Thyroxine help please

[Mum2010]

For 20 years I've been taking 200mg of thyroxine. Last year my results started showing over medication and since then I've gone down to 170 then now 150mg and still showing over medication Has anyone any insight as to why this is happening. Thank you.

[pennyannie]

Hello Mum2010 and welcome to the forum :

This is a very common first question by new forum members and in order to answer your question we do need the results and ranges of your thyroid blood tests that were interpreted as you needing a dose reduction in T4 - Levothyroxine.

Do you have online access to your medical records held by your primary care provider and can you share these readings with forum members - if not you can register with the doctor's receptionist for same and ask if s/he can print out your last couple of years thyroid blood test results and then post these on the forum for considered opinion.

Ideally we need to see a TSH and Free T3 and Free T4 result and range - and fully understand that in primary care your doctor maybe just going by a TSH seen in isolation.

Once on any form of thyroid hormone replacement the TSH is not reliable measure seen in isolation and why many forum members are forced into paying for their thyroid blood tests.

What symptoms are you dealing with ?

If you go into Thyroid UK - thyroiduk.org - the charity who support this forum there is a check list of both hyper and hypo thyroid symptoms and it helps to tick those applicable and yes, it's not that straight forward, as some symptoms can be seen sitting in both camps.

[greygoose]

Can you give us the actual numbers, please? Just saying that they're showing 'over-medication' tells us nothing at all. We need to know what was tested, the results and the ranges to be able to suggest what might be going on.

For example, if all that was tested was the TSH, and that was low, that doesn't tell us anything at all because TSH is not a thyroid hormone. So, a low TSH on its own does not automatically mean over-medication. You're only over-medicated if your FT3 is very over-range, and they rarely test that.

Also, how do you feel? Do you feel over-medicated?

[Mum2010 in reply to greygoose]

Hi Thank ypu for the replies. I have access to all my GP medical records.

My results are 0.04 and 24.7 , and this hasn't changed much despite dropping 50mg.

I don't have a T3 test as this has never been offered by my GP and unlikely to happen. Because of this im unsure what T3 is about

I take and have done for 4 years vitamin D capsules and magnesium tablets.

I am beginning to notice signs of underactive such as losing my voice and very dry hair and skin and often very tired.

I have another test in 4 weeks time and then a doctor appointment. Some idea of what I need to say to prevent lowering of thyroxine would be useful although I think he is determined to lower the dose again.

Thank you.

Ps I am going to research about T3.

[greygoose in reply to Mum2010]

So, I guess the 0.04 is your TSH, right? And the 24.7 is FT4? But we do need the ranges because they vary from lab to lab and we need those that came with your results.

But your FT4 does look as if it's over-range - would be on most ranges. However, I expect your doctor is only looking at the TSH, and they are terrified of a low TSH! But what your doctor doesn't understand is that if your TSH has been that low for 20 years, there's a possibility that it will never rise, no matter how much he reduces the dose, because the HPT axis has been down-graded. And that is just one of the reasons why dosing by the TSH is utter lunacy! But, doctors know next to nothing about thyroid and do not understand how it all works - or doesn't work, as the case may be.

T3 is the active thyroid hormone. But doctors aren't taught about it in med school so have no idea what it is or what it does. They think that because they weren't taught about it, it is irrelevant, and it's rarely tested - they wouldn't be capable of interpreting the results even if it were! T3 is needed by every single cell in your body to function correctly. So, if your T3 is low, that is what causes your symptoms.

T4, basically a storage hormone, is supposed to convert to T3, but not all hypos are very good at that. So, given how high your FT4 is, I'm guessing that you don't convert very well, either. But, impossible to know unless FT4 and FT3 are tested at the same time. Most people have to do private tests to get full testing.

You can refuse to lower your dose, you know. Your doctor is there to advise you, not dictate to you. Any changes to your dose should be a joint, informed decision. Any doctor that says: I'm going to reduce your dose whether you like it or not, is being very unprofessional. It's your body, your life, your health. Not his. I don't know what you can say to him, because I don't know the man. How they react is very much down to their personality. You could try saying that you refuse to reduce your dose unless you have your FT3 tested. If that is low, you will agree to reduce. If it is low, it's time to start talking about adding some T3 to your levo! (That might shut him up because the last thing he wants is a patient demanding T3!) Or, you can say that if he reduces your dose, against your will, you will buy your own levo on internet and treat yourself. That sometimes gets a good result, too. But, it all depends on the person.

But, the absolute truth of the matter is that TSH, once it gets below 1, it a very poor indicator of thyroid status, and you can have a suppressed TSH whilst still be hypo, and all that tells you is that the pituitary is satisfied, even thought the other parts of your body aren't. And, some people need a very high FT4 in order to get enough FT3 to make them well. Whether he'll understand all that is another matter entirely.

[Mum2010 in reply to greygoose]

Hi everyone Thank you all for your input. I haven't done anything for a number of years as everything seemed hunky dory. I need to do much more research and also get my GP to do a T3 test. I've gone back through my records and ferritin and B12 were always OK. Until lately only TSH was measured although now both T4 and TSH have been measured

I've another test at the end of the month then I need conversation about dosage.

It just seemed odd that the low T4 and high TSH happened after so long and no real idea of why.

Probably have to have T3 done privately although I have an open minded GP practice so maybe I will get this via them.

Once again I appreciate everyone's input.

Thank you

.

[greygoose in reply to Mum2010]

Well, you still haven't given the range for the FT4, which makes it impossible to interpret it, but your TSH is actually low, not high. Your FT4 is high, not low. And, most important to know what time of day the blood draw was for this test.

Some GPs are open to testing T3, some aren't because they don't know what it is nor how to interpret the results. But, even if the GP requests the FT3 test, the lab can refuse to do it. Strange as that may sound, a lab technician can over-rule a doctor about what to test!

If you do it privately, you need to have the FT4 done at t he same time to know how well you convert.

[pennyannie in reply to Mum2010]

T4 is a prohormone and stored in the body and when needed converted in the liver into T3 the active hormone which fuels all your bodily functions from your physical through to your mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.

No thyroid hormone replacement works well until your core strength vitamins -

those of ferritin, folate, B12 and vitamin D - are up and maintained at optimal levels

and conversion of T4 into T3 within the body can also be down regulated by inflammation, antibodies, any physiological stress ( emotional or physical ) depression, dieting and ageing - not an easy ' fix ' but worth mentioning.

Generally speaking optimal conversion of T4 into T3 happens when T4 is in the top quadrant of the range with a T3 reading at around a 1/4 ratio T3/T4 - so with a T4 at say 25 - we would expect a T3 reading at around 6.25 - which may well still be in the given T3 range.

So, I'm guessing your T4 reading over range - and with a low TSH the doctor thinks ?and presumes you are now over medicated -

but the only way to actually know if you are over medicated is to run a T3 and T4 blood test from the same venous blood draw -

and if your T3 is over range - then there is a need to adjust your medication.

Just a thought - on the day of the blood draw - do you withhold taking your T4 until afer the blood draw - so leaving around a 24 hour window from last dose of Levothyroxine ?

Similarly with any vitamins and minerals supplements you maybe taking leave these off for around a week before the blood test so we measure what your body is holding rather than what you have recently ingested.

There are 3 treatment options available on the NHS though your doctor is now unable to prescribe anything other than T4 monotherapy and the arbitrary anti depressants.

Some people - the silent majority - do very well on T4 - Levothyroxine.

Some find - given time - T4 doesn't quite work as well as it once did and find by adding in a little T3 they are able to restore their health and well being.

Some people can't tolerate T4 and need to take T3 - Liothyronine - only.

Whilst others find their health restored better taking Natural Desiccated Thyroid - the original treatment used successfully to treat hypothyroidism for over 100 years prior to Big Pharma launching the much cheaper treatment options of synthetic T3 and T4 thyroid hormone replacement.

[SlowDragon Administrator]

welcome to the forum

How do you feel?

Dose levothyroxine should NOT be changed after just testing TSH

Also very important to always test early morning and last dose levothyroxine 24 hours before test

Is this how you do your tests

Can you add actual results and ranges

Which brand of levothyroxine are you taking

And also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are more common on levothyroxine, especially after dose reduction and especially if your hypothyroidism is autoimmune

Also low vitamin levels more common as we get older

Good vitamin levels necessary for conversion of Ft4 (levothyroxine) to Ft3 (active hormone)

Bloods should be retested 2-3 months after any dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

See detailed reply by SeasideSusie

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

[Buddy195 Administrator]

In the first instance, ask your GP surgery for copies of your thyroid blood test results (with ranges- as these vary between laboratories) and share with us. You are legally entitled to copies of all blood tests.

[pennyannie]

Hey there again :

I guess you are now with information over load and will need to revisit this post and reread all the content several times over the next few days and weeks- I know I did.

To find everything you have ever written and all your replies simply press the Profile icon - top right.

To read any other forum members thyroid journey and everything they have ever written on this forum simply press the icon alongside their nam in any comments they may have made.

Generally speaking all new posts are answered as fully as possible within the first 24 hours of posting and we can all read everything that is being written.

Any new information deserves a new post as tacking it on an ' old ' post maybe missed and you need to make sure you reply within the named reply box as then that forum member gets notified there is a message for them.