Levothyroxene & Liothyronene combination, side effects?

[Hypolady]

Hi all, I'm a 150 levothyroxene intake patient but its not working for me even-though my tests were ok. So 10 days ago I shifted to 100 levo + 50 Liothyronene. My Dr. says it's a lifetime commitment. Has anyone done the same for a long time ?? are there any side effects or danger in doing so ?? TIA

[Lalatoot]

I am concerned about the amount of liothyronene you are taking. It is much stronger than levothyroxine. I believe it is 4 x stronger so by taking 50mcg you are taking the equivalent of 200mcg of levothyroxine. So from 150mcg of levo you are now taking the equivalent of 300mcg of levo.

Most of us start on 5mcg liothyronene once or twice a day and build up from there. Changes in levo should be in 25mcg amounts and changes in liothyronene in 5mcg amounts otherwise you are taking things too fast and it may make you feel unwell.

When I started adding liothyronene I cut my levo dose by 25mcg a week before to reduce the amount of levo in my system and then added a morning dose of 5mcg of lio the week later. I am now slowly building up my lio dose from there.

[greygoose in reply to Lalatoot]

Depends how much levo she converts. And, by the sound of it, that's not very much. But, some lab results would help, Hypolady.

[Lalatoot in reply to greygoose]

Thanks for clarifying Grey. Good words as always.

[greygoose in reply to Lalatoot]

You're welcome.

[cjrsquared]

That seems an awful lot of liothyronine. I was on 150 mcg Levothyroxine but now take 100 levothyroxine and 2 x10 mcg liothyronine ( one with my Levo first thing and the second dose between 13.00 and 1400). It is very individual to get the correct dose, but liothyronine is 3 to 4 times as potent as levothyroxine so 20 mcg liothyronine is equivalent to between 60-80 mcg of levothyroxine.

I am presuming you have conversion issues and bloods to support this and that your vitamins and minerals are optimal in order to support the change in medication.

I hope your doctor has explained that it takes up to 6 weeks for the reduced dose of levothyroxine to even out and that you start the liothyronine at a low dose and increase slowly over the 6 week period keeping a log of how you feel. Liothyronine has a much shorter half life so most people take it as a divided dose either 2 or 3 times a day. Once you have titrated up to your prescribed dose and at least after 6 weeks you need repeat bloods. It is normally recommended that blood draw is 24 hours after levothyroxine and 12 hours after liothyronine, otherwise you can get skewed blood levels especially of ft3 (the liothyronine )

Many people do feel better on both t3 and t4 but not everyone. Like all medication it is trying to get the correct levels for you.

[SlowDragon Administrator]

As others have said....typically we would start on 5mcg or possibly 2 x 5mcg T3 and frequently would also reduce Levothyroxine dose slightly (25mcg)

Bloods should be retested 6-8 weeks later

Starting on 50mcg is extremely high dose, and may be very difficult to reduce if (as is likely) too high

[greygoose]

My Dr. says it's a lifetime commitment.

What does he mean by that?

[Hypolady in reply to greygoose]

Means I’ll stay on it forever like the Levo. Not for a short period then convert to levo alone

[NWA6]

Hey Hypolady 👋 Yes it’s a lifetime commitment, taking medication won’t cure any of us. We don’t make the hormones we need so we have to take replacements.

Have you had side affects from taking so much Liothyronine so quickly? I’m one of the few who started 15mcg all at once from day one of prescription and then moved up to 20mcg after 6wks but most on this forum have had to start slowly, adding only 5mcg per day for a week or two and then moving up.

Personally I had no side affects, I just felt bloody marvellous from day 1 🥰

If you’re fine and no side affects all well and good but another reason why we move dosage more slowly is because it takes months to settle on a dosage that’s optimal. If you want to reconsider your dosage I’d move to 125mcg Levo and 20mcg T3. Retest in 6wks and then move the T3 up as you think best. But like I said it can take months to find that sweet spot and it’s the better way so that you don’t run into problems down the line. Hyper symtoms are no joke. I’d even go so far as to say they’re 100 times worse than Hypo 😬

[Hypolady]

Thank u all for ur advice. The 50 mcg lio was prescribed by the Dr. & so far I don’t have any side effects except for a v bad stomach, which am not actually sure it’s because of the new medication ( has anyone had such symptom with lio ??) I noticed that u all take ur lio divided on 2 or 3 doses, y is that ?? & when u take the doses other than the one u take in the early morning on empty stomach do u have t have an empty stomach too ??? Thanks 😊😊

[Kathyhandis in reply to Hypolady]

You don’t seem to have been very well advised if you don’t even understand how to take T3. I’d get a new doctor if I were you.

[HMBradley53]

50 mg is a high dose you need to start low and work your way up. Do you get blood tests every 6 weeks ? If so then you should have started with 5mg twice a day.

[Hypolady in reply to HMBradley53]

I do get tested but it hasn’t been 6 weeks since I started. But I think I will decrease the dose anyway cause I’m starting to have overdose symptoms.. thank u

[McMurtagh]

I no longer take Thyroxine but am on 90mcg of Liothyronine daily and feel well on that.

It is high dose but it works for me and I don’t have any adverse effects.

[lisabax]

I was on 200mcg of Levothyroxine and when I was prescribed liothyronine my dose of Levothyroxine came down to 75mcg and 20 of Lio. As others have pointed out, it is much stronger than levo. As for side effects, there were lots of positives, but my adrenals suffered, and I had to take supplements for that. I don't know whether that was because of the addition of T3 or in spite of it.

[Hypolady in reply to lisabax]

Wow .. from 200 to 75 😳😳 & with 20 mcg lio .. that’s sthg .. good it works for u

[Lalagal]

I was on 100 of thyroxine and 20 of liothyronene for 20 years until this year when my go took me off it due to costs. For those 20 years I had no side effects at all. The side effects started when they took me off it -weight gain, lethargy, etc, etc.

[FancyPants54 in reply to Lalagal]

So they cancelled your wellbeing for the sake of cost. How awful for you.

[Lalagal in reply to FancyPants54]

I am so angry fancypants! Going to have to take it up with my mp

[Wetsuiter in reply to Lalagal]

i think this kind of thing needs to be made more public. its bad enough when people cant get drugs they may need, but to refuse an effectve treatment after many years, is nothing short of scandalous

[Wetsuiter in reply to Lalagal]

maybe you should get everyone on here to email your mp, and anyone else we can think of.

[Lalagal in reply to Wetsuiter]

I think I might wetsuiter, that’s a good idea.

The funny thing is they are prepared to give me a prescription if I went private. It’s terrible

[FancyPants54 in reply to Lalagal]

Good luck! Stay angry. It will keep you focussed.

[Hypolady in reply to Lalagal]

So sorry for what they did to u

[Jfy3]

Hi. I was on 175mcg thyroxine around 2 years ago. Working with an Endo and regular blood tests to support I am now on 100mcg Levothyroxine and 30/20 liothyronine on a 3/4 day split, (Monday, Wednesday, Friday 30 mcg and Tuesday, Thursday, Saturday & Sunday 20 mcg) splitting the T3 into two doses per day. It has taken a lot of effort to get to this optimum dosage with an acceptable TSH - it was almost dipping into negative when I took T3 30mcg daily and was too low even taking on alternate days. It really does need to be individually fine tuned. Please check your bloods at 4-6 monthly intervals and balance TSH, T3 & T4 as well as how you feel. I am now feel in the best I have for over 20 years and still getting bloods checked. Good Luck with your journey - it is indeed a lifetime commitment.

[SlowDragon Administrator in reply to Jfy3]

T3 doesn't work like that. It's essential to take exactly the same dose everyday

[Jfy3 in reply to SlowDragon]

Hi SlowDragon. Thank you for your reply. I am under the care of a private Endocrinologist here in the uk for hashimotos. He visits the USA several times a year to ensure he is top of his game so I feel very confident in his ability. Taking T3 30mcg was way too much for me, 20mcg too little. We tried alternate day split but this was still too much. The 4/3 day split will be discussed when I next have my bloods (they are checked every 4-5 months followed up by a consultation). I would be interested to know why you feel this is not an appropriate regime so I can do some research and discuss this with him later in the year.

[SlowDragon Administrator in reply to Jfy3]

It's fine to take different doses of Levothyroxine on alternate days. Levothyroxine is a storage hormone and is converted as and when needed

But Liothyronine dose is directly available and controls metabolism and we should always take exactly same dose everyday. Often many of us need 2 or 3 small split doses per day

You may risk upsetting adrenals by taking different doses

I don't think you will find anyone on here who takes different dose of T3 on different days

If your FT3 level was too high, you can find tune Levothyroxine dose to adjust FT3 result

Or different brands of T3 can give different result on exactly same dose. (Different brands of Levothyroxine and Liothyronine are not bio-equivalent)

I found Morningside Healthcare 20mcg gives higher FT3 levels than 20mcg Mercury Pharma. But different brands affect people in different ways

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 .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

If/when also on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Is this how you do your tests?

Obviously vitamin D, folate, ferritin and B12 levels need to be optimal too

[zoiesmith]

Hi - sorry to be off topic - but do all of you taking liothyronine have prescriptions from your UK docs and are you getting the liothyronine filled at pharmacies here in the UK? Two doctors in London have told me that liothyronine is not available in the UK. Thanks

[bantam12 in reply to zoiesmith]

Well those docs are talking twaddle, my husband has an NHS prescription and gets his T3 from our local Boots.

[zoiesmith in reply to bantam12]

oh wow - I'm so confused. Time to find a new doc...

[tj61 in reply to zoiesmith]

Yes, lots of us on T3 on NHS but, due to cost, it can be a fight to get it.

[1piglet in reply to bantam12]

I have heard that it is very expensive in UK Chemists - can you confirm this please, or otherwise, thank you.

[bantam12 in reply to 1piglet]

It's free with an NHS prescription.

[1piglet in reply to bantam12]

Thank you

[SlowDragon Administrator in reply to 1piglet]

Liothyronine is not expensive to make. But NHS being charged very high price ......resulted in thousands of patients having their NHS prescription stopped. Thousands more denied treatment

Recent media coverage

thyroidtrust.org/media-cove...

medscape.com/viewarticle/90...

mjauk.org/wp-content/upload...

[1piglet in reply to SlowDragon]

Thank you for the information, SlowDragon. I still don't understand why the NHS don't just change their supplier, it is obviously a lot more complicated than that, but why are they so locked in to this ridiculous charge.

[SlowDragon Administrator in reply to 1piglet]

Until recently there was no legal framework for NHS to even ask what price they were paying, on any generic medication, let alone control it.

The assumption was that, with generic medications that competition between brands would keep/drive price down

But some generic medications only had a single license and no competitors ....

gov.uk/cma-cases/pharmaceut...

Last big case CMA overturned on appeal

pharmatimes.com/news/pfizer...

Medical supplies bill passed in 2017.

gov.uk/government/publicati...

New licenses granted in 2018. New suppliers came in at similar prices. Very slow reduction in price .....highest was £258 for 28 tablets.....now down to £173 for 28 tablets

Still a long way to get reduced to anywhere near price of Liothyronine in rest of world ....

[SlowDragon Administrator in reply to 1piglet]

Recent debates/questions in parliament

theyworkforyou.com/search/?...

Scottish parliament

healthunlocked.com/thyroidu....

[1piglet in reply to SlowDragon]

Thank you for all the interesting reading - looking at the figures involved for the drug companies, you can understand why they want to keep us on so many drugs! It is good to see that there are a lot of good people out there fighting our cause.

[SlowDragon Administrator in reply to zoiesmith]

You can see prescription rate for Liothyronine by CCG area here

Post code lottery

openprescribing.net/analyse...

First step is to get FULL Thyroid and vitamin testing

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

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 .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Come back with new post once you get results and members can advise on next steps

Levothyroxine dose should be fine tuned and all four vitamins optimal before considering adding any T3

[PamDerouen]

L-Tyrosine, O-(4-hydroxy-3-iodophenyl)-3,5-diiodo-, monosodium salt

Twenty-five mcg of liothyronine is equivalent to approximately 1 grain of desiccated thyroid or thyroglobulin and 0.1 mg of L-thyroxine.

Each round, white to off-white Cytomel (liothyronine sodium) tablet contains liothyronine sodium equivalent to liothyronine as follows: 5 mcg debossed KPI and 115; 25 mcg scored and debossed KPI and 116; 50 mcg scored and debossed KPI and 117. Inactive ingredients consist of calcium sulfate, gelatin, corn starch, stearic acid, sucrose and talc.

[Hypolady in reply to PamDerouen]

Then how much does 25 mcg cytomel equals in terms of liothyronine ??? I’m on cytomel & didn’t know there was pure liothyronine available: may be that’s y ppl here thought 25-50 mcg was too much cause they didn’t know it was cytomel

[SlowDragon Administrator]

Vast majority of patients are prescribed 20mcg tablets. Easy to cut into 1/4's with sharp craft scalpel

NHS only has 20mcg tablets licensed on NHS drugs tariff. Currently NHS charged £173 per 28 tablets

It's possible (but rare and expensive) to be prescribed 5mcg tablets on NHS as "special prescription".

Or 5mcg available on private prescription too. Sigma Pharma 5mcg £126 x 90 tablets

[abbasifar]

Nothing can guarantee for 100either 150 as after 1or 2 years could be reduced same as me.it depends to the time when it getting stable for you.

Don't worry at all, if you can do yoga and meditation to kill your stress.

Your enemy is your stress. we are all same.

It is not dangerous but has sides effect.

I missed my eyebrows but after 2 years start coming back very slowly.

But side effects are different .

Also my be nothing for you.

GP's are not specialist they haven't enough knowledge in this matter and the just follow deception and from other hands ,to avoiding any extra costs for NHS specialist wold not see people.