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Thyroid UK
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Tsh

My GP will only test my tsh,when I asked him to test t3 as people

With fibromyalgia don’t convert very well,and I wanted to know

If my conversion was ok.He told me that if it wasn’t it would

Show in my tsh.

Is the correct?

I had total thyroidectomy 2 years ago and I am on 125 mcg

Of levothyroxine

39 Replies
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I don't think it is wholly correct that low FT3 will be apparent in TSH result if you have thyroid disease. THe problem is that if you've had a total thyroidectomy then there is a disconnect between the thyroid hormones and they don't function as they would in a healthy person no matter how well replaced a person is on levothyroxine. The adaptation the body makes is very individual and TSH alone would not reveal this, as I understand it.

A paper published recently by a scientist connected with this forum demonstrates this disconnection.

ncbi.nlm.nih.gov/pubmed/293...

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Balerit,

No, your GP is wrong. I had very low TSH but FT3 was below range too.

If GP will only test TSH you can order your own thyroid test from Blue Horizon or Medichecks via thyroiduk.org.uk/tuk/testin... Medichecks offer #ThyroidThursday discounts.

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Hi Clutter

Unfortunately many GPs don't accept the "evidence" of private blood tests... I did ask my GP to request testing for FT4 and FT3 as well as antibodies. She told me the lab might not do the tests. Asked her to request them anyway and see what would happen. They did FT4 and FT3 as well as only one of the antibodies. I would like to do private tests but if GP refuses to accept their validity then can't see the point. What to do?

Last but not least apologies to Balerit for hijacking her post ... but it is relevant to point out private blood test results are not always accepted by GPs.

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JBGH,

Point out that the lab you used is accredited and is as reliable as the hospital lab your practice uses. If GP refuses to accept the private results and they show low levels then GP should order the tests him/herself.

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Clutter,

Good point. Will do so in future. Thanks.

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I don't bother with the GP they made me feel ill they know nothing about thyroid conditions at all. I had private blood tests and posted the results on this site. I then waited for answers and acted upon them I am now well and I am 71 years old without a thyroid. I self medicate.

It did take me the best part of two years but I am so pleased with the results and the wonderful people on this site have given me back my life.

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So pleased you're feeling so much better at last. Self-medicating is frightening but many people on this site know so much about hypothyroidism and what to do. Indeed this forum is incredible and we are all much endetted to the wonderful people who give advice.

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Could I ask you what medication you take each day?

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Hi I now take NDT and T3 combination. 1 NDT + 1/2 of T3 at 6am and at 2.30pm another 1/2 of T3.

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Thank you!

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Your best bet is to get private testing as Clutter recommends, you can tell very little from TSH alone particularly if you have had a total thyroidectomy (TT), as have I. T3 is the key to your feeling of well being and it is that which you should keep an eye on until you begin to feel well. 125mcg is a rather low dose after a TT. From my own experience I had to boost my Levo dose to 138mcg before I was generating enough T3 to feel well.

Private blood tests can be expensive at first but they will get you to your optimal dose much quicker than arguing for months/years with your doctor. After you have got to your optimal dose you will not have to measure your levels much after that, maybe once a year. You will also find that you have to regulate your own dose of Levo since doctors will only work off TSH and that is not going to get you feeling well.

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Would recommend you also test vitamins at same time, unless you can persuade GP to do so

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

Private tests info

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

As you have had Graves' disease in the past it's apparently more common for TSH to remain stuck at low point even if FT4 and FT3 are too low

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 at

tukadmin@thyroiduk.org

Professor Toft recent article saying, T3 may be necessary for many. Note especially his comments on current inadequate treatment following RAI or thyroidectomy

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

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did you get your fibromyalgia diagnosis after your thyroidectomy, or even after you had thyroid issues? If so you may have been given a false diagnosis. Lots of things present as fibromyalgia when they are not. For example, my daughter had EDS, I had a pituitary adenoma - but they tried to pin this label on both of us as it suited them more than doing additional tests.

You are also thwarted in a correct diagnosis by the NHS's refusal to test for T3 - our local hospital will not do this even when the GP asks for it. This is because NHS will not give anyone the cure for T3 deficiency, which is liothyronine, because it costs so much.

The simple answer is to get it done privately like the other good people state here. Or, to pay for a consultant to give you a prescription for an alternative to levothyroxine, such as NatureThroid. Alternatively, you can just buy this online. Although it's great to have a consultant who will support you, and having a prescription makes it cheaper.

Whatever you decide to do, good luck.

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I gave up trying to have my T3 tested on the NHS - it was never done, even when my endo put it on the request form.

I pay £99 and get everything I want (thyroid including T3, antibodies, vitamins and minerals) tested with a home fingerprick test with the Blue Horizons Thyroid 11 test.

Saved begging the doctor and being told ‘we don’t do that’.

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I had a TT many years ago. I take a hefty dose of thyroxine to compensate. When the dose was reduced I got raging fibromyalgia. I upped my dose to see what would happen and like magic all of those particular symptoms disappeared.I think you are undermedicated.

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I have a friend in your very position - TT decades ago but she's been kept on 100 mcg and from her 50's (menopause) has been ill - now fibromyalgia. Docs just won't listen to her.

I could never tolerate Levo but for more than a few weeks... Armour and then T3 alone, BUT, if you don't mind, what do you see as a hefty dose of thyroxine? Thank you! :-)

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A hefty dose of thyroxine is 275mcg. I was on 300mcg for about 45 years, felt great, looked great, had children, ran my own business and then it was reduced to 275mcg. Just about coped on this level and then the powers that be decided I should be reduced to 250mcg. That was when my troubles began....rapid weight gain, looked pregnant, fibromyalgia, depression, fatigue like nothing on earth, to name but a few! Five years of hell and wasted life.

Am now on 275mcg and will not be going below this.

Nobody listens or looks at the patient in front of them, just blood results.

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Thank you so much Fredric - I will pass this on! Oh, I know... boy do I know - scoundrels and scallywags, that's on a good day :-( Take care and be well xox

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I've read several times that TSH is unreliable once you are taking thyroid meds. Some people's bodies once they realise that thyroidxmeds are coming from a different source seem to say why do I bother and basically ignore any more messages coming from the pituitary (TSH) and let us rely on medication instead.

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From reading posts here is seems that 125mcg of Levothyroxine is quite a low dose for someone without a thyroid.

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Much to low in my opinion.

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No, it is not correct - I think one of the papers that diogenes posted says that TSH is more influenced by free T4 than free T3, but he doesn't *have* to test anything else so he won't want to waste his budget. You'd be better off getting your own tests done privately as it is very unlikely that the NHS will prescribe T3 anyway even if you are not converting.

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I don't know how people survive without T3 added to T4 particularly if they have no thyroid gland.

I think the medical profession does a dis-service if patient hasn't fully recovered on levo alone.

The following two links are archived, due to Dr Lowe's untimely death, and Dr Lowe was an Adviser to TUK before he died. He also ran the Fibromyalgia Research Foundation.

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

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

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What I just cannot understand is how, when the body produces T0, T1, T2, T3 and T4 our medical people think that people with dodgy thyroids and even worse people without a thyroid at all can manage on T4 alone?

OK according to this thyca.org/pap-fol/more/horm... T0 - T2 seem to be inert but the rest are needed.

How has this come about? Considering your thyroid affects every organ and function of your body it is madness.

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It has happened because the patient is usually better informed than the doctor, who in turn thinks this cannot be possible!

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Apologies to balerit for jumping on this post ~ but I just wondered if the same would apply to someone who had no output from their thyroid, but hadn't had a TT? I was told I was told I had no output when first diagnosed with Hashis, after EBV and vax damage, and a period of severe illness ~ 'ME', then 'FM' etc, so I just wondered if there was something specific about the TT, or is it also 'no output' of thyroid.

Sorry if this sounds garbled ~ brain not working today! x

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Don't worry. After all this forum shouldn't exist if we all were diagnosed and given thyroid hormone replacements which made us well, but instead the continuing clinical symptoms patients have are dismissed or given 'other' medications for the symptoms.

Even if we have no thyroid gland or insufficient thyroid hormones being produced by the thyroid gland, it has been found that a combination of T4/T3 can relieve clinical symptoms.

I have read that CFS, Fibro, ME were 'named' about ten years after the introduction of levothyroxine. Before that we were diagnosed upon clinical symptoms alone and given a trial of NDT (natural dessicated thyroid hormones). If patient felt much better with relief of symptoms, it was understood they had Hypo.

thyroiduk.org/tuk/newspage....

What you need is a Full Thyroid Function Test. GP or lab wont do all of them. We have two labs (private) who will do the full range and they are pin-prick tests so make sure you are well hydrated a couple of days before. The test should be the earliest, fasting,

with a gap of 24 hours between your last dose of levo and the test and take it afterwards.

The tests are:

TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

Your GP should test B12, Vit D, iron, ferritin and folate.

Post your results on a new question for comments and also put the ranges.

This is from TUK re Researchers proof that T4/T3 is needed for many, if not all who are on levo alone.

thyroiduk.org/tuk/newspage....

Personally, I felt worse on levo than before I was diagnosed but am now well on T3 alone.

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Thank you shaws ~ I suppose I'm constantly looking for reasons why the horrible T4 didn't work for me ~ I feel better without it too, but obviously that wouldn't last long! It literally makes me feel poisoned! GPs have you believe you're awkward and unusual when you tell them this ~ of course I don't feel at all 'unusual' now I've found this forum, and I'm so grateful for all the knowledge you have passed on to me. xx

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The following is details re private tests. Blue Horizon and Medichecks do all of the thyroid ones you want. Medichecks has various 'offers' every Thursday.

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I had an ultrasound scan of my thyroid - the guy said, "It's very small, you must be struggling"? That was largely when taking Armour Thyroid. An endo blamed me for taking T3 and 'doing this (making it smaller) to myself'. (I had long been advised to take T3 by Dr P - diagnosed by Dr Skinner and took T3... GP even prescribed Armour for years for me). They seem to have little clue :-(

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We have to try and cope on T4 as no one will offer us an alternative.

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I know and I find it amazing that those who make these decisions most probably never have had a dysfunctioning thyroid gland and therefore have no idea of the disabling symptoms. They believe a blood test result on a piece of paper tells them how we feel them instead of listening to patient.

They prescribe other medications for the symptoms rather than making sure our T3 is optimum. I don't believe they actually know what hormone is the active one as levo is inactive.

I, too, was more unwell on levo than before I was, finally, diagnosed as not one doctor I saw could tell what was wrong.

It isn't a crime to source thyroid hormones for our own use and adding some T3 to levo might work well for you (you'd have to put up a new post asking for a Private Message to be sent to you), you might find adding T3 to levo might improve your health.

Our Advisers/Researcher have recently published a Paper stating that T3 can make a big difference:-

thyroiduk.org/tuk/newspage....

The British Thyroid Association has made a decision which affects a large number of people whose health is badly affected. I thought doctors helped improve our health - not ruin it by denying us an alternative. It is a very harsh decision and Endos - even if willing - have been forced not to prescribe (some wouldn't prescribe anything but levo).

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I was told by one specialist last year 'oh everything is put down to thyroid conditions today, it's all nonsense'!.

Great!

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We, the sufferers, wish it was all nonsense. Instead they spout nonsense.

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No it is nonsense! You can get your own test done using the recommended ones on thyroid uk it is not too costly as many others here have aready advised. If your doc refuses to accept them that is their problem at least you will get an accurate picture of what is going on and can act accordingly

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Yes thank you, will do.

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Thanks to all of you who replied to my post,

especially Shaws,I found the link to Dr Lowe

Very interesting

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Hi Balerit,

Are you on T3 medication now?

My GP (and I think most of them) do not check T3 hormones, don't know why but only seem to check TSH and T4. I don't believe the answer/reason your GP gave you is correct and sometimes I think they just make it up as they go along lol.

However in my case, I was born with a partial non working thyroid so have been on medication all my life. 200 mcg thyroxine mostly and now 20 mcg Lithyronine as well. I call the T4 dose my natural dose as that has been the dose I have been on for most of my life. The only reason I came to be on T3 is that some silly GP, thought she knew best and dramatically reduced my T4 whilst I was in my 30's and then a whole load of problems were created because of it and subsequently I was introduced to T3 by my then Endo and have been on it ever since plus my T4.

I have recently had my tests done and T3 was not checked, however my TSH had gone up. I was a bit worried, but my GP says that he wants to monitor my T4 medication as he feels it doesn't need to increase, so will recheck my T4 and TSH in three months. I also feel I am ok on it but I think it is out of kilter because I am grieving and stressed out.

I am not personally fussed about him testing my T3 (right or wrong) as then I remain on my T3 medication paid by the NHS and also it would not give the GP/NHS ammunition to take me off it, due to the controversy over the price.

Aren't fibromyalgia and thyroid conditions closely linked - a bit like B12 and anaemia deficiencies?? My friend has it and her sister has thyroid conditions. We have several members of my family including immediate family that have either thyroid conditions and or B12/anaemia.

If you are unhappy, please seek a second opinion.

Take care :)

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Get your own private blood tests done and post the results on here for answers. I did and now self medicate and feel well with no thyroid either.

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