No T3 products working? : It is a shame, once... - Thyroid UK

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No T3 products working?

Bloomberg5593 profile image
47 Replies

It is a shame, once grossman cytomel is no longer available, there isn't any product we can trust. Lots of people on t3 therapy can't do it anymore, and people who can't tolerate t4 just have to go to hell cause of this. This is absurd. We should start a petition and riot against this.

PS: don't say X or Y products do work, because none really dose like the mexican one. if you can't judge the potency of a product, this isn't a problem of ours.

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Bloomberg5593 profile image
Bloomberg5593
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47 Replies
Clutter profile image
Clutter

Bloomberg, I've not used Grossman Cynomel. Tiromel and UK Liothyronine have worked fine for me and other members like the Greek Uni-Pharma. Last I heard Grossman Cynomel was expected be available in November. Have you tried USA Cytomel?

Bloomberg5593 profile image
Bloomberg5593 in reply toClutter

No, i'm not in the usa, but people who didn't use mexican ones can't tell the ones are using are working. i have used tiromel and sanofi aventis t3 and they're so weak i can't even feel them. if the product is reliable, a dose of 1-5mcg should be enough for you to feel it, because the thyroid gland produces about 4mcg per hour.

Clutter profile image
Clutter in reply toBloomberg5593

Bloomberg, I have no thyroid and was totally dependent on Liothyronine for 3 months and subsequently Tiromel for 3 months. Both worked well for me, suppressing TSH. 1-5mcg is an infinitesimal dose equivalent to 3-15mcg T4. I doubt many would 'feel' it.

Bloomberg5593 profile image
Bloomberg5593 in reply toClutter

people were feeling it with mexican products. if the thyroid produces 4mcg per hour, taking 10 or 20 mcg is simply unphysiological, and can lead to both excess adrenaline or most of it can be inactivated by the liver

galathea profile image
galathea in reply toBloomberg5593

This could be the reason so many of us prefer NDT to the synthetics. There was an interesting article written. Will add the link when I find it, which said the hormones in NDT are bound, not free so they don't hit your system in one big dollop. I used to multi dose with t3 but I take all my NDT now in one go, last thing at night and it just feels smoother than the synthetics.

Xx g

vitaminkgirl profile image
vitaminkgirl in reply togalathea

Really? I've just ordered some NDT to try. I'm having horrible problems with adrenaline at the moment as (I think) other brands of T3 are hitting me too fast.

Do you have any more info about this? I think I need something slow release!

Bloomberg5593 profile image
Bloomberg5593 in reply tovitaminkgirl

NDT to me was equal to a t3+t4 combo. there isn't much difference. those concepts are just cultura cliches, there aren't scientific basis to sustain those concepts, sorry

galathea profile image
galathea in reply toBloomberg5593

Yep, I survived ok on a t3/t4 combo for quite a few years but I now use NDT, because it avoids highs and lows. I collect my prescription every 2 months from my doc for t4/t4 although I don't take it to the chemist. The reason I keep it going, is because if I ever can't get hold of NDT I know I can exist reasonably well on the combo.

Xg

galathea profile image
galathea in reply tovitaminkgirl

Here is the article.... thyroid-s.com/natural-desic...

Xx

vitaminkgirl profile image
vitaminkgirl in reply togalathea

Thanks! Fascinating stuff!

in reply tovitaminkgirl

the Thyroid UK questionnaire that just closed (on Sunday 9 Aug 2015) had a question about 'have you tried slow release T3'. Until reading the questionnaire I had never heard of such a thing - maybe it exists, maybe it's a unicorn. Do others have any information? Slow release T3 would, obviously, be much easier to dose with than ordinary T3, which is short-lived.

vitaminkgirl profile image
vitaminkgirl in reply to

Thank you humphrey. I think slow release T3 would really help me, if I'm able to get hold of some from somewhere!

in reply tovitaminkgirl

a quick rummage on Google threw up this: recoveringwitht3.com/blog/s...

from the 'Recovering with T3' people. You might want to follow it, or another link and see where it takes you. Paul Robinson is a name that rings a bell re T3 therapy.

faith63 profile image
faith63 in reply togalathea

galathea..t3 does not hit the cells all at once and can be taken once a day. It was manufactured to be taken that way. Dr. Lowe used it for decades, to "cure" thyroid hormone resistant fibromyalgia patients. I don't feel a "blast" and a let down. It lasts at the cellular level for 3 days.

Some of us on here can't tolerate ndt. It flares up my autoimmune thyroid terribly and some can't tolerate or convert the t4 in it.

Bloomberg5593 profile image
Bloomberg5593 in reply tofaith63

not true. T3 hits the cells in 1 hour range of time, that is the lasting effect. that's why t3 should be taken multiple times a day.

faith63 profile image
faith63 in reply toBloomberg5593

That's not what the manufacturer says or Dr. Lowe found. It's not what i do. Dr. Lowe had no results for his patients, unless the t3 was taken once a day, to saturate the cells.

I don't know how you can say, that this is untrue.

Clutter profile image
Clutter in reply toBloomberg5593

Bloomberg, If the thyroid produced 4mcg T3 per hour 10 or 20mcg daily wouldn't be enough would it?

Estimates of average normal secretion for euthyroid humans are 94-110 µg T4 and 10-22 µg T3 daily (308).

thyroidmanager.org/chapter/...

Those estimates are for healthy people. The level of thyroid function (if any), degree of hypothyroidism and degree of conversion of T4 to T3 will determine how much replacement T4, T3 or T4 & T3 is required.

faith63 profile image
faith63 in reply toClutter

Clutter..the pharmacy where i got my Grossman Cynomel, has emailed me last week, to tell me that Grossman has stopped production indefinitely..no date set.

Clutter profile image
Clutter in reply tofaith63

Faith, thanks for letting me know. That is rotten news for many members.

faith63 profile image
faith63 in reply toClutter

I know!!! Did you find the Tiromel and the other one similar I have about 175 pills left. Thank goodness i bought extra.

Clutter profile image
Clutter in reply tofaith63

Faith, I've only used UK generic Liothyronine and Tiromel. Mcg for mcg I find them the same and had no problems when I switched back to Tiromel for a week when I couldn't be bothered to pick up Liothyronine from the pharmacy.

faith63 profile image
faith63 in reply toClutter

Thank you. Do you find Tiromel less expensive or?

Clutter profile image
Clutter in reply tofaith63

Faith, There are prescription cost exemptions for hypothyroid patients but 100 x 25mcg Tiromel is €2 or €3 OTC in Turkey and the NHS pays £125-£150 for 28 x 20mcg generic Liothyronine.

I for one will be so glad when Cynomel becomes available. There has been a noticeable deterioration in my health due to taking Tiromel.

Cee123 profile image
Cee123 in reply to

I feel the same 😔 felt great on Cynomel from Mexico, tried Unipharma T3 which was ok but not great but cant source that anymore so the only T3 meds I could fibs was Tiromel which I've been on for a month and feel so hypo 😔

faith63 profile image
faith63 in reply toCee123

Then raise it.

Cee123 profile image
Cee123 in reply tofaith63

I've tried raising but I get the shakes, I've tried lowering the dose and I feel much worse!! I'm on 125mcg a day and that appears to be my stable dose on Tiromel although I still feel Like crap??!!

Hillwoman profile image
Hillwoman

Tomorrow will be the first day I start a new brand of T3. I'm now on a very high dose (all at once, according to the late Dr Lowe's protocol) because of cellular resistance. I've been taking Mexican Cynomel for about 2 years and have found it about the same potency as US branded Cytomel. When US Cytomel became too expensive around 2008, I switched to Paddock liothyronine for a few years, but the potency was lower and seemed inconsistent between batches. Tomorrow I have to choose between Tiromel and UK liothyronine (I received a small batch of the latter as a gift from a patient who no longer wanted it).

The availability date for Mexican Cynomel keeps getting pushed back. You have to wonder why, but I just hope it does come back at some point. I remember a discussion on Dr Lowe's website more than 10 years ago lamenting the fact that Mexican T3 seemed to have become permanently unavailable. Clearly, a long hiatus in manufacture is nothing new.

Bloomberg5593 profile image
Bloomberg5593 in reply toHillwoman

i hope so! but i've read the company was shutdown by the govt'.

Hillwoman profile image
Hillwoman in reply toBloomberg5593

Can you remember where you read this? I'd be very interested to have a look.

in reply toHillwoman

That was on the Ray Peat Forum but I wouldn't take it as gospel as there was nothing to back it up.

Clutter profile image
Clutter in reply toHillwoman

Hillwoman, I heard the lab moved premises and the delay in production is due to awaiting lab accreditation. In May the company said they expected to resume supply in November.

faith63 profile image
faith63 in reply toHillwoman

My pharmacy has let me know that Grossman is closed indefinitely..no start date given.

dizzy864 profile image
dizzy864

I've been on liothronine ( uk prescription ) for the past 11 years. I started on 1 x 20mg tab a day and had "peaks and troughs" in how I felt. Great for 6 or 7 hours after taking tablet but down hill fast after that. Life was all about waiting for my next "fix". Three years later, a helpful endo increased it to three tablets a day for a four month trial period. I was well for the first time in over ten years.

My four month follow up visit, I saw a different endo at the same hospital. (Nottingham ) He was very anti T3 and told me to come off it all together and wrote to my GP saying that. I've had an 8 year battle with various GPS as I've repeatedly refused to reduce let alone give it up all together.

I remained well until last October when I started having a lot of thyroid issues again.

I saw an endo last week. He confirmed what I'd come to believe. I was ill Oct - February because my lio tablets were too weak. I was ordered to reduce and became really ill after 3 weeks and then went back up. I had a couple of months where I was not 100% but a lot better than I had been. Then I became very hyper as the tablets were too strong. Another GP then ordered me to reduce lio again. Unfortunately, this co-insided with a new batch of lio which was much weaker. I was really ill this time after two and a half weeks and went back up again.

I expected the endo to tell me that I was wrong that the strength of lio does not vary this much but he did not. He told me that I was right. He pointed out that the strength of lio legally can vary from 10% below strength to 10% above strength. This means that we can have a 20 % drop ( or rise ) in meds from one day to the next.

He stated that he had seen many patients who had experienced the same problem.

I'd actually read that the legal limit was 12%.

The endo also stated that medication should be varied by only about 8% at a time if reducing or increasing.

If varying strengths is making people ill surely it is wrong and the practice should be stopped.

For people trying lio for the first time, how can they know if it is right for them or not if it may be very weak when they first try it or very strong?

Our body's are not built to take constant change in meds, we need regular doses.

Now the problem is lio is not available at all in my area ( Lincoln ) and I'm yet again worried about when I will be able to get hold of my prescription.

This is not good enough. I've been trying to find out who I can write to about the issues with lio. I've not been able to find out anything on line about who one can raise these issues with. The NHS web site doesn't offer any help.

I think an on line petition would be brilliant.

Clutter profile image
Clutter in reply todizzy864

Dizzy, I think the potency variations are likely to be between batches rather than between individual tablets in a pot or batch. The 90% to 110% variance could be very noticeable when changing batches though.

Helvella posted this last year healthunlocked.com/thyroidu...

dizzy864 profile image
dizzy864 in reply toClutter

Yes, I was referring to finishing one batch on one day and starting a new batch the following day as being up to 20% ( possibly 24% ) more or less.

I think it unlikely that individual tablets would vary unless there was a serious manufacturing problem.

in reply todizzy864

It is easy to start online petitions these days, Dizzy. I'd avoid the Government ones. There was a thyroid one (for better research into treatments) which only closed a little while ago. You have to reach a certain number of signatures before anything happens with it (amazingly, we struggled with that!) and then they can just say 'yeah, we though about it and decided to do nothing'. 38 Degrees or Change.org both have better outreach. Or there's Avaaz or SumOfUs (both American).

There's a NHS ombudsman one can complain to : ombudsman.org.uk/make-a-com...

and there's Patient Opinion which posts short cases of bad (and good) treatment: patientopinion.org.uk/

or you can write to your MP - several of us have. Frankly it doesn't seem to have done much good so far, but we have to keep on keeping on. Find out who your MP is and get an email address for him/her here: parliament.uk/get-involved/...

Cee123 profile image
Cee123

Hi I was taking Mexican Cynomel which was great until I couldn't buy it anymore. Then I tried Unipharma T3 which was ok but not great. The place I bought that stopped selling it so the only T3 meds I could find for a decent price was Tiromel bought from Cyprus.....which is awful! I feel really hypo on it even though though I'm on 125mcg a day.

Please if anyone knows where I can buy Cynomel, liothyronin, Unipharma T3 etc please can you private message me? I'm running out of Tiromel but don't really want to order more of it unless I'm desperate. Thank you. X

Hillwoman profile image
Hillwoman in reply toCee123

If you find out, please, do let me know. I will have to use my store of Tiromel at some point, but from other people's experiences on the forum, I am not looking forward to it.

How is it that the potency of prescribed T3 can officially be allowed to vary so much in the UK? I don't get it prescribed, but I do have a small supply of the Mercury/NHS T3. Accurate, consistent dosing is crucial, especially if you are on a T3-only treatment protocol.

gactor profile image
gactor

Just to put it out there: I have had Hashimotos for many years and was taking both T3 (4, 5mg tablets in two doses/day) and Armour Thyroid (1 60mg before breakfast and 1 mid-afternoon). Doc and I believe I don't make T4 from T3, in addition to insufficient natural thyroid activity. Haven't been doing so well past year or so (have several medical conditions) and this past January, stopped supplementing with T3. Felt better (and blood free T3 levels dropped only slightly). In July, I switched to Nature-throid instead of Armour - mood was better (dose that works for me is 65mg before breakfast and 97.5 mg mid-afternoon). So maybe doing this type of test is useful for some people.

faith63 profile image
faith63 in reply togactor

gactor..you don't make t4 from t3, but t3 from t4..just so you know.

Klagh profile image
Klagh in reply togactor

Gactor,

How did you ease out of taking the T3? I'm taking T3 (35 mcg. daily: 15 mcg 9 a.m., 10 mcg. noon, 10 mcg. 3 p.m.) I want to quit the T3 and start taking WP Thyroid.

I don't want to become depressed as I stop taking the T3.

Thanks.

gactor profile image
gactor in reply toKlagh

Hi, Klagh,

I just decreased - by 1 pill every couple of days - the amount I was taking (less than yours!). I always decrease/increase meds slowly instead of abruptly, so the body can get used to the change a bit better. Didn't experience any physical or mental aftereffects that I'm aware of. You could start by decreasing 1 pill in AM, wait couple days, then decrease 1 in PM, wait couple days, then 1 at noon; and if you feel anything negative at any of the decreases, then just hold where you are for 3-5 days before continuing? And definitely alternate how you decrease.

I haven't heard of someone taking T3 3x/day - that makes it hard to eat anything with calcium, magnesium, zinc (since those elements can interfere with thyroid hormone uptake, so they are to be avoided 2-3 hours before/after thyroid dose - and I've noticed for myself it's true).

Good luck!

Klagh profile image
Klagh in reply togactor

Thanks Gactor!

Mellybedhead profile image
Mellybedhead

I am one of the T3 only people and did well on the Mexican T3. Went down hill on the same dose of Tiromel but recovered for a while after upping the dose a little. I've now started to "go off" again! It seems likely to be T3 related, could be adrenal?? I've resisted dabbling and have ordered a Blue Horizon blood test kit. It looks like I'm not alone with this struggle though!

galathea profile image
galathea

Years ago I bought t3 from India. I can't remember the address although it was online, the t3 was triangular and bright pink. I remember it worked fine.... No one ever mentions Indian t3, but it definitely exists.

Hillwoman profile image
Hillwoman in reply togalathea

Years ago, I got hold of some Iranian T3, which was posted to me from Ukraine, ordered from an iffy-looking Canadian website. What can I say... I was desperate at the time! The T3 worked okay though. I'd completely forgotten about it until I saw your comment on Indian T3.

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