For those on T3 only meds: Good morning everyone... - Thyroid UK

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For those on T3 only meds

Nessynu profile image
46 Replies

Good morning everyone. Im curious as to how much T3 meds that you take per day and how many times a day that you dose?

I currently take fast release T3 3 to 4 times a day as follows:

9am 20mcg

1pm 20mcg

6pm 10mcg

I have trouble falling asleep and im ofter still lying in bed awake at 1am and find I need between 5 and 10mcg as my hypo symptoms start to kick in. Im not looking to follow anyone else's protocol or dosing etc Im just curious about those taking 60mcg or above daily.

Thanks in advance

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Nessynu profile image
Nessynu
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46 Replies
shaws profile image
shawsAdministrator

I've taken T3 for a few years now. I started on levothyroxine but it gave me severe palpitations. I've also trialled NDTs. The latter has now been removed from being prescribed in the UK.

I take one daily dose of T3 - when I awake-- with one full glass of water and wait an hour before I eat.

Dr John Lowe recommended a one daily dose as it saturated all of the T3 receptor cells and they then sent out 'waves' throughout the day.

I am symptom-free with no clinical symptoms and feel well.

Dr John Lowe (now deceased) was an Adviser to Thyroiduk.org.uk and his links are helpful. He would never prescribe levothyroxine. He took his T3 in the middle of the night when he awoke so his stomach was empty. Unfortunately he had an accident which caused his early demise. You do not have to read the following.

healthunlocked.com/thyroidu...

Rowing2 profile image
Rowing2 in reply toshaws

Hi. I’m in the U.K. and can’t get t3 meds at all only levothyroxine which is not helping. I have hashimotos and underactive thyroid and a goitre. I am taking a mixture of supplements including berberine, but nothing is helping. Are you able to get t3 prescribed by a gp on the nhs.

Nessynu profile image
Nessynu in reply toRowing2

Hi Rowing2, I'm in Ireland but I have to pay privately for my t3.

Rowing2 profile image
Rowing2 in reply toNessynu

Can I ask where you buy it from?

Nessynu profile image
Nessynu in reply toRowing2

Its prescribed from my UK doctor and he sent the prescription to boots pharmacy.

Rowing2 profile image
Rowing2 in reply toNessynu

Is it extortionately expensive. I asked my pharmacist and it was over £200 a pack.

helvella profile image
helvellaAdministrator in reply toRowing2

The British National Formulary provides a convenient place to check current prices - more or less. They can be a bit behind real world costs.

bnf.nice.org.uk/medicinal-f...

Nessynu profile image
Nessynu in reply toRowing2

In Ireland I pay €52 for a months supply so its manageable.

Rowing2 profile image
Rowing2 in reply toNessynu

Can I also asked why did you and the gp feel you needed t3 and not t4 and do you now combine or only take t3. I’m really struggling and have done so much research and feel t3 is what I need. After three years I feel worse than ever on Levo and am getting nowhere. My health is just disappearing and I need to find a solution. I take so many herbal remedies and vitamin supplements, but nothing is helping and I’ve also gained over 2 stones in weight. I used to be incredibly fit, now I’m just loosing hope of any kind of normality. I’m grateful fir any advice. I have hashimotos a goitre and underactive.

Nessynu profile image
Nessynu in reply toRowing2

I can sympathise with you. I also have Hashimotos and hypothyroidism. My regular doc would only prescribe gave t4 and I was getting sicker by the day. I found a doc in the UK that had a bit more knowledge than mine and he suggested t3 to me. Its definitely made a different but I still feel unwell most days although I feel its because my stomach has never really recovered from chemotherapy (breast cancer 2016). Ive started making bone broth, vit d, vit c and zinc, omega 3, b12 daily and I'm at least functioning now compared to before taking all of these. What are your daily symptoms?

Rowing2 profile image
Rowing2 in reply toNessynu

Hi I’m so grateful for your reply. I’m taking vit d spray, zinc, alpha lipoc acid, multi vit including green mussels , berberine and of course the dreaded levothyroxine. 75mg although it’s been up and down over the last few years my autoimmune is in excess of 1,500 . I will write my own post as I research a lot he sees the berberine and alpha lipoic although it doesn’t seem to be doing anything. Before all of this I was a competitive rower and very fit, I now am incredibly weak, have major wrist issues( go says it’s carpel tunnel, but I know it’s not) , body pain, am lethargic, memory fuzziness, depression ( something I never had before), have put on over 2 stones in weight and from a tiny flat stomach I now look pregnant. I can’t now eat many things and as a vegetarian that’s super hard as I can’t have lots of pulses and spinach, kale etc. Oh yes and sometimes I can’t breath properly because if my goitre.

Nessynu profile image
Nessynu in reply toRowing2

Its a nightmare at times and I really know how you feel. I have most of your symptoms too and I was always on ghe go with a razor sharp memory and now I keep forgetting appointments and leaving the cooker on etc which for me is totally out of character. Fatigue, aches and pains, lethargic etc I have it all!But im on the mend! All I can suggest is going back to the start doing the following:

*AIP diet(avoid gluten, dairy etc)

*Get a FULL thyroid blood test

* get your vitamin levels tested (iron, ferritin, folate etc

* make sleep a priority

*find a better doctor!

*manage stress however you can

* and use this site fir any questions you may have.

I hope this helps.

shaws profile image
shawsAdministrator in reply toRowing2

We aren't permitted to post where you can get thyroid hormone replacements privately. Members will send a privatee message to a person who wants information.

Nessynu profile image
Nessynu in reply toshaws

Hi Shaws. Thanks for this information. Can I ask what dose you take in one go please? I've never taken more than 20mcg in one dose. I didn't think it was safe.

shaws profile image
shawsAdministrator in reply toNessynu

I used to take 50mcg of T3, now I take 25mcg. Ouf bodies dictate the amount, i.e. we either feel well and back to normal health or are symptomatic.

Nessynu profile image
Nessynu in reply toshaws

Thanks Shaw.

hackman profile image
hackman in reply toshaws

Hi Shaws. This is interesting - I have never heard of someone taking all of their T3 in one dose and I see that GreyGoose is doing the same. I would worry that this would make me feel overmedicated but it seems this is not your experience.

I currently take 75mcg total per day in three doses but would be interested to see if taking it all in one go would make any difference to me. I currently do pretty well although sometimes I do feel a dose wearing off so it would be great if this could be solved - but I have to admit to being nervous about taking it all in one go.....

shaws profile image
shawsAdministrator in reply tohackman

You can click on my name and read my journey to be diagnosed.

Due to taking one daily dose, my life continues as normal and I don't have to remember (if taking split doses) when a dose would be due.

I wake in the morning, take T3 with one full glass of water and wait an hour before I eat. I am well and symptom-free.

Dr Lowe (scientist/researcher/doctor and expert in T3) stated that T3 has to saturate all of the T3 receptor cells of which the brain and heart contain the most and that 'waves' occur throughout the day that enables us to feel well.

As Dr Lowe's site is archived I shall try to see if I can retrieve some for you to read.

With one daily dose we have a life and don't need to split doses and it is practically impossible, if we do split, to do so every single day for the rest of our lives.

The following are copied so if they don't open let me know.

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

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

web.archive.org/web/2010032...

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

shaws profile image
shawsAdministrator in reply tohackman

Dr Lowe stated that one full dose saturated all of the T3 receptor cells that then went out 'waves' throughout the day.

I was very unwell on levothyroxine and it did nothing to help me feel less unwell. p.s. my TSH was 100 when first diagnosed. Doctor had phoned to tell me there was nothing wrong with my blood test!

I also had extremely severe palpitations during the night and cardiologist was contemplating putting an implant in my heart to 'see what was going on'. Just then T3 was added to T4 and it immediately helped me feel much betterand I didn't need the procedure. I then took T3 alone.

Dr. Lowe took his dose - he was a researcher/scientist/doctor and expert in the prescribing of T3. He himself took 175 mcg of T3 as he had 'thyroid hormone resistance' and needed a larger dose that normal.

He stated that all T3 receptor cells had to be saturated and then it sent out 'waves' throughout the day.

I trialled that as I took one dose, took none on day ttwo or day three and I felt o.k.

When T3 was first added to T4, it felt like oxygen had flooded my body and I had an instant benefit.

hackman profile image
hackman in reply toshaws

Thank you for the information, Shaws. My TSH was 79 on diagnosis and I was very sick. Levo has done nothing for me either and I have been taking T3 for two years now.

Likewise, it was a lightbulb moment immediately after my very first dose of T3, which was very small at the time.

I have settled at 75mcg daily (3 x 25mcg). I am very symptomatic and get severe Raynauds in my feet when thyroid hormone is low which, whilst awful, has been really useful in determining dosage and timings of dose.

I can literally feel a dose take effect between 20 and 30 minutes after taking it. Similarly, I can feel it wear off which means that I sometimes have to bring forward a dose by fifteen or 30 minutes.

This idea of one dose and a constant supply of T3 in waves as and when the body requires it is very attractive - simply because I am so symptomatic and would solve my problem of adjusting timings to compensate for symptoms. But, I have to admit to being a little worried about taking the full 75mcg in one go as I am sensitive to feeling each dose when I take it - and I can feel the vasodilation happening as a result. I suppose I could try and keep milk thistle to hand if I feel overmedicated!

Do you know of others that this method of dosing works for?

Thank you for your time.

shaws profile image
shawsAdministrator in reply tohackman

On diagnosis my TSH was 100 and GP phoned and told me that your results are fine and you don't need any medication!!!! This comment was to someone who'd never, ever, heard of thyroid gland or thyroid hormones.

Dr Lowe had many followers and those are the ones who followed his method.

Dr L took 150mcg of T3 in the middle of the night.

For me, T3 immediately gave me the feeling of having normal health again and of feeling of oxygen filling my body.

At present my whole body is symptom-free. I feel well and that my health is normal.

If you want to split doses, keep in mind that whatever we decide is for a lifetime so we want the easiest method possible.

Please read all of greygoose responses below.

greygoose profile image
greygoose in reply tohackman

Similarly, I can feel it wear off which means that I sometimes have to bring forward a dose by fifteen or 30 minutes.

T3 does not 'wear off'. It's not aspirin. The half life of T3 in the blood is about 24 hours, but what gets into the cells - which is where it's active, it doesn't do anything in the blood - stays there for about three days. So, I'm not quite sure what it is that you're feeling when you think it's 'wearing off'. Perhaps just normal fatigue?

greygoose profile image
greygoose

I currently take fast release T3 3 to 4 times a day as follows:

Well, that's not going to work, for a start. You have to take the same dose every day with T3. Adding in the extra every so often is just going to confuse your body and make it more difficult to recover.

Have you tried taking it all in one go? Sometimes that's what people need to do to get the T3 into the cells: flood the receptors. Even if you are taking quite a high dose. :)

Nessynu profile image
Nessynu in reply togreygoose

Hi Greygoose, I've never taken it all in one go but its also never been suggested to me. Although I'm in Ireland I'm linked in with a doctor from the UK who thankfully has an understanding of the need for T3 but he has so far not mentioned taking it in one dose. He has just recently done a saliva cortisol test and the results weren't as bad as I expected so I'm booked in with him fir October for my next follow-up. Your right though, as I'm not completely consistent with dosage and times of my medication ie if I wake at 8am or 9am I will take my first dose etc and im am currently increasing from 15mcg to 20mcg for my morning dose.

greygoose profile image
greygoose in reply toNessynu

It's not so much the time you take it - the time I take mine varies every day - but taking the same amount every day that's important.

I doubt a doctor would suggest you take it all in one go. They were taught in med school that it has to be taken in split doses so that what they tell their patients. Most of them aren't capable of thinking outside the box. But, it is worth a try.

Nessynu profile image
Nessynu in reply togreygoose

I'm a bit hesitant to take 50mcg in one go as I'm afraid to be honest of having a reaction to so much at one go. Would increasing up my dose slowly be an option or is this usless? I do value your opinion on these things.

greygoose profile image
greygoose in reply toNessynu

You mean increasing the morning dose slowly whilst decreasing the other doses at the same time? Yes, it would eventually work.

But, how much of a reaction you would have to taking it all in one go - if any - depends on how much of that T3 gets into the cells. It doesn't do anything in the blood. It only becomes active in the cells. And, if you're having trouble getting it into the cells - hence the need to take it all in one go to flood the receptors - then you aren't going to have much of a reaction. At one point I was taking 225 mcg T3 all in one go, just before going to bed, and slept like a log! No reaction. I've been able to reduce my dose a lot since then, and am also taking 50 at the moment - all in one go in the morning. But, the reaction - or lack of it - is exactly the same as when I was on 225 mcg. We're all different and all have to find out, through trial and error, what works for us.

Nessynu profile image
Nessynu in reply togreygoose

I naively taught that if I took 30/ 40 mcg in kne go ghat I would become hyper and start having palpitations etc! Thank you putting me straight greygoose.

greygoose profile image
greygoose in reply toNessynu

Well, you can't 'become hyper' if you are hypo, that's a physical impossibility. :) You could be over-medicated, but that's not likely as you're not increasing your total dose. And palpitations can also be a symptom of under-medication.

But, it won't hurt to try. If you try it one day and have an unpleasant reaction, don't do it again. But, it's not going to cause any permenant problems or do any damage. And - who knows - you might feel better! :D

Nessynu profile image
Nessynu in reply togreygoose

Thank you so much greygoose. Again the information I've gained on this site is invaluable. I think I do need to flood my cells with t3 as increasing slowly has not done much to aliviate my symptoms so far.

greygoose profile image
greygoose in reply toNessynu

Ah! Be careful. Flooding the receptors has nothing to do with the rate at which you increase. You still need to start hormone - all hormones - at a low dose and increase slowly. With T3 that means starting on 5/6.25 mcg - depending on the size of the pill - and increase by 5/6.25 mcg every two weeks. Any faster, or greater increases are countre-productive.

Flooding the receptors is to do with how much you take in one go, not how fast you increase.

Nessynu profile image
Nessynu in reply togreygoose

So just too be sure I understand, I'm currently taking 20mcg in the morning, 20mcg afternoon and 10mcg evening. Should I try taking 50mcg in the morning and see how I go?

greygoose profile image
greygoose in reply toNessynu

I thought you wanted to do it in easy stages - i.e. slowly increase the morning dose as you decrease the other two doses, until you're taking it all in the morning. That might be the best way to do it as you're nervous about it.

Nessynu profile image
Nessynu in reply togreygoose

Thank for the clarification greygoose. I understand now. My brain is slower than it used to be! I will be starting tomorrow by increasing my morning dose by 5mcg to 25mcg and reducing my evening one by 5mcg and so on. Im hoping it helps.

greygoose profile image
greygoose in reply toNessynu

Let us know how you get on. :)

Nessynu profile image
Nessynu in reply togreygoose

I will indeed! Goodnight all and thanks.

shaws profile image
shawsAdministrator in reply toNessynu

T3 sends out 'waves' throughout 24 hours of the day - it does not 'flood' your system -

-. it saturates your T3 receptor cells. You should leave an hour to elapse after taking Thyroid hormones.

Nessynu profile image
Nessynu in reply toshaws

Thanks shaws.

shaws profile image
shawsAdministrator in reply toNessynu

I had very severe palpitations (during the night) that the cardiologist was flummoxed and was considering putting an implant in my heart to 'see what was going on'. Just then T3 was prescribed to T4 and I immediately felt and improvement, but taking T3 only enabled my symptoms to disappear and I felt well and 'normal health'.

Nessynu profile image
Nessynu in reply toshaws

Hi shaws, did you start low on t3 and work your way up or did you take a full dose in one go?

shaws profile image
shawsAdministrator in reply toNessynu

I started on the equivalent dose of T4. I had an instant good response.

As Dr Lowe was an Adviser to Thyroiduk he was always ready to respond to a question. I took a low dose but because it doesn't need to be converted (as T4 does) you can start slowly and increase.

Nessynu profile image
Nessynu in reply toshaws

Thats so scary to think you almost had unnecessary heart surgery! Thank god for T3 medication.

Rowing2 profile image
Rowing2 in reply togreygoose

Hi grey goose can I ask where you get your t3 from thank you?

greygoose profile image
greygoose in reply toRowing2

I would suggest you write your own post, introducing yourself and giving your lastest blood test results, and all your details. No-one is going to divulge their sources to someone they know nothing about. :)

Rowing2 profile image
Rowing2 in reply togreygoose

Hi there me again. I will do that of course, but as this was so relevant to me I thought it was ok to ask. I didn’t think I was asking anyone to divulge anything, is there something wrong with asking where you get it from. When I joined the site, I filled in all the criteria regarding myself, so I thought that was all I needed to do. Sorry if you feel I’ve asked too much.

greygoose profile image
greygoose in reply toRowing2

No, you haven't asked too much, but we have to be careful. There are those in authority that would like to shut down all sources of prescription medication without a prescription, even thoush it is legal to buy it. And, many sources have disappeared over time, with no explication. We never mention sources on the open forum for exactly that reason.

Given that there are so few sources now left, they are pretty precious, so we like to know to whom we are giving that information. You may have filled in all the criteria when joining the site, but that information is not shared with the rest of us. And you haven't given any information at all on your profile:

healthunlocked.com/user/Row...

Nor have you ever posted any information or questions. We do like to know who we're dealing with in as far as we can. :)

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