Can I change from levothyroxine to something more effective?

[Teacher10]

Hi I have been using Levothyroxine for over twenty years and still have many hypothyroid symptoms including depression. I have had blood tests that suggest levels are normal. I’m seeing my GP tomorrow. Any ideas on what help I can ask for would be greatly relieved.

[SeasideSusie Remembering]

Teacher10

What are your 'normal' blood test results? Normal just means somewhere withint he range but that doesn't mean optimal. And unless FT3 is tested as well as FT4, you can't possibly know if T4 is converting to T3 which is the active hormone that every cell in our bodies need.

We also need to have optimal levels of nutrients for thyroid hormone to work - Vit D, B12, Folate, Ferritin.

[Teacher10 in reply to SeasideSusie]

I have only had T4 tested. They are testing for Vit D, B12 etc so I’ll have to see what they are. Reading through other comments I think I have to specifically ask for a t3 test.

[Nanaedake in reply to Teacher10]

Lots of labs in the UK won't test FT3 (Free T3) but you can have it done through private labs such as Medichecks or Blue Horizon. You need TSH, FT4 and FT3 done together and if you've not had thyroid antibodies checked then you can get those done too. You need TPO (Thyroid Peroxidase) and TgAb (Thyroglubulin antibodies).

[Clutter]

Teacher10,

There are other therapies but you are unlikely to get them prescribed on the NHS due to Liothyronine (T3) being incredibly expensive compared to Levothyroxine and natural dessicated thyroid (NDT) not being licenced for UK use.

FT3 is rarely tested in primary practice. Even if your GP orders it the lab may decline to do the test unless TSH is very suppressed.

If you order a private TSH, FT4, and FT3 test via thyroiduk.org.uk/tuk/testin... you will be able to see whether FT3 is low which means you could benefit from adding T3 to Levothyroxine or switching to NDT. You would almost certainly have to buy your own T3 or NDT and self medicate.

[Aurealis]

You could ask them to advise you, that’s what they’re there for!

If they can’t, (and don’t suggest T3 or NDT) then they have a duty to refer to someone who can help ie an endocrinologist - but try to get one that prescribes T3 or NDT.

It’s their problem to decide what to do, you don’t have to do their job for them but if they don’t help you at this appointment, make another, then another with the same GP I recommend the pester factor

I didn’t find tests very helpful ever, but I coped for many years on Levothyroxine by taking a higher dose than GP would have preferred, but always adjusted by how I felt not the test results. There isn’t a particularly linear relationship between dose and test results. My test results sometimes go down when dose is increased and visa versa.

I started T3 without ever having a T3 test. My symptoms were enough. But it’s a last resort, difficult to get stable in my experience.

Good luck.

[Hashimotosgirl in reply to Aurealis]

I am on T3 and eltroxin not been tested for reverse T3 or T4 but normal test day I an over active now don't agree with this still depressed. Fat and body aches T3 worked by it self for four years felt great and was slim then suddenly felt unwell does anyone ever suffer this thanks in advance very distressed

[greygoose in reply to Hashimotosgirl]

Hashimotosgirl, it would be better if you posted your own question in a new thread. More people will see it, and you will get better responses, rather than tagging your question onto someone else's, which can get very confusing.

You also need to give more detail :

* what and how much you are taking, and for how long

* when you were diagnosed and with what

* lab results and ranges - ranges are very important!

[Aurealis in reply to Hashimotosgirl]

Yes I’ve been there. The solution for me was NDT with T3.

[SlowDragon Administrator]

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 [e-mail]. print it and highlight question 6 to show your doctor.

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

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

Link about antibodies

thyroiduk.org.uk/tuk/about_...

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Print this list of symptoms off, tick all that apply and take to GP

thyroiduk.org/tuk/about_the...

Essential to know if you have Hashimoto's (high antibodies)

Depression is linked to low FT3

Vitamins are very often too low

Always get actual results and ranges on all blood tests

[lisabax]

I, like you, struggled on with hypothyroid symptoms for many years until I got to the stage where I thought I was developing dementia - I really couldn't think straight. The NHS as others have said will only usually test your TSH level, if you are lucky T4, but hardly ever T3. It may be that you are not converting T4 to T3, in which case having a blood test as Clutter has suggested, with one of the ones that TUK has a link to, will give you some idea what the situation is. If you post these results on this forum, people will comment. If you cannot convert, and sometimes this happens years after diagnosis and being OK on T4, then you would need additional T3, which as someone has pointed out is a bone of contention in the NHS at the moment. I was prescribed T3 by an endocrinologist at the point when my symptoms were unbearable, but that was in the day that it wasn't too expensive. I am now on NDT. I don't know if this has helped but please get back in touch if you want.

[Wizzy68]

Morning,I feel exactly the same but as in the UK and recently changed my doctor I was hoping to get him to understand but as I'm in the normal range he won't entertain that it could still be my thyroid,I left on Tue with a leaflet to ring a mental health group as says I'm depressed and anxious. I've been on co codomol 30/500 for a while for my pain but he wants to take me off them because it could be them that contributing to my pain.

No idea how you get past this other then self medicating. Considering coming g off my levo to see if the pains disappear.

Any other UK patients with the same battle?

[Eva60 in reply to Wizzy68]

Exactly the same. Hopeless, don't know what to do, no one listens, can't cope with my job.... Bought some alternative medicine books about Hashimoto and going to heal myself....

[SlowDragon Administrator in reply to Eva60]

Eva60

First step is to get vitamins, antibodies and thyroid tests.

If you know you have Hashimoto's then are you on strictly gluten free diet?

Most/many find it extremely beneficial

Good levels of vitamin D, folate, ferritin and B12 too

Levothyroxine dose high enough to bring TSH down to around one and FT4 towards top of range

[Eva60 in reply to SlowDragon]

My GP doesn't want to do more tests or reffer me to endocrinology because my TSH are "in range". I'm on levothyroxin 50 for 4 years, taking vitamins and minerals. I'm recently suffering from all classic hypothyroid symptoms, stressed. She put me on antidepressants, probably because everything is just "in my head". I went gluten free for two months without any change but I guess it's probably too short trial, I'll do it properly... Thanks for answer, at least I know there are others.......

[SlowDragon Administrator in reply to Eva60]

To get anywhere you need full testing.

I wasted 20 years listening to that **** that all tests were normal

More on my profile

[SlowDragon Administrator in reply to Wizzy68]

Wizzy68

Treat yourself to an early Christmas present and get full Thyroid and vitamin tests

They are on offer too I think at cheaper price

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

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

Link about antibodies

thyroiduk.org.uk/tuk/about_...

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Print this list of symptoms off, tick all that apply

thyroiduk.org/tuk/about_the...