Thinking of attempting levo: Okay I'm thinking of... - Thyroid UK

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Thinking of attempting levo

28 Replies

Okay I'm thinking of trying out levo, I've never taken it before, I've only ever taken T3. My ferritin, folate and b12 are ok but not exactly optimal, does this contraindicate taking T4 in anyway? Obviously I'm working on those things, I just don't want to take a step backwards by taking the wrong thing at the wrong time.

My only other concern is: my TSH dropped from 2.6 to 1.38 in the last few months, with taking miniscule amounts of t3 every now and again and I don't want to undo that progress, but none of my actual symptoms have been relieved in anyway and I feel it would be worth testing out t4 given I had slightly lowish levels before.

Oh and I have heard people get worse/gain weight/have issues with t4. Anything I can do to prevent that?

And if all goes to plan can somebody PM me with a reliable T4 source? My doctors refuse to give me anything other than paracetamol and reassuring nonsense that my blood tests are "perfectly normal"...

Ciao and thanks muchly :)

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28 Replies
Jazzw profile image
Jazzw

Superparrot, if you've only taken T3 in minuscule doses every now and again, you won't actually have made any progress. It doesn't fix the thyroid, it simply replaces the hormone it should be producing.

Think of it like the contraceptive pill - if a woman of child bearing age took it now and again, in minuscule doses, would you expect it to prevent pregnancy?

It does appear that your thyroid is failing, though without knowing more, it's hard to say whether it's reversible. It might be you had thyroiditis. It might be that you're slightly anaemic. It might be that you have antibodies systematically attacking your thyroid. If it's the latter, it will get worse over time and it's worth starting to treat.

Personally - and of course, this isn't medical advice - I'd want to be consistent with my dose of thyroid hormone, whether that be T3 or T4, to see what effect it has if taken regularly at a steady dose.

in reply to Jazzw

Thanks Jazzw, that makes sense :)

The reason I was so inconsistent with it was when I first took T3 in higher doses (like half a 25mcg a day) I got these awful migraines by day 2 and they just got worse and worse…I realise now that it was because my b vitamins were probably really low. I started taking b vitamins and loads of other things too, and I can tell I'm feeling better for it, so I was trying to increase T3 slowly, but then I became somewhat uncertain about the whole thing as I knew my b vits etc are still not optimal, sooo…

My antibodies were way below the 'normal' range when they were tested…I can't find the exact number but it seemed to be okay. I don't really have the symptoms of hashis, and I've never had any kind of automimmune type reactions, I don't have any allergies…but I do avoid gluten and grains mostly anyway, my diet is pretty much super foods at every meal lol.

I think you're right on the money with anaemia and stuff though.

Basically I think I need to start this whole process all over again :)

Thanks for your input :)

greygoose profile image
greygoose

If I were you, before doing anything else, I would get my vits and mins optimised. T4 won't do any good - and could make you worse - if they aren't optimised.

Do you have the results for ferrritin, folate and B12 so that you know how much to take? If you have, why Don't you post them on here? Then people could better help you. :)

in reply to greygoose

My b12 is 565 (180-900) folate 8.6 (3-20) ferritin 36.5 (10-200) iron 25 (11-30).

I know that's not really ok, lol.

I take a b complex that has 100% RDA in each tablet and I take about 3 of those every day. I eat loads and loads of vegetables that have folate in them and I've just started back on my iron bisglycinate every other day. I mean, my iron's fine, but I guess if I take a bit more I might store a bit more right?

I also take zinc, magnesium/mineral complex, vitamin C, probiotics, saccharomyces boulardii, some herby things like milk thistle and stuff

And can I just clarify - so T4 and T3 use up minerals and vitamins? And exercise uses up T3, does it use up T4? How long does it take exactly to build up enough vitamins etc? THANK YOU :) I am easily confused...

greygoose profile image
greygoose in reply to

OK, so if you're taking three times the RDA of the Bs, I wouldn't Knock myself out with the leafy veggies. Remember that most of them will probably be goitrogens, and over-indulging in those could cause problems - moderation in all things! You probably can't absorb the folate in them, anyway.

But does your B complex contain methylfolate, or folic acid? Folic acid is not a good idea for everyone.

I think, personally, I would want to take some sublingual methylcobalamte just to make sure I was getting more B12 into me.

The important measurement is the ferritin, the stored iron. The body takes what it needs into the blood (serum iron) and puts any extra into the ferritin. Your ferritin is much too low. Why Don't you take the iron bisglycinate every day, and get it up as quickly as possible? Are you taking enough vit C?

So, what exactly is in your magnesium/mineral complex? There might be things you Don't want, like calcium and iodine.

Do you have Hashi's? Because I just found this :

"However, in immunocompromised individuals, S. boulardii has been associated with (fungemia) or localized infection, which may be fatal.[5]"

en.wikipedia.org/wiki/Sacch...

I'd never heard of Saccharomyces boulardii before, so I went looking for it. Don't think I'll be taking it. lol Certainly not long-term.

No, T4 and T3 Don't use up vitamins and minerals. But you need optimal vitamins and minerals to be able to convert T4 to T3, and be able to absorb them.

And exercise does use up T3, certainly. It only uses up T4 indirectly, because more T4 has to be converted to T3 to make up the difference. Which is why, if you are a bad converter, or not on enough T4, you can become very hypo with too much exercise.

I couldn't possibly tell you how long it takes to build up vit and min levels. That would be highly individual and depend on so many factors. :)

in reply to greygoose

gg,

I think wiki is referring to people with AIDS, or after having chemo, or medicating immunosuppressive drugs post organ transplant.

I take Saccharomyces boulardii as a probiotic for gut issues and it is very good.

Isabella Wentz, Hypothyroidmom and Dr Hedberg (among many others) all advocate Saccharomyces boulardii for gut dyobolsis caused by Hashimotos and low thyroid hormones.

Flower

thyroidpharmacist.com/artic...

hypothyroidmom.com/hashimot...

drhedberg.com/hashimotos-th...

greygoose profile image
greygoose in reply to

Ah, OK. :)

in reply to greygoose

Yikes! I've never heard that about s. Boulardii. I would guess you'd have to be VERY immunocompromised for that to happen because I was recommended it by someone who had an autoimmune skin condition, candida and bronchitis all at the same time! But that is definitely somewhat concerning so better safe than sorry.

I take something called mega mag from trace minerals, it's liquid from a salt lake and is mostly magnesium with tiny trace amounts of lots of other minerals. It doesn't mention calcium or iodine. its really good stuff actually, much better than the tablets because it doesn't have all the fillers.

B complex: yes contains folic acid, can't find one that doesn't? Is it that bad?

I'll take more iron and vit c for sure. Thank you for making it clear about the exercise/vitamins/T3/4 thing. And for everything, very very helpful thanks :)

greygoose profile image
greygoose in reply to

Folic acid is that bad for some people, yes. But the methylfolate is better absorbed.

There are some B complexes that have methyfolate, I'll see if I can find some links for you.

Sorry about the confusion over the s. Boulardii. I've just never heard of it before. :)

in reply to greygoose

That's okay, no worries :) I'm just appalled nobody warns anyone about it, that seems crazy!

How kind of you to find those links, much appreciated, thanks!

greygoose profile image
greygoose in reply to

This is one B complex with the methyls :

eu.iherb.com/Thorne-Researc...

This is another :

pureencapsulations.com/prod...

:)

in reply to greygoose

Thanks so much!! Sorry I didn't reply sooner, ive been away for a week. Cheers :)

greygoose profile image
greygoose in reply to

No problem, SP. Hope you had a lovely week. :)

shaws profile image
shawsAdministrator

You might not be on sufficient T3. Your TSH is fine at 1.38 and can go lower - don't believe the scare stories about T3 and T4 (levothyroxine) has to convert to T3 anyway. Some don't convert properly.

web.archive.org/web/2010103...

Always keep an eye on your temp/pulse when increasing T3. As suggested by other members make sure vits/minerals are good too.

in reply to shaws

Thanks shaws, much appreciated advice. I just guessed if I'd never tried t4 then I probably should in case it was just what I needed, lol. We'll just have to see I suppose :)

faith63 profile image
faith63 in reply to

You can't use things "in case it is needed"..you need some testing.

in reply to faith63

I have been to several different doctors and they all refuse to take tests other than t4 and tsh levels because according to them the other ones are "totally unnecessary". I basically have no money at the moment or I would have ordered a self test...hence I'm having to go by just how I feel at the moment...I know it's far from ideal.

Gismo333 profile image
Gismo333

What you have to remember T4 has to convert to T3 and if it doesn't convert in the liver it just sits in the blood. I would take it easy with T4 but I have no idea how much T3 you are taking.

TSH is always suppressed when taking T3 so it's nothing to worry about. In fact, in my opinion and my doctor abroad, the bloods are a guide, it's symptoms that count.

Pulse before waking, muscle response etc. I don't know anyone who has got well going by the bloods.

Find a good doctor from the Thyroid UK list, Dr Peatfield is good in my opinion, and go forward from there.

in reply to Gismo333

Thanks gizmo333, I was actually quite pleased to see my TSH go down as I gather it's meant to be as low as possible...?

I haven't been at all consistent with the t3, hopefully that hasn't just made things worse - but it looks like I need to get more nutrients in before taking anything else it seems. When I do I will certainly remember what you've said.

It would be amazing to go to a doctor who was actually not railing against my every move, ha ha. I just don't think I can afford it unfortunately at this time.

Thanks so much for your advice, it's very helpful and encouraging :)

faith63 profile image
faith63 in reply to

T3 is not dosed by TSH readings.

in reply to faith63

It does often lower tsh though, so I assume that is what is going on :)

faith63 profile image
faith63

Do you have thyroid issues, really? Any abnormal tests? Have you had a free t3 and free t4 done?

t4 is inactive, all thyroid meds need to be taken daily. t4 doesn't convert well, with low ferritin and a whole bunch of other reasons. You never gave t3 a chance. TSH is not a very useful measure of anything much, but pituitary hormone.. You need to do more research. You need to find out if your thyroid is a real issue. You need to learn all about how thyroid meds work.

I wish i knew where to direct you, but using t3 now and then does nothing. A TSH of 1 or 2 is normal.

in reply to faith63

Well my skin is swollen up in that mucin/myxedema symptom which as far as I'm aware can only be hypothyroidism; other things like severe fatigue, lifelong reynauds and low temps seem to point to HT. It's sort of broken loose after I was in recovery from 5 years anorexia, I just seemed to get sicker when I was meant to be getting healthier.

An earlier blood test about 6 months ago showed I had "normal" results, but I discovered through this site that my t4 was on the low side and my tsh was too high. Not really drastically, so that is good, but I have no idea what is normal for my body so due to my circumstances I am left with trial and error pretty much.

I did give t3 a chance, I tried taking it per various protocols I have read on here for at least two months and I stopped because it was giving me crippling migraines. It seems to have stopped doing that now, at least at lower doses, but my gut feeling is that I need to try something else at this time.

I am not trying to defend my likely questionable decisions, only explaining my weird logic ;)

But yes I will continue to research further and better optimize my nutrition and everything else too, like stress, sleep, etc.

Thank you for your input xx

Superparrot,

Your ferritin, folate and B12 are good.... .. compared to what they were.... keep supplementing and aiming to reach higher levels..

Your medical history denotes that your body is going to take longer to repair BUT you are on the right road as your levels are raising... hooray ! ..

I would say don't take ANYTHING regarding T4 & T3 until all nutrients are optimal and cortisol levels are good as your body won't convert T4 -T3 anyway unless optimally neutralised and you may be just chasing the wrong diagnosis.

Your turn around is so good .. look at your progress and except that hormones take ages to settle.

T3 taken inconsistently may well do you more damage than good ! .

S. Boulardii is good to take as will help with your gut issues. I take it myself..

Flower

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Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

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in reply to

Thanks flower, I think that is a very sensible approach and the one I plan to take :) I have finally realized that there is no point rushing, which is probably the most important rule of health! It's like, "I want to get healthy NOW!" And of course it doesn't work like that, ha ha. Thanks for your time and patience xx

in reply to

lol.. We all want to get healthy NOW ! ! .. superparrot.

Unfortunately the one rule with thyroid hormones is you can't rush them or other things will go wrong.

You may find your lethargy gets better and your hormones right themselves without any need for meds.. it is so worth waiting.

F

in reply to

You're right, you never know! Certainly my diet is the healthiest its ever been, for sure. Its been worth it all just to force me to improve that at least :) so it may just be a matter of time, fingers crossed. If I come across a miracle cure somehow I will definitely let everybody know! ;)

in reply to

As long as its me first..! ! ...

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