Thyroid UK

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Hi! Im 46 years okd and have had hypothyroidism since giving birth to my son almost 20 years ago.

I've been lucky and felt well on levothyroxine.

The last couple of years my weight has becone an issue. I gain really easiky and fund it very hard to lose. I suffer aches and pains. Tiredness, dry skin.

My GP will only test my TSH which is currently at 1.1 though it normally sits at around 0.5. She feels this is still on the low side and would he more interested in decreasing my daily dose if 125mcg then getting it back to being a little lower.

Is thus slight raise in TSH going to cause my symptoms? Or is there something else I should be looking at?

I also take vitamin D on prescription those levels are within the norms. My iron levels are also normal.

My GP"s only help was the offer to discuss diet with a nurse. I also suffer with sleep apnia and so losing weight would hopefully help with this too.

I look forward to hearing people's thoughts.

17 Replies

Your doctor is wrong. But I think you kind of suspect that.

Is there any other doctor in the practice you can see - one who is willing to take their head out of their arse and do the right tests to see whether you are on enough thyroid hormone replacement?

Ideally, you need FT4 and FT3 testing.


Sleep apnea is linked to Hashimoto’s

Essential to get full thyroid tests and vitamin D, folate, B12 and ferritin

TSH should be around one and FT4 towards top of range FT3 at least half way in range

Blood tests should be done as early as possible in morning and fasting and don’t take any Levo in 24 hours prior to test. This gives highest TSH results.

Also look at gluten free diet. Very many find it helps

Read as many posts on here as possible


Your doctor knows nothing about thyroid. A euthyroid TSH is around one, but, once you are on thyroid hormone replacement, the TSH is irrelevant - doesn't matter how low it goes - and she should not be dosing you by the TSH. That is the best way to keep the patient sick.

Just because your TSH is perfect - which one could say yours is - it doesn't mean that you have enough T3 to keep you well - and it's low T3 that causes symptoms. TSH itself doesn't make you feel anything, it just stimulates the thyroid. But she won't have any idea what your T3 is like by just testing the TSH - although I'm sure she thinks she does! Time to either challenge her, or find a new doctor.


I once had enormous fun challenging an “endocrinologist” about the relevance of suppressed TSH in the presence of in-range FT3 levels (as he was intent on lowering my other half’s liothyronine dose because of her suppressed TSH). In the end, the best he could do was say, “Oh it doesn’t work like that.”

To which I replied innocently, “Really, tell me how it works then? TSH is a pituitary hormone, isn’t it?”

He refused. Instead, he told me he hadn’t got time to tell me...

But still, my other half *didn’t* have her liothyronine dose lowered. :)

Scary, isn’t it, that so many of us here can explain how it works, when these “specialists” can’t...


Yes, it certainly is!


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:

Prof Toft - article just published now saying T3 is likely essential for many, or they have to have high FT4 and suppressed TSH

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Thankyou for this, Ill give it a go!


Try NDT and self medicate

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sorry whats NDT?


Natural Dessicated Thyroid lots of people take it especially when they do not convert well with Levo.

It is made from pigs thyroid or bovine i.e. Cow.

Before Levo was brought onto the market by the big Pharma everybody used NDT but it never made any money for the giant Pharma so that now most doctors don't prescribe it.

It's the only thing that made me better and it's very low in cost too.

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I am 73 and over the last twenty years I have put on about 6 stone in weight, all due I am sure to Thyroid problems,. I take 100mcg of Levothyroxine T4 a day and everytime I have a blood test my Doc says its normal - in Europe and America it would not be normal!. I don't agree with Doc and have been fighting for the last ten years for her to do something but she just shrugs her shoulders. I asked to see an Endocrynologist and got an appointment and he turned out to be a Dietition, I was very annoyed. I have every symptom of Thyroid, tiredness,hair falling out and no eyebrows, lethargy and excessive weight. I could go on. My daughters tell me that I don't eat a lot which I agree. I have read that if you go on T3 you can loose weight, my doctor wont prescribe it. I read on here of one lady who bought T3 on the internet and lost five stone. So I think this is my next action.


Hi Nutty9toes (great user name!)

It’s very frustrating, isn’t it?

Before you start spending money on T3 though, I’d recommend asking your doctor to provide the results of your most recent thyroid blood test. I think (from what you say) that you’re in the UK? If so, you have a right to see your thyroid blood test results - the doctor cannot refuse to let you see them (though there may be a small fee to print them off - if there is, ask to see them on the screen so you can copy them down in a notebook, and write down both the result and the laboratory reference range for the result (as these can vary from lab to lab).

When you have them, by all means start a new post here and ask for comment on the results. You may not need T3, you may just need a raise in levothyroxine. T3 is strong stuff, so it’s not a good idea to just start taking it without knowing what you’re doing. You can end up feeling very poorly that way. Sad to say, it isn’t a magical solution to weight loss but if needed (and you won’t know if you need it without looking very very carefully at blood test results), it *may* help. That’s why it’s best to get a doctor on side but many of us here know how difficult that can be...

You may find that your doctor has only tested TSH. If the doctor refuses to test FT4 and FT3, you can have these tested privately - but one step at a time... :)

Read lots around the subject before jumping in.

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I have had all the Thyroid tests and others too D3, B12, Liver, Cholesterol - I could go on and I always get a print off of the test results. T3 is always borderline but Doc says its OK - it wouldn't be in Europe or USA because their normal level is different to uk ! more than likely NHS doesnt want to spend the money on T3 as its expensive..

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You must test your vitamin levels first

Essential to have good levels of vitamin D, folate, ferritin and B12

Not just in range but at top end usually

If not been tested ask GP or do privately

Always get printed copies of actual results and ranges on all tests

Do you have high thyroid antibodies? Been tested? If not get this done too

If you have high antibodies this is Hashimoto's also called autoimmune thyroid disease

If you have Hashimoto's Highly likely to need to at least try strictly gluten free diet for 6 months. Most find it helps or is essential

Levo dose must be high enough to bring TSH down to around one and FT4 towards top of range and FT3 at least half way in range

If after all these are correct, FT3 still remains low then, and only then are you ready to consider adding small dose of T3

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

See if you can get full thyroid and vitamin testing from GP. Unlikely to get FT3

Private tests are available - £28 postal kit

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


As I have already said, I have had every blood test you can have, Thyroid T3 and T4 always normal by NHS UK, would not be in USA or Europe! I am on B12 injections every three months, also take D3 - have done for years, I also take B12 tablets starting between injections as that's when I start to feel lethargic (injections once every 3 months).

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So what are your FT4 and FT3 results (with ranges)?

Let’s see if a raise in levothyroxine would help...


Thanks to everyone who replied. Lots if info and advice. I'll be trying my Dr again to test all the things recommended here. 😊


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