Considering Reverting Back To Levo From Thyroid... - Thyroid UK

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Considering Reverting Back To Levo From Thyroid S, but Purchasing T3 To Supplement. Does T3 and T4 Combo help with weight loss and fatigue?

MapleMoose
MapleMoose

Does anyone who takes Levo and T3 combo have had successful weight loss and less fatigue?

I have recently started on Thyroid S from Thailand but been feeling quite unwell on it and so thinking the ingredients perhaps don't suit me. Levothyroxine alone has increasingly caused weight gain and fatigue. I have been taking it for years but starting to feel worse on it. I have read that adding T3 will help with the above symptoms. If it works, I'd rather take levo under GP supervision and get my own T3 as my GP won't consider it rather than buying and trying all kinds of unregulated NDT.

My last test results were:

T3: 4.28 ( normal range 3.1-6.8)

T4: 18 pmol/L (normal range 10-25)

TSH: 0.10 mU/L ( 0.55-4.78)

Are these results optimum, I'm not sure how to intepret the TSH result?

Any advice on my concerns would be gratefully received, thanks!

38 Replies
oldestnewest

Have you considered Thyro gold. ? I could not cope with Amour but am doing well on Thyrogold

MapleMoose
MapleMoose in reply to Jillkh

Can you get Thyro gold online and without a prescription? Is it very expensive? I paid $24 for 100 tabs of Thyroid S from Thailand, other sources and NDT were extremely expensive. I am on a tight budget at the mo so can not splash out endlessly. Also, is it gluten free?

Jillkh
Jillkh in reply to MapleMoose

I buy my Thyro gold online. I think I have to PM you the site. It works out about £20 a month for me. It does feel unfair to have to pay for my own medication as the GP won't prescribe, however since it's my only option I need to do it to get my health on track

MapleMoose
MapleMoose in reply to Jillkh

Thank you would appreciate the thyrogold site. Loosing a stone sounds amazing desperate for that. Had to give up on thyroid s due to allergic type reactions and needing piriton to cope with it. Felt awful, started back on my levo today but upped my dose.

Hidden
Hidden in reply to Jillkh

Jillkh,

Are you still on Thyrogold and doing well on it?

Jillkh
Jillkh in reply to Hidden

Hi Anna, yes been on it over a year now. I am doing ok taking it. My weight has stabilised after initially losing about a stone when I started it. I did struggle with breathlessness very badly, but I supplemented with a small amount of T3 and that has stopped that.

SeasideSusie
SeasideSusieAdministrator

MapleMoose What thyroid meds were you taking when that test was done? If NDT then that tends to lower TSH so don't worry about that. Your FT3 is nowhere near optimal so you are actually under medicated and maybe that's why you feel unwell.

I take a Levo and T3 combination (100 and 31.25 currently) and I have put weight on despite a good level of FT3. I feel better with this combination rather than Levo alone but I have also optimised my low nutrient levels and am supporting my adrenals and addressing extremely low sex hormones too. These are all linked, it's not all down to thyroid.

I was on 100mcg of Levo only at the time of my test. Are all my results T4, T3 and TSH not optimum? Would just taking T3 be better? I purchased Thyroid S because it was affordable and didn't need a prescription.

SeasideSusie
SeasideSusieAdministrator in reply to MapleMoose

MapleMoose To be on 100mcg Levo with these results

T3: 4.28 ( normal range 3.1-6.8)

T4: 18 pmol/L (normal range 10-25)

TSH: 0.10 mU/L ( 0.55-4.78)

then you are undermedicated.

Your FT4 is 53% through it's range and FT3 is 31% through it's range. They should be in balance in the upper part of their ranges.

An increase in Levo would increase your FT4 and this would also increase your FT3 if conversion is good enough.

Good conversion takes place when FT4: FT3 ratio is 4:1 or less. Yours is 4.2 : 1 so not far off. To help conversion, optimal levels of vitamins and minerals are necessary, have you had the following tested

Vit D

B12

Folate

Ferritin

Also supplementing with selenium helps conversion, and a good level of zinc.

Before contemplating T3, or even trying a different NDT, I would try an increase in Levo along with optimising all vitamins and minerals.

You don't have to worry about a low TSH when on thyroid meds. From ThyroidUK's main website under Treatment Options:

thyroiduk.org/tuk/about_the...

"According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above."

Dr Anthony Toft, leading endocrinologist and past president of the British Thyroid Association, wrote that book and you can get it from your local pharmacy or Amazon for about £4.95.

Dr Toft also 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 article by emailing louise.roberts@thyroiduk.org.uk

Thank you for all that info. A pretty complex subject

SeasideSusie: I have started on high dose B12, B complex vits, high dose D3, Zinc with C and Copper, Selenium with A, C and E and an Adrenal Gland support supplement. I was tested for iron deficiency some time ago and that was fine.

If I am under medicated on 100mcg of Levo, couldn't I stick to the 100mcg Levo and take the 60 (1 grain of NDT equiv to 75 mcg T4) to supplement it to give me 175 mcg of T4 with the added T3? Does anyone do this?

SeasideSusie
SeasideSusieAdministrator in reply to MapleMoose

Twinmommy - if it was me , I would first of all test and see if my vitamins and minerals are up to optimal levels (hopefully you haven't started supplementing without testing), which are

Vit D - 100-150nmol/L or 40-60ng/ml

B12 - very top of range, even 900-1000

Folate - at least half way through it's range

Ferritin - half way through it's range

These are so important for thyroid hormone to work properly.

I would keep it simple for now and try the increase in Levo to raise FT4 and see how much FT3 increases. If there's not much improvement in conversion once your TSH is 1 or below and FT4 up in the upper part of the range, then consider adding T3 or swapping to NDT

Thanks! I will have to increase the Levo myself by taking extra because my GP won't consider prescribing more or give me T3. Perhaps I should go up to 150 mcg of Levo and then get a blood test done at the Drs. to see what it is. He'll probably flip out as he did when I told him I chewed the end of a 100 mcg tab as I was feeling more hypo. He says I'm playing with fire, being irresponsible and not respecting the knowledge of the medical profession blah blah! :/

Twinmommy,

Most people taking NDT or Levothyroxine plus T3 aim for FT3 5.0 - 6.8. You may feel unwell because you are under medicated or it may be the brand you are taking. Some people need to try several different NDT brands to find one which suits.

MapleMoose
MapleMoose in reply to Clutter

I chose Thyroid S due to affordability and no need for a precription. I can't really afford buying lots of NDT for a trial basis. I took one and half grains today but feel completely wacked out and sluggish. Nervous to go higher! I know I bang on about weight loss, but I am absolutely desperate to loose it and don't want to risk more weight gain further.

Clutter
Clutter in reply to MapleMoose

Twinmommy,

Increasing dose today won't have wacked you out and made you sluggish. How much Levothyroxine were you taking before you switched to NDT?

MapleMoose
MapleMoose in reply to Clutter

100-112mcg of levo

Clutter
Clutter in reply to MapleMoose

Twinmommy,

1 grain Thyroid-S is equivalent to 65mcg Levothyroxine so you were undermedicated. Try 1.5 grains for a couple of weeks and then increase to 1.75 grains.

NatChap
NatChap in reply to MapleMoose

How long have you been taking it for?

MapleMoose
MapleMoose in reply to NatChap

Just over a week for the Thyroid S and Levo for 12 years. I did a direct switch over from one to the other.

NatChap
NatChap in reply to MapleMoose

I honestly don't think a week is long enough to know whether it will work for you. i would have started on 1 grain and then increased by half every 2 weeks (or 1/4 every week). I was on 125mcg levo when I switched because I still felt unwell. I'm up to 4 grains now and it's taken a year to get to this point! Obviously if when you raise you find symptoms worsening then it may be that it doesn't agree with you.

MapleMoose
MapleMoose in reply to NatChap

Thanks for your advice, very helpful.

Hi Tommy. I've just switched to Thyroid S as well. I was on125 MCG of Levo it gave me terrible leg pains and Achilles issues. I went the whole hog on Thyroid S, taking 2 tablets straight away. I felt really strange. Dizziness, totally spaced out and tired. This was because my body wasn't used to the T3 and reacted. I've taken advice and split the dose, half Levo 50mcg in the morning and 1 grain of Thyroid S early afternoon. I'm now ready to go the whole hog, but 1 grain in the morning, and 1 in the afternoon. It takes out bodies time to adjust. Just be patient with it and let your body get used to the sudden hit of T3 hormone.

MapleMoose
MapleMoose in reply to Print1972

I've had to give up today and go on a upped dose of levo. Thyroid s was giving me allergic type reations so needing piriton to cope with it, worrying tingling and numbness in wrists and hands and so tired I could hardly function. My husband said I look positively ill on it, so that was a waste of money. I looked at the book on amazon about getting better with T3 alone, may get that book and see if it's worth trying that. Feeling pretty down about the whole thing, had high hopes for NDT, but not if I feel 10x worse than on Levo.

I'm taking Thyroid S and was told that my TSH would be suppressed or even zero, FT4 could fall to halfway in the range but FT3 should be high. You are under medicated! So try raising a quarter and stay on it till retest or if. Ash is tight try another quarter and see how you feel, that night show signs of over medicating so drop back again and retest when stable on that. You may have to alternate if that's the case.

Just deleted my comments re price! I had misread your post so it was irrelevant!

You really shouldn't be self medicating and certainly not like one of your respondees switching from T4 to T3 abruptly. Combination therapy does work. I'm on 75 mcg T4 morning and 25 mcg T3 split into two and taken morning and afternoon (at least 8 hour gap) with at least half an hour before I eat. If you can find an endocrinologist who is a member of the British Thyroid Association and get an appointment they may be more sympathetic. None of us should be in this position but we are, it's shite but this site cannot give medical advice. I spent years thinking it was all thyroid then discovered I had a brain tumour.

humanbean
humanbean in reply to levelslass

You'll find that lots of us on this forum self-medicate, and although it can take a lot of experimentation and trial and error, most of us think it is a worthwhile thing to do. We care how we feel. There are a huge number of doctors who don't and who only want to class us as mentally ill and prescribe anti-depressants, when the problem is actually incorrect levels of nutrients, thyroid hormones and adrenal hormones.

Regarding switching from T4 to T3 abruptly, I haven't read the whole thread so don't know the circumstances.

I wonder how you feel about people who are hypothyroid and who have been so for years, being taken off all thyroid hormone for 3 months by their doctors because their TSH is 0.3 when the bottom of the range is 0.4, or their prescription being reduced from 175 mcg T4 down to 25 mcg because of low TSH? And what about those of us who are accused of dishonesty because the doctor has no knowledge of autoimmune hypothyroidism and doesn't understand that a low TSH isn't caused by the patient taking more meds than they are supposed to, but is the result of an autoimmune flare up killing off the thyroid.

We get told about such shenanigans often.

I'm glad you have such faith in the medical profession. And if they make you feel well, then I'm delighted for you. But this doesn't give you the right to tell someone off for self-medicating when they felt crap on standard medical care.

MapleMoose
MapleMoose in reply to humanbean

I agree, my GP calls me one of the many worried well and if folk on this site think I'm undermedicated and my GP says my results are the so called satisfactory, then I'm stumped. I've tried registering with a different GP practice, but where I live it's a postcode lottery and the nearest endo. whether they are thyroid sympathetic or not is over a 100 miles away and I can't afford to go private and my GP wouldn't refer anyway. I am at my wits end trying to get things right. I've just come across the book Getting Well With T3 (alone) and may get that to see if I would be a good candidate for that Rx regime. I would have to do it myself because my GP won't entertain anything other than the cheap brand of Levo. I understand where the previous respondant is coming from but but not all of us are that fortunate with medical help.

humanbean
humanbean in reply to MapleMoose

Look into Paul Robinson's books and protocol. He did have a Facebook group as well, but I'm not sure if he still runs it. He doesn't seem to be so active online as he was a few years ago.

recoveringwitht3.com/

facebook.com/recoveringwitht3?

MapleMoose
MapleMoose in reply to humanbean

Thanks! Will do.

humanbean
humanbean in reply to MapleMoose

He tends to be good for people who have low cortisol and poor adrenal function.

If you aren't sure about your adrenal function and want to work out if you have issues, then you could try following this - it's a bit of hassle but it's completely free :

drrind.com/therapies/metabo...

MapleMoose
MapleMoose in reply to humanbean

Thanks! All seems rather complex but heh ho may give it a go:)

levelslass
levelslass in reply to humanbean

You're writing to the woman who was put on HRT in her 30's because the consultant didn't interpret my blood test with high MCV as a marker for Hashimoto's so please don't mistake concern for telling off. I have been told my GP will give me a private script for T3 but I can't have it on NHS. It makes me angry but I'm fortunate. In Greece for example women are routinely given T4 and T3. If we bypass the medical profession nothing will change. I just worry that by self-medicating at the wrong dose we may be harming ourselves.

Yes, I am very concerned about self medicating and getting it wrong, doing further damage, but don't know what else to do. Since going back on T4 Levo for two days, I feel crap, I don't whether venturing to Thyroid S and reverting back has messed me up. Has going on T3 helped you alot?

P.s: I don't think folk were thinking you giving a telling off, everyone should be free to give their thoughts and opinions and we make our own personal decisions, I appreciated your input. I am needing people who understand to help with unlocking this complex disorder, for sure no one understands properly in my world.

Yes going onto T4 only is not sensible. My understanding from the consultant endocrinologist I saw in 2008 is that T4 Levothyroxine is a long term thyroid med which can take up to 2/3 months to really take effect. Suggest you read British Thyroid Association Executive Committee December 2016 british-thyroid-association...

which sets out very clearly the dangers of taking patients off T3 or the equivalent Thyroid S. He dropped my T4 dose to compensate for the T3 he prescribed.

Yes T3 has saved me. I take Uni-Pharma T3 25 mcg split with a tablet splitter, as a morning and afternoon dose, under the tongue in conjunction with T4 75 mcg in the morning 30 minutes before food.y. I don't know where you are based but I am in the UK and I am seeing an endo consultant in August and will argue my case for Independent Patient Funding, suggested by my PAL advisor at the local Clinical Commissioning Group.

If Mercury Pharma and other companies like them were not charging the NHS stupid money we wouldn't be in this position. So let's start a petition and get our MPs to sort this out. Someone has signed a contract with these companies and there is a legal loophole which needs to be closed. I have complained to the Competition and Markets Authority but we need to do more. Have heard from Jerome Burne - health journalist that someone called Ursula Power is starting a new campaigning organisation ITT - Improving Thyroid Treatment ujpower62@gmail.com for details. I would be very interested to see the details of the contract the NHS signed if anyone knows where to look. My GP said it isn't just thyroid meds but also other meds.

I am in the UK but now in Scotland. I was first diagnosed when I moved to the States back in 2004 and was on Synthroid then and Levothyroxine here. My U.S GP was much more go ahead and would tweek doses to how I said I felt and not just based on blood tests, even though I had tests done every 3 months. Here, it's like flogging a dead horse so the saying goes and I can barely get the 12 month test done which they only agree to the TSH & T4. I had to argue to see my results. I paid for a private T3 test but can't afford to keep shelling out money for this every 5 minutes. I only tried Thyroid S for a week last week but cannot tolerate it and felt awful. I don't know how pure it was which is the big question with NDT due to being unregulated. For all we know they could be placebos. I've read so many things which treatments are best and not, and I wish I could just have medical help and advice rather than trying to dicypher it out myself. Where I live there are no options for 2nd opinions and medical choice, it's like being in the dark ages here. I dread going to the GP for anything because in my perception they think I'm a hypochondriac and probably over anxious. Prior to hypothyroidism, I was fit, well and very stable, so I'm not mentally ill or lazy but it seems that thyroid sufferers are labelled as so.

How do you know how much T3 to take? I am prescribed 100mcg Levo but suggested by this forum to be undermedicated. I can't have an increase due to my docs opinion on my TSH T4 results. I am prepared to buy T3 online but have no idea how much to take. If I can do this with added T3 and get good results, perhaps I can prove to my GP I need it but they won't entertain it now and was told if I went on NDT I wouldn't be seen for thyroid issues with them anymore (basically saying be struck off pt list ).

Your GP cannot refuse to do another blood test for you and give you copy of your results. Suggest you speak to your local NHS PAL Patient Advice and Liaison officer and get some support.

I've just reread your blood results. Mine in Sept 2016 (have had it done since then but not to hand) were:

You T3 4.28 range 3.1-6.8 Me 4.9 range 3.8 - 6.00

You T4 18 10 - 25 Me 9.3 7.9-20.00

You TSH 0.10 0.55- 4.78 Me 0.57 0.34- 5.60

So you can see your T3 was not dissimilar and we were both mid-range.

T4 your reading is much higher than mine.

TSH your reading is slightly lower.

So it's a puzzle why you're feeling so lousy. But certainly wouldn't swop T3 for T4 as you have done. Read the information from British Thyroid Association as mentioned above. That will explain exactly how you should come off Th S or T3 SLOWLY if at all. But my point was previously it may not just be thyroid. Go back to your GP and ask them to do blood test again.

Jillkh
Jillkh in reply to levelslass

I don't particularly want to be self-medicating and I definitely do not want to have to be paying the amount I am to self-Medicate. Unfortunately I was left with no choice. After 12 years on Levo. Getting sicker and sicker, being told by various GPS that my symptoms were due to :stress, that I was either, depressed, anxious or over worked. Being told my bloods were fine and it was all in my mind. Final straw for me, was when I eventually got the consultant appointment I had fought really hard for and was told, that my symptoms was down to the menopause, he told me to stop worrying as my hair fell out because my bloods were fine!! ( I was asked to leave his office when I argued that nobody has a 12 year menopause!!)

So I took the really scary decision to self medicate. I sought advice on here and took control back over my health.

I would very much like to have the expertise of a doctor to oversee my medication, however I do not have that luxury and I could no longer risk my health . So yes I have to self medicate. I feel the best I have in years

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