Hi all, Is anyone on T3 only?

I had a thyroidectomy in 2006, following a stormy year of carbimazole not helping. I was then on T4 for 6 years, mostly feeling awful. Most pronounced was constant muscle aches and joint pains. I started T4 T3 combined last July, followed by Armour thyroid. None of these helped. I started T3 only this week. I am under care of a doc in Birmingham. Any advice on what to expect much appreciated. So far, I feel better but am on only 20mcg , gradually to be increased. Feel great after 20 mins but a couple of hours later am aching again. Is this normal?

41 Replies

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  • I am on Armour rather than T3 only, but there are quite a few here on T3 only, so hopefully they will be along soon :) Are you with Dr S (we don't use doc's real names her so as not to get the good one into trouble)?

    On lower doses of Armour, I could feel the T3 element running out before my next dose was due. Sounds like this might be what is happening to you, and that you will improve on a higher dose :) xx

  • Many thanks Clarebear, I am trying to reply but my iPad won't pick up on the "reply to this". What am I doing wrong?

  • Many thanks Clarebear, I am trying to reply but my iPad won't pick up on the "reply to this". What am I doing wrong?

  • My ipad won't either - not sure why. I will report it to Health Unlocked who host this site.

  • Yes I am. Still not on the optimum dosage and do struggle with timings though. The best bit is that my brain fog is disappearing, am getting very assertive and currently drafting some missives aimed at the incompetent medical establishment!

    Sometimes I still need to have a lie down due to dizziness and nausea. Fortunately I've never suffered with aches and pains although for donkeys years have been taking glucosamine sulphate.

    Are you splitting your 20mcg?

  • Yes, I am splitting the dose all sorts of ways, either three pieces or crumbs. Why is there only one strength for this? Crazy.

    Many thanks for the links. Shall check them out now.

  • I'm on a combination of T4 and T3 and changing to take more T3, less T4, hopefully getting to try T3 only.

    T3 is also available in 5mcg pills.

    It wasn't in the endocrinologists medicine prescription book (two endos checked and they said they use on particular type/brand of prescription book and the 5mcg pills aren't in that but there is another similar book and it might be in that) but when the prescription said 75mcg T3 I got it in 20mcg and 5mcg from the chemist.

    I just pick mine up from Boots. I've had two different types of 5mcg pills, slightly different sizes (more filler in one type). These 5mcg make it great for getting the right dose because it's easy then to cut in half to 2.5mcg.3

    Best of luck on how T3 works out for you x

  • Hi Totoro,

    does the chemist give you the 5mcg by their own accord or is it the GP prescribing something different?

    what brand are the 5mcg tablets?

    thank you in advance, I am going to see if I can get these too.

  • US brands Cytomel and Paddock both do 5mcg liothyronine tablets that your pharmacy can obtain through their importer. I think you'll need a 'named patient basis' prescription if on NHS.

  • I've had both those brands in 5mcg for T3 recently without the prescription having any mention of 'named patient basis' (though would I know if it had?)

  • No, the prescription will just say the medicine and dose etc as usual. Named patient basis simply means that the medicine importing company needs a letter of confirmation from your GP to say that he's prescribing this medication for hypothyroidism. This letter goes from GP to pharmacy who then pass it to the importing company, so you may never have even seen it.

    More info here for anyone interested

    thyroiduk.org.uk/tuk/treatm...

  • Also, this letter is only required once, for as long as you keep getting it prescribed continuously. It's no big deal really, but can result in a delay of the first prescription being fulfilled if the GP hasn't provided the letter.

  • Would this all go on without a patient knowing? I've never had a delay on getting my medicine, except in that it was special order to get in stock from the supplier, which is delay that keeps happening.

  • Oh yes it certainly could go on without the patient knowing. It's a much more common thing these days, so GPs are possibly more clued up about it and it just happens quickly and easily.

    A few years ago, when I was first prescribed desiccated thyroid on NHS, it had to be done this way and it took ages to happen because my GP didn't know he was supposed to do it, and even when told, didn't realise that I couldn't have the medication until he wrote the letter.

    It might even be that some importers don't actually bother asking for the letter anymore.

    And yes, the special order delay is because your pharmacy has to get it from whichever company they use to obtain imported medicines (instead of the usual supplier that brings the UK manufactured medicines).

  • thanks RA

  • I should add in that it depends what your GP writes on the prescription. I've been having 5mcg prescribed by endo, who upped it recently to 5mcg twice a day. For some unknown reason (cost related maybe?) when my GP wrote the new prescription they didn't put 5mcg, twice daily, they put 20mcg, quartered, twice daily. I almost ran out of tablets since my first choice didn't have the 5mcg as expected, and when I found a pharmacy with 5mcg they only wanted to give me 20mcg exactly as the GP had written, but fortunately gave me 10 days in 5mcg so I'd not run out whilst they special ordered the 20mcg ones.

    Also, I should add if brands make a difference - getting them from Boots or Llyods seems to be the liothyronine by Paddock for the 5mcg tablets, and from Superdrug they get Cytomel instea. My personal preference is for Cytomel, felt better on those, less afternoon sleepiness with them when I was on the 5mcg dose, but can never get them with my hospital endo direct prescription since it only can be processed onsite at their Lllyods.

  • thanks

  • I think it was when my endo prescribed 75mcg T3 and must have written 25mcg x three times a day on the prescription.

    Then when I picked up the prescription I was given a mixture of 20mcg and 5mcg.

    Since they were so useful (particularly when I was slowly increasing my dose) I asked for them specifically next time. On my prescription it says (for example)

    20mcg x 112

    5mcg x 112

    I've had them prescribed from an endo and a GP, no problem getting them, no named patient basis mentioned.

    I don't know what the brand is as they just come in a chemist bottle. There are definitely two different brands available as one brand was smaller and the other was a much bigger one.

    Hopefully you shouldn't have a problem getting them too.

  • thanks

  • I had saved this about T3 and am not sure how old the information is but might be a little helpful.

    There appears to be a significant variation in the apparent strength between the various brands of T3 medication. This is probably due to differences in absorption in the body rather than differences in the amount of hormone in the tablet. A few brands that we know of and comments on them are:-

    Cytomel made by King Pharmaceuticals. This is the main branded T3 drug in the USA against which others are compared. It is available in 5mcg, 25mcg and 50mcg doses (splitting the 50mcg tablets can be a way of saving money).

    Generic Cytomel by Paddock. The reports from people on this generic are that they need more than when they were on branded Cytomel. One report indicated a 15% difference.

    Generic Cytomel by Mylan, again reports are that it is subjectively weaker than King Pharmacuiticals brand. (updated 10/10)

    Cynomel (Spanish spelling) from Mexico. Manufactured by Grossman Laboratories and available for private importation from some mail order pharmacies. This is very competitively priced and is reported to be as strong as Branded Cytomel but at a fraction of the price. The 25mcg tablets are scored in half and can be quartered with care. This is our "best buy" recommendation

    Cynomel from Aventis France. Another brand of cynomel. This is reportedly weaker than the branded Cytomel but is several times the price or Grossman Cytomel. It can be good for starting off on as the tablets are larger than the Grossman and are scored in quarters. It is expensive to remain on long term.

    Tertroxin (UK and Australia). This is available in 20mcg tablets. It is reportedly weaker than branded Cytomel or Grossman Cynomel

    Generic T3 made by Goldshield, has had good reports from one of our readers. It is not as cheap as the Grossman but worked well for her.

  • Hi Heloise, many thanks. That is very interesting. Have a feeling I may be on Grossman tabs, as mine are 25mcg and scored. They are via NHS so probably they have gone for a competitive price. They are not in branded box but I shall ask next time I go. I suppose it is better to stay on the same brand unless they are not working well. Shall have to wait and see how I go.

  • How easy is it to buy the Grossman Cytomel from the States? I have a friend in NY who could send me some. Are they prescription only ??

  • The T3 is by prescription in the states, ging.

  • Thankyou

  • Hi Totoro,

    Many thanks for your help. Will keep hoping for a good result!

    Best x

  • It is probably too early to feel the full benefit of T3. As you say you are only on 20mcg to be increased gradually, so I am sure the improvement will come when you are on enough to suit your body.

    This is a link in case you haven't seen it before, some of the links don't work as it is archived and if you cursor down to the question November 9, 2005

    web.archive.org/web/2010122...

    Dr Lowe also recommended nutritional supplements that work synergistically with thyroid hormones.

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

  • Well I have been on T3 one way or another for many months but always combined with T4. Am hoping it will prove to be the T4 which has been my problem.

    I shall check out the nutritional supplements but already take many. One can always add more and hope!

  • I was initially on T4 alone - felt even more ill. Felt improvement when T3 was added. Even better on T3 alone but still had some symptoms. Now on dessicated thyroid medication and am well.

  • Hi Hennerton,

    I am on T3 only and have been since last May. I was on NDT before.

    I feel the best I ever been on T3 only, I worked up my way to 175mcg but now my NHS endo has cut it down to 150mcg, am 'battling' with him to have it back up to 175mcg.

    Anyway, I take it all at once when I wake up and this is the way it works best for me, though we are all different and many get on really well with multi-dosing.

    what you are experiencing is normal and hopefully you'll feel better with each increase.

    Best wishes

    x

  • Hi Nobodysdriving,

    Many thanks for your reply. Do you mind telling me a bit more of your history? Have you had a thyroidectomy because I do feel this is the big problem for me, not having all the other components that we know, and do not know about a normal thyroid.

    I have never really felt normal since the op in 2006 and everything became much worse in July 2011, when I had a urinary tract infection that would not clear up and lots of different antibiotics. Just seemed to push me over the edge and leave me with more muscle and joint pain than previously.

    Do you know if body weight has any bearing on the amount of T3 one needs as I am trying to gauge how much I will eventually end up on? I am very thin and got thinner recently when taking increasing doses of Armour under Dr. S. Then seemed to get toxic and asked to try T3 only. Did you slowly increase the dose like I am?

    Many thanks. Look forward to hearing from you,

    x

  • Hi Nobody'sdriving,

    Sorry, I am new to this and have just found your long history in "about me", so no need to reply unless you have any other great bits of advice. Many thanks xx

  • I take 70mcg of t3 all at once at bedtime and sleep all night and feel pretty good most days. Occasionally I need a wee nap in the afternoon so I just do it.

    Jo xx

  • that's good :)

    I was at work all day yesterday so was unable to reply x

  • T3 effects last a couple of hours, so you have to take multiple doses of it around the day to keep it working.

  • There are people who take it all in one go and are really well. I am also T3 only and doing well but not in the way you are suggesting. So what has brought you to this forum with your T3 ideas ??? I'm interested....

  • People who are able to convert T4 from T3 will still go well, but if the conversion is blocked (and the common causes are stress, hypoglycemia, selenium deficiency) than T4 alone can act as an "anti-thyroid hormone". You may want to check this interview of Dr. Raymond Peat, especially the first question and answer.

    PS. Can you recommend me a good T3 product? I haven't find a reliable one as the one produced by Grossman in Mexico seems the only one that works well.

    thyroid-info.com/articles/r...

  • Yes there are lots of informative articles about T3. We are not allowed to mention the names of suppliers on the forum. I live in Crete so it's a different ball game here :-)

  • Can you pm me?

  • Sorry but I am loathe to help someone with T3 that I do not know. It is a big responsibility and not one I am prepared to take. Cannot read anything about you anywhere and lots of people mis use T3. I do not want to be responsible for anything like that....

  • I'm not looking for help about T3, just if you know a reliable source of it. You're not responsible of anything. I'm a thyroid sufferer and that's the help from other people... do whatever you like... you can't read other things because I joined now this community

  • No answers from anyone on t3 only. Any one out there . I am on second week of t3 cytomile 20 mcg. came of levothyroid sodium my self, put on 4 stone and aches and pains every where, poisoned my body i was bedridden, new doctor. So fingers crossed :)

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