Finally prescribed liothyronine (T3) via NHS - Thyroid UK

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Finally prescribed liothyronine (T3) via NHS

KCFryer profile image
30 Replies

After struggling and fighting GPs and hospital since 2021, I was finally prescribed liothyronine (T3). I was told to start taking 5mcg twice a day and the brand will be Morningside. Was not told wether I should reduce levothyroxine now. It's usually reduced in 25mcg, isn't it? Has anyone got any advice and have experience with this particular brand please? Thank you! Ps: I'm not lactose intolerant and cannot have mannitol.

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Jaydee1507 profile image
Jaydee1507Administrator

Can you tell us your latest blood results with ranges and then people can help further.

Morningside contains lactose but no mannitol so it should be fine for you.

What dose of Levo are you on now?

Are your vitamin levels at optimal?

KCFryer profile image
KCFryer in reply to Jaydee1507

Thank you. I'll post results soon, they're all very good apart from vitamin D which I've been supplementing for 8 weeks now. The reason I was given the trial on T3 was that I have no underlying conditions and kept feeling very symptomatic despite biochemically euthyroid. Just really need people's thoughts on how to take liothyronine and brand advice. I'm currently taking 137mcg (Synthroid) which I source as it used to be my brand in Brazil and brands I tried here in the UK, caused me lots of side effects. Synthroid minimise them but do not exclude them totally.

KCFryer profile image
KCFryer in reply to Jaydee1507

Last results are:

Serum TSH level 0.28 mu/L [0.27 - 4.2]

Serum free T4 level 20.6 pmol/L [12.0 - 22.0]

Serum free triiodothyronine level 5.2 pmol/L [3.1 - 6.8]

Blood haematinic levels

Serum vitamin B12 level 544 ng/L [197.0 - 771.0]

Serum folate level 4.2 ug/L [3.0 - 20.0]

Serum ferritin level 48 ug/L [13.0 - 150.0]

Serum total 25-hydroxy vitamin D level 58.7 nmol/L; NB:Reference comments altered to advise treatment.

<25 nmol/L : Vit D deficiency,requiring replacement

25-50 nmol/L : Vit D insufficiency,consider replacement

50-150 nmol/L : Adequate Vitamin D status.

Full blood count

Haemoglobin concentration 122 g/L [120.0 - 150.0]

Total white blood count 5.5 10*9/L [4.0 - 10.0]

Platelet count - observation 261 10*9/L [150.0 - 400.0]

Haematocrit 39 % [36.0 - 46.0]

Red blood cell count 4.14 10*12/L [3.8 - 4.8]

Mean cell volume 93 fL [83.0 - 101.0]

Mean cell haemoglobin level 30.0 pg [27.0 - 32.0]

Neutrophil count 2.36 10*9/L [1.8 - 7.4]

Lymphocyte count 2.17 10*9/L [1.1 - 3.5]

Monocyte count - observation 0.44 10*9/L [0.21 - 0.92]

Eosinophil count - observation 0.43 10*9/L [0.02 - 0.67]

Basophil count 0.06 10*9/L [0.0 - 0.13]

Nucleated red blood cell count 0.00 10*9/L; If advice is required regarding the interpretation of

abnormal full blood count results please see pathfinder

(haematology/documents) or the haematology NGH intranet

page.

Chemistry Tests

Serum sodium level 143 mmol/L [133.0 - 146.0]

Serum potassium level 4.2 mmol/L [3.5 - 5.3]

Serum creatinine level 68 umol/L [45.0 - 84.0]

eGFR using creatinine (CKD-EPI) per 1.73 square metres > 90 mL/min

Serum total protein level 71 g/L [60.0 - 80.0]

Serum calcium level 2.30 mmol/L [2.25 - 2.55]

Serum albumin level 43 g/L [35.0 - 50.0]

Serum adjusted calcium concentration 2.28 mmol/L [2.2 - 2.6]

Serum alkaline phosphatase level 46 iu/L [30.0 - 130.0]

Serum bilirubin level 4 umol/L [< 21.0]

Serum alanine aminotransferase level 15 iu/L [5.0 - 33.0]

Plasma glucose level 5.3 mmol/L

Acute kidney injury warning stage Not applicable; AKI Stage NA

Haemoglobin A1c level - IFCC standardised 36 mmol/mol; Providing none of the exclusion criteria are met, HbA1c of 48mmol/mol or greater can be diagnostic of diabetes.

Values <48 mmol/mol do not exclude diabetes.

Misleading results may be obtained in any situation where red blood cell lifespan is affected, this includes anaemia and certain medications. Please refer to the Diabetes UK website below for more information. diabetes.org.uk/Professiona...reports/Diagnosis-ongoing-management-monitoring/New_diagnostic_criteria_for_diabetes/

Regenallotment profile image
Regenallotment

hi there, very well done on getting a prescription for T3, I’ve dug out the product info from helvella ’s magic document. Looks like Morningside contains lactose. The t3s that don’t are Accord, Roma and Teva according to his doc 🌱

Helvellas documents
KCFryer profile image
KCFryer in reply to Regenallotment

Thank you! I'm not lactose intolerant, so it should be fine.

Regenallotment profile image
Regenallotment in reply to KCFryer

ooops I misread and missed the ‘not’ 🙈apologies 🌱

KCFryer profile image
KCFryer in reply to Regenallotment

You don't have to apologise and thank you for trying to help me xx

SlowDragon profile image
SlowDragonAdministrator

wether you need to reduce levothyroxine depends on where Ft4 and Ft3 were in most recent tests

Please add most recent TSH, Ft4 and Ft3 results and ranges

Was test done early morning, fasting apart from water, last dose levothyroxine 24 hours before test

Which brand levothyroxine are you currently taking

Also please add Vitamin D, folate, ferritin and B12 results and ranges

KCFryer profile image
KCFryer in reply to SlowDragon

Hi! My TSH, free T4 and free T3 are optimal close to top range, so no clue on how to manage my dose from now on. I'm basically having T3 to try helping a possible DIO2 polyphormism once I'm biochemically euthyroid but still symptomatic.

Last results are:

Serum TSH level 0.28 mu/L [0.27 - 4.2]

Serum free T4 level 20.6 pmol/L [12.0 - 22.0]

Serum free triiodothyronine level 5.2 pmol/L [3.1 - 6.8]

Blood haematinic levels

Serum vitamin B12 level 544 ng/L [197.0 - 771.0]

Serum folate level 4.2 ug/L [3.0 - 20.0]

Serum ferritin level 48 ug/L [13.0 - 150.0]

Serum total 25-hydroxy vitamin D level 58.7 nmol/L; NB:Reference comments altered to advise treatment.

<25 nmol/L : Vit D deficiency,requiring replacement

25-50 nmol/L : Vit D insufficiency,consider replacement

50-150 nmol/L : Adequate Vitamin D status.

Full blood count

Haemoglobin concentration 122 g/L [120.0 - 150.0]

Total white blood count 5.5 10*9/L [4.0 - 10.0]

Platelet count - observation 261 10*9/L [150.0 - 400.0]

Haematocrit 39 % [36.0 - 46.0]

Red blood cell count 4.14 10*12/L [3.8 - 4.8]

Mean cell volume 93 fL [83.0 - 101.0]

Mean cell haemoglobin level 30.0 pg [27.0 - 32.0]

Neutrophil count 2.36 10*9/L [1.8 - 7.4]

Lymphocyte count 2.17 10*9/L [1.1 - 3.5]

Monocyte count - observation 0.44 10*9/L [0.21 - 0.92]

Eosinophil count - observation 0.43 10*9/L [0.02 - 0.67]

Basophil count 0.06 10*9/L [0.0 - 0.13]

Nucleated red blood cell count 0.00 10*9/L; If advice is required regarding the interpretation of

abnormal full blood count results please see pathfinder

(haematology/documents) or the haematology NGH intranet

page.

Chemistry Tests

Serum sodium level 143 mmol/L [133.0 - 146.0]

Serum potassium level 4.2 mmol/L [3.5 - 5.3]

Serum creatinine level 68 umol/L [45.0 - 84.0]

eGFR using creatinine (CKD-EPI) per 1.73 square metres > 90 mL/min

Serum total protein level 71 g/L [60.0 - 80.0]

Serum calcium level 2.30 mmol/L [2.25 - 2.55]

Serum albumin level 43 g/L [35.0 - 50.0]

Serum adjusted calcium concentration 2.28 mmol/L [2.2 - 2.6]

Serum alkaline phosphatase level 46 iu/L [30.0 - 130.0]

Serum bilirubin level 4 umol/L [< 21.0]

Serum alanine aminotransferase level 15 iu/L [5.0 - 33.0]

Plasma glucose level 5.3 mmol/L

Acute kidney injury warning stage Not applicable; AKI Stage NA

Haemoglobin A1c level - IFCC standardised 36 mmol/mol; Providing none of the exclusion criteria are met, HbA1c

of 48mmol/mol or greater can be diagnostic of diabetes.

Values <48 mmol/mol do not exclude diabetes.

Misleading results may be obtained in any situation

where red blood cell lifespan is affected, this

includes anaemia and certain medications. Please refer

to the Diabetes UK website below for more information.

diabetes.org.uk/Professiona...

reports/Diagnosis-ongoing-management-monitoring/New_

diagnostic_criteria_for_diabetes/

KCFryer profile image
KCFryer in reply to SlowDragon

Sorry blood test was done at 8:30 on an empty stomach and last dose of levothyroxine was taken 24hrs before.

SlowDragon profile image
SlowDragonAdministrator in reply to KCFryer

Serum vitamin B12 level 544 ng/L [197.0 - 771.0]

Serum folate level 4.2 ug/L [3.0 - 20.0]

Serum ferritin level 48 ug/L [13.0 - 150.0]

Serum total 25-hydroxy vitamin D level 58.7 nmol/L;

Your Vitamin levels are long way from optimal

What vitamin supplements are you currently taking

Aiming for vitamin D at least over 80nmol

Folate at least over 16-18

Ferritin at least over 70

As you have Hashimoto’s are you on strictly gluten free /dairy free diet

KCFryer profile image
KCFryer in reply to SlowDragon

It's been 8 weeks since started taking vitamin D 1000 ui plus K2. So vitamin D might be better now. I was scared to start other supplements as endocrinologist didn't agree I needed any. Now that I'm about to start the trial, I don't think it's a good idea to start anything new with it otherwise I won't know where possible side effect are coming from. I really need advice on my initial question as I'm about to start the trial with very little knowledge on T3 and haven't got letter back from endocrinologist since last appointment 3 weeks ago. Thank you!

FancyPants54 profile image
FancyPants54 in reply to KCFryer

You do need to start working on ferritin, that's way too low. You can do this with food. Be sure to eat blood rich foods. Liver, liver pate, black pudding, spinach. You can be doing that in the background safely enough.

It is normal for the T3 level to be reduced when introducing T3. Most endos drop the dose too far. Taking out 25mcg is probably sensible. Reduce for 3 or 4 days, or a week if you can, before starting the T3. Start with 5mcg per day, not the full 10. If the tablet will cut with a tablet cutter, divide it into quarters and take 1 quarter with your morning Levo and then the other quarter in the afternoon sometime. It's trial and error what time suits you best. Before you feel like you ran out of energy. You could try 3-4pm and see what that feels like.

After 2 weeks, provided you are not feeling odd from the addition of the T3, add in another quarter of the tablet so that you are taking 5mcg in the morning and 2.5mcg in the afternoon. Then one or two weeks later, depending on how you feel, add in the remaining quarter tablet.

You need to go slow because the half-life of Levo is quite long and so that will be reducing in your system as the T3 gets going.

SlowDragon profile image
SlowDragonAdministrator in reply to FancyPants54

It is normal for the T4 level to be reduced when introducing T3

You meant T4

SlowDragon profile image
SlowDragonAdministrator in reply to KCFryer

So yes ….only make one change at a time

How much levothyroxine are you taking

Do you always get same brand levothyroxine at each prescription

Initially I would reduce levothyroxine by 12.5mcg

Wait 4-5 days before starting on just 2.5mcg T3 waking and another 2.5mcg mid-late afternoon

Assuming that’s ok….after about week reduce levothyroxine by another 12.5mcg …….wait 4-5 days and then increase morning dose T3 to 5mcg …..if ok after day or so increase pm dose to 5mcg

Hold at this for 6-8 weeks then retest, move 2nd dose to around 9pm night before test

Meanwhile working on increasing iron rich foods

Also suggest you test vitamin D

Quite likely 1000iu is high enough dose to be increasing vitamin D levels

Test twice yearly via NHS private testing service when supplementing

vitamindtest.org.uk

Are you taking any vitamin K2 or magnesium yet

KCFryer profile image
KCFryer in reply to SlowDragon

Thank you SlowDragon! Glad to know my T4 will decrease when starting T3. I've always noticed I feel better when free T4 is not so high. I'm currently taking vitamin D 1000iu with K2 in spray, nothing else. Regarding levothyroxine, I'm currently taking 137mcg (Synthroid) which I source as it used to be my brand in Brazil for many years and brands I tried here in the UK, caused me lots of terrible side effects, specially when compounding with different brands at the same time. I thought I was going to die. Synthroid has minimised them but do not exclude them totally, which makes me think T3 is a good idea. Glad one of the endocrinologists I saw, listened to me. I had to literally beg him.

SlowDragon profile image
SlowDragonAdministrator in reply to KCFryer

I'm currently taking 137mcg (Synthroid)

So initially reduce to 125mcg ….wait 4-5 days before adding 2.5mcg T3 twice day

After a week or so reduce levothyroxine further to 112.5mcg ….and increase T3 to 5mcg twice day

Retest 6-8 weeks time

radd profile image
radd

KCFryer,

Endos should not prescribe T3 without any support regrading administering it, as they are setting you up to fail. FancyPants54 has given sound advice re introducing T3 and reducing your Levo. Many members experience an inner heat and headache after starting T3 which passes after a few days but might reappear again after each dose raise.

FT4 20.6 pmol/L [12.0 - 22.0] - 86% through range

FT3 5.2 pmol/L [3.1 - 6.8] - 56.76% through range

I think your labs are great, especially considering you are low in ferritin, folate and Vit D, as adequate levels of these are essential for good thyroid hormone conversion/utilisation.

Serum blood levels only show what we carry and not what is being used on a cellular level. Members are enquiring about your nutrient/iron level status because optimising these should improve conversion, further elevate T3 levels and help your meds work more effectively.

Thyroid meds can be fussy and taking extra won’t alleviate symptoms if the root causes for it not working in the first place aren’t addressed. It may even create additional issues that are difficult to reverse even when meds are stopped. Personally, before introducing extra T3 I would be spending 6-12 months optimising nutrients, adding selenium and a mitochondrial support, and considering all other causes of hormone dysfunction of which there is plenty.

SlowDragon profile image
SlowDragonAdministrator in reply to radd

Personally, before introducing extra T3 I would be spending 6-12 months optimising nutrients

I would agree

I certainly found that was only way I could tolerate adding T3, getting all four vitamins optimal and I went gluten free year before starting T3

KCFryer profile image
KCFryer in reply to SlowDragon

Thank you! I’d try that, but I cannot lose the opportunity to do the trial via NHS now. But I’ll do my best to follow your advice. I once tried to go gluten free, but after a couple of weeks I became even more lethargic. Luckily I’m not celiac and not lactose intolerant. But I know it would really help with inflammation.

KCFryer profile image
KCFryer in reply to radd

That’s exactly what I think, despite being biochemically euthyroid I might not be using the T3 appropriately intracelular due to a DIO2 polyphormism. I’ve always carried lots of symptoms along with my 30 years being hyphothyroid. Regarding other causes and addressing them, I’ve tried everything. Have had extensive investigations since 2019. Have had complete investigation in Brazil while on holiday. All other causes were ruled out. My vitamins are not ideal but the fact my thyroid panel is excellent proves that the root of the problem is deeper. I’ll try my best to raise them though.

SlowDragon profile image
SlowDragonAdministrator in reply to KCFryer

My vitamins are not ideal but the fact my thyroid panel is excellent proves that the root of the problem is deeper.

Suggests poor gut function

Many, many thyroid patients, especially with Hashimoto’s need to supplement vitamin D, magnesium and vitamin B complex continuously to maintain optimal levels

Often initially B12 too

Iron/ferritin very common ongoing issue for many

frequently gluten free/dairy free may help despite no obvious symptoms

KCFryer profile image
KCFryer in reply to radd

Thank you! I’d try to optimise my nutrients before starting the trial, but I cannot lose the opportunity to do the trial via NHS now. But I’ll do my best to follow your advice. I've started taking T3 today, as I heard from other people I should take it very slowly, I've decided to have 5mcg split in 2 doses rather than 5mcg twice a day. During a couple of weeks I'll try that and not reduce levothyroxine yet as some people felt even more lethargic. does it sound like a good plan? I haven't had any side effects so far, but it's very early to tell and it's a minimal dose I've added.

McPammy profile image
McPammy

well done for finally getting T3 off the NHS. I’m on 5mcg Morningside also twice a day. My levothyroxine wasn’t lowered when I started combing with T3. The reason for not lowering my levothyroxine is because my level wasn’t over the range, it was slightly under the top of the range. However, after a few months I felt a little over medicated so I lowered my levo down from 75mcg a day to 68mcg a day. Easy for me as I take liquid form. So, if you start to feel over medicated then drop your T4 by a very small amount say 10%. Try and keep your TSH away from being suppressed otherwise the NHS may well pull your prescription. My TSH is never suppressed now and I have no issues with repeat prescriptions or problems with my NHS Endo.

KCFryer profile image
KCFryer in reply to McPammy

Hi McPammy! Thank you so much for your help. My TSH, free T4 and free T3 are optimal close to top range, so no clue on how to manage my dose from now on. I'm basically having T3 to try helping a possible DIO2 polyphormism once I'm biochemically euthyroid but still symptomatic. My TSH is already suppressed, so I might need to reduce levothyroxine to prevent a further suppression.

Last results are:

Serum TSH level 0.28 mu/L [0.27 - 4.2]

Serum free T4 level 20.6 pmol/L [12.0 - 22.0]

Serum free triiodothyronine level 5.2 pmol/L [3.1 - 6.8]

McPammy profile image
McPammy in reply to KCFryer

I’d be careful adding T3 if your T3 is already that high. Have I understood correctly that you were not on T3 when these blood tests where done? I’m a believer that you need adequate t4 and t3 not to go over range for sure I’m also a believer in keeping your TSH just about in range If my TSH is suppressed meaning I’m taking too much and my levels are too high I feel awful I know we are all different and we have to find our own sweet spots Have you considered doing the DIO2 gene test through Regenerous Laboratories this is the only way to confirm if you are positive or not I did the test and mine was positive

KCFryer profile image
KCFryer in reply to McPammy

I wasn't taking T3 when I had the bloods done. I've had lots of oscillations on my bloods in the last 3 years although taking them under the same conditions (time, fasting etc). Now that the NHS offered me the trial, I'll wait before I test the DIO2 polymorphism. If I'm not wrong, being biochemically euthyroid, doesn't mean T3 is being used on a cellular level. I think it's just because of that and because NHS doesn't test DIO2 that they agreed with the trial. I've started taking T3 today. Because I heard from other people I should take it very slowly, I've decided to have 5mcg split in 2 doses rather than 5mcg twice a day. During a couple of weeks I'll try that and not reduce levothyroxine yet as some people felt even more lethargic. I haven't had any side effects so far, but it's too early to tell and it's a minimal dose I've added.

thyr01d profile image
thyr01d

Hi KCFryer and thank you for posting your success, I think it really helps those who think the NHS won't prescribe T3. I am sorry but I can't advise on your Levothyroxine. When I was started on T3 it was in place of the Levothyroxine and started on a very low dose then over a few years increased up to the current 30 mcg per day. If it helps to know my thyroid is "doing nothing", TSH was over 95 with 95 being coma level, so maybe you only need the 10 mcg and nothing else? In your shoes I would ask the endocrinologist and/or see if your GP has received a letter clarifying what you should be taking (unless it was your GP prescribing directly of course). I hope that's of some help.

KCFryer profile image
KCFryer in reply to thyr01d

Thank you! Before assuming NHS wouldn't do, I preferred to insist. Luckily, GPs in my surgery never denied testing everything I suggested, including free T3. I was lucky to have found an endocrinologist that listened to me in the end. It wasn't an easy journey as I was referred in 2021 and spoke to 3 different doctors who didn't seem to have a plan and just made me wait for the next follow up appointment. They couldn't find any other causes for my symptoms. I've started taking T3 today, as I heard from other people I should take it very slowly, I've decided to have 5mcg split in 2 doses rather than 5mcg twice a day. During a couple of weeks I'll try that and not reduce levothyroxine yet as some people felt even more lethargic. I haven't had any side effects so far, but it's very early to tell and it's a minimal dose I've added.

thyr01d profile image
thyr01d in reply to KCFryer

🙂

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