T3?: I have taken T4 for years. I always feel a... - Thyroid UK

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T3?

Jones1000 profile image
19 Replies

I have taken T4 for years. I always feel a bit groggy and out of it and have wondered if I may be someone who might benefit from combined T4 & T3.

I asked my GP if I could have a free T3 test instead of just the usual TSH test. She said I could not but that I could have a T4 test and that combined with the TSH test would give her all she needed to know so that a T3 test was unnecessary,

I referred to Thyroid UK as a respected body that takes different view. My GP said that the NHS does not offer "the gold standard" and that even if I had a test for T3 showing that it was deficient, the only available medicine for hypothyroidism via the NHS was T4 so it would be a pointless exercise.

I was made to feel rather awkward and unreasonable for wanting to explore a possibility of feeling better. I had thought that T4 + T3 was available through the NHS as there was press coverage not so long ago that they were paying too high a price for it.

Has T3 been withdrawn from the NHS now.?

All the best

NJ

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shaws profile image
shawsAdministrator

You can get Free T4 and Free done privately through one of our private labs if you wished. The are home pinprick tests so I shall give you a link, just in case:

We have two labs, Blue Horizon and Medichecks.

thyroiduk.org.uk/tuk/testin...

Jones1000 profile image
Jones1000 in reply to shaws

Thank you very much Shaws. I think I will try this, i'll have to go in to someone though as I'd be no good at pricking my own finger. I have to look away and dig my nails into my palms when I have a blood test

All the best

Jonesy

shaws profile image
shawsAdministrator in reply to Jones1000

I think they can also make arrangements to have blood drawn.

SlowDragon profile image
SlowDragonAdministrator

You need to know if you have Hashimoto's and/or low vitamin levels and deal with these first

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...

See Box 1. Towards end of article

Some possible causes of persistent symptoms in euthyroid patients on L-T4

You will see low vitamin D, folate, ferritin and B12 listed

onlinelibrary.wiley.com/doi...

Post results and ranges and members can advise

If your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's

Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ask GP for coeliac blood test first

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

If after got TSH around one and FT4 towards top of range, vitamins optimal and if, Hashimoto's, strictly gluten free diet

Then if FT3 remains low look at adding small dose of T3

Many people are simply on too small a dose and then have low vitamin levels

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:
tukadmin@thyroiduk.org

Also request list of recommended thyroid specialists, some are T3 friendly

Prof Toft - article just published now saying T3 is likely essential for many, unless going to take high dose Levo and run suppressed TSH

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

Lolota profile image
Lolota in reply to SlowDragon

Wow, a very complete and great answer. Thank you. I asked my Doctor for a complete thyroid test too and he just wants to do the tsh and t4. I am in France and I have a private insurance so normally cost should not be an issue but he firmly refused. I definitely won't see him again and I can clearly confirm that being healthy is not a priority for them.

My problem is that I have low temperatures and I went through years of stress. It's only now that I am feeling better, as I have improved a lot my diet and make sure to have good nights sleep but I still get anxiety and suffer pms before my period. I just want to really feel better in my life now. What would you advise?

SlowDragon profile image
SlowDragonAdministrator in reply to Lolota

Do you come to UK?

Not sure Medichecks or Blue Horizon post to France - suggest you email and ask

Get private tests done somehow

Lolota profile image
Lolota in reply to SlowDragon

Hi, thank you for your answer. I do go to London time to time as I fell in love with this city, I really love a lot Brits too, you are so polite and easy going compared to French... Back to the subject, I will try to have the tests done with a new GP. Otherwise I will see to do them with a private lab. Do you know a bit about the Wilson protocol, that's what I would like to try once I see the results.

SlowDragon profile image
SlowDragonAdministrator in reply to Lolota

No sorry

I know about it

But never used it

I have Hashimotos, gluten intolerance and DIO2 gene

T3/T4 mix - more on my profile

Jones1000 profile image
Jones1000 in reply to SlowDragon

Thank you SlowDragon that's very comprehensive and informative. When I saw a specialist about 20 years ago he said that my hypothyroidism was one involving autoimmune disease and so I think that is Hashimotos, it does ring a bell. If I remember the name correctly it began with Graves' disease, I was hyperthyroid, that was treated with tablets and I ended up going in the other direction and have been there ever since.

I will try to get one of the private tests as you suggest.

All the best

Jonesy

Anthea55 profile image
Anthea55

As well as replacement hormones, such as levo / T4, you need your vitamins and minerals to be good. Have you had any tests for vitamins and minerals? The usual ones advised on here are ferritin, folate, vit B12 and vit D, but there are others. If any of these are low or under range your body won't make best use of your T4 and won't convert T4 to T3 as well as you need.

You may be able to get some of these from your GP, but they are not well trained in nutrition.

Many of us also find that we have low stomach acid - another thing the docs don't know much about. If stomach acid is low, then we don't absorb all the vits & minerals in our food. See this link.

drmyhill.co.uk/wiki/Hypochl...

Another thing that can cause problems is if you are taking other medication as well as levo. You'll find more info on the Thyroid UK website at thyroiduk.org/index.html

Jones1000 profile image
Jones1000 in reply to Anthea55

Thank you very much Anthea. It is very useful information. My GP has done other tests including iron, full blood and something in the B vitimans which were all OK. I'm not sure if they looked at vitamin D. I will check this.

I am not sure about stomach acid either, I often take cider vinegar in the morning as I understand it has a number of benefits but perhaps that is affecting acid levels.

I am a veggie and do try to eat a good and balanced diet, my iron has been low in the past but I've got it back up to in range with porridge and spinach (not at the same time)

All the best

Jonesy

SlowDragon profile image
SlowDragonAdministrator in reply to Jones1000

As you are vegetarian, unless you supplement B12, you are very likely too low in this essential vitamin, plus other B vitamins may be low

Jones1000 profile image
Jones1000 in reply to SlowDragon

Hi SlowDragon. Thank you for suggesting this. I have dairy products and a very good range of other foods including nuts, greens, pulses, fruit, veggies and whole grains which I think cover all the B's.

Blue Horizon 11 blood test is a good place to start and then post all of your results on here first with the ranges for help and advice.

Jones1000 profile image
Jones1000 in reply to

Thank you Bunnyjean

I think I will have to get my act together and have this test.

All the best

Jonesy

Hi Jones,

I just read your post & by the way I never got into reading any of them in all these years .

I find your writeup somewhat disturbing?

You don't say which City your from?

My doctor in Brisbane Australia & a few other Doctors & Endroconoligist , insist on Tsh Abtibodies & T3 , T4 & reverse T3, Vitamin D, Iron Studies, B12 , Selenium , Zinc & Iodine ,plus the usual full blood tests . These tests show I need those supplements , along with other health products & probiotics , stomach enzymes .

I try to stay positive in that Hormones can be balanced , if there monitored by a professional , in the correct way , with a practioner that's aware of the Endoctrine system witin our bodies.

I enjoy living a healthy lifestyle with exercise & gardening to interior decorating & just keeping busy, but there's so many people suffering out there that probably aren't able to move . Its taken a lot of mental motivation to push myself for help . I never give up trying .

You may have a specialist as It's worth finding a good Endroconoligist, only deal with the Endoctrine side of it , underactive or autoimmune diseases Hashimotoes & overactive like Graves. ...etc I see mine once a year & my Doctor & I manage from my blood tests.

googling the internet led me to contact details on some great practioners .

I copied some info on reverse T3 via doctors links etc & researched my local compounding pharmacy that makes my T3 & progesterone . My Doctor & I, decided to trial a bit of it as my list below.

I'm sorry to hear your doctor isn't aware that a reverse T3 test is necessary? Or they just don't arrange the tests in your City due to costs or there just not very informed as Endroconoligists? Or you can ask for a referral for your own Endro.

There's also Sandra Cabot , a Naturopath / fully qualified practioner/ Doctor , was on Australian T.V. For years. She does phone consults by appointment & will write out the blood tests you need or any extras you ask for. She follows all Hormones very well as well as supplements.

I think I had to pay QML $90.00 for the reverse T3. test.

I've had Hashimotoes for 28 years , was during a Ross River Virus , which hit me quite badly at that time , raising 2 Sons & fortunate that I had & still have an amazing husband to get me through those times , in many ways..

There was quite an outbreak of RR virus back then .

We didn't know I was suffering badly from Thyroid issues until 6 mths later . My Naturopath & herbalists helped with My Andrenals & liver were exhausted & not knowing I was depleted of Thyroid hormones ,for 6 months nearly killed me, but, those blood tests saved my life🙏

My Naturopath has Hashimotoes ,. She goes overseas to do seminars obout it. Although , we both have to take hormone replacement. we both tried the natural approach & do supplements.

1 yearly visits to my Endroconoligist & 6 mthly blood tests via my doctor & then take test copies to my Naturopath .

They say that my Hashimoties was bought on by the R.R. Virus , but, I believe it was from A Tetnus Shot somehow unbalanced or interfered with my genetics ... ?

I have learnt how to take control of my own health . With blood tests I know , that I need just a bit of T3 until my antibodies & my reverse T 3 settle down.

I still take absolutely everything that is supposed to help convert t 4 to its usable active t3 .

The compounded T3 is a slow release , gentle & lasts in my body for up to 6 hours.

I still need to take 75 mcg eltroxin , has NO gluten or lactose) .

I only just changed from 75 mcg Thyroxine t4 as i still convert a bit of T3, which is why I take my T4 on rising , only need to wait 30 mins .before eating .

I have never converted enough T 3 & my antibodies & reverse t3 are always up , , means my T4 is converting to reverse t3 , which I'm storing & toxic as it isn't being used as the active T 3 should be .

Trialing 2.5 mcg of slow release compounded onto s white powder grlitin capsul of T3 , That I take at 1.pm . It's not derived from human or animal pig hormone , which I won't touch as I've heard there hormones can be quite unpredictable as every pig is different . I'm not interested in using natural hormones as I've also heard too many negative issues on Natural hormones.

I'm yet to research that a bit more?

Hormone inbalances can take months for some & weeks in others . I do know that I wish there was a Hormone that takes away the aches in my Bones . I refuse to take pain killers . Moving around makes me feel better . I do sit , but, it always hurts on rising as the body cools down .

I'm told the reverse T3 & antibodies cause this.

Anyway, trailing the above & see how that goes . The main thing is I can move around as there's plenty of people out there that just don't have the correct guidance in there lives with Hormone issues .

Once again, I'm sorry if your not able to find a suitable doctor if your not in Australia . All the best in finding one that can listen to you & allow the blood tests or you'll never know what your body needs & doesn't need.?

I'm preying the Pharmaceutical Companies & Labs , are working on better formulas & ones that don't also deplete our bones health.

I hope I've been of some help .

All the best .

Therese .C.

Jones1000 profile image
Jones1000 in reply to

Hi Therese

Thank you for all the information it is very helpful indeed. i had never heard of the RR virus, it sounds awful.

I am in West London UK. It is an affluent area, but myself not so much. The GP told me that most patients at the practice have private medical schemes. As someone who does not have private medical cover it did occur to me that if most of the patients have private cover there might be room for a little more help from the local NHS for those without it.

I last saw a specialist about 20 years ago. I asked for a referral to a specialist endochronologist the other day but the GP said it was too expensive and that the surgery can handle thyroid problems itself.

They are not all bad, they have done iron and vitimin B I think and full blood count tests and all that is OK. But they draw the line at T3 and so I will try to have this tested via one of the suggestions kindly given on other posts.

Thank you again for your reply and keep plugging away.

All the best

Jonesy

Jones1000 profile image
Jones1000

Thank you for replying. I will try to get a test done privately. I do get a bit exasperated by the NHS though as I think all the attempts to save money by cutting corners just work out more expensive one way or another in the end. I think there are a lot of people known to have thyroid problems whose condition is not being assessed fully so that they do not have the appropriate treatment and I believe there will be many people with thyroid difficulties as yet undiagnosed. The cost of T3 in the U.K. is hard to understand so if test results suggest T3 may help I'll look to Europe as the source (if Europe is still speaking to us)

All the best

Jonesy

Fantastic information Slowdragon, thank you for your help x

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