When levothyroxine doesnt work for people does the drug give side effects or is it that it doesnt have an effect on the hypo symptoms?

[sezzy]

[Moggie]

It can give some very nasty side effects - some on here have described as being poisoned. Sometimes its the fillers that caused it and sometimes its the levo itself.

Moggie x

[Clarebear]

Strictly speaking levo isn't a drug, it is a replacement for a hormone made naturally in the body. However, it has to be converted by the body into a more active hormone T3 before it can actually be used. Some people have a problem with the conversion process and these people often do better with some direct T3. Hope that helps. Xx

[sezzy in reply to Clarebear]

I know but drug was quicker and smaller to fit in lol.So both are saying its a mixture of the two?x

[RedApple Administrator in reply to sezzy]

Yes Sezzy, it can be both. For some people, no matter how much they take it never properly alleviates their hypothyroid symptoms, for some people it works to some extent but also gives unpleasant or nasty side effects, and for some it does both.

[sezzy in reply to RedApple]

Thanks for all of your comments.

[charliecooper]

For me, it did nothing, no different whatsoever in my symptoms. When I eventually increased it, I felt worse - no energy and slept for ages.

[Heloise]

sezzy, if you have access to blood tests while on it, you may see a high level of FT4 in your blood and with a very low FT3 reading meaning it is not converting so as to be usable by the tissues. stopthethyroidmadness.com/t...

[tegz]

Could be that T4 tabs need nutrients [esp.minerals] to work the process.

If these are not available then conversion would be affected and nutient stores also be reduced by the demands of T4, too.

Iron is particularly odd -as it's both needed but not taken well at the same time as T4.

These factors seem to be neglected by GPs, who are not very nutrition literate.

[That's another dept!]

It takes time for hormones to work through and also to get body stores right to cope- easy to get the timing wrong when on marginal levels of either factor.

No wonder it's a struggle... and could partly be why the faster acting T3 gets a better press.

[Hidden in reply to tegz]

T4 worked very well for me for about 6/7 years. However, when it appeared to stop working and my TSH soared an increase in T4 did nothing and I felt awful. It would have been easy to throw the baby out with the bath water at this point but further investigation showed that I had acquired a conversion problem and with T3 added in and a boost of B12 and folate the T4/T3 combo is working very well. For me it would have been easy to blame the T4 for my continuing symptoms but the biggest hurdle is that GP's (or labs) won't test FT3 which makes it impossible to see what is going on.

[tegz in reply to Hidden]

Good that's it's possible to get a FT3 privately- even though it's expense we shouldn't have to bear. Good to hear your T3 worked.

Maybe it keeps the Endos case load higher- but I'm an old cynic

[washealthy]

hi levo, did not work for me either. I started with 25, felt terrible, it was doubled to 50 and I felt like I wanted to die. Stopped taking the meds, feel so much better. Went to visit endo at hospital, he is going to micro manage me, by giving 6.2g of levo , and if that doesn't work let me try armour, failing that he wants me to go to cambridge for research. Have to say the hospital are really doing their best to resolve my problems.

[vajra]

I don't do well with too much T4, but it's hard to know what goes on S.

Some seem to respond badly to additives, and differently to different brands - but that's presumably the case with T3 too. (it is for me anyway - i'm not that sensitive, but can usually detect differences between brands)

Some with longstanding metabolic illness have reached a point where they are hyper sensitive to what they take in.

My understanding is that beyond that it's a lot to do with our individual ability to use the stuff. There's research that suggests that for a variety of reasons some have rather more effective processes for converting T4 to the active T3 form that we need - that a significant proportion are for a variety of reasons compromised in this regard.

There's a view that synthetic T4 is harder to covert than the animal product in e.g. natural dessicated thyroid anyway.

If we're not converting properly that sets up two potential problems.

First off it seems we may not make enough of the active T3 form to feel well - we despite apparently normal blood reserves of T4 are hypothyroid at the cellular/metabolic/point of use level.

Secondly we can as result experience high blood levels of T4. This isn't being used, but it seemingly can and does influence the control responses within our endocrine system. There are suggestions that it can for example result in the de-activation of the T3 we do make. Which again leaves us hypothyroid.

Against that there are those lucky types that do fine on T4 alone too.

The essential issue is that the system and most doctors de-facto presume that all are in this category, and like to pronounce that our thyroid and/or replacemet is 'normal', and that there is no problem when the amount of T4 in our blood is within limit.

This regardless of the above, and of the fact that the patient may be experiencing severe hypothyroidism - and obviously displaying the symptoms of it....

ian