Starting on T3, what can I expect?: After... - Thyroid UK

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Starting on T3, what can I expect?

Runner25 profile image
36 Replies

After spending the last 2 years with horrible Hashimoto symptoms on Levo only, I’ve finally been prescribed T3 by my new specialist. I’m going to be taking 5mcg 3 times a day and I’m just wondering what to expect and how long it takes to work?

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Runner25 profile image
Runner25
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36 Replies
shaws profile image
shawsAdministrator

15mcg is a small dose. I don't see the reason he is splitting your dose as your total T3 is15 mcg , Its good he is prescribing for you and I hope it relieves your symptoms. 25mcg of T3 is approx equal to 100mcg of levothyroxine.

I take T3 alone. It is the only thyroid hormone replacement that suits my body and I feel well and that my health is 'normal' due to symptoms resolving with T3.

25mcg of T3 is approx equal to 100mcg of levothyroxine.

I follow Dr John Lowe's advice who was an Adviser to Thyroiduk.org.uk and he was a scientist/researcher/doctor but is now deceased due to an accident. He himself took T3 in the middle of the night with one glass of water so that nothing interfered with its uptake. He was still able to do his research. He stated that T3 had to 'flood'the T3 receptor cells and it sends out 'waves' throughout the 24 hours for up to three days.

Our stomach has to be empty when taking T3 as food could affect the conversion.

I wish you success with T3. It certainly made an enormous difference to me.

Runner25 profile image
Runner25 in reply to shaws

Thank you, I really hope it does help. I take my T4 in the early hours as I naturally wake up for a few minutes then. I don’t want it to interfere with my sleep though!

Shield-Maiden profile image
Shield-Maiden in reply to Runner25

I take mine like that too, in the early hours....you might find that once you've taken it, you sleep better.

I take my full dose of T3, at the same time each morning (along with my T4). ...

When I first started taking T3, I too was directed to split my dose; for me however, it works better taken as one dose, not split.

Within a week of being on T3, I think you will start to feel better, see improvements.

Good luck

shaws profile image
shawsAdministrator in reply to Shield-Maiden

Dr Lowe stated that one daily dose saturated all of our T3 receptor cells and the effect of that one dose lasts between one to three days and sends out 'waves'.

I trialled this myself by taking one daily dose and taking none on day 2 or day 3. I still felt fine and didn't get any symptoms.

Shield-Maiden profile image
Shield-Maiden in reply to shaws

Thank you for sharing Shaws

SlowDragon profile image
SlowDragonAdministrator in reply to shaws

shaws many/most people on levothyroxine plus T3 only need very small 5mcg dose 2 or 3 times a day

Your dose is NOT typical

Goldengirl01 profile image
Goldengirl01 in reply to SlowDragon

I agree, I was given 20mcg to take in one dose, it nearly blew my head off because I didn’t know better. I was given advice on here to go low and slow starting with 5mcg then increasing slowly by 2.5mcg after a few weeks. I have no thyroid so I need some t3 but at the moment I am still now on 10mcg of t3 and 100mcg t4, I started t3 about 2 yrs ago, you cannot rush these things but saying that you may be able to tolerate changes better than me, just gradually add increase slowly, good luck.

shaws profile image
shawsAdministrator in reply to SlowDragon

I have only responded to people in order to help them (as far as I know) and state what Dr Lowe's advice was for people who took T3. or NDTs. .

He stated that one daily dose of T3 lasted between one to three days. He was also a scientist/researcher and doctor and expert in the use of T3. He would never prescribe levo.

I didn't make it up.

I recovered my health only by following Dr Lowe's advice - in that he stated that one daily dose of T3 should be taken in order that it saturates the T3 receptor cells and that one dose sends out 'waves' and lasts between one to three days.

I trialled that myself, i.e. took my one daily dose of T3 - took none on day 2 and none on day 3 and I had no ups/downs and still felt well. I began on the 4th day my daily dose.

I am like many on the forum - could not improve one iota on levothyroxine. It is also a pity that NDTs have been removed despite it saving lives from 1892 onwards. I believe NDTs contain all of the hormones a health thyroid gland would do. It's also a pity it was removed by those one would have thought would be knowledgeable.

I am not recommending that people take large doses of T3.

Runner25 profile image
Runner25 in reply to shaws

Thank you. It’s all really helpful.

in reply to shaws

Some say that T3 can be taken with food as different from levo, for instance Paul Robinson in "The thyroid patient´s manual". Others recommend all thyroid hormone is taken with food, for instance Dr. Myhill (quoting the late Dr. Blanchard), the idea being that thyroid hormone taking on an empty stomach can cause cravings and an upset stomach.

shaws profile image
shawsAdministrator in reply to

I took Dr Lowe's advice as he became interested in hormones when a teenager as some of his relatives had committed suicide, which led him to become a doctor and researching what could possibly be the reason to cause suicide (depression?) and found that very low T3 could have been the reason.

We have the most T3 receptor cells in the brain and heart and both need T3.

Dr Lowe was an Adviser to Thyroiduk before his accidental death. He would never, ever prescribe levothyroxine - only NDTs (natural dessicated thyroid hormones) or T3 for those who were resistant.

I take my dose when I get up with one glass of water and wait an hour before I eat- I have no clinical symptoms and normal health i.e. healthy.

in reply to shaws

Sorry, which conversion can be affected if T3 is taken with food?

SeasideSusie profile image
SeasideSusieRemembering

Runner25

Is this in addition to your Levo or instead of?

If in addition to Levo, has he reduced your dose of Levo? If so by how much and what are your current levels of TSH, FT4 and FT3? Some endos reduce Levo when there is no need.

If in addition to Levo it's not a good idea to go straight in with that dose. You need to take adding T3 slowly.

For those of us experienced in adding T3 to Levo the general advice is

1) Add 5mcg T3 which you can take with your Levo.

Wait 2 weeks to see if all is OK.

2) Add a second 5mcg T3, it's usual to take first 5mcg in the morning and the second 5mcg in the afternoon. I treat T3 the same as Levo for time gap between food/drink and taking your dose.

Wait another 2 weeks to see if all is OK.

3) Add the third 5mcg, either space the 3 doses 8 hours apart, some people take the third dose before bed. Or maybe take 10mcg in the morning and 5mcg in the afternoon.

When doing thyroid tests, the last dose of Levo should be 24 hours before blood draw and the last dose of T3 should be 8-12 hours before the blood draw even if this means adjusting the timing of dose(s) the day before.

Runner25 profile image
Runner25 in reply to SeasideSusie

Oh gosh ok, maybe I’m mistake about the dose then. I’ll check the prescription when they arrive. I’m decreasing from taking 75 mcg alternating 100 mcg Levo per day to just 75 every day. My T3 is 3.1 my TSH hovers around 1 and T4 I can’t remember, but was within lower range of normal.

SeasideSusie profile image
SeasideSusieRemembering in reply to Runner25

Runner25

My T3 is 3.1 my TSH hovers around 1 and T4 I can’t remember, but was within lower range of normal.

Endos make the mistake of thinking all patients need to reduce Levo when adding T3, regardless of where their FT4 lies.

Adding T3 is going to lower your FT4, that's just what it does. So if it's low in range anyway then it will go lower by adding T3.

If your FT4 was above, say, 80% through it's range I'd say yes, see what happens if you lower your Levo as well as adding T3, but with an already low FT4 then it really doesn't need reducing. This is where many T3 trials fail, the Levo gets reduced, T3 is added, patients feel no better or even worse with the lower FT4 and the patient is told they haven't benefitted from T3.

See if you can get your FT4 result and range, it's important that you don't reduce Levo if your FT4 is already low (but your endo wont know this).

in reply to SeasideSusie

Good that you point ths out! It seems even more knowledgeable doctors believe you need to lower levo when adding T3.

SlowDragon profile image
SlowDragonAdministrator

Yes this is typical dose of T3 alongside levothyroxine for many many members

Best to start SLOWLY

adding just 5mcg waking the first few days

(You might even try 2.5mcg waking and mid afternoon for first day ….)

Assuming 5mcg waking is ok, after few days add 2nd 5mcg dose mid afternoon

If that’s ok …..after a week or so, add 3rd 5mcg dose late afternoon or at bedtime

Many people find last 5mcg dose at bedtime improves sleep

But others find taking last dose too late keeps them awake

Runner25 profile image
Runner25 in reply to SlowDragon

Ok thanks. If it’s not ok, what happens?

SlowDragon profile image
SlowDragonAdministrator in reply to Runner25

You might get irregular palpitations, or fast heart rate

If so hold at that dose and don’t increase ….might need to go slowly and wait at that dose

Runner25 profile image
Runner25 in reply to SlowDragon

Ok thank you.

Runner25 profile image
Runner25 in reply to SlowDragon

I’m now on 5mcg twice a day taking about 6am and midday ish. No palpitations or anything like that. I’m still pretty whacked by the evening if I’ve had a really busy daythough and then I start feeling cold and a bit fluey too so wondering if I should add the third dose yet? Or leave for another week? When I do add shall I take at about 5pm? I’m not the best sleeper and worry about taking it too close to bed.

SlowDragon profile image
SlowDragonAdministrator in reply to Runner25

You could try taking it at bedtime

You might find it improves sleep

Buddy195 profile image
Buddy195Administrator

I’m definitely in the slow & steady camp when changing or adding medication, as I get hyper- like symptoms (palpitations, increased anxiety, fast pulse etc) if I make larger changes. I followed advice from SlowDragon when adding T3 & all went well.

My Endo actually prescribed 20mcg liothyronine but I found I only needed to add 10mcg (to 100mcg Levo) to improve my symptoms/ results. I did reduce from 125mcg to 100mcg Levo first (but my T4 was higher than yours), then added 5mcg T3 before adding a second dose of 5mcg T3.

After trying different timings, I now take both thyroid meds on waking. This works for me, although others prefer to split the dose of T3.

Runner25 profile image
Runner25 in reply to Buddy195

That’s good to know and very helpful, thanks.

McPammy profile image
McPammy

I started T3 after many years failing on Levothyroxine alone. My Levothyroxine dose was not changed as it was just under the top of the range. I was advised to take 5mcg T3 twice a day 8hrs apart. I was previously in a terrible state and could barely walk or sit up. Within 2/3 days I had an immediate positive response. I could walk normally and do things around the house. As time went by I got more and more energetic. I joined a gym. I had to increase my T3 and add in a third dose of 5mcg in the evening. I realised it was a lot about energy expenditure. When I stopped the gym as covid arrived I went back down to twice a day. I do not agree that 5mcg twice a day is a low amount. It’s all individual. I also only need 75mcg Levothyroxine to get me to the top of that range. But remember when you get your bloods done it’s best to leave out your medications until after the draw or it’ll falsely spike. So bloods should always result not at the top of the ranges if you don’t want to go over which can cause lots of weird symptoms.

I’ve never looked back since starting T3. It’s been brilliant to say the least for me. My TSH is in range and hovers around 1.00. This is a healthy persons normal result too. I don’t agree with it being suppressed if you can somehow keep it in range. I’m a poor converter so taking T3 8hrs apart is the only way to get a good well-being. I’m also DIO2 gene positive. Ive lost over 4st without even trying in fact I eat more. I’m just full of energy and feel youthful.

T3 got my life back better than I’ve felt in over a decade.

Good luck. Think positive.

Runner25 profile image
Runner25 in reply to McPammy

I’m so sad and horrified that so many people are suffering in this way with absolutely no help from GP. I luckily have Private Healthcare paid for by my employer, if I didn’t I’d still be stuck with no hope of getting better, as I would not be able to afford the Fees. As it is I’m paying for my T3 as my insurance doesn’t cover private prescriptions, but I’m hoping it will be so so worth it to get back to where I was 3 years ago. I’m so pleased for you that you have got your life back. X

in reply to McPammy

This is a healthy persons normal result too. I don’t agree with it being suppressed if you can somehow keep it in range.The question is if we should try to mimic what happens in people without thyroid disease? As has often been pointed out here, hypothyroidism is not healthy. Thyroid hormone should be excreted from the thyroid gland throughout the day, not taken as a pill. Once we are hypo and have to take thyroid hormone by mouth, we no longer work like normal people. You are lucky to be able to maintain a normal TSH on T3 (and I say "lucky" because that means not having to fight ignorant doctors who only care about the TSH), but that cannot be the norm for everyone else. If someone needs T3, and cannot maintain an in-range TSH while on it, then wellbeing must be more important than lab results. We cannot control where our TSH ends up. My impression after reading hundreds of posts, here and elsewhere, is that a suppressed TSH is more common on T3.

McPammy profile image
McPammy in reply to

Strange this thread was months ago. The reason I try to keep my TSH in range is that my NHS Endo has threatened me that if it goes suppressed he will stop prescribing. So, I do my utmost to keep it in range by tweaking my liquid Levothyroxine doses and fortunately for myself I’ve managed to do it. My latest TSH last week is 0.90 (0.35-5.50). T4 and T3 midway in ranges. I do feel extremely well and happy.

I do realise that not all people on T3 and T4 medications manage to keep within NHS ranges. Maybe I’m lucky keeping it in range to be able to receive my Liothyronine from the NHS and full support from my NHS Endocrinologist and my private only Endocrinologist. Who both are extremely pleased with my recovery and outcome as I am.

My understanding of this fabulous forum is to share experiences and try and help others if possible. I’ve just shared my experiences that’s all.

in reply to McPammy

I am not saying your experience is not valid. What I react to is the expression "normal people". We are no longer normal since we are hypo. And our bodies can never work quite the same way since we need to swallow thyroid hormone and have it absorbed from our GI tract. It is impossible to predict how the pituitary gland will react to that influx of thyroid hormone. Also, people with Hasimoto´s can have Hashi swings that will suppress their TSH for some time. Many doctors will then foolishly tell them to lower their thyroid meds to normalise the TSH . I am happy for you that you feel fine. However, I don´think any thyroid patient should have to worry about keeping her doctor happy. If your doctor cannot see beyond the TSH, I have to say I am happy he is not my doctor. I am not criticising you but your doctor´s approach. There are so many members who write here daily about doctors lowering their meds or threatening to take away their T3 if their TSH is out of range.

McPammy profile image
McPammy in reply to

I agree it’s really not good having an Endocrinologist that threatens their patient. But I don’t want to lose my NHS Liothyronine and NHS support. I also agree once dependant on thyroid medication we are not ‘ normal healthy’. But I aim for it. All I personally want is my much needed Liothyronine and Levothyroxine of which without I doubt I’d survive. I’m striving to keep my thyroid hormones in a place that makes me feel well, energetic and happy. For me it’s proven that keeping my thyroid levels where they currently have been for the past 2/3 years after introducing Liothyronine T3 is best for myself. If I go suppressed I don’t feel well at all whether it’s too much T4, T3 or both. So it just happens to work out for me. I have the DIO2 gene positive so that may be something to do with it. I don’t fully know. Right now I’m doing really well out walking 8-10 miles with dogs every day walking along the Thames Ditton area and Surrey Hills. Life is good and I intend to keep that. As before I could barely sit up let alone walk. My friends and family cannot believe my recovery. I’ve never felt so positive about life.

in reply to McPammy

Another question: does your doctor look at your free Ts at all?

McPammy profile image
McPammy in reply to

No. They check TSH, T4, T3. Cortisol 9am. B12. Ferritin. Folate. Vit D. Lipids. I get it checked by the NHS every 12 weeks at the same time as I get my B12 injection. I’m a vegetarian.

My bloods have never been so good. I can compare through my patient Access over the years. My tests now work like clockwork.

in reply to McPammy

Do you mean total T3 and T4?

Clairewalker751 profile image
Clairewalker751

I seem to do best on a small amount of T3 4 mcg taken early hours of the morning with 150mcg of levo I tried NDT but found T3 levels went way to high

Runner25 profile image
Runner25 in reply to Clairewalker751

Thank you for the info.

LouBoo85 profile image
LouBoo85

Hi, can I ask whether you have all been prescribed t3 by an nhs gp? My dr has never mentioned t3 medication to me!! What do your t3 levels need to be above to need t3 medication? Thanks

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