Really unwell on changing from Levo to Armour N... - Thyroid UK

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Really unwell on changing from Levo to Armour NDT… advice needed please guys

Blanche1960 profile image

Hi, sorry guys posted about this when initially started Armour 6 weeks ago but struggling soo much… just to re brief

I have no thyroid due to cancer 4 years ago and struggled ever since with Levo etc so asked Endo as last resort for NDT which he prescribed 60mg Armour…stopped Oral Levo 6 weeks ago and started day after on 1 grain daily as advised by Endo!

He increased it by 1/4 two wks ago till next appointment in 3 wks which he will then do bloods and maybe increase again by another 1/4… his thinking was that I may need about 1 And half Armour as was on 150mcg (oral equivalent Levo) before and said I was slightly Over on that dose!

I’m confused by this as he stated 1 grain armour equivalent to 100mcg but on bottle (and seen it somewhere on here) it is 38mcg T4 9 mcg T3 which equates to 74 not 100… so 1 and half will only give me about 110 in total which is far too low!

Am I reading too much into this guys… just soo worried and unwell…feel like throwing towel in… not sure if can tolerate the slow build up feeling soo bad!

Since increasing by only 1/4 two wks ago I fee so fatigued, )used to living with fatigue, migraines, chronic nerve pain as have ME/CFS/Fibro ) etc but this a different fatigue feel like been drugged, all over cramping muscle pain head to toe, palpitations pains in chest n stomach, diarrhoea on and off… worryingly I’m struggling to speak even more than before muscles soo tight in head and face, voice feels really weak… it hurts to speak makes hard/facial pain worse, grinding teeth a lot too, can feel muscles pulling up on face, brain zaps similar to coming off antidepressants etc….strange over heating flashes (not like menopause hot flushes )much worse makes me feel faint, and upsets stomach… So sorry long list hope you all still awake lol

Joking apart at my wits end… on top of 2/3 hours sleep a day… do you lovely guys know if this sounds normal on building up NDT and is it worth trying to preserve, I’m 62 and had to Take early retirement before cancer so not got work to do like lot people on here, but struggling even more to function!

Pharmacist from Gp surgery rang today so told her, she thinks should contact Endos secretary ASAP as Gp probably wouldn’t be able to help with them not prescribing it!

On another note the pharmacist had never heard of NDT so tried to enlighten her with bits picked up on here, she never knew lots people struggle with Levo and different brands etc was going to read up about it so least educated someone!

Know it’s a long drawn out process but Should I persevere (if I can) or contact Endo… Know we all different but does this sound normal to you guys who’s battled with NDT???

Ps persevered for 4 years building Levo up and down many times, was changed at nearly every 4 monthly appointment… but this is a different level of being unwell if you know what I mean!

Sorry for essay guys!!!

Hope you all had lovely bank holiday weekend !

67 Replies
SlowDragon profile image
SlowDragonAdministrator

Are you taking your NDT all in one dose or splitting it and taking 2 or 3 doses spread through the day?

When were vitamin D, folate, ferritin and B12 last tested

Looking at previous posts you had low folate a few months ago

Essential to regularly retest and maintain OPTIMAL vitamin levels

Hi SlowDragon,Thanks fir replying yes I’m taking NDT in one go about 11.30/12am on waking (sorry long story… got insomnia don’t sleep while 5/6am really nocturnal unfortunately but that’s another story) I can feel it building over the afternoon, by teatime symptoms horrendous… then can’t eat properly as feel like going to burst with tightness round chest/back/top of tummy… assuming all muscles tightening up!

I had Vits/folate etc tested January and they were ok from whst I can remember… I now take a magnesuim multi Vit with folate in too and mouth spray VIT D… could ask Gp to recheck if they would!

Could I just ask please if you don’t mind… when have next bloods do you miss NDT like you do with Levo then take it straight after test!

Thankyou so much

Blanche

SlowDragon profile image
SlowDragonAdministrator in reply to Blanche1960

I now take a magnesuim multi Vit with folate in too and mouth spray VIT D

Multivitamins are never recommended on here ….too little of what we do need and cheap poorly absorbed ingredients.

I had Vits/folate etc tested January and they were ok from whst I can remember

Please add actual results and ranges for

Vitamin D

Folate

Ferritin

B12

Then suggest you only supplement what’s required

That’s usually separate vitamin D, magnesium and a GOOD QUALITY vitamin B complex that contains folate. Possibly a separate B12.

Thank you will start a new post with blood results!

Like all forms of thyroid hormone replacement - and all other hormones in general - with NDT you have to start low and build up slowly. With NDT, that normally means increasing by 1/4 grain every two weeks.

Your endo is kidding himself if he thinks he can guess in advance how much you're going to eventually need. He can't. And, no point in basing it on how much levo you were taking, because it's not the same thing. The fact that you weren't well on levo should give him a clue! lol And trying to work out how much x mcg T4 equals y mcg T3 is a nonsense. It depends how well you convert. And, by the sound of it, you don't convert very well. But, bet he never tested FT3 to find out!

As to being over-dosed on levo because your FT4 was slightly over-range, that's another nonsense. You're only over medicated if your FT3 is over-range, but if it's never tested... Or was he going solely by the TSH? Which would be even worse! All in all, doesn't sound like this endo knows that much about treating hypothyroidism, I'm afraid. :(

Thanks grey goose… I despair about the Endo as explained to Vino 77 he runs joint clinic with oncologist once a month for people who’ve had thyroid cancer and struggling soo you would think he’s top of his game as he once pointed out his full title belittling me… get soo nervous round him and most drs so doesn’t help! Anyway yes he doesn’t check T3 anymore last tested 10 months ago… said no point but got lost on explanation why!

Re: over medicated…

Started NDT in March… previous bloods done in Feb at hospital were

TSH 0.76 (0.27-4.2)

T4. 23.5 (12-22)

Very similar to bloods 4 month prior too but still struggling hence asking for NDT.

I’m suprised that didn’t feel this bad when starting on 1 grain… only felt much worse 5 wks after when he increased to 1 and a quarter … maybe because all Levo stored will have disappeared now so just running on Armour! Will keep plodding on thanks again!

Someone who is top of his game doesn't need to belittle his patients to feel good about himself. Not only is he a rubbish doctor, he sounds like a rubbish person, too.

I don't suppose he even knows why he doesn't check FT3. Not many of them know anything about it.

I find it ironic that he reduced your levo with those results. Your TSH isn't even below range (not that that's a good reason for reducing doses, but still...) He should know that some people need their FT4 over-range to get enough T3 to live.

If you feel worse since the increase in dose, have you tried going back to one grain and see if you feel better? It could be because the levo has all left your system, now but there's not that much difference in the levo dose and the T4 your taking now. And, if you can't even convert it well, it doesn't serve much purpose, anyway, now that you've got the T3 in NDT. But, NDT doesn't suit everyone. We have to face that. Could be that you would be better off on levo with some added T3.

Yeah maybe it’s no good for me but was so desperate… It was me who asked Endo on my routine 4 monthly appointment if I could try NDT (he was going to keep me on 150 Levo) was so surprised he said yes but apparently ok on NHS for ex cancer patients…said he gives it to private patients too… he did say he didn’t think it would help but happy for me to try it… before he’d said I’d exhausted everything and put symptoms down to ME/CFS etc Which I know are similar!

Sorry soo confusing feel brain dead!

Thanks again for your valued info!

Oh, I don't blame you for wanting to try! I moved heaven and earth to get NDT some years ago, because I wasn't good on levo. And I live in France where no pharmacy will sell it. Finally got it, and it was the worst mistake I ever made! It did not suit me at all. I'm far better off on T3 only.

I would not believe your endo when he says you've exhausted everything. I very much doubt that. Have you ever tried T3 only? Or T3 added to levo? There's always something you can try or something you can do differently. Sounds like he's just a quitter! And putting symptoms down to ME/CFS is just a cop-out. It very often turns out that what was diagnosed as ME/CFS was actually poorly treated hypothyroidism, and that's why the symptoms were the same.

SlowDragon profile image
SlowDragonAdministrator in reply to Blanche1960

Anyway yes he doesn’t check T3 anymore last tested 10 months ago

Just because endocrinologist doesn’t test ….doesn’t mean you can’t

Thousands of members forced to test privately to make progress

Insomnia often linked to low Ft3 (and low vitamin D)

Suggest you trial taking NDT as split dose

On levothyroxine plus T3, many of us find taking small dose T3 at bedtime improves sleep

Ah thats great will try splitting if it helps me sleep be brill Thankyou!Yeah I’d love to be able to afford private tests… but another thing that puts me off as well is don’t think I could do it myself so would have to pay a nurse to do it… but this time with trialling NDT I will do private tests… it’s so frustrating hospitals don’t do it when it’s so important but you will have heard this many times on here!

Thankyou soo much will try your suggestions!

SlowDragon profile image
SlowDragonAdministrator in reply to Blanche1960

Don’t suddenly change from taking whole dose waking ….move SLOWLY

What dose Armour are you taking…is it possible to split it into smaller doses

I take levothyroxine plus T3…..over 20 years since I tried NDT.

I split my levothyroxine and my T3 …..as 3 doses spread through the day.

Initially when T3 was added ….first started as as two 2.5mcg doses - waking and late afternoon…..then after 2 weeks increased to 5mcg twice

After 6-8 weeks another 5mcg dose T3 was added and timing changed to 6am, noon and 6pm

After about 10 weeks on T3 I discovered it was better to spread out to roughly equal 8 hour intervals…..7am, 3pm and 11pm

Taking small dose T3 at bedtime improves sleep for many members

But you can’t rush sudden changes ….slowly slowly

Thanks slowDragonIve got 60 mg Armour tablets…on 1 1/4 a day at mo.. stopped 150 Levo one day as advised in March… started on one NDT tablet next day… 5 wks later he increased it 1 and a quarter which I’ve took for two weeks… this is when felt really unwell on increase!

I split one tablet into 4 but end up with lots bits!

Sorry Not sure how I could split that dose!

Glad you got good outcome after all changes… soo complicated hey!

Well for me lol

SlowDragon profile image
SlowDragonAdministrator in reply to Blanche1960

So can you move the 1/4 grain to late afternoon initially

Great stuff will do that! Why didn’t I think of that.. I was just thinking trying to half 1 and a quarter!

SlowDragon profile image
SlowDragonAdministrator in reply to Blanche1960

I found in lockdown, when had to do DIY fingerprick test myself…..it’s fine

But follow SeasideSusie tips on how to do it

I find it important to be warm, exercise for 10-15 mins before to get hot….and stand up to do test

healthunlocked.com/thyroidu...

Thanks for brilliant tips will have a look at that link thank you!

From memory both Medichecks and Blue Horizon offer a nurse ' home visit ' to draw your blood if that suits you, it's an added cost and think between them they offer a country wide service.

Hi pennyannie that’s useful to know Thankyou so much!

Batty1 profile image
Batty1 in reply to Blanche1960

My Endo deals with only thyroid cancer and actually does research for it and is the top of his field but he is actually a real life Magoo with a fancy title and personality of a rock …. But at least I can push that rock! I don’t care about your fancy name plate show me you can do what you say you can do.

ettiebetty profile image
ettiebetty in reply to greygoose

When I'm high in range on levo I am extremely ill so it is possible to overdose on levo.

greygoose profile image
greygoose in reply to ettiebetty

But, when your FT4 is 'high in range', is your FT3 also tested? It's really not that simple. 'Over-dose' is a bit of a misnomer. It won't kill you. :)

Blanche, I swapped from Levo to Armour too, around 10 years ago. But as I’d been ‘written off’ by GP in U.K., I went to a renowned specialist in Belgium ( where natural thyroid is frequently prescribed). He stressed the vital need to be weaned off Levo and onto Armour very, very slowly ie slightly lessening dose of Levo and adding the natural thyroid slowly too. It took me 3 months before I was off Levo completely. I too have had thyroid cancer ( no thyroid) and I got no symptoms from change - apart from feeling so much better! Don’t compare your levels of TSH/ T4 between the synthetic and the natural dosage, ever. It’s like trying to compare apples and bananas- entirely different. GPs are frequently unable to help you with dosage and GP thyroid testing ( taking bloods) is not appropriate for anyone on natural thyroid. The only way round it, to get your dosage right and to monitor your TSH/T4 and T3 is to pay a private endocrinologist once a year for a consultation. You can give him/her your correct blood analysis( for natural thyroid takers) by paying only £29 to ‘Monitor my Health’ who send you a finger prick test kit and they are excellent according to my private specialist. He’s been using them for years. Im about to use them too. Hope this helps.

Blanche1960 profile image
Blanche1960 in reply to

Hi Vino77 Thankyou for your informative reply! Good to hear you got to feeling well again! My Gp doesn’t alter my doses at all… I’m still under oncology every 4 months for blood tests no T3 though these days… it’s a joint thyroid cancer clinic which my Endo does jointly with oncologist! He does private work too apparently, knowing my luck would get one like him… told me to ignore internet etc went on to give me his full consultant title quite shirty with me, frightens me to death… probably my anxiety brain fog etc can’t get words out properly! Need to man up and fight my corner, just so overwhelming!

Need to do private tests least know what t3 is so yes Thankyou for the useful info will definitely take it on board!

Kind regards

SlowDragon profile image
SlowDragonAdministrator in reply to

Monitor My Health Is even cheaper at £26.10 if get voucher code here

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

Thankyou for this!

Blanche1960,

Oh poor you,

I would expect you to end up on about 1.5 grains NDT too but as explained previously I found Armour T3 potent so you will need to be mindful re FT3 levels going to high and may even need to retain a little Levo in your final dose. Has endo tested FT3?

Although 1 grain (38mcg T4 + 9 mcg T3) contains only the equivalent of 65mg T4, it is claimed to be biologically equivalent to 100mcg by NDT manufacturers. This is because the ways then deidinase enzymes work means a little bit of T3 will help more further conversion of T4. Of course our conversion abilities are very individual and dependant upon many factors such as other health issues and meds, elevated thyroid antibodies (which you won’t have) or other inflammation, diet and lifestyle, etc., etc ...

Even if you have medicated T3 for a period previously it still sounds as if you are raising too fast. You shouldn’t have to persevere with thyroid meds. They should be making you feel better. Are you split dosing?

I asked in your last post if your iron and nutrients are optimal. Have you got any test results to post including ranges (numbers in brackets)?

Blanche1960 profile image
Blanche1960 in reply to radd

Ah Thank you so much for this info!No not split dosing.. they haven’t checked T3 since July last year which was 4.7 (3.1 -6.8) on 125/150 alternate days Levo! Then increased to 150 everyday which I took till 6 weeks ago! Surely they will test it again next appointment with starting NDT but who knows… I will pay privately if they don’t!

Last Vit iron etc done in January but no figures sorry!

Before starting NDT In March my TSH and T4 were

TSH O.76 (.27-4.2)

T4. 23.5(12-22)

Very similar to Results 4 months prior!

Thank you so much!

radd profile image
radd in reply to Blanche1960

Blanche1960,

You were well over-medicated on T4 and TSH still within range! That is an odd result that alone warrants getting FT3 tested. I would also say this is paramount to ensure FT3 levels don't end up going really high.

We can end up with elevated RT3 when over-dosing T4 as the body simply can not use such elevated amounts. Elevated RT3 can prevent good usage of T3 as also can inadequate iron levels.

I would be wary of this endo because NDT should never be started without knowing FT3 levels beforehand. If I was you I would reduce the Armour and replace with a little Levo.

Blanche1960 profile image
Blanche1960 in reply to radd

Thanks RaddThey just look at ranges don’t they and as long as you fit in them they not bothered… regardless how you feeling!

Yes I thought it funny he’d not tested t3 before issuing script… he’s always in a rush… part of the consultation with him is him dictating outcome on a machine for secretary to type which is usually done after surely… must be me feel like I annoy him… not sure how he’d go on with someone who can speak and understand it all properly like you amazing people on here… He didn’t even have computer on in few appts just jotted on piece paper… only put it in to check why A&E sent me home with sky high BP and pulse last Oct… GP sent me with palpations!

Frightening!!

Rant over lol

in reply to radd

Elevated RT3 can prevent good usage of T3

Hasn´t that myth been debunked; that is, that rT3 blocks the action of free T3? In more recent articles, it is said that rT3 is inactive, only stays in the body for a few hours before being converted to T2 and/or recycled, and that it is too weak to block free T3. I know the rT3 dominance myth is perpetuated on many forums, most notably the STTM, but the question is: does it still hold true? Of course, taking more T4 than you need may not be a good idea if the body cannot use it but, even if excess T4 is converted to rT3 rather than FT3, the question still is: is that a problem?

in reply to radd

PS. I think this article explains it pretty well, without being very technical as many other articles on this website:thyroidpatients.ca/2019/11/...

radd profile image
radd in reply to

PurpleCat71,

'Of course, taking more T4 than you need may not be a good idea if the body cannot use it but, even if excess T4 is converted to rT3 rather than FT3, the question still is: is that a problem?'

Yes, it is a huge problem as indirectly reduces levels of T3.

The myth that has been debunked is that RT3 blocks T3 receptors. As you have highlighted I said’ Elevated RT3 can prevent good usage of T3’, purposely not mentioning receptors knowing it likely to invite challenge.

🤔 …. I don’t know about RT3 staying in the body for only a few hours before being converted to T2 and excreted when we are unwell. Your article doesn’t state that, but that ‘In health, the RT3 level is largely based on how much FT4 you have in relationship to FT3 in blood, and how much T3 is signaling in receptors. The more T3 you have entering nuclear receptors that regulate D1 and D3 enzymes, the more RT3 you will make from T4 in circulation via D3, and the more RT3 you will clear.’

The length of time RT3 stays in the body is dependant upon the clearance enzymes that are in turn influenced by multiple other factors including each other and most importantly illness. It is never predicable, evidenced by your article stating ‘in severe illness the T3/RT3 relationship changes because the deiodinases are dysregulated. D3 is upregulated by cytokines and hypoxia, and D1 and D2 are downregulated by similar methods’, and during illness RT3 is quite capable of extremes; hanging around for weeks or being excreted too quickly.

Going back to my statement, 'elevated RT3 can prevent good usage of T3' because it is also the T3 that is converted into inactive T2 concurrently to T4 converting to RT3. Both are driven by the same Deiodinase type 3 (D3) that rises to dominate in states of illness and/or excess T4/T3. This reduces levels of T3.

Therefore, having elevated RT3 by default means D3 is up-regulated and it is D3 enzymes that block T3 from entering the cell’s nucleus, (not RT3). In the link below Tania Smith states ‘In the D3-expressing (D3x) cell, the aim is to simply prevent T3 from entering the nucleus by converting it to another hormone before it gets there. That way, more nuclear receptors remain unoccupied by T3, because it’s more rarely a T3 hormone gets past D3 without transformation’.

thyroidpatients.ca/2019/11/...

Furthermore, when our T3 levels drop D1 becomes down-regulated and cannot efficiently clear RT3 from our blood (so leaving some RT3 hanging about). It also loses some efficiency in conversion of RT3-T2 (so leaving further RT3 hanging about), but also impairs conversion of T4-T3 (so reducing T3 levels further). Even when T4 levels are too low to create RT3, D3 can still up-regulate in the presence of elevated T3 so this would still result in conversion to inactive T2 and lower T3 levels.

I haven't seen the article you have supplied before. It was interesting as all Tania Smith's are, but it concentrates on the inaccuracies of past myth and the studies by Chopra. For up-to-date RT3 knowledge, the article I have linked above is still by Tania Smith and offers more informative present day thinking.

in reply to radd

I have read the article you link to before, but decided not to mention it as I honestly believe that Tania S. Smith is too complicated for her own good. I don´t know for whom she writes - maybe doctors/researchers - but I doubt many laypeople can make sense of what she writes. She does not help thyroid patients by using one complicated medical term after another. To many people, it may sound convincing because it is incomprehensible. But again, that leaves the question: which readers is she targeting? Is she really expecting a majority of thyroid patients to understand all this scientific stuff? More generally, I believe it´s counterproductive to tell people that high rT3 levels are problematic without offering them any concrete advice as how to determine:

- exactly when are rT3 levels to be considered too high? As of which level? Is that the same for all patients, or is it variable? After all, people need different levels of FT4 and FT3 to feel well (both in health and when on thyroid hormone replacement), so how does it work with rT3? Is there a "one size fits all"?

- given that so few laboratories seem to test rT3, not to mention that so few doctors order this test, how are patients supposed to diagnose problematic rT3 levels?

- how to lower high rT3 levels? In order to do that, they would need to know what caused them in the first place. Going off or lowering levo will lower rT3 for sure but, if the cause is not identified, they would have to stay off levo or rT3 will rise again if they don´t address the reason it was high to begin with. But, as has been pointed out several times, by greygoose among others, high rT3 levels are not always thyroid-related...they can be caused by low calorie diets, yo-yo dieting, inflammation, serious illness/hospitalisation when the body needs to slow metabolism down, and a lot of other factors so, without knowing the cause, how are patients supposed to lower their high rT3 permanently to begin with? Is going off or lowering levo and adding T3 permanently the answer?

The fact that high rT3 can be caused by many things not thyroid-related also means that people without thyroid disease can have high rT3 levels. Do they also have symptoms of low metabolism?

Also, anorexia is an interesting example as starvation is said to cause high rT3. It makes sense because the body is trying to preserve energy. But that would mean that anorexia patients would be overweight, not underweight, if high rT3 means less free T3. However, they are not.

In many cases, I guess it would be very difficult or even impossible to pinpoint the reason rT3 was high to begin with. After all, most thyroid patients have autoimmune thyroiditis so inflammation. They have been trying to lose weight for years, often by severely restricting calories. And so on and so on. So, in theory, those patients would have to take less levo and more T3 indefinitely to keep rT3 down, unless they could find a very knowledgeable doctor to work with them, help them find the cause and correct it. And such doctors are few and far between, at least in Europe.

Also, some people who have had their rT3 levels tested have found out their rtT3 levels were high, but they were asymptomatic. So, does high rT3 really cause symptoms in all patients? It would seem not.

radd profile image
radd in reply to

Oh my goodness PC71,

I have given explanation backed with evidence for why T3 levels reduce in the presence of RT3, and why your statement ‘it is said that rT3 is inactive, only stays in the body for a few hours’ risks being incorrect during illness.

You have then asked a load more questions which I’ll try to answer best I can but they will only be opinion based (thank goodness for copy & paste 😬).

I honestly believe that Tania S. Smith is too complicated for her own good.

But YOU gave ME one of her articles! 🤣🤣🤣

‘She does not help thyroid patients by using one complicated medical terms

Tania Smith has been recognised by both our own Diogenes and Americas Antonio Bianco. They are all fighting our cause, and Tania writes about the immense complexities of thyroid hormone in a simpler form for us patients to try gaining understanding. What she can not do is change these complex mechanisms, only attempt writing about them in a simpler form which she tries complete with many diagrams. I know some members & others including myself have benefited hugely from her articles. I am sorry you don't understand but does it even matter when you have top scientists telling you. It is helpful to understand but not essential in the believing of something.

I believe it’s counterproductive to tell people that high rT3 levels are problematic without offering them any concrete advice as how to determine’:

Tania Smith provides all info in the article. It is better for everyone to supply evidence to back statements rather than to just say someone else has told you 🙄. It is also difficult to get across how damaging illness or over-medication of thyroid hormone can be without mentioning thyroid hormone enzymes and RT3. Diogenes has posted a wonderful article today on homeostasis of which thyroid hormone enzymes (deiodinases) will be hugely influencing. We can only offer what we know for others to use or ignore as they see fit.

frontiersin.org/articles/10...

so how does it work with rT3? Is there a "one size fits all"?

No.

'given that so few laboratories seem to test rT3, not to mention that so few doctors order this test, how are patients supposed to diagnose problematic rT3 levels?'

I don't know. Who said patients are supposed to diagnose problematic RT3 levels?

“how to lower high rT3 levels? In order to do that, they would need to know what caused them in the first place. Going off or lowering levo will lower rT3 for sure but, if the cause is not identified, they would have to stay off levo or rT3 will rise again if they don´t address the reason it was high to begin with”.

Yes, agree and the same for T3 meds also.

But, as has been pointed out several times, by greygoose among others, high rT3 levels are not always thyroid-related’…

Yes, agree. In fact overmedication is the only thyroid related cause of RT3 and everything else is too numerous to list.

The fact that high rT3 can be caused by many things not thyroid-related also means that people without thyroid disease can have high rT3 levels. Do they also have symptoms of low metabolism?

Not necessarily as some people just function well with high RT3 levels. We all require varying levels just the same as that of thyroid hormone. As a side note if a person were to become symptomatic with high RT3 without thyroid issues it is called non-thyroidal illness.

without knowing the cause, how are patients supposed to lower their high rT3 permanently to begin with?’

By using anything known to promote good thyroid function. Because the cause will remain unknown often many different approaches are required to alleviate symptoms but you must know this already. This is why the forum advocates for optimal iron, nutrients, etc, etc. Low iron & inflammation are most likely two of the biggest drivers of elevated RT3 on this forum.

‘Also, anorexia is an interesting example as starvation is said to cause high rT3. It makes sense because the body is trying to preserve energy. But that would mean that anorexia patients would be overweight, not underweight, if high rT3 means less free T3. However, they are not.

Errr, I think this a little more complicated than that, and way beyond my pay grade 😁. I've only really studied topics I have experienced myself.

In many cases, I guess it would be very difficult or even impossible to pinpoint the reason rT3 was high to begin with. After all, most thyroid patients have autoimmune thyroiditis so inflammation

Yes, and inflammation is a huge driver of RT3 and why it is thought lowering antibodies is important.

They have been trying to lose weight for years, often by severely restricting calories. And so on and so on. So, in theory, those patients would have to take less levo and more T3 indefinitely to keep rT3 down, unless they could find a very knowledgeable doctor to work with them, help them find the cause and correct it.’

No, that is an old debunked myth. Nowadays, T4 meds aren’t withheld, but possibly causes addressed, ie optimise iron, nutrients, reduce inflammation, don’t medicate more thyroid hormone than our body can tolerate.

Also, some people who have had their rT3 levels tested have found out their rtT3 levels were high, but they were asymptomatic. So, does high rT3 really cause symptoms in all patients? It would seem not

Already discussed above.

Remember RT3 is a natural metabolite that is made to keep our T4 & T3 hormones balanced and in amounts we can not only tolerate but make use of. It is only when there is imbalance that it can work against us. Hope all this helps 😊

Capella1 profile image
Capella1 in reply to radd

wo qestions we all want answered but dont no how to ask thank u rad 👍

in reply to Capella1

Would you care to explain what you mean in non-Shakespeareian?

in reply to radd

I only included that relatively short article by Tania as it is obvious you trust her, and it´s the only article by her I´ve found that I was able to read and more or less understand. Even if Tania´s expertise is recognised by both Diogenes and Dr. Bianco, that does not mean that her texts are user-friendly. She should have someone edit her texts for the public, or at least sum up her most important findings in an easy-to-read regular digest.

I cannot imagine many people find her articles easy to read. So, the question is: for whom does she write them? If doctors are the target group, fine. But they are not at all patient-oriented.

Personally, I feel that the rT3 dominance theory offers desperate people false hope. If rT3 levels are not routinely measured and monitored, how are people supposed to be diagnosed in the first place, and how are they supposed to know that treatment is working? And, if they don´t know what caused high rT3 in the first place, how are they supposed to stop it from rising again...there are simply too many variables involved for me to find these arguments in favour of rT3 dominance convincing.

tattybogle profile image
tattybogle in reply to

We understand things best when they are presented in the same way our mind works best.. i need pictures diagrams and analogies , rather than plain text statements because i have to 'see' how the cogs of a thing actually work before i can just accept a statement and apply it's meaning to another aspect of the process in question .. so even though i have to look at Tania's articles slowly , one sentence at a time, (and sometimes need a dictionary) ... i do find them very easy to understand because she obviously has a similar 'visual' method of understanding to me . I have spoken to lots of others on here who learn best in the same 'visual' way and who find her articles helpful. Her writing style will suit some of us better than others , it's true , but i assure you, plenty of thyroid patients do find her stuff very useable .

as for the RT3 issue , well i know where you're coming from about it being a false hope for desperate people , you do see so many people saying "it's my rT3 dominance" who clearly haven't understood (and are about to get fleeced) .

But even though that way of looking at rT3 is incorrect , i do understand that if the rT3 is caused by high fT4 then it does indicate an issue that we should address , because if it's caused by high T4, then the same D3 deiodinase processes responsible for the high rT3 will be making the overall T3 situation worse , by turning our T4 into rT3 before it gets to the nucleus, and turning more T3 to T2 faster .. so end result ... less T3 all round .

The way i understand what Tania was saying about rT3 and D3 was basically .. "it's not the rT3 itself that is the problem .. but in thyroid patients with too much T4 (for them ), the high rT3 is the canary in the coal mine, telling them D3 is lowering how much T3 is getting to their cells" ... or at least that's how far i've got so far over a few months of thinking about it occasionally ....... must admit i can only tolerate so much 'tania' at one time or it does make my brain hurt .. so i may not have got rT3/D3 100% sorted in my head yet ... but i understand enough to realise rT3 is relevant to patients with high fT4 levels, it's just not relevant in quite the way it was originally discussed in the now debunked " rT3 blocks T3 receptors" theory .

And i don't think we really need to test for rT3 (unless we've got money to burn) , because presumably we can deduce if high fT4 is likely to be an issue for someone by fT4 /fT3 /TSH levels.

in reply to tattybogle

Just to be clear on this: so Tania is now considered the authority on this issue?

radd profile image
radd in reply to

PC71,

Not Tania Smith alone. She is a professor but has no formal medical/scientific education beyond high school chemistry but is self taught through immersion in thyroid scientific literature.

She is also a poorly treated hypo patient, and T3 recovered her brilliant brain that can translate the works of John Midgley (the forums very own Diogenes), Antonio Bianco and the likes of many other thyroid hormone scientists.

Their recognition of her translations mean her understanding is genuine,

so she can offer real insight into scientific papers that are usually unavailable to us because of jargon and scientific terminology.

greygoose profile image
greygoose in reply to radd

A professor of what?

radd profile image
radd in reply to greygoose

gg,

Something obscure I think. I’ll look her later 😁

in reply to radd

Is this her; it´s the only Tania. S Smith (not Sonia) that I have found who is also a professor and in Canada?commfilm.ucalgary.ca/manage...

So, she is a professor of communication, film and media...not sure how that makes her an authority on thyroid disorders and treatment. She´s a thyroid patient? Well, so am I! Which makes me an authority on thyroid disorders and treatment...! From all the references to her "work" here, I expected her to be an MD and a professor of endocrinology...at the very least.

radd profile image
radd in reply to greygoose

gg,

Diogenes introduces Dr Sonia Smith to us here, as a tenured associate professor of communication at the University of Calgary.

.

healthunlocked.com/thyroidu...

greygoose profile image
greygoose in reply to radd

Thank you.

tattybogle profile image
tattybogle in reply to

Tania S. Smith ~ it's not her own research she is writing about, her articles are about research/studies that have been done by others, so i don't consider her 'an authority' no , but so far i have found that she correctly and accurately represents what is written in the studies / research that she writes about. They are all properly referenced so if something she writes is lacking in clarity, or we don't think it sounds 'right' , it's easy enough to look up the original study and check whether what she written/ or the numbers used are a true representation of what any study actually wrote in it 's text.

She has written about some of diogenes groups papers and he has recommend her articles to us on here, which gives me a good deal of confidence that her interpretations are acceptable to those who did the original work.

I consider her good at interpreting/ explaining complex data and concepts i would otherwise struggle to understand, and putting the information in a way i can 'see' it.

so for me she's "a trusted illustrator", not an authority in her own right.

in reply to radd

Also, if rtT3 can be such a problem and even keep people from getting well, why are members here not advised to require that test? After all, members are told to ask for both FTs, anti-TPO/anti-TG, vitamins and minerals, to be tested, so why not rT3? I have not seen a single administrator recommend rT3 testing,

helvella profile image
helvellaAdministrator in reply to

It is an expensive test.

Most tests are actually done in the USA (blood samples are posted over) which adds to delay.

Even in the USA there isn't an FDA-approved rT3 test. (The FDA know it is being offered and at least some documentation from labs says that. It simply has not yet been put forward and been demonstrated to be acceptable for approval. It might have shortcomings such as labs varying - and we have enough of that issue with the thyroid hormones.)

It can change quite rapidly.

There is little evidence that rT3 in itself is the cause of problems.

in reply to helvella

Thank you, Helvella, that was exactly my point!

radd profile image
radd in reply to

PC71,

'Also, if rtT3 can be such a problem and even keep people from getting well, why are members here not advised to require that test?'

I tend to agree with helvella .... it is an expensive test, takes ages to come back and is hugely difficult to interpret.

'I have not seen a single administrator recommend rT3 testing'

I don't think I have either but this it irrelevant as the forums space holds equal importance, but fyi I was previously one of this forums admin team years back 😉.

in reply to radd

`You were well over-medicated on T4 and TSH still within range! That is an odd result that alone warrants getting FT3 tested. I would also say this is paramount to ensure FT3 levels don't end up going really high.

We can end up with elevated RT3 when over-dosing T4 as the body simply can not use such elevated amounts. Elevated RT3 can prevent good usage of T3…`

What are you saying here? First, your FT4 is high so make sure that FT3 levels do not end up too high…implying that too much FT4 would be converted to excess free T3, presumably resulting in hyper-like symptoms? But then, in the next sentence, you seem to say that too much FT4 will be converted to rT3 which will then block free T3, causing hypo symptoms?

Surely, excess T4 cannot be converted to excess free T3 and excess rT3 at the same time?

radd profile image
radd in reply to

PC71,

Yes & no, for many reasons -

Firstly I myself found Armour T4:T3 ratio to be weighed in favour of T3, ie when I tried using Armour as my only means of replacement I had to have too much T3 to gain enough T4. My solution was to reduce Armour and add some Levo. I have stated to the O/P this was my own experince.

O/P states FT3 hasn’t been tested since long before introducing NDT. Many on the forum suffer impaired T3 conversion due to deficiencies, inflammation, genetics, etc ) but we can not assume anything without FT3 results, and we know hypo & hyper symptoms can present the same.

Although still under-medicated the O/P states she has become more symptomatic since adding another 1/4 grain Armour. That could be either too much T3 or high RT3, or both. Although the D3 enzyme can drive conversion of both concurrently, remember she could also be adding too much Armour T3, or have great conversion abilities, although unlikely because she advises of ME so a strong likely-hood of pre-existing elevated RT3 before adding anything.

A further complication is she indicates raising too quickly, isn’t split dosing meds and can’t find her iron test result. Low iron can be very prohibitive in allowing good tolerance of thyroid meds and NDT appears to be the least tolerant for many. There’s a a lot to unpick here and many possibilities. There is no black & white.

But then, in the next sentence, you seem to say that too much FT4 will be converted to rT3 which will then block free T3, causing hypo symptoms?

No! As explained above backed up with credible articles 😬, RT3 does NOT block FT3, but indirectly lowers levels. It is the D3 enzyme that metabolises FT3 into an unusable forms. Remember there isn’t just FT3 & RT3 but T2, sulphate, glucuronate, Triac, and urinary loss all of which will upregulate with dysregulated thyroid enzymes (deiodinases).

I like helping people but I’ve also had enough of this topic now. I actually groaned this morning 🤣 ... Shall we move on PC71 😊

in reply to radd

It´s not the first time I´ve seen you say "Enough said, let´s move on". Implicating the other party is being unreasonable and you cannot be bothered to continue the discussion anymore. I feel like a journalist trying to interview a politician.But I agree there is no use continuing this discussion. I don´t agree with you and never will, but I have better things to do with my time than continuing this fruitless discussion.

I honestly don´t care if God himself vouched for Tania; I maintain her articles are too difficult for most people to read. And I am saying this as a translator with 25 years of experience. If I had to choose between translating a German legal text (and believe me, those are difficult) and one of Tania´s articles, I would choose the German legal text...!

I am sure you are driven by a desire to help people, as are most people who post here.

If I could make a suggestion, it would be for you to sum up Tania´s theories in a document made available to members. A "Tania S. Smith for dummies" summary where you explain her theories in layman´s terms. I think that could be interesting for many members who, like me, find Tania´s articles too difficult to understand. That way, you would not have to answer the same questions over and over again.

radd profile image
radd in reply to

PC17,

🤔 .. .. You mix me up. I have never asked for ‘move on’ before, I have never needed too.

Just suggested in jest because we have taken over the O/P's post (sorry Blanche1960), and I have offered all I know but apologies if it came across as dismissive 😊. You could always start your own post if you have further questions.

With regard to summing up Tania’s articles in a simpler fashion, that is a great idea and one that has been suggested on the forum quite a few times. The difficulties are how to simplify an immensely complex subject and I am always mindful of what I put out is correct.

Edited 08.05.2022 - to advise offer withdrawn after it's been pointed out you state 'its a fruitless discussion' and 'don’t agree' anyway 🤷‍♀️.

in reply to radd

No, I am not mixing you up with someone else.I think many members would appreciate a reader´s digest of Tania´s articles. I do not think that one single person holds all the answers, but as least members would be able to judge for themselves. Not all of us have a background in science. A problem in this case is that Tania does not seem to write about her own theories, but rather she explains/interprets the theories of others, so it´s kind of a two-step approach...but I am sure you will find a way to sum up her most important findings in an easy-to-read, user-friendly version.

😊

in reply to radd

With regard to summing up Tania’s articles in a simpler fashion, that is a great idea and one that has been suggested on the forum quite a few times. The difficulties are how to simplify an immensely complex subject and I am always mindful of what I put out is correct.

Edited 08.05.2022 - to advise offer withdrawn after it's been pointed out you state 'its a fruitless discussion' and 'don’t agree' anyway 🤷‍♀️.

This was actually quite funny. I did not suggest a "Tania S. Smith for dummies" version as a personal favour to me, but as a way to help members who most likely struggle to make sense of her articles, especially since links to said articles regularly appear here on the forum.

Over the years, I have become more critical of the STTM, for the following reasons: (1) I find them too dogmatic ("NDT is best for everyone and T4 drugs are useless") and (2) they don´t seem updated when it comes to newer research. So they keep repeating myths which have since been debunked (rT3 dominance, T3 pooling), and then you see those myths perpetuated on other forums because many patients believe everything they say on the STTM. But, there is one fundamental difference between the STTM and Tania: the STTM is truly patient-oriented. If someone asks a question, the forum owner will reply herself, in a way that everyone can understand.

That, to me, is what being a patient advocate truly means, not just repeating things you have read in medical journals and articles. Of course doctors and researchers will vouch for that, but what about patients who have to read all that scientific stuff? To me, it´s not about Tania being wrong, but about her approach that I don´t find patient-oriented.

tattybogle profile image
tattybogle in reply to

"difference between the STTM and Tania: the STTM is truly patient-oriented. If someone asks a question, the forum owner will reply herself, in a way that everyone can understand ..To me, it´s not about Tania being wrong, but about her approach that I don´t find patient-oriented. "

purple cat . if you read to the end of any of thyroid patients canada articles , you will find a comments section.

it is possible to ask questions directly in the comments section if you want something clarified.... questions/comments are often answered in person on there ,in quite a lot of detail.. (and i believe there is also a ? facebook group , but i don't use that myself )

The replies on comments seem quite helpful .

As we all must realise as thyroid patients ~We are all different ~ i find her way of explaining the science very helpful .. so it's 'horses for courses' isn't it ?

You're obviously not a fan of her writing /thinking /illustrating style and don't find it helpful .. that's ok , but Thyroid Patients Canada is a useful resource for lots of 'unscientific' normal thyroid patients like me.

We all just have to find whatever help us most when we are trying to get our heads round how the science works . eg. you might find looking at the original full text of research/studies easier to understand if 'language' is the way your brain works ....whereas i'd get a headache .

But , if you're looking for very simplified concepts / guidance written for absolutely anyone to be able to understand , then thypatients ca, is probably not the best place for it ..that's clearly not what it's attempting to be. To 'dumb down' the work any further would be rather missing the point of it .. it is there as a visual aid to understanding extremely complex processes, for those who are interested in those complexities . It is not intended as a simple guide for those who are not.

in reply to tattybogle

Different people have different opinions of Tania Smith. However, I think it´s wrong to simply refer to her as "doctor" as that will most likely make people think she´s an MD. For a long time, I also assumed she was an MD simply because of her very scientific language. It was only yesterday I found out she is a PhD, because someone points it out on Paul Robinson´s website where he also referred to Tania as a "doctor". I think it would be more fair to present her as a "thyroid patient".

tattybogle profile image
tattybogle in reply to

I didn't think any of us here were referring to her as a 'doctor' ? ... pretty sure someone would soon point out that she's 'not that sort of a doctor' if they did .

ThyroidpatientsCa. website certainly doesn't give anyone the impression she's a 'Doctor' of that sort , there's no intention to deceive on there ... i got the impression you already knew she was not a medical doctor when you introduced us to her articles on the forum 8 months ago .. but perhaps you didn't. healthunlocked.com/thyroidu...

"Deiodinase Type 3, not RT3, plays the T3-blocking role

By thyroidpatientsca on November 14, 2019 "

someone commented the articles could be hard to get at first, but got easier if you kept at it , and you replied:

"True, you have to be patient enough to get through them...but they are backed up by thorough research and honestly seem more trustworthy to me than many articles by so called thyroid experts/functional doctors..."

Thyroidpatients.Ca website clearly states :

"Who we are

Our officers, directors, and leaders are dedicated patients who are volunteering to build momentum. Currently our board includes:

President and founder: Tania S. Smith (author of most of our website content)

Vice-president: Alexa Mahling Deskin

Treasurer: Sylvia Fader

Secretary: Lea A. Davis

Directors: Tania Pereira (and others TBA).

Beyond our board, we also have patients serving in a board Advisory Group, volunteer Facebook group moderators, and a Lab Test Action Group."

So if some people are accidentally misunderstanding her academic title of Dr. as meaning 'medical Doctor' just because she writes uses scientific language (which is surely unavoidable when writing about science in the depth/ precision that she does) ... then that is hardly due to any 'intentional deception' , surely ?

I can't speak for Paul Robinsons website obviously , but i've certainly never given anyone on here the impression she's 'a Doctor' .. (of any sort) ., and nor have i seen "Dr" used on here very often if at all ... most people seem to just write Tania /Tania Smith / Tania .S. Smith .

in reply to tattybogle

No, I didn´t know. I assumed someone who writes that kind of complicated articles and uses all that scientific language must be a doctor. Tania was referred to as "Dr" on another thyroid blog and someone pointed out that she is not. She is often referred to here with such reverence that it´s easy to think she really is some kind of medical expert. Add to this the fact that she is often referred to in the same context as Diogenes and it´s easy to get the impression she is a medical professional/researcher. Other thyroid patient activists, such as Janie Bowthorpe and Mary Shomon, are never referred to that way as far as I know.

I have come a long way in the past eight months...I have learned that not all is gold that glitters. It´s known as personal development. Or learning to think for yourself.

I have become more critical of things I read (here and elsewhere), and look into a person´s background and credentials before I decide to believe everything they say. The problem is that when you trust someone to have all the answers, it´s easy to stop thinking for yourself.

tattybogle profile image
tattybogle in reply to

Well yes .. a good idea to check someone's references/ motivations first ...... but it's never a good idea to trust anyone to have all the answers, or to believe everything they say ...... no matter how well referenced/respected they are. If you follow any group / person blindly , then you will be disillusioned eventually ~ best to do your own critical thinking from the start rather than believe in a guru.

But i really can't see what your issue with thypatients. ca is , except that you mistakenly thought she was doing the research herself and presenting her own theories .. when it's really just a careful dissection of previous research by lots of other people .

So there's really nothing of Tania's to 'believe' or 'not to believe' .. it is other researchers findings explained with the addition of pictures .... if you don't think something on there is accurate ... go to the source reference and , check it out independently for yourself . I have only found one or two questionable sentences, or inaccuracies in the presentation ,and nothing too serious.... but the amount of information on there is so massive , i've probably only read about 1/10th of it so far .

But i'm sure they would be only too pleased to hear from you if you find any .

SlowDragon profile image
SlowDragonAdministrator

You’re legally entitled to copies of ALL your blood test results and ranges

Come back with new post once you get copies of January test results

You need to take charge of your own testing and results

Test folate, B12 and ferritin levels yourself once year minimum

If any are low retest again 3-4 months after working on improving

Same applies to vitamin D….except you need to test twice year when supplementing vitamin D. May need higher dose vitamin D in winter

Optimal vitamin levels are essential for levothyroxine, T3 or NDT

Medics only test and treat deficiencies…..down to us as the patient to maintain OPTIMAL vitamin levels ourselves

Thanks that’s great will get them printed and post! Thankyou for everything!

Hi My thyroid was removed due to nodule and cancer back in 2015. I was put on Levo and after six months was so ill, anyway then I joined this site. I asked questions and followed the brilliant advice on here. I started myself on NDT thyroid s which I purchased myself.I took quite a few months to sort out the correct dosage. I now take 2.25 grains split into two. The first 1.25 at around 6am and the second at around 2pm. I weigh around 10stone and feel well. I also take vitamins which I have checked once a year with my blood test.

A the information is n this site it just takes a while to sort out. Good Luck.

Hi thanks for your reply! Sorry you’ve bern through it too so glad you managed to feel well again! Know you can’t say where you buy thyroid s from… but is it expensive and can I ask are you based in UK? Did you try Armour NDT before this? Seen on here it’s more potent than others but really not sure!

Thanks again

Hi the only time I tried Armour was when covid was on and I ran out of thyroid S. I have been on thyroid S no for over 6 years and it suits me fine. There are several site which you can purchase it the cost around £165 for 500 tablets. I will send you a private message on my supplier,

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