An experiment: Ok nobody tell me off...after a... - Thyroid UK

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An experiment

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Ok nobody tell me off...after a month taking vitamins ( b complex, magnesium, selenium, vit c, probiotics) and 2 weeks on iodine, I decided to give the t3 a trial. So I have for the last 3 days. I have definitely more energy and feel much more awake! However I am concerned whether I should continue or not because I have had headaches and have read that t3 can cause muscle breakdown. I have taken one 25mcg tab a day, split in 3. I'm confused because it seems to be helping, but I don't know if it's just going to make everything worse long term... I'm pretty sure taking t4 is quite pointless for me because my t4 level is ok - 11.5 (9.00 - 19.00). Or is that too low? I am totally lost now. I just want to feel better and everytime I do it seems there is something wrong with my plans :(

Thanks if anyone can shed any light. Xx

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galathea profile image
galathea

Well, for starters that t4 level was too low. It has to be at the top end, or just over the range, in order to convert into t3. No one is going to tell you off for wanting to feel better and sometimes we need to experiment to see what it takes.

First time I have heard about t3 and muscle break down. I certainly have had no problems with this. The headache might be co incidental.... It might be because you are stressed about taking the meds, or it may be the t3 doesn't agree. Trick is not to change too many things at once. Just change one thing, stick with it for a week or so and re assess.

You could try stopping the t3 and Increasing the t4, in the hope that more will help you convert, or you could just stay with the t3 and maybe stop the iodine for a week or so....

There are no hard and fast rules to all this. Just take it slowly. Might be worth tracking your temps to see how you are doing.? Www.drrind.com.

Xx. G

in reply to galathea

Thanks! And especially for your understanding :) I guess I am being impatient and illogical as usual.

Clutter profile image
Clutter

SuperParrot, try 12.5mcg T3 for a couple of weeks and increase in 6.25mcg increments if you need more. It's a bit heavy going starting on 25mcg which is equivalent to 75mcg Levothyroxine.

Not heard about T3 causing muscle breakdown either.

in reply to Clutter

That's weird, it seems to be everywhere - "t3 breaks down muscle, t3 reduces bone density, t3 makes you sick..." blah. Perhaps they're just talking about if you take too much? Maybe I'll take it a bit slower! Ha ha I thought I was having seen people on here taking 60-100mcg, but I forget they're somewhat more advanced than me ;)

Thanks for your help xx

Clutter profile image
Clutter in reply to

Superparrot, thyroidectomy patients would start on 60mcg and anyone taking more than 60mcg probably has little or no thyroid function and will have built up dose gradually over several months.

Clutter profile image
Clutter in reply to

Superparrot, have a look at this link about adjusting dose when starting thyroid hormone thyrophoenix.com/adjusting_...

in reply to Clutter

Thank you clutter, that is very helpful xx

superparrot,

Well done for taking responsibility for your own health and being so proactive.

I am pleased it appears to going so well for you but remember it is early days yet and hormone imbalances can take a while to settle.

Treat with respect and you will be rewarded,

Good luck, flower007

in reply to

Thank you! Encouraging :)

faith63 profile image
faith63

Personally, as you have been under nourished for 4 years and are now starting to take better care of yourself, but do not eat meat, it is very possible this low thyroid symptom thing is temporary, due to malnutrition. Your body will go, is in into starvation mode and you will make large amounts of thyroid blocking reverse t3, as a self protective mechanism. You have been on supps for a month, have not had tests to determine what nutrients you are deficient in or what your complete thyroid panel looks like.. It took me 6 months to get my iron and vitamin d up to midrange. I tested low and you are expecting it all to be ok in 4 weeks. You do realize that taking thyroid hormone when malnourished and not needed, can be dangerous to your heart, especially t3..maybe your heart has suffered damage, from loss of nutrients or is weak. T3 is a direct blast of hormone. You are suppressing your own supply by taking t3. I think you are playing with fire and appear to still be attempting, thru the use of t3, to lose weight. I am concerned for you and something clearly is not right in your thinking with this. I am sorry for being so blunt.

in reply to faith63

I am not offended at all, it is very kind of you to be concerned. I realize a month is not long enough for vitamins, however my iron levels are actually high in range :) I was surprised too. I am a bit stuck what to do as weight is really the least of my problems right now - it was the lethargy, the whole body pain and the incapacitating water retention that made me want to take t3. After all the research it seemed the only option as so many people were saying t4 didn't work for them. I am really not doing this to try and lose weight...I just want to be able to function. But I am still not sure whether I'm doing the right thing, so all ideas and opinions are much much appreciated. if there's any way of going without t3 and functioning, I would be very eager to know xx

greygoose profile image
greygoose in reply to

People who say T4 doesn't work with them, have at least taken a decent dose of it for a reasonable length of time.

Your T4 was much too low on your dose - whatever it was - you needed an increase in dose. I think with all this chopping and changing, you've totally confused your poor body. It doesn't know if it's coming or going.

Being veggie, your B12 is going to be really low, and a B complex won't do much to help that.

Why not - just a suggestion - go back to a higher dose of T4, add in some B12 - about 5000, you can't over-dose - and leave things like that for at least six weeks?

How is your vit D? If you're taking magnesium, you might be lowering your vit D. Did you test deficient for iodine? If not, it's not really good to be taking it. You're going to get iodine from your T4, anyway.

Or, do as Faith suggested : assume that your hypothyroidism is temporary due to malnutrition and come off all hormone while you improve your nutritional status. Get your levels of Bs and magnesium etc up, and then test your thyroid again.

But whatever you do, you've got to stick with it for a couple of months. Otherwise you're not going to get anywhere.

in reply to greygoose

I was never prescribed t4 as the doctors didn't think I needed it (persuasion went nowhere). After looking it up I found t3 seemed to agree with most people better, so...

I don't know about vit d, I do take magnesium though so that could affect it.

Why wouldn't supplements help with b vits, out of curiosity?

I would wait it out, but as I say it has been becoming impossible to function. Since the t3 I have managed to walk everyday because I actually wanted to, cook some real food and focus for over 5 minutes, which I simply couldn't do before :(

I really don't want to go back there again but if that is more sensible I guess I should...?

greygoose profile image
greygoose in reply to

You're getting me really confused now! lol l've just been back and read your first post, you Don't give your blood test results, so do you know what they were?

You said in that post that hypo can be a symptom of recovery from anorexia, so why didn't you just wait it out and get your nutritional levels up?

So you never took any T4? I thought the FT4 result above was after you'd been on T4 for a while...

T3 is good, and the best thing for some people. But to jump straight into 25 mcg after not having taken any thyroid hormone before, was just too much of a shock for your body. These things have to be done very, very slowly. T4 would have been easier on your body to start with.

It would be a good idea to get your vit D tested, if you can.

I didn't say supplements wouldn't help with B vits. I said a B complex wouldn't help raise your B12 if it was very low, because there wouldn't be enough B12 in a complex. You would need to take some B12 on top of the B complex.

OK, so as you're already on the T3, stay on it, but drastically lower your dose - 6.25 perhaps? - and stay on that for a couple of weeks before increasing by another 6.25. But take your time! :)

in reply to greygoose

Sorry for the confusion! My blood test post must have got buried... it was there :)

I did wait it out, for ages - I have been in full recovery for over a year now, and after the first few months I began taking multivits and eating enormous quantities of healthy food as well as the enormous quantities of less healthy food that are necessary to begin with. I wasn't surprised that I was feeling wiped at that point, it was actually only in the last 3 months that I started feeling really bad. It just felt like something had changed for the worse. Really quite suddenly. Then I stumbled over hypothyroid while I was trying to find out what was wrong with me and that was that. I started taking more relevant supplements but it just seemed to get worse at the same rate. Hence why I became a little desperate!

greygoose profile image
greygoose in reply to

OK, I understand.

Well, what's important now is getting you back on track. So, as I said before, reduce the T3 and continue with the vitamins. But I would lose the iodine, if I were you.

greygoose profile image
greygoose in reply to greygoose

Just found the results. You posted them four days ago? I was expecting them in the first post. So, your TSH was a bit high, and your FT4 was a bit low. And, of course, so your your doctor thought they were all 'fine' because they were in range!!! Usual story. Pity you didn't have the FT3 tested, that would have given a clearer picture. And they didn't do anitbodies? I really think you ought to go all out to get the anitbodies tested - TPOab and Tgab. Then we'd really know what we're dealing with. But your results were bad enough to make you feel bad, I'm sure. So the next question would be : is it just temporary due to the anorexia, or is it really gland faillure? And that's where the antibodies would be of help.

in reply to greygoose

Didn't I post antibodies? Whoops. I have the peroxidase antibodies, <35 (<60) or is there other ones? I can neverget them to do what I need, Iit's hopeless. They won't even discuss it! It's maddening. I reduced the t3 today, feel way tired again but that might just be because I had to walk alot yesterday between things.

greygoose profile image
greygoose in reply to

So, there you have the TPOab, and that's negarive. But they didn't do the second one for Hashi's, which is Tgab. For some reason, they never seem to think that that one counts, but it does. Some people have high TPO but others have high Tg. Both of mine were high. But if anything is high, you have Hashi's. The UK is a pretty bad place to get your thyroid tested!

in reply to greygoose

Oh it's useless. They seem to want to try and make health as difficult as possible! So do I need to get the tg tested?

greygoose profile image
greygoose in reply to

Well, it's not vitally important, but it might just explain things more clearly.

in reply to greygoose

Now not sure if I should take t3 at all after reading this:tiredthyroid.com/rt3-8.html

I am SO confused

greygoose profile image
greygoose in reply to

Hmm well, that's rather sensationalist, isn't it. And possibly designed to put you off taking T3 only! But if you can't tolerate T4, what choice do you have?

Besides, they give no indication of what they mean by 'high levels'!

A lot of people do very well on T3 only. And to suggest that you're going to die or something if you run out and miss a dose, is just unrealistic. I went for six months without my dose, and my good old gland stepped up and put out what hormone it could, although it's very near to death, poor thing. My TSH went up to 35 and I put on about 20 kilos, but apart from that, I was fine.

However, it's perfectly normal that you're confused - we all are to some extent! So, how about stopping the T3, but carrying on with the nutritional suppléments, until you get your head together and can decide what to do next. Just calm down, breath deeply, and see how it goes. That's the best any of us can do if we can't get the blood tests we need. We have to play it by ear. But, the fact that you have that T3 next to you, knowing that you can go back to taking it any time you want, will give you the courage to stop and take stock of your situation. Learn to get Inside your body and let it tell you what it needs. Then, you can make an informed, calm decision - because I get the feeling that you're panicking a bit here! :)

in reply to greygoose

Thank you greygoose, you're right I was panicking ;) I think that sounds like a good idea, all of it. Thank goodness for sane people. You are very kind.

greygoose profile image
greygoose in reply to

No problem, SP! If I can help I'm glad to do it. Let us know how you get on. :)

Superparrot,

T3 doesn't cause muscle wastage but is required in preventing it.

Our muscles are one of several major targets for thyroid hormones to do their job, especially those which are used for prolonged effort (your slow-twitch muscles). T3 taken from your blood is actively transported into those very muscles.

I only take just Levothyroxine at present and believe I have experienced a definite lessening of my muscular strength. I also feel drunk within minutes of any aerobic activity. I am at present looking into adding T3 to my T4 medication under medical supervision.

Superparrot, it is imperative to be observant when introducing new meds and

you might benefit from doing a wellness chart everyday so if you hit any lows you will have a record of it to analyse. Remember new meds can give you an initial high so be wary.

Good luck,

Flower007

in reply to

Thanks flower, those are good ideas. I am generally rather phobic of medication anyway, so I tend to be very wary... I hope you reach an equilibrium soon xx

greygoose profile image
greygoose in reply to

You aren't taking any medication in the strict sense of the term, you're taking nutrients and hormones - things the body needs to survive and which you're low on. It's all a question of attitude. :)

in reply to greygoose

That is true... it's not like relying on paracetamol for the rest of your life! ;)

greygoose profile image
greygoose in reply to

Which you possibly would be if you didn't take the hormone.

in reply to greygoose

Good point! !! Does the pain and swelling ever go away? I ache every time I do anything! :(

greygoose profile image
greygoose in reply to

Well, it certainly gets less, in any case, when your hormones are balanced and your nutrients are optimal.

My pain all disappeared practically over-night when I added zinc to my cocktail of suppléments. So, obviously it was zinc that was missing for me. And I was able to come off the 4+ daily Ibuprofen that's I'd taken for the past 10+ years. But no doctor would ever think of such a thing. They'd rather give you pain-killers!

in reply to greygoose

Well that is good news! Perhaps I should get some zinc too. I thought I'd get enough of that because I eat so much cheese! (Goat's not cows).

greygoose profile image
greygoose in reply to

Yes, but it's not just a question of how much you eat, but how much you absorb. I have a lot of problems with absorption. That might or might not be your case. As you're taking magnesium, it might be an idea to try it - magnesium, vit D3 and zinc all work together. BUT keep a close eye on your reactions. Knowing your body and how it reacts is the key to all this.

in reply to greygoose

Sounds like a plan :) if only we could see how much we were absorbing!

greygoose profile image
greygoose in reply to

Well, that's what blood tests are for. :)

faith63 profile image
faith63 in reply to

We can tell often about absorption, by how muscle and organs test. Dr. Lowe tested thyroid hormone absorption and dosages by testing the heart, resting metabolic rate, reflexes and something else.

in reply to faith63

That's very interesting :)

faith63 profile image
faith63 in reply to

If the dose of t3 is too high..yes it causes muscle wasting by lowering your creatnine level. Been there, done that.

in reply to faith63

Hmm. My creatinine level was already low too...why is it all so contradictory and problematic...urgh

faith63 profile image
faith63 in reply to

This is another reason to further investigate what is going on. I think your body has not recovered from the years of improper nourishment. Being Hypothyroid typically causes a high creatnine level.

I think someone has put a curse on us or something!!!

in reply to faith63

Yes, think it is a conspiracy! ;)

I wonder why the low creatinine level then? How weird.

Please get some bloods done before continuing down this path.

in reply to

I did have bloods done ;) my doctors refuse to go into details as soon as they see I'm 'normalish'. Taking matters into your own hands is not comfortable, but I don't know what else to do.

faith63 profile image
faith63 in reply to

If this is a temporary condition and you start thyroid hormone, you will be dependent forever, possibly. I would give anything to have my own working thyroid and not have this horrible illness. It is possible that the Anorexia triggered Hashimotos Disease. Can you get the tests thru Blue Horizons without a prescription? You need to know what you are dealing with ASAP.

in reply to faith63

You mean further antibodies tests? What is it called, if you know?

Honestly, I had looked up t3 and read that it wouldn't do you any harm if you didn't need it and you could stop taking it and go back to normal. I think it was Dr C Lowe who said it. I really don't know what to think now, I very much respect your knowledge so I am taking it seriously.

I am so sorry for your situation, this whole thing is a nightmare. I am sure you think I am crazy and have my priorities wrong, but I really have been just trying to do the right things to get healthy.

I am sat right on the fence now. I am wondering whether I should carry on with this at all but I don't know how I'll manage life if I don't. If only divine intervention would give us our answers! :(

faith63 profile image
faith63 in reply to

Hang in there..don't give up. I don't think you are crazy at all. We are both scared and desperate, i do understand.

Dr. Lowe was right, but i do worry about your heart and possible damage from malnutrition.

I am sorry. You had thyroid antibodies done? Both tests and they are negative? If so, surely this may be temporary, i hope. That would be so nice.

We need our prayers answered for sure. I hate doctors.

in reply to faith63

Thank you :)

I am hanging :)

I had the tpo antibodies done and it was well below the limit. I don't know about the other one because they didn't do it...I hate doctors as well right now!

They did an ECG on my heart a couple months ago, they said it was fine as could be. I wasn't sure how accurate that was though. I guess there shouldn't be anything mechanically wrong with it, but I definitely wouldn't go for a run! It could easily be weakened anyway.

in reply to

Can you get a copy of our 'normal' results

in reply to

Sorry, I'm not sure what you mean by 'normal'? I posted my result in a post called "Results are in!"

But I don't know if that's what you meant?

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