Cortisol levels and ability to tolerate T3/T4 - Thyroid UK

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Cortisol levels and ability to tolerate T3/T4

TiggerMe profile image
TiggerMeAmbassador
75 Replies

Cortisol is fascinating stuff!

I was just reading an article about cortisol levels being strongly linked to the bodies ability to cope with the addition of T3/T4... also how low T3 likely leads to low cortisol.... and round we go...

I've been quite lucky that I have been able to add in T3 without any real problem... though maybe by knowing exactly where I'm at with my cortisol levels might allow tweaking of optimal times for taking my T3/T4?

I'm about to look into my cortisol levels properly and get the saliva test, I notice they now offer 4 or 6 in the 24 hours test kit... is it worth paying for the extra?

Blue Horizon at £115/£125 being considerably dearer than Regenerus £85 (before discounts)

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Hedgeree profile image
Hedgeree

Hi Eeyore100,

Do you possibly have a link to the article?

I think that it would be an interesting read for quite a few members having difficulty tolerating Levothyroxine and/or T3.

Best wishes.

TiggerMe profile image
TiggerMeAmbassador in reply toHedgeree

👋I'll drag humanbean in too, as she has a better understanding of cortisol 🤗

hormonerestoration.com/Cort...

Hedgeree profile image
Hedgeree in reply toTiggerMe

Brilliant! Thank you

TiggerMe profile image
TiggerMeAmbassador in reply toHedgeree

It's a long one!! 🤗

TiggerMe profile image
TiggerMeAmbassador in reply toTiggerMe

Henry Lindner MD seems to talk our kind of language 👏

Hedgeree profile image
Hedgeree in reply toTiggerMe

Very much so!

humanbean profile image
humanbean in reply toTiggerMe

I can give you a personal anecdote, which you may have read from one of my replies before... When I first started Levo I couldn't tolerate it at all. I also struggled with tolerating NDT and T3 when I tried them.

I discovered from a four-part saliva cortisol test that my cortisol levels were high. Samples 1, 3 and 4 were over the range and sample 2 (late morning) was 90% through the range.

I tried taking my first thyroid hormone dose at the same time as Sample 2 was produced and found I had far fewer problems with it.

So, yes, cortisol is an essential part of the process of tolerating thyroid hormones, but the amount of cortisol needs to be right. I gather from other members who've mentioned low cortisol that it can cause problems for them too.

In my early days of taking T3 I would cut my T3 tablets into 3 or 4 or 5 (more or less reducing it to crumbs sometimes). Then I would take the crumbs from late morning onwards. I found a means of reducing my high cortisol (by taking Holy Basil, but it works very slowly - I've been taking it for years while slowly reducing dose) and I had less and less problem tolerating thyroid hormones as time went on.

I now (10 years later) take Levo + T3 every morning as soon as I wake up then don't think about it for the rest of the day.

I should mention that I have several health problems, not all related to thyroid, so my experience might not be relevant to others.

TiggerMe profile image
TiggerMeAmbassador in reply tohumanbean

Thank you Bean, I think this guy speaks a lot of sense, so much so I have to read it over and over to try and absorb! 😬

Mividauk2 profile image
Mividauk2 in reply tohumanbean

Which cortisol test did you take, please?

humanbean profile image
humanbean in reply toMividauk2

If I was doing a cortisol test today I would use this one :

regeneruslabs.com/products/...

SeasideSusie profile image
SeasideSusieRemembering

Eeyore100

Blue Horizon discount is 30%. There is no discount on the Regenerus test.

The 4 point saliva test with BH is £115 less 30% which I make £80.50.

I have only ever used Regenerus so can't comment on the BH test.

The Regenerus test also includes DHEA as well as cortisol and this is important as it is used to determine the stage of adrenal fatigue (if present). The BH test doesn't test DHEA, only cortisol with both the 4 and 6 point test.

TiggerMe profile image
TiggerMeAmbassador in reply toSeasideSusie

Thanks SS, that's what I needed to know 🤗is that the Diurnal test as it doesn't mention DHEA? Or is it the CAR one which make comment about DHEA?... presumably once I start testing I'm going to have to do it regularly? How often do they recommend?

Edit or is it the Adrenal Test £88?? Now I'm confused again 😬

Pearlteapot profile image
Pearlteapot in reply toTiggerMe

regeneruslabs.com/products/...

It’s the adrenal test I think. That’s the one I did and many people here do.

TiggerMe profile image
TiggerMeAmbassador in reply toPearlteapot

Can I ask what sort of results did you get? Are you low which might be why the reaction to adding T3?

Pearlteapot profile image
Pearlteapot in reply toTiggerMe

mine was low normal and I was very tired and hadn’t slept when I did it so thought it was probably distorted. Might do it again. T3 setting for me now I think, heart rate better. But reading around here I saw that some like to take their t3 at night as it makes them sleepy rather than stimulating. Still trying to understand.

TiggerMe profile image
TiggerMeAmbassador in reply toPearlteapot

Not too out of whack then... It seems to vary with people how they absorb T3, for me it's fast acting, it is a bit of a moving target as it takes a while to work on a cellular level and re-awaken all the receptors which can alter things 🙄This suggests that as our T3 rises so will our cortisol 🤞

Pearlteapot profile image
Pearlteapot in reply toTiggerMe

that’s the bit that confuses me. On the one hand insufficient T3 is hard work for the adrenals leading eventually to adrenal insufficiency or hypocortisol and low cortisol indicates not to take T3 (because why?). Yet on the other hand increasing T3 by supplementation allows adrenals to recover and cortisol to rise naturally, a win win. This is my current slightly addled understanding. Early morning exercise good for adrenals too. It’s not really early anymore but I’m going for a Boxing Day walk now. Cheers

turquoisea7 profile image
turquoisea7 in reply toPearlteapot

You're asking precisely the question I am deeply confused about and can't seem to find an answer to, if you get anywhere please let me know! low cortisol, difficult to tolerate T3; take T3, more stress on adrenals, but then adrenals can recover as FT3 rises so doing less work?....yup, very confusing. do you just force the T3 in then until things settle down?

TiggerMe profile image
TiggerMeAmbassador in reply toPearlteapot

I'm thinking it is why some people have to add in T3 really slowly in small amounts to very gradually bring their levels up, whereas others can add in 10/20mcg with no issues?

Looks lovely out there, I'm being harassed by dogs too 🤗

SeasideSusie profile image
SeasideSusieRemembering in reply toTiggerMe

It's the one Pearlteapot has linked to

ADRENAL FUNCTION (5)

Code HOR05

click on "Analytes" and it shows what they test.

I did it fairly regularly when I was supplementing with an adrenal supplement but haven't done it for a year now.

TiggerMe profile image
TiggerMeAmbassador in reply toSeasideSusie

Pearlteapot Thank you both.... having a blonde moment there.... I've been reading about cortisol assumed it would be a cortisol test??? Adrenal it is 🤗

SeasideSusie profile image
SeasideSusieRemembering in reply toTiggerMe

The adrenals produce cortisol plus other hormones. The Regenerus test measures cortisol plus DHEA so calls it an adrenal function test, BH only tests cortisol so call theirs a cortisol test.

TiggerMe profile image
TiggerMeAmbassador in reply toSeasideSusie

That's what threw me as Regenerus have several cortisol tests too but the adrenal one doesn't pop up if you search cortisol? 🙄

SeasideSusie profile image
SeasideSusieRemembering in reply toTiggerMe

It's the one that's linked to on the Thyroid UK link to Regenerus for an adrenal test

thyroiduk.org/help-and-supp...

TiggerMe profile image
TiggerMeAmbassador in reply toSeasideSusie

I've not seen any mention of their working days over this period?

SeasideSusie profile image
SeasideSusieRemembering in reply toTiggerMe

I've not seen any mention of their working days over this period?

Regenerus? It can take up to 3 weeks during normal times anyway because it's sent to the US to process. However, I have had the result back within a week at times.

There are two options to return the samples

1) Courier pick up from your home, and they give details in the kit.

2) Royal Mail Special Delivery Guaranteed Next Day - this is cheaper than the courier option and obviously must be timed around strike days at the moment, it is the only Royal Mail service that has any type of guarantee of delivery at the moment as Special Delivery takes precedence over any other method.

If I was considering this test at the moment I think I might delay it until things settle down with all these strikes.

TiggerMe profile image
TiggerMeAmbassador in reply toSeasideSusie

Sage advice 🤗 I think I'll order one in the new year and then pick my timing, what with America now resembling the Arctic... do they have a time limit for using?

SeasideSusie profile image
SeasideSusieRemembering in reply toTiggerMe

I don't know of a time limit. There is no reagent in the tubes that would have a time limit on them like with the blood sample tubes. I've always used mine within a month or so of receiving the kit so have never had to question whether there is a time limit.

Hedgeree profile image
Hedgeree

Hi Eeyore100,

If you do decide to do the saliva test make sure to read through the instructions a few times.

I almost messed mine up as I very nearly forgot about caffeine in tea as I was just about to make myself a builder's brew strong cuppa when I remembered no caffeine on the day you're doing the test.

TiggerMe profile image
TiggerMeAmbassador in reply toHedgeree

Thanks, top tip.... there's always a knack to these bloomin tests 😉

Delgor profile image
Delgor

Just as a thought Eeyore - I couldn't do my test as I supposedly have a very dry mouth and couldn't make the required amount of saliva no matter what I did so maybe have a practise at doing this before the actual test as once you begin you need to carry on and complete it.😢

Hedgeree profile image
Hedgeree in reply toDelgor

Hi Delgor,

I think if you make a mistake you can rinse the tube out and start again on another day?

I'm sure I've read that before on the forum? Possibly in a reply on a post from SeasideSusie?

TiggerMe profile image
TiggerMeAmbassador in reply toDelgor

Oh really.... no pressure there then, I imagined you put something like a mini tampax in your mouth 🤣 it's just a case of drooling in a pot is it?? 😳

SeasideSusie profile image
SeasideSusieRemembering in reply toTiggerMe

With the Regenerus test you collect saliva in a tube, some other lab's tests use the "tampon" type method which isn't a particularly pleasant way to do it. And yes, with the Regenerus test you can rinse the tubes out and air dry them then do the test another day - of course all samples must be collected on the same day.

Delgor profile image
Delgor in reply toSeasideSusie

Thank you Susie as I obviously didn't make myself clear (nothing new) as yes I did try again the next day but still couldn't make enough saliva to fill the tubes but knew they had to be collected on the same day.

Hedgeree profile image
Hedgeree in reply toDelgor

Sorry Delgor! No you explained very clearly that you were having issues with collecting enough drool.

I just wanted to make sure others knew that if they'd made a mistake they could rinse out the tube and start again.

Best wishes.

Delgor profile image
Delgor in reply toHedgeree

Sorry Hedgeree, I think I've got a bit mixed up with all the various posts that have been flying back and forth and never answered your's. You've no need to apologise I assure you - I definitely have episodes whereby I know what I'm meaning to say but it doesn't always come across clear to others - eek!

Delgor profile image
Delgor in reply toTiggerMe

Obviously I'm no good at drooling into a pot as I did try again the next day by washing out the tube and still couldn't get up enough "drool" and as SS has confirmed all samples have to be collected on the same day which I knew wasn't going to happen. I'm certainly not trying to put you off from doing the test and sorry if that's what I made you feel - when things aren't right we need to check out everything but if you are already taking adrenal supplements how will you ever know what your true status is - isn't that similar to going gluten free before having coeliac's test? 😙

TiggerMe profile image
TiggerMeAmbassador in reply toDelgor

😅 not put off just daunted as usual with any performance test! I guess I will take the test having stopped the supplements for a week? As with everything one test is never enough 🙃

Canu profile image
Canu in reply toTiggerMe

I remember reading somewhere that you need to stop all adrenal supplements for at least two weeks before testing cortisol levels.

TiggerMe profile image
TiggerMeAmbassador in reply toCanu

Thanks Canu, sounds sensible

Milkyway88 profile image
Milkyway88 in reply toCanu

it says to ‘check’ supplements including inhaled substances. Assume that would mean steroids for asthma. That would be dangerous surely? I did phone them but they just advised going through my Gp or my functional doctor ( don’t have one of those) . Anyone else asthmatic and wanting to do cortisol testing?) Hope that isn’t hijacking the thread .

TiggerMe profile image
TiggerMeAmbassador in reply toMilkyway88

All useful knowledge thanks

CoeliacMum1 profile image
CoeliacMum1 in reply toMilkyway88

I have no idea as never had saliva test regarding asthma medication but 7th I have private Synacthen test being done and this is looking at Addison’s.

I can take my ventolin but I’m to come off Fostair for a week before as it’s a steroid drug and I’m still ok with my hrt.

I had regular cortisol blood test and absolutely fine but I’ve read these aren’t as accurate as saliva.

Hope this doesn’t confuse things further but something I’m know/aware of.

Delgor profile image
Delgor in reply toTiggerMe

As you rightly said one test is never enough but it is a very good article and a lot of it makes good sense. When I was first blood tested for cortisol it was borderline low and so I took a course of herbs which did bring it up when I got retested but I then found out from GG that this may well have masked the problem so obviously tried the saliva test and was frustrated that I couldn't do it. It certainly sounds good for using in conjunction with taking meds and yes I remember HB doing this😁

SeasideSusie profile image
SeasideSusieRemembering in reply toTiggerMe

TiggerMe

When I first did this test I was using a cortisol lowering supplement and progesterone cream that a practioner had put me on. I contacted Regenerus to see whether I should stop using it before testing and their reply was

The items you mentioned will not effect the results.

Your samples will record your current levels of Cortisol and DHEA as they stand with any supplementation you are taking.

The instructions that come with the kit say

Topical Hormones (oestrogen, progesterone, testosterone, DHEA)

Last dose prior to collection should within a window of 12-24 hours before collecting your first sample.

Sublingual Hormones

Last dose prior to collection should bge within a window of 24-36 hours followed by two full glasses of water to cleanse the tissues. Then collect the first sample.

Do not apply topical or use sublingual hormones through the entire day of salive collection. This will contaminate your sampel and test results.

Cortisol/Glucocorticoid Supplementation

Consult with your provider for instruction if you are taking a cortisol supplement for adrenal support (or any other glucocorticoid for medical reasons). Note: certain medications, including hydrocortisone creams and asthma inhalers, contain cortisol. To evaluate your natural cortisol production it is recommended to stop using cortisol containing procucts 5 days prior to sample collection. Consult with your provider prior to stopping cortisol containing medications.

TiggerMe profile image
TiggerMeAmbassador in reply toSeasideSusie

Cold turkey day hmmm

turquoisea7 profile image
turquoisea7 in reply toTiggerMe

just to say with your thyroid meds, and doing this test - i was dosing some at 4pm when I did mine and checked with them, they said fine so long as you leave an hour afterwards and wash your mouth out. i took my am dose after the first drool.

Pearlteapot profile image
Pearlteapot

How are you planning to use the info to tweak?

TiggerMe profile image
TiggerMeAmbassador in reply toPearlteapot

He said so many interesting things! I need to re-read but I thought it suggests some benefit in finding your cortisol rhythm and matching your T3/T4 dosing to create a better balance and uptake or possibly supplementing if needed?

Hypocortisolism is unmasked when a person is given thyroid

hormone because greater thyroid levels/effects increase both the metabolism of cortisol and the need for cortisol, thereby

worsening the relative cortisol deficiency. With time I realized that T3 and cortisol have very powerful and complex interactions--

they both counteract and enable each other's levels and effects. Oral T3 stimulates cortisol secretion, explaining why some

persons felt better immediately with starting NDT. Hypocortisolism is the explanation for most anomalous responses to

T4 or T4/T3 therapy.

LucyYoga profile image
LucyYoga

Hi Eeyore!

Isn’t it so interesting re cortisol. I’m looking into similar isssues as you.

I have only started medication 6 weeks ago and my first port of call has been NDT. I’ve been struggling a bit hence decided to see how much of an issue cortisol is for me and if that is what is contributing to the problem. I’m certain im in stage 4 adrenal fatigue and that my cortisol is going to be almost non existent.

I was recommended the regenerus one that is 5 point diurnal test which I’ve ordered and will do shortly. That tests for DHEA too.

I’m not sure about the other one.

Good luck!

TiggerMe profile image
TiggerMeAmbassador in reply toLucyYoga

It is so tricky as often by the time you are diagnosed your body has been struggling along for such a long time, it makes it a slow old trudge back to balance and wellness

LucyYoga profile image
LucyYoga in reply toTiggerMe

exactly…. I think I’ve been hypo for over a decade and lived so much of my life prior in a constant stressful fight or flight response. I’m just gradually trying to untangle it and piece all the pieces of the puzzle together as it’s so multi factorial.

My daily wins right now are managing a bath and a poo! As you say slow trudge.

Keep me posted with how your cortisol results go….

My regenerus test arrived a couple of weeks ago but because they test for DHEA you have to do it between days 19-23 of cycle … so just waiting for that !

I am finding doing daily adrenal cocktail might be helping a tiny bit… difficult to tell but trying everything I can to support myself whilst I gradually titration my NDT dose up.

Have a peaceful and pain free day x

TiggerMe profile image
TiggerMeAmbassador in reply toLucyYoga

Did you see SeasideSusie's response about shipping to America?

LucyYoga profile image
LucyYoga in reply toTiggerMe

no…what was that?x

TiggerMe profile image
TiggerMeAmbassador in reply toLucyYoga

Regenerus? It can take up to 3 weeks during normal times anyway because it's sent to the US to process. However, I have had the result back within a week at times.

There are two options to return the samples

1) Courier pick up from your home, and they give details in the kit.

2) Royal Mail Special Delivery Guaranteed Next Day - this is cheaper than the courier option and obviously must be timed around strike days at the moment, it is the only Royal Mail service that has any type of guarantee of delivery at the moment as Special Delivery takes precedence over any other method.

If I was considering this test at the moment I think I might delay it until things settle down with all these strikes.

LucyYoga profile image
LucyYoga in reply toTiggerMe

Thankyou - good plan. It’s not mega urgent as I seem to be tolerating the NDT now that I’ve started at lower dose and increasing V gradually…. I might hold out too until the postal madness subsides….. and is replaced by swarm of locusts!!

Mitch27 profile image
Mitch27 in reply toLucyYoga

Hi Lucy may I ask what cocktail you're doing for your adrenals ?

LucyYoga profile image
LucyYoga in reply toMitch27

Hello Mitch-

I use a brand called jigsaw adrenal cocktail- powder you mix a scoop with bit of water and have it like a shot! Tastes pretty gross but think it helps.

Failing that if I have the energy in my nutribullet I blend I whole peeled orange, cup coconut water, some coconut cream and big pinch of Himalayan salt. Then you’ve got the 3 main adrenal cocktail components- vit c from the orange, sodium/ potassium from the coconut water, sodium from salt and I add coconut cream as I’m dairy intolerant and like to add some fat to slow down the sugar absorption from the sugar and lower the post prandial spike. Serve it in a martini glass and you can pretend it’s a proper cocktail! X

LucyYoga profile image
LucyYoga in reply toLucyYoga

You can get jigsaw one from Amazon- I’d recommend the actual powder over the capsules

Mitch27 profile image
Mitch27 in reply toLucyYoga

Thanks a million I'll probably try the blended one as I'm useless taking meds that taste crap as I just won't take them ..so much appreciated 😊

LucyYoga profile image
LucyYoga in reply toMitch27

pleasure…. Although you prob don’t want to feel colder you can blend it with ice and add pineapple or lime to make it more like frozen margarita or pina colada! Take care

Mitch27 profile image
Mitch27 in reply toLucyYoga

Nyom nyom nyom 😋😋😋

SarahJane1471 profile image
SarahJane1471 in reply toMitch27

or 100mls fresh OJ, quarter teaspoon Cream of Tartar, quarter teaspoon seasalt. 🤷‍♀️

very cheap

LucyYoga profile image
LucyYoga in reply toSarahJane1471

Thanks for that- the jigsaw one is pretty pricey and if this does the same thing....

TeaFree profile image
TeaFree

Great points about the importance of cortisol, timing/dosing and the exquisite feedback loops involved in thyroid-adrenal function, mediated by the HPA Axis. And I am very grateful for your link.

The same sort of relationship complicates interactions between gut, absorption, and various vitamin levels, which then come to mediate everything else.

And like you, I have come to the conclusion that latent adrenal issues have a lot to answer for, and that it is important they are addressed before trying to optimise thyroid treatment.

Because the adrenals are 'upstream' of the thyroid in many respects, and a variety of (particularly chronic) stressors have knock-on effects on all important T3 availability in cells.

It happens, too, that one of the things on my radar is metal toxicity, in at least complicating these and other mitochondrial issues for me. Not least because I exhibit Gilbert's syndrome, which is really a common genetic deficiency in the liver's ability to detox various things whose excess can put a spanner in the works. It is fair to assume that many other people will have toxicity-loading issues: pubmed.ncbi.nlm.nih.gov/335....

And in this connection it may be worth checking out some of the comments on thyroid and adrenal issues on a (South African) site seeking to manage these in treating metal toxicity (specifically mercury): livingnetwork.co.za/lifesty....

One of the key things to emerge from Cutler's work was the importance of dosing drugs (in this case chelators) in sympathy with their half-life, in order to achieve a smooth and clean result.

Much the same issues apply to identifying optimal times for dosing. And maintaining appropriate levels of various hormones in keeping with natural rhythms. The only more important thing than getting this right is probably whether we're taking a drug at all.

And, in the case of some drugs, like chelators (ALA, DMSA etc.,) with a half-life measured in a few hours, Cutler's point was that it is better not to take them at all than to take them without a disciplined intra-day regime.

One need not give any special credence to the mercury connection of course. The general points there still hold. The more so because they have been tested extensively in the context of providing adrenal and thyroid support adjuvant to heavy metal chelation, which naturally places an additional very heavy load on one's system.

The gist of it is that cortisol testing is quite hit-and-miss, can be costly (if you want to develop a properly accurate picture over time) and that any single shot at it can too easily give rise to erroneous, perhaps unwarrantedly complacent, conclusions.

As is so often the case, it is often more pragmatic to go with our symptoms. And it is instructive to spot the subtle differences between strictly Adrenal symptoms and those that can also arise from other 'downstream' and feedback sources.

TiggerMe profile image
TiggerMeAmbassador in reply toTeaFree

Fascinating! I'm with you on the heavy metal issue as I have just found out that our water supply is still lead 😱 so a bit of digging required there to get that removed, also any dentistry that disturbs fillings causes a flair up 😕

Interesting what you say about testing also, that it can be equally helpful and misleading, bit like MOTing the car it doesn't mean the wheels won't drop off the following week!

I am quite a sensitive soul when it comes to noticing change but thought I would test to see if my hunch is correct, though it does try to drag you into a testing regime when actually if you stop and really listen to your body you know the answer, often just lack the confidence to believe in yourself.

I do also have a wonky gene affecting my TRHR feedback loop....

TeaFree profile image
TeaFree in reply toTiggerMe

Yes, I had to laugh at your MOT analogy, because I recently got a bill for £360 to fix a rear mid seat-belt failure on test. For a seat no one ever uses, which was probably locked up by the tester himself! Lots to work on there. So, I fixed it with a new torx 45 bit, five minutes of my time (to let the belt go under the seat) and then just a new £1 belt stop.

Treating the test, not the patient, is a thing more generally too!

And I also agree that DNA testing ought to be much more widespread, and not just a Christmas novelty to check out the extent of our neanderthal mitochondria.

In any other context it would be funny that the NHS has just got around to trialling DNA testing for youngsters. That's a bit like pondering whether general use of the wheel might be a good idea. But for the fact that the primary NHS concern of course is whether in aggregate it is likely to create more demand than lends itself to simple flow-charting.

Besides which, a central plank of NHS prescribing is based on the expedient assumption that we are all the same. And a lot of us may become uninsurable (or paranoid) if we all knew what was in our DNA (though perhaps not our stars).

Nevertheless, a bit more focus on MTHFR, UGT1A1, TRHR and other common polymorphisms in this space would be pragmatic in setting us on our right individual path.

Then at least we wouldn't have to die wondering.

TiggerMe profile image
TiggerMeAmbassador in reply toTeaFree

Pleased I made you laugh 🤗 I used to have the same issue with the handbrake on my old automatic 🙄

Please post more often as you have a great deal to share and you in turn do make I 🤣

I found my thyroid DNA results most enlightening and managed to read without fainting, even though I am in a high risk group of such things (though untested other than visually....) female, blonde, middle aged, menopausal!

NHS Endo disinterested in the DNA report 😕

LucyYoga profile image
LucyYoga in reply toTeaFree

hello-

So interesting you mention metal toxicity. Although I tested negative for all different kinds of metal toxicity last year when I started this journey (apart from very slightly elevated levels of aluminium), my big issue is mould toxicity/ mycotoxins. I have a whole protocol ready to start but I really just far too weak now to embark on a rigorous detox regime and I’m first just trying to get my thyroid hormone levels up with NDT and addressing adrenal issues. Once I’m strong enough I’ll start the mycotoxin detox.

What really rang out to me was that you mentioned Gilbert’s syndrome. I was randomly diagnosed with this about 5 years ago off the back of some routine blood tests. So Thankyou for reminding me of this as I hasn’t even joined the dots as to this impeding my liver’s ability to detox.

TeaFree profile image
TeaFree in reply toLucyYoga

Hello LucyYoga,

Yes, the thing is, it's all joined up. And I have been on a better than decade-long search to figure out why I suffer from something called lone paroxysmal atrial fibrillation, which is to say a periodic, rapid, irregular heart rhythm that no one knows the cause of. It's a diagnosis of exclusion. So, I have been excluding... with no great success! But I do exhibit hypothyroid symptoms and low T4-T3 conversion too, which may be down to mitochondrial dysfunction and gut dysbiosis. And have also been alerted to the need to get (common) adrenal chronic stress issues sorted first, before twiddling with any thyroid 'knobs'.

An early stop on the trail was Dr Sarah Myhill and she encouraged me to have a DNA adducts test done by Acumen, which showed mycotic metabolites (fungal exposures) to Terreic Acid and Aflatoxin. That was interesting. But of course Candida in the gut is also a major problem with many people in forums like this. Because low stomach acid has a lot to answer for in terms of promoting an environment for candida and leaky gut problems associated with e.g. poor B12 (and other vitamin) absorption, which can become a vicious circle, tied in a feedback loop with thyroid dysfunction.

Doctors often make this worse because they have a bit of a proclivity for prescribing proton pump inhibitors when the opposite is needed. Contrarily, they even prescribe PPIs for stomach pain associated with taking anticoagulants, like Dabigatran (Pradaxa), when the drug actually has tartaric acid included in the pill formulation to aid its absorption! And it won't work properly without an acid environment.

The only notable thing about my medical history before I was diagnosed with AF was elevated bilirubin (Gilbert's) and (like most of my generation) having my teen teeth chock-filled with mercury amalgam. These two things themselves may not be unrelated.

But the combo is a rich basis for a bunch of very protean manifestations. Metal toxicity is widespread and insidious. Mercury particularly is known as the 'great imitator'. And Dr Cutler did a great deal of research in this field (to cure himself), so his protocols are worth checking out. Not least because, as I say, for metal chelation to be tolerated and work properly, everything else (like adrenals and thyroid) have to be functional first.

One of the important takeaways for me from Cutler's work (he had a PhD in Chemistry from Princeton) was the importance of adhering to drug half-life in dosing. We can all be a bit casual about taking 'our token daily pill', when timing and split-dosing could be important. This is particularly so with chelating heavy metals, because once you start the train towards elimination from cells where they have long been sequestered you don't want them finding a home somewhere else. You want them gone. Not in your brain, for instance. So you have to keep the 'train' stoked and running for several days at a stretch at least. And repeat frequently. More often than not it gets worse before it gets better.

However, it is probably no coincidence that these maladies, straddling multiple medical domains, are poorly handled (and often below the radar) at the same time as we have something of an epidemic of chronic fatigue and other metabolic disorders (even before Covid). I think there is a lot of unremarked mercury, lead, cadmium and aluminium toxicity out there, which future generations will no doubt link many of our problems to (when there is no one left to bring a class-action). Barely anyone tests for this stuff, or even knows how to, or how to interpret the results. Cutler focused on hair analysis.

Doctor's desk references dismiss Gilbert's (hyperbilirubinemia) as of no clinical significance. But this is very far from the truth. In adults it most often betokens a uridine diphosphate-glucuronosyltransferase-1A1 (UGT1A1) DNA polymorphism which impacts cytochrome P450 glucuronidation in the liver. The liver is, possibly not coincidently, the place where a lot of T4 should be converted to T3 (along with the mitochondria). When these things not only go slow but fail to expel xenotoxins you get a bunch of (cumulative) problems.

LucyYoga profile image
LucyYoga in reply toTeaFree

Hello TeaFree,

Thankyou for sharing such a wealth of knowledge.

I totally agree on the PPI issue- I have never taken them for that very fact, although at the beginning of my health crisis that started just over a year ago my GP couldn't understand how lowering already low stomach acid that at the time I believed was contributing to proloferation of SIBO could be deleterious!!! Although he also didnt know that T4 gets converted into T3!! So I very quickly stopped bothering with him.

Fortunately candida is not an issue for me and ive gone a long way to healing my intestinal permeability over this past year.

The mycotoxin panel I had done a few months ago revealed exceptionally high levels of ochratoxin, tricothecene and gliotoxin.

May I ask, did you undertake a mould detox protocol and if so did it yield results quickly?

Fortunately ive not ever had mercury fillings- only compsite ones. I can thank my parents for sending me to a very good dentist as a child and teen. I think the slightly elevated levels of aluminium in my system was probably due to all the years of using conventional deodrant, suncreams, non stick cookware and the likes.

I will definitely check out Dr. Cutler- thankyou for the recommendation.

The last paragraph about the DNA polymorphism is fascinating- explaining further my struggles, as you say, with eliminating xenotoxins.

Thankyou again for all the information.

Lucy

TeaFree profile image
TeaFree in reply toLucyYoga

No problem. It's nice to have the opportunity to think aloud, to some purpose.

We put GPs on a pedestal, but they have a lot to cope with, often not a lot of experience, they don't spend an awful lot of time on biochemistry, various specialisms are not joined-up, it's all a bit point and shoot ("raised cholesterol? Take this statin.") and that's how the NICE flowcharts work. No one can get you for following the chart.

So, a lot goes under the radar until it's "Good news Sir/Madam, it's serious!" That's pretty much how the NHS is set up. And nothing is more certain than that everything will get serious that way!

I'm afraid I didn't do a mould detox, because at the time it was an incidental finding and seemed a little off base for my immediate problem. Dr Howard, who set up the Acumen lab, was pursuing the idea that, among other things, DNA adducts (toxins stuck on our DNA) progressively block their function and contribute to mitochondrial dysfunction, chronic fatigue and ME.

I do not decry that for a moment. However, it is also quite possible that misdiagnosis and poor treatment of thyroid symptoms and ignoring other common polymorphisms are responsible. And once you know you have Gilbert's, that's a valuable insight of a whole different order.

Contrast this: gpnotebook.com/simplepage.c..., which is why we may get short shrift at the GP, with this: gilbertssyndrome.com/detoxi.... Or this: metabolichealing.com/gilber....

Doctors are just at the point of wondering if some drugs may sometimes not be such a good idea for Gilbert's sufferers. But not so much to stop them from waiting till they get an actual adverse response!

Whereas, Gilberts betokens a phase II detox deficiency in the liver, which can be quite a big deal. Particularly for T4 and RT3, for instance, which depend on glucuronidation for their metabolism and breakdown.

The body's master detoxicant Glutathione (GSH) will be depleted in Gilberts as a result. But all is not lost because bilirubin (which is the marker elevated in Gilberts) is a pretty powerful detoxicant in its own right (our bodies are clever like that). It will, for instance, likely reduce our incidence of cardiovascular disease, and in some cases chronic arterial disease, quite significantly (by 60+%). But, on the downside , can both increase our burden of toxins and impair our ability to dispose of them. Not good.

I have derived some benefit from taking N-Acetyl Cysteine (NAC) which is a natural precursor of GSH. But GSH can stir up mercury without eliminating it (it takes thiols, with two sulphur bonds to do that efficiently). So, I have to be a bit careful.

It sounds as if you may already be well aware of the ramifications of Gilbert's, but they are worth reprising in the context of thyroid and free radical/detox issues.

Mitch27 profile image
Mitch27

Morning, interesting reading all the comments . I had a saliva cortisol test done earlier in the year by Medichecks as they started doing them again . (Just checked they now do a blood test and they do the DHeA test as well)My results on my test showed a very low cortisol reading on waking suggesting possible Addison's which I reported to my doctor who poo pooed the reports saying rubbish, saliva test is crap to which I pointed out it's actually the better way of reading it, complained about me using private labs who to her are no good .. I said why is that considering they're absolutely legitimate.... 😤😤 She wouldn't hear anything about it . Proceeded to get me a blood test which showed ok results although how could they do a waking test at 6am ???????? That's when I wake up with internal shakes ..and feel like a drug addict waiting for a fix .. (I presume) .... And by the 12pm test my levels were better. The report noted it's to do with my waking cortisol ..... I'm still no better off as they're just ignoring it . My latest tests on ndt say low T4 , on thyroid S, but I feel like crap every morning, constantly tired although b12 is ok and the pain in my leg muscles is bloody awful .... But I just can't get anyone to address my issues seriously 😥😥😥😥😥 I go through stages of craving food, my weight has gone up again, I try do low carb but my brain just overrides everything and eats and at times I can eat four different things in a row without being satisfied, like a piece of chocolate, to a slice of toast to a biscuit ... In a row ... It's ridiculous and then makes me feel crap because I hate myself for complaining about putting on weight and not being able to have any self control .....,😫😫

TeaFree profile image
TeaFree in reply toMitch27

Interesting recent scientific gathering at the Royal Society, which prompted a NYT article: Scientists Don’t Agree on What Causes Obesity, but They Know What Doesn’t nytimes.com/2022/11/21/opin....

Among the contributors was a biochemist, who opined:

"The mystery could be explained by the thousands of toxic substances ultraprocessed foods can carry in the form of fertilizers, insecticides, plastics and additives".

Apparently, "Her research in cells has shown these chemicals interfere with metabolism".

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