Just starting out on liothyronine…: Hello, just... - Thyroid UK

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Just starting out on liothyronine…

AJS14600 profile image

Hello, just has a quick question here for anyone who is currently taking liothyronine for their hashimotos or hypothyroidism. I was diagnosed with hashimotos about 11 years ago but my doctor has just added liothyronine along with my levothyroxine because I tested positive for the DIO2 gene. So I was just wondering if anyone had any good experiences with this medication. I’ve only been on it a few days but I’m hoping it can give me some more energy and help me to lose some weight.

16 Replies
SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

Yes many hundreds/thousands of members take T3

As you have Hashimoto’s have you had coeliac blood test done and are you on strictly gluten free diet

What were your most recent thyroid and vitamin results and ranges BEFORE starting T3

What vitamin supplements are you currently taking

Important to regularly retest vitamin D, folate, ferritin and B12

On levothyroxine and/or T3 we need optimal vitamin levels

How much levothyroxine were you taking BEFORE starting T3

Do you always get same brand levothyroxine at each prescription

Has endocrinologist reduced levothyroxine, if yes, by how much

How much T3 has endocrinologist initially prescribed

AJS14600 profile image
AJS14600 in reply to SlowDragon

Hello SlowDragon, thank you for your reply.

I have tested negative for coeliac in the past but I don’t think I have tested for it in a few years. Is it something you need to test often for. Since I tested negative in the past for it, I still have gluten in my diet. Is that ok when you have thyroiditis?

I do not have my last thyroid results. I usually get my blood taken and the results are then sent to my doctor, not to me. He the. advises me on how much levothyroxine to take. I can’t remember if I’ve had vitamin levels checked in a while but I can ask. I usually take a daily multivitamin.

I was taking 175mg of levothyroxine but it’s been reduced to 100mg per day along with the T3 which I’m taking 10mg twice daily.

I usually take the 100mg of levothyroxine and the 10mg of T3 when I wake up in the morning and then eat anywhere from 30-60 minutes after that. Then I take my second dose of T3 in the late afternoon.

Wow! Your Endo has reduced your Levo by 75mcg a day in one go!? That's crazy. That's way too much. And he's given you a piddling 20mcg a day T3. That's not going to make up for the loss of all that Levo unless you were converting none of it.

How do you feel? I dropped my Levo by 25mcg and then another 25mcg a few weeks later for a total of 50mcg dose decrease but I'm working my way up T3, just moved up to 50mcg a day and still feeling like a sloth.

How long before you see your doctor again?

greygoose SlowDragon Am I right to worry about what this poster's doctor has done to her Levo dose and the small amount of T3? Any advise for her?

Hello FancyPants54,

I feel exhausted a lot of the time and the need for a lot of naps and caffeine to keep me going which is difficult to do when you have two small children.

I’ve only been taking the T3 for a few days but haven’t noticed anything yet. I’m hoping my energy levels will increase with time.

I got a letter yesterday and my next appointment with my endocrinologist is in September….

I think he's reduced your Levo too far, too fast. Do you have spare on hand? Could you go back to something like 150 a day? SlowDragon has asked for results pre-T3, but unless you were very over range for FT4 then I think you have been told to reduce too much.

SlowDragon profile image
SlowDragonAdministrator in reply to AJS14600

What were your results BEFORE starting T3

Do you always get test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Depends where Ft4 is within range, how much levothyroxine needs to be reduced

What were most recent vitamin D, folate, ferritin and B12

On levothyroxine, and especially on levothyroxine plus T3 we need optimal vitamin levels

Low vitamin levels are extremely common when hypothyroid/poor conversion of Ft4 to Ft3

Many many autoimmune thyroid patients are gluten intolerant not coeliac

Suggest you get FULL Thyroid and vitamin testing done now

Then retest in 6-8 weeks

AJS14600 profile image
AJS14600 in reply to SlowDragon

SlowDragon

I don’t know my last blood test results as they are usually just sent to my endocrinologist and then he adjusts my levothyroxine as needed. All I know is that my levels are always in the normal range but I don’t see any difference in symptoms and that’s why I had the DIO2 test done and found out I needed T3.

Thank you for all the information. 8’ll be busy tonight reading it all! I feel embarrassed to say that I haven’t done much research into this condition I have as I thought it was a lot more simple and straightforward.

SlowDragon profile image
SlowDragonAdministrator in reply to AJS14600

You are legally entitled to copies of blood test results and ranges

Is this NHS or private endocrinologist

Email endocrinologist secretary are request copies of all your test results

The only person who can manage this disease is you

Keep really good records of how you feel on any dose levothyroxine/T3 alongside each test results

Which brand of levothyroxine are you currently taking

Many, many people find different brands are not interchangeable

Best to always get same brand levothyroxine at each prescription

And definitely always get same brand T3 at each prescription

It’s trial and error what dose T3 and how you take it….some prefer single dose, others dosing twice day approx 12 hours apart, many (including myself) find it essential to take 3 doses per day at approx 8 hour intervals

SlowDragon profile image
SlowDragonAdministrator in reply to AJS14600

approx 5% with Hashimoto's are coeliac, but a further 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal

As your result is negative can consider trialing strictly gluten free diet for 3-6 months. Likely to see benefits. Can take many months for brain fog to lift.

If no obvious improvement, reintroduce gluten see if symptoms get worse.

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Well done on getting lio :) I'm one of many on here who have found it transformative, and once both free T4 and free T3 were at good levels, managed to lose the hypo weight.

Have you gone straight in on a 20 mcg tablet? or been given a lower dose? It's quite strong medication so lots of people find it best to introduce s-l-o-w-l-y so (if on 20 mcg tablets) start with 1/4 tablet, taken with your levo; then after a week or so add another 1/4 tablet, well spaced from the first; then after another week or so add a third 1/4 tablet, either with one of the other doses or as a third dose, and a week or so later still move up to a whole tablet - and then experiment to see whether you are best taking it in 1, 2 or 3 doses [different people have strong preferences for each].

It's also REALLY important to test key nutrients - ferritin, folate, vit D and B12, as many of us hypos need to supplement, and you're unlikely to get properly well unless these are good - an your thyroid meds are more effective if they are

Good luck x

Hi fuchsia-pink,

I’m taking 10mg twice daily. I take the first dose with my 100mg of levothyroxine as soon as I wake up in the morning and then I take the second dose in the afternoon sometime.

How long does it usually take for the medication to start working? I’ve only been taking it for a few days so I haven’t noticed too much of a difference except that I’ve had some irritability but I don’t know if that would be related to starting the new T3 medication.

I haven’t had my vitamin levels checked in a while so I will mention that to my endocrinologist. I didn’t really realise that vitamins had a connection to the thyroid. I take a daily multivitamin but that’s about it.

I just have very little energy, very dry skin and nails and I’m just constantly exhausted- which is difficult with two young kids.

SlowDragon profile image
SlowDragonAdministrator in reply to AJS14600

Multivitamins are never recommended on here…too little of what we do need

Most contain iodine not recommended for anyone with Hashimoto’s

Stop any supplements that contain biotin a week before all blood tests as biotin can falsely affect test results

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. Both are autoimmune and generally called Hashimoto’s.

In U.K. medics never call it Hashimoto’s, just autoimmune thyroid disease (and they usually ignore the autoimmune aspect)

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

On T3 or NDT - day before test split daily dose into 3 smaller doses, spread through the day at approx 8 hour intervals, taking last dose 8-12 hours before test

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

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Did you notice that her doctor reduced her Levo by 75mcg a day in one go and gave her just 20mcg T3 to take? I have alarm bells ringing about that.

Gosh - agree that seems MUCH too big a reduction ...

AJS - there are often probs with dropping too much in one go - as much as increasing too much in one go ... basically, we do better with tiny tweaks and long gaps between changing dose = long gaps as it takes time for our bodies to react to changing hormone levels; and little tweaks as we are all different and you want to find your own personal "sweet spot" rather than go sailing past it ...

Can you get hold of your last few blood test results - you are legally entitled to these without giving a reason, although it's usually easiest to say "for my records" or register for on-line access. For such a HUGE drop in levo I'd expect your last free T4 result to have been waaaay over-range - but if you have high antibodies, a high result could be temporary, ie if you are having a "Hashi's flare" which mimics hpERthyroidism and sees you thyroid hormone levels jump very high, but not stay there for long - so you really wouldn't want a big drop permanent in meds.

You shouldn't be taking a multivitamin anyway for all sorts of reasons.

* If your multi contains iron, it will block the absorption of all the vitamins - you won't absorb a single one! Iron should be taken at least two hours away from any other supplement except vit C, which is necessary to aid absorption of iron, and protect the stomach.

* If your multi also contains calcium, the iron and calcium will bind together and you won't be able to absorb either of them.

* Multi's often contain things you shouldn't take or don't need : calcium, iodine, etc. These things should be tested before supplementing.

* Copper and zinc need to be kept balanced, but hypos are often high in one and low in the other - often low in zinc. So, both should be tested before supplementing. Taking either of them when you already high in it, will reduce the other and make you feel worse.

* Multi's often contain the cheapest, least absorbable form of the supplement : magnesium oxide, instead of magnesium citrate or one of the other good forms; cyanocobalamin instead of methylcobalamin; folic acid instead of methylfolate; etc. etc. etc. This is especially true of supermarket multis.

* Multi's do not contain enough of anything to help a true deficiency, even if you could absorb them.

* When taking several supplements, you should start them individually at two weekly intervals, not all at once as you would with a multi. Because, if you start them all at once, and something doesn't agree with you, you won't know which one it is and you'll be back to square one.

* Most supplements should be taken at least two hours away from thyroid hormone, but some - iron, vit D, magnesium and calcium (should you really need to take it) should be taken at least four hours away from thyroid hormone.

*Vit C should be taken 2 hours away from B12 because it affects how the body uses B12.

*Never take magnesium/zinc/calcium at the same time as they affect the absorption of each other.

*Take zinc and copper separately as zinc affects the absorption of copper, if you need to take both.

*Vits A/D/E/K are all fat soluble vitamins, and if taken together can compete for the source of fat. They are best taken away from each other.

* The magnesium you take - and just about everybody needs to take it - should be chosen according to what you want it to do:

Magnesium citrate: mild laxative, best for constipation.

Magnesium taurate: best for cardiovascular health.

Magnesium malate: best for fatigue – helps make ATP energy.

Magnesium glycinate: most bioavailable and absorbable form, non-laxative.

Magnesium chloride: for detoxing the cells and tissues, aids kidney function and can boost a sluggish metabolism.

Magnesium carbonate: good for people suffering with indigestion and acid reflux as it contains antacid properties.

Worst forms of magnesium: oxide, sulphate, glutamate and aspartate.

With a multivitamin, you are just throwing your money down the drain, at best, and doing actual harm at worst. Far better to get tested for vit D, vit B12, folate and ferritin, and build up your supplementation program based on the results. A vitamin or a mineral is only going to help you if you need it, anyway. More of something you don’t need is not better, it's either pointless or even dangerous, as with iodine, calcium, iron or vit D. :)

You might find you absorb your thyroid hormone better if you always left a complete hour - at least - before eating or drinking anything other than water. Half an hour isn't really long enough.

Hi,

I have autoimmune thyroiditis (Hashimoto's). I take 75mcg of T4 (levo) and (10mcg) of T3. I have had various doses in the past, the highest I ever had was 200mcg of T4 and 120mcg of T3 at the same time. What I've found is that dosing your medication to keep the body's production of deiodinase 3 enzyme (D3) under control is one of the big keys to feeling okay. D3 is the enzyme that converts thyroid hormones into their inactive forms (useless to us rT3 and T2).

When I was on the higher dose of thyroid medication I had very high D3 and converted the medication to the inactive forms at an incredibly high rate. My TSH was undetectable but I had no symptoms of hyper and would keep developing symptoms of hypo. My D3 worked so fast that I was constantly upping my medication because after a few weeks of feeling fine it would basically stop working. I would feel great and then I would start having hypo symptoms and would start taking more medication. I spoke to some amazing people on this forum and figured out how to fix it, it'll probably help you too.

I learnt that how we take the medication has a flow-through effects on our TSH which then dictates our thyroid hormone conversion process.

When you take the medication in one go and it enters your blood stream it will flow past your pituitary and the thyroid hormone receptors will read it at the high level of your entire tablet and assume that this current highest level is what it needs to convert against with D3. Basically, the pituitary thinks that the 100mcg tablet you just absorbed is what it needs to deal with at all times and if it feels this is too high for your body it will up how much D3 it's churning out and it will convert that thyroid medication into useless rT3 and T2 faster than you can use it all. In other words, you'll feel hypo despite having thyroid medication. My doctor knew bugger all about the thyroid hormone conversion process. The same thing will happen with the T3, it'll convert it to useless T2 before you can use it all up as the needed T3.

If your D3 is high enough you won't notice taking the T3 unless you're taking a very high dose and that is likely to keep lowering your TSH and increasing your body's output of D3 until you can manage to outpace that D3 with medication. Not many doctors will let you take 120mcg of T3 per day. The more manageable thing is to spread out the medication to avoid a large amount of either T4 or T3 hitting your blood stream in one go and freaking out your pituitary that will then set of a chain reaction of increasing the D3 production.

I have tried many, many, many dosages and this is what I found.

1. Take your medication sublingually, then you don't need to stress about whether you've eaten recently.

2. Split the medication. Do not take 100mcg in one go, a healthy thyroid would never dump 100mcg of levo in one go and your pituitary will try to work against it by producing more D3 if it can manage it (hyper people don't produce enough D3 for various reasons).

3. Don't take the T4 and T3 together, it'll dump all those hormones into your blood stream and piss off the pituitary which will try to out do your medication with D3. Some people have no problem, but as you're feeling irritable and not feeling any effect from the T3 then your D3 is likely too high and taking them together will make it worse.

That's basically it. It's fine for you to drop your levo that fast, you won't need as much from the day you started taking T3 because the T3 is used immediately and 10mcg is fine twice a day make up for that missing levo.

The T3 is very strong. 10mcg in one go will lower my TSH and raise my D3. Try to take it as 5mcg even if you have to do it four times a day, and do it sublingually. Let it dissolve under your tongue and don't drink anything for about 5-10 minutes afterwards to make sure it all absorbed.

For the record, I take 75mcg of T4 per day, half of it when I turn off my light to sleep, and half immediately after waking. I take 5mcg of T3 about an hour later, and then another 5mcg of T3 about 9pm. If I take even 50mcg of T4 in one go my D3 starts to raise and I have to take more T3 to cope.

Also, stress will increase your need for T4 and T3, so there are times during high stress moments (think exam block/work deadline) when I will take an extra half tablet of T4 during the day or an extra 5mcg of T3.

Try spreading your dose out for a few weeks. It takes about 2 weeks for the D3 to lower.

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