T4 only users - blog entry

[Danielj1]

stopthethyroidmadness.com/2...

Read down the end at all the things a T4 only approach will do to me.

Time to double the coffee, black cumin seed oil and find some alternatives lols.

Why do they write this stuff ?

[bantam12]

Why do those of us who are well on T4 only have to endure the never ending Levo bashing, it really gets my goat 😡

[Danielj1 in reply to bantam12]

So why do they do it seriously ?

[bantam12 in reply to Danielj1]

No idea, are they jealous that we don't have a problem with Levo 🤷‍♀️

My husband doesn't get on with Levo but so what he's found what works for him and gets on with it, he doesn't keep telling me I'm delusional and just imagining I'm ok or that I'm stupid for accepting second class replacement that's going to cause me loads of trouble. The other replacements aren't squeaky clean either, everything has the potential to cause issues but how often do we read about them, rarely, if ever.

[greygoose]

Well, that's the thing with STTM, isn't it. Dogmatic in the extreme, and anyone that doesn't agree gets kicked off the forum. It's NDT or nothing, as far as they're concerned. No flexibility, no tolerance, no compassion. Started out as a good idea but has gone too far the other way, IMHO.

[Vallillyann1 in reply to greygoose]

Thank you grey goose for saying that, I got kicked out there after raising concerns about the amount of Hydrocortisone being suggested to people with weak adrenals, I asked for patient experience & it wasn’t there. It’s like a cult ! Still with mantra or they will kick you into long grass.

[greygoose in reply to Vallillyann1]

Yup, that's the way it is. Just like a cult.

[TSH110 in reply to greygoose]

greygoose I am quite shocked to hear this aboutSTTM, it is one thing to want more choice but quite another to impose an NDT monotherapy on everyone to replace T4 and quash any real discussion. I know my mum and sister felt/feels great on Levo and was/is really happy with it. We need choice not dictates!

[greygoose in reply to TSH110]

Totally agree with you, we do need choice. We are all different. Makes me so cross when people rattle on about how wonderful NDT is. I don't doubt it is for some people, but it wasn't for me. In fact, it was worse than T4 only! I am best on synthetic T3 only.

And all this blather about NDT having ALL the thyroid hormones! If there really is T2, T1 and calcitonin, why doesn't it tell us on the bottle how much there is, like it does T4 and T3? The thyroid makes such tiny quantities of these - if any - most comes from conversion - that it's doubtful they would survive the processing.

What we need is to be able to experiment freely to find what suits us best as individuals.

[Hashihouseman]

I agree, although I don’t tolerate high doses of levo and have to supplement with ndt to minimize the side effects levo is a life saver and people who avoid it like the plague in favour of NDT are I suspect stressing their physiology with un-physiological for humans porcine thyroid alone. How their cardiovascular systems tolerate it I do not know! Still, as ever we are all different.......

[TSH110 in reply to Hashihouseman]

Hashihouseman my main problem with levo was heart problems as well as other unresolved hypothyroid symptoms but NDT has hugely improved them. I presume our bodies take what they need and expel excess as the working thyroid is dynamic rapidly responding to our hormone needs and increasing or decreasing supply as required. It stands to reason mechanisms must exist in our bodies to fine tune useable dose.

I presume T4 only does not provide me with enough T3 (my genetics support this) hence the heart problems and a small amount of T3 was probably all I needed extra to T4 to sort this out. It was never offered to me, and now it is very difficult to get any without a huge battle.

It would have been my preferred route to good health rather than NDT.

[jgelliss in reply to TSH110]

TSH110

Having had TT T4 did not work for me fully . It would have been nice though . Having palpitations , weight issues, insomnia, jaundice, anxiety, panic attaches etc. Adding NDT for my T3 helped with my symptoms . Healthy thyroids do produce both T4 and T3 .

[helvella Administrator Thyroid UK in reply to Hashihouseman]

Hashihouseman,

I suspect that desiccated thyroid could be unphysiological for pigs!

Just because the ratio is just over 4:1 (T4:T3) in dried pig thyroid doesn't make it the right ratio to be released into a pig's bloodstream. I have not found any good information on this issue.

[Hashihouseman in reply to helvella]

Yes I can see where you’re coming from with that, what’s in the gland when it’s seized and freezed isn’t what it ordinarily secretes and I was playing fast and loose with physiological compatibility. Dried pig thyroid isn't a perfect substitute for human thyroid secretion, nor would we be better off with dried human thyroid , for many reasons !. So we are stuck with finding something, some appropriate cocktail, that delivers as near as possible human thyroid secretory outputs for plasma transport and storage conjugations that can deliver free thyroid hormones wherever and whenever we need.

[Hashihouseman]

And yes I am jealous of people who can successfully replace thyroid hormones with t4 alone! It’s cheap and easy and supported, everything else isn’t.

[TSH110 in reply to Hashihouseman]

Hashihouseman and vegetarian friendly. My mum and sister was/is fine on it but me the dedicated vegetarian could not get well on it no matter what dose I took and regrettably I had to resort to NDT which did improve things. T4 saved my life too.

I wish it had been right for me long term.

[silverfox7]

I started off with NHS NDT and a strike caused me to go over to Levo and was good on that as well but things went haywire around menopause so back on NDT again but I did once read somewhere, wish I could remember where that Levo only works for 15 years well I lasted a lot longer than that but putting us into boxes will never work because we are individuals who can react very differently. The sooner medics realise this then more I'm sure will be helped

[Danielj1]

All interesting views. I am still pressing on with every route known to man to increase T3 conversion. I have seen an advert for importing pig thyroid from NZ that I find frankly disgusting ie alternative does not bear thinking about !

My secret weapon above all is black cumin seed oil and particularly going to higher strength capsules.

It is making me feel so well medicated the next move will be to reduce back from 50 to 25

I still retain the belief one day I can get off T4 altogether. If I fail it will not be for lack of trying. I do not think T4 is that good for me at all - but it is all we have in my surgery as far as I know.

[helvella Administrator Thyroid UK]

Danielj1,

The link you posted includes this statement:

NDT gives you all five thyroid hormones, and does NOT force you to live for conversion of T4 to T3 alone, i.e. some of NDT is direct T3. Additionally with T4-only, some people have genetic mutations which hinder the conversion of T4 to T3 and may not realize it.

Now just which thyroid hormones do they mean? I assume T4, T3, T2 and T1 - and which other one? T0? I personally find it difficult to consider a non-iodine containing molecule to be a true thyroid hormone. And without quantification, we have no idea whether any that are present could be significant. I'd also point out that desiccated thyroid could very well contain some rT3 and MIT and DIT (the precursors of T4 and T3).

The second sentence is just nonsense. It is written as if taking T4 in some way changes your genetic make-up. Having those genetic mutations simply matters more if you have no intake of T3.

[Danielj1 in reply to helvella]

Thanks H,

My honest view is there is little to no education for patients on their genetic disposition to convert T4 to t3. I have had spent a huge amount of time researching on the web and am slowly proving which recommendations work. My regular blood testing has proven a steady but significant increase in t3 and this is making a huge difference. So for now see no need to seek out t3 alternatives.

Last night I cut back to 25 T4 from 50 and had a really good rest. At the end of the day in the absence of a proper support mechanism it is down to personal hunches, research, and quite costly supplements and blood monitoring.

Never thought this new journey would end up at this stage but we are where we are they say....