CATCH-22 GETS ME NOWHERE?

[GKeith]

I took T3 only, 30 mcg’s last week, 10 mcg’s every 8 hours, and felt fine. Then, to please my endo, again, and myself, I suppose, I added T4 @ 75 mcgs, the last dose I was on before I crashed into head-aches, 2 months ago, thyroid storms more likely, constant but I’ve stayed once again, on the 75 T4 now for 2 weeks but now it has come back to haunt me. I believe now that I either cannot take T4 or the T4 is converting to T3 and making my dose to much T3 and/or the T4 is turning into RT3 & causing the head-aches. I will, now, stop the T4 totally, starting tonight, once again, because of the headaches &, again, every night becomes a nightmare. I’m constantly afraid to take the 75 T4 with the 30 T3 & even when I cut down & take 73/4 T3 three times a day, with the 75 mcg T4 instead of 10 mcgs 3 times a day, going from a total of 30 T3 to 22.5 mcgs, it seems to be too little T3 to rid me of the headaches. I’m damned if I do & damned if I don’t, scared to take the 30 mcg of T3, instead of the 22.5 and scared not to take it. It makes no sense & I’m going around in circles, with my dizzy headaches. Anybody got any ideas? The endo has, basically, given up; he’s awaiting my blood results scheduled for 45 more days from now; it’s all he ever does is look at the blood tests. I believe I should get NDT, because I know people who take it & just add some extra T3 alongside of their prescription dose. Any thoughts? I feel, once again, like I’m running in circles but am helpless to do anything about it. I’m in a Catch-22.

[Lalatoot]

Last week you took T3 only; this week you added 75mcg levo to that T3. You had not taken levo for 2 months prior to this.

If this is correct no wonder you feel ill. You are changing too much too often so your body (which likes stable dose) doesn't know if it is coming or going.

Given your past problems with T4 I think that you should have started on a max of 25mcg added to your T3. Low and slow.

I don't think that blood tests in 45 days will be of much use as you will not have been on a stable dose and given the body time to adjust in that time.

As you say you are going round in circles. You can do something about it though. You can stop and think what you feel you should be on - work your way to the doses if necessary - and then stick with it for 8 weeks. Only then will you get valid blood tests that may guide you.

I have been adjusting levo and lio doses for over a year so can sympathise that it is not easy particularly when you are on the wrong dose and need to sit it out for bloods for the endo.

It may also be worth thinking about future supplies - will you have a reliable source of NDT if you want on that. How about your source of T3 after Brexit. This may influence your choices too.

[GKeith in reply to Lalatoot]

I know, the "safest" I believe is T3-only, as long as I can hold on to a change like that. It's very hard to figure when you also have to try to see into the future which, of course, no one but God can do.

[Jazzw]

I’m not sure quite what you were thinking by adding 75mcg Levo to your T3—that’s a lot of Levo to randomly add. Starting with 25mcg would have been a much better idea.

But... Some people can’t take any amount of levothyroxine without it causing problems. You know that you’re ok on T3 only.

You could mess about with NDT but what would be the point? It would just be the beginning of yet another experiment and it sounds to me like you could do with a decent period of stability. Constantly messing about with doses is just going to make you feel terrible.

If you can get hold of T3 (is your US doctor still prescribing it?) I’d just stick with it. You don’t need T4 if you’ve got T3 in your system. Taking T3 without levothyroxine simply means that you need to make sure you don’t run out, as there won’t be any T4 in your body waiting in the wings to convert to T3.

[GKeith in reply to Jazzw]

And, that's exactly why I added the T4; I realize that it was stupid to take 75 but I was "thinking" more about the ratio of T4 to T3 on NDT & I'd really like to know if I'm converting without haveing to check the D 101 gene mutation which, if you have it, prevents T4 from converting to T3.

[tattybogle in reply to GKeith]

You have misunderstood how deiodinase works if you are thinking that a DIO 1 mutation stops you from converting T4 to T3 , it's much more subtle and than that.so the efficiency is reduced but not stopped . There is also another Deiodinase enzyme (DIO 2) that is involved in T3 .

It seems to me that you have fundamentally misunderstood something about conversion too, since you so often say 'you want to know if you are converting' even though it's simple to find out your conversion from your bloods . You take T4 only (or nothing at all)and then test the blood for FT4 and FT3.

Once you are taking NDT or T3 either alone or in combination with T4 there is no way anyone can find out about conversion. You seem to be tying yourself in knots about something that is impossible to know.

This website thyroidpatients.ca/home/sit...

has some good articles explaining how deiodinase work if you are interested .

[GKeith in reply to tattybogle]

No, I don’t believe I have misunderstood anything: if you rely upon your TSH test, for any thyroid value, and even today most do, be you a doctor or just a thyroid patient because it is affected by, among so many other factors, deiodinase enzyme mutations D101, D102 & D103: Type 1 & 2 increase cellular activity by converting T4 into T3 & D3 reduces cellular activity by converting T4 into reverse T3, an enzyme that has no thyroid activity, blocking the receptors that active T3 occupy, which, as far as I’m concerned, causes intense “thyroid storm” headaches (worse than any migraine). It is the pituitary gland, actually, that, sends the TSH signal to the thyroid, as well as causing D3 levels, which are determined by D2 activity, which is a thousand times more efficient at converting T4 into T3, and converts 80-90% of T4 into T3, even while competing with D1 to convert into reverse T3. The pituitary controls the T3 levels which will be significantly higher than anywhere else in the body and will respond quite significantly to any stress, be it from the adrenals, the liver or toxins from outside the body, etc. and you cannot ever, much less because you take T4 only be able to judge a patients symptoms or how he feels by looking at a blood test where a specific number will tell you how you should “feel.” Only you know “how you feel.”

If T3 is what actually binds to the receptors wouldn't it make sense to take T3, rather than T4? Big Pharma makes enough money selling Levothroid.

[tattybogle in reply to GKeith]

It used to be thought that rT3 blocked T3 receptors, but it's now known that Reverse T3 doesn't block the receptors that T3 occupy, it has it's own receptors on the outside of the cell, the T3 receptors are inside the cell. rT3 doesn't stop T3 getting into cells. Some thyroid websites have not updated their information to reflect this finding , so many people still repeat this as true , but it's not.

Absolutely , it would make sense to take some T3 with the T4, probably for all of us hypo's , and a very few people on here seem to do best on T3 only. if you have found this is what works for you , stick with it.

In which case you don't need to worry about conversion any more. The only way to quantify conversion is by looking at a blood test without any exogenous T3 in any form. If you add exogenous T3 you can't tell how much FT3 is from conversion (+ your own thyroid if you have one) and how much is what you swallowed.

[GKeith in reply to tattybogle]

I still have a thyroid butI don't know that there's yet a way to gauge how much tyroid hormone it's producing when taking hormones regularly & if there is the doctors & scientists have not yet figured it out. As far as converting T4 to T3, I am 75 years old and if, for example, I haven't enough Ferritin in my bloodstream it will not convert the T4 into T3. because my iron would be too low. That's just one reason the T4 doesn't convert to T3, so, you see, at 75, I know how I feel, I know many others taking T4-only and I know how many are befuddled by their T4 not converting & then not being able to even get an iron panel, for example and all because the doctor he uses is not willing to check his Ferritin because he uses the Capatation system which is paid to the dovctor the less he charges the insurance company who "owns" him.

[tattybogle in reply to GKeith]

So all this theory about conversion is one thing ,and we can all talk about that till the cows come home, but the point is, you need a plan going forwards.

So, is there a reason why you can't just take T3 alone ,, you said you were ok on that, (until you added a lot of T4 to it )

It's not clear from your post how long you had been taking T3 only or what dose you had been on during that time. But if you did not have headaches while you were doing that, it would seem logical to continue on T3 alone and give it a careful and consistent trial, monitoring your FT3 results and being aware of symptoms of overmedication to make sure you don't take too much.

There are other people on here who take T3 alone who can share their experience of doing this safely,

[GKeith in reply to tattybogle]

When they first diagnosed me as hypothyroid, in 1990, I was told two things: if it was cancer my thy-roid would be removed and I said: What if it ain’t cancer? “Oh, then you just have to take a pill every day.”

“For how long?” I asked.

“Oh, for your entire life,” the doctor replied, bringing an exuberant smile to my face but then a frown, realizing I was bound for life to a pill. He then was my GP, a Gastroenterologist, for a decade, making my appointments for every six months and barely even speaking to me, except when okaying the .88 mcg T4 prescription and shrugging off my complaints of cold hands and feet and low temperatures

I don’t have thyroid cancer, and, today, I’m going on 31 years on thyroid medication. Are the problems I have had, I now ponder, for the last three years, worth how I now feel and answer myself, with a resounding: “no way.” And the reasoning behind my thinking is the doctors. Yeah, the doctors, especially during this pandemic: they still “look” only for symptoms and then write another pill prescription. They don’t listen to how a patient feels & consequently, missed the time when I told them that I feel the best when I am eating and I’m eating tons of food but gaining no weight. I soon realized around 2018, when I still exercised regularly, 5 or 6 times a week, vigorishly that I had hyper/hypo symptoms because I had so wanted to “fix” my hypo, cold hands and feet that I overdid it and my temperatures went from cold hands & feet & lower temperatures, sometimes under 96, but then, as I got more & more T3, way higher until now it is around an average of 98.6, which sounds like my objective was accomplished but at what price? Now, I can’t say anything but this eating every chance I get, consuming three times my normal amount and gaining no weight but being totally exhausted all the time makes no sense whatsoever .

Going back two years again, when I “woke up,” in 2018, while I was in Switzerland, I began getting those insane thyroid storm headaches, and, like I said they were 10 times more than when I had a migraine or any other headaches and I still get them. It’s always a few hours after I go to sleep at night. I took, in 2018, one T4 pill of .88 mcg’s & had been since my diagnosis in 1990, of hypo. I had a craving for orange juice and after getting up, usually around 3 A.M. & drinking a large amount of O.J. the headache went away and to this day I still drink the O.J. to get rid of the headache, although it doesn’t work as well now. The endo & GP I had made nothing of it when I told them last month; they are both clueless even though I told them I think it had to do with a craving for sugar and related in some way to my hypothyroidism. problems.

So, to recap this: after a month in Switzerland and headaches the whole last week, I returned home and went to see my GP, demanding to see an endo, which he sent me to. I demanded some T3, which I had heard about from a website, this one, in the U.K. I had been taking no T4 for a week and felt better than when I took it. He put me on 50 mcg’s of T4 and 30 mcgs of T3, which I took only the T3 for a few more days then took the 50 mcg T4, which didn’t make me feel any better or worse but the headaches did go away and I experienced almost two years of good results and, after seeing my endo for a year and a half I was up to 100 mcgs of T4 and 20 of T3 when I crashed with an unforgivable headache, 45 days into the last dose. I had also had 4 infected teeth pulled during this time and blamed it on that. This was May of this year, just six months ago, and I began taking 75 T4 with 20 of T3, thinking that the 100 T4, 20 T3 was too high but it just caused more headaches until, now, I’m taking different doses, tonight 50 mcg T4 and 30 mcgs of T3, which was the next dose down that I last took after 2 months on 100 T4, one night and 75 the next and then T4 50, T3 30 for two months. I am still in that mode and if I can’t get my endo to prescribe NDT, I believe I will go on T3 only or this present prescription or nothing but food and vitamins. Crazy but true. I’m looking for Naturalist doctors right now. If anyone has any similar stories I would be more than happy to hear of them, for myself, I hate these pills and the idea that I must take a doctor’s dose until he changes it, even when it is giving me these thyroid storm headaches. Peace be upon us all during these treacherous times.

[tattybogle in reply to GKeith]

Ok, from latest answer i see this history ;

1990- hypo- T4 88mcg

2018 -headaches at night , fixed with Orange juice

1 week without T4, add T3 30mcg for few days, then add T4 50mcg

Headaches gone ,

ok for approx 18 months. ~T4 increased & T3 reduced somewhere during this time ? why ?

In May- T3 20mcg & T4 100mcg for 6 weeks. (bad teeth removed/ headache)

Next - T3 20mcg & T4 75/100 for 2 months

Now on - T3 30 mcg & T4 50 mcg for 2 months

BUT , when you wrote this post 3 days ago you mention ;

30mcg T3 alone, not clear how long for ? do you just mean you skipped T4 for a day or so.

then adding 75mcg T4 , (but in reply just now, you said you were now at 50mcg T4 ? )

you also mention 2 weeks on 75mcg T4, and at some point reducing T3 to 22.5 mcg.

So it's no wonder we're all confused....

Could you take the time to write out your dose history in a list with dates ?

I think this would help everyone give you better advice . It's very hard to understand what you've been doing and what effect it's had, from your posts so far.

But it does seem like you must be changing doses very frequently , which won't help anyone know anything.

My answer about trying T3 alone was based on the understanding that you'd tried T3 alone and were Ok on it , but it now seems you hadn't stopped T4 for more than a few days ?

We need some Clarity , and like Jazzw said earlier , you need some Stability

[GKeith in reply to tattybogle]

Tattybogle: You’re right about almost everything, basically I was hypo for 28 years and, although I still had symptoms, I “survived” on the .88 mcg’s of T4 only. Now the reason I survived was probably because I always stayed in good physical condition, working out every day despite working, as a car salesman for 10 years, in Atlanta, GA. And always during the down times I would “sneak” off and hit the YMCA or gym for an hour or more. The problems, as I’ve said, really started in 2018, in Switzerland, where I ate mostly from a sugarless diet and my .88 mcg’s of T4-only stopped “working.” Like I said I craved orange juice at night whenever headaches appeared, always at night & early mornings, and they only went away after a large glass of O.J.

Now, the reason why I am so back & forth with constantly changing the strengths of the T3 & T4 is because I was totally shocked & greatly surprised that, after 28 years on T4-alone it was totally breaking down to a, basically, unusable hormone supplement and I knew what awaited me in Florida: a GP who knew absolutely nothing about the thyroid, and neither did I at that time: I didn’t even know what T3 was, until I went on line with Health Unlocked 7 other thyroid Websites. So, anyway, when I got back, to Florida, I demanded of my GP, to see an endo. I had to google the word endocrinologist just to get familiar about who or what they were. Once I got into his office I told him I was off T4 and wanted to try T3. He told me to “listen to him and then said that he would prescribe 30 mcgs of T3 for me but I would have also to take 50 mcgs of T4 with it. I told him I was off T4 but started the first dose a few nights later and, it suited me well, especially the T3. I felt great especially compared to the T4-only and took it for about six months, when he upped me to 75 mcgs of T4 and 20 mcg’s of T3. I noticed he’d lowered the T3 by 10 mcg’s of T3 and it immediately felt worse on the lower T3 and, after conversing with many patients on this website and reading Broda Barnes, Paul Robinson, Ridha Arem, Mark Starr, James Wilson & every other thyroid book I could get my hands on, I quickly realized that this endo was running me in circles, because if he raised my T4 dose up by 25mcg’s every time (he did) and lowered the T3 dose by 10 mcg’s every time (he did) it would, automatically, end up at 125 mcg’s of T4 only, which he could have done first thing and skip the T3. He knew I had been on .88 mcgs of T4 for 28 straight years and that I still had my thyroid gland and yet, he didn’t “think” of doing that, without any use of T3 at all. I knew by this time that no doctor, GP or specialist would prescribe T3 willingly because of its cost compared to T4. This FACT totally confuses me today because of how he approached this problem. I mean from .88 mcg’s of T4 was only one T4 dose away to 125 mcg’s of T4 only?

But, even having said all this, it still hit me hard when on 100 mcgs of T4 & 20 of T3 I crashed totally and couldn’t take either the T4 or T3. I lowered it back to 75 mcgs T4 & 20mcgs of T3 but it wouldn’t anymore “work” than the 100 and 10 (I got the extra 10 mcgs of T3 on my own) and when I went even lower back to 50 mcgs of T4 & 30 mcgs of T3, it was the closest thing yet to a much slighter headache, which ended up false hope when it too, became just another thyroid storm headache for me.

[tattybogle in reply to GKeith]

So it does look like this endo's plan is to reduce T3 and increase T4 .

Not sure he's helping much, i wonder why he didn't just leave it alone at T4 50 and T3 30, if you felt better then ? (Perhaps you're right ,he just wanted to reduce the cost for the T3 ) Did you see the blood results he was using to decide on these changes ?

If you've already sourced your own T3, have you thought of ignoring him and doing what you think is best with your doses ? (and sticking with one for long enough to give it a chance )

Have you got anyone to take interest in the sugar /headache connection. seems interesting that they started after going sugar free. Not surprising you'd have a reaction to cutting out sugar , but doesn't explain why they still happen now.

(I tried going sugar free ' cold turkey' once , after a few days i ended up crawling on the floor and feeling so nauseous i couldn't even drink water. They gave me some pressed apple juice and i felt better instantly)

[GKeith in reply to tattybogle]

I actually asked him about staying on 50 mcgs of T4 and 30 of T3 but didn't realize he would raise it so quickly. At that point I was kind of puzzled but, after 28 years on T4 my brain wasn't totally working because I didn't get the connection of getting me back on T4 only; I just wished he'd have just explained it truthfully because I was open to it totally; why not? Who wouldn't want to take one pill instead of 2 or 3 and on? And when I went on 100 T4 I just wanted to find out if the T4 would actually as good as the T3 did? I found out the T4 was no good for me, just wish it was the other way around and sooner because the 100, I thought, might work, I still can't believe they worked for so long, almost 2 years & then they stopped "working." I real still can't figure it out. All I know is the T3 at 30, 10mcgs three times a day works with no headaches (so far so good. The sugar in Switzerland was nil but only because, unlike Florida, the Swiss purposely use it in their cooking and so aren't used to it. Funny think, I used to eat gobs of sugar but after cutting it down I now don't like as much. I never thought I'd feel this way but too much sugar taste worse than to little to me now.

[tattybogle in reply to GKeith]

Well i'm really pleased you are still free of the headaches, And hope it stays that way . Figuring this stuff out and dealing with doctors pulling the strings is a big enough headache , without having to deal with an actual headache as well.

best wishes

Tat

[GKeith in reply to tattybogle]

Back at you. Big Pharma is killing people left & right; I only pray I can lead myself back to as healthy a life, as possible, without throwing so many pills down my throat because it's the doctors "orders." Peace be upon you.

[Jazzw in reply to GKeith]

Completely agree with tattybogle - you’re never going to be able to work it out like that.

The only way to work out whether you convert well (you’ll always convert some) is to only take levothyroxine, slowly work up to the highest dose you can without going over-range, optimising vitamins and minerals to maximise conversion and then sticking at that dosage for a good while before testing again to see how much FT3 you’re making. That’s a process that would take at least 6 months, possibly longer, all the while not feeling particularly well (or if you do start to feel better, not until nearer the end of that 6 months.

Or... you could stick with your 30mcg of liothyronine daily and get on with life.

Both ways forward are valid. But you can’t work out anything about conversion if you take any amount of liothyronine.

Stop worrying about getting the proportions of T3 and T4 exactly right for you—you’ve got a bigger problem to solve. You need some stability.

[GKeith in reply to Jazzw]

Jazzw: Thanks for your time and reply and, yes I’m going to stay on 30 mcgs of T3 only and will probably end up, by dosing myself, paying for the extra T3 pills, on 40 or 50 because of the realities of this world and the fact that, here in Florida, almost all doctors use a capitation system which actually pays them more money the less work they do, especially prescribing T4 over T3.

Big Pharma has actually, literally, changed the medical textbooks in most medical schools, in Florida, to read (and teach) that when considering thyroid issues T4 Levothyroxine takes precedence totally, over T3 Liothyronine. Hard to believe but true. Thanks to both of you for using your hearts & souls to speak the truth when it is so much easier (& less time) to do the other. May peace be upon us all in these pandemic times.