Thyroid UK
84,141 members99,124 posts

Now 2 weeks in to a T3 only regime

Years of getting no where and being told I was depressed, Fibro, ME etc. I have now been taking T3 only myself. I had to arrange my own supply. Although I am now not sure why the doctors have not offered it to me. When I feel well enough to hold a thought I will be asking them why in 6 years it has not been mentioned.

I do feel better, but I know there is a long way to go to see if this is the final solution. I am going to go and see the doctor soon to see if he can prescribe T3 for me. He cannot say that it will not work, if I have tried and proved that it does.

Do any of the people on this forum that live in France know what the options are, re brands and tablet sizes and any recommendations. Just in case (!) I have a choice.

Can a GP prescribe here. Even the Endo's have never mentioned it as being on a list of options.

So any information would be gratefully received.

Thanks

24 Replies
oldestnewest

When you begin T3, you increase by 1/4 tablet every two weeks until your symptoms are relieved. I have read that Pulse/Temp should be taken several a day when beginning so that if you feel very hot you may find temp not much higher- if pulse goes too high drop to previous dose.

Despite us feeling much better if levo etc didn't prove our health in the UK they have stopped providing T3 to be added to T4 or T4 only. They've always insisted that levo is superior but I don't think it is if you take into account that NDT was the very original replacement and T3 is more beneficial when added to T4 or T3 only for thyroid hormone resistance, I shall give you linkS:-

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

nebula.wsimg.com/b822d36efe...

web.archive.org/web/2010112...

Reply

Why exactly did they stop prescribing T3 in UK - cost only or? Is it both GP and Endo who have stopped? Living in Scandinavia and get my prescription of T3 from an Internist. Getting worried though that this stop might spread world wide. It's crazy- what are people with bad conversion supposed to do?

1 like
Reply

It has been stopped immediately and all doctors have been told not to prescribed and Endos too.

They wanted an excuse to stop/prevent prescribing as the motto is 'levo and levo alone' and the rise in cost of T3 was a 'perfect' excuse. Up to over £250 per pack.

We have a petition going and those who were prescribed T3 only were devastated it was withdrawn. Even before they could source an alternative. T3 is life-saving for many and even Research (which BTA and Endocrinogists never appear to read) shows that many benefit with T4/T3 combination. At one time we could also get NDT prescribed but that was banned a while ago now through False Statements:

thyroidscience.com/Criticis...

This is just an example:

healthunlocked.com/thyroidu...

So many went cold turkey I should imagine. The concensus of Endocrinologist is the levothyroxine is a 'perfect' replacement and they must think we are lying that we feel worse when it's removed with severe clinical symptoms.

1 like
Reply

This is absolutely crazy, like a lot of things regarding treating thyroid and adrenals. The risks, side effects etc with T3 is not that high but yet they are so reluctant, but handing out a lot of antidepressants is no problem.

Reply

Big Pharma must make some nice profits from hypothyroid patients when not optimally dosed as they get prescribed, anti-d's, pain relief, stomach meds, etc etc instead of a decent thyroid hormone which makes them well. Levo alone being prescribed and many may well develop more serious illnesses due to being on insufficient but told 'normal' with regard to tests.

1 like
Reply
1 like
Reply

Hi

I still get my T3 from the NHS.

Regards

Frank

Reply

Me too from endo, Kingston Surrey, was prescribed Aug 17 although she did not mention increasing every 2 weeks

Reply

Hello

Do you know if endos in the uk are able to write a private prescription as the first stage of trying to get T3 from France or Germany via a chemist here? Or does a private prescription have to be obtained from a gp?

Reply

I don't think NHS GPs can give private prescriptions but others will respond if I'm wrong.

Private doctors/endos can but in the UK T3 at present is about £250 per month.

If you email louise.roberts@thyroiduk.org.uk and ask for a list of sympathetic doctors.

You could try to source your own T3 and with help from members (quite a few have done so) either add some to levo or take it alone. As no information is allowed on the open forum, ask for a Private Message to be sent to you.

Reply

Thanks for that. I have been taking T3 for 18 months now, meds that I got in Greece, however with that supply dwindling and very uncertain I need to be able to get a reliable supply before long. I am fairly certain that when I was on t4 and became ill and very toxic it caused some damage to my heart as I have just had a total heart block due to the electrical impulses failing and have had a pacemaker fitted. I will NOT take t4 again so my life depends on it so to speak.( as are many others)

I will check up on the sympathetic doctors, thank you.

Reply

I am sorry you had to have a pacemaker fitted. I have read that if undermedicated with levo (or any other thyroid hormones I believe) that heart problems can arise. I had constant palps with levo which ceased when I got to a proper dose of T3.

I hope you get a prescription from Endo then you'll have no sourcing problems.

Reply

If you can prove that levo has caused your heart problem I don't think they can deny you T3 on a named-patient basis.

You really shouldn't be supplying your own but you might have to see your local MP and he can contact Lyn Mynott at Thyroiduk.org.uk

thyroiduk.org.uk/

I am another who will not take T4 again as it caused my heart to have severe palpitations and had a few trips by ambulance to the A&E. (I was discharged from the A&E initially after an overnight stay) as probably viral with high cholesterol. I actually had a TSH of 100 which not one doctor/specialist/private ever diagnosed. You see they know no clinical symptoms and a higher cholesterol is one of the main clinical symptoms but they assume, obviously, it is due to bad diet.

Reply

@shaws when I started endo told me 10mg for first week then 20mg in 2 doses. No other advice. After 4 weeks I felt much better, headaches and other aches disappeared. But then returned when period arrived and never went away (I know thyroid/adrenals/sex hormones all linked)

Does this suggest a dose increase is necessary? I'm not due to see endo again until 18th Dec (!) so have just done private test last week to check levels

Reply

I looked at a couple of your past post and cannot see proper blood test results.

20mcg of T3 is equal to around 60mcg of levothyroxine (a starting dose). It should be increased by 1/4 tablet every 2 weeks until you feel well.

Your pulse/temp should be taken before you begin and I take mine in one dose as stomach has to be empty and splitting doses makes that difficult. If temp/pulse goes to fast or high, drop back by 1/4.

Reply

Thank Shaws, my blood tests were all over the place before I started the t3, tsh 93, t3 'virtually undetectable' according to endo as I had taken myself off T4 6 wks earlier due to unbearable headaches and was taking nothing before she prescribed.

I was on 50mg Levo and trying to increase to 70/80g as per endo advice before I stopped due to worsening side effects, so 20mg sounds about right for a starting dose, just wasn't given any other instructions other than 'see u in 3 mths' so thanks for your advice.

I may try taking all at once as I do forget the pm dose, it's the arrival of the headache that reminds me!

Reply

The following specialist always directed once daily dose. I also liked the way he treated/diagnosed patients. He was also an Adviser to Thyroiduk but unfortunately died due to an accident.

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

1 like
Reply

I take mine when I get up with one full glass of water and wait an hour before eating. Then I am as free as a bird to do what I want without the bother of carrying tablets around and the inconvenience of when to eat. Excerpt:

Dr. Lowe: I respectfully disagree with your endocrinologist. Studies indicate that T4 is of no use to anyone except, figuratively, as a storage unit for the metabolically-active thyroid hormones T3, T2, and possibly T1. When T4 ends its long ride through the circulating blood, it enters cells. There, enzymes convert it to T3, and, after a while, other enzymes convert T3 to T2. The T2 becomes T1, and eventually T1 becomes T0 (T-zero). T0 is just the amino acid backbone(called "tyrosine") with no iodine atoms attached. Because it has no attached iodine atoms, T0 is no more a hormone than is T4.

Rather than being a hormone, T4 is a prohormone. That means that enzymes have to convert T4 to T3 before T4 benefits us. T4 is no more a hormone than beans in an unopened can are a food. For all practical purposes, canned beans become food only when a can opener frees them so you can eat them. Hence, T4, like canned beans, only potentially benefits us, but actually does so only after being freed from its metabolically unusable form.

Your endocrinologist may say that T4 is a gentler way to get T3 into your body. This to me, however, is a specious argument. When taken properly, T3 can effect one as gently as T3 derived from T4.

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

1 like
Reply

There are many endocrinologists in UK who recognise need for T3, but increasingly, if they are NHS, they either have to prescribe privately or advise you buy your own

I got NHS trial earlier this year and agreement to continue on NHS prescription.

Patients Association report scathing of NHS England consultation

patients-association.org.uk...

Reply

Thanks for post the above link. It was very informative and re T3:-

"We note the conclusion of PresQIPP’s review of liothyronine that there is insufficient evidence to justify its use; however, absence of evidence is not evidence of absence, and the strength and extent of the representation we have received leaves us minded to feel that further investigation is needed and that these proposals should not be implemented with respect to liothyronine.

We note also that Thyroid UK has expressed concern about the impact already caused by the PresQIPP review. Accordingly, we strongly recommend that NHS England withdraw liothyronine from the list of medicines within these proposals, and investigate the concerns raised by patients.

While it is doing this, NHS England should clarify to CCGs and pharmacies that the availability of liothyronine should not be restricted, as is currently happening in some areas contrary to advice from the British Thyroid Association."

I don't think anything has happened yet with regard to the last para.

Reply

I know some people on here are also in France - what is their experience though?

Reply

Yes, I live in France. And GPs/endos here are just as ignorant as those in the UK. I've seen a lot of doctors here since I was diagnosed, and several endos. Some just have no idea what T3 even is! Others think it doesn't do any good. I've always had to mention it myself, no doctor has even mentioned it. But, I usually manage to get it prescribed in the end, by sheet doggedness. There is only one brand - Cynomel - and only one strength - 25 mcg. It is prescription only. Can't think of anything else to tell you...

Just go to the doctor of your choice and tell him that you are on T3 only and would like a prescription, please. Don't go cap in hand, asking for it. If he thinks you are already being prescribed it, he will carry on prescribing it. There might be some arguments because he doesn't like your suppressed TSH, but you just have to insist that that's the way you need it. End of. :)

2 likes
Reply

I was prescribed T4 in the UK from diagnosis in 1981 to 1995 when a private doctor changed me to T3 only. I had never heard of T3. My life started to begin then, except I was on much too low dose (20mcg a day) until 2014, when I slowly increased to 40mcg a day all taken at the same time. It may help your cause, as it did mine, to get a DIO2 genetic test to see if your body is unable to convert T4 into T3 due to a faulty gene from one parent or both. When I was threatened with the withdrawal of my T3 I waved my DIO2 print out in front of a variety of doctors. They don't understand it, but it worked :-) I used Regenerus which has been recommended on this forum regeneruslabs.com/page/home...

They have a variety of thyroid gene tests so you will need to contact them either by email or phone to ask for the correct Thyroid DIO2 Test. They are very helpful and friendly.

1 like
Reply

My GP and Endo appear to have very little to no knowledge of thyroid problems. I never visit them anymore I just use this site for information and now self medicate. I have been using NDT but have just started taking T3. I buy the T3 without a prescription from the local Pharmacy. The cost is 6.96 euros for two boxes.

Reply

You may also like...