I realize this is a UK forum, but I thought my sisters and brothers across the sea might be interested in what the Yanks are doing. This Guideline from the American Thyroid Association makes me grit my teeth:
"While short-term studies suggest that synthetic liothyronine may have beneficial effects on weight, lipid levels, and depression in hypothyroid patients, long-term controlled clinical trials using a longer acting form of triiodothyronine are needed before this treatment can be recommended for routine clinical use. "
Another way of saying this is: Patients who still feel like crap, despite us giving them our very best drug, should just keep on suffering for as long as it takes. Long-term clinical studies take years to complete, and then even more years for the committees of experts to incorporate the findings into their practice guidelines. If anyone ever does conduct such a trial, then--and only then--can the patients can be treated with a drug that works.
Thanks vocalEK, it seems we’re all in a similar position. At least the phrase ‘routine use’ may provide a glimmer of hope for some, an opportunity to challenge. This is all so wearing...
Hi , I beliieve T3 makes the difference for me . Without , I have serious issues with bowel and kidneys/ urinary system, heart palpatations , to name the most worrisome symptoms .
Ive never had depession to speak of and my weight has never exceeded 56kilos .
We all know how wrong 'they' are.
Keep strong
The focus on weight and depression gives them the reason to wrongly suggest its a womens problem and nothing serious.
Yes i agree, my body nor brain works properly without T3. I very much regret the days of my life spent refuting a diagnosis of depression, how much easier all round would it have been to have provided me with T3 earlier, it wasn’t even expensive back then.
Oh, yes, we are gritting our teeth. While trying to not “dis” the ATA, having been to numerous Thyca conferences, we the people suffering, hear them speak this right to our faces. Makes us furious and disheartened that all they care about is the big synthetic (T4) manufacturers (read between the lines).
Use of synthetic T3 aside, a number of us are trying to get the ATA to change their wording. Two years ago, I spoke in-person to the past-President of the ATA and was told that they do not support DTE (desiccated thyroid extract) use because they have not conducted their own studies on it. When I asked why not, he told me that the don’t want to spend the money.
The evidence is building that the T4/T3 conversion issue has a possibly genetic component to it. This will take money, backing, research, hypothesis, testing, studies, etc. it is very detailed, time-consuming, work.
So, we spread the word about DTE as much as we can... my question is why the DTE manufacturers do not spread the word? What/who is holding them back? Again, there is a big issue here with “monopoly” between the bigger companies and the smaller companies. Seems that they all have to get the raw materials from the same source (pig farm, etc).
What I find interesting is that there is research on T3, just not in the endocrinology field. In cardiology low T3 levels are known to be associated with heart failure and T3 is being researched as the next big anti-depressant drug. So it would make sense when a doc suggests an anti-depressant we request T3.
But I also think it’s important as patients that we try to present our symptoms objectively instead of in terms of how we “feel”. Things like “I can’t recall numbers in sets of three” and “it’s become difficult to focus on the steps in a task” instead of “brain fog”, or “I can no longer walk my usual distance” or “I can’t take care of my daily responsibilities” instead of “I’m tired”. The more o jectkve we are the less able the doc is to brush our symptoms off as just an emotional response.
I like your suggestion to express symptoms more to the effect...like I can't concentrate to pay my monthly bills. I will try this approach. Although there is a danger of being diagnosed with Alzheimer's...that is the popular current diagnosis for older people, I am 73, Graves, post thyroidectomy, taking 3/4 grain Naturethroid daily. I cry easily and diahrrea. On my own I am adding another half a pill twice a week. I am doing this because the medical profession in US does not care anything about T3 and doesn't even want to test it. Just TSH. I think I've learned enough on this website to make some changes on my own. My other choice is to just be sick all the time. Thank you all for your information
Leftbehind ~ do join us on the thyca.org/sg/inspire/ We talk about how to add T3/NDT quite a bit there. Plus you might find a local support group at thyca.org/sg/
3/4 grain NDT is a really low dose.
As much as many endos in the US won't support T3, it seems we have a lot more options that our friends here in the UK. I follow my thyroid cancer with a cancer center endocrinologist but my primary care orders my labs and writes for my meds.
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