Hello everyone. My mum has been on T3 (50 mcg) for a while (3 years). She wants to gradually stop it, as she was actually misdiagnosed it turns out, but she is afraid because she thinks her thyroid may stopped working due to thyroid hormone replacement. Can any of you suggest, please, how she can gradually reduce the dose and whether you have heard that thyroid started working after such a long time on replacement therapy? Thank you so much xxx
Stopping T3: Hello everyone. My mum has been on T... - Thyroid UK
Stopping T3
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yuliyam
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Please share some details about the misdiagnose issue, that is quite unusual.
Thank you so much for enquiring. I will copy the answer below:
It turns out her doctor was a charlatan (she lives in the third world country), he said she has a problem with T4 to T3 conversion but it turned out he did not even do the proper test to determine this. But she started taking T3, liked that she lost weight and continued with this without even trying to confirm the diagnosis 
What kind of test did the bogus Dr asked, anyway? Nothing relevant, a TSH and a FT4 at least?
What kind of pills she takes? Make and concentration
No signs of hyperthyroidism all this time?shaky, nervous, increse urine flow, etc?
She said he did Free T4 as far as she can remember. This was her friend's husband, so she did not even ask for the results properly. This is how much she trusted him. She said to him her main problem was weight gain. Thank you x
Well, given the context, i would recommend decreasing immediately the dose (not stopping but decreasing) under the supervision of a real endocrinologist.
Thank you. I think I will tell her to reduce by 12 mcg per week and have made an appointment for her with a reputable endo, but she can only see her in 6 weeks. Hence I am here asking to share your experience. Thank you for being so helpful, not judgemental and lovely.
Sounds like a plan. I would start like this:
0. Make appointment to endo service
1. A complete set of thyroid tests, including tsh ft3 FT4 and even TpoAb
2. Start decreasing with 12mg per at least THREE weeks, maybe even more.
She needs to give a chance to the thyroid to pick up. That surely slower than a t3 pill
Thank you so, so much
Also, pleas consider testing levels after each decreasing step. That's why even 3 weeks seems insufficient timeframe, considering she's coming from a supraphysiological dose of purely active T3, administered for a long time.
yuliyam
T3 does lower secretion of TSH but it would be unlikely your Mum could medicate T3 without a clinical need of it.
Why does she now think she was misdiagnosed?
What are her free thyroid hormone levels?
Thank you for the reply. It turns out her doctor was a charlatan (she lives in the third world country), he said she has a problem with T4 to T3 conversion but it turned out he did not even do the proper test to determine this. But she started taking T3, liked that she lost weight and continued with this without even trying to confirm the diagnosis
Has she had blood tests by a proper Dr now to see how much thyroid hormones are in her blood while she is on T3?
Yes, I asked her to do this. Thank you for asking. She has low T4, normal T3 and low TSH. But obviously it is now due to hormone replacement. She worried that now she will come off T3 her thyroid would not work properly.
You say she was given t3 for weight loss. Were her thyroid hormones tested at all before she was given t3?
Unfortunately, I have no idea. I asked her, she said "I think it was T4", I asked him (the so-called doctor), he does not want to talk about it. His licence was revoked (another issue, not related to mum). This doctor is my mum's friend husband, she trusted him completely. She gained a lot of weight, asked him for help, he said he was sure it is thyroid and told her to take T3. Thank you for asking x
The effect of T3 clears in about 3 days but takes about 10 days to clear your system. I have come off T3 twice and would never go back on it again. I've tried T3 and NDT. It's a bumpy ride coming off it. My heart objected and I had some palpitation issues. I'm off thyroid medication completely now. My thyroid problem is caused by nutritional issues I don't have hashimotos. I had to go back to basics as there are so many nutrients required to make thyroid work properly I'm not surprised so many are not diagnosed properly. Unfortunately the medical profession know nothing about nutrition and even less about what makes an individual's thyroid tick. If your mum's thyroid problems are ntritional there are videos by Dr Peter Osborne on YouTube. He goes through every stage of thyroid function and T4 and T3 production to getting it into the cell and lists every nutrient required. The biggest challenge I found is the rollercoaster ride until your thyroid starts working on its own again.Body builders do this all the time they abuse T3 for weight loss before competition and then they wean themselves back off. I've never been on a lot of T3 so coming off was relatively easy for me but 50mcg T3 is more difficult to stop I would assume. I think the difficulty is your mum's T4 would be very low. Mine was when I stopped NDT so I added back in T4 only to help my body adjust then I reduced the T4 in steps until I was on none at all. The biggest thing that needs answers is why is her thyroid faulty?
Do you mind if I ask you how long ago you came off thyroid hormones completely?Because to me it sounds as if you are doing a very dangerous thing to yourself.
I don't consider it dangerous because I don't have auto immune problems. Different doctors have had me on and off of thyroid medication 3 or four times because I have a major problem with the petrochemicals in medication. I decided to listen to my body because I have no conversion problems only low T4 problem. I was off for 9 months last year and now 2 months this year and have no intention of going back on it again. There are many people out there in my position. I wouldn't have done it if I had hashimotos but I'd rather fix my nutritional deficiencies than battle with my body objecting to thyroid medication I don't need. I have seen a few private docs that were happy to put me on T3 that I didn't need in the first place.
Body builders do this all the time
Bodybuilders are a very, very different case for many reasons. Not least, they often start out healthy, frequently "stack" several pharmaceuticals together in combinations which limit the use of their experiences to others. And they don't take a large dose of T3 for three years before deciding to stop - every case I have read it is short term, like weeks - or even days.
Thank you so much. It was not faulty, I now realise. She wanted to lose weight, asked her friend's husband, who now we know is a charlatan doctor, trusted him completely and is now in this bind. If not too much trouble, could you please let me know how long it took for your thyroid to work as before and by how much you reduced you dose every week? Thank you so much x (together with T4)
This is the sort of situation which is unusual and every person will respond differently.
You can't take the experience of someone else and use it to make a plan, Even when we see thousands, even millions, of experiences, they still vary considerably.
What if she did actually need some thyroid hormone and you set about trying to drop her dose to zero?
Were there no tests at all?
Thank you so much for your answer. She said she did T4. It is a 2nd world country, all medical records are on paper, they just now started using electronic systems for recording patients' medical history. At the moment there is war going on, so it makes it even more difficult to access records (she is in Ukraine)
From what I have read, in many places, Ukraine doctors are particularly aware of thyroid issues - largely because of Chornobyl and its consequences. (Not just the effects of radiation. But also the generation born to those who had thyroid issues due to the event, and so on.)
Mind, I also have not found a T3 product available in Ukraine (under normal circumstances - not expecting anything to be working and supplying normally now).
Haven't read every word of this thread, but seems to me no-one has asked the essential question: is your mum actually hypo or not?
You say the false diagnosis was that she was a poor converter, but the right tests weren't done. OK. Happens. But, was she hypo before she was told this?
She's perfectly correct in that taking thyroid hormone replacement - levo, T3, whatever - will stop her thyroid working and producing its own hormone. That's a given. BUT if you stop taking the thyroid hormone replacement, after a while the thyroid will just pick up where it left off. I can say this in all certanty because i have done it. I was taking 225 mcg T3 only, stopped cold turkey (for reasons I won't go into here, but I wouldn't recommend anyone else try it!) and six months later, my supposedly dead thyroid was produing enough hormone to keep me alive - I obviously went straight back on T3, because I was very hypo! But, I was still alive because my thyroid picked up where it left off.
Next question: is she also taking T4 (levo)?
Question: how did she feel while taking T3, and how did she feel before she started it?
If she has no idea if she's hypo or not, the best thing to do would be to reduce her T3 by 5 mcg every two weeks. Then wait for six weeks and get full thyroid testing, and see how she feels.
And, by the way, I feel I ought to add a warning, here: you talk about 'charlatans' and 'proper doctors', but the truth is that where thyroid is concerned, most doctors are 'charlatans'. They just don't know anything about it, and very often misdiagnose in the opposite way: they tell hypo people that there's nothing wrong with them! So, be very wary.
Let us know how she gets on. This is a very interesting case. 
Thank you so much for your reply. She did not take T4, she feels fine, just like before fine only is not putting on weight so easily as before. This was the reason she went to the friend's husband, who claimed to be a doctor (his licence is revoked). He said it was T4 to T3 conversion since she does not have insulin sensitivity, and she started taking it.
OK, so she doesn't have a prior diagnosis of hypo, right?
Does she have any idea what tests he did? You may think he is a charlatan because his licence has been revoked, but that means he did have a licence to beging with. And, having it revoked probably had nothing to do with his knowledge of thyroid. He could still be quite knowledgeable in that area. So, frankly, he could be wrong. But, on the other hand, he could have been right.
You say she's seen a 'proper' doctor now. What tests did he do? And what were the results?
You are absolutely right. I had considered this. His licence was revoked because it turned out he faked his degree. She did T4 as far as I know (and she as well). In Ukraine, where she is at the moment, only now electronic system of medical records is being introduced. 3 years ago it was all done on paper. He destroyed all his patients history because he did not want authorities to see them
New doctor did TSH, T4 and T3.
Thank you again for investing your time in this. I appreciate it so much x
OK, presumably they were FT4 and FT3? Does she have the results and the ranges? Difficult to say anything without knowing them.
And, how much T3 has she been taking?
Hi yuliyam, I'm so sorry about what is happening in Ukraine. Terribly stressful and not healthy, of course. I just want to point out that a hundred years ago before blood testing there were other ways of determining thyroid conditions which the doctor may have used to come to the conclusion as they did back then. I would not assume he was a charlatan if she showed other signs and then using a T4 test to come to a determination. Be careful with this reduction of T3. There may be no reason for it.
Thank you so much. Our house was destroyed, but my mum is alive and that's the main and the most important thing. We are appreciate support of our friends and allies around the world so, so much. When victory will come, it will be rightly shared with everyone. Thank you again.
As for the doctor. He faked his degree. When he was called for army duty, it all came up and he himself said that he read that bodybuilders use T3 to lose weight, so he tried it himself and would give the same advice to friends and patients.
x
Despotic leaders are bringing misery to so many innocent victims. The courage of the Ukrainians has been nothing short of amazing.We know for a certainty that T3 is the active component of thyroid hormone and while it is not the only reason for maintaining optimal weight it certainly is helpful to have a metabolism that will burn calories. So there was probably some connection if she gained more than ten pounds. She may have been able to support the gland with other methods prior to going straight to T3 but after 20 years the endo I went to said that my TSH was NOT suppressed. I'm not so sure about that.
Since the pituitary gland determines the need from the thyroid gland it should have the ability to restore output IF the thyroid gland is healthy enough to produce hormone. That's why it would be good to test often if possible although I believe she will have signs of low thyroid. Gaining weight, for one; constipation is also an early sign and watch for hair and nail slow growth. Slow digestion may also affect nutritional needs.
Sometimes the patient can diagnose even better than a quack doctor which many of us have found by educating ourselves.
Absolutely!
Hi Yuliyam, I would like to hear what happens to your mum as she comes off 50mcgT3. In my case, even when I tried to slowly wean off my 50mcg t3 to 37.5mcg t3, all my aches and pains returned and water retention returned. I have been on 50mcg t3 since 2017. I tried to wean off t3 a few times but was never resolute enough because the aches and pains n water retention n weight gain made it very hard for me.
Of course, I can update you in DM x
If you do not mind me asking, did you take it for an underlying condition or it is similar to my mum's case?
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