Stopped levo - now only on T3

Hi, so I've been on 50mcg of levo for 4/5 months now with added T3 gradually increasing to 82.25mcg now but I ran out of levo and thought "why am I taking this still?" So thought I'd just stop and continue with T3...

Almost a week later I started to get severe lower back pain which is increasing and my night time anxiety is creeping back in - last night I had a fast thumping pulse throughout my body with waves of overheating.

Can this be a coincidence? I thought with such a low dose of T4 it wouldn't make a difference? And I read on other posts how it takes a week for the T4 to leave the body so would be fine to just stop, especially as I'm still taking the T3. Bit confused as I was doing really well, things were improving finally - I had a night out last weekend with minimal hangover and bam! I feel like I'm going backwards again with a new symptom of chronic back pain πŸ˜’

Has anyone else has experience with this time of dosing/stopping levo?

Thanks

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  • What is the total of T3 you are taking?

  • 82.25mcg as stated in my post

  • Time and again we see that some people can go to T3-only and seem fine while others really need at least some T4.

    We berate doctors for making big changes to doses - like more than 25 micrograms a day. It is not a good idea to drop 50 micrograms of levothyroxine just like that. It could very possibly make such a large difference.

  • Sorry to sound stupid but berate? My dr didn't tell me to stop T4, I just did it as I ran out and because I'm up to 82mcg of t3 I didn't think I needed it as it seemed a lot in total even though I was feeling fine. Regretting it now

  • Even so, it was not a good idea to stop 50 all at once. It would have been better to reduce by 25 mcg, then a few weeks later, the other 25. It could be that the shock to your body, of just stopping 50 at once, has caused your aches and pains. :)

  • Ah ok, feel stupid now. Should know the complexities of all this by now πŸ™„ do you think reintroducing it slowly again would be wise?

  • Depends. What is your ultimate goal? T3 only? If so, now you've done it, ride it out. If you want to just take a lower dose of T4 with your T3, add in 25 mcg.

  • Ultimate goal is to feel good with whatever I'm taking - don't really care. It would be nice not to have to get the levo from the Drs every month so that was another factor for me to stop it. I know this isn't a LDN group but I've been taking that for 4 weeks now which could be improving my hashis therefore reducing my need for thyroid meds. I will get the test done asap. Thanks

  • Well, you're not going to know if you feel good on anything until you try it. So, you need to decide what you're going to try next.

  • I'm trying to get off it oils can get us normal too

  • what do you mean oils?

  • We berate doctors ordering big does changes when laboratory tests (and patient symptoms) indicate at most a tiny adjustment is needed.

    I was not pointing a finger at you - but at those in the medical fraternity who make large adjustments.

  • My Drs aren't involved in my medication anymore, I've been self dosing for months. My new specialist is more open minded & just said to only increase my T3 every two weeks and he didn't tell me to stop the T4. I did that on my own accord. But I know what you're saying - that's why I went solo and forked out big bucks to see a more holistic & open minded practitioner

  • My ins does not out I was on a dr like that

  • My T3 is up it's likely to much medication I was on Armour however my dr says endos only like T4/T3 meds and no Armour at all my med was raised 3 times cause it was low now to high why not just take less Armour instead

  • Purplejuicy,

    82.5mcg T3 is equivalent to 247.5 Levothyroxine so it is likely that T3 has built up and you are now over medicated. I suggest you order a thyroid test including FT3. thyroiduk.org.uk/tuk/testin...

  • My specialist (someone listed on the thyroid.co.uk website) didn't seem concerned about my T3 dose when I saw him last which it was up to 75mcg at that point. He told me to raise slower though so 2 weeks in between which I have. But it made me think I'd surely not need this T4 on top which is why I stopped but now I'm thinking that wasn't a good idea and I should introduce bank in again and maybe drop my t3 a little?

  • Purplejuicy,

    I suggest you have a FT3 test to check levels and base any further medication or dose adjustments on the results.

  • Ok will book an app first thing Monday morn. Unlikely to be able to get it done for another week or so. Do you think dropping down slightly on my t3?

  • Purplejuicy,

    If you feel overmedicated then reduce dose. Otherwise I don't have an opinion without seeing your results.

  • It's hard to differentiate the difference between under & over right now - last night I felt very much over with bad throbbing pulse throughout my body but that's typically an adrenal thing with me. Whereas throughout the day I feel under medicated with bad aches & pains and struggling to do anything without needing to sit down after.

  • THat is quite a high dose of T3, I would imagine you're over medicated also but couldn't say without results. 60mcg is normally considered maximum dose for adults on T3 and many take even 40 or 50. I take 30 plus 25mcg T4 and I don't produce any thyroid hormones of my own.

    GPs often can't get a T3 results so depends on who you are hoping to see. You could order a quick test from medichecks or blue horizons if you really wanted to know. I've been in this situation before and felt just as tired as when hypo as my body as trying to work too fast which caused me to be exhausted.

  • Hmm ok. It's just my specialist didn't seem concerned about my t3 dose and told me to keep increasing gradually. I've never really understood the usual mac t3 dose/level.

    My gp is pretty good now as she understands I've wanted to self medicate so she includes t3 in there although she's off on maternity so not sure how viable it is now πŸ€” got me worried now! Confused what to do in the meantime?! I just need some relief from this pain

  • My doc is quite good too but the labs literally wont do it for him - they refuse lol.

    Well, just do what your instincts feel. I would say the minute I lowered my dose when in this position, I felt better quite quickly within a few days so not sure it will harm you much to try?

    I've been on T3 only for nearly fifteen years and I would point out that if you were only on 50mcg T4 before and your tsh was within range - you've effectively quadrupled this dose, if not more?? For me personally, 50mcg T4 is equivalent to 20mcg T3. 25mcg T4 for every 10mcg T3.

    THe maximum doses are normally to do with the maximum most people need to have tsh low and resolve thyroid symptoms. However, some need less as can depend on body weight etc. And occasionally, some people need more which might be down to hormone resistance or absorption issues or inflammation and so on. When I had these issues, I needed 60mcg but this have improved now :-)

  • And yes doc should have swapped you over slowly a little at a time and retested to see where you are :-)

  • sorry i haven't been able to go in full detail of my back story on this post - i haven't been using any GP advice for almost a year now so i've been self medicating and private testing - no doctor told me to come off of T4, i didnt that on my own accord which in hindsight was a bad move. i was previously on 100mcg of T4 only back in july 2016 but i started getting high RT3 and felt terrible again so i added 6.25mcg of T3 every 5-7 days and dropped down to 50mcg T4 which i haven't changed since august. i've just been gradually increasing my T3 as per advice on here and the specialist who I'm now working with didnt seem to have any problem with my dose when i saw him last (think i was up to 75mcg) and he just said continue raising but slower so only 6.25 every 2 weeks - which i have been. not had any issues at all, no over active feelings, more energy, mood much better - until last week when my back raged with agony which is coincidently exactly a week after i stopped taking the levo. I'm so confused again, thought i was getting somewhere but now I'm really worried I'm taking too much T3. not sure whether to add the T4 back in or ride it out and drop my T3 dose slightly...? I've only taken 50mcg of T3 today to see if i feel any better.

    Thanks for your helpful advice, appreciate it.

  • If you do have too high T3, it will take a few days to clear although not as long as T4. Problem is you also have no idea if even 50 is too high for you as for me this is more than 100T4 so you could continue to get problems and think it's because you've dropped too much. Would be really difficult without blood tests.

    THe back issues could just as easily be dropping the T4 so quickly as too much T3. You wont be able to know unfortunately.

    Problem is the blood test results and full effect of a dose change in regards to symptoms takes 6-8 weeks minimally for your body to adjust and find out how that dose is going. So if you kept on the same dose, it would take another month before you felt full effect. It normally takes me a little longer to adjust and takes me 3 months so doing it so quickly will not inform you how you felt on a particular dose and what the changes meant and you can become over medicated easily. And with massive changes, it's hard to know which did what and why things are happening. It's always good to make a small change, wait to see how you feel and retest two months later to see where you can go from there. We're so sensitive to these hormones, slow and gradual is the best way. For example, my tsh was 11-12 just six weeks ago, it is now 2 with a teeny dose change increase.

    I don't think anyone here would recommend increasing so fast. At the most, maybe if a choice between 6 or 12 T3, they say to try the six first and then if no adverse reactions to add the other six but they would always recommend a blood test after this to see where you are before increasing again and always after 6-8 weeks.

    On the plus side, you will learn from it. The longer you're on these things, the easier it is to tell exactly what is happening as you get used to the ups and downs and pin point certain symptoms to work out whether hypo/hyper. As much as my symptoms are very similar, I only get a headache if low and only get weird arm feelings and worse at night if too high lol.

    You'll get there so don't worry :-D

  • On the t3 stop the thyroid madness forum on fb many have told me they didn't get optimal until reaching 80mcg and sometimes more so this is really conflicting advice, very very different opinions on dosing and I'm utterly confused. I appreciate the knowledge and advice though, will have to work it out for myself and go with my gut on what to do next 😐

  • Yes, unfortunately, without recent blood test results, if would be bad of us to say exactly what you should do as we might be wrong so can only say what our experiences are. Some people do need higher doses due to absorption issues/resistance etc but not the norm. I did used to need a higher dose but only because of other unresolved issues which were meaning I wasn't using it effectively but still too much in my blood and this was at 60.

    Well 50T3 is more than the 100 T4 you were on so at least you know you're not going to harm yourself by becoming hypo lol. I'm assuming you were on that dose a month or so ago if increasing every week or two so if you were still functioning then, you'll be fine.Otherwise it's hard to suggest either way?

    Maybe try the lower dose for a few days as T3 clears quite quickly in comparison to T4 and if you notice any improvements, you will know if you were over medicated???? I would say it's preferential and less dangerous to be a little hypo than hyper until you can get some blood tests. SO whatever you do, at least make sure you leave at that unless major problems and retest before changing again??? Maybe lol :-D

  • What are the weird arm feelings saggy?

  • Don't really know how to explain them lol. Whenever I have something at a toxic level or a level my body doesn't like, for some reason I can feel it in my blood in my arms and they feel funny and hurt lol. If I let it carry on, I end up with back pain stemming from my kidneys sometimes depending on what it is but always arms first???? Whereas when I'm hypo, my legs just hurt?

    It even happens when I've pigged out and had way too much sugar lol!

  • Easy over will have energy under no energy level

  • No for me, I always lose energy more when I'm hyper and struggle more and tend to crash more unlike when hypo :-)

  • yeh not so easy for a lot of us. over & under is almost identical for me

  • Low tired high lots of energy

  • 82.5mcg is a high dose of T3. I'm currently taking that amount myself - along with 1 grain of NDT - but I've built up to that over a very long period of time. It looks like I might have thyroid hormone resistance, which is why I was trying T3 only but then introduced some NDT too as I couldn't get past this amount of T3 without palpitations and other problems. It does sound to me like you've increased your T3 too quickly - along with stopping the levo quickly too. Hope you can find a good level for your body.

  • I have never increased quickly, I've introduced 1/4 of a tab (6.25mcg)) every week or two weeks now so I've never experienced heart palps - until last night. It was more adrenal issues last night but I'm starting to wonder about my high dose of t3. I know dropping T4 suddenly was stupid now.

  • Do you know how good your adrenal function is at the moment?

  • well this was the main thing we were working on with my specialist - my cortisol was really high at night & first thing in the morn so i've been taking seriphos, holy basil, zinc & melatonin at night for about 3 weeks now as per his advice and it's really improved my sleep - until last night that is. it felt like my adrenals gone right back to square one and feeling quite tired and unable to tolerate light exercise so I'm not sure whether the sudden drop in T4 & a high dose of T3 is causing issues for my adrenals again or it's the other way around?? what do you think?

  • I would highly recommend buying the following book by Dr Peatfield

    amazon.co.uk/Your-Thyroid-H...

    In it he covers the various treatments and the way to treat the condition holistically covering a lot of aspects. He lays out a number of protocols for tackling adrenal fatigue. I've followed his first protocol which is to support the adrenals using vitamins and minerals. I saw him last week and he felt that I needed to go onto his second protocol which is the use of adrenal glandulars so I'm about to start that.

    I'm hoping that a more effective adrenal support is the missing key for me. Like you I've taken high doses of T3 and have been over medicated. However I'm not sure if that's down to dosing strategy (rather than the full dose in the morning, spreading it out through the day) or the need for adrenal support or perhaps not getting on with T3 and perhaps switching to NDT which I haven't tried yet.

  • thanks for the info but i am happy to stick with being under the care of Dr Bernard Willis in the natural practice who is guiding me with my adrenal dysfunction, sex hormones and hashimotos. he's prescribed me LDN which has fantastic studies on lowering antibodies in autoimmune so i am hoping to one day wean very slowly off the thyroid meds as my antibodies lower and my thyroid starts functioning better. I'm trying very hard to stick to a autoimmune paleo diet too along with several supplements like B12, probiotics, collagen, l-glutamine & vitamin C.

    i do not feel i am over medicated at all, in fact i feel the opposite since stopping my T4 abruptly which i now know was a big mistake. Dr Willis was happy with my dose at 75mcg and happy for me to continue raising every 2 weeks if i felt the need to. I believe my body may need some T4 along side the T3 so going to reintroduce it again slowly. I tried NDT in march last year with terrible side effects but i now understand that was because of my adrenal issues. i am no keen to try it again as i was feeling much better on my t4/t3 combo. every one is different as we all understand. be cautious of glandulars, I've read lots of studies and articles from professionals including amy myers who is a top thyroid specialist saying they can be too much for the body and switch off out own bodies capability of producing it's own adrenal hormones. but then i know some people do well on them, guess you never know until you try :)

  • Yeah that stuff you're taking I read everybody with Hashimoto's should be on I don't know why the doctors don't try all that

  • ,y dr has not checked those he says stress means nothing at all boy he dumb

  • These diseases are caused by a poor functioning immune system so if you have graves disease or Hashimoto's is coming from inflammation I'm taking pain pills now to

  • it's actually caused by gut issues - all autoimmune disease begins in the gut - leaky gut to be specific which causes inflammation

  • My adrenals are fine other medications can cause fatigue and said his Lyme disease

  • Adding that much every two weeks up to the dose you're on is increasing too fast to be honest. As mentioned above, it's equivalent to nearly 250mcg T4 :-)

  • I was only following the advice I've gained from STTM forums on fb along with the professional I saw 2 months ago so I'm very disheartened to now be told this is wrong and too much. Would it be safe to drop down to 50mcg a day now to see how I feel or am I to drop down very slowly too?

  • It takes less weeks on Armour

  • Armour can be increased every two weeks because you'll see changes very fast

  • i do not like NDT, i won't be trying it again in a hurry but each to their own. heard wonderful stories from a lot of people getting better on it. just wasn't for me

  • 25mcg a week is fast. Most people would increase 5mcg every 1-2 weeks if they were going off symptoms. Longer if you're basing it off lab results.

    Unfortunately heart palpitations are symptoms of both over and under medication so that's a tricky one πŸ˜“

    I had heart palps as well when adjusting to t3. Mind you I take a much smaller dose than you, it took my a week or so to adjust and the palpitations left.

    Do you have the palpitations all the time, or at random times? Or does it correlate to your dosing times? (Happening within 1-2 hours after dosing and lasting a few hours)

  • I never said I increased by 25mcg a week- I've increased 6.25 (quarter of a tab which are 25mcg, sorry if I've confused it somewhere) every 2 weeks as per the advice from my specialist as was feeling fine with it.

    So my symptoms were more fast pulse which were throbbing throughout my body and waves over rushes & overheating - insufficient adrenal type issues really. Or that could be deemed as over medicated of course but I am much more familiar with adrenal problems as have had them for years on/off even before I was taking t3. I've never experienced heart palps whilst raising so I don't believe I have become over medicated, I've experienced more heart flutters and under active type symptoms on the last week which i believe to be because I stopped the T4 so abruptly. I'm going to reintroduce the T4 slowly & carry on with my dose of t3 as per the advice from my specialist. I don't want to mess around with things as I was on a good path until I stopped the T4

  • Ah ok I understand the confusion, I thought a quarter of a tab was equating to 25mcg. Increases of 6.25 is just fine.

    This is a tricky situation since you're raising t3 while eliminating levo. I think the other members have covered it pretty well. I just want to add that t3 can have short term effects while it rushes the blood stream. Some people experience heart palpitations or flutters after dosing while the full amount of t3 enters the blood stream. However this is different from being overmedicated where there is too much t3 on a cellular level at all times. I don't claim to be a professional in any way, but from my understanding in such a case heart symptoms or side-effects wouldn't coincide with dosing times.

    I know this must be entirely frustrating for you, but this is just a stepping stone towards understanding your body and symptoms. You will have this resolved soon, and since you had a good balance at one point you'll be able to find it again.

    Edit: I forgot to add, flutters as you say can be a sign of undermedication. When one is overmedicated on t3 you would expect a constant high racing heart rate. I don't want to assume if you're over or under medicated without some test results, but wanted to throw that out there. It's what my Endo explained to me when I had palps/flutters when starting t3.

  • yep i totally understand, you're completely right. it's highly frustrating and I'm more annoyed at myself for stopping the T4 just like that thinking it wouldn't have a knock on effect?! totally naive...

    i've never suffered with fast pulse after dosing except when trying NDT which i took myself to A&E i felt that bad and they put me on a saline drip to flush the meds out and slow my pulse. never again will i try NDT - each to their own but my experience was horrendous. my fast pulse in recent months have been because of my high cortisol levels at night which i am addressing and have been so much better - getting a deep full nights sleep without having the pain of going through an hour or two of over heating, nausea, fast throbbing pulse and surges throughout my body.

    i generally feel under active, not over in this last week - i know i haven't done tests but the tests wouldn't be accurate anyway as i'd need to wait 6 weeks before the change is noted in my levels as i keep reading. so i go by how i feel, my specialist is an advocate of that too but will still do regular testing, especially as I'm taking LDN now.

    I'm still slightly confused as to how to proceed now though as i have added T4 back in today at 50mcg with 31.25mcg of T3 so far but i usually split my T3 in 4 doses throughout the day. i know it takes 7 days for the T4 to take effect so I'm inclined to carry on with my normal T3 dose and in a weeks time be extra vigilant of my symptoms of over medicating which i can start dropping my T3 dose gradually. OR drop my dose right down to 50mcg during the next week or so until the T4 is back in my bloodstream and then go from there, gradually increasing my T3 back up to where i was.

  • Don't beat yourself up over it. With all the opposing advice and little help from doctors we're prone to make mistakes as we try to navigate this minefield. You're not naive at all, you're actually being vigilant in trying to address your problems and taking control over your health. This is just a hiccup along the way, we all have those :)

    It seems to me that you're doing the right thing. And you're also quite aware of your symptoms and side-effects from past experiences, so trust yourself as anyone else on here can only really speculate.

    Unfortunately you have to experiment a little. Why do you split your t3 at 4 times throughout the day? I would personally try lowering the T3 dose while adding the t4 and not waiting a week. In the meantime you can monitor your symptoms and if you feel more under medicated you can add some t3 back in. T3 only stays in the blood for 8 or so hours, and in the cells for a couple days. This is just my personal opinion, I'm not a doctor. You need to trust yourself in the end. I'm just thinking I'd rather be under medicated for a couple days than over medicated. And by doing this little "experiment" it might help you gauge where you are with your dosage needs.

  • yeh you're right, it's a learning curve and no one gets it right first time. if they do they're bloody lucky :D

    I followed stop the thyroid madness a lot when i was first diagnosed which is why i tried NDT quite early on. this is the advice on the T3 dosing stopthethyroidmadness.com/d...

    so i currently take 31.25mcg when i wake up, 25mcg at midday, 18.75mcg at 4pm then 6.25 at 8pm. my specialist was ok with this but he prefers all at once in the morning which can push the T3 through the cells which is useful for people who are resistant but he didnt make it a must do for me. I'm worried about feeling massively over medicated and just like i did when i was on NDT. i am thinking of just splitting it into 2 now - am & midday. it's worked for me so far, i don't really know any different though as I've never taken it all in the morn.

    you're right about under being better than over - i will stick to 56.25mcg of T3 for the next week whilst taking the T4 again and monitor my symptoms. if i feel ok after a week i'll gradually increase again by 6.25mcg every 2 weeks. on the plus side my chronic lower back pain has subsided today! woohoo! whether thats because the worst of the shock of T4 leaving my body is over, lowered my T3 (meaning most peoples comments on here of my dose being far too high actually being correct) or the daily gentle yoga has worked wonders. either way, I'm happier and got a better sleep so will just take this as a valuable lesson to never ever stop meds suddenly! thanks for your advice, makes complete sense to me and made me feel more sure of my decision so thank you x

  • I'm happy to hear you're already doing better :) I used to split my T3 also because I was a little sensitive to it at first. After I adjusted I eventually bit the bullet and tried it all in the morning. It ended up working really well for me and I actually feel more "even" throughout the day. I'm not saying to make the change now, since you're already making so many adjustments. But eventually (once you find your dose) its worth a shot trying dosing all at once.

    All the best with it!

  • thats amazing dang! how much do you take in the morning now then? once I've allowed my body to adjust to T4 again i'll give it a try. i've stuck to 50mcg T4 & 56.25mcg of T3 since sunday and I've felt great - even went swimming in the sea today :D maybe i needed to reduce my T3 dose after all? hmm so hard to figure it out!

  • Yea it's definitely a tricky task but it sounds like you're managing it. I'm happy to hear you're getting there :)

    I now take a combination tablet which contains 100 mcg t4 and 10 mcg t3 all at once in the morning, it's super easy because it's just one tablet. I used to take levo in the morning and split t3 twice a day, so this has freed up my time and I don't have to be so strict with my eating schedule anymore.

  • Hmm that's interesting, another person on this posts recommends splitting t3 doses to the circadian rhythm which made sense to me plus it has a shorter life span so it would surely keep you level throughout the day?

    I've never worried about eating around t3 as I researched it and it's not like T4 which you shouldn't eat 30-60 mins before or after. I dissolve the t3 under my tongue too for faster absorption. But I get the schedule thing, I have so many alarms throughout the day and always get embarrassed when I forget to turn it off in the cinema or at work 😬 I guess you're taking such a low dose of t3 that it doesn't really matter but I feel splitting my 56.25 dose into 2 is manageable at the mo. As (if) i increase I'll consider taking a bigger dose in the morning maybe and gradually increase until I take all of it in the am with the T4. I guess I won't know if it works for me until I try eh. We're like human guinea pigs!

  • So a lot of people who based their theories around the circadian rhythm thing are only considering how long t3 remains in the blood. T3 has a short lifespan in the blood, some say around 8 hours. BUT, and his is a big but, t3 in the blood doesn't do anything, it's just sitting there waiting to be used by cells in the body. On a cellular level is where t3 actually does it's trick, and t3 stays in the cells for a couple days. So the opposing theory is that taking your t3 all at once floods the cells making it easier for your body to use it.

    These are theories mind you, nobody really knows anything because we don't actually have tests for these hormones on a cellular level, but one thing is for sure it's the cellular level that matters.

    In the end it's best to experiment. I posted a question about this when I first wanted to start dosing all at once, and I asked for solid proof, papers, studies. None of those existed, but I got members telling me their experiences. Some split, some take it in the morning, some at night. The thing is each of those people tried all the alternatives and just stayed with what worked best for them.

    My dose is definitely much smaller than yours, but I was told to split it at first by my Endo because even at 5mcg my body was having a hard time adjusting, so he said this will make it easier, which it did. But once I adjusted I found it easy to dose at once. He also mentioned to me that he has patients who take 60mcg t3 only (no levo) and they dose it all at once in the morning without their heart skipping a beat (he told me this right before he called me a sensitive patient πŸ˜‚). He says he prefers patients to dose all at once.

  • My Drs wants to seem every 6 weeks

  • Only when to much med

  • Heart issues means to much med on me

  • If you're on an MTD you should need anything else cause I give you both T4 and he three

  • I can only tell you about my own experiences in this area.

    Since being diagnosed with primary hypothyroidism 17 years ago (autoimmune hypo-T or Hashimoto's disease), I have read that you should take T4 only, mostly T4 and a little T3 (to mimic what your own thyroid gland would be giving you if it was healthy), NDT (which contains T4 and T3 but in different ratios than the human thyroid gland would produce) and, finally, T3 only.

    If there is one thing I've learned over the years, it's that we are all different. That may sound both obvious and ridiculous, but honestly...how many diseases are there where you have so many patients doing well on so many various treatment options...? I mean, how many people suffering from hypertension, epilepsy, diabetes, or RA, just to name a few, can try so many treatment options as we do before settling on one...?

    I will probably never understand this fully, but I know, after reading literally thousands of posts over the past 15 or so years: some hypothyroid people will do perfectly fine on T4 alone. It's important not to forget those people because they do exist. I never did fine on T4 alone, but I know people who do.

    However, even though I never did well on T4 only, I have never been able to wean off T4 drugs completely. I know people who have stopped taking T4 altogether, taken T3 only and done great.

    To sum up, I never felt optimal on T4 only, but I never did well on T3 only either. Since realising this, I have tried to find the optimal T3:T4 ratio for me...I'm still not there, I'm afraid. I'm beginning to realise this may be due to estrogen dominance caused by estrogen supplements well before menopause, and this in turn will affect the body's ability to effectively use thyroid hormone.

    I think you should not obsess too much about what you should take and how much; rather accept that you seem to need some T4 as well, and take it from there. What I mean is: try to figure out the ideal T3:T4 ratio for YOU.

    When you visit a lot of forums and blogs, it's easy to get the impression that T4 is a useless hormone only meant to be converted to T3, so you might as well take T3 directly and forget about T4.

    That sounds easy, but if that is how things worked, the human thyroid gland would only need to produce T3, and no T4...if it does in fact produce 80-98% T4 (that figure will vary depending on your source, but you get the picture), that is because, in a healthy body, T4 does have a role to play. Of that, I'm sure. And, like I said, although T4 alone never worked for me (I continued to put on weight, feel tired, look puffy, have heavy periods, adrenal fatigue, just to mention a few side effects of thyroxine only treatment), T3 alone never worked for me either...it's obvious to me I need both T3 and T4, and I am currently trying to figure how much of each.

    That may very well be true for you as well, so don't give up; it can take a lot of time and patience figuring it out, but please don't dismiss T4 as completely useless and dispensable.

  • Yes, I would agree. I was fine for nearly 15 yrs on T3 only until recently where it seems I stopped producing my own T4 so have add to add it back in.

  • i think you're right - i hated it at first, then it made me feel better, then it made me ill, but now i found the right combo with it but stupidly stopped it thinking it wasn't contributing that much. I'm going to reintroduce it slowly and get back up to 50 mcg with the same T3 dose i was on when i felt well and pray that my body doesn't reject it :)

  • healthunlocked.com/thyroidu... this is exactly my issue - a thread where there are several people dosing 100mcg+ of T3 only with now issues...

  • Yes but they mostly all mention it being slowly and using blood tests to know if levels are climbing too high or how they feel etc which you haven't done so you don't know if you are one of those with an issue or need a more a standard sized dose. It is often clear in your tests whether you are one of those with absorption issues for example, as your blood tests will still show you are undermedicated. If you have resistance, it is a little more complicated and might be more based on how you feel, but it would still be important to leave long enough in between changes to feel full effect of your dose before increasing again and stopping or dropping back down once any side effects become clear. You will still be just starting to feel the effects of the increased dose changes you made weeks ago and you have no bloods to go by. You are kind of going blind and very quickly and this is not advisable in my opinion. But as mentioned by others, you need to make a decision :-)

  • Please be careful removing T4. I had always felt poisoned on Levo so went T3 only. I ended up with a TSH of 60 and hospitalised. I was sweating, my joints began to crumble and just leaning on my elbow caused my shoulder joint to swell to an ungodly size, then freeze. I've had to have shoulder surgery and it's never going to be the same. 😒 I lost 95% of movement in it.

    I am one of those people who cannot go T3 only. I am still paying the price 2 years on and I only stopped the T4 for 4 weeks.

    As the wise ones say on here, we are all different - but listen to your body. It will tell you.

  • oh wow that sounds terrible, I'm so sorry for your bad experience - i hope you get back to normal eventually with help. i have officially been warned - I've found some T4 in my room so started taking it again

  • I never said I increased by 25mcg a week- I've increased 6.25 (quarter of a tab) every 2 weeks as per the advice from my specialist as was feeling fine with it.

    So my symptoms were more fast pulse which were throbbing throughout my body and waves over rushes & overheating - insufficient adrenal type issues really. Or that could be deemed as over medicated of course but I am much more familiar with adrenal problems as have had them for years on/off even before I was taking t3. I'd had a very spicy meal the night of my worse sleep which I believe doesn't agree with me now (autoimmune paleo diet doesn't allow capsicum anyway)

    So I've not had heart palps as such, the odd flutter recently but that feels like under active as I used to get them bad before I started any medication- this all makes me feel in my gut that I am under medicated again because of the sudden drop in T4 along with dropping my t3 dose because I've been scared by people's posts on here about my dose being far too high. I don't believe that's the case now as I've had no problems nor symptoms whilst slowly raising & my specialist didn't express any concerns either so I'm inclined to go against most views on this threat now. My choice I know but I full appreciate everyone's story and side of things

  • Hey PurpleJuicy,

    Its hard to say without any labs/nutritional data whether this amount T3 is truly too high for you. Usually people who need high doses of T3 have some T3 resistance or absorption problems. Resistance occurs at the cellular level where your cells are unable to uptake T3 efficiently despite high concentrations of T3 in blood and this is primarily due to a high inflammatory state (if you have some time do some searches on this topic). There are several causes of inflammation in the body (blood markers include CRP, LDL-C, liver enzymes amongst others). Main contributors include nutrient deficiency (vitamins/minerals), food intolerances/sensitivities (gluten, grains, soy, dairy, meat, citric fruits etc). A good place to start is to increase the consumption of dark green leafy vegetables and to decrease processed foods especially animal products.

    You don't need to decrease your T3 while you experiment with dietary changes. Overtime the inflammation will decrease you will most likely find that the current dose you're on is too high. Give it 2-3 months (remember unlike pharmaceutical drugs nutrition takes time to work!).

    If one is not able to find the source of the problem, it is very likely that over time you will need higher doses of T3. T3 increases the rate of metabolism which consequently increases the rate at which inflammatory molecules are produced in the body further reducing the effectiveness of T3!

  • thanks for the advice - i am a qualified nutritional therapist so I'm fully on board with dietary changes. I'm trying to stick to a autoimmune paleo diet for 3 months but i find it unbelievably hard being such a foodie enjoying such a variety of foods. i did unwillingly poison myself with wheat last weekend after being 3 months completely gluten free so i won't if that played a part?? anyway i stick to no gluten, soy, corn and trying to remove dairy completely but i like the odd bit of goats cheese. the diet is high in fish & meat though so i cannot remove meats otherwise i'd have no protein what so ever. i buy organic meat anyway.

    i think I'm going to feel a change over the next few month from LDN more than anything else - most have to track their levels and reduce their dose after taking LDN for a while as it reduces their antibodies (i am hashi's)

    many others take high doses of T3, some in the 200mcg mark, i guess that's the absorption and resistant issue you talk about. maybe i do have that - i am dosing on how i feel - something i feel is more accurate than going by levels. i will check my levels every couple of months of course but they're not my ultimate guide.

  • The fact that you already know the importance of nutrition should make make things that much smoother for you! My background is in neuropharmacology and over the years I have made a transition into molecular nutrition after realising just how powerful it is - in most cases much more powerful than pharmaceutical drugs (but unlike pharmaceuticals nutrition takes time and patients).

    The presence of hashi's would further support the case for inflammation. I don't think your T3 dose is extremely high, it's likely that you have some T3 resistance. Dark green veg contain very powerful anti-inflammatory compounds so increasing this in your daily consumption should already help things move forward, its just about being consistent and not giving up.

    I do agree with you that its definitely not all about levels, these are just a guide to make sure nothing seriously whack is going on! So it would make sense to continue dosing as you are now while slowly enforcing an anti-inflammatory diet. At some point it in time it might be worth to invest in checking for any nutritional deficiency (just in case). Part of the reason is that thyroid hormones are indirectly responsible for the absorption of many fat soluble vitamins (Vit D, K1, K2, E, A etc) and some minerals (Fe, B12 etc) and amongst many other functions these will ultimately help in reducing the inflammatory cascade.

    I hope this helps!

  • Hey - sorry I forgot to cover the T4 issue you're having. You want to try and keep your T4 levels mid-range and T3 high. In your case it might be that mid-range T4 levels are achieved with the addition of 50mcg T4. If that is the case it might be best to start taking it again to feel optimum!

  • Hi i think if you feel worse coming off levo then you should go back on it, but before you self medicate you need your levels checked and then try adjusting accordingly, iv been on levo 50mg for 7 years and started vit d 40000 iu once a week 7 weeks ago for deficiancy, but even a week before i started the vit d i had my 1st palpertation feeling in 7 years, it starting getting worse lasting 5 hrs a day of palpertations, then i had my levels checked, only tsh checked by docs here in uk, tsh of 0.65 i think which they said was fine and i dont need anything changes but i went back 3 times complaining how i feel and docs did not listen to me, so i starting taking half a 50mg tablet for the next 5 days and that made me a little better id say 25% better, so i thought il just stop the levo, next day palpertation feeling gone, throughout these 7 weeks iv had 4 ecg at hospital and they all come back normal so now im convinced that although it feels like palpertations its NOT, for the past 3 weeks i noticed my left eye would spasm all day long without fail, went to docs with eye twitching, he said it happens when yr tired and fobbed me off as usual, even now with no levo for 5 days i had palp feelings 1-2 hrs a day, reasearched and found out causes of muscel spasm etc and up with dr deans magnesium miracle on youtube lecture for 1.5hrs, went and got magnesium citrate to try, just took 2x100mg tabs a day for a week and then 1x tablet a day, and 14 days later here i am today with no palpartation feeling it was muscel spasms all along fixed with magnesium, scared to try levo again, will see if and when i feel brave enough. Eyes feel a littke tired all day but am now researching on topping up all minerals and electrolytes on youtube with dr eric berg and hopefully live without levothyrixine, moral of the story is only YOU know yourself best, not the dr, make a few changes good luck

  • Reading all the wonderful comments of the thyroid patients on this great forum . Only reinforces for me that we are all individual and all our needs are different . Thyroid meds are not dosed by weight ,age , or gender . Rather by how our body processes the thyroid meds . And it's in our liver .There are times that the labs will show that we are optimally dosed and yet we don't feel well . That is because we feel well only when our cells are well dosed . In so far that there is no way testing our cells good Endi/Dr's will dose by what the patient reports and not by lab results . Every cell in our body needs from our heads to our toes need thyroid meds if our own thyroids don't make it for us for various reasons .

    T4 and T3 is very important for us . However some of us do very well on T4 only because some of us are good converters. And some on T3 only . And Some with a combination of both T4/T3 in various combinations . We can not dose ourselves by what works for others . We must respect our own bodies needs . And dose accordingly .

    Yes I will say that if one is on any T3 meds it's best to split doses throughout the day . It may be 2x or 3x or even 4x if your following circadian rhythm . You have to try and see which way works and feels right . Some of us may also split their T4 half before AM and the other half PM . It all boils down to "ART more than SCIENCE ".

    Journaling our symptoms with any new changes helps us achieve our optimal dosage . It also helps to be more aware of our symptoms . For example we look for dry skin , aches and pain , energy, mood changes , weight , puffy eyes , blood pressure , pulse , fatigue , insomnia etc.

    Diet plays a big factor too . Wheat and dairy intolerances . Omitting it from our diet is very helpful . Adding nutrients like Vit"D" , B-12, Selenium , Iron (please run labs first with Iron panel and ferritin) to see if Iron needs to be added .Vit"C" , Magnesium etc.

    Iron and adrenals (Cortisol) are crucial for our thyroid meds to work well .

    Paying attention to our "ADRENALS" is extremely IMPORTANT . Thyroids and adrenals work in unison . If we are not well dosed with thyroid meds our adrenals pick up the slack . It can cause adrenal fatigue over a period of time and cause our thyroid meds not to work the way it's meant to work . Even if we are well dosed with thyroid meds sometimes we will need to support our adrenals too to feel optimal . Sometimes when we don't feel well we think we need to increase thyroid meds when infect it might be that we need to support our adrenals too .

    Finally when it's time to run labs the best even with T4 is NOT take the AM dose only after running labs first and then take thyroid meds right after labs . This way we measure the trough (lowest point) of our thyroid levels .

    Best wishes to all to feel the most optimal .

  • These problems begin with viral things I clean me out with oil of oregano cause it kills viral things plus kills Candida as well talk with the lady who's book on the Root cause it's all from Epstein Barr virus

  • it's not always from EPV virus. there are many individual cases, depending on the person

  • That's exactly what my specialist said too, it makes sense. I was told last year by several people on the STTM forum that t3 only lasted 4 hours in the blood which is why it made sense to split at the time but when you talk about flooding the cells, that makes more sense. Tricky like you say with no evidence or research. I wonder if it's best to gradually increase the am dose or just take all of it in one go one morning to see? Gradually is probably safer obviously

  • I can't take it all in one go as causes me issues so can only take 10-20mcg max at a time but may not in some others. I used to be able to take more when I had inflammation, resistance and other issues but now can't really stand much more than 10mcg at a time. Where I split, the levels in my blood start dropping after about approx four hours where I'm topping it up continuously, I still have some though, just not enough for optimal level. I think this is what they meant by four hours. If you can take all at once, you would obviously keep it up longer as has a longer half life than four hours. I can't do this as I suppose you're creating a higher level to begin with whereas my body only likes a level not too high at any time and always at a constant level :-)

  • Check your temperatures. ...36.5-37.0 is normal....any lower you are hypo. ..any higher you are hyper. ..take it 3times a day .. the first being on waking even before you get out of bed ...this should indicate what is going on (nb...a high temperature can mean infection )

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