Thyroid Madness: I'm trying to get my act... - Thyroid UK

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Thyroid Madness

Easylover profile image
39 Replies

I'm trying to get my act together! I find it very hard, when like someone on this site said, I forget who, that there are not a lot of studies done on NDT natural desiccated thyroid hormone porcine. My issue, reliable sources, who themselves don't take NDT, seem to think it should be divided into doses, 2 or 3 during the course of the day to minic what the body does with T3. First of all. T3 and NDT are nothing a like. Unless these thyroid authorities have taken NDT and can compare with what happened to them taking T3, how would they know?

I'm tired of it. I can't do what others do. Waveyline helped a lot because of sharing her own experience. I'm frustrated and want to share a theory I have developed from something GreyGoose said.

If the T3 cells have to be fully saturated to benefit the body, then why can't a one time dose of NDT DO THAT? As far as my understanding, NDT depending on the brand, is 9 mgs T3 and 38 mgs T4 per grain. I take 4 grains, so that is 36 mgs of T3 in one shot if I do it all at once in the morning. This is not including the circadian rhythm to heighten cortisol.

. I want to scream. According to the Internet, I can not get a saliva test w/o a prescription in California ¿ Besides that, I want a quick fix. Good luck, when most doctors know less than we do.

. Some experts act like well the 38mgs of T4 in NDT will convert to T3, NOT necessarily if you're a poor converter.

I can't do it anymore. I just wanted to put my thoughts out there and others comment if they wish.

God bless everyone! Easy.

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Easylover
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Easylover profile image
Easylover

IM FINDING IT HARD TO STICK WITH WHAT EVER DOSING CHANGES I MAKE BECAUSE OF THE FATIQUE FACTOR.

greygoose profile image
greygoose in reply to Easylover

What do you mean by THE FATIQUE FACTOR?

I'm frustrated and want to share a theory I have from something GreyGoose said. If the T3 cells have to be fully saturated to benefit the body, then why can't a one time dose of NDT DO THAT?

Pretty certain that's not what greygoose said. I said the receptors of some people have to be saturated - or flooded would perhaps be a better word - to get just some thyroid hormone into the cells. It's called thyroid hormone resistance, and can be seen in people who have been undiagnosed/unmedicated/undermedicated for a long time. In my case it was nearly 50 years. So, I take 75 mcg T3 in one go to flood the receptors - used to have to take more but I'm improving! :)

And, of course, a one time dose of NDT can do that. You're right, a lot of people who don't have thyroid problems - or even know that much about hypothyroidism - pontificate about what we should and shouldn't be doing. We even get that on here, occasionally, I'm sad to say. It's rare but it does happen (even happened the other day). So, we have to listen to those that not only know something about how it all works in theory, but also how it worked in practice for them. Be careful who you listen to.

I had a doctor who had Hashi's, and put me on Armour, and he said you don't have to split the dose, take it as best suits you. I took it all in one go. But, in the end, no way at all suited me because it was too much T4 and not enough T3. So, now I'm on T3 only. The trouble with most doctors is that whilst they might know something about how a healthy thyroid works, they have no idea what happens to it, and the body, when it's not healthy and doesn't work! They try to model their treatment either on an anatomy text book, or a euthyroid model. And it just doesn't work for a body drastically altered by being deprived of thyroid hormone for long periods. And, they don't have the intelligence (I'm always amazed by how dumb some doctors can be!) to allow their patient, who actually lives with the disease, to experiment to find what works for him/her.

So, be like Franck Sinatra and do it your way. If you want to take all your NDT in one go, to see what happens, do it. It might suit you, it might not, but unlikely to kill you. As my mother always said: when in the surgery smile sweetly and agree, then go home and do as you damned-well please! But, be warned: there are no quick fixes. However much we might wish for one, that is not how hormones work! We have to be in for the long-haul and patience is the key. But, taking back the power into your own hands can work wonders. It's so good for the self-esteem. :)

Easylover profile image
Easylover in reply to greygoose

That was an awesome reply! And you made me laugh. Thank you so much for your wisdom

greygoose profile image
greygoose in reply to Easylover

You're welcome. :)

Easylover profile image
Easylover in reply to greygoose

I'm always tired. I drink a lot of coffee n tea. I keep reaching for something to eat thinking it will give me the energy n stamina I need. I had added an extra grain of thyroid because Armour crumbles when you try to split it and I was taking 2 of the 3 doses on a full stomach. I don't know. I don't think I was over medicating because my Temps never rose to where they should and my blood pressure n heart rate seemed good. But I did back off yesterday. I was taking 2 Armour at 6 am, 2 Armour at 10 am on a full stomach and 1 Armour at 2pm on a full stomach. Thank you GreyGoose, Easy. THANK YOU ANSWERING!

greygoose profile image
greygoose in reply to Easylover

Well, taking it on a full stomach would probably have affected the absorption of the T4, but the T3 is an unknown factor. Nobody really knows how much its absorption is blocked by food. We usually advise people to take it on an empty stomach just to be on the safe side.

Don't you ever get labs done? For thyroid and for nutrients? They would give us a better idea what is going on. You could be low in iron/ferritin or something. That would make you very tired.

DippyDame profile image
DippyDame in reply to Easylover

I'm totally with greygoose on this, she helped me hugely when I arrived on the forum a number of years ago....

I had been wrongly diagnosed and wrongly medicated for about 50 years until I could barely function. Medics were clueless so I eventually took control, did my research and discovered I have a form of Thyroid Hormone Resistane.(RTH)

T4 wasn't helping me because it turns out I don't convert T4 to T3 at all well. I have the genetic polymorphism that impairs conversion, it is inherited from both parents which science shows results in much poorer conversion than if inherited from one parent.

T4 had to go!

So, I have the combination of poor conversion and RTH. My cellular T3 was low and I was suffering the consequences. Luckily I discovered this before my body started to shut down....or maybe it had!

That resistance prevents ( some of) the T3 from entering the cells and attaching to the T3 receptors . Only when this happens does the T3 become active. The inactive hormone remaining in the serum will eventually be metabolised and excreted.

To overcome this I initially needed a huge dose of T3 (212.5mcg) That large dose acts as a battering ram against the cell walls and the force allows at least some of the dose to enter the cells, reach the nuclei, attach to the T3 receptors and fulfil it's function.

The greater the resistance the bigger the dose needed.

Low cellular T3 = poor health

There are no blood tests to check cellular level of T3 instead we have to monitor the old fashioned way by symptoms and signs....we listen to our body.

There is no quick fix....but there is a fix!

My medics had no idea what was wrong and suggested all manner of ailments like fibromyalgia, chronic fatigue syndrome, IBS.....all syndromes ( collections of symptoms) but no specific diseases. I wasn't convinced! I had numerous treatments over the years to no avail and was really struggling.

The endo I saw was adamant that I did not have RTH and was not convinced I needed T3....wrong on both counts!

When I eventually obtained and used T3 which began to turn things around my then GP panicked and thought I was killing myself. I wasn't convinced!

To provide the force needed to get enough T3 to the T3 receptors I need to take it in a single dose....splitting the dose didn't achieve that for me.

We are all, different and need different treatments there is no one dosing protocol that suits everyone....though medics seem to think there is.

We are human beings with all the variations that involves so unlike machines with instruction books, we cannot all be calibrated to a set point....until medics understand this a cohort of thyroid patients will continue to suffer.

The majority of hypothyroid patients respond well to T4/ levothyroxine.....those of us that do not frequently struggle!

Long story, short. I explained in detail why I took the decision to self medicate with T3 and that instead of killing me, a large dose of T3 was starting to cure me. They now see the results and leave me in control of my thyroid treatment! Unlike many medics they are open minded!

But, their hands are tied behind their backs by the guidelines they are expected to follow and to treat me as I treat myself would be to risk their licence to practice. It is madness!

I'm now able to function on 100mcg T3 which I take in a single dose ar bedtime.....but the NHS won't support this. I can only guess that some of the previously dormant T3 receptors have ' revived" resulting in less need for the hefty push the big dose provided

To come to your phrase The FATIQUE FACTOR ....if cellular( active) T3 is low the body's metabolic rate slows down with less energy produced....we become fatigued.

I'd sugest your fatigue points to low cellular T3.

You ask...

If the T3 cells have to be fully saturated to benefit the body, then why can't a one time dose of NDT DO THAT

It's the body's cells that need to be saturated with T3.

One dose won't do that unless the T3 dose is adequate for the job!

In your shoes I'd experiment and take the NDT in a single dose at least an hour away from food and drinks to improve absorption

Some, for example, take it at bedtime, some in the very early morning 4/6am am and some take it later in the morning....whatever suits.

You take 4 grains which is 36mcg T3 plus 152mcg T4....if your conversion is robust that T4 should generate some more T3

If you don't try you'll never know...if it doesn't work you can try alternative dose/ timing because basically it's trial and error

Be aware of signs of overdose....for example..racing heart rate, hand tremors, heat intolerance

The dose required depends how much T3 your body needs to "force" a sufficient amount into the nuclei of the cells to reach the T3 receptors

Do you know how well you convert T4 to T3? High FT4 with low FT3 signals poor conversion

Have you optimised vit D, vit B12, folate and ferritin to support thyroid function

The truth is that it's a hard road to travel, it takes time and determination to march to the beat of your own drum....but we need to be thyroid mavericks and give up listening to the naysayers and those who have not walked in your shoes!!

Sorry....it's a bit of a rant but hope it might offer a little encouragement. You are not alone here....just ask!

Easylover profile image
Easylover in reply to DippyDame

Thank you. That was very well said. I am in the US and am getting ready for a trip. I will answer all these relies that I APPRECIATE as I go along. Wish I could self medicate w T3...Maybe God will find a way! Bkessngs to you Dippy. It all helps. THANK YOU AGAIN. Easy for easy does it.

Gillybean1 profile image
Gillybean1 in reply to DippyDame

Hi DippyDame,

May I ask, how did you know it was RTH ? Is there a test as such? And is that a different test to DIO2+ ?

Every best wish, G

DippyDame profile image
DippyDame in reply to Gillybean1

Of course...we're here to try to answer questions

Maybe easiest to read my bio....it's all there

No regular test for RTH but there is a genetict test to check for mutations in the T3 beta receptor which causes RTH...I think it's only done at Addenbrooks....and rarely! There are other causes of RTH....not sure what caused mine

No connection with the Dio2 test

Gillybean1 profile image
Gillybean1 in reply to DippyDame

Thank you for taking the time to reply, and so swiftly. I will read your bio and Addenbrooks .

Every best wish to you DippyDame, G

Gillybean1 profile image
Gillybean1 in reply to DippyDame

Hello DippyDame,

I have just read your bio, you give me great hope, thank you. I too had a nasty double whiplash after a car accident shunt from stationary to 30 ft forward into concrete and 12ft shunt back, when all my stuff kicked off.

I will look a little deeper now into RTH before my time runs out. Like you, Ive listen to supportive medics, kind medics, ones with no clue or care =they dont know. Years have past, I have to try again to solve this.

Well done for getting there, and sharing your story. Kind regards G

Easylover profile image
Easylover

I appreciate that. My appt is Jan 13 but no guarantees at this low budget clinic but I did have good luck with the last nurse practitioner. She moved to the coast 😌. Well, praise God I know what to ask for because of this site. You are all very kind!

waveylines profile image
waveylines in reply to Easylover

Easy lover. It is frustrating and can be confusing. If you normally take 4 grains then taking 6grains was a heck of a big hike upwards in one go. I was a bit worried when I read that. You do have to find what works for you as everyone is different. What I have learnt over the years is you have to be patient (not my strength) and you have to be methodical (I've improved!) . Blood tests help but even they can't tell you what getting into the cells.

Do keep a brief daily diary. With what you are taking not only thyroid tablets like ndt but any other meds, vitamins minerals, your temp and pulse first thing and a little summary of how you feel, signs and symptoms. If you can get bloods done then a copy of those included helps too. Over time this helps to spot patterns.

The debate on how to take NDT is a wide one. Many like me take it in one go first thing. The T3 content has a much slower uptake rise fall then Liothyronine. Splitting does help for some people. It's all very individual. Empty tummy is a must really for thyroid hormones to get the best absorption.

As you cant get frequent blood tests I'd try to avoid complicating matters by taking NDT with food.

Lastly make changes one at time. And you need to keep to that change for several weeks to get the full benifits. The tortoise always wins not the hare in this race.

I know it's a lot to get your head around.

The greatness of this forum is you can share and get many wise heads feeding back. You can then pick what you think applies to you. Eg if you find splitting NDT makes no difference don't do it. If you find taking NDT first thing in one go do it. There IS no one way. Just the pathway that works for you.

Easylover profile image
Easylover in reply to waveylines

Thank you Wavey, no it's 5 grains not 6 and I actually am ok. Just racing the turtle. Love your reply!!!

" Blood tests help but even they can't tell you what getting into the cells. "

I am keeping record. Thanks for your encouraging words. They help!

Easylover profile image
Easylover in reply to waveylines

I wanted to say thank you caring about me and I didn't know to keep track of vitamins so I will.

Easylover profile image
Easylover in reply to waveylines

I've decided to go back to my old routine ..which is basically what you do,, all 4 grains first thing morning, wait hr then eat! Thanks Wavey, easy

waveylines profile image
waveylines in reply to Easylover

Everyone is different but as you've found out it worked better in one dose then it's a no brainier. 😊😊

Brightness14 profile image
Brightness14

The first thing I want to say is that the T4 in NDT is different than taking Levo thyroxine.

I take 2.25 of NDT that is 39 x 2.25 of T4 = 87.75

and 2.25 of NDT that is 9 x 2.25 of T3 = 20,25

My perfect blood test results for T3 are always above 6 to feel well. range (3.10 - 6.8)

I have worked out that I require 55 T3 daily to feel well.

The T4 is converting to about 87.75 x 40% i.e. 35 of T3.

Most people of here require more but I don't have any gut problems or a thyroid.

What dose are you on and for how long?

Easylover profile image
Easylover in reply to Brightness14

Thank you. I am going to have to re read all of this. Thank u for your time!

helvella profile image
helvellaAdministratorThyroid UK

I don't remember anyone saying that the T4 in NDT 100% converts to T3.

If all 38 micrograms of T4 in one grain of NDT converted to T3, you would end up with 47 micrograms of T3!

====

Using the assumption 100% of the T4 converts to T3 we get 47 micrograms of T3:

(9 + 38 ) = 47 micrograms of T3

Using the "standard" claim that T3 is somehow four times as potent as T4, and assuming 100% of the T4 converts to T3, that implies a dose equivalent to 188 micrograms of T4.

4 * 47 = 188 T4 equivalent

====

Using the assumption one third (33%) of the T4 converts to T3 we get 21.6 micrograms of T3:

(9 + 12.6) = 21.6 micrograms of T3

Using the "standard" claim that T3 is somehow four times as potent as T4, and assuming 100% of the T4 converts to T3, that implies a dose equivalent to 86 micrograms of T4.

4 * 21.6 = 86 T4 equivalent

====

Using the assumption one quarter (25%) of the T4 converts to T3 we get 18.5 micrograms of T3:

(9 + 9.5) = 18.5 micrograms of T3

Using the "standard" claim that T3 is somehow four times as potent as T4, and assuming 100% of the T4 converts to T3, that implies a dose equivalent to 74 micrograms of T4.

4 * 18.5 = 74 T4 equivalent

====

The reality reported by many who take it is often closer to one third of the T4 being converted to T3.

The standard equivalence charts for calculating equivalence (and these are widely accepted to be a very poor guide) claim one grain is about 100 microgram T4 equivalent.

But applying simplistic formulas to dosing any thyroid hormone medicine(s) is a poor approach. Everything about them is artificially simplified and based on assumptions which are known to be incorrect.

I agree they can help with some sort of pointers towards dosing.

17:11

Just made some corrections - too many typos!

Easylover profile image
Easylover in reply to helvella

That was absolutely mind boggling. I will study it later. Thank you for your info!

TSH110 profile image
TSH110 in reply to helvella

For me 125 Levo seemed about the same as 1.25 grains of NDT except the latter actually resolved symptoms but the former did not. If I took more Levo I felt very weird and agitated so as it went it was as good as it was ever going to get on 125. So I’d agree that 100 is about the same as 1 grain except it is more efficacious presumably because of the T3.

If it resolves symptoms that’s what really matters. I was lucky in that getting there on NDT was simple i slowly titrated with the tpa guide (which I know you have issue with, but the titrating protocol is sound) and at 1.25 grains I felt myself again and knew it was the right dose for me. I had been on Levothyroxine for two years feeling dreadful but it may have helped make the transition to NDT go smoothly.

Easylover profile image
Easylover in reply to TSH110

Why don't you take NDT then?

TSH110 profile image
TSH110 in reply to Easylover

I do - thyroidS 1.75 grains and 3mcg T3

waveylines profile image
waveylines in reply to helvella

Helvella am confused I really don't see how 1 grain of NDT could ever equates to 188mcg of T4? 9mcg of T3 x 4 = 36mcg of T4 + 38mcg of T4 = 74mcg of T4.Ahhh see you've corrected this further down. 🤣😍.

I agree it's all hypothetical and it all depends on each person's conversion rate....and that's assuming it converts all at once

helvella profile image
helvellaAdministratorThyroid UK in reply to waveylines

I was trying to illustrate how absolutely ludicrous any claim of 100% conversion is! Even the NDT conversion charts don't claim that and they are definitely optimistic (or pessimistic if you are looking at them from the other direction).

waveylines profile image
waveylines in reply to helvella

Aaah I see..... Couldn't agree more Helvella. The proof is in the pudding as the saying goes. 👍😊

Brightness14 profile image
Brightness14

I did forget that you are taking armour which is 38 of T4, sorry.

You are taking loads of armour and some with food, you might not absorb it then.

Why not try 2 grains am one hour before any food and another 2 grains in the afternoon one hour after eating.

You do need good levels of vitamins and minerals for it to work well.

Usually NDT tends to work faster than Levo. Test after 6 weeks on the same exact dose

and then post the results on here with the ranges. Good Luck.

Easylover profile image
Easylover in reply to Brightness14

Ok thanks!

FallingInReverse profile image
FallingInReverse

waveylines

Why do you suggest tracking pulse and temp daily?

(Ps DippyDame I think we should all print up what you said where we can see it every day: “There is no quick fix....but there is a fix!” It’s my new favorite idea - full of the principles of hope, hard work, discipline and patience, and I am sure I will quote you often!)

Easylover profile image
Easylover in reply to FallingInReverse

Well, according to Paul Robinson, that is how you tweek your T3 doses on his blog signs n symptoms.

waveylines profile image
waveylines in reply to FallingInReverse

In untreated or poorly treated hypothyroidism base temperature lowers and pulse rate slows. It used to used as one of the guiding signs before thyroid blood tests came along. I still use this at times, alongside blood tests. It's great to use in between tests and is another factor to add to the whole picture.

DippyDame profile image
DippyDame

I monitor weekly now but it's to make sure resting heart rate isn't too fast and there are no hand tremors or intolerance to heat which are signs of overmedication.

"Listen to your body it will tell you if something is wrong"....that was the mantra of a wise old medic friend of mine, which I quote often.

Easylover profile image
Easylover in reply to DippyDame

I slept 10 and half hrs¿ absolutely exhausted ...its only 9:18 am got up at 630...I know I'm not over medicated. Thank you for responding. I didn't know who to tell. I have to decid3 what I'm gonna do.

Easylover profile image
Easylover in reply to DippyDame

It was 9 and a half that's ok. So tired I can't count🤣

TSH110 profile image
TSH110

I used to split mine but over time I could get the same result with one dose so I think the t3 saturation idea may have merit. I take mine at night now I used to take it am. Sleeping was a little tricky at first but it soon righted you get a higher effective dose taking it at night apparently.

4 grains is a hell of a whack tho. I needed 1.25 for years but had to up it to 1.75 and I now add in a tiny amount of T3, but we are all different.

Easylover profile image
Easylover in reply to TSH110

So you are tak8ng NDT w a little T3?

TSH110 profile image
TSH110 in reply to Easylover

Yes, as mentioned in reply above

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