If you are on T3, who prescribes it for you? - Thyroid UK

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If you are on T3, who prescribes it for you?

lynmynott profile imagelynmynottPartnerThyroid UK220 Voters

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35 Replies
maggiew profile image
maggiew

Have been on combination T4 100 mcgms and T3 10 mcgms for 7 years and have been much better since changing from 150mcgms/175mcgms alternate days, seen and set in motion by Dr Toft RIEdinburgh

PinkNinja profile image
PinkNinja in reply to maggiew

Glad to hear you are so much better on this regimen :)

clippetyclop profile image
clippetyclop

Having been told by the head of endocrinology that they do not prescribe t3 and don't believe in it....having suffered for 2yrs on levo with no relief from symtoms....I have resorted to t3 from Internet and in one wk of using had an amazing relief from symptoms...which has only gotten better and better. I do monitor my bp,pulse,temp and get blood tests to keep an eye on levels. This route not for everyone but I personally felt I had no other options and could not go on as I was with zero quality of life.

PinkNinja profile image
PinkNinja in reply to clippetyclop

Glad it's working for you :) I noticed the change in a few days. I think dropping the t4 had something to do with it. I really seem to have a problem with t4!

clippetyclop profile image
clippetyclop in reply to PinkNinja

I still take a little t4 too but nothing like the amount they had me on!

maggiew profile image
maggiew in reply to PinkNinja

I am pretty sure that I am kept pretty steady by having the 100mcgms of T4 and that the T3 10mgms daily is what keeps my mind and other processes functioning well. I know that if my pulse rate drops below 70 then I am needing a little more T3 and with the okay of my endocrinologist I will take an additional 5mgs and see a difference within an hour. This probably only happens once a month. I am not wanting to get hypo, this did happen when I was on 150/175mcgms of T4 7 years ago but at the same time I was not functioning properly, my brain was often very foggy, I had 3 day headaches and couldn't get out of bed. The new regime really worked for me. Seeing Dr Toft was my life saver.

PinkNinja profile image
PinkNinja in reply to maggiew

I know some people don't like a lot of what is in the latest edition of Dr Toft's booklet, but I have always felt he was censoring himself a little to keep the 'Powers that Be' at bay (although I could be wrong!). He's said too much good stuff to not be a great thyroid doctor :)

maggiew profile image
maggiew in reply to PinkNinja

I think what you say is broadly right and I owe my petty reasonable health to him Maggie W

Margo profile image
Margo in reply to maggiew

I would like to get an appointment for my boyfriend who can't get diagnosed, althogh he has clear signs of low thyroid. Was thinking of Dr.Toft. Does he see people on the NHS? Where is he based?

PinkNinja profile image
PinkNinja

I was prescribed t3 when originally diagnosed as my GP at the time felt it would be best for me. Unfortunately, a couple of years later, he told me he 'had to' put me on thyroxine even though he didn't want to as I was so well. I went very gradually downhill until I got to the point where I could barely function and was in constant pain. I kept being told it was not my thyroid but I couldn't expect to feel totally well because of my thyroid, so which was it? So contradictory!

Anyway, since switching back to t3 I feel almost normal again. I think it will take a while to fully recover as I am sure there has been damage as a result of being inadequately treated all these years.

clippetyclop profile image
clippetyclop in reply to PinkNinja

I was absolutely disgusted with the way I was treated by the endo...his answer was it must be something else we've cured you!?!......my symptoms were even worse than when I first saw them!?!...his reply to qus were ridiculous and he was an arrogant small minded idiot!.....shocking that this seems to be quite common practice amongst endos!

Lilian15 profile image
Lilian15

I initially had it prescribed to me from a private doctor but it was not until 12 years later that the NHS consultant actually did the right tests and found out that I do need T3.

Myrna profile image
Myrna

How can you tell that the T3 you get on the internet is safe? Could you advise me where to get it and how to take it please?

PinkNinja profile image
PinkNinja in reply to Myrna

Can we please remember to keep replies about where to get prescription medications to private messages only :)

Have you tried asking your GP for a referral to an endocrinologist if they have refused to prescribe it themselves? Sometimes that gets people their T3 :)

Hopefully someone will be able to message you some details. Do take it very carefully! Do your research if you feel this is the only option. It is always a good idea to make sure you are on enough thyroxine first. Often people are kept on too low a dose of thyroxine and they feel better when it is increase so it is a good idea to try that first :)

moonbeam001 profile image
moonbeam001 in reply to Myrna

Hi I am not allowed to give info on here but if you just type in Mexico T3 its at the top of page and yes it is safe I take it :) Gosh and I am happy once more :)

PinkNinja profile image
PinkNinja in reply to moonbeam001

Or you can send a message :) Of course, Thyroid UK do not recommend self-medication but understand that many have to resort to this due to the current shortcomings in certain areas...

PinkNinja profile image
PinkNinja in reply to moonbeam001

Also be aware that the order of search results won't be the same for everyone on every search engine. I am assuming you mean to type into a search engine because you won't find that information on this site :)

moonbeam001 profile image
moonbeam001

I was very rudely refused T3 yet again, by my Endocrinologist. Because I was feeling so ill I had no other option to purchase from Mexico. Luckily I did not need a prescription. The Cynomol (generic) came very quickly with no probs at all. I started with 1/2 tablet a month ago and this week I have just started taking a full tablet (25) mg.

I can tell you, I feel normal again after suffering for 2 years and putting on 2 stone in weight. Constipation has disappeared and at last I am smiling again.

One last thing, my Endocrinologist told me I should not read too much off the net and these forums are all fake !!

How narrow minded is he ! So there is hope for all of us, its a big thank you to Mexico.

Margriet UK

PinkNinja profile image
PinkNinja in reply to moonbeam001

Wow! This forum appears on the NHS website! I'm sure they wouldn't allow that if it was 'fake'!

Scroll down this page and see the glory that is the green box :D

nhs.uk/Conditions/Thyroid-u...

moonbeam001 profile image
moonbeam001 in reply to PinkNinja

Hi Carolyn, yes my Endo was very very rude. To quote ' I told you last time and I am telling you again, you are not being subscribed T3 There is absolutely no, medical evidence that T3 does any good at all ' So there you have it, I really hope he is told of this, someone needs to tell the NHS that T3 transforms 'some' peoples lives. But nothing will be done, that's for sure,

PinkNinja profile image
PinkNinja in reply to moonbeam001

Why do our thyroids produce t3 if it isn't necessary? Sorry, just playing devil's advocate because it's fun :D

missdove profile image
missdove

Originally I was prescribed T3 by an NHS Endo, but the dose was not high enough for me so I tried T4 again under my GP for nearly a year with no positive results, so I am self medicating on T3 from Mexico as I am waiting to see a Rheumy and my Endo wants to wait and see what the results are from that but its going to take months to get an appointment and I am not prepared to watch even more of my life go down the drain. I am nowhere near where I want to be healthwise but at least I have some energy at the moment and things are improving a little...

Agapanthus profile image
Agapanthus

I was lucky enough to be referred by my GP to an endo who was prepared to prescribe me some T3 to add to my T4 I had been taking for 18 years, but getting sicker. However I actually felt worse and then the same and stopped after 6 weeks.

I then had an email conversation with him and told him of Paul Robinson's book on T3 (he hadn't heard of it) and he agreed to write to my GP to give me a go at T3 only. I did this for 4 mths, and then added back in a little T4 again, but having felt worse after doing that, I am back on the T3 only. I am v lucky to have a GP who trusts me to sort out my own doses.

KLR22 profile image
KLR22

Initially I was given a prescription by an Endocrinologist who I saw privately in 2005 as I was feeling so ill. He started me on T3 and my GP has carried on prescribing it for me. I'm on a combination of 10 mcg T3 and 150/175 mcg T4.

Clutter profile image
Clutter

I'm currently using up an overorder of T3 prescribed by my GP on the Endo's instruction prior to 2 x RAI ablation. I ticked 'buy on internet' because I shall need to when my stash runs out.

I will write to the Endo & his colleague (who I prefer) and request a prescription but the fact he was content to leave my FT3 below range & wouldn't test rT³ makes me doubt he will oblige.

Any of the symptoms I complain of like shortness of breath, palpitations, fatigue etc. he comments "you had that prior to surgery". Well yes, my thyroid wasn't functioning properly even though the cancer was cut out. I lost 13kg weight, had antibodies & experienced spiralling hyper & hypo (Hashimotos?) for months prior to seeing the surgeon but he "didn't feel my problems were all thyroid related" either.

Hansaplatz profile image
Hansaplatz

I managed to try 75mcg T4 with 10mcg T3 on the NHS, with the T3 on that prescribed by NHS, but I found it wasn't enough. They wouldn't consider any more n NHS though, because my endo viewed it as 'dangerous' and my GP deferred to the endo as more experienced. :/

I eventually had resorted to privately buying T3 from abroad so I could go T3 only for several months which made me feel a fair bit better. I tried going back on T4+T3 when my GP's wanted to test me again, so they'd not know about my forray into T3 only without them, which made me feel awful once I'd been back on T4 for a week so I stopped the T4 again once the test was done.

Been back on T3 for about 6 weeks following that, starting to feel improved slowly, and just saw Dr S, hopeful I might finally get more T3 on the NHS if my GP listens to him. A big if. It really does seem to depend on if your GP is comfortable prescribing it or if a specialist/private doctor can convince them to if not.

Zephyrbear profile image
Zephyrbear

Like KLR22, I was prescribed 10mcg T3 3 times daily and had my T4 reduced from 100mcg/day to just 25mcg/day by the endo and my GP has continued to supply the prescription since then, although I remain under the endo's supervision. I would hate to think what the GP's would do were he to give that supervising role up... Given the cost of it here, at a staggering £52 for 28 20mcg tabs, I think they would probably find a very quick reason to take me off it and condemn me back to the useless T4. Why is the NHS content to deal with just Mercury Pharma when T3 can be sourced for just a couple of Euros in Greece and France???

Toptomato profile image
Toptomato

My GP was adamant I didn't need T3, saying that the Levo was fine. She completely rubbished all my symptoms, so I got a private endo, who recommended T3 and Levo combined. GP agreed to prescribe to his recommendation, so guess I should be grateful for that. Feeling a bit better, but dose is still being adjusted, so time will tell.

Totoro profile image
Totoro

I am on 90mcg T3 only and am much improved but still not "cured". I suspect my body needs time to heal.

It's taken me 3 years from diagnosis to get to this point and a lot of finding out my own information and fighting. GPs don't know about T3 because they haven't been trained in it and the first two endos I saw didn't tell me it existed either. It is poor patient care.

T3 is a lifesaver for me. A poster on this forum that the only way doctors were going to get her to give up T3 was to "prise it out of her cold dead hands". That's how I feel. I had 17 years of being diagnosed as depressed and anti depressants never working. Then I finally got diagnosed as hypo. T4 helped more than any anti depressant every did but I still had many symptoms. T3 has taken away most of my symptoms. I just have to build up my mental and physical stamina again.

I voted "NHS endo prescribed it" but actually my NHS GP does the prescription because my endo has authorised it.

T3 hugs to all!

Totoro x

merrygo profile image
merrygo

After years hovering around Thyroid UK and elsewhere, gathering information in my more lucid moments and in 2005 actually asking my GP to test my T3 (test results back then: TSH 1.00, Free T3 3.8) GP said everything was normal so I put the whole T3 thing to the back of my mind... until recently.

Because however I adjust my levothyroxine I am always over or under medicated, even alternating 100 / 125 per day (used to be 150/175 but my need has dropped as circulating oestrogen diminishes) and other various regimes over the week / month - I've tried them all and still lurch from hypo / hyper and am never stable. (GP trusts me to adjust my dose because after being on 200mcg for years many years ago I was mistakenly diagnosed bipolar... till after a couple of weeks feeling increasingly weird on lithium I realised I was actually overmedicated and hyperthyroid, not bipolar - Hence shamefaced GP who trusts me to adjust my dose.)

Anyway, I now feel I have enough information and understanding of T3 to give it a go and have finally taken the plunge and ordered from an online Pharmacy in Mexico. Luckily for me there were some excellent reviews from hypothyroid patients in the UK who frequent health forums here who had left their comments and were able to vouch for the quality etc so I knew I was in the right place. (I hope I'm not transgressing the forum rules here.) I've ordered 25mcg tablets and intend to cut them up to start with and see how I get on. Won't arrive for a few weeks but when they do I'll let you know how I get on. Thanks for making so much information freely available (and searchable...) and for sharing your experiences. It's given me the confidence to give T3 a try in the hope of a better quality of life. I'm not sure whether to give up thyroxine altogether and try T3 alone or try the combined approach, but I've a few weeks to learn more before I decide.

Jane104 profile image
Jane104

I haven't answered this poll, as although I think I need T3, I'm currently taking it in the form of NDT. T3 was prescribed by endo on NHS but I can't tolerate Mercury Pharma tablets. They won't prescribe NDT so I'm buying it on the internet.

SilkyJ profile image
SilkyJ

Not sure how to vote. I take 180-200 mcg T3. I get 100 mcg from my endo and I buy the extra 80+ mcg T3 of my dose off the internet. He is planning to reduce the 100 mcg further so that my TSH is 'in range'. :( What planet is he on! Anyway, this will mean I will have to source more off the internet as I cannot function on less than 180-200 mcg T3 p/d.

PinkNinja profile image
PinkNinja in reply to SilkyJ

I would vote 'I purchase from the internet/abroad' as you are in fact having to do this because your doctor seems to have little knowledge of T3 dosing.

TSH was never intended to be used for titrating dosages of thyroid medication because it becomes an inaccurate indication of thyroid status once you are hypothyroid; even more so once you start taking anything containing t3.

SilkyJ profile image
SilkyJ in reply to PinkNinja

Thanks Carolyn. I did think that but was waiting confirmation. I have now voted as you suggested.

And I totally agree with your comment/thoughts below. x

PinkNinja profile image
PinkNinja

Just a thought...

There are many people out there who would possibly benefit from T3 but aren't getting it because it isn't being prescribed on the NHS. They may want to get it but don't want to go down the route of self-medication or even have the funds to do this or accept a private prescription. Just something to point out to the peeps when analysing the results. I'm sure that has already been thought of and will be put together with the other polls. Just thought I'd throw that in there just in case :)

Gosh, I'm a pain aren't I :D