Iv tried so hard to obtain t3 i can tolerate iv been persevering since February increasing slowly up to 87mg after changing to mexican brand from greese i have had yet another reaction to fillers i was doing fine on 1 particular batch from greese that was sent to me i was getting better but went down hill on a different batch, theres was significant differences in use by dates so im guessing this has something to do with the difference in how i was feeling. Anyway as i cant get that brand any longer i tried the mexican and that is not suiting me iv had the worse reaction to the fillers. I am due to have my thyroid removed as its cancerous but i can see no hope in medication 🙈i have tried t4 and ndt. i feel i have no choice but to come of the t3 also (Have not tried turkey or cyprus t3)
My question is will my thyroid come back to life after medicating for so long and what is the best way to tapper down i already have blured vistion and aching legs from dropping 6mg, i only have 20 days left of medication i can bearly tolerate is this enough to tapper down in time for my own thyriod to kick back in? im currantly taking 31mg at 7am 31pm at 1pm and 25mg at 6
I know i will be without a thyroid soon so will have no choice but to take medication but i honesty just dont know what to do now.
I feel like im waiting to die now as i cant tolerate the two t3 medications iv tried im losing the will to try i know by quiting there will be no other options, at 38 im now trying to convince myself i have had a life and lived enough and this is my end and its is ok :,(
Sorry to go on any advice greatly appreciated
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Tbob
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Hi tbob, I don't think it's ok to give up. You are in a tough spot but this is no time to quit. May I ask why you feel it's the fillers that are affecting you and not your cortisol levels or iron deficiency? Have you looked at the various NDT with their ingredients. Also if you have a compounded NDT I think you avoid any fillers but I'm not certain and have never done it. This article asks the same questions on why you have problems, perhaps the information will give you some ideas. stopthethyroidmadness.com/n...
Hi heloise thank u for ur reply i have corrected ferrtin b12 and vitamin D and all are quite high in range now, i do believe my adrenals need some help and have been doing the paul Robinsons dosing which was working on 1 particular batch of t3 i was gifted, i cant take any glandular to help adrenals as iv had bad side effects from these also. I dont know how to dose NDT but the little i took didnt agree with me either i was guessing its because its made from a thyroid gland it natural has iodine in it (please correct me if im wrong) and anything with iodine in i cant tolerate, it makes my neck hurt more and i feel really unwell. i can not stimulate my thyroid at all.
I really do feel lost to this im scared of what is going to happen after iv ran out in 20 days 🙈 my neck is so painful going back to it trying to work is filling me with dread along with the imminent fatgue that will follow i can barely do anything as it is.
I wouldnt know how to swoop from t3 to NDT or the difference in brands ect would appreciate and help with that 1 if it does become a option
Bob, I went to your other posts hoping to find out more of your history. Do you have hashimoto's? What was your TSH when first diagnosed? You are on a very high dose of T3, are you on Triyotex. It's very weak and I really doubt the actual contents being 75 mcgs. Cynomel is very good and I guess you are cutting one tablet into quarters adding one segment to two of the whole tablets during the day. Thyroid hormone should be very compatible to your body. It is not a medication or foreign and porcine is also very compatible. Could you look at these and think you have tried all of them? stopthethyroidmadness.com/o...
Since you are running out of T3 (so am I) you should find an NDT and reduce some of your T3 as you add NDT allowing your body to adjust to the change.
Often people who feel they are allergic to the fillers will take benedryl. There must be ways of dealing with this.
It is an opinion which some people have about Triyotex. Triyotex is 75mcg T3 and you should not assume it is weak unless you personally try it and find it to be weaker than other makes.
Thanks Clutter! I hope I will one day be in the position to try other makes lol! At the moment I am just so grateful to get anything! I have found the triyotex to work well for me 😄
I'm trying to recall how much I had to increase but being a capsule I was having to open it but I think I was doubling my dose. Others also made similar remarks so I assumed it wasn't me but the product.
Also, after opening the capsule and saw the little beads had a hard shell coating, I felt it was a timed release T3 but the pharmacy denied that. I still question that.
But as Clutter mentioned, you should see for yourself and if it's the only T3 you can get just be prepared for anything.
Hi Heloise, it is the only one I've tried, they are still little beads and it's not precise if you have to split them lol ! I am taking one large dose at 6am ish as I found split doses not ideal,so if they are timed it has worked to my advantage, it has worked really well for me but I will certainly try other makes if I can!
Oh, no, if this works for you, stay with it maybe it was just my chemistry. Especially now when people are having trouble accessing T3 at all. And if you switch you may find you need less and that might be a problem.
I know about splitting. The suggestion was to fold a sheet of paper and then pour the beads along the crease in single file and measure out halves or thirds. LOL, that got old rather quickly.
Ask people to private message where they get their supply after you select which you want to try. Tell them where you are located. Then we'll try to calculate roughly how to add and subtract both although I went almost directly from NDT to T3 but started with 5 mcgs and increasing every four days. You are on such a high dose of T3 it seems to me anyway. I was on 50 mcgs. and when I had to go back to NDT I am now on one and a half grain. You may need over two grains but it depends on how well you convert.
Thank u heloise i have just put a post out asking where i can get some turkish t3 to try and also where i can get NDT, i have come across metavive l it is 15mg a tablet have you heard of it? i dont understand the dosing with NDT at all to work out how much it is i should take while reducing the t3
I can't remember what metavive is although I've seen it mentioned. OK, I just looked up metatavive II and it seems to be an NDT using rice and gelatin so it appears to be like other NDTs. Are you getting prescriptions or trying to find without prescription?
I don't know much about cancer, but are you sure you need to remove the entire gland. Some just have part removed. Clutter knows more about that.
So if you get a supply of T3 are you still going to take NDT? (I am using both and happy)
one grain is equal to about 25 mcgs T3 so if you began taking 1/2 grain of NDT and reduced half of your T3 tablet to start and see how you feel. You could probably stay there for a while if you wished because you aren't really adding or subtracting just changing. Do that again now it would be one grain and no tablet of T3 in the morning. The next time you will go to 1 1/2 grain of NDT and reduce another half of T3 and then when you get to two grains you just take your last dose of T3. It really depends on how you feel during all this and very subject to change.
That sounds like a good plan i just hope i dont react badly to NDT again it is metavive i tried but couldnt tolerate it so stopped i wonder if i should try another brand? Or are they all the same?
If you could ascertain which ingredient is bothering you as it is almost impossible for the thyroid part to cause a problem for you. Do you eat pork? Than it is not the thyroid hormone.
Well, porcine is pork and if you have eaten it without a reaction then you are ok. In that list of different NDT from the link I gave you. Why don't you collect the different ingredients used and google each to see if others have reactions. Pick the one with the least additives.
Iv done quite a bit of reading today i still dont understand a lot of the ingredients but i think iv narrowed it down between the np thyroid as it can be taken sublingaly or nature thyroid this has been recommended to me a few times, can i ask what u take?
That's what I take now, Tbob, along with Uni-Pharma T3 but I'm running out so I'll raise the Naturethroid by half a grain. I've done it before and it worked out fine. You'll still be getting some T3 in your Naturethroid but if you can keep finding supplies of T3 it may be good to keep them both. I swallow mine and I don't think it will melt. You will have to chew it.
I have stomach issues so would prefer to take it sublingaly i have been taking the t3 this way, i am also looking into thiroyd. Im also still trying to source t3 also as i dont know how im going to react to any of this 🙈 i desperatly want to make my wedding date and be well 😓 i would of like to try naturethroid as so many have had positives experiences with it
It is in 10 weeks i feel so unlucky at the moment 🙈 iv lost more than half my hair and eyebrows, it had stopped after i got to 87mcg on 1 particular batch of t3 but now iv dropped the dose and back on bad batch i dread to think whats going to happen to the rest, my energy is rock bottom too dizzy ect im really worried about getting to the day and also coping on the day 😢 i feel like death at the moment
Some people have said their hair has grown back. I was researching and often hair loss was blamed on low iron. One friend raised her T4 dose and started losing hair so she backed down. It's kind of an unanswered dilemma.
And another is what you are saying about the batches. Reputable companies should have good quality control. I've used some for years and years and not had a bad batch so I"m a little suspicious about that. But, who knows? It is quite discouraging. But dive in so you can start finding out what may help you.
Thyroid hormones cannot be taken sublingually as the molecules are too large to be absorbed by tongue and you may not be taking the dose you think you are.
I take metavive II which us a bit stronger than the metavive I. I used to take nutrithyroid bur it became unobtainable in UK. I dropped from 3 tabs to 1. Medicheck test showed my t3 was ok but was overreacting. Still take levothyroxine 100mcg
I am sorry you aren't feeling so good and many of us have to trial different forms to try to find one that suits us. It is trial and error but we get tired and frustrated too especially if it doesn't work as we hoped.
There are also the original thyroid hormone replacements but they, too, would have to be sourced by you as they stopped prescribing NDT a while back but many patients like it and it also contains all of the hormones a healthy gland would produce, i.e. T4, T3, T2, T1 and calcitonin (in small amounts).
Lorraine Cleaver has a Facebook page and she was on the point of suicide before she tried NDT and is now strong enough to take her case to the Scottish Parliament stating she was told that levothyroxine alone would be prescribed and there was nothing else. NDT has given her back her life and anger I think is the driving force that people could become so unwell on levothyroxine. To be told there is only levothyroxine and nothing else is very hard.
I know of only one non-prescriptive NDT and it was through one of our Advisers that developed it before his death and his widow now runs this part. Other NDTs need prescriptons and there is a variety but you'd have to put up a fresh post asking for information to be sent by Private Message.
Thank you for ur reply Shaws i really think i should look in NDT i was planning on starting it after my opp because for some reason it makes my neck flare but i need to try a different brand i think
Paul Robinson's method doesn't suit everyone. I follow Dr Lowe's advice and he took T3 himself - 150mcg daily as he was thyroid hormone resistant and needed a larger does.
It was 150mcg and yes - all in one go and in middle of night. He was resistant to thyroid hormones himself.
He is missed a lot and all the sensible voices about how to treat/how to get better have gradually faded and all we get now is dogmatic treatment which doesn't suit all of us. I think they forget our bodies all have different needs and doses. It cannot be one size fits all and I doubt the BTA recognise such a thing as 'resistant to thryoid hormones'.
I didn't know you could become thyroid resistant. I used to take 300mcg T3 but had to stop it all together about 4 months ago as it gave me very bad diaorrhea even at 25mcg. I am working on improving my gut health for now. My main symptom is myxodema.
Hii @karispitit Wow 300mcg is a large amount i also think i have some thyroid resistance, could you tell me how u came off such a high dose i have cut down just 9mcg in the last 48 hours, i can feel the difference already more tired dizzyness ect
Im only cutting down as i cant get a hold of anymore i can tolerate and need to make them last longer 😓
I didn't plan on coming off T3 but I started getting explosive diaorrhea and it was like acid so some days I was in a lot of agony. My stomach just refused to tolerate even small doses. I had also by then developed IBS symptoms as well. I tried taking 25mcg last week and I started getting stomach ache and my stomach started rumbling and making funny noises. Then I had to dash to the toilet again. Even 12.5mcg had the same effect.
I also suffer with my stomach and when i first started taking it i was having violent golstones attacks i started taking it sublingaly and worked really well u could try giving that a go
Thyroid hormones are not made to be sublingual because the molecules are too large to be absorbed through the tongue so you may not be taking the dose you think you are.
Diarrhea and constipation are typically never caused by one singular problem, so I’m not totally blaming the thyroid. What I am saying is if you’re someone who’s been eating SCD or Paleo, using lots of supplements and still seem to have motility issues then it could be because of your thyroid.
The research suggests that too much thyroid hormone (hyperthyroidism) in the body is linked more heavily to causing diarrhea. There could be several reasons for this diarrhea including:
Do t know whether you have tried taking an antihistamine and hour before your medication to see if it makes a difference? If it doesn't stop the problem then it may not be the fillers and be something else. I realise you may well have done this but if he haven't it's worth a shot to cut down on the problems it could be. It's not easy trying a new approach as it takes a while to get going on a new medication and finding a dose that is right for you so I hope things go well for you soon.
Just had a look back on your previous posts and found some results and I think you were better medicated on your previous results of 65mcg. Going up to 75 seems a huge leap so I'm wondering if you are over medicated. Being over I've found can feel worse than being under and that was taking NDT which I am sure would have a lesser impact than T3. I should drop back to what you were on before though it will take a few days to see how you are feeling. If you feel no better on that you could still be taking too much but give it time and let us know how it's going.
Do you have an endocrinologist or a good doctor helping you?
Thank u @silverfox7 i cant take antihistamines unfortunately, i am currantly trying to tapper down iv dropped 9mcg in 2 days so seeing how that goes, i am self medicating as i was never listened to about my thyriod now the nodules have turned cancerous and need my thyriod removed
No, in short you cannot stop taking t3. The thyroid is the pulse of your whole body! Without it functioning you will be very ill indeed.
I don't understandvwhy you get t3 from different countries. Do you get a prescription from a Doctor or are you self medicating - very dangerous!
I suggest you see a doctor as soon as possible.
Also if you are taking 87 mg you are taking far too much! Thyroxine is gauged in micrograms, mcg, not grams. There is plenty of information about it on Google.
Which country do you live in? Surely there is help for people who cannot afford to pay for medication?
In the UK there are very few doctors who can, or will, prescribe T3, this is why we have to self medicate and buy from other countries! And no - there is no help for people who cannot afford to pay! We have also found that by helping each other we have greater knowledge of our condition than most doctors.
Mexican T3 doesn't come from Greece, it come from Mexico. The Mexican T3 is called Cynomel, and the Greek T3 is just called T3, and they are made by different companies.
The Triyotex, you get from Mexico isn't very good. I've never heard of anyone doing well on that. I tried it myself, and didn't like it at all. But, Tiromel from Turkey is very good. Why not try that? If you lose your thyroid, you've got to take something.
Hi greygoose iv read somewhere that you yourself was taking t3 at a high dose then came off can you advice me on how to tapper down successfull i really scared of this situation i have gotten myself into i have dropped 9mg so far and can feel the pain in my neck increassing 🙈 but im running out of t3 and havnt been able to source any other apart from tje mexican brand that iv had a reation to, can you dm me the turkey supplier if u can? Like i said i was finally doing well at that dose (hair stopped falling nails growing pain decreased pain in my neck had decreased and felt stronger felt stronge enough to have my opp) now im ill again unable to do much and as im running out feel i have no choice but to use it to tapper down with or i would just have to stop it dead at a high dose when the time comes.
Yes, I was once on a very high dose - 225 mcg - but circumstances meant that I just stopped dead. I didn't taper off at all.
Tapering off isn't going to make stopping any easier. You are still going to be hypo, and still have hypo symptoms. Why don't you just post a new question, asking people to pm you their Turkish sources. We can't give names on the open forum, I'm afraid.
I was prescribed 60mcg T3 in 3 x 20mcg doses post thyroidectomy and was told to stop taking it without tapering for 2 weeks prior to RAI.
It's likely you will become very hypothyroid if you stop taking T3 and if your TSH rises too much the anaesthetist will not agree to surgery until your TSH is back in range. When is your surgery planned?
Hi @clutter Im due to see my surgeon next week to discuss date im getting married in a few weeks so ideally would like it after that 😓.. coming off t3 is not a good idea then as i dont want to jeopardise my opp back to searching for t3 i can tolerate i only have 19 day supply left im getting very anxious about this :,(
I think you should have a thyroid function test to check TSH and FT3. If FT3 is over range that may delay surgery too. Knowing your levels will help guide how much to reduce your T3 dose. Leave 12 hours between last dose and blood draw.
I'm taking triyotex and feel really good! Have been on it for 6weeks, 75mcg in one dose at 6am, just increasing it to see if I can feel optimum, tried splitting dose but didn't suit me!
As you have said before-we are all different! I will certainly try the Turkish if I get the chance! I was just really grateful to find anything with everybody panicking over Greece.
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Reducing/ stopping T3- advice please 
Is there a list somewhere of T4 and T3 brands with their fillers? Does anyone have one please?
CT scan appointment
T3 (Liothyronine) itching - Cynomel & Thybon
Compounded t3 not working
