For years I’ve been on Levo only and getting worse. My best lab results were in Nov. I was on 88 Levo four times a week and 75 for the rest. Posting all further down.
Since then, I was on 88 T4 alternating with 94 T4 three times a week. FT3 & FT4, always too low but felt bad when I tried to up the Levo.
So five weeks ago, I switched to 62.50 T4 and + 12.50 T3 at two different times. At the start I had more energy on some days, though it felt more like being wired up than real energy. Then the tiredness took over again but I was even more incapable of relaxing, let alone sleep when tired (and we had a heatwave for a few days, 106 degrees F.!) and all symptoms slowly worsened.
You just look very under medicated to me. TSH is over range, indicating a need for more meds. Both fT3 and fT4 look below 50% through range. You need to up something, as per your preference. If you increase T3 you can test after about 3-4 weeks, if you increase T4 first, then it would be 6 weeks. Technically it would mean this test was taken about a week too soon, as you changed T4 and T3 together. The numbers suggest you would be feeling awful
Hi Lokita, Thanks. Especially for understanding how awful I feel (Lol… ) I feel I’m always explaining to people why I can’t do this or the other…
Before I forget (ahem), I want to say that whenever I haven’t taken my morning Levo dose, because of a blood test, I get a rush of energy, i.e. almost feeling like I used to feel before (still with symptoms but able to function!) Yesterday was such a day and I decided not to take the levo at all. Of course the next day I always crash, like today… Do you know why, or have you ever experienced this?
It can’t be because I’m over medicated. So, should I just raise the Levo another 12 mcg.? Stay on same dose of T3 (12.50 twice a day)?
About the 6 weeks, I thought it was 5, but anyway, if it weren’t for the measly results I would be proud I stuck with it so long, since I tried adding T3 twice in the past and just couldn’t hack it longer than 4 days. Naturally, since results came in last night, I’m very disappointed – we keep hoping, don’t we?
My other big question is that I always feel any raise or lessening of T4 or T3 immediately and would like to try tweaking every 2 or 3 days, see if I'm better and stay on it, but on here I’m always reading that you should take one dose (of both or either) and stick with it for 5, or 6 or more weeks (8 and even 10 were suggested).
Well, I did that, and am more than reluctant to suffer so long again!!! It’s that delicate balance between deciding on doses by how we feel vs. trying to be patient and disciplined and reasonable. So that’ s where I’m at and I hope this makes some sense to you (brain too muddled for clear expression right now!)
I read yr. profile. Thanks, it helps. They say misery likes company, I say shared joy is double the joy and shared misery is half the misery
Hi - that's interesting about feeling better when you forget the levo! That hasn't happened to me. I feel much worse by the afternoon if I forget the levo in the morning.
You definitely don't look overmedicated: the TSH number is telling you that you are undermedicated, because it is higher than the reference range, so you are technically still hypo.
Yes, I would say it's a good idea to raise the levo by 12 mcg if you can't tolerate raising it by 25 in one go. I raise by 25 as I seem to get away with it!
This having been said... you mentioned that you struggle with levo and it has me thinking. There are some people who really don't agree with levo - it is unusual, I think - and I guess it is possible that you could be one of them? You could start a new post and ask about this as it's beyond my knowledge so I couldn't talk about what it looks like or give you a sense of whether that is you, unfortunately, but others may be able to do so! With this in mind, maybe raise T3 first instead?
Yes, it's 6 weeks for fT4 to stabilise and give you a sensible reading on a test result and 8 weeks for TSH to stabilise, but not much at all for fT3. My endo advises about 3-4 weeks, so that is what I use.
I completely agree that I would like things to move faster too, as I feel like I know where I am really quickly - maybe two weeks? - after changing levo. But I play by the rules because it means you get a proper test result and know where you are and where you were if you keep a record. And I can share with the endo and he respects that it is science because I've done the tests in accordance with the science. But the pain of waiting out a dose change is truly awful and I totally understand... I've been in the limbo of dosage changes for 7 months now and it's a long time to feel rough! To be honest, some of my recent results haven't looked too different from yours, except I'm not technically under-medicated according to tSH and you are technically under medicated according to TSH!
Are you not getting help from a doctor or anything? It's hard on your own!
I love that phrase "shared joy is double the joy and shared misery is half the misery". I haven't heard it before, but I think I shall steal it and use it in the future!
-I’ve read that there’s a special “gene” or such that makes some people not agree with Levo. But I’m 99% sure that I couldn’t get this test done here. I’m living on a small Greek island. And there’s no way that I can make a trip to Athens with my low energy level. I don’t think I have a problem with Levo, as such, since it agreed with me for five years after I did RAI (see my profile) and I’ve since found out that RAI is very known to cause hypothyroidism a few years later.
Thanks for the info about tests and how long to wait for what. Yes, I am self medicating. I haven’t met one endo worth his or her salt and that’s putting it mildly. All other docs say, as well, Only TSH counts. That’s why this platform has been, and is a life saver to me.
I was thinking of raising my Levo, since that has been an issue for a long time, and maybe the T3 would help me process that. Then wait and see how I feel and if no improvement on symptoms at all, raise T3 by 6.50.
And if still no improvement at all on symptoms, no matter what the next labs say, I’d give NDT a try again.
Now I’m debating as two other friendly souls just made suggestions, just now.
As regards the phrase, I don’t think I heard it either, I probably made it up. You’re more than welcome to use it! No copyright included
I’m in the U.K. After 15 years of doctors being guided by TSH alone I was constantly told I was overmedicated, but every time I reduced T4 I had hypo symptoms.. I asked to see an endo as had not seen one since 1980s and recently saw an endocrinologist who is Greek and recommended T3 addition. T3 is not widely available here due to cost (ridiculous price hike to NHS) and doctors cannot prescribe but I hear is easier and cheaper to get in Greece. Is this true?
My daughter who’s on NDT had a genetic test a few years ago which showed she had a gene marker that meant she might not convert T4 to T3 which made me think I would likely have the same gene. Think it was 27andme or something like that that did the test.
So, your T3 hasn't moved much despite introducing a split daily dose of 12.50 :
Your T4 has dropped a little, but so has your intake from around 90 down to 62 :
and your TSH the least important of all these results is shouting out for more thyroid homone replacement : so I ask myself, are there absoption issues ?
I too felt somewhat turbo charged on synthetic T3 and if your vitamins and minerals are opimal I think, considering this latest experiment, switch to the NDT, since you already have some, and just see if it helps you at all.
Build up low and slow :
Monitor blood pressure and temperature twice daily :
Stop the synthetic one day and start the NDT the next :
Some people take the NDT once a day, others split the dose am and pm :
Week 1 start on 1/2 grain daily ;
Week 2 increase by a quarter grain to 3/4 of a grain daily :
Week 3 move up to 1 grain a day :
If you reach 2 grains, hold that dose for 6-8 weeks letting it bed in and then take a blood test to see where your T3 and T4 now sit - if your T3 hasn't moved much NDT may not be the best option for you.
If it has moved and you feel ok, but still with some symptoms build up from 2 grains and follow the same low and slow principle until symptoms are relieved.
There comes a week where you don't feel as well as the previous week, simply drop back down to the previous weeks dose, and stay on that dose for 6-8 weeks, and then take a blood test for your reference, as that is likely your best dose on NDT at that point in time.
I have read that after RAI induced hypothyroidism NDT is better tolerated over synthetics.
I didn't give myself long enough on a synthetic combo to either find the right dose or T3 of choice, so can't really say anything else, expect you have some NDT, so give it a go, you've nothing to loose as currently you aren't doing well on the synthetic T3/T4 combo.
So sorry this new trial hasn't worked for you ;
I thnk I've mentioned before but I do also take adrenal glandular and started these around a year before I switched to self medicating with synthetic T3/T4 and then NDT. I still do need to supplement ferritin, folate, B12 and vitamin D and see these as part of a life long consideration in order to find optimal conversion of the thyroid hormone replacement.
What was holding me back from NDT was the idea that it was the last hopeful resort and if it didn’t work out, I’d be back to synthetics and that Tweak the Combo gig (sounds like a cool song title or band name!). I slept on it and it got turned around, as I realized I still could revert to synthetics if NDT didn’t work, and thanks to your great “instruction manual” – many thanks!—I didn’t have to keep pondering doses. So here I am on the NDT train.
Day 2: so far so good, rather better than before. It’s early days yet.
I’ll keep you posted if you’re interested. Again, many thanks for your help and your “push”
Thanks much for nice encouraging message. I especially needed that today, Day 3, because as usual after any change I introduce, I crashed. My habit of tweaking is taking over and wondering if I should add 6 mcg T4 tomorrow, or do I just stick with it the 1/4?
I do have a few more questions that I was reluctant to ask you, since you’ve been so helpful and I really would like to let you “off the hook”. But I’ll ask them and then I’ll stop.
About temp and BP: My temp is better, it’s usually too low.
My BP is just as erratic, normal in the morning, with a big increase around noon and down again in the evening, though the big increase has been slightly higher. But what to do with this info? I don’t want to stop this new trial. I also don’t know anymore how to treat the BP. Four y. ago a respected cardiologist (doesn’t mean much, does it) told me to just “pop a pill” only when it was too high. Since then, two generalists have told me to monitor for a week, 3 times daily, Come back to them and then I might have to take meds for it daily, not sporadically. Since I’ve been afraid that the BP meds could interfere with thyroid ones, I’ve stuck with the 1st advice.
- re adrenals: I did a test about 10 months ago. It was good. Then I was told here about the 24-hour saliva test being much more accurate. They don’t do it here. So, I dropped it for now. Why do you take adrenal glandular?
- I checked my Vit D. with last test. It’s okay but not optimal. Hope that’s not been interfering.
- last but not least: my pill cutter’s delicate to handle and the quarter I took today was bigger. Could that play a role or am I being finicky?
So, my blood pressure remained stable thoughout my trial and my temperature rose from 35.4 to 36.6 where it is most days now.
I don't know about erratic BP but the link between the thyroid and adrenals is well documented, as they pick up the slack when the thyroid can't work properly.
RAI is also taken up by the adrenals so I decided to try some glandular as my back was extrememely achey thoroughout my unwellness.
Within around a month my backache eased so put 2 and 2 together and have continued with this supplement as I do feel better for taking it.
I had no saliva for around 18 months due, I believe, to the RAI treatment, so struck out there on the science of the testing and just went with my gut, on this one.
I'm glad your adrenal test came back as ok.
I had a short synacthen test that I was told was ok but then read in Dr P's book. Your Thyroid and How To Keep it Healthy that this test is not sensitive enough and really only a test for full blown Addisons ???
My pill cutter doesn't sound much better than yours, but over the course of a few days I don't think, a slightly less or more proportion of a grain is going to make much difference.
I now know I feel at my best when my ferritin is up at around 100, my folate around 20, B12 at around 75++ and vitamin D at around 100 and I supplement these on a regular basis, and now part of my daily/weekly regime.
I think I've answered all you have asked, but please come back if there's something I've missed or something else not sitting right for you.
As regards my adrenal test I don’t know if the test was adequate. There seem to be many different kinds. I also don’t know if I should take glandular, as in “it can’t hurt” since maybe it could… I can’t find answers on web, maybe you or someone on this platform knows. I remember I had to take a pill called Dekatron the night before test.
Right now my most pressing problem is that, at Day 5 of NDT, I don’t know if I can keep on going. Feeling worse than ever, as if there’s too much of something or just something that my body can’t take. Plus a whole new symptom, as of this morning, a pain in my heel, so now I’m limping! 😕
I'm sorry, I don't know anything else than that already relayed to you.
My transition from synthetic thyroid hormone replacement to NDT was relatively easy and uncomplicated, though I had spent over a year building up my core strength vitamins, minerals and adrenals in preparation for this switch from monotherapy with T4- Levothyroxine.
It’s good to know that yr. transition to NDT went so smoothly.
Obviously, we all react differently to different treatments. Some work for most or only for a few, or the other way around with another treatment (if that makes sense, I can’t ponder too well right now, lol). My lesson from these trials is that I got to keep on searching cautiously, until I manage to feel good for longer than two days, at least!
Sticking to one and not feeling good for weeks on end, hoping labs will show “improvement” -- which are also not “one size fits all” (and some find their sweet spot with totally unorthodox labs by any standard) -- that, I ’ve been doing for years now, whatever dosage / brand I was on and it hasn’t proven effective. So I’ll stop hoping, waiting for the lab results, like the proverbial donkey with the carrot.
You and many others have given me many elements & teachings so I have an idea of what I’m doing. Now I’ll listen first & foremost to how I feel. And also stop the Maybes , as in – “shouldn’t’ve switched during a heat wave” / “maybe the Thai S batch wasn’t good” etc.
So I’ve reverted to T4/T3, and finally felt better today, half way like a human being instead of the living dead, and I was finally able to go out, albeit 103 degrees out there. I’ll proceed with care. Thanks again for yr. support. Have a good evening!
I think I need to add to what I've already said that, NDT works best for me.
I'm not saying I'm 100 % , nor found my " sweet spot " or solved all my health issues.
My health is not totally resolved, and currently I do not feel " as good " as other times over these past few years on NDT but it's simply the better option for me.
The British summer finds me indoors with my blackout blinds fully down, hiding from the " lovely weather " - as I can't deal with heat and am very sun senstive so I certainly couldn't be there as I would be feeling even more uncomfortable.
I’ve been meaning to answer you, be it just to commiserate about you having to stay indoors re heat & sunlight. My eyes have been itchy + blurry vision, then got much better; today back again but luckily the heat is back to normal with a lot of wind since yesterday – relief! Those days of extreme heat + Sahara dust + high humidity were terrible – even the healthy and young were complaining bitterly! But I fight to make it outdoors once a day and recently only made it in the evening.
I’ve been very slowly raising my Levo. From 50 to 62, then 69; 75 once then back to 69; 75 again and today I took a plunge with 88. I take ¼ T4. Tried it in the morning, around noon and in the evening; tried ¼ twice a day. I know some say not to change too much, but I know that I immediately notice improvements. Except they don’t last… basically, I’m not in that wired up hyper state anymore but very tired and lots of joint pains. Higher levo seems to make it better. I might order some Tumeric since the spoonfulls I take of the powder I have at home don’t seem to do much. There’s also MSM by Solgar that I’ve taken in the past. Still, I believe that when I find a better dose, they’ll disappear.
When I say I go outdoors, I don’t mean going to town to shop for food, no can do. I can make it to the pharmacy + one other store, quickly, and then I go swimming. Some days I can’t go anywhere. When I make it to the water, no pains, no tiredness, no anxiety, contentment. But how long can one stay in the water?
Maybe it’s a “Mermaid Complex” – like those tales where they have to live on land for a while and are given feet but they feel daggers piercing their soles at every step!
Sorry, I think I went off subject here. But one has to find ways of amusing oneself, right? Hope you’re having a pleasant Sunday.
Well our " UK heatwave " is meant to have eased - there is now a breeze and I've just mowed my lawns so that's my outside exercise today ; looking for some rain as my plants look a bit like me - drooping - but at least I can take a shower and put clean clothes on.
I don't quite understand - is this 1/4 you mention NDT ?
If you sense improvement but it doesn't last - is it worth multi dosing ?
I'm not aware of any " surge or drop ' when taking NDT :
However I do dip in the PM but then I'm 74 and my nighttime activity sofa bound :
I do fall asleep very guickly at anytime past 10 pm and sleep well - taking 1 + 1/2 grains at around 3,00 am and wake up again around 6 am.
On a T3/T4 combo at around the same time of dose 6.25 T3 + 100 T4 I'd wake up feeling relaxed, happy and positive but as the morning went past I felt a bit turbo charged and then " it " fell away mid afternoon :
In hindsight maybe I should have tried an additional 6.25 in the pm around 12 hours after my morning dose :
I have tried a 1/4 grain addition of NDT in the PM and that found me glued like a magnet to my fridge in the evening looking for anything and everything to eat and not feeling tired - so " hello " I recognised these symptoms from being hyper, so stopped myself in my tracks.
If I take the additional 1/4 grain NDT in the night I wake up a bit agitated - so quess, this is as good as it gets for me.
I was actually wondering if the tiniest amout of T3 in the afternoon might be the answer but since I'm not likely to dance the fandango or go " clubbing " anytime soon have put this experimemt on the back burner.
We are all a work in progress as conversion of T4 into T3 isn't constant and " life events " can screw this up, as can suffering other pain, drug and and health issues andwe also need to keep our core strength vitamins and minerals optimal.
So there' a lot of balls to keep juggling and not dropping, which is why I now tend to think in some ways, the more challenged our body is , the better it maybe served by small regular doses of T3 as it's a guarenteed dose and possibly easier to manage.
I don't know the answer but just thinking out loud.
I'm staying on NDT however, as at this point in time - I think my ball skills and juggling working, but if around when 84, maybe I'll need to reconsider my juggling act !!!!
Mowing lawns sounds like quite an exercise, congratulations!
The 1/4 I mentioned is T3. Let me do a quick recap for you: after taking 88 alternating with 93 levo for months and often told here that I should up levo to 100, but every time I tried I was laid out flat as a pancake all day, I decided to try T3/T4 combo and you kindly gave me advice. So for five weeks I was on 62.50 Levo and ¼ T3 twice a day. As usual, at the start, more energy and then more of the same. (And labs showed no noticeable improvement). So then with your encouragement I tried NDT. But after 3 days I was feeling really bad and stopped after 5 days. So now I’m back on T4/T3 and have been raising levo slowly.
After writing you today I managed to go for a nice long swim, and after eating, best of all I actually managed to sleep – for two whole hours! This hasn’t happened in ages and it felt great (plus I had a very nice dream and am still in a good mood). Because I don’t mind at all not having the energy I used to, as long as I can sleep when I’m tired and feel a reasonable amount of strength when I’m awake. Instead of this constant limbo of restless, more-or-less exhaustion. I took another ¼ T3 this evening so as to be able to write you and do a boring paper work task that I’ve been putting off for three weeks for lack of energy.
So I’m not multi-dosing, but experimenting with increasing levo bit by bit and trying out slightly different times for T3. “Juggling”, as you put it. Also, I’m glad you told me that “conversion of T4 into T3 isn't constant”. I somehow feel I’m on the right path to The Sweet Spot, which still appears like a mythical mirage at this point, lol. But yes, what you say makes perfect sense and so I’ll keep on juggling!
Still have two questions, as your advice is always welcome: Have you had the joint pains symptom and if yes, what did you do about it? What about taking selenium? A while ago, I was told that I’m a good converter and don’t need it. At this point I don’t know if I’m a good converter or not.
Whether you are a good converter or not you have the means to adjust your dose accordingly.
All you can do is try and keep your core strength strong and solid, to support you as best it can.
Conversion can be compromised by low vitamins and minerals, any physiological stress ( emotional or physical ) dieting, depression, chronic pain, other medications and ageing.
I think as we age, and slow down, we will most likely be more reliant on T3 than T4 for our wellness - but I could be wrong- who knows :
So this 1/4 you are taking is T3 - so I'm guessing UniPharma so this takes your dose today to 62.50 T4 + 18.75 T3 ( 3 x 6.25 mcg ) - so see how you go and I hope you get a good nights sleep.
I understand selenium is mentioned in regards to thyroid eye disease and conversion, though I've never taken it.
I did live with what I would descibe as continual flu like synptoms, body hurting, limbs heavy and a body aching horribly, all day, every day.
Now I can ache after too much exertion and my exercise of choice is walking but I do tire quite easily, and I now haven't as much stamina nor resilence as I once had.
I just think as we have lost our own thyroids we have lost both T3 and T4 thyroid hormones and it's only fair that they are both physically replaced so we are back on an even keel :
It's presumed the thyroid shunts out about 100 mcg T4 and 10mcg T3 daily, with the average person needing to convert / find / utilise around 50 T3 daily just to function.
So by not replacing both T3 and T4 we have in effect been down regulated by around 20% of our overall wellbeingto start off with.
I think ill heath is like a falling domino effect and overtime this running on empty and feeling and being under par pulls us down even further until such time as we stop the madness and take back some control for ourselves.
We start by reading up and learning on Thyroid Uk the charity behind this amazing forum, and then level up the playing field by taking both T3 and T4 to reinstate hormonal balance though totally understand finding the right balance of these two vital hormones is the challenge but better in our hands as we know our bodies best.
I'm not sure my " sweet spot " is permanent, as I've been better and I've been worse than I am today - on the same level of medication, but overall it's a dam site better than anything I've felt in 12 odd years since RAI - so I'm reconciled, happy and much improved.
I hope you sleep well :
Just go low and slow, and with each dose adjustment give ut time to settle, change just one thing at a time and assess yourself as you go - there is't a quick fix, and your body has to realine itself.
Another thought - can you buy T3 at smaller than 25mcg tablets ?
From memory I was quartering a 25 UniPharma and doubt I could have got it any smaller - just think if you can get around a mesure of 3mcg it might allow you more precise adjustments ??
Personally, for me to have enough T4 for my body it usually puts my T4 at the top of range and over. I don't feel good when it's low. I get a high heart rate and feel restless like crawling in my skin. It gives me a headache and makes me look terrible. I start gaining fluid. At the same time I still don't get enough T3 but lowering my T4 and trying to add higher and higher amounts of T3 doesn't make me feel better. I've tried 88/94 because 88 is a little too low but I seem to be having more success with 88 on 5 days and 100 on 2 days but I must have at least a space of 2 days between the 100. I've tried 88/75 but that was too low for me. I also take 10mcg of T3 but I take it at least 8 hours away from my Levo to avoid sweating and feeling awful. If these were my results I would increase back to 88/75 with the T3.
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