I can no longer tolerate ANY T4?

[GKeith]

I had 2 teeth pulled 30 days ago, and then 2 more just last Wednesday, 7 days ago and thought they were the reason I was having problems with the thyroid medication. But, now after lowering the T3 strength and having these headaches every day for 10 days, no matter the strength, I am ready to give up and say that I can no longer take T4. I get terrible TSUNAMI headaches now no matter what strength I take.

I was in a similar situation 2 years ago & my GP sent me to an endo who started me on 30 mcg of T3 with 50 mcg of T4 even though I told him I refused to take anymore T4 because it gave me KILLER HEADACHES; MORE LIKE TSUNAMI’S. Since I had started taking the 50 mcg T4 with the 30 mcg’s T3 he assumed I tolerated T4 & raised it up to 75, a year later even though I said I was good at 50 mcg T4. He then lowered the T3 to 20 mcg T3 but I had felt I needed more T3 and when he upped the T4 to 100 mcg of T4 he asked me how much T3 I was taking (he had forgotten) & when I said 30 mcg he lowered the T3 to 20 mcg, instead of the 10 I knew he would have, which is the same amount I was (already) taking. The 100 mcg T4 & 20 mcg T3 lasted exactly 45 days before I began getting the tsunami headaches again. It has been 2 weeks and the Tsunami headaches are roaring through my head every morning at about 4-5 AM & only go away after I take a dose of T3 (7.5 mcg’s of T3). I am stopping taking any T4 until next week when I see my endo again. I may be able to “stomach” 50 mcg of T4 (again) but I will not go any higher than that. Anybody ever experience anything as bizarre as this before. I still can’t get my mind around exactly why it is I was able to take 75 mcg T4 for 6 months & then 100 mcgs of T4 for 6 weeks before ‘crashing” or why the T3 makes the headache go away?

[Jazzw]

There are definitely some people who just don’t get on with levothyroxine full stop, and yes, just like you, many of those people were ok with it to start with.

It’s hard to say why it stops doing the trick. Perhaps because over time, the body increasingly finds it hard to convert the T4 to the active form T3? Much of that happens in the liver but it happens other places too (I’d have to google to find them but trust me on that one). And it would only take a mild, chronic deficiency in thyroid hormone levels for a whole heap of secondary consequences: your gut becoming less efficient at absorbing vitamins and minerals, which in turn reduces the conversion rate of T4 to T3 even further.

After a time, you can be taking in a good amount of levothyroxine but be unable to convert hardly any of it to T3—and we see this a lot on the forum. People regularly post with an FT4 result high in range or even over-range with an FT3 result scraping along the bottom of the range. Their doctors tell them their thyroid blood tests are perfect but they feel awful. We know that’s because their T3 levels are dire—doesn’t natter how good their other thyroid blood test results are!

Sometimes, people can improve their conversion of T4 to T3 again by improving their gut health or by supplementing missing vitamins and minerals. But that can take a while and often the fastest way back to health is to take liothyronine (T3).

It’s at this point that many people seem to find that the levothyroxine they’re taking doesn’t actually seem to do a lot and speculate that it’s only the liothyronine that’s working. By and by, if they’re in a position to do so, they experiment with ditching the Levo altogether and switch to T3 only, often with brilliant results.

Over time, when sufficient healing has happened, some can reintroduce levothyroxine again and reduce their T3 dosage. Some never take Levo again, finding it makes them feel ill. You seem to be in that camp.

I think we could probably speculate for hours around why (your last post got well over 200 replies ) but I don’t know that anyone really knows. Perhaps it’s just a question of what suits one person doesn’t suit another. It could have something to do with what caused your hypothyroidism in the first place, it could have something to do with your heritage, it could have something to do with your dietary choices, etc.

So maybe now it’s time to give up on Levo and try to establish what would be the right amount of T3 to keep you on an even keel?

PS—you have my every sympathy over the dental work. I’ve had a mare of a time with a particular double molar, which I’m happy to say is no longer residing in my mouth, after 2 years of misery. Hopefully now that the work’s been done, you’ll get some respite from the discomfort.

[GKeith in reply to Jazzw]

Thanks for your very intekkigent, thought-out reply Jazzw. I really appreciate the time & effort and fully realize that only "one of us" could understand. I believe I need to return to the original "dose" of 50 micrograms of T4, (the 50 pill is all white and has no fillers of any kind (don't really know if that matters wirh me) & 30 mic's of T3, which I felt great on for about 9-months before going up to 75 T4, staying with 30 T3. I hope I can work this out because so much of my feeling "normal again (no tsunami headaches) depends upon it.

[WildDeer]

Hi GKeith, You have my sympathies . I had a molar extracted several weeks ago, and have had a lot of sharp pains in my jaw and head, and generally felt that my metabolism was thrown off balance. I'm on T3 only.

I researched about molar extraction, and it is quite common for people to have neurological and other problems afterwards because of the big nerves involved.

I had 3 sessions with a cranial osteopath , (they are educated to deal with this problem), and she has been a big help in returning me and my old cranium to relatively normal.

[GKeith in reply to WildDeer]

Well, I guess I may have to try a cranial osteopath. What the hell, when it comes to my metabolism I've tried just about everything else, except NDT, which I may now try because it's either that or T3-only. BTW, how much T3 do you take & how many times a day, if you don't mind my asking? Peace be with you in these trying times.

[WildDeer in reply to GKeith]

I take 50mcg daily in 3 doses: 25 / 12.5 /12.5. A bit less in very hot weather, a bit more in freezing weather. With the cracked molar and antibiotics and the nerve block anaesthetic, I found I couldn't process the T3 well, and kept going very hypo.

The cranial osteopathy worked the trauma out of my skull and has enabled me to feel relatively steady again. It has taken 2 months.

T3 only is definitely the treatment of last resort , but even the T4 in NDT makes me feel unwell, so for the likes of me it's the best possible option for quality of life.

I wish you well.

[GKeith in reply to WildDeer]

Thanks so much for your history. I am probably going to try NDT & then, if it doesn't take, T3 only. T4 has never worked for me without leaving symptoms behind. Peace be upon you.

[minnie2060]

Hi GKeith, Your post attracted my attention when I saw that you were having problems with thyroxine after having 2 teeth extracted.

I also had a tooth extracted about a month ago. It was not a big tooth but it had an infection at the root. I was expecting to experience a couple of days of discomfort but it turned out to be a week of agony. To cut a long story short I went to the doctor and got anti-biotics for the infection which was now raging. I had been on painkillers 24/7.

After a couple of days the pain diminished but I was overtaken by overwhelming exhaustion. I have taken 100mcg of thyroxine for 34 years without problems. Now I could not go through the day without lying down several times and then dragging myself about. I continued with my usual dose of daily thyroxine and usual vitamins during this time. Also, could not think straight, just totally exhausted, head in a fog.

I started googling 'exhaustion after tooth extraction' and found that it can happen. I noticed that there were lots of people with thyroid conditions reporting this problem.

Managing thyroid medication can be tricky and your case sounds very tricky. You have not said whether you still have part of your thyroid gland. I am no expert on thyroid problems but have learned over the years that it is 'you' who must be in charge of your thyroid medication because you are the one living in the body with the wonky thyroid not the endo or GP. If you are going well then stick to your guns and do not allow them to fiddle about with the meds.

I am getting better every day but I think it will be a couple of weeks before I might be back to normal. I hope you will be feeling better soon.

[GKeith in reply to minnie2060]

Yes, I am feeling much better, no thanks to T4, which I have been taking for 30 years. I still have my thyroid and, as far as I know, it has never been "damaged" whatsoever, except by this barage of pills. About a year ago, a natural doctor I had switched to told me I could just stop taking the T4 because I was so "healthy." The problem was that, after about a week of not taking the T4, I started feeling even colder hands & feet and my throat was becoming very hoarse when I talked. The real problem, though, was that she (the "doctor")never explained why I could stop taking the thyroid meds & what, if anything, I could replace the pills with. So, I quit her for another GP. I would think (thought but was wrong) that a thyroid "specialist" (there are none, at least in Florida) could see how much T4 your thyroid actually produced (say 100 mcg's of thyroxine and then there being a set number it needed) subtract or add the amount your thyroid needed added to what it wasn't getting and take that amount to get well. Obviously, not well thought out or researched but not one endo, specialist or doctor of any kind ever explained anything about hypothyroidism to me, and to this day, has not. I now explain it to them and see the looks of "shock & surprise" on their faces when they have nothing to say in return, because of this: THEIR misunderstanding totally of the thyroid gland.

Peace be upon you, minnie 2060, in these trying times for us all.