Earlier this year I had problems with T3 batches and ordered cynomel from Mexico. Having taking the cynomel for a couple of months, my GP has said my T3 is too high and I am in danger of a thyroid storm if I continue. I wonder whether a) the purer Mexican T3 has caused this raise in T3 coupled with the fact that cynomel is 5mcg more than the NHS 20 mcg tablet, will have caused this increase. Now I have a dilemma, I have ordered more NHS T3 and all three pots have come back as the 81377 batch that people had problems with earlier this year. My chemist says the pharma company are still giving these batches out and he doesn't think he can get different ones. I know this batch has been yellow carded but how does that affect the manufacturing as it doesn't seem to have been stopped. Also, not sure on the yellowcard site, how to get the exact list of yellow carded T3 batches this year. Any comments on any of these issues would be helpful as I need to address high T3 immediately without stopping T3 altogether (T3 has made my life much better!). Thank you!
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billie_di
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Hi, How are you feeling? When Dr. Lowe prescribed Cynomel for my daughter 11 years ago he told her to take as much as she felt she needed and she would know as soon as she was taking too much as hyper symptoms would kick in. She gradually went as high as 200 mcg, before this happened, then slowly went back to 125 mcg guided always by her symptoms. She is now on 125 mcg in winter and 100 mcg in summer. I'm not saying this is what you should do, but Dr. Lowe and others believe that the panic about T3 is not justified. This might be of interest to you - in particular the question dated 24th Sept. 2002.web.archive.org/web/2010122...
Whatever you decide to do, and I am not and endo, I would suggest that Cynomel is the preferred option as there appears to be evidence that the batch of NHS T3 you refer to should not be used, and what good can that be to anyone? It sounds as though the doctor and the pharmacist need to have a little chat to one another.
Thank you for your advice Jane. I have undoubtedly felt better on cynomel but wonder why my T3 is raised and TSH suppressed suddenly (so my doctor is now talking about 'thyroid storms').
If you are taking T3 alone, that is the usual blood test results - high T3 and low TSH. The question you should ask is, 'how do you feel' and if fine that is the dose for you. If you are suffering symptoms due to overstimulation, you would certainly stop. It is easy to miss out the next day's dose and then reduce slightly till palipitations, racing heart, too hot etc.
The thyroid gland blood tests were introduced with levothyroxine as it was thought this would benefit patients (it doesn't in a lot of cases). With T3 and NDT the blood levels are not the same. NDT contains T4, T3, T2, T1 etc and obviously T3 is T3 alone.
This is an extract from Dr Lowe on T3:-
Dangers of T3
The endocrinology specialty has long opposed the use of products that contain T3. The basis of its opposition, so it claims, is the resulting brief peak blood level of T3. Members of the specialty glibly state that the peak level is in the "thyrotoxic range"[84,p.1225] and that this peak level causes heart palpitations that trouble patients. They further state that the peak level may adversely affect the heart. But, these members resound, by using Synthroid patients can avoid these problems.
The specialty’s claim that T3 causes these problems is a mere presumption; it is contradicted by the reports of researchers with extensive clinical experience with T3. Psychiatric researchers whose patients use T3 point out that it is generally well-tolerated.[35] The experience of my research group agrees with this observation. For some fifteen years, our treatment team has worked directly with hundreds of patients using combined T4/T3 products or T3 alone. Our observations during that time dispute the warning that palpitations are a problem for patients who use T3-containing products. Palpitations in these patients are exceedingly rare. When a patient has experienced palpitations, they have been minor and of little or no concern to the patient. The palpitations have also been of no clinical significance. It’s noteworthy that the researchers of the four studies, as well as those of three other studies comparing the effectiveness of T4 and T4/T3-replacement, didn’t report that their study patients were troubled by palpitations.[1][2][3][4][5][6][7]
I can find no study that members of the specialty have conducted confirming its prediction of adverse effects from T3. Only last year, endocrinologists Kaplan, Sarne, and Schneider wrote: ". . . the possible long-term risks of elevated or fluctuating T3 levels have not been evaluated."[19,p.4541]
The problem I'm facing is that my TSH is very low and my T3 is high. On occasion, I feel that my heart is pounding or I feel anxious. Other than these symptoms every once in a while, I don't feel overstimulated. But because of these symptoms and the lab results, my doctor wants to take me totally off T3 and send me to a local endocrinologist. I've inquired at the endocrinologist's office and learned that he doesn't believe in using Cytomel or your protocol. What can I do? There must be other options than just taking the Cytomel away completely. I feel good now and live an active lifestyle. I don't want that taken away. Please help. I'm desperate not to go back to the way I was before.
Dr. Lowe: The improvements you describe are typical of what we hear from patients using high-enough doses of Cytomel. Because of your improvements, and because your symptoms of possible overstimulation are occasional, taking you completely off Cytomel seems to me radically improper.
For someone taking 100 mcg of T3, we expect your pattern of lab results—a low TSH and high T3. However, your TSH and T3 levels are irrelevant to whether you're overstimulated or not. Two studies we just completed confirm other researchers findings: these tests are not reliable gauges of a patient's metabolic status. Many patients taking T3 have TSH and T3 levels like yours but still have severely low metabolic rates. Their metabolic rates become normal only when they increase their dosages further. Their metabolic rates become normal and they have no detectable overstimulation.
Hi Shaws! Thank you, this is very illuminating. You know, I have felt absolutely fine on my present dose. I have been losing a little weight recently but then I have improved my diet and started doing a little more exercise too (and also been ill with tonsillitis several times and had a breast op in the same time) so I guess I would lose a little weight. However, I am not extra clammy or anxious, nor have I had palpitations. My diet change has involved more supps that help T4-T3 conversion Plus I am having regular juiced drinks plus seeds and nuts and flax seeds AND I guess if cytomel IS supposed to be more pure than the NHS version, well then maybe it will have increased blood levels. I, however, feel fine. I was thinking of decreasing the cynomel slightly...now not so sure! My doc wants to see me for a chat about this too - he wanted me to drop T3 from 20mcg to 10 but I have managed to stage him off. I am currently on T4 50mcg and T3 (cytomel) 25 mcg daily.
Amazing and damning Shaws! I will save this link to print off if necessary for my docs. They were already astounded when I said you could get a months supply of T3 from Greece for £1 and 10 months supply from mexico for £40!
You cannot find out about yellow-carded medicines from the MHRA in the way you suggest.
I believe it is quite rational and sensible for the MHRA to read the yellow-card reports and do some investigation before doing anything like making them public, ordering a recall, or whatever else. Otherwise simply reading that someone has said batch 12345 is bad could cause a stampede of people refusing it - quite possibly on no valid grounds.
How high is your T3?
Is that a realistic value? Or did you take T3 shortly before the blood was drawn (thus potentially giving a misleadingly high level)?
Yes, I understand this though believe there were a serious amount of complaints about that particular batch - there are lots of posts about it on here when I have researched too. I do not want to be unwell again and am just not willing to take the chance that I try T3 that doesn't work for a few weeks/months. Yes, Rod - I think I did have the blood test not long after taking T3. I will ask for another test just after xmas and not take my T3 first. Thank you!
billie_di, all I can say about the high FT3 result (I presume it is the FT3), is how do you feel? Where is your FT4 in the range? It's ok to be a little high, but there is a danger of pooling T3. Do you cut the Cynomel as I have heard that it is stronger than others.
If you were pooling then you will have high FT3 result and still have symptoms, it is when the T3 isn't getting into the cells and instead just hanging around in your blood. It's commonly caused by low Iron or low cortisol and results in hyper like feelings. Once you work out what it is and correct it, then the T3 will start to get back into the cells again.
It sounds to me like you're doing well on your current dose, but if you do start to feel hyper like feelings then you can always drop a 1/4 of the Cynomel until you feel better. (That's all I was meaning about cutting it into halves/quarters)
Hi Billie di just to say you're getting great advice here from Jane, helvella, and shaws. I am no tolerating current batches so am on cynomel and feeling much better. I have sent all my batch related blood test results to MHRA but the results do not reflect my perception of well-being. For me the solution is the same as for Jane b's daughter. Stick with cynomel and adjust by symptoms. I support with adrenal supplements as I have one adrenal gland. It could be the 81377 is ok for you. It's a case of trying it out or sticking with what you know works for you.
Hi Sarah. It would seem that is what I have to do, trial and error is the way forward. As I don't feel any particularly bad symptoms, not sure I should change the regime at all despite the docs assertion that my T3 is too high and TSH suppressed and I must!
Many people do feel the Mexican Cynomel is more potent so that may account for the difference, plus the extra 5mcg can make a big difference in some people. The t3 test isn't very helpful if you are taking t3 because of the short half life. The levels of t3 in your blood vary a lot depending on how soon after your last dose the blood was taken.
In afraid I can't comment on the batches of NHS t3 as I don't know enough about the batches you Menton or the yellow card system. Hopefully someone will be adjoining shortly who can answer that part of your question
Thanks Carolyn. I think this is the case too, going to drop the cynomel just a little and not have blood tests straight after am T3 and see how that goes.
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