Confused: I have taken thyroxin since the early... - Thyroid UK

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Greasyspoon profile image
14 Replies

I have taken thyroxin since the early 80s with no problems. What is T3 and T4? Why do so many people feel unwell?

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Greasyspoon profile image
Greasyspoon
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14 Replies
Marz profile image
Marz

So you have been taking T4 since the 80's. With a bit of luck the T4 will have converted into the ACTIVE hormone T3 . Many people feel unwell due to inadequate dosing and low vitamins and minerals. How much T4 do you take ?

Greasyspoon profile image
Greasyspoon in reply to Marz

I take 100mcg.

Greasyspoon profile image
Greasyspoon in reply to Greasyspoon

Thanks Mara for the explanation. Guess I'm lucky.

Marz profile image
Marz in reply to Greasyspoon

So do you have copies of your results when tested so you can monitor your progress and check what has been missed ? Glad you are feeling well and are without problems - but I personally think you should still monitor your condition and be in control. Sometimes conditions creep up on us as it is impossible to know what is going on inside :-) Sharing results with ranges is one way members here can help each other - by spotting something the GP has missed. Yes it does happen .... A Thyroid problem is not just for Christmas - it is for life and needs careful assessments ....

Greasyspoon profile image
Greasyspoon in reply to Marz

I have annual blood readings taken, the GP always says they are ok, and I feel ok....

Marz profile image
Marz in reply to Greasyspoon

OK is an opinion and not a result :-) So glad you feel OK - that's great - but I would have other things checked to make sure as having a thyroid issue can cause other problems - if not adequately treated. Dementia - heart issues and so forth. We need good levels of thyroid hormones in the blood to keep us going into old age :-) If all the people in Nursing Homes had the correct thyroid tests and treatment - along with tests for B12 - and VitD - we could possibly reduce the Nursing Home population by quite a lot :-)

You are legally entitled to have copies of all your results with ranges. Many Surgeries now have on-line access once you have registered. I live in Crete where we keep all our records.

Hypos have low vitamins and minerals which can lead to all sorts of conditions not recognised by your average GP.

shaws profile image
shawsAdministrator

That's the 24 thousand dollar question as many thousands do fine on levothyroxine.

Mainly the people who either remain undiagnosed due to their TSH not reaching the magic number of 10 before being diagnosed when in other countries doctors diagnose when it is around 3+ also taking account of clinical symptoms.

In the UK I doubt any doctor nowadays know any clinical symptoms and neither would they prescribe on them alone. Some will diagnose if TSH goes above 5 but not many I believe.

Most on this forum have not improved at all on levo, myself included. We are told there is no alternatives but on finding through the internet that there is an organisation in the UK called Thyroiduk.org.uk and it is this organisation that helped me. TUK was the first website and it was due to Lyn Mynott herself remaining very unwell before she took NDT and improved that Thyroiduk.org.uk was set up.

There was no Healthunlocked Thyroiduk.org but now we're on the internet we are getting queries from around the world. Levothyroxine does not suit everyone and, as stated above, the regulations state that no-one has to be diagnosed until the TSH is 10 in the UK. They have also recently withdrawn T3 which many used to get prescribed either as a T4/T3 combination or T3 only as some cannot convert T4 (levothyroxine) into sufficient T3. T4 (levo) is an inactive hormone and has to convert to T3, so you seem to be a good converter of T4 to T3.

Greasyspoon profile image
Greasyspoon in reply to shaws

Thanks for the information.

marsaday profile image
marsaday

Many people take thyroxine and do fine on it. But there is a big minority who are not being treated by the doctors and so are still unwell when taking thyroxine.

Very often the issue is nothing to do the thyroxine (T4) but rather the bodies ability to make use of it. T4 is converted by the body to T3 and this is the hormone which enters a cells mitochondria (engine) and gives it that zap of energy.

So some people who don't get fully better on T4 only add some T3 and find this really helps symptoms.

Sometimes this doesn't help at all and the issue can be a low vitamin and mineral level. e.g., iron is very important in how thyroid hormones work. Then you can get people who have an out of balance adrenal system. This means someone can be high or low in cortisol and this can greatly affect how thyroid hormones work.

SlowDragon profile image
SlowDragonAdministrator

There's at least 2.2 million patients in UK on Levothyroxine. Around 10-15% struggle to convert. That's between 200,000 - 300,000 patients just in UK

Inadequate dose can cause low stomach acid and/or low vitamins. Other common possibilities are coeliac disease, gluten, lactose or casein intolerance, or DNA problems.Adrenal issues are common too

Clutter profile image
Clutter

Greasyspoon,

TSH is a pituitary hormone and T4 and T3 are thyroid hormones. TSH rises when T4 and T3 levels are low, and TSH drops when sufficient T4 and T3 levels are detected. T4 is converted to T3 which is the active hormone and when T3 is low we feel hypothyroid.

Levothyroxine/thyroxine medication is often referred to as T4 as it has 4 atoms of iodine attached. Levothyroxine is a storage hormone and has to be converted into T3.

Liothyronine medication is referred to as T3 as it has 3 atoms of iodine attached. T3 may be added to Levothyroxine if people are poor converters of Levothyroxine to T3 and some people are switched to T3 only if they are intolerant to Levothyroxine.

Greasyspoon profile image
Greasyspoon in reply to Clutter

Thanks, I've learnt a lot this afternoon.

shaws profile image
shawsAdministrator in reply to Greasyspoon

I am sure many members now know more than most doctors or endocrinologists :)

shaws profile image
shawsAdministrator

T4 (levothyroxine) is the inactive thyroid hormone. It converts to T3 (liothyronine) the only Active Thyroid Hormone which is needed in our millions of T3 receptor cells which enables our metabolism to work normally. Brain and heart need the most T3.

Do you always have blood tests for thyroid hormones at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between your last dose and the test and take them afterwards? This procedure gives a more accurate result in our favour as doctors are apt to look only upon the TSH and T4 and not the other hormone.

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