Log in
Thyroid UK
91,912 members106,178 posts

Help!!!

Hi Everyone!

I'm after some advice regarding T3.I've had an Underactive Thyroid for the last 13 years but only diagnosed 6 years ago. Since then it has been a constant battle of being advised to increase/decrease my meds every few months- it never seems to stabilise. That being said, I've not had my T3 etc tested, only ever TSH as the Doctors at my surgery and the Endo I've seen refuse point blank to accept that T3 has anything to do with anything!Just before Christmas I (probably stupidly, but incredibly frustrated by now) decided to stop my Levo and I felt better than I had in years-no aches or pains, loads more energy, felt less hungry and lost weight. Unfortunately I then got a cold, which then turned out to be whooping cough, the Doctor insisted on testing my TSH which was due at the same time and it was through the roof! Needless to say I realise I obviously need something!However, I don't feel I'm getting better on Levo and get more sympoms and don't feel 'with it'. I've contemplated going private to try NDT but the potential cost scares me!After researching loads, people seem to suggest adding T3 - has anyone found this effective and also is Uni-Pharm (think that's what it's called) still the best place for it?

Also, going to order up some medichecks blood tests of my own to check EVERYTHING- so fed up of Doctors!

Any advice would be much appreciated :-)

20 Replies
oldestnewest

Sounds like you have hashimotoes.

Looking into diet can help this.

When you stopped t4 your tsh will go higher. This has the effect of improving your t4 to t3 conversion. So you will have more t3 in the cells and so feel better.

Using some t3 is certainly the better option as it is cheap to get on the net.

What you will need to discover for yourself and this will mean trial and error and not listening to the go, is to trial different ratios of t4/t3 to see what ratio you work better on.

It is nice to use a base level of t4 which gives you some basic support and then use the t3 to fine tune everything.

A lower t4 dose is around 50.

You may then start using t3 in small dose and build up. The best starting dose is 1/8th or 3mcg.

What were you on t4 wise?

1 like
Reply

Hi, thanks for your reply.

I'm currently on 175mcg. I was on 200mcg but advised by the Endo that my blood test (TSH) showed this was too much even though I still had the same symptoms I've had from the very beginning.

The only T3 I have found online that's easily accessible and seems to be from a reliable source is from Uni-Pharm and they come in 25mcg tablets.

I have just order a Medichecks kit which will test my T3 so once I get the results back hopefully I should get some answers and maybe (armed with printouts from this site) be able to go and argue my case a little better with the Doctor.

Reply

I doubt the source of Unipharma T3 is reliable. It used to be easy to get from Greece but not now, pharmacies there now usually require sight of a prescription from the local people (Marz lives in Crete and uses T3 and she has to show her prescription and can only have one packet at a time). PM me your source and I will tell you if the supplier is one who has been ripping people off by accepting their orders, taking their money and not supplying the goods, or months later they may supply a substitute which members don't seem to do well on.

Reply

Hi SeasideSusie , I've PM'd you :-)

Reply

:)

Reply

I get mine from a supplier whose details were messaged to me by someone on here. She is a retired doctor, whose family own a pharmacy in Greece. I pay £27 for 30 x25mcg tablets of T3 Uni-pharma. She lives both here in the UK and in Greece. I can PM you her details if you like.

I've no idea if it's possible to get T3 any cheaper. I'd be really interested to know if anyone has a cheaper supplier.

Reply

Hi ShinyB - that's fab, if you could please it would be much appreciated :-)

1 like
Reply

It is important to find out where the Ft4 is as well as Ft3. IF you can get the Ft4 to be in the higher teens (range is usually 10-22 in the UK) then you will have a good level of T4. The next stage is to see how the addition of T3 goes and upping that to feel better.

You don't want to be dropping the T4 at the same time because you have no idea what is doing what. e.g., did the lower T4 help or was it the higher T3 ? Then you start to feel off again and you really have no idea what caused it.

So make one change at a time. This is why i think it is important to find that happy medium T4 level and then adjust with the T3.

You will also be messing about with diet and vitamins and minerals so it can get confusing. so it is good if you can develop a simple thyroid system to follow.

1 like
Reply

I'm literally getting the whole lot tested and will aim to get my T4 accurate first as you've suggested then depending on what the T3 results are adjust accordingly.

Reply

Hi marsaday , & sorry to gatecrash in on Alicia1984 's post,

I didn't know that about less T4 making TSH go higher and hence improving T4 to T3 conversion. Have you got a link about it that I could read?

Also, when you say cheap to get T3, what sort of price would that be? I'm currently paying £27 for a supply of 30 tablets of 25mcg each.

Thanks :)

1 like
Reply

I think it is £20 for 100 25mcg.

I think part of the role of TSH is to aid T4 to T3 conversion, so if you suppress the TSH with T4 or T3 or both you can lower conversion. Have a google about it.

This is why people can have a TSH of 100 and feel fine. The body is super converting the small amount of T4 they have. Longer term this process is not going to keep up. Doctors will step in the provide thyroid meds and the patient will often feel worse on it because they will now have less T3 in the cells. Hence we need to look at using some T3 with the T4.

3 likes
Reply

Thank you, that is quite a bit cheaper! Would you mind messaging me where you get yours from?

I'm certainly feeling a difference since starting on some T3 about ten days ago. Early days, but a definite improvement, yay!

1 like
Reply

Can you message me where you get them marsaday as well please :-)

Reply

So really, theoretically, you're TSH is completely irrelevant. I stopped taking my Levo in November and felt better than I had in years (until I caught whooping cough). When my TSH was tested is came back at 26 yet I had no symptoms compared to when I was first diagnosed with a TSH of 10

Reply

You are a good example of the mystery with thyroid illness. The docs don’t really know what is going on it seems.

You feel fine as you are at the moment but if you lower the tsh you become unwell.

Your body is using its back up system very well. Your ft4 maybe low but you are converting very well and feel fine.

Then we can get people with tsh,s of 3 and feel terrible.

Longer term you may need thyroid supplementation but at the moment it seems your body is adapting well

Reply

No , that's the problem I don't feel well now - well not how I used to feel anyway, however I did when I stopped the Levo. Now they've insisted I stay on it I have aches and pain, blurred vision and just don't feel 'with it'.

I've feel pretty rubbish regardless of my TSH is been everything from 0.2 to 26 and allsorts in between- I'm just able to get out of bed and go to work on Levo (but not much else) unlike when I was first diagnosed. Yet at TSH of 26 recently I felt great.

I was always convinced that my issue was more stress/adrenal related rather than thyroid which could possibly explain it as I now have a completely different lifestyle to what I had back then but again, the Doctors won't entertain it and just keep banging on about my TSH lol.

It seems once they have a potential culprit ie high TSH they blame EVERYTHING on that. They did the same for years prior to my diagnosis blaming everything on IBS as it had been merely suggested once that that was an issue.

Reply

For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

It's extremely common to have very low vitamin levels. Essential to test before we start T3 and supplement to improve FIRST

If you have high thyroid antibodies this is Hashimoto's. Sounds like you do with levels varying

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Private tests are available

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Link about antibodies

thyroiduk.org.uk/tuk/about_...

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ask GP for coeliac blood test first

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

Getting Levo dose high enough, vitamins optimal and likely to help or be essential strictly gluten free.

Then, if FT3 remains low, like many with Hashimoto's you may need the addition of small dose of T3

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

please email Dionne:
tukadmin@thyroiduk.org

Prof Toft - article just published now saying T3 is likely essential for many

rcpe.ac.uk/sites/default/fi...

Reply

Wow! Thanks for all the info :-)

I've ordered the Medichecks Thyroid Plus Ultra Vitamin test-hopefully it should be here tomorrow. I'm a little excited tbh as never had anything relevant tested other than TSH and Coeliac (which I'm not, but the first Endo suggested a trial of being Gluten Free) so hopefully it might give me some answers, or at least point me in the right direction. I wouldn't mind doing that if I knew it was likely the issue but I'm not going to lie, it seems like a bit of a ball ache if it doesn't make any difference. I don't really eat much bread or pasta as I discovered years ago they irritate my IBS, but it's the little things like gravy, or soup :-(

Reply

I know the feeling! When I got the results of mine, I actually cried buckets to see something in black and white that confirmed what the 'problem' was. All these years of so many diagnoses and problems, and it could all be down to low T3!

Reply

I would get your FT3 checked first, as a precaution, as you say.

I have not felt well on an increased Levothyroxine dose. I had a full profile done and my FT3 was below range, and my T4 low in range. I increased Levo gradually with the aim of having T4 high in range, so that more would be converted to T3.

I recently added a very small amount of T3 -about ten days ago - and in the last few days I have felt a bit more energy, a bit less brain fog, and an improved mood.

I'm thinking of reducing my levo dose, in fact I've just posted about it.

I'm going to follow your post as I'm interested in the replies you get too!

Best of luck to you :)

Reply

You may also like...