I am so thankful I have found this board. I've been reading the posts and the generosity of the replies. What an extraordinary group of people. Do thyroid issues make us kinder and braver?!
I am in the US (but am British) - very brief history: I'm 43, female, a nutritionist and trainer (so I eat well and exercise)... diagnosed hypo about 3 years ago. I was suddenly exhausted and gaining weight, and eyebrows fell out. It was very sudden, following silicone breast implants, which I had removed two months ago (yay!) - mentioning because I'm wondering if there is a connection between this and becoming hypo. I also have two small pituitary adenomas - unchecked in 5 years.
When initially diagnosed was put on NDT (up to 6 grains a day - started one one -increased
to 6 over time -gave me hives). Got a second opinion. Saw a horrible doctor who told me I didn't need anything and cut all the meds- and told me to eat 800 calories a day and drink coffee 'like a woman' which apparently means 'black'. (I use almond milk and apparently the 20 extra calories was the reason I was getting so fat). I put on a stone, saw a third doctor who put me on 125 levo (t4), and gained another half stone.
I felt like I was dying on t4. No energy.
Was so hard to work.
Finally found my current doctor. Harvard guy, a little off the beaten path, a gynecologist and endo, somereviews claim he thinks everyone has a thyroid issue (maybe he is right) who put me on pure t3 (50) and has since increased me to 100mg t3 a day (taken in 3 separate doses).
So here's my question: it has been 10 months.
During this time I have NEVER FELT BETTER!! I have lost 1.5 stone, my hair is thick, my energy is back, I'm happy !!!! (T3 is prescribed off label for depression so I'm very happy ha ha)... I feel GREAT! But I'm scared because my original doctor told me this dose will kill me, and although I trust my doctor and love him, I cannot find anyone in the US online who takes this amount. Everyone says I'm going to die. Imminently. Or break all my bones. Meanwhile my doctor tells me 'you need what you need, stop reading idiotic things on the internet' (which I appreciate). He would prescribe me 125 a day if I asked.
He believes in checking symptoms ONLY (he doesn't check my blood says it's a waste of time).
So I want to ask you, community: does anyone have experience taking 100mg+ t3 ONLY a day for YEARS. And have you broken all your bones or died as a result?!!! Seriously, can anyone reassure me that my dose is ok if I feel ok?
Thank you 🌷
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Nutripea1220
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I don't take T3 only, I take a combination of Levo and T3, but 300mcg T3 daily is a high dose. What are your test results like, I presume you get them checked. The most important one, of course, being FT3.
Thank you so much for your reply. Just a quick note: it's 100 not 300. My doctor thinks bloodwork is ineffective and that on optimal t3 -t3 WILL BE HIGHER THAN RANGE -and t4 will be lower and TSH will be repressed and he's fine with that ... so I'm just wondering if anyone else has this protocol? Thank you soooo much for taking the time to reply!!🍀
Sorry Sophie, my mistake, I read "100mg t3 a day (taken in 3 separate doses)." and my brain said that was 300mcg - time forms coffee I think
So, 100mcg is possibly more than some people take, but not massively high.
Everything I have read agrees that when taking T3 then TSH will be suppressed and FT4 will be low (and I frequently quote it in replies) and I would expect to see FT3 high in range, maybe a bit over. But I don't agree with your doctor that bloodwork is ineffective, not completely. I think when taking T3 then it's worth keeping an eye on the FT3 level and seeing just how high it is. My reading/research tells me that *long term over range FT3* can be a factor in atrial fibrillation and osteoporosis.
On the other hand, I have seen it said that when taking T3 only, blood tests aren't any use and a urine thyroid test is a better indicator.
It isn't because people are not taking large doses, but that you are not finding them!
In cases of reduced sensitivity to thyroid hormone (thyroid hormone resistance), we see things like this:
Of great importance are observations on the catabolic effect of exogenous TH. In some subjects with RTHß, L-T4 given in doses of up to 1000 µg/day, and L-T3 up to 400 µg/day, failed to produce weight loss without a change in calorie intake, nor did they induce a negative nitrogen balance (2,101,104).
I agree with your doctor - you need what you need! There was a period when I needed a lot. I took over 100 mcg for a few years (sorry, can't remember how many years, because I lost part of my memory in 2013). I got up to 225 at one point - but didn't stay on that for very long.
Then, for reasons I won't go into, in 2013, I stopped everything for six months - supplements, T3, the lot. Then started again. And found I needed less. I was on 75 mcg for a couple of years. Now I'm taking 62.5 mcg.
My needs have changed. I have no idea why. Perhaps something to do with rT3 - because before the T3 only, I was on 6 grains of NDT and thought I was going to die! Perhaps some other form of hormone resistance, which is resolving itself. I don't know - and no point in asking any sort of doctor! lol We just have to accept that things are as they are. But, I would love to meet your doctor. He sounds great!
There was a man called Dr Lowe (now deceased) who published books and articles on the web about fibromyalgia and T3. He himself took 150mcg T3 every day for 25 years without ill effects. (He died as a result of a head injury from an accident - nothing to do with T3.) Sadly, a lot of his stuff has disappeared from the internet since his death, I don't know why.
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