Mentally better on more levo, more energy on mo... - Thyroid UK

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Mentally better on more levo, more energy on more t3

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Hey everybody,

I am a bit confused and annoyed.

I have been trying different doses in the last 2.5 years (NDT, levo only, now combination), recently being on 125 mcg levo and 7.5 mcg t3 for over 5 weeks.

I feel more like myself when I'm on 125 levo or even on 137 plus a bit of t3, but my ft3 is below mid-range in all cases, so I gain weight (over a stone in 6 months with no change of diet, which remains healthy), retain a lot of water and I'm quite demotivated and depleted of energy. My ft4 hovers around at 68-75% at 125 mcg of levo.

My doc suggested lowering levo, like 112 or 100 gradually and keep adding t3. He thinks that sometimes levo needs to be much lower in order for the body to tolerate t3 increases.

I dropped levo to 112 about 2 weeks ago and increased t3 to 10 mcg. First 8 days were a rollercoaster, but survived it and felt unbelievably hypo. Then silly me, added another 2.5 t3, so in total 12.5 mcg t3 and 3 days later I have palpitations, anxiety, the usual.

I know I need to go slow, but this is turtle slow, isn't it?

I am due my vits check up, but recently my vit D was over-range (over 126), vit B12 over mid-range (supplementing), ferritin below mid-range (it is SO difficult to raise it, been doing it for months and months), folic acid very decent, iron over mid-range.

I feel more like myself on higher t4, but I am unable to add t3 to it (tried 2 times now to add 10 mcg of t3 to t4 and I ended up with horrible anxiety and palps for weeks). ft3 hovers around 35-45% max.

Any suggestions? Advice? Please

Thank you,

Cuppa

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31 Replies

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adin5 years ago

I feel in the same way.I tried ndt, levo, now tirosint and t3. If I lowered levo I felt hipo, spaced out, whether if I add t3.

• in reply toadin5 years ago

Yeah that balance is so difficult to get. I think that I need to give doses 4 weeks to be sure, when I lower Levo I fluctuate so much until it settles more at around 3 weeks mark. I'm on week 2, time will tell. But I have noticed I lost 5 pounds of water weight in the last few days on higher t3. This annoys me so much that I don't know what my numbers should be or where I feel well I mean! If I add by more than 2.5 t3 I start getting so anxious it's terrible. I added 5, I need to go slow , like a hypothyroid turtle

adin• in reply to5 years ago

My initial dose was 125mcg. Now I take 112mcg Tirosint and 12,5T3 in the morning and 6,25T3 in the afternoon. If I increase the t3 dose, I gain weight and anxiety becomes worse. I think I'll drop the levo to 100mcg.

• in reply toadin5 years ago

do you have your blood results on 125 mcg and then on 112 and 12.5+6.25?

adin• in reply to5 years ago

On 125mcg my ft4 is high and ft3 is low(but above the min. range). On the combo, ft4 falls in the middle of the range and ft3 it's about 65%. If I change from one dose to another I immediately feel the change in a few days, it doesn't take weeks.

• in reply toadin5 years ago

And how are you on 125 and 12.5+6.25?

adin• in reply to5 years ago

More anxiety in the morning, but not spaced out in the evening. If I didn't have anxiety I would feel normal, I can't work that way. My doc offered me antidepressants.

• in reply toadin5 years ago

have you tried taking levo at night or checking what your ft3 level is 7-8 hurs after taking your morning dose? I am not sold on antidepressants, I was also offered them many times, but for me it's down to a dose I'm on. Most doctors prescribe them because they dont have any other resources to offer, which is sad

adin• in reply to5 years ago

I'm not sure,if I took the dose in the evening it would not keep me awake? And maybe I wouldn't have energy during the day. If I take 125 I could not take the second dose of t3. Why should I check t3 at those hours? How did you solve the anxiety?

• in reply toadin5 years ago

you can only try and see, everyone reacts differently, hard to say. Levels of ft4 are very consistent throughout the day and night, there is slight peak when you take them, but then again it's t3 that gives you boost. You just want to see if the morning dose is not too big, both doses are uneven, you take more in the morning, less later on and get tested in the morning. My anxiety was a result of a wrong NDT dose, but what helped also was yoga, meditation, breathing techniques, focusing on my needs and some talk-therapy. And more importantly - this takes time...

adin• in reply to5 years ago

When I was on ndt (3,5 grain -Thai Thiroyd) my ft4 it was below of the range and I had hipo symptoms. Now I'm back on the synthetic (for 2 weeks) and I struglle with anxiety. Maybe de T3 dose is to high but if I take less I have no energy. Strange but when I take the levo dose, after 2 hrs my vision becomes blurred, spaced out, sensitive to light, when I read, my letters are confused, tangled .

• in reply toadin5 years ago

oh right, two weeks is not enough, your symptoms will keep changing in the next few weeks. Yeah Levo peaks two hours after, for blurry vision, being spaced out, sensitive to light, anxiety is related to either increasing too fast or by too much or by being on a too high dose.

adin• in reply to5 years ago

Oh thank you, that's why I want to reduce the dose to 100mcg. I swapped directly from 3,5 grain to 112mcglevo+ T3.

• in reply toadin5 years ago

I would still wait these couple of weeks and do bloods. I also swapped from 3 grains initially to 150 Levo only, now I'm on 112 and 10, but I am pretty hypo

adin• in reply to5 years ago

And how do you resist having this hipo symptoms,don't you have anxiety ? Why did you quit ndt? I have anxiety on both the hypo and the hyper, I feel good until noon but then I get drowsy.

SilverAvocado5 years ago

Hi cupofcha, interesting situation. One thing I do wonder is if you could try changing your dose a little slower. You mention that you are going slow, but I consider waiting any less than 6 weeks to be pretty fast. I tend to wait 6 weeks, unless something confusing happens and then I give it a little longer.

For me symptoms are definitely developing for the full 6 weeks, and I find often the first 4 weeks are pretty turbulent, so some of the symptoms you describe like palpitations and even feeling more hypo might pass if you give things time to settle down.

Although its true that too much T4 while you're adding T3 can be disruptive, theoretically you shouldn't be getting such distinct experiences from both. Everyone is different so it may pan out that way, but it might also be partly because you're trying to move quite fast.

SilverAvocado• in reply toSilverAvocado5 years ago

I've just studied in more detail some of your recent dise adjustments. You've reduced by 13mcg of T4, and added in 10mcg of T3 at the same time. This is overall a decent sized dose increase, as T4 as 3x-5x as potent as T3, I tend to assume about 4x as potent in my calculations, so that 10mcg of T3 you added is the equivalent of about 40mcg of T4.

Your reduction in T4 is therefore just over a quarter the size of the added T3. This is fine if your intention is to move in the direction of an increase rather than keeping your dose stable i. e, you consider yourself undermedicated at the moment so want to raise. As this is a decent sized increase, I would definitely advise holding on this for 6 weeks before adjusting any further. Particularly if there is any extra complexity like that you might struggle on T3. If you get into difficulty in that time it's an option to drop back to 5mcg of T3, because 10 is a pretty big dose to start on and some people do struggle with T3.

Then you mention that you had a difficult 8 days and later felt very hypo. Both of these things are completely expected after a dose increase. I find almost any kind of feeling can happen early in a new increase. It's common to feel more hypo even though you've had a raise and expect to feel less hypo once it's settled.

At that point you start adjusting the dose again very quickly after you added the T3 in the first place. For me this is a recipe for disaster. I think if you're getting unexpected symptoms that's the worst time to add in some more complexity. I think it's best to just give things some more time, and allow things to settle down so you see your true long term symptoms on that dose and not just how the body reacts to the shock of the dose change. This is especially true on T3, as it's much stronger than T4 and a dose that seems small goes a very long way.

It's quite common for people to get the very overmedicated type reaction to T3 that you got after adding some extra. This might have happened because you moved so fast, or you might be one that struggles with T3 overall. 10mcg is a pretty whopping dose, and if you didn't get palpitations with that then you might be fine, it might just be going too quickly. I think my advice would be to completely overhaul your idea of what slow is, go 3x slower overall and think about moving in steps of 6 weeks and not any faster. I know some people do advocate going quite fast, but I honestly don't know how they cope with any difficulty like this. I've still been in a pickle a handful of times even though I consider myself quite cautious.

The vitamin progress sounds very good. As you get the B12 and ferritin closer to optimal you will find things easier with thyoid dose, too. For B12 the ideal is to be quite high in the range as the ranges are quite low. Ferritin can be very difficult to raise, if you've had only quite low success you could think about trying a different method of supplementing iron, as there are many different ones. With vit D over range you could switch to a maintenance dose, just keep an eye on what it's like at the end of the winter, because it can sometimes drop back after that.

• in reply toSilverAvocado5 years ago

Hey SilverAvocado. I have reduced my t4 from 125 to 112, and upped t3 from 7.5 to 10. So only 2.5 increase on t3.

• in reply toSilverAvocado5 years ago

Thanks SilverAvocado. I feel it's the balance right now. I should be splitting my dose of t3 with such a dose of t4. I feel better on 125 t4, tried changing it a few times and it doesn't work. It's a pretty consistent scenario due to my experimentation: can take up to 7.5 t3 with 125 t4 in the morning, when I drop to 112 I can take 10 t3 in the morning (but feel much, much worse). I measured frees after 7 hours of taking t3 morning dose and I have room for improvement, so as long as I know how to replenish t3 throughout the day I should start improving. Before I was able to tolerate more t3 because my morning dose was 75 mcg (also had a working thyroid at that point, now my pituitary is permanently switched off so suppresed tsh at all time no matter what, 0.1 was the highest on the lowest frees).

SilverAvocado• in reply to5 years ago

Oh yes, sorry, I hadn't realised you were already taking some T3 and the change was 13mcg T4/2.5mcg of T4. This is much closer to keeping the overall dose stable, and is not a large change like I'd thought.

I agree with you that working out how to balance T4 and T3 is an extra difficulty with this pattern of hormone, something you don't really have to worry about with any kind of monotherapy. It's hard to ever really know you've made the correct decision with it.

You're making very confident statements about those two doses that haven't worked too well for you. My question about that is are you 100% sure that the sentences you're saying are completely correct? Have you spent a couple of months on each dose and found out how you feel when things have really settled down? If you feel confused about which way to turn with them you can spend longer than 2 months and really see how things develop.

It can also be useful to get blood tests at each dose, and also take your temperature and pulse daily for several weeks on each dose, and make full symptom notes. Every drop of evidence helps you figure out where you are.

I will have a look back and see if you've posted any blood tests with either before I comment further. It's possible to get into a situation where you're a bit turned around and think you're closing in on an ideal dose, blood tests can be useful because sometimes at this point we can be really mistaken about which direction to go in.

SilverAvocado• in reply toSilverAvocado5 years ago

I found it a bit tricky to look at your results because some of them are mixed in with prose and not clearly laid out as their own paragraph. I like how you laid them out in a post I commented on some time ago, where you gave each test in the thyroid panel it's own line and also worked out the percentage through the range.

If what I can work out is right, you've had a test on one of these doses but the freeT3 wasn't timed correctly so you don't know the true levels? And you've also had results after reducing your dose for sometime and they were super low. I'd say it's well worth getting accurate blood tests, because they're a useful tool to work out where you are. It's possible you actually do have an over range freeT3 on this dose and are overmedicated on your current dose, which would explain a lot if it turned out that way.

It seems like you've been shuttling around on a few quite similar doses for a long time, but not having any clarity on which way to turn or why you're getting strange results. One thing I thought of while looking at this is to ask whether you've looked into your adrenals? The thing that might be an issue goes by many names but I think it's clearest to call it adrenal fatigue. The adrenal glands and cortisol they produce ends up doing a lot of the work when the thyroid isn't working properly, and they aren't intended to work this hard. They can end up being overloaded and burnt out, and this prevents thyroid hormone from really working properly. Particularly it can cause palpitations, feelings of overmedication on low doses, difficulty in processing T3, and these kinds of things. The symptoms you describe sound a bit like this. This is one that the NHS don't treat, so it's only for self treatment, the first step is to get a 24 hour saliva test.

Another thing I was thinking when reading about your experiences is that your Endo's view sounds quite interesting. When we get stuck and don't know which way to turn, I'm a huge believer in having a systematic plan, and they're suggesting one by just lowering T4 and swapping in T3. Even if it makes you feel worse in the short term and doesn't feel right, it's still a strategy that improves your chances of getting better sometime in the next year or two. You can work on vitamins and adrenals at the same time, which also makes the thyroid hormone work better.

There's nothing to say you can't return right back to where you are now in six months or so after you've given the Endo's plan a decent trial, if you work out you were better off here. But the bonus is that you might be better off there.

DippyDame5 years ago

You say your FT3 is below mid range in all cases....have you considered that you may not be adequately converting T4 to T3.

It may be that you would benefit from less levo and more T3....but by adjusted very slowly in very small amounts.

Since we are all have different requirements trial and error is the only way forward....slowly

I take T3-only but it has taken nearly 2 years to work out what works best for me!

Do you keep a record of the amount of T4 and T3 that you take, and when you change doses... with a note about how you feel

5 years ago

Thank you so much both! My brain is a bit foggy today so my response will be shortish I'm going back to my higher Levo dose 125 and going to tweak with splitting t3, which I haven't done on combination as of yet. I definitely need more t3, but will see if I need less t4, as I seem to feel better on 125 t4, than less (been on 95 and 100 for 2 years when taking NDT and on higher t3, but felt more like myself on Levo only, but then was lacking t3 also). Tricky! Will get there

silverfox75 years ago

Not an easy journey for you but I think basically you are may be doing too much too soon. Most of us are started on Levo, basic treatment but it takes a full six weeks to get that dose fully into your system and sadly we can’t cut corners-just doesn’t work. I can understand though your impatience but things can’t be rushed and often there is a good way to do things. So first spend time gradually raising your dose after testing every six weeks. It can easily take up to six months to get this right and a lot of patience is needed-we can’t rush it. If tests show this isn’t working for you then it’s tempting to add in T3 but for some this doesn’t work unless vits and minerals are optimal so next is to keep your thyroid meds at the dose you are on but get Vit D, B12, folate and Ferritin tested. These need to be optimal, not just in range and as been said earlier SeaSideSusie is the expert at reading results and giving advice on what the levels need to be and how to maintain it. Doctors have a misinformed premise that if results are in range then everything is fine but again it’s where in the range that is important and again if any of those are low then it can take time to get them optimal. Also be aware that if you supplement, and many of us do, that it’s usually for life. Because we have a thyroid issue we can lose those levels quite quickly so we need to keep them topped up but you may find a maintenance dose once you have reached optimal and more stable. This should also improve your readings and so then is the time to consider adding T3 if it is necessary but I would get to this stage first then ask for advice on your levels, whether you are still under-medicated and how to improve them.

Have a look at the Thyroid Uk site who run this forum and there is advice on there what to do and probably more important what not to do. But it is important to stick to the at least 6 weeks on was each dose change and be patient. I know most of us may have had a similar journey but a slow plod is often the way to go and yes it can take longer but as we plod along our body is slowly improving as well. More patience is often needed. The fully six weeks is the only way to get the right result on each dose change, we need to be aware of that.

• in reply tosilverfox75 years ago

Thank you Silverfox 🙏 it is very frustrating to see any results so so slowly, especially when you have to go to work and perform a technical job full time, cook nourishing meals etc. How people actually manage it? I used to take as much as 150 mcg of t4 and 38 mcg of t3 in one dose in the morning (this was way too high for me anyway), had no problem building it up and my vits were way worse than now...my vit D is almost over range now, b12 too range, iron over mid range and ferritin remains under mid-range all my life, I'm supplementing for years. I'm much healthier now too with food. Now I'm struggling on 125 mcg t4 and 7.5 mcg t3. The water retention part is the most difficult currently, the tightness and rings on my legs and fingers and puffy face are so uncomfortable.

I was on Levo only for a few years starting in 2012, I was still hypothyroid and was converting poorly looking at my results from back then. That's why my GP decided to move me to armour in 2015. First time ever I was able to lose that puffiness, was happier , more energetic, started running and gym etc. Then I was massively overdosed for many months and then my tsh switched off. I was never able to bring it back to work and since then I struggled to find my physiological dose . My tsh is 0.1 on ft3 ft4 low in range, like I have a central hypo of some sort after suppresive doses of armour. Even more importantly with this situation I need t3, as my thyroid is almost shut down. I agree - need to wait longer, but my life circumstances just simply don't allow me to do it sometimes

silverfox7• in reply to5 years ago

Down side it can give you inaccurate readings so stand to be overmedicated which can be as detrimental as under medicated so often making it more confusing.

• in reply tosilverfox75 years ago

this is why I am always very confused, but thankfully right now I know that I am just undermedicated, with ft3 being under mid-range in the morning or just over-range 7-8 hours after taking the dose.

silverfox7• in reply to5 years ago

Basically we can’t afford to overdo thinks or else we are really on our knees. It can be a hard lesson to learn.

Auryn_Lieb5 years ago

Perceptually, the effects of T3 can't be separated from the neurotranmitters that it affects. Too much thyroid will lower norephinephrine and it makes people feel as if they don't have enough thyroid while in fact they are deficient in norepinephrine because too much thyroid can shut down norepinephrine receptors. I don't have the reference right now but you can good "thyroid" and "adrenergec transmission" on pubmed.

Endocrinologists are not trained in neuroscience so they don't understand that connection. T3 works when people have excess norepinephrine, if you don't have enough it can make you feel worse. Psychiatrists who prescribe thyroid to boost the effect of antidepressants have already discovered that some people feel better with T3 and other people feel worse, it all depends on individual chemistry.

I highly recommend that you read Ken Blanchard's book "Functional Approach to Hypothyroidism" where he explains how T3 actually makes people feel hypo and that "less is sometimes more". Apparently he built his practice on rehabilitating patients from T3 who had problems similar to yours (he's no longer alive). That book was really eye-opening for me. You can also check out the quick gist here (and the author of this blog herself writes that she had a very mixed experience with T3).

chronicfatiguediagnosis.com...

There are also some other good thyroid articles on that site, such as the one thyroid and serotonin (5HT) connection. Although I suspect that in your case norepinephrine (NE) is the more likely to be the culprit since it regulates the mental function and energy expenditure, and also NE requires iron for synthesis.

5 years ago

Thanks Auryn_Lieb, that's interesting. But I am low in ft3, I don't have high readings. I used to take 3-4 times more than now. I agree that less is more, but this time I'm on the low side of spectrum with a switched off thyroid. Thank you for sending this on!

helvella5 years ago

When you see a user name of Hidden, it means that the person is no longer a member of this forum.

We often close posts that were originated by people who have left - there is no point in wasting our time making replies. Occasionally, the thread might still be active and popular and will be left. More often, it is simply a case of none of the admins noticing!

I shall now be closing this post to replies.