re discussion about safety of thyroid hormones... - Thyroid UK

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re discussion about safety of thyroid hormones on B12 forum.

12 Replies

There seems to be a perception that taking thyroid hormones can damage your thyroid long term especailly if too much is taken and I wondered if there are any studies or evedence to support this. There is also concern that it is dangerous. Having looked up the records in the yelllow card scheme it appears that there have been a few deaths associated with levo and some serious incidents side effect but nothing but minor sides effect recorded for T3 and NDT. Iwould imagine the deaths which were about 12 for levo if I remmber rightly are incredibly rare considering the extent to which it is prescribed. Any thoughts.I think the idea is that taking hormones means that your thyroid stops being needed and so ceases to function.

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greygoose profile image
greygoose

Your thyroid does often cease to function. But, so what? That won't kill you. You are taking thyroid hormone replacement. And, if, for any reason, you are unable to take the levo at any point, the thyroid will just start working again, and produce as much hormone as it can.

And what about people who have lost their thyroids? They have no choice but to take some form of thyroid hormone replacement, and usually, it's levo. And very often, they do very well on it.

The problem is usually the competence of the doctors doing the treating, rather than the treatment itself. Why are they discussing this on a B12 forum, anyway?

greygoose profile image
greygoose in reply togreygoose

Just read the thread in question, and the negative comments are from people who know nothing about thyroid. Just ignore them.

in reply togreygoose

Yes I am not worried any more at all about safety and am convinced thatI would die before very long with out.. Iam convinced thatall the fear about heart issues due to T3 or taking a bit too much being dangerous is rubbish too having read all the yellow card reports. I imagine any sudden deaths or seriosu heart conditions causing problems would have a number of endos rubbing hands with glee at the oppertunity to report it.

I just thought it would be good to try to get facts straight to help bring some clarity and sense to the rumours.

greygoose profile image
greygoose in reply to

Well, I would say the fact that so many people live well for many years on levo speaks for itself. And, although I don't have a link, or anything (read through diogenes'/helvella's posts to find the paper) it has been proved that over-dosing on exogenous thyroid hormone, does not have the same consequences as high levels of thyroid hormone caused by an over-active thyroid. :)

shaws profile image
shawsAdministrator

Deaths could be due to being on too low a dose of thyroid hormones. T3 is essential for the millions of T3 receptor cells in our body and the heart and brain need the most.

FT4 and FT3 are never checked and heart defects could occur as many doctors do not increase the patients' doses as they seem to believe that if it is somewhere in the range, that patient is on sufficient, even top of the range which is around 5 when we need it at 1 or lower with FT4 and FT3 near the top of the range.

The following doctor - a scientist and researcher - only prescribed NDT or T3 and this is an excerpt from one of his links:-

"We ran so many in years past that the results forced us to a conclusion: it's the rarest exception when the ECG rhythm of a patient is of concern. We've referred for cardiac consults the few patients who had rhythms we were concerned about. Only once did a cardiologist advise that the patient undergo cardiac rehab before beginning the use of thyroid hormone. In every other case, the cardiologist said that thyroid hormone therapy was safe for the patient. Some cardiologists said that the therapy would most likely improve the patient's cardiac health.

My years of focus on this issue boil down to a few evidence-based beliefs. Arrhythmias occur in some patients with hypothyroidism and thyroid hormone resistance. They occur when the patients’ doctors deny them thyroid hormone therapy, or when their doctors under-treat them with thyroid hormone. We usually say these patients' arrhythmias result from "hypothyroid heart." "

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

Junep profile image
Junep in reply toshaws

Well I for one experienced some horrific episodes of arrhythmia , with a couple of frightening times when I woke with a jolt feeling that my heart would stop altogether . However since being on a combination of NDT and T3 that no longer happens .

I self treat , so GP has virtually left me to it , which on the whole I'm happy to do , though it would be nice to be monitored occasionally , sadly I'm going to have to do that privately I suppose , i just can't stand the thought of the likely lecture on the " dangers " of self medicating .

shaws profile image
shawsAdministrator in reply toJunep

I remained undiagnosed despite lots of clinical symptoms.

None of the doctors or Specialists I consulted tested my thyroid gland but I had other diagnoses and treatment for things I didn't have.

Even the A&E discharged me after an overnight stay with 'Probably Viral with high cholesterol' (after running on treadmill etc). The fact is that my TSH was 100 after a self-requested test taken three days later. My heart had also been playing up as I was so short of thyroid hormones. After my blood test result my GP phoned two hours after test to ask who requested the test and I said 'I did myself'. Obviously the lab contacted the surgery due to my result.

On levothyroxine I had even worse palpitations and husband had to call an ambulance several times as did my workplace but these improved after adding T3 to T4. As soon as I switched to T3 only I have had no palps since. I also source my own T3 which I prefer as doctors try to fix your dose due to the TSH.

in reply toshaws

Itis so crud isnt it. What applauling treatment at A and E.

shaws profile image
shawsAdministrator

I should have said that Researchers/Scientists have proven that most feel much better with a combination T3/T4.

Gcart profile image
Gcart

I was in hospital on at least 4 occasions with chest pain and erratic heart rhythms before TT. No idea what thyroid was doing as never tested!!

However I have had no episodes since. Tells me it was caused by thyroid problem undiagnosed .

On T4/3 now No chest pain episodes . Had cancer , its said that it causes no symptoms but I strongly disagree. I had many more which was s big problem to me .

I don't believe there is any evidence for that whatsoever. The reason we take thyroid hormones is a) because the thyroid is damaged and can't produce enough on its own or b) the pituitary or hypothalamus is damaged and can't signal the thyroid to produce enough hormones. If the thyroid was able to work correctly, we wouldn't be taking hormones. PLUS as 90% of hypo in this country is apparently caused by autoimmune thyroiditis, the thyroid will be destroyed further over time, so that's why people often need an increase in dose, not because the levo has somehow made the natural thyroid function worse. What's the point of flogging a dying organ and causing more stress to the system? Stress is a killer.

SilverAvocado profile image
SilverAvocado

I immediately recognised this story as one of those Doctor Myths that goes around - "Oh, I don't want to put that young person on thyroxine until their TSH is sky high. Because putting them on tablets will condemn them to a life on medication!"

It's the idea that taking thyroxine pushes down your own thyroid, possibly causes addiction. Just another excuse to keep people undermedicated or unwell.

Given that this is people who know nothing about thyroid hormone, I also wonder if these rumours might be related to T3 taken by weight lifters as a performance enhancing drug? That obviously does have its dangers! T3 can also be abused as a weight loss drug, so there may just be the idea buzzing around that these are drugs that can be abused. And no doubt do lead to injury and goodness knows what!

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