24 Male. I was on 200mcg for 5 years prior to doing a complete trial off the medication for 17 days on Nov 24 2022 (yes, a stupid thing to do, my identical twin brother did and was fine and no longer needs levo). Ended up with a tsh of 224 and FT4 of 6 (ref 9-19), FT3 not tested. Felt awful.
Went back on 200mcg after this, thinking everything will be okay and I guess I need levo and after 8 weeks I felt all overmedicated symptoms (extreme brain fog, fatigue, insomnia, fast heart rate). tsh 0.04 and FT4 18 (ref 9-19, levo taken before test keep this in mind).
Doctor lowered me all the way to 125mcg, yes a huge drop. Switched from hyper back to hypo, tsh 1.81 and FT4 13(ref 9-19). FT3 4.2 (2.6-5.8) Extreme fog and fatigue. These numbers are "in range" and I discover that's a bunch of nonsense.
Increased me to 150mcg, tsh 1.09, FT4 14 (9-19). FT3 4.8 (2.6-5.8) - waited 12 weeks for this test
TESTING at 9am, with no LEVO before. Still extreme fog and fatigue, can hardly function or think.
Currently on 175mcg, just got my new blood test, testing at 9am without levo before. (waited 6 weeks for this test)
tsh 0.37
FT4 14 (9-19)
no FT3 results (randomly just didn't add it..?)
For your reference, when I felt normal on 200mcg my blood was as follows:
tsh 1.46
FT4: 18 (9-19) - testing not done proper, levo was taken before so more like 16.5-17
no FT3 result
Vitamin D was 46 (reference 75-250), and is now 119 (taking 4000IU daily). I am in Canada.
I am waiting a full 8 WEEKS on 175mcg to confirm if it's the correct dosage or not. Currently at week 6 feeling foggy and fatigued, though some improvement but not normal yet.
My tsh result seems out of whack, and my FT4 still seems low compared to when I felt normal. I am not sure what caused me to become overmedicated and the doctor doesn't either, but I want to avoid that at all costs because that is the worst.
If I don't feel normal after 8 weeks, should I go straight back to 200mcg? My tsh would for sure be "overmedicated", or try 187.5? I just don't want to keep this going for any longer. Any thoughts are very much appreciated, I have learned a lot from this group.
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Johnfishman22
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Appreciated. Currently taking 4000IU vitamin D, increase to 5000IU?
Will request. Doctor is good and listens, any other tests you recommend?
Is my tsh of concern if it dips below the range? My FT4 is a lot lower than when I was on 200mcg feeling normal. tsh result doesn't make sense to me if FT4 is not that high at 14 (9-19).
I'm afraid it will take the time it takes. We don't really have any control over it. And increasing too fast can be countre-productive. I'd go to 187.5 mcg if I were you. You probably shouldn't have gone straight back to 200 mcg after 17 days of nothing, but started back on a lower dose.
Was there any particular reason you stopped completely stopped your levo? Or did you think you'd been mis-diagnosed?
I agree, suddenly stopping then going back on 200mcg which is a big dosage messed me up. Even though it was fine for years on end.
I have an identical twin brother and he stopped levo, always was on a lower dosage than me. Not sure why he stopped, but he has 0 symptoms of hypo and feels perfectly fine. Since we are twins, the doctor said I can try it if I want, so I said sure. Biggest mistake I have ever made. I was uneducated about hypothyroidism at the time and never had symptoms before even when first diagnosed and didn't know the consequences would be this severe.
After about two weeks I started feeling super foggy, which has never happened to me in my life. I thought just going back onto the dosage I was on for years would fix the issue, but it messed me up even worse.
I have had very high antibodies in the past and my doctor says I have autoimmune hypothyroidsm, never directly told me hashimotos before.
I am at week 6 on 175mcg and have the pills to go up to 187.5. I can go up in dosage now or wait 2 more weeks. I haven't had much improvement on 175mcg at the 6 week mark. What do you think?
NHS doctors don't call it Hashi's. They call it Autoimmune Thyroiditis. That can mean one of two things: Hashi's with a goitre or Ord's without a goitre. But on forums they both tend to be called Hashi's. Do you know how Hashi's works?
What about your brother? Does/did he have high antibodies?
You can increase dose after six weeks. But maybe get more bloods first?
I am in Ontario, Canada. My family doctor looked at both of our necks on a checkup and found that our thyroid was enlarged at 16. He also had antibodies I believe.
No, I don't know how hashi's works. My mom also takes levothyroxine.
My blood work is from 3 days ago exactly at the 6 week mark on 175mcg:
OK, so your FT4 is just mid-range, which is usually too low for most hypos. So, good idea to increase a bit.
So, Hashi's, as you know, is an autoimmune disease. That means that your immune system, for some unknown reason, is attacking your thyroid and slowly destroying it.
Every time there is an attack, the dying cells release their store of thyroid hormone into the blood so that FT4/3 levels rise sharply, and the TSH slowly drops. This is called a Hashi's 'hyper' swing. It is temporary. As the excess hormone is used up/excreted, the levels will come down again until you are hypo once more.
It's worth noting that, after a 'hyper' swing, before levels go right back down again, it is possible to have quite a long euthyroid period. This is when a lot of people become convinced that they have somehow managed to 'cure' their Hashi's, and that they no-longer have a thyroid problem. But, this period will eventually pass, and the hypo symptoms will start to reappear. This could be what has happened to your brother. Doctors tend not to know anything about all that!
I appreciate the info, will let my brother know. He needs to get his blood checked but definitely has 0 symptoms. He has been off the pills for almost 2 years.
Can levo also suppress function of your thyroid? I know it's not making as much as it should, but does that suppress any function it does have? This would explain why I became overmedicated on a dosage that was normal for me for years.
When I went off it, probably a huge shock, maybe my thyroid tried it's best to produce what it could, and it happened so fast when I went off it then went back on, so I had that extra thyroid hormone being produced ontop of the normal dosage of 200mcg. Only explanation I can think of, doctor didn't know why.
Yes, it does. It puts your thyroid to sleep, so to speak, because it reduces TSH. And, without the stimulation of the TSH - Thyroid Stimulating Hormone - the thyroid cannot make thyroid hormone. But, it doesn't stop it permanently. If you come of your exogenous hormone, the thyroid will eventually go back to making what it could before you started taking it. You'll still be hypo, because the thyroid cannot regenerate, but it will make as much as it can.
I was told at 16 I had an enlarged thyroid and had autoimmune hypothyroidism, along with my identical twin brother. I didn't really have symptoms but just went on levo and they slowly increased my dosage without me noticing symptoms, or at least they were not severe enough for me to pick up on.
Hey Grey Goose. I wanted to run something else by you since you have helped me. I have had a headache since september 16th. It's dull behind my eyes/forhead, was painful the first day then advil/tylenol keeps it under control but it's constant and has not left. I am not sure if it's related since when I was way worse hypo (tsh 224 and FT4 6 (9-19)) I had no headaches, and when overmedicated also no headaches that stayed this long. I have had headaches in the past for max 10 days, throughout my life, but they always go away usually just taking an advil and sleep. This happened last year as well in September for 10 days, I was prescribed triptans but it went away and I never took them. Not sure if this is thyroid related but wanted a second opinion. Appreciate it! I have a doc appointment for my thyroid Oct 16th. Didn't hit my head or anything, just randomly came on one night and it was VERY painful, ended up throwing up.
That's a tricky one. Headaches can be thyroid-related, but there are so many other things that can cause them that it's difficult to say for sure that these headaches are thyroid-related. I have to say, I really don't know. But, it would be good to get your doctor to check them out, because you just never know. Sorry, I can't be more helpful.
So your doctor told you that you could stop levo for the only reason that your brother did not need it?! That is amazing...and I thought I´d heard it all. It´s not your fault, of course, but calling your doctor incompetent would be too kind. I hope you end up all right and have since found another doctor!
I take responsibility because it was my choice, but he never informed me of what could happen and never tried to stop me from doing it. I have felt the worst in my life for almost an entire year because I went off my dosage for 17 days. I never had symptoms and didn't know what could happen, very ignorant at the time
I was told once by a doctor that I could stop levo since my TSH and FT4 were in range and I was symptom-free. So, he seemed to think it was like antibiotics where you feel fine and it means you are cured. Thank God I knew enough at the time not to listen to him (and I never went back there), but if someone had told me that at the very beginning of my thyroid journey, I would simply have stopped levo..
what a coincidence. My doctor just called me to say he looked at my blood work. Said my FT4 is lower than what we aimed for and said if I don't feel good I should alternate between 175mcg and 200mcg. Is that the same as 187.5?
John, your thyroid has been messed with quite a lot. I think it needs a period of stability to catch up with all the changes. Whatever your next dose is, I would be inclined to stay on it for longer 10-12 weeks. Changes can happen after 6-8 weeks. But, only you can decide. Good luck 🤞🏽
Thank you, I agree. I have slowly increased from dosage from 125mcg to now alternating 175/200, and my previous dosage before all this was 200mcg. Will be waiting a good 10 weeks or so, hoping to see some relief with this brain fog, it seems like even if the dosage is close it has to be EXACT for it to work. Getting there slowly, appreciate the help from this forum or I would have been stuck thinking my numbers were "in range" while feeling like crap.
As I understand it, when on T4 it isn’t distributed in your body evenly. Hence, some symptoms may improve, while others worsen and indeed new ones develop. I think of it as one labourer expecting to fix all your house at once. It can’t. So while it fixes the electrics, the water has to be switched off. While faxing the bathroom, the water has to be switched off. So, it all just ends up taking time. As you get closer to your right dose based on how you feel, stay on it for at least 10 weeks would be my inclination. This is just based on my personal experience. Anyway.
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