I posted before but I think I posted my question wrong.
About 8 months ago, Doctor took me from NP thyroid on to tirosint and cytomel (liothyronine). I felt absolutely amazing for the first couple of months. I had energy to do errands, work and get things done. All of a sudden a few months in, I started feeling horrible panic attacks and anxiety. My numbers were optimal BTW.
My question is, why would I feel so great in the beginning and then have a change? Could it truly be something as simple as low iron or am I entering perimenopause. I know you guys can't know that but now, I'm hypothyroid because I cannot take barely any t3 because of anxiety. I'm just wondering if anyone knows why it would be such a change like that? Now, I'm on a roller coaster.
The doctor change to me and put me on naturethroid which cause dizziness, even more panic in just a general feeling of unwell. I didn't even take it today because I'm too scared to feel the way I felt for the last two days. I think I'm going to go back on tirosint but how can I tolerate T3?
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Anxiety can be a symptom of under-medication. When were those labs done? Because they show serious under-medication. If they were done at the time you started these panic-attacks and anxiety, that would be the reason: under-medication.
Well, that's the problem I'm having. So when I became optimal my numbers look fantastic but panic attacks that in. I noticed panic attacks when my cytomel kicked in. I don't know what happened. Yes, those numbers aren't good now because I wasn't taking my liothyronine as much because I was scared of the panic attacks that would happen. So it's like a chicken or the egg situation happening. So of course, when I took the nature throid three days ago I felt good for the first day or two, then Panic set in again. So it tells me my previous medications were probably fine but I'm not tolerating T3 for some reason now. Even though I was on NP thyroid for 4 years which had it in it.
It's more likely to be the fillers in the pills causing the problems, rather than the hormone itself. But, as I said, they can be symptoms of under-medication.
**Sadly, starting in 2009 and culminating by 2019, most NDT brands are not the good and consistent NDT’s they used to be. The worst ones now as consistently reported by patient are NP Thyroid and Naturethroid. Close behind in ineffectiveness are WP Thyroid and Erfa.
Hey there, how do you feel now? About Tirosit, I had the same problems until I reduced the Tirosint dose a bit. Tirosint is much potent then others levo or you have adrenal problems.
Hey! You know, I'm not so sure. I love it's so pure but I think I have leftover anxiety from the issues that previous stuff caused me. So now I feel like I get a little anxiety when I take the tirisant. I don't know if it's in my head. It's like once you have anxiety other things can exasperated it even if it's not happening. I know that's TMI... I am taking the liquid right now.
I read about the ingredients in the other medications and I feel like tirosint is the best tirisant is the best bet. I did read an article that says if you have problems with tirosint it's only because you're taking too much..because there are no fillers.
I stopped the T3 about 6 weeks ago because of the anxiety. I'm doing just fine on the T4. Of course I don't know where my numbers are right at this moment. I was taking 50 of the tirosint, now I'm on 75 and I'm starting to feel more normal now. That T3 did a number on me for a while.
What do you mean did a number on you for a while? I, too, experienced extreme anxiety on T3 meds. Also don’t convert. Still anxious after discontinuation.
Well, I felt amazing for the first few months and then that's when it dropped. Horrible anxiety, panic attacks, nervousness, feelings of uneasiness. You name it, it was a mess. Took me a while after coming off of them. Unfortunately, everyone on the internet and Doctors tell us we don't convert but after learning a lot about that issue, a lot of us to convert we just don't know it yet or we're not on enough T4 medication for it to do so.
I stopped a few months ago. I dealt with withdrawals from it almost. I'm still having some anxiety issues because I've also learned once you get anxiety from something like that, our minds continue to recreate it and we get so scared to have more Panic so we fear it and have more Panic if that makes sense? It's almost like it causes us to have an anxiety disorder or problem. It is fixable. I'm working on mine and at least I'm not having the panic attacks anymore so I think it does start to slowly get better if we work on the anxiety. I've also been doing nighttime meditations geared towards anxiety and that is helping a little bit. I still have rough days but it's a lot better than it was.
A few things that help a little bit but you can try. The first is L theanine, you can get it on Amazon and then the second thing would be magnesium glycinate. Also, CBD oil helps me a lot at least we're taking the edge off. Also, passionflower. You have to find what that works for you but I have all of those in my Arsenal.
I remember talking to this chick a while back who was on levo+T3 for 20 years with a suppressed TSH. She went to see a new dr and he removed her T3 and increased her levo. And ALL HELL BROKE LOOSE FOR HER. She started having extreme anxiety and tachycardia in the 150+ range. They ended up stopping all her thyroid meds (she was RAI due to Graves), shot up her TSH to 50 in two weeks and titrated her back down with 50 levo, as that has no dye, it took her like 1-2 years to titrate her back down n she was anxious the whole time. ESP when switching the dose. Idk. Maybe it’s just the hormonal fluctuation that causes anxiety?
There are a larger majority of people that can do without T3 they just don't know it. Here is something really good that I read about it he has a lot of information on his site. He dunks a lot of the woo that is all over the internet.
Actually I had the same issue to where I couldn't even tolerate my T4 medication. So what I did with that is a lowered my dose to what I could tolerate and I started on that for a while and then once I felt more even out I slowly titrated myself back up. So let's say that you're on 50 and you need to get up to 75? Just as an example. Then you take 50 until you feel like you're okay and then you split your pill to take 55 and then 60 and is 65, and then 70 that's what I did with that and now I'm on 75 which I couldn't tolerate a month ago. And sometimes you might need to move up and down with your T4 medication. Play around with it a little bit.
I did the same. I lowered my T4 to the lowest dose I had in my arsenal which was 88. I stayed on that for 8 weeks. TSH stayed around 6, mid low FT4. My endo made me increase and I was losing my mind. TSH went to 4.43, but I’m still having trouble since the T3. So now I’m back on 88 trying to chill out. I need to get to like 125.
Follow what it is you need to do. My doctor tried to put me on 75 before I was ready and I didn't care I just went with it. It actually brought my TSH back down to 4.59 which isn't the best but at least it was somewhat and range. It took me awhile to get there. Now I'm finally taking 75.
I need to titrate back up my T4 to get my TSH down, but I just can’t tolerate it since then. Idk if it’s in my head? But I’m very sweaty, very nervous with an elevated TSH , mid low FT4 and low out of range FT3.
Well it could be a bit of both for me anyways. When you're hypothyroid you can experience anxiety and then after you've gone off t3, I have read that it takes people quite a while to get themselves right again. I'm just now able to be on my normal dose after a long time and not have Panic. My panic attacks have subsided. I've gone from extreme panic and tons of anxiety to just uneasiness and nervousness. So I figured it has to get better.
I’m glad you’re optimistic. Maybe my anxiety IS due to being hypo. Who the fuck knows anymore what’s going on. I just know I’m sweating profusely and wide awake and nervous with a TSH of 6. But it is 96 F degrees outside
I get how you feel about that doctor but it also made me learn that there's not a one-size-fits-all. On all of the forums on Facebook you're supposed to be on t3, why aren't you on T3, you should be on T3. I learned that is not like that for everybody and actually a majority of the people would do just fine on T4. It also goes on to talk about that most of us feel amazing on t3 at first and then we don't and we wonder what's going on and we are the ones that it takes forever to get ourselves evened out again.
I’m confused by this post. You see to be lecturing that no one needs T3 but that you’re going to go back on it but you’re doing just fine on T4. What’s the actual purpose of this post?
Who are you talking about? I don't think any of us said that "no one" needs T3 and I never said I'm going back on it (because I'm not) so I'm not sure if somebody else posted something?
Yes I’m talking to you. I can’t seem to see what your asking about? Your post says you want to tolerate T3 but then your replies to other posters say - I’m doing fine on T4. T3 did a number on me. Everyone on the internet and Doctors tell us we don’t convert...... a lot of us convert we just don’t know it yet or we’re not on enough T4. All the FB forums you’re supposed to be on T3. Why aren’t you on T3.
And then the Meanbeannyc says - get FT4 as high as I can.
I mean this post is all over the place and most of it just doesn’t ring true to me. I know we all have different experiences and journeys. But NO WHERE have I read or even had interactions with people that say ‘you’ve got to be on T3’ it’s the complete opposite.
Everyone on this forum agrees that Vits/minerals, diet, health and optimal dosing of Levo always always always come first before trying T3. Doctors don’t know anything about it, even those that prescribe are often not understanding. And getting FT4 as high as you can really is not a fixer for those that need T3. It will cause symptoms.
I just couldn’t get a handle on what you wanted from this post 🤷♀️
Honestly it's way too early for me to be wading through so I'll give the short version for you. This post was actually left alone until NWA had some questions for me so I popped back over. Seems a lot of people had the same issues I did.
Yes, I wanted to be able to tolerate T3 because I thought that's what I was "supposed" to do. I have learned a lot more since then after digging and reading a lot. Now, I realize not everybody needs to be on t3. So yes, my view on it has completely changed. If that answers your question.
I got hyper like symptoms, jittery, anxious. I felt wired. That was at about 80-90% through range and still my FT3 didn’t move beyond 0% through range.
Having FT4 high in range can also lower FT3. It actually downs the conversion. So it’s a fine balance to raising FT4 slowly to find a sweet spot but if you’re not a good convertor then it’s not going to raise FT3.
FT3 is probably over 6 (hopefully) (3.1-6.8) I just had a little hypo this last month and so added some more T3 and feel fine again. It was 6.58 and had dropped to 5.61.
🤷♀️ I wish I had a secret to tell. I was on Levo only for over 10yrs and kept going back to my Gp’s to say that this can’t be what life is. I’d have spells when I felt awesome only to crash and burn every year or twice a year and beg for an increase on my Levo. The last ‘high’ was I think end of 2017/beginning 2018, I then pushed for 200mcg of Levo. Go was sick of me by this stage as I was asking for all sorts of tests and trying to work out what the hell T3 was and how it played TSH part. GP didn’t know anything but insisted my TSH was ‘low enough’ (probably around 1) but she was fed up and said fine if you want 200 have it. That’s when I had weird hyper like symtoms and had to go back tail between legs for my GP to say I told you so! Back to half life again. Everything a struggle but at least living with hypo was easier than living with anxiety and ‘off my face’ feeling.
Then I crashed badly in 2019. Not able to get of the sofa, no sleep, barely eating, weight gain, BO, acne, heavy dark eyes.
Then I found this site, started asking questions realised I was on the right track with T3. Glad I had insisted on FT3 testing even if I hadn’t understood the need so I had a good history which showed bad conversion.
April 2019 I was prescribed 15mcg T3. I didn’t introduce slowly, I took 5mcg 3x per day with a 25mcg drop of Levo. Felt amazing from day 1.
6wks later most of the symtoms had gone except still a little pmt and hard stools so I upped to 20mcg taken 10 x 2 per day. Everything cleared.
Recently like I said I felt a little hypo. Again it was periods and stools. And over the course of about a month I slowly felt myself finding life just that little bit harder. It’s like a clock that needs winding up for me. Added 5mcg and voila. Good again.
Actually not anymore I'm doing pretty well now and functioning like a normal person. I even get bored now if I sit around too long and before that never happened. I think my body took some time to acclimate and get back to normal which took me a couple of months.
Did you increase your t4? What’re your labs looking like?
I’ve been home lately and today getting bored too. Hopefully I start calming down soon. Labs were prolonged so I have a bit more on this super duper low dose. (88). Prob gotta make it up to like 112-125-ish according to labs. But I’ll be switching to tirosint next month (9/1) and titrating up with that since I think I’m having issues with levo absorption.
No I did not increase that I actually decreased at to 50 to help with anxiety and then just recently increased it back to 75. The tirosint with the Liothyronine was actually making me Hyper.
Then you need to take a look at that because I have found that a larger percentage of people do convert without the T3. Unfortunately, too many rely on forums and other ways to get medical information. So maybe you need to take a look at that. I feel better and more even even than I ever did before.
You definitely do what is best for you. You know your body better than anyone. I finally just stopped listening to what everybody told me I was supposed to do and it was best for me. I'm finally coming out of the woods now. Not all the way there yet but at least I'm closer than I was before.
Yeah I've come down a little bit 4.49 TSH and I was on NP thyroid for four years before they changed me. Before that, I didn't have any issues but when I tried to go back on it, I felt dizzy and it completely through my system off.
I’m switching to tirosint next month. I’m excited for that. lol. Synthroid has not stabilized me for longer than 3 days in a year. That’s why I tried T3.
My FT4 never goes up on synthroid and my TSH just keeps going up even when I increase synthroid. Hoping for a miracle on tirosint.
Hey here’s an idea for you! Why don’t you get your TSH down on T4 alone to 1 ish. Then reduce your tirosint and replace it with a small amount of NP? That way you get your switch in conversion without loads of T3, you’d still be T4 heavy. But you’d get the increase in conversion with a source of T3 that you know you can tolerate?
I was wondering if you had started out on Levo in the beginning, and then added T3/ NDT because of not feeling ok on levo alone, or whether you had started out on NDT/levo+t3 ?
I suppose i'm asking what made you add anything to Levo in the first place ? did you give levo alone a try before adding anything else ?
If now is the first time you have tried it on it's own, i'd say 2 months is still 'early days' , and to carry on what you are doing , increase slowly by no more than 25mcg, or even 12.5 mcg at a a time, based on bloods taken 6/8 wks after dose change.
I'd also add that it's wise to wait a bit longer than that to judge how you feel on each dose (more like 12 weeks)
I've not tried T3/NDT, but i know levo takes a long time to settle down in terms of how you feel, and in my experience 12.5mcg is enough to make the difference between 'not alright' , and 'alright'
The time to consider if you would do better by adding something else is when you have got to the top of the FT4 reference range ( making sure you stayed on each small increase long enough to properly judge how you feel on it ), but still aren't functioning well.
Beware of brand changes while you are doing this, it's hard to know what's going on if you get a different brand at the same time as a different dose.
I had actually always been on T3. I was on NP thyroid for years and I was never optimal so a new doctor switched me over to Synthroid. I had a reaction to that. I then started tirosint with T3. The longer I'm off of T3 the more normal I'm starting to feel I'm not having as many up and down days so I feel like I'm starting to even out quite a bit. My TSH has been coming down extremely slowly on a very low dose of 50 with tirosint. It's like it's ticking down like a clock. The only thing about tirosint is you either go from 50 to 75 and there's nothing in the middle of that. My gut tells me a dose of 65 would probably be perfect.
don't know if these are available to you , but it seems there is a 13mcg capsule and also a liquid form.
Or, did you know that its possible to do alternate daily dosing of levothyroxine to get the exact dose you need ? this works ok for Levo because it's got a longer half life than T3.
Thanks, I appreciate the info! The issue is I pay cash for tirosint so if I had to get two separate prescriptions I would pay double. So this is the weird thing. I was taking 75 and noticed heart palpitations that went away. I decided to skip one day of tirosint just to see if it helps my acid reflux and the next day, when I took my medication again.. it was like I was right back to where I started. I really don't want to come off tirosint because I feel like it's the cleanest mad and I don't want all the other gunk in my pills.
Perhaps look into getting the 'liquid in a bottle' form so you could dose exactly?
recommend you ask others here about the acid reflux issue, i've read that it is easy to confuse 'too much acid' symptoms for 'low stomach acid' (there's a simple DIY test to tell the difference,)being Hypothyroid can lead to low stomach acid.
Sorry . i was wrong , it's not in a bottle . I misunderstood the 'in liquid form ' statement on the website. they mean this tirosintsol.com/the-tirosin...
It shouldn't have to be this difficult to get the exact dose should it, you'd think we were asking for the moon. They've managed to figure it out for diabetics and insulin !
Sorry i can't be any help re. the palpitations. I'm fortunate in that i don't know what one is.
I totally get it and thank you! I go to a new endocrinologist in just a couple of weeks. She's the only Ender that I've ever seen that has over 300 five star reviews. I'm hoping she can get me sorted out.
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