T3 advice needed please!...: I have purchased T... - Thyroid UK

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T3 advice needed please!...

Tanya40 profile image
37 Replies

I have purchased T3 (25mcg) as my doctor told me that it's not prescribed?...

I'm currently taking 225mcg of Levo and I'm not sure how much I need and when it's best to take T3 or should I drop Levo altogether or maybe combined the two? Any advise will be gratefully received.

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Tanya40
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37 Replies
GentleOrange profile image
GentleOrange

I read that T3 is anywhere between 2 and 5 times as powerful as T4. I think I would be cautious, maybe cut Levo to 175 or 150, then take half a T3 tablet in the afternoon, and keep a close eye on how you feel. Does your GP know you bought it?

Tanya40 profile image
Tanya40 in reply to GentleOrange

Hi, thanks for the reply

My doctor actually said that I can buy it privately but didn't give advice as to how to take it. So do you think it best if I take Levo in the morning and T3 in the evening?

GentleOrange profile image
GentleOrange in reply to Tanya40

I take mine between 1-3pm. Any later and you can find it keeps you awake! But T3 is fast acting, I notice a difference within an hour of taking it.

shaws profile image
shawsAdministrator

Usually, when T3 is added to levo you drop 50mcg of levo for 10mcg of T3. I took mine together and noticed an immediate improvement. Some switch directly from T4 to T3 and some slowly reduce the T4 whilst increasing T3.

This was a similar question asked previously.

healthunlocked.com/thyroidu...

Tanya40 profile image
Tanya40 in reply to shaws

Hi Shaws, thanks for your time. So if I'm right that means I drop 125 Levo for the 25 T3. You say you noticed an immediate difference, can I ask how you felt?

nobodysdriving profile image
nobodysdriving in reply to Tanya40

Tanya, whilst you are potentially right with your calculation above it is also not as straightforward. It depends on many factors what you do and how...

why are going to take T3 (may be obvious but we cannot assume....)

what are you long term plans? combination T4/T3 therapy or T3 alone? or you want to just see where you go with it?

what are you current symptoms/blood test results on Levo only and how long have you been on the current dose of Levo?

Have you ever taken any T3 in your life? if so how did you react?

some answers for now...

if you have never taken T3 then I'd advise to start low and go slow....so start at 10mcg daily rather than 25mcg

as to if and how much drop the T4 it depends on the things above.

sounds like your doctor does not know you are doing this, consider telling them so that you have someone to at least 'monitor you'.

Moggie profile image
Moggie

Hi tanya,

Have just been reading your other questions and was a bit concerned regarding your results and the taking of T3. Your results with a TSH of 0.01 and a FT4 result that is well over the top range I would be very cautious of taking T3 if it was me.

I took T3 with my GP's guidence and found myself in trouble with heart issues (and that was with my GP's input), I dread to think what would have happened to me if my GP had not stepped in to sort things out - she acutally took me off of the T3 and sent me to an endo who after correcting low vitd and very low iron I am almost back to my pre thryoid health. What I am trying to say is, like you I thought a magic pill could sort out my problems (T3), but it turned out to be totally the wrong thing for me as I didn't need T3 at all - hence the heart troubles - and it was a conbination of low vitD, low B12 and very low iron which was rendering my T4 almost useless that was the trouble, hence why I was getting no better.

If I were you I would look at ALL other avenues first and then, and only then, start to consider T3 or better still maybe NDT as it does not have such an instant inpact on your heart.

Moggie x

Tanya40 profile image
Tanya40 in reply to Moggie

Hi Moggie, Sorry but I'm not aware of NDT can you explain please? X

Moggie profile image
Moggie in reply to Tanya40

NDT stands for natural desiccated thryoid which is, ususal, made from pigs thyroid and is supposed to be as close as you can get to what your own thryoid produced (your having a conversation with a veggie here who wouldn't dream of taking it herself but many on here do and they do well on it). But like I said before, if I had a set of thyroid results like yours I would go back to my GP and ask for all the vitamins I mentioned to be tested as levo can pool in the blood (hence your high readings) but go nowhere else (hence you still feeling so ill) until certain vitamins "allow" your body to start using your levo properly.

Have a read of this link regarding NDT and see what you think.

thyroid.about.com/od/thyroi...

Do you take your levo, at least, two hours away from any food, drink (especially anything with milk in it) and all other supplements or medication you may be taking. I take my levo last thing at night, just before I turn off my light, with a glass of water as this allows your body to absorb it better overnight with no food or drink to hinder it.

Sorry if I am going over things you already know but I am just trying to work out what is going on with you and trying to make sense of it all.

Moggie x

p.s. sorry about my spelling but I haven't quite got used to this new laptop and keep hitting the wrong keys

Joyia profile image
Joyia in reply to Moggie

Again I echo Moggie's concern as I am experiencing angina symptoms since being on T3, but then again I am 72 years of age which must make a difference to the equation. Although many people feel so much better on T3 it needs to be proceeded with caution, preferably under the guidance of an Endo.

Tanya40 profile image
Tanya40

Thanks Moggie I reall appreciate the reply, I've never really had my blood test explained to me or understand them myself. I will take note of your advice and look at other avenues. Thanks again x

bantam12 profile image
bantam12 in reply to Tanya40

If your TSH is 0.01 and T4 over the range then you are more than likely overmedicated, this can make you feel both Hypo and Hyper. You must consider if you actually need to reduce your high dose of Levo rather than take T3 which as Moggie says should be a last resort. I have been prescribed T3 by my Endo but I have actually decided not to take it due to the potential side effects on the heart.

Joyia profile image
Joyia in reply to bantam12

After hearing so many people praise T3 it is almost a bizarre relief to find I am not the only one experiencing problems since taking it, not that I would wish this on anyone, after so much applause I have stopped taking it too.

helvella profile image
helvellaAdministratorThyroid UK in reply to Joyia

I do not take and have not taken T3.

It is fascinating that people vary so much. Ranging from some people feeling that they cannot take even 5 micrograms. To others needing 200 micrograms a day. It is clear, though, that these differences are very real.

No-one should feel pushed into taking T3. I don't think anyone here would mean to do so - but we all get carried away by our own ideas and experiences! Don't we? :-)

Rod

bantam12 profile image
bantam12 in reply to helvella

There does seem to be a lot of pro NDT and T3 and anti Levo advice on the forum, I have noticed some newly diagnosed people being advised to take T3 without giving the Levo a chance, as we all know it can take a long time to level out when starting meds.

Moggie profile image
Moggie in reply to bantam12

I dont think there is anti or pro advice on this site regarding any of the thyroid meds, just personal experience, well meaning comments, discussions and different view points that need to be weighed up by the poster of the question.

You might assume, by my comments above, that I am anti T3 but you would be wrong. T3, levo and ndt all have their place in the thyroid world but my personal experience, and how my body reacted to T3, leads me to advise caution when people are asking about T3 - especially when you are aware that the poster is relatively new to this thyroid world we live in and the medication that is available. People need the negative stories as well as the successful ones to make an informed decision and I think this site and its members strike a good balance for newcomers and old hands alike when advise is needed.

Moggie x

bantam12 profile image
bantam12 in reply to Moggie

No Moggie I think your post was very good in advising caution, that is my point, there needs to be more caution in advising people on taking T3.

Moggie profile image
Moggie in reply to bantam12

I'm sure Tanya will way up all the pro's and con's of what has been said in this discussion and make the right choice for her and I look forward to her posting her vitamin results in a new question so that we can see IF there is a reason for her levo not working properly or if, in fact, she might be better off trying at T3/T4 combo or ndt.

My point in all this was that my vitamins had not been checked (even though I had asked my GP on numerous occassions) and this was definately the reason behind my levo not working.

Thanks for the chat and have a good nights sleep wont you.

Moggie x

PinkNinja profile image
PinkNinja in reply to Moggie

Does levo work for you now? That would make at least 2 admins well on levo :D

Moggie profile image
Moggie in reply to PinkNinja

Yep - doing just fine on 112.5mcg's now that my iron is getting there (only at forty'ish at the moment) and the more it improves the more I have to reduce my levo as I keep going hyper. Just goes to show how important iron, b12, vitD etc are when taking levo.

Moggie x

PinkNinja profile image
PinkNinja in reply to Moggie

That's great news :)

PinkNinja profile image
PinkNinja in reply to bantam12

I agree people should give levo a chance, however Tanya40 has been on levo for 10 years and increasing the dose hasn't worked. I would, however, advise caution to anyone changing their thyroid meds especially if they are doing so without the input of an expert in the field (i.e. an endo with experience prescribing the medication in question).

I would always advise giving the levo a chance. Even though some experts thing up to 25% don't do well on it, it still means that 75% will. One of our own admins is quite well on levo :)

I also agree that she could be over-replaced as many of the symptoms are similar. If, however, she felt unwell on a lower dose and all her vits and minerals have been checked then maybe levo isn't for her. It certainly didn't work for me. I also recognise that NDT and t3 don't work for everyone. I know some people on here have tried both and gone back to levo but worked with an endo who knew what they were doing, sorted out adrenals and iron etc and became quite well on levo.

I do understand your concern and we do try to provide a balance when people tell someone they should switch. It doesn't seem to happen very often but I have seen such comments a couple of times. Sometimes we do miss some comments though. Oh to be omnipresent :D If you do notice something that is concerning you (i.e. advice to start t3 without giving t4 a chance) please let us know.

Thanks, as always, for your input on this. A very valid point.

Carolyn x

nobodysdriving profile image
nobodysdriving in reply to PinkNinja

yes and no. I believe in 'informed' choice and ideally to let people take what they want to take (or shall I say try what they want to try). I have a few friends who once diagnosed hypo they went straight for NDT and did not want to try levo at all. Is this 'wrong'/'immoral'/'strange'?? maybe a tad strange to some but they firmly believed that's the road which they wanted to take so nothing wrong with it. I personally do not agree that everyone should be started on levo to see if they get on with it, why? why not start on NDT and see if you get on with it? :D I know of many doctors too who would give NDT first a try.... but my post is not against Levo by all means, if that is what 'the patient' wants to try in agreement with their care provider then it's ok :) xx

PinkNinja profile image
PinkNinja in reply to nobodysdriving

I suppose I was being a little naiive assuming doctors won't try NDT first. I certainly didn't realise some doctors prescribe NDT first off! I need to meet one of them, lol :D If that's what the doctor is prescribing first off, then that's fantastic!

I was initially prescribed T3 so I'm certainly not following 'the norm'. I suppose what I was thinking is that if a doctor is only prepared to prescribe levo and the patient agreed to try it, they need to give it longer than a few weeks before jumping to T3 unless they are getting help and support with the transition.

I'm ashamed of myself for thinking like an NHS GP :D I suppose I'm just being cautious.

Perhaps if we were all prescribed NDT in the first place, before TSH reaches 10, more of us would make a successful recovery without shredded adrenals and deficiencies left, right and centre! Of course there will always be those that do best on other regimens.

I like the idea of informed patient choice. Not something that I have come across in recent years in the NHS!

in reply to PinkNinja

As we know, 40 years ago we probably would have been prescribed NDT on symptoms alone, that was the norm since the 1890s I think, before they synthesised & patented one of the hormones,T4 x

tegz profile image
tegz in reply to helvella

Any hormone needs careful management. They are very powerful for their molecular size and aren't predictable as much as drugs as 'we're all different'.

They circulate round our bloodstream, interacting with multiple bodily systems and, once there, impossible to remove in normal course of events till they are used up.

The problem with enthusiastic users isn't that they're wrong to share- but that the medical profession is all too lax in getting onto so many cases.

People need some hope there's a way forward, but self medicating hormones is a risky move, most of the time. Blood testing is a must in all cases,anyway.

Joyia profile image
Joyia in reply to helvella

What a lovely sensible man you are Rod thank you.

Moggie profile image
Moggie in reply to Tanya40

I thought when I saw your picture that you looked like a sensible lady.lol.

I think what you need to do is to read and learn as much as you can and then try and make an informed dicision with what you have found out, that and to keep asking questions on here. Have you ever had any of your vitamins checked like B12, vitd, iron, ferritin and folates - ferritin being very important as this must be at good levels before you even think about taking T3. It must also be at good levels for your body to be able to covert your levo to T3 and then for your body to uptake the T3 into your cells, which is where it really needs to go to stop symptoms such as blurred vision, weight gain etc. My vision has improved a lot since my iron levels have improved and I have had to REDUCE my levo twice since taking iron supplements. Ask your GP to check all the above levels and then post the results on here, with ranges, for people to comment as what the NHS says is exceptable may not be for thyroid patients.

I know how easy it is to fall into the trap of "the little white pill will cure all" syndrome as, like I said, I have done it myself but I just thank god that I did not go it alone but had my GP to advise and check how was geting on.

Hope the above has helped and if you would like any more advise or just an ear to chew (not literally.lol) then you can always PM me.

Moggie x

Heloise profile image
Heloise

Tanya, so you have never had any T3 in your tablets so this would be completely new for your body. The person who said your T4 was over range (is that true) must mean that the 225 levo you take is more T4 than you need. I wonder how much of that is turning into reverse T3 which is of no use. If you do not feel well on 225 mcg. of levo, it may not be the right medication for you. Have you ever tried NDT?

A small dose of T3 (5 or 10) might reveal some answers for you without doing any damage. I mean one time a day for one day or maybe two.

thyroid-rt3.com/backgrou.htm Interesting links about reverse T3.

galathea profile image
galathea

Dr Toft. ( a noted endo who wrote the book, understanding thyroid problems) says that if free t4 is over range and the patient still feels unwell, then a little t3 may be needed. If I was you, I would take half a tablet and see how you feel, itS fast acting, a couple of hours and if it makes you feel rubbish, don't take any more. If it make you feel a bit better, take another half and try taking one tablet a day in a split dose. I have always been rubbish at splitting doses, tbh I simply forget, so the best I have ever managed is a dose at night and one in the morning...... Was always ok on it though..... :).

This t3 stuff, its an active hormone, which may well make you feel better, it's not rocket fuel or speed...... The most likely scenario is that you will take half a tablet and feel nothing...... And wonder what all the fuss was about!

Been there, done that. :)

G xx

in reply to galathea

I am just adding in Tanya's test results from her other Q, for clarification....

Thank you for the reply

I'm just going to write my results as I see them, they don't mean a thing to me! But my doctor did say that they seem fairly normal! Typical as they haven't been for years... Taken 13.09.13

TSH Level - 0.010mIU/L (0.3-3.94)

Free T4 Level - 24.500pmol/L (12.3-20.2)

Vitamin B12 - 618.000ng/L (191-663)

Folate - 16.400ug/L (4.6-18.7)

I take my Levo in the morning at about 5am with a cuppa tea. I eat breakfast at around 7am, I'm not on any particular diet but I do eat healthy.

I have a few glasses of wine at the weekend and I don't smoke. All the symptoms below have been on going for around 10 years with hardly any change if any probably worse over the last 5.

I also take 50mg of Sertealine in the evening I have been on these for 3 weeks for bad PMT symptoms!

I do have a thyroid

In general I feel sluggish, fuzzy head very forget full can slur my words at times, dry skin and hair which doesn't seem to grow!

Blurred vision, never feel full, my face feels heavy, heavy periods, itchy scalp and skin, depression and constipation.

nobodysdriving profile image
nobodysdriving in reply to

these bloods are not bad in themselves. The bloods do not tell you everything, just a tiny tiny 'snapshot'. The bloods alone do not say she's overmedicated/under/or mistreated...if it was that simple then we (as in this support forum) would not exist as every doctor out there would get it right and there'd be no ill thyroid patients :D Tanya needs 'careful' assessment by someone conversant in all aspect of hypothyroidism and its treatment, the best ideally would be to see a private doctor recommended to her by someone who is also a patient of such doctor. Second choice an NHS endo even out of area, even miles and miles away, under the NHS constitution she can choose where to go so long that she can get to the appointment on time without claiming travel expenses, so she can live in Manchester but go and see an endo in London :)

Jackie profile image
Jackie

Hi I have not waded through all the replies as in a rush, so I may duplicate this Please do not take any T3 without a test for TSH, T4 and Free T3, use Blue Horizon on line if ne3cessary, finger prick or venous but do not go through a private hospital as expensive that way. Then if FT3 is low in range and T4 high, Try , very carefully, just taking 10mcg T3 with possibly less T4( depending on the results. T3 is very potent, very good but great potential to harm the heart. Then on these doses re test after 4 weeks and adjust as necessary ie test before any alteration in doses.The Gp should prescribe T3, if shown to need it, if in England as I have it , even from a difficult GP See if she will supervise you taking it.

Best wishes,

Jackie

lynnimp profile image
lynnimp

Hi Tanya:

I was first diagnosed in the US - and was put on a regime of T3 only (you can get it sustained release there) and gradually added T4 as well. In the states, any thyroid med is taken/increased in increments of 5mcg each time - for a 6 week period. Moving back to the UK a well-meaning GP convinced me to try T4 - a disaster! I became hypo and hyper on alternating days. I now consult my doctor from the US and get my T3 sent over - and have lowered the T4. . If you, like me, have a reverse T3 issue, i.e., you don't adequately convert T4 to T3 - then see if your GP might prescribe 'on a named patient basis' Armour or Erfa Thryroid - which contains both. I've been offered that by my GP - but am stable on my current regime. Now, WHEN you take it is very individual. For example, I take 20mcg T3 all in the morning (after years of a split dose morning and afternoon - I found this the best for me) and alternate 75 and 100mcg T4 each AM at the same time. The T3 tablets they have here are tricky to split...but maybe try to get as close as you can to 5mcg and start with that. (I've had them and would just bite off a small chunk). Good luck!

Lynn

fiona profile image
fiona

Yes you can get T3 prescribed by the GP but it's not easy. For me that involved a very long story of changing GP going to a private consultant. She prescribes knowing there's a consultant you see.

I found this one tablet you are talking about, a starting point, not an ending point. A lot of trial and error which took a couple of years or more. I now take 30mcg am 30mcg lunch 20mcg tea. It's basically dividing the dose to cover different times of the day. Yes I'm using a tablet cutter to cut my 20mcg tablets because it was too strong to take two together.

When I was in a similar situation to yourself, I had the T3 20mcg in the morning. Then I found energy crashes later on, as if it had run out.

I found I soon know when I was getting there with the dose. Basically it was reduced, I was more ill. Plus once it was getting along the right lines, I could tell I had a quick improvement.

I've had T3 at bedtime, but that was how I came to split the tablets, due to experiment with the dose timings, not just the overall dose in a day.

So believe me all this trial and error,'as advised, it just done myself took ages, and was why rollercoaster.

Jessiepup profile image
Jessiepup

If you need T3 then then something is stopping the Levothyroxine working.

I had a 4 years spell on T3 to get me right, then I cut Gluten out of my diet and on day 6 I was through the roof because the T4 started working on top of the T3 I was taking the palpitations where so severe I thought I was dying.

Been Gluten free for 5 years now and not needed the T3 since.

Who would thing a grain of wheat would have such an effect.

Just a thought for any of you who have considered dietary effects.

Moggie profile image
Moggie in reply to Jessiepup

Yes I had thought of her gut being an issue but as you will know, being gluten free yourself, that it is a very complicated issue. I went gluten free for a few months a while ago and boy did I notice difference and I do firmly believe that the gut, wheat and autoimmune illness are all closely connected but I really did not want to confuse the issue to much. If Tanya was found to be low in iron, b12 ect then it is a fairly obvious link to the fact that she my have gut issues and I would then have adviced her to look into it.

Thank you for your valuable input and it nice to see that someone else shares the wheat/gluten/gut significance when things are not going well with thyroid medcation.

Moggie x

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