Thanks for the incite Lotika, so if you’ve done a month are you due for blood tests in around 2wks? Were your vitamin levels optimal before you started? After all the advice I’m hearing I wish I’d started mine long before 🙄 still, I’m hoping they’ll play catch up and maybe in a month they’ll be where they’re meant to be.

My mood seems quite good so far, I feel relaxed and content. It’s just my body that’s lethargic. But I am due on soon so that could be the cause.... having physical PMS symptoms almost 2 weeks before a period is a bit excessive/unfair though!?

Lotika
Lotika in reply to HollieBerry

Yes, blood test in two weeks - I can’t wait! My vitamin levels were NHS fine, but fractionally suboptimal for here on ferritin and vit d, so I am trying to do better on those. I’m glad about the mood; I’d say I’m about the same! 2 weeks of PMS is harsh! Were you like that back before you were hypo? I am beginning to get more period issues than I have had for 5 years - could be a return to the “old normal “ though; it’s been so long it is hard to remember properly!

SlowDragon
SlowDragonAdministrator

Easy to cut T3 into halves or quarters using craft scalpel amazon.co.uk/Modelcraft-Sca...

Vitamins must be optimal for levothyroxine and T3 to work

SlowDragon
SlowDragonAdministrator

Previous vitamin levels from September obviously all far too low

Serum B12 - 285 (180-640)

Vitamin D3 - 68.4 (>50.00)

Serum ferritin - 29 (28.00-200.00)

These need retesting

They need to be

B12 at least over 500

Vitamin D at least over 80nmol (so not far off)

Ferritin at least over 70 .....so long way to go

Are you vegetarian or vegan?

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

Thyroid disease is as much about optimising vitamins as thyroid hormones

Should think you feel terrible having started on too high a dose T3

Suggest you cut 10mcg into 5mcg doses......reduce by 5mcg and take the 15mcg as 3 x 5mcg

5mcg waking, mid afternoon and evening

Thank you. I think when I get paid I’m going to get a medicheck kit for my vitamin levels.

Can I ask, why can taking too much T3, too soon, can make you feel terrible?

It seems so wrong that the endo has started me on a dose that everyone is saying too high. I want to question it with him but I have no info to back it up?

Marz
Marz in reply to HollieBerry

T3 is the Active hormone needed in every cell of your body. Levo/T4 is a storage hormone and has to convert into T3 - for which you need optimal nutrients. So taking it slowly with T3 dosing allows your cells to wake up slowly. Compare it with having the foot hard down on the accelerator and flooding the engine ! Our adrenals are the gearbox and the thyroid the accelerator ...

Your Endo could be setting you up to fail - sigh !

HollieBerry
HollieBerry in reply to Marz

Brilliant explanation 👍🏼 thank you x

Reducing my levo made me feel really rough after three weeks I have to say. Maybe you didn’t need to drop it..

I’m on week 5 of adding T3. Week prior I reduced Levo from 150 to 125. Although Endo prescribed 2x 10 dose T3, I followed advice from other forum members and started on a lower dose of 2x 5 doses. I haven’t had a ‘wow’ moment but have noticed my eyebrows are sprouting hair in my ‘lost’ outer third, so that’s a step in right direction 😊

I’m retesting bloods next week & will post these & seek advice from lovely forum members before increasing T3 further.

HollieBerry
HollieBerry in reply to Buddy195

Thanks so much for sharing! I’m keen to hear how you get on.

So did you split your T3 with a cutter? How are you dealing with the endos? Have you told them that you’ve adjusted the dosage recommendations?

Buddy195
Buddy195 in reply to HollieBerry

No I haven’t told my Endo but will discuss with him at next appointment. In meantime, I will increase T3 slightly after having bloods checked, posting results & consulting forum members. I feel much more comfortable following advice of trusted members, who have a wealth of experience than simply following medical advice without question. If my endo asks, I will remind him that he pointed me in the direction of Thyroid UK in the first place! 😊

Lotika
Lotika in reply to Buddy195

I hope you don’t mind - I’m going to “follow” you because I am looking forward to seeing your test results and the advice, given that we are at a similar phase in the journey! I suspect I will learn something!

Buddy195
Buddy195 in reply to Lotika

No problem. It’s useful to compare notes! 👍😊

Cat013
Cat013 in reply to Buddy195

Hey Buddy195. Me too 😃. Snap.

Before adding 2x5mcg of t3 twice a day my TSH was 0.02 fT4 20 ish and fT3 4.97. Since adding the T3 and testing after 5 weeks (yes it wasn’t 6 I know but it’s how my appointment fell). My TSH is the same, ft4 lower at 14 and fT3 5.01. So my endo said to drop levo from 112.5 to 100mcg and increase to 20mcg of t3 per day from 10.

I really want to go to 25mcg but I know the advice on here is slow and steady. My endo said 15mcg but I argued for 20 on the basis of a further levo drop causing me symptoms like before. It would mean I’m not much different to now otherwise and tbh I feel a bit rubbish and don’t get even a tiny sense of woohoo that some people have. But we’ve got a long way to go 😊.

Endo said he wasn’t bothered if my t4 went lower (I am) as long as my TSH doesn’t become undetectable at 0.00. Gulp. It’s already 0.02. But I’ll cross that bridge when I come to it.

Can I please ask, have you tried one dose first thing or have you stuck to x2 doses a day? I’m really tempted for ease to take 20mcg at once first thing and see how it goes but reading replies I’m not sure it’s a good idea to increase from 10 to 20mcg and then also take it all in one go 🤷‍♀️ .

I’m so glad you can see some small changes already. That’s great ☺️

Buddy195
Buddy195 in reply to Cat013

I’m taking one dose on waking and one before bed.

Cat013
Cat013 in reply to Buddy195

Thank you. I will carry on doing so too and see what happens.

I felt so ill reducing my levo from 112.5mcgs to alternate days doing 75/100. After just three days I went back up and felt better almost instantly. Perhaps that’s too much of a big drop for you too. I don’t know enough about starter doses for T3 only that my endo said take it slow first off and gave me 2x5mcg a day. After five weeks I’m just about to start on 2x10mcg and he’s dropped my levo by 112.5mcg. x

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