I know it takes a little while for the reverse T3 to be out of your system and all that but is it normal to feel awful until then? None of my hypo symptoms are going away and if anything, getting worse.. terrible migraines, severe swelling, sore throat, body aches, and just overall feeling really ill. Is this normal until your body regulates or something?
Feeling awful with hypo symptoms on T3, normal?? - Thyroid UK
Feeling awful with hypo symptoms on T3, normal??
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Nessiam
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take t3, 1x per day..maybe dose is too low or you are dividing it. It did take me about 4-6 weeks to tolerate over 25 t3, without getting horrible hyper symptoms. i felt the same when switching to all t3. Unfortunately, it is not enough to make me well. I have autoimmune disease, so i need to heal my immune system first, before i have any hope of doing better. Plus, i am missing cortisol and growth hormone. Maybe you will have better results with t3 than i did. I am not a usual case.
I'm sorry you didn't have a good experience. Are you saying it's better to take all at once instead of split?
I had the reverse experience. I was happy split dosing on T3 then I tried to amalgamate doses with the aim of getting to once a day dosing. It was a disaster, which I still haven't really recovered from. In the end I switched to NDT, but I'm still not feeling as well as I did on the T3 when I was split dosing.
I think the people who do well on once a day dosing have different problems to those doing well on split dosing.
that is what Dr. Lowe said MUST be done, in order for it to saturate the cells...dividing doses did not help the many hundreds he studied, which had mostly thyroid hormone resistance and body pain..fibromyalgia. splitting doses did not help these people to regain their health.
Morning, how long have you been on the T3 only for?
It took me 3 months before I was back on my feet taking T3 only, I titrated it up very slowly, starting on only 10mg split in to 2 doses of 5mg, one on waking one at lunchtime, then every week I increased one of the doses by 5mg until I was on 20mg, then I held at this for 4 weeks. It is important to keep a daily check of your BP, heart rate & temp whilst starting on T3, it not only shows how your well your body is tolerating the T3, it is also useful to look back on when you feel you need an increase as you may be able to see these signs dropping.
After 4 weeks I had my bloods done which still indicated a room for improvement so I increased by 5mg again, then 4wks later I increased again to my current dose of 30mg per day, this is where I am currently.
It is also very important that you have good levels of Ferritin, Folate, Vit D & Vit B12 to enable your T3 to work at its optimum.
Hang in there it will be worth it in the end, I know its hard when you feel like you are getting no where, but stick with it, T3 only is nothing to be scared of, it literally saved my life.
Jayne
I've been on it for about 2 weeks or so. Thank you for the encouragement! I'm glad it's treating you well now!
That's not much time at all, it can take 6-8 weeks for the RT3 to get out of your system, don't give up.
Hi aineyy, I'm from the US and have been reading your posts feeling very confused. I've never heard of anyone taking T3 only. You make it sound as if it's the preferred treatment. I was on Synthroid for years and then switched to Armour last October. I did a lot of research before I switched to an NDT but nowhere did I read about taking T3 only. Could you tell me what the benefits are?
I'm currently off of all thyroid meds because Armour caused me to lose over 50 pounds (from Oct. '15-July '16). I was way too thin so last week I decided to stop taking it in order to stop losing weight! It was scary but I didn't know what else to do. My doctor doesn't really know anything about Armour. But when I read these posts about T3 only it made me curious about why you prefer it to the T3, T4 combination. I don't know which med I'm going to start once I gain some weight. I've gained 6 pounds since I stopped taking Armour last week.
I'd appreciate any information you could share. I'm really at a loss, feeling fine physically but I worried what could happen when my body responds to no meds. Had blood work done today so I don't yet know where my levels are.
Hi
T3 only is the preferred treatment for me I am unable to take thyroxine, as it makes me very ill & my body just seems unable to convert the T4 to the T3 that all our bodies need to function. Taking T3 only is not common, but I have come across a few people that are on this regime.
I just think we are all different & need to listen to our bodies & find the most suitable treatment for us, this can take some time, patients is definitely a virtue that the Thyroid patient requires a great deal of.
All the best
Jayne
Aineyy, thank you for your response. I agree that we are all very different.
I'm just trying to understand what to do. No one I talk to seems to understand the power of our thyroid gland. My doctor has no real knowledge on it either. All they do is check TSH and suggest synthroid!! It was only through research I learned about Armour. But it must not agree with me because I lost weight continually the entire 9 months I was using it. And I started out at a low dose and slowly increase to 4 grains. I thought that was too high because I wasn't feeling great and I couldn't stop dropping weight. When I decreased the dosage I became irritable, anxious and very depressed - it was awful. By this time I looked anorexic so I just completely stopped!! I was terrified. So now over a week later (still on no meds) I feel better than ever. I'm just afraid if I had a build up of RT3 or went hyper it's eventually is going to hit me hard. But I really don't know what to do. Can't wait for my blood work results cause I'm panicking a bit her. God, I hate this disease. No one knows how to treat it and doctors think you're crazy.
Do you think it's dangerous to stop the meds like I did to clear out my system? I feel so good it kinda feels right.
Thanks for your help I appreciate it
Sorry you are having such a dreadful time, I got most of my knowledge from reading books, I would recommend the following 2 books
Stop the Thyroid Madness: A Patient Revolution Against Decades of Inferior Treatment & the second book Recovering with T3, by Paul Robinson, both are available on Amazon, they really are worth it.
Best of luck to you
Jayne
I had similar problems when switching from Levothyroxine to NDT two months ago. I suspect that I may have built put T3 levels too quickly and that this triggered some feedback mechanism leading to hypo symptoms. I cut down the dose then increased it again much more gradually, spreading it into two doses per day and now feel much better.
Are you saying he got his licenses revoked because he was wrong?
I would have imagined that Scandinavia was further forward than us - that is shocking and extremely sad.
I've learnt loads on here, and have learnt something new here today. It's looking to me like splitting a T3 dose into two or three doses through the day allows the body to accept a higher dose. I guess it's obvious really! - adding an extra 10mcg with main dose is too much for the system .
..no, not what Dr. Lowe did.
I tried T3 for 3 weeks and gave up. Best product is Slow Release NDT. Make sure your vitamins are in top of range (very important) B12 must be 600-900 etc. If not your body cant convert T4 in NDT and T3 will just pool and become RT3 when you go toxo
slow release of anything did not help any of Dr. Lowes patients. T4 is the only thing that becomes rt3, rt3 will stop the t3 from reaching the cells.
@faith63
I could not take what Australians call compounded pharmacy NDT (porcine) at anything like quantity I needed. I would get a head ache, and tingles in hands and feet. Best I could do was 1/2 grain per day split in two (7am - 5pm). I discovered Slow Release and am now up to 3 grains per day (7am, 2pm, 10pm and 10mcg T3 @ 3am) . I still get a very slight tingles in feet. (My issues could have all been low vitamin levels as I also corrected these at the same time I found SR NDT.
Re RT3 - my understanding is your body gets rid of excess T4 by converting it to RT3. Something like 40% of T4 becomes RT3 depending on emotional stress, exercise , temp, sickness etc. However when I was only on T3 I had a blood test and I still had heaps of RT3 . So I figure you convert excess T3 also. When I accidentally go hyper on NDT - I have to go running and burn the stuff off - I find that's the quickest way to feel normal 2-3 hours - If I dont it takes my liver and kidneys a coupe of days to sort things out.
the ONLY thing that makes rt3 is t4 , so you must have your own thyroid functioning or the test had an error. I charted mt rt3 for 16 months and it went down as the dose of t4 decreased..it was still a tad high on 35t4, even though my free t4 was below range.
I have gone hyper on t3 and my glucose and liver enzymes were very high and creatnine, very low, showing wasting of muscle.
@faith63 - yes I would still have some thyroid function, and the blood test was about 2 weeks after starting T3, so I could of had RT3 hanging around from earlier NDT. I found T3 hard to get right, I had cold hands and feet all the time. I had started on 3 x 20mcg per day - felt great for a few days and then start getting cold feet. If I had been on NDT I would have taken more but 60mcg of T3 seemed like a heap. I tried 3 x 10mcg and still no joy. Then I found SR NDT and have been very happy for about 2 months now. But like I say I also bumped the vitamins up heaps. The thing I would really like is a blood test like diabetics have - wouldn't it be magic to zap your self and know exactly where your T4/T3/TSH/RT3 all were 2-3 times a day
We don't need all this thyroid testing! In the old days, doctors relied on ndt and raised the dose until the patient got well. With ndt and t3 only, you go by symptom relief, not labs. This would not have worked for me however, because apparently my hashimotos keeps me from feeling well, no matter what i take. t3 dose is best at one x per day to saturate the cells. Looks like you needed more t3, with those obvious hypo symptoms.
Jamesa10, hi I'm from the US and was reading your post. You seem to know so much about how your body responds to different levels of RT3 levels. I probably sound naive but it's quite difficult to get the proper information about thyroid issues.
If you don't mind me asking how do you know when you've accidentally gone hyper? How do you know that is what is causing your reactions?
I've recently stopped taking my NDT (Armour) a week ago. I had lost over 50 lbs. after starting it. I didn't know what else to do because I can't afford to lose any more weight. I actually feel much better since I've stopped taking it and I thought it was because either my T4 or T3 levels were too high or it was RT3. Or maybe I became hyper. I'm not sure what to do next. I had my bloodwork done today so once I get the results I'll have a better idea about what's going on. I'm just afraid I'm going to hit rock bottom at some point since I'm taking no thyroid meds at all. My doctor doesn't know anything about Armour since the gold standard here is Synthroid.
I would appreciate any advise you could give me since you seem so familiar with the symptoms of overload of the different hormones. I'm really at a loss, there's no one to turn to for help. I've gained back 6 pounds since I stopped taking Armour and I'd like to gain a bit more. But I'm afraid I'll start losing weight again if I go back on Armour. Please help if you can.
LiaDiGee
You got me wrong - I'm a numpty like the rest of them. But I am prepared to try stuff and see how my body responds.
Hyper for me = heart racing, tingling hands and feet, random twitches, crawling scalp.
Gluten Poisoning = Tingling tongue, mouth and lips and weird feet. I get no bowel pain etc.
Hypo = Cold Feet and Hands at night, temp low 34.2 C, heart beat=40s, loosing weight, WBC falling , Kidney function decreasing , anxious .
I also loose weight - but when not getting enough NDT, I am now on 3 grains plus 10mcg T3 per day and put on a kg in the last week. I've had others on this forum who say - you just have to eat more. I cook a massive hot breaky of eggs, bacon, baby silver beat, cheese. Lunch is reheated dinner from the night before, and then dinner is steak, potatoes, GF pasta etc. Lindt choc for desert most nights. Graze on almonds and peanuts all day at my desk, 2-3 bandanna's. And with all this I'm only just not going backward. Welcome to NDT, but I wouldnt have it any other way - the synth drugs just kill me with side effects.
Jamesa10
I think it's amazing that you know your body that well. I never know what the problem is when I feel awful. But I don't get the side effects you do.
I have been on no meds for over a week and feel better than ever. I don't know what to attribute that to. I'm just going to wait it out and try to put on some more weight.
Thank you for the info.
You have to take your Thyroid medication. You will do organ damage if you don't. You may need to change things around so you feel better but you have to keep taking it.
Hi Jamesa10, several people have told me that I have to take my meds. The reason I stopped was because of my never-ending weight loss. I can't afford to lose more weight so I'm clueless as to how to handle that. I stopped over a week ago and have gained 7 pounds and I feel great.
Do you think my problem is just that Armour doesn't agree with me and I should try another NDT? I truly am afraid to go back on Armour. I don't know how to determine what to do. My dr knows nothing about Armour so I'm on my own. I appreciate all of your advice.
You must take some form of Thyroid medication. And you will put on weight if you eat heaps - even on NDT
Jamesa10 - My problem is that I'm not sure yet which med is right for me. Being off of all thyroid meds for 2 weeks and feeling better than I have in a long time has me confused. Why do I feel so good? I have a free 15 min. Consultation coming up on the 16th with a great holistic dr whose too far away for me to visit. He knows so much about this disease, I can't wait. His name is Dr Brad Shook who has a group on Facebook, if you're interested. His office is in North Carolina
I so appreciate your help but I'm scared to go back on meds because of the horrible depression I felt when I lowered it. It was hell. I'm in limbo right now, very confused.
It all depends on your dose and how long u have taken to up that dose. If u have just decided an arbitrary amount, stopped t4 or NDT and stuck in t3 u may well be overdosed as the t4 will take up to eight weeks to clear. Similarly until the t4 is cleared how can you know your optimism dose? This is discovered by slowly introducing and increasing. You could be under or over dosed. Are you taking pulse, HR and BP before and after doses to monitor? Are u aware of the symptoms of atrial fibrillation?
That should be optimum dose but my iPad thinks it knows better than me!
The issue in the early days is not clearing rt3 that will automatically clear the longer that elapses between when you last took any t4, once the t4 is gone no more rt3 can be made, the issue is clearing t4 and taking that slowly to ensure you're not overdosed in the meantime. Do you understand the mechanism of t4 to rt3 and t3 etc?
stopthethyroidmadness.com/r... The information on this link may help. It normally takes 10 - 12 weeks to clear R t3 and you can feel pretty lousy during that time since the R t3 is blocking your cells' ability to absorb t 3. It is helpful if you have blood tests done to ck B 12 and iron (especially) so you can correct any deficiencies in order to avoid high R t3 levels in the future.
Hi Phoenix23002, is there a connection between iron levels and high Rt3?
The article on the STTM website (I provided the link) mentions that inadequate iron levels can be a problem. Here is more information on low iron in hypo sufferers. stopthethyroidmadness.com/f...
and... "3. Can make it difficult to continue raising your desiccated thyroid (or T3), patients have reported, causing either pooling of one’s T3 levels (T3 going high and not getting to the cells) or rising RT3 (the inactive hormone)."
Thanks Pheonix
What is your dose? While I was on T3-only for over a year, I found that I needed about 0.82mcg/kg body weight. At 78kg, that works out to 64mcg daily for me (which I took in multiple doses throughout the day, but I'm not certain that is necessary).
If I am not mistaken, I think you already had some excellent advice about getting tested to make sure you had rt3 before trying t3 only, you have also been given excellent advice about rushing your changes from on emed to another, it takes at least 8 weeks on other thyroid meds before you can tell if that dose is working at all but you seem to be jumping from one to another pretty quickly, please, I know you are desperate to feel better but this is not the way to do it and the possibility is there for you to cause more damage than good and we sincerely don't wish that upon you
Eljiii, am I understanding you correctly that 5 doctors lost their licenses for prescribing T3 or NDT to their patients?? That's so terrible, I can't believe it. Their patients did well on the T3 or NDT so those doctors were fired simply because they weren't allowed to prescribe them?? I'm from the US and don't know much at all about your NHS. So is it unlawful for doctors to prescribe such things?? If so, it sounds like Synthroid doesn't want doctors prescribing anything except their product. I've read on here that thyroid patients in the UK are prescribed the generic form only. I guess it's the same as the US then, Big Pharma is all powerful!!!
I'm in the U.S. also and had a difficult time getting Armour from my doctor. I kept looking around for someone who would and found a female doctor who was agreeable. Even so, all my friends are on T4 and not doing well.
There was a wonderful doctor on the internet who had his license taken away for getting people back their health. He was ahead of his time and his archives are still available. askwaltstollmd.com/articles...
Heloise, have you heard of Dr. Brad Shook. He is a Intergrative/Holistic doctor who has a group on Facebook. If you search for The Office of Dr. Brad Shook, you'll find that you can join his group. There are many hypo/hashi patients with whom you can share stories and get great info. Dr.Shook has many videos he shares with the group that are wonderful. He also offers long distance appointments,etc. He is located in N. Carolina. I find it very beneficial because of the amount of wonderful information provided. I find it to a very important resource.
Hi Lia, I've been out for a few days. I just looked Shook up on you tube. He started out by saying there are 24 ways that hormone levels may look normal and yet you feel bad. This is exactly how Dr. David Clark set up his 24 videos for low thyroid. Maybe he studied at the same place. I will definitely watch and see if they are similar or if something is new. Dr. John Bergman is also very thorough when it comes to explaining the intricacies of many dysfunctions as well.
I'm really going beyond some of this and more and more into biofilm infections. It comes up a lot in all different places. Like this:
I tried this product on my son, as recommended by his pediatrician. He had a resistant staph infection in his gut for over 3 years that resulted in bleeding sores on his legs which he would scratch throughout the night. We had tried diets, vitamins, minerals, herbs, amino acids, probiotics, antibiotics, Interfase etc. However after a month or two I stopped the Interphase because there was no difference in his symptoms. After a great deal more research, I found another biofilm enzyme designed by Dr. Nicholas Gonzalez. It is called Pancreas and it is made by Nutricology, you can get it on Amazon. After only two days, my son started to have major improvement, and he keeps getting better and better. His legs have real skin on them now, he is gaining weight and he even sleeps through the night now for the first time ever!
From my research, it appears that one of the major components of biofilm is fibrin. It is the sticky stuff that holds the biofilm together. Pancreas by Nutricology seems to eat away at the fibrin much, much better than Interfase did for us.
Heloise - Very glad to hear you found something to help your son. That's wonderful.
I have a free 15 min. Consultation on the phone with Dr Shook tomorrow - can't wait. And I've watched Dr Bergman's videos. I love him as well.
Hi Lia, I've been listening to Dr. Shook and I think you are going to be in good hands. He's very similar to David Clark. I imagine he is going to check your methylation and a bunch of tests that other doctors don't usually do checking out your body chemistry. Also anemia and blood sugar problems.
The other response I sent you was an example (not my son) of the pancreas supplement that can attack biofilm....Dr. Shook will look for those as well. It does sound like it's going to be very expensive which will be well worth it if you can afford it.
The test from 23andme has gone from $99 to $199 so check to see if his is going to be more than that or if he can get you a discount.
I'd like to hear all about it.
My main Question for Dr Shook is whether or not my decision to stop taking my thyroid meds. I have completely stopped due to the terrible side effects. It's almost 3 weeks now since I quit and I need to know if it's safe. I don't want to take them since I have felt better since I stopped than I have in a long, long time!!
I know he is not a fan of prescription drugs so I'm hoping he can advice me about the safety of stoppingcold turkey. People have told me I should not have stopped my meds but I'm hoping they are wrong. I'm so excited to talk to a dr who actual knows about thyroid disease and can actually answer a questionno one else can. I'll let you know the results.
Hi Heloise, I just wanted to check in with you after talking w/Dr Shook.
He was so wonderful, my free 15 min consult turned into more like 45 mins. He was very generous with his time and couldn't have been more helpful. He wasn't that concerned that I stopped taking thyroid meds. and confirmed what I had read (low TSH, T4 and T3 could mean it's pituitary suppression). So, in fact, I may not actually have hypo, the basis for my diagnosis was simply a TSH test.
Dr Shook said that it sounds like I'm on the right track, I just have to keep an eye on my T3, have blood work done more often. And then if necessary I may have to go on a thyroid med. Since I didn't respond well to Synthroid or Armour, he suggested I try Tirosint (not sure of spelling) but it's a synthetichormone replacement. And then maybe if I don't convert to T3 well, I might have to supplement that as well with a T3 replacement.
All in all it was wonderful to be able to talk to a Functional doctor who understands thyroid problems so well.
I recommend Dr Shook very highly.
That's wonderful, Lia. He has a very nice way about him and his explanations. Do you know what he means by pituitary suppression? I wonder if it's in another video. It may mean that your adrenals are keeping your TSH up so as not to tax your system.
Dr. Bergman seems to think that organs always function as they are supposed unless an outside force causes a dysfunction. Dr. Clark talks about an attack on your own T4 and T3. That may be why you didn't do well on natural hormone.
youtube.com/watch?v=2xm60Lb...
Well in my case my TSH, T4 and T3 are all low. I had read that this can be a pituitary problem rather than thyroid since it all starts with the pituitary.When I mentioned it to Dr Shook he agreed that it certainly could be pituitary suppression. I didn't push the issue because there was so much to cover within our consult. But I intend to do some research on it.
And you're right he is an extremely kind man who gives of his time to help patients. I couldn't believe how much time he spent talking and "listening" to me. And it's all free. I think that's how you know a dr is doing it for the good of the patients and not to make an extra buck. I love him and feel blessed that I became aware of him. He's one of the few Functional doctors out there who are so needed in the med community today.
I simply can't believe what I'm reading!!! Endos complained that too many patients were on meds?? So then these patients don't get the meds they need and they continue to be plagued by these horrible hypo problems. That's incredible.
I thought things were bad here in the US the way Big Pharma has so much power. But our doctors are allowed to prescribe NDTs, etc. I'm just shocked that this goes on. It's truly sad that doctors who care for their patients and prescribe what they need to lead a normal life can lose their licenses!!!
So then the patients have to find another source to purchase their meds without insurance???
I got hacked by internet websites. Read this link youtube.com/watch?v=v8NfmNZ... here into your copy-paste and into the address bar to see a video.
hi nessiam
i'm currently taking t3 and its a rough ride for me also. i'm two weeks in now and my body aches so bad more than it every did b4 i feel my brains fogs a lot better but my muscles are very week i normally go to the gym but on this t3 it impossible right now.hope you feel better soon.
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