Starting T3/lio (part 2): I am still feeling... - Thyroid UK

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Starting T3/lio (part 2)

Lilacsocks profile image
30 Replies

I am still feeling anxious about adding in the T3 I've finally been prescribed by NHS.

I would love to hear reassuring stories from anyone who feel that have been successful for them...and I have a few questions.

Ive been told spilt the dose, what time is best/worked for you?

Do I need to keep it away from all food/drink/supps like levo?

How much did you start on and how much did you drop Levo by?

Anything you would have done differently?

Thanks!

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Lilacsocks profile image
Lilacsocks
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greygoose profile image
greygoose

Ive been told spilt the dose, what time is best/worked for you?

I take mine all in one go to flood the receptors. It works for me.

Do I need to keep it away from all food/drink/supps like levo?

To be on the safe-side and assure maximum absorption, yes.

How much did you start on and how much did you drop Levo by?

I went from NDT to T3 only, and started on a rough equivalent of 6 grains. I dropped levo completely. (I'm probably not the best example for you.)

Anything you would have done differently?

Started on T3 much sooner than I did.

Lilacsocks profile image
Lilacsocks in reply to greygoose

Do you need a completely empty stomach, like with levo? It's a it more tricky then if you taking in the morning. What about supplements? I take

magnesium

B complex

Vitamin d.

How do you fit them all in!

SlowDragon profile image
SlowDragonAdministrator in reply to Lilacsocks

Take vitamin B complex and vitamin D after breakfast

Magnesium in evening

SlowDragon profile image
SlowDragonAdministrator

I was on 125mcg levothyroxine, all vitamin levels optimal and year after being diagnosed as gluten intolerant

Endocrinologist reduced levothyroxine by 25mcg and (initially) added 2 x 5mcg T3

I actually started by reducing levothyroxine by 12.5mcg

Waiting 3-4 days then added 2.5mcg T3 waking and 2.5mcg late afternoon

After week, reduced levothyroxine further 12.5mcg and few days later increase T3 to 5mcg twice day

Retested after 6-8 weeks

Endocrinologist then increased T3 to 20mcg - 10mcg, 5mcg and 5mcg

Was advised by endocrinologist to take at 6am, noon and 6pm

After 2-3 months found by experimenting that timing was better 7am, 3pm and 11pm

After 4-5 months, needed to increase levothyroxine back up, as Ft4 was right at bottom of range

I now take 125mcg 4 days week and 112.5mcg 3 days week

This gives Ft4 approx 50% through range and Ft3 just over 6 (3.1- 6.8)

Lilacsocks profile image
Lilacsocks in reply to SlowDragon

What happened to your TSH with these changes?

SlowDragon profile image
SlowDragonAdministrator in reply to Lilacsocks

My TSH had been very low, but not suppressed , for years on 125mcg levothyroxine (typically 0.4 range 0.27-4.2). Ft3 always low, under 4.5, sometimes under 4 (3.1-6.8)

Before endocrinologist considered adding T3 …….I did 8 weeks on reduced levothyroxine, down from 125mcg to 112.5mcg …..TSH did move a little, up to 1.8 ……But ….Ft3 dropped below range

Now on T3 my TSH is always suppressed. 0.01….occasionally 0.02

Lilacsocks profile image
Lilacsocks in reply to SlowDragon

Thank you for sharing. I guess your T4 was right at the top of the range when you were on levo?

SlowDragon profile image
SlowDragonAdministrator in reply to Lilacsocks

Yep

So was on 125mcg approx 20 years….Ft4 typically 21 (12-22)

Tried increasing to 150mcg …….pushed Ft4 over range and felt extremely unwell.

Tried 137mcg …..almost as bad

More on my profile

humanbean profile image
humanbean

You might find this link reassuring :

healthunlocked.com/thyroidu...

Pixielula profile image
Pixielula

I was on 250 levo went on to 60mcg lio, one day I stopped levo the very next day I started the liothyronine I took the dose all in one go as advised by my GP. For me it felt like I had been stumbling around in the dark for years and suddenly the light was turned on! T3 gave me my life back….. I didn’t take it on an empty stomach back then cause I never knew I had to. And the last few years I have started splitting the dose 40 in the morning and 20 when I go to bed. Why the anxiety lilacsocks?

Maya_83 profile image
Maya_83 in reply to Pixielula

Wow.. I get told I take alot of t3 and I'm on 25mcg. Did you find it working better splitting doses?

X

Pixielula profile image
Pixielula in reply to Maya_83

I don’t take any T4…. So only on T3 I know a lot of people do a combo, but I don’t. I have been on that dose for 12 years now

crimple profile image
crimple

Lilacsocks, what were your most recent results for TSH, T4 and T3, anything more recent than Nov 21? You may need to reduce you levo by 25mcgm and then start with 5mcgm of lio added with your levo. I took it very slowly until over about a year I had increased the lio dose to20mcgm Uni Pharma. When the NHS gave me a scrip I started with 15mcgm and didn't feel the need to add more. I split my dose, 10mcgm in morning with levo and large glass water when I wake up and delay breakfast for and hour. In the evening I take 5 mcgm lio about 9.30, well away from dinner.

Zephyrbear profile image
Zephyrbear

I was on 200mcg of T4 and my endo suggested I drop that to 50mcg for 3 days before introducing 10mcg of T3 at 6ish am and another 10mcg around 11ish again around 5pm. So I dropped 150mcg T4/day which was replaced by 30mcg of T3 split into 3 doses. From the moment I took the first dose, I felt as if my brain was switched back on and I got my life back! Since then, with his supervision and subsequently on my own after he retired, I was allowed to play around with my dosages until now, when I feel best on 25mcg T4 taken at bedtime, 30mcg T3 at 6ish am and another 20mcg T3 at around 4.15pm. My blood results give the present endos the collywobbles but I assure them I feel fine and know what I’m doing and they leave me alone. To date all my DEXA scans have come back fine and I’ve had no AF they keep promising will happen with a TSH unreadable for 11 years! Good luck and listen to your body.

McPammy profile image
McPammy

I originally was on 75mcg Levothyroxine a day. This took my T4 level to the top of its range in blood test results. I was prescribed to add 5mcg T3/lio twice a day leaving a gap of 8hrs. And not a drop my Levo dose. This worked exceptionally well for myself. I take my T3/lio with gaps of 8hrs as I am a very poor converter of T4 Levo to active T3. It makes sense to leaves a gap between ingestion if you are a poor converter. T3 lasts about 8 hrs. It peaks at about 2-4 hours. It does have a half life of 1/2 days also. T4 Levothyroxine just sits in your body waiting to convert to active T3 when needed but if you are a poor converter that doesn’t work very well. Also check your b12, vit D, folate and ferritin as often people living with thyroid issues have low vitamins.

Always do you thyroid bloods without ingestion of your medications. But remember as soon as you do take your meds your blood levels will significantly increase. Your levels tend to need to be half way prior to ingestion. A TSH of 1.00 is the aim if you can do it. Most healthy people have a TSH around 1.00. Anything above 2.5 is in the hypothyroidism territory. You might not feel good either if your TSH is suppressed. It can be tricky to balance your medications to achieve a TSH around 1.00.

I’ve never felt as energetic or youthful since I started my combined treatment of Levothyroxine plus Liothyronine T3.

Lilacsocks profile image
Lilacsocks in reply to McPammy

What was your TSH when you were on levo?Mine is already supressed I am worried it will go down even more.

McPammy profile image
McPammy in reply to Lilacsocks

My TSH was too high as my T3 was very low. I was only converting 8% of T4 Levothyroxine to active T3. My T4 on 75mcg was at the top of the range.

My TSH is now 0.90(0.35-5.50). My T4 and T3 are both midway on my latest tests in Jan this year. This was without ingestion of my meds prior to the blood draw. I get my full bloods done every 3 months , got my next one on 14 Apr.

Sounds like you may need to decrease your Levo before you add any T3 if T4 is too high.

susiebow profile image
susiebow

Hi,I have been adding t3 10 mcg to 62.5 mcg of thyroxine,for 2 months now.I took it as I started too reduce thyroxine at the same time.I did feel shaky,Idecided to reduce thyroxine first for 2 weeks then add t3.Felt a lot better when started adding t3 then.I must say I have been feeling better,more calm.I just take the 10 of t3 in the morning with thyroxine.There is tweaking to be done ,waiting for call from Endo Nurse to get bloods done and questionnaire about my symptoms and they may adjust my dose.I would say don't worry,I am so glad I started t3.

shaws profile image
shawsAdministrator

I take T3 only. I take one full dose when I awake with one glass of water and wait an hour before I have breakfast, Some prefer a bedtime dose.

I follow a method that Dr John Lowe advised (he has since died due to an accident). He was a scientisgt/researcher/doctor and he was also an Adviser to Thyroiduk before his accidental death. He would never prescribe levothyroxine.

He prescribed NDTs (natural dessicated thyroid hormones) - the original from 1892 and it saved lives from then on or T3 (liothyronine) for patients who were 'resistant'. NDTs also contain all of the hormones a healthy thyroid gland would do.

He would never prescribe levothyroxine. He took his T3 dose in the middle of the night - when he awoke so that nothing could interfere with his T3's uptake.

Levothyroxine (T4) is inactive and has to convert into T3 (liothyronine).

I have no symptoms and feel well.

Request GP to test B12, Vit D, iron, ferritin and folate.

healthunlocked.com/thyroidu...

Lovecake profile image
Lovecake

I was on thyroxine. 100 x 5 days and 75 x 2 days per week.I lowered my dose to 75mcg per day 2 weeks before adding T3.

I added 5mcg T3 for one week then another after that.

I take my B vits with my breakfast, T4 plus 5mcg T3 an hour before lunch and used to take magnesium 4hrs before bedtime when I took another 5mcg T3.

I felt amazing! This lasted about 5-6weeks. Then settled to feeling miles better than when on T4 only.

After 2 years I needed to up my T4 a bit. It’s now back to the 100x5 and 75x2.

I’ve also added 2.5mcg T3 as I was struggling (to be honest I always thought I should have had this but was too nervous to try it).

I now take 5mcg T3 an hour before lunch, 2.5mcg an hour before evening meal and 5mcg in the night when I wake to spend a Penny. I sleep better with taking this one in the night.

I take my magnesium approx 9pm now.

I’m actually going to change taking my thyroxine to the nighttime with one 5mcg of the T3 to see if that suits me.

I get a mild headache if I take too much thyroid meds. I get dreadful migraines with vomiting if I don’t have enough.

Go by how you feel. Be brave, this community is amazing and you will get loads of support.

Take your T3, and post on here how you are doing. Hopefully you will say you feel great. 🙂🧁

Gilbo72 profile image
Gilbo72

I am watching this post with interest. I am like Lilasocks, I am about 4 weeks in to my new NHS prescribed T4/T3 combo. My last numbers before adding T3 were:

T4 range: 12.3-20.2, T3 Range: 3.70-6.70.

On 142mcg of Levo

Sept 20:

TSH: 0.12, T4: 28.10 (200%) T3: 3.90 (7%)

June 21:

TSH: 0.04, T4: 29.20 (214%) T3: 4.50 (27%) ( I felt really good then!)

Feb 22:

TSH: 0.22, T4: 28.00 (199%) T3: 3.50 (-7%) (felt really, really awful and put on 9lbs in 6 weeks)

My endo, reduced my Levo from 142mcg to 100mcg and has added 10mcg of T3.

I decided to start taking my Levo in the morning with my T3, I experimented with taking T3 all in one go (I would prefer to do it this way), but I have for the moment settled on taking levo and 5mcg of T3 about 6.30am and 5mcg of T3 about 2pm. I just felt I was having a bit of a crash in the afternoon, when I took it all in one go.

I was worried about dropping my T4 so fast in one go. We had the discussion of reducing the levo to 115mcg, but the endo said he would prefer to drop it to 100mcg as my levels were so high. The first 2 weeks were a bit ropey as my body got used to it.

BUT, the minute I added the T3 it felt like I was on oxygen. I had no idea how used to the feeling of being lethargic and low in mood I had got used to. My sleep practically and drastically improved overnight. (For years I have had disrupted sleep, not able to drop off, waking up at 3am for several hours, I actually had begun to dread going to bed). I am now sleeping like a baby, waking up, bing! Feeling so positive and proactive and able to get out of bed within minutes of waking up... whooo! My mental clarity came back. I am proactive, don't feel like I have early dementia, and enthusiastic about life again

So I am due to get my bloods done in a couple of weeks which will be interesting. Like Lilacsocks, I am worried my TSH will be suppressed.

HOWEVER, I do get really tired/sleepy now. So I think I need an increase in something, either T4 or more T3. I can fall fast asleep about 6pm. Can't keep my eyes open after 10pm. Great on one hand, I LOVE sleeping now! But, I have noticed, at the moment I am very sedentary - working from home, pottering around the house is fine. But the minute I do anything else more strenuous I will fall asleep earlier. But I definitely think, it's a huge improvement on mental clarity, positive mood. I haven't lost any of the weight gain yet.

I would be extremely interested in any studies that show that TSH should not be relied on when adding T3. Perhaps diogenes can help us out here?

diogenes profile image
diogenesRemembering in reply to Gilbo72

This highly important paper shows what you want:

Thyroid. 2017 Apr;27(4):484-490.

doi: 10.1089/thy.2016.0426. Epub 2017 Feb 6.

Biochemical Markers Reflecting Thyroid Function in Athyreotic Patients on Levothyroxine Monotherapy

Mitsuru Ito 1 , Akira Miyauchi 1 , Mako Hisakado 1 , Waka Yoshioka 1 , Akane Ide 1 , Takumi Kudo 1 , Eijun Nishihara 1 , Minoru Kihara 1 , Yasuhiro Ito 1 , Kaoru Kobayashi 1 , Akihiro Miya 1 , Shuji Fukata 1 , Mitsushige Nishikawa 1 , Hirotoshi Nakamura 1 , Nobuyuki Amino 1

Affiliations expand

PMID: 28056660 PMCID: PMC5385443 DOI: 10.1089/thy.2016.0426

Gilbo72 profile image
Gilbo72 in reply to diogenes

Thank you! diogenes

Lilacsocks profile image
Lilacsocks in reply to diogenes

how do we read this?

diogenes profile image
diogenesRemembering in reply to Lilacsocks

Enter this into your computer:

doi: 10.1089/thy.2016.0426

This will open the thread

Batty1 profile image
Batty1

I take 10mcg T3 in 2 doses because taken all at once for me caused palpitations.

Poniesrfun profile image
Poniesrfun

I wrote this up as a “general” guide for starting T3 for thyroid cancer patients . Understanding that in the UK you might not have as much doctor cooperation. thyroidcanceradvocates.net/...

shaws profile image
shawsAdministrator

I love T3 and it loves me too as it alleviated all of my awful palpitations I had on levothyroxine.

On T3 only, my heart beats normally. I have no clinical symptoms at all and feel well. On T4 (levothyroxine) caused awful palpitations every night and cardiologist was contemplating putting an implant in my heart to 'see what was going on'. I have never needed to consult with him again.

I was fortunate to join this forum when a scientist/researcher/doctor who was also an Adviser to ThyroidUK before his demise due to a bad fall that caused a bleed in his brain. His name was Dr John Lowe.

He would never, ever prescribe levothyroxine. He would prescribe NDTs (the original thyroid replacement that saved patients (who had hypothyroidism) from 1892. or liothyronine (T3) for those who were 'resistant'.

Dr John Lowe also took T3 (liothyronine) himself and he took his in the middle of the night so that nothing interfered with its uptake. He did not split his dose and neither do i.

I have been prescribed T3 and absolutely love it as it has restored my health and am symptom-free.

I take T3 when I awake (once daily and I take 25mcg) with one full glass of water and I feel well.

Dr Lowe stated that one daily dose saturates all of the T3 receptor cells and we have thousands I believe and then the cells 'send out waves throughout the 24 hours' and could last one to three days. I trialled this and took dose on day one, none on day 2 and none on day 3 and 'yes' I felt find and began daily dose again.

drlowe.com/thyroidscience/l...

Dr Lowe was loved by many people especially patients for whom their symptoms were resolved.

I take T3 when I awake with one glass of water and wait an hour before I eat so that nothing can interfere with its uptake.

p.s. 25mcg of T3 is approx equal to 100mcg of T4.

Beverleyb profile image
Beverleyb

T3 gave me back my life , it felt as if a light had been turned on . The only regret is not knowing about it sooner. I take 100mg thyroxine and 10mg t3 split in 2 , I make sure I don’t eat an hour before or after taking the meds . Good luck 😉

shaws profile image
shawsAdministrator

I, too, take T3 alone. I feel well and have have never had problems with T3. My dose is low but some people who are 'resistant' might need a higher dose than would be 'normal'.

I take one daily dose as recommended by Dr John Lowe, who stated that one dose (he himself took T3) daily saturated all of our T3 receptor cells and they, in turn, sent out 'waves' throughout the 24 hours.

Levothyroxine (T4) didn't do me any favours as it gave me serious palpitations. Liothyronine (T3) resolved them but most of all restored my health and I feel fine with no symptoms at all.

I follow the advice of a doctor/scientist/researcher (deceased through an accident) who was an Adviser to TUK before he died. His death was caused by a bad fall that caused a serious blood bleed in his brain.

His name was Dr Lowe who would never prescribe T4. He prescribed NDTs (natural dessicated thyroid hormones (the very original to be given from 1892 and people no longer died). In the UK, NDTs were withdrawn not too long ago for some unknown reason to me in the UK and I doubt any of the 'experts' who decided to do so know much about clinical symptoms and how to relieve them.

Dr John Lowe was loved by all his patients as they were able to relieve their clinical symptoms and felt they had normal health once more.

Dr Lowe's wife, Tammy now runs his website.

web.archive.org/web/2010103...

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