I've been hypo now for a bit more than two years. Probably three or more, but diagnosed 2 years ago, and also taken levo since then. As doctors can be a bit difficult, and I have felt with no other choice, I have raised my levo dose myself several times. Otherwise I would still be on 75mcg! I don't live in the UK and here I've got almost a years worth of levo at once, so I've had some wiggle room. 'fessing up in a doc office is a bit of an issue, but well, I gotta do what I gotta do...
So, my main symptom has always been that I'm feeling weird in my head. It's this kind of weirdness that's really hard to describe. It started 2.5 years ago, when just one week while driving(which I do for living) I realised I felt... weird. Hard to concentrate, spaced out, woozy, just weird. Had to turn down the radio and everything, didn't want to turn my head left or right, because it would just almost disorientate me, bumps on the road felt the same. What's interesting is that when not moving, I was fine. This weirdness was only there when moving. After a week or two, it went better, but not ideal. These days it's sometimes better, and sometimes worse. Not nearly as bad as back then, but far from ideal. I would feel it also when walking. It's as if my brain is loose. Or made of jelly and wobbling or sloshing around. Again, it's not there every day, but often enough. To be fair, I don't know for sure if it's a hypo symptom at all, what would you people think?
I have also seen an optometrist who examined my eyes and found that my extraocular muscles are weak, making the gaze fixation weak. Maybe that could explain some of the weird feeling in head? Could being hypo affect eye muscles like that?
Also seen an ENT doc, she did some tests and concluded that it wasn't an inner ear problem. At a later appointment(I had symptoms again) hinted that it might me in my head, offered antidepressants and suggested therapy. Oh well. Also seen a neurologist who was very adamant that I'm just emotional, referred me to a psychologist who didn't do much, got offered some herbal supplements and there was talk of antidepressants. Oh well.
Just 3-4 months ago I also started having strong palpitations when exerting myself, like walking up a steep hill or pushing/pulling heavy objects. My heart rate would go high very quickly then, too. Even had to go to ER with it, as the last time was really bad after just moving some boxes around. Had several cardiologist appointments and heart tests - everything came back OK. Stress test, echo, holter, CT scan. Stress test and Holter did show that I had PVCs which were deemed benign. Looking at the time frame on the holter report, it was clear that they happened when I exerted myself. I was cleared and literally told to stop worrying and start living...
Now, when I was first diagnosed, my bloods were such:
December 2021
TSH 14.84 (0.4-4.0)
FT4 12.15 (11.5-22.7) 5.8%
FT3 4.77 (3.5-6.5) 42.33%
TPOab >1300 (<60)
In the last two years then I have raised my dose from 75 to 100 to 125 to now 150mcg. Every time by myself, as docs are just saying that everything is in range so it's all right. Sigh. But I had not felt all right, and just took matters into my owns hands. With the help of everything I've read in this forum.
Something to note, that when I first started levo, I started feeling better. For about 2 weeks. Then it just kind of went back to square 1.
When I increased to 100mcg, I started to feel better, and stayed quite ok for 2 months. After that there was a decline and I didn't increase until I had been on 100mcg for 8 months.
Then when I increased to 125mcg, I actually didn't feel any change.
I stayed on 125mcg for over a year, increasing to 150mcg just this January.
I'm convinced that the PVCs and tachycardia that I had in autumn was because of being hypo. Even though my GP and endo both were hinting that "maybe you're taking too much and this causes it". When I increased my dose, it took maybe 2 weeks and I didn't have these episodes anymore. And I had done no other changes whatsover. I know the docs would just say it's a coincidence... but I don't think so.
So, today I went to get my bloods checked after 8 weeks on 150mcg and these are the results:
TSH 0.28 (0.4-4.0)
FT4 14.1 (9-19) 51%
FT3 4.89 (2.4-6) 69.17%
Previously on 02.01.2024(125mcg):
TSH 2.7 (0.55-4.78)
FT4 15.4 (11.5-22.7) 34.82%
no FT3 (test at endo's office)
Before that in October(125mcg):
TSH 2.72 (0.4-4.0)
FT4 11.8 (9-19) 28%
FT3 4.52 (2.4-6) 58.89%
And in September(125mcg):
TSH 1.56 (0.4-4.0)
FT4 13.4 (9-19) 44%
FT3 4.17 (2.4-6) 49.19%
Now, my question is, why is my FT3 so much higher in the range than FT4? Isn't it supposed to be the other way around? In fact, I have had such pattern in several of my results, usually FT4 in 20-30% and FT3 40-50%. But FT3 seems to swing about much more, has been 20%, but also 60-70% before.
Symptom-wise I'm not a perfect easter bunny yet. Head is feeling weird, and the last week or so I have felt (this time much milder) palpitations again. I'm also perhaps slightly depressive, although that's a usual winter thing. But this winter has been worse than usual.
I'm tempted to trial a dose of 162.5mcg, do you think that would be a good/bad idea? My Ft4 is only 51% (the first time it even has reached the halfway point!), so I don't think I would go to too much territory? And FT3? I'm not taking Lio or anything else containing T3. Would it stay where it is, which seems already quite high? Then again, it has already been this high before, and later lower again. Is my FT3 reading even anything to go by if it swings so much?
Whew, this was long.. Hopefully not way too long. Thank you who made it to the end. š¤
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nanomaster
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There are definately more knowledgeable members on the site whose advice you should take rather than taking what I have to say into account. If they disagree with what I say I hope they will jump in and correct me.
Often 1.6 times body weight is used to get an idea of likely final dose, which would be around 158.4mcg levo. I think it might be possible that you may have a genetic mutation similar to one which I have where 1.3 times body weight might be applicable to finding your final dose. Using 1.3 times 99kgs, this would give a likely dose of 128.7mcg. The mutations can likely result in giving a higher T3 to T4., or higher T4 to T3. In the UK we can test privately for DIO mutations which help control T4 to T3 conversion, but I do not know if this is possible in Estonia or not. Ancestry .com testing and using the raw data from it on other sites might be a route for you to get some genetic insights, but is not the route that I used.
It looks as if a trial of 137.5mcgs might be a sensible option for you to try, as 150mcg took your TSH just below range. A dose of 137.5mcg might get TSH in range, which is supposed to help with conversion, and has the added bonus of keeping your doctor happy, as your doctor will probably freak out if TSH is below range.
I haven't done any genetic testing, even though in my country everything gene-related is quite hyped. I'm haven't sought out these tests yet. So far I have understood that the DIO genes would cause people to be poor converters? I.e. T4 at 80% and T3 30%? In my case it seems I'm a hyper-converter however!
I have TSH of 0.28. Again. I had these strange results some 18 months ago, TSH 0.28 but both frees only 20-something %. Thinking back, something must have been wrong there? And then 2 months later TSH was up to 8. Quite a turnaround.
As I just started feeling better on 150mcgs, I wouldn't want to lower it just now. Don't want to go back to feeling like I did in November. š± As for doctor's appointment, yes, it could be a problem. There would still be several months until then, though. Right now I would just want to feel good again.
People with a DIO2 mutation are often poor converters. I have a problem with DIO1 rather than DIO2, and can convert. I made the mistake of supplementing Selenium for a time and ended up 441.18% through the range for Selenium, which upped my conversion to 3.18. At DIO1, I have a poor converter and a rapid converter. I also have up-regulated selenium which is the result of a double CBS mutation. Selenium helps with conversion, and you say that you are a super converter. CBS can be checked on some gene tests. An example of a test result I had is FT4, minus 65% with FT3 91.89% before given thyroid medication. I have been developing thyroid nodules and I believe this result is an example of a thyroid failing, where the body puts all effort into T3 production to sustain life, in preference to T4. I believe the nodules have likely developed to secrete T3. Do you have nodules? Now that I have thyroid medication , sometimes my FT4 is higher than FT3, but at other doses FT3 is higher than FT4. I think , in my case , thyroid medication has now stopped the nodules secreting T3, as I am taking T4 levothyroxine, which I am converting to T3.
A gene thyroid test and a gene test which includes CBS, as well as a scan for thyroid nodules might give you some insight. Your result of TSH 0.28, with both frees at 20% ish may be pointing to Central Hypothyroidism where TSH is failing to signal to raise thyroid hormones. I, and lots of forum members , have weird thyroid genetics suggesting poor signalling for the thyroid via the pituitary and/ or hypothalamus.
If you have several months only until your next doctor's appointment, this should be just enough time for a 137.5mcg dose to likely raise TSH into range if your doctor is likely to freak out if under-range. If you don't think it will be a problem , and you feel better on 150mcg, by all means stick where you are. I'm a novice at this, and fumbling in the dark like yourself. You do not appear to be a typical patient which might be all your doctor ever encounters. I think genetic testing would be a good way forward, if affordable to you.
Bouncy vision is a very apt way to put it. It's like my eyes can't really keep track when I'm moving my head. Kind of like the older video cameras, without the stabilisers etc. Or just when moving it too fast and. I'm not sure if my bouncy brain is connected to it or a separate issue, though. And it would make my life so much easier if I just could describe it better! Hard to make out what it is really.
So far I have understood that higher FT3 than FT4 would mean that the thyroid is struggling to do its best to keep up producing T3 to keep me going. Meaning, that it's still not happy? I've seen a few threads with FT3>FT4, but then it's often from people taking T4+T3 or NDT. Or yet untreated. Like my results before starting levo.
I'm weighing 99kgs right now. Only just got under 100 again. I have gained 15kgs in the last two years. There have been periods where I have sugar cravings and feel like eating pastries and ice cream every day. And kilos keep piling. When I have stayed off sweets then my weight seems stable, but shedding it is harder than it used to be.
Additional tests, from this January(2024):
Ferritin 65.2 (22-322) - in March 2021 it was 30, then I started eating more read meat and it rised to 50, then 65, topping at 115 a year ago. I was eating quite a lot of meat then. At some point I grew a bit tired of it, and ferritin goes down quite fast. And I'm not sure 115 is even very high for a man eating meat daily?
B12 649 (156-672) - has been high all the time, usually just under the top of the range. Two times it has been way over the range too, once almost double. But then I might have inadvertently supplemented while drinking some protein drink or soda or something like that. They seem to be very keen on putting vitamins into drinks these days.
Vit D 80 (>75) - previous results have been up and down, lowest at just 37(March 2021, before I had any problems, funnily enough). When supplementing it's been 95-105. Right now I'm trying not to forget to take it daily. Often forgetting, though. It's D3+K2 and drops, rather than capsules. Are these also ok to take in the morning, i.e. within 4 hours of taking levo? As I don't have to swallow them.
Folate 14 (>7.64) - gotta love these ranges, huh? A year ago it was 21.3 (7-46). At 36%. Not sure is it enough?
I'm only supplementing with D3+K2. 4000iU of D3 and 90mcg of K2.
A month ago I had the celiac test done, that came back negative. Last summer I tried to go gluten free, but my willpower was not quite enough yet. I eat a fair bit of dairy, mainly cheese, cottage cheese, greek yoghurt, cream in coffee.
Something to note, that when I first started levo, I started feeling better. For about 2 weeks. Then it just kind of went back to square 1.
This is an absolutely classic result of needing an increase in your dose of thyroid hormones. Doctors usually do start prescribing Levo at a lower dose than the patient needs in the end, because having more thyroid hormones after a long time of having too little can be difficult for the body to tolerate and adapt to. So raising Levo slowly (increasing dose by 12.5 or 25 mcg per day after testing every 6 - 8 weeks). The closer the person gets to their optimal dose the more likely they will need to raise or lower dose very slowly, e.g. by 6.25 mcg per day, and will need to test with longer gaps between testing.
It is often necessary to cut tablets to get to one's optimal dose. Or, in some cases, you might need a different dose on some days a week . I do this. I currently take Levo - 50mcg Levo 3 days a week, and 100mcg Levo 4 days a week. I did previously go up to 50mcg x 1 and 100mcg x 6 but that made me feel slightly unwell. Lowering it has been successful in improving the way I feel physically, but I think my brain is functioning less well than it did, particularly my memory. I also take T3 but my dose of that has remained static throughout my experiments with my Levo dose.
There are a quite a few people who find that one part of their body can be happy with one dose of thyroid hormones and other parts do well with another dose of thyroid hormones. It's very annoying, but the only thing we can do is experiment to see which dose does best overall.
I calculated my daily dose of Levo based on taking 50mcg per day 7 days a week, and also taking 100mcg per day 7 days a week, then calculated the average doses for in between those two extremes. See the picture. I hope it is understandable.
-There are a quite a few people who find that one part of their body can be happy with one dose of thyroid hormones and other parts do well with another dose of thyroid hormones. It's very annoying, but the only thing we can do is experiment to see which dose does best overall.-
That's something I've wondered about too. When I had the issues with palpitations in autumn, I didn't feel so much weirdness in my head. Maybe I was just too preoccupied with my heart?
Or could it be that the symtoms would change, depending on hormone levels? Some might go, and something else comes and takes its place. And once that new symptom would be resolved, the old ones come back?
I have not felt bad at all when raising doses. When I went from 125 to 150, then I did do 10 days of alternating 125 and 150, to make the transition smoother, in case I would need it.
The ENT doctor had me wear a sort of goggles and look into one spot on the wall, then moved my head suddenly in different directions, with me looking at that same spot. Apparenlty it was all normal. I think nystagmus was mentioned in the health records, but in wording like "nystagmus: normal" or such. So, in fact she didn't "look" deep into my ears, rather than checked the reflexes.
Also I would think the optometrist would have picked it up? Though I didn't move my head there. I had to look through different instruments, prisms and lenses, that would "bend" my eyes in different direction, and in one test it was apparent that my eyes couldn't hold them in the needed position and veered back. Sorry if I'm not making sense here.
In what way were you feeling unwell when levo dose was too high? I'm thinking that should I decide to increase my levo dose, what should I look out for? (Should it happen to be too much)
I forgot to mention that having low iron and/or ferritin (iron stores) can cause palpitations and/or tachycardia (fast heart rate).
It's good that your ferritin rose when you were eating a lot of meat - at least it demonstrates that you can absorb iron.
But, like you, I can get tired of meat, and I don't absorb iron well either. The only way I've found I can deal with this is to find an iron supplement that I can tolerate and I have to work out how many times a week I have to take it with repeated testing. My maintenance dose for ferritin has varied in the past from one high dose tablet, 2 days a week, or the same dose up to 5 days a week. Currently I don't take iron tablets at all, but I would go back to iron if my levels dropped a lot.
I have tested for iron once, and I think it was in range, but quite high. So I would be a bit wary of taking it as a supplement. Think I'll try eating a steak 3x a week.
I also have quite low stomach acid. I've done the diy test with baking soda many times, and I never had any reaction at all... For some period I tried drinking a glass of water with apple cider vinegar in it, but I can't remember if it did anything. Tried capsules of Pepsin and Betaine HCl, going up to quite high doses before feeling a very slight sort of warmth. But supplementing in that way was getting expensive.
When I was more meat-heavy in my diet, I would feel that I don't "get" everything from it. Had often a sort of fatigue in muscles and feeling more tired. Always wondered if that was because of low stomach acid? Never had problems with reflux or gerd or anything like that, thankfully.
Well, the thing in your head, my first though was: B12. But that doesn't seem to be the problem because it's high. So, I don't know.
For the FT3 being higher than the FT4, I would put that down to the Hashi's swing, sounds very much like it. But it's really not because you're a 'super-converter'. You cannot convert more T4 than you actually have. And the T4 is never converted 100% to T3, more like 30% tops. So, as you aren't taking any, then it has to be down to the Hashi's. And, there's not a lot you can do about that.
I can't think that adding in more levo would be a good idea. We don't actually know how good your conversion is, but at least some of it will be converted to T3, and you don't appear to need any more of that. Is it a problem for you that the FT3 is higher than the FT4? If not, then don't worry about it.
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