Okay, I never expected this to happen to me and can't figure out the reason, or the cure. First, I'm, at present prescribed 50 mcg Levo and 30 mcg T3. The T4, Levothroid, was something that I first quit taking and ended up on 50mcg of Levo and 30 mcg T3, both happenings of which I have posted, (over several months) on this site. So, to sum up my past on this Hypo journey so far: I've 26 years on T4 only, with no problems. Then I crashed in Europe while on vacation with my wife, bizarre headaches, near fainting, waking up at 3 A.M only to drink O.J on an insane craving for it (sugar). So, I totally threw out the T4, as I was taking nothing else. I came back to the States and got an endo, who, seeing I was (not) taking my .88 mcg of Levo, lowered it to 75 mcg, which I took three times before quitting and requesting T3. He eventually put me on 5mcg of T3 and 50 mcg of levo. He kept me on this dose until I got to 30 mcg T3, where I felt good. After 6 months, I saw the T4 appeared to be converting well enough to (try) to up my dose to 75mcg, the same dose he had put me on a few months before, which I had quit after 3 tries. He then says he will put me (back) on 75mcg if I lower my T3 from 30 to 20 mcg's. Wha ….ah … uht? Yeah. Anyway, to shorten this up, I still had the 75 mcg bottle I had not taken and dosed myself to it; up from the 50mcg. This was app. 2 weeks ago. Now, I'm feeling very good: only very slight, once in awhile, headaches but very 'normal'. So, what happens? I am reconfiguring taking my T3 in more doses because I'm reading Paul Robinson's, Recovering with T3.
Now, I fully realize everyone is different but all I did was so small I didn't expect a reaction. I had been taking my pills as following: first I took all 30 mcg at midnight in one dose and got a slight reaction of slight palpitations, so I went to 20 mcg of T3, even slighter but still palps so I went to 15, at midnight, ten at 3 or 4 or 5 a.m, whenever I woke up, then 5mcg at noon, when I did a bit of exercise. It was good, no problems but after reading Robinson's book I decided to dose more times, with smaller doses: I began taking 15 @ midnight and 10 mcg, 3-5 hours in the A.M., then the last 5mcg at noon, during a bit of exercise.
That was good and I should have left it at that but then I started separating the doses into 4 or 5 doses: midnight, 3:00; 5:00, 8:OO A.M and then @ noon. It, for some reason, backfired. Everything was fine when I took my first dose, at midnight: one 75 mcg T4 and one 10 mcg of T3, down from 15. No problem, I awoke, again, at 3 AM, and took one 5mcg of T3, down from 10 and then another 5mcg at 6 AM. The I took one at noon and had no problems. It was at 2:00 PM, 2 hours after taking the last small dose, of 5mcg of T3 that I ate a tuna fish sandwich, some pretzels, a few browned slices of potatoes and drank some iced tea. I was planning to take anoth 5mcg, the last one, at 6:00 P.M. But that's when IT happened: My hands, both of them, from their bottoms to their tops began tingling, even as they went from normal-colored hands to totally white as a sheet, with a yellowish hue to them. This had happened once before when I was having extremely low blood sugar attacks, or so it had seemed at the time I had thought I had had hypoglycemia that time, as a friend also had it, but it had quickly disappeared. Now, I am sitting here feeling really good but it took an hour to feel well again. I drenched both hands with nearly scalding water, then adjusted the tap and let it soak my hands off and on for at least an hour before the tingling totally disappeared. These cold hands have become a barometer for me because as much as I hate it, I now feel it is my measurement of when my symptoms will, finally, disappear. These cold hands and feet are definitely controlled by my thyroid and there's nothing I'd rather see then these cold hands (& feet) to disappear. Does anyone have (or had) anything even remotely similar happening to them?
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GKeith
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Your experience with your hands sounds like Reynaud's syndrome - which can be primary or secondary, auto-immune or non-autoimmune - and it definitely isn't a good idea to "drench them in near boiling water"! That you have little or no sensation of that, doesn't mean it isn't harming you. sruk.co.uk/raynauds/what-ra...
I'd also say that you are taking your doses of T3 too often/frequently. If you are following Paul Robinson, you may like to join the FB group that was set up when he closed his; which is T3 Support, and ask for guidance on your dosing.
I checked on Reynaud's Syndrome: apparently they haven't got much of a clue about what causes it. I'm taking the T3 now in 3 doses, midnight, 4 or 5 AM and noon. Thanks for your reply.
I dont know much about it, but this sounds like a pretty low B12, and worth trying to correct. Around 500 is the point where neurological problems can occur.
If you're taking a daily dose it will skew your results, and the true value will be a bit lower than the test (unfortunately this is unavoidable once you start supplementing, as the wait to clear it out is long).
But it's likely what you're doing isn't enough to raise your levels. Look up the advice SeasideSusie gives to people with similar levels to yours. You need to make sure you're taking the more bio available form in a useful dose. I think that's methylcobalamin, but I may have got that mixed up. Ideally you want the kind that dissolve under your tongue to bypass the stomach. You also need a good B Complex at the same time, to keep the Bs in balance.
Once you've got a deficiency a multi vitamin and many of the most readily available vitamin tablets aren't much help. They will contain the cheapest forms, which are often not great, and doses that won't change your levels.
What lead you to think you were converting ok? Unless I've not got it right then once you are taking T3 then the only correct accurate thing you can do is FT3 and TSH, if on the right dose will be suppressed and the FT4 can go lower in its range so therefore you can't get a conversion issue sorted when you have nothing other than the FT3 which is reliable.
Waking around 3 am I've read can be an adrenal issue but I know nothing about that.
The adrenals apparently have a window of 4 hours before you awaken where they make the majority of the cortisol needed to keep them healthy and functioning in your system and so, I normally take my first dose between midnight and four AM, even though I don't awaken until 9 or 10 AM, usually. I do this because I take the 2nd dose anywhere from 4-5 AM and a small dose at noon. As far as the T3 being "reliable" I would much rather take only T4 and have it converted to T3 but it looks as if it has stopped doing that without some help from T3. I would like to try NDT & am presently trying to figure out what dose I should take if and when I can get someone to prescribe it.
You've had a few people meant on specific things it could be, but another explanation is just that almost anything can happen when you change doses.
I've been adjusting my doses for over 3 years, I now split mine into 3, morning, afternoon and evening, but have adjusted many times over the years.
I've found that in the first few weeks after an increase, decrease, or change in dose structure, anything can happen. My pulse and temperature goes pretty haywire, sometimes I've felt very overmedicated, other times very undermedicated. I've had strange temperature effects in different parts of my body, including a couple of times of very warm and tingling hands and forearms, and a few other strange sensations.
Along these lines, my advice would be to wait a few weeks and see what happens. If it never happens again it doesn't really matter what it was. If it starts happening regularly then you may want to get to the bottom of it, and will hopefully pick up a few more clues. I've had a handful of things I've got ongoing, including distinctive pin prick marks on my nails I've had for 4 years, that no patient or specialist has ever recognized. When I showed them to Dr Peatfield he sagely said " You've been on the wrong dose for a very long time", and that was the answer I got! It's possible you'll never know!
I realize anything can happen when you change doses; the problem is my endo won't so I have to. BTW what are you on T3 only or T4-T3 or NDT? I plan to do everything I can to find out what my problem & this forum has been a great help. The doctors, endos included, don't want to do very much and I get the feeling that they are in a hurry and won't give you time to even speak. They glance at the bloods, which my endo only checks TSH, FT3 & FT4, and dismiss you. I am desperately trying to figure out, now that my T4 appears to be converting, how much I can drop or add of the T3 or the T4 and how much it is and/or will convert?
This is mainly an answer to the question about cold hands.
I started off with NDT only, but after a few years of increasing have now started swapping out some of the NDT for T3.
It's a long, slow process of experimentation. In some ways anything goes as long as you move slowly, do things systematically, and have a good reason to take each step. The only way you know how much T3 and/ or T4 you need is to slowly try it out.
It's also important to remember that T4, T3 and NDT are added together for your total dose of hormone. Don't think of them as 2 completely different medicines. Your description is a bit hard to follow because sometimes I think you're talking about the change in T4 dose when you're also taking some T3. If a person converts fine and is otherwise processing the hormone perfectly, T4 and T3 are completely interchangeable, with T3 about 3-5 times as potent as T4 (so 10mcg of T3 is equivalent of about 40mcg of T4). T3 becomes more necessary when a person just doesn't feel well on any dose of T4. Although many people will feel better with at least a little bit of T3 in the mix.
If a person was starting from scratch I'd recommend they start with T4-only, and tune their dose till blood tests look perfect and symptoms are as good as they can get them. For most people this will be with freeT4 very high in range or just over range, ignoring TSH which may be suppressed.
Then, if they've still got substantial symptoms, to move onto T4 and T3 combination. Keep the total amount of hormone roughly equivalent, but change out a little T4 for T3 at each dose adjustment, in 5mcg or 10mcg of T3 increments. At this point it's important to make sure vitamins are optimal, too. Being hypothyroid causes vitamin deficiencies, but low vitamins prevent thyroid hormone from working optimally, too.
Sounds like you've already tried out T4 fully, and are at the point of swapping in the T3. If you're feeling very good where you are, it might be that you want to stick there for a while and work on vitamins instead. Maybe come back and tune more once vitamins are perfect.
I'm feeling pretty good considering I have an endo who prescribed me 50 mcg of T4 and 30 of T3 and then, when I told him I wanted to raise the T4 to 75 mcg said "only if I lower the T3 to 20 mcg? i FIGURED IF THE t3 WAS RIGHT WITH 50MCG OF t4 WHY WOULD i LOWER THE t3, IF i WENT UP TO 75 mcg of T4? It's already working with 30mcg of T3?
As far as vit's go I'm very skeptical about them because if you take too much esp. Calcium or iron, the thyroid pills react strongly against them, at least with me. That's why I prefer to take the thyroid meds all in the late night or early morning hours before I get up.
I take some multivitamins after breakfast but vitamins should be gotten in the food you eat and too much or too little is very hard to find. And the brands are always a threat to be interferring with your thyroid meds and, of course, they also expensive. So, I usually am very cautious about any supplementation. Everybody's always seems to have their own brand, even though the same vits, like thyroid hormones, will not work the same for everybody.
Hope you had a Merry Christmas and Happy New Year & may God's peace, mercy and grace be upon you & yours.
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