How the Organic Acids Test might help turn things around!
This first part written in late Feb, 2016 and concerns the first OAT test I did in mid-2015, plus more.
Then in red, you’ll see an Update for September 2016 after I had a MAJOR crash, plus did a second OAT right smack in the middle of that crash.
Then comes another Update in red for 2017 where I discovered I’ve had mold in my body all this time…perhaps the bottom line for ALL of this.
FEBRUARY 2016: I am a hypothyroid patient who discovered in a hard way that there can be more issues going on that need to be addressed, apart from one’s hypothyroid state!
And the Organic Acids Test might be key to understand what is going on.
Sure, treating our hypothyroid state in a correct way is huge for health, energy and well-being, since thyroid hormones effect virtually every cell and organ in one’s body! In 2002, I went from 20 years of “hypothyroid treatment hell” with T4-only meds like Synthroid and Levoxyl, to turning my life around in a HUGE way by changing to Natural Desiccated Thyroid and finding my optimal dose, as well as optimizing issues related to years of a former bad treatment.
But due to a few back-to-back incidents over the past year, it dawned on me that something else is going on with me. For example, I found out, when detoxing high copper levels in 2015 for six months (my fault–not due to MTHFR–another story) that something is clearly wrong. I had horrific and debilitating fatigue the entire time I was detoxing–far worse fatigue than I’d seen others have. It made no sense to me.
So because of this debilitating fatigue, I decided to learn more about myself and ordered an Organic Acids Test (OAT) in the summer of 2015 while detoxing high copper, which is done via testing your urine. Now it’s somewhat expensive–it can start at $345 and up from there. But what it can reveal about you is huge. I discovered, among other issues, that I definitely have a mitochondrial problem, plus other issues that are probably inherited—carb metabolism problem and fatty acid issue. I started on their recommended supplements.
But in February 2016 as I am writing this, I went back to those results. I had a horrific crash after a day of activity which left me in bed awhile, and took weeks to recover from. This was after lowering high copper, treating SIBO (due to the high copper) and was actively treating a yeast infection from hell. My iron was also good. So what was that horrific crash and unrelenting fatigue about??
WHAT ARE ORGANIC ACIDS?
The Organics Acid Test (OAT) examines metabolites (chemical substances produced by your metabolism) that are coming out in your urine. Those metabolites can give clues about the efficiency (or lack of) of your internal cellular processes as well as gut microbes. It gives clues if we have a blockage, nutritional insufficiencies, and/or bacterial overgrowth.
Organic acids are the byproducts of cellular metabolism, i.e. your cellular metabolism is made up of certain steps of certain biochemical reactions and pathways based on your body’s needs. So if my body needs energy, for example, certain metabolic reactions occur down a pathway to create that energy. Like this: A to B to C to D. Or if I need to break down the food I eat, there are certain metabolic chemical reactions needed. And in creating those different metabolic pathways, certain acids are used and/or produced. They range from acetic acid, butyric acid, oxalic acid, lactic acid, malic acid, uric acid, citric acid and more. https://en.wikipedia.org/wiki/Organic_acid
But sometimes, those metabolic pathways don’t work the way they should! So A might break down to B, but it stops there and begins a different pathway. Because of a nutrient deficiency or an inherited block, they go down DIFFERENT pathways in trying to create the same end result, but which can be inefficient or problematic. And what comes out in your urine reveals what can be going on inside you that’s inefficient or needs help.
WHAT THE ORGANIC ACIDS TEST REVEALS
The results tested are basically listed like this (for the ORGANIC OAT test by ORGANIX, which is the first one I did):
1. NUTRIENT MARKERS, which reveals what is going on with your Fatty Acid Metabolism, your Carbohydrate Metabolism, and your Energy Production (aka Citric Acid Cycle, also called the Krebs Cycle). You also learn if you have enough of certain B-Vitamins, and how they are affecting (or not effecting) your Methylation abilities, plus other nutrient deficiencies. There’s potentially a lot of information under all of this.
2. CELL REGULATION MARKERS, which is looking at your Neurotransmitters, plus Oxidative Damage and Antioxidants.
3. TOXICANTS And DETOXIFICATION indicators i.e. what toxic element might be to high in your body, plus whether you are detoxing (which I was).
4. BACTERIA OR YEAST MARKERS
HOW MY OAT RESULTS LOOKED IN JULY 2015–my first OAT testing
Below you will see what abnormalities based on what was coming out with my urine, what they recommended I do about those problems, and what those problems are commonly associated with. Note that there were other areas tested that are not shown below because they were fine….though I do mention two of those under the Energy Metabolism area that were so close to high!!
THE MEANING
Interpretation of all the above has NOT been easy. First, I could find NO doctor anywhere in my area who either understood this, or even accepted it. When I told one PA what I had discovered about myself in one particular result, he proceeded to pooh-pooh the entire Organic Acids Test without even asking how my symptoms match the implications. All I could think of is “Are practitioners really this stupid, close-minded and clueless” as I walked out. (They are).
So I had to begin extensive research on my own on the internet. And it’s not easy. First, there are YouTube videos that helped a lot at the beginning and I highly recommend them. This is one: https://www.youtube.com/watch?v=x92N2wgM0J4 You are faced with understanding biological and medical terminology that can be daunting. But those videos do help!! Search for others. And my article here will help you as a start.
Then I started doing research on the net, just with certain terms. For example, I would search the word of whatever compound I was quite high in, such as “high urine Cis-Aconitate”. And there is plenty to read, and again, I frequently had to read certain articles or certain parts of articles several times to really get it to soak in. I can’t stress the latter more–read, read! But then came weeding through it all and deciding “what information applies to me?”. Because some of the information was pertaining to blood, not urine, or certain diseases that involved the particular compound vs other causes. (I also learned to always add “high urine “to each my search word results)
I also had to deal with a tendency of mine to be overwhelmed or bored. I simply had to come back to it another time.
Then when it came to recommended nutrients to treat some of these issues, there was the problem of “how much” of each do I take. The OAT results had recommendations, but I found some of it to be quite paltry and/or ineffective, and I’ll talk about that later.
DID I SEE A CLUE AS TO WHY I WAS SO DEEPLY TIRED WHEN DETOXING HIGH COPPER? YUP.
Yes! One of the first things that stood out to me in my OAT results was under Energy Production (Citric Acid Cycle). I clearly had a big problem there, and I think the high copper, then the detoxing, either caused it or made what I had much worse!!
The Citric Acid Cycle (also called the Krebs Cycle because of the man who identified it) is the way your body generates its energy via a series of important chemical reactions. It’s all derived from the carbohydrates, fats and proteins that you consume. https://en.wikipedia.org/wiki/Citric_acid_cycle
In my urine results, there were three particular substances which were quite high in my urine and shouldn’t have been if things were working the way they were intended: Cis-Aconitate, Succinate and Malate. And what you don’t see in the above, but was on another chart of reference range “graph lines’, was that both Citrate and Hydroxymethylglutarate were nearly high, too—also associated with energy production.
In other words, there are FIVE clues that I have a faulty energy metabolism, i.e. my ATP production (that which supplies large amounts of energy to my cells) was probably less-than-optimal due to a blockage or inhibition and thus, there was a movement towards a “compensatory pathway” to get energy, which these high levels revealed. And frequently, those compensatory pathways are not wonderful ways to achieve good energy. In simple terms, I do not make great energy…
And because each metabolic pathway requires certain enzymes and nutrients to achieve the end result, my OAT information stated that these specific high acid levels imply that I am deficient in two key nutrients: Arginine (high Cis-Aconitate) and CoQ10 (Very High Succinate and Malate), plus several B-vitamins. It turns out that adequate amounts of CoQ10 are critical for the mitochondrial in the formation of the energy-producing ATP!! (And in 2017, I finally figured out that my body was not producing CoQ10 anymore, probably due to the stress of the massive Mold Inhalation I went through in 2013. i.e. the latter may have activated some genes which influence CoQ10 production)
For Arginine, I expertly ignored that at the beginning when I got my OAT results. i.e. overload and boredom. But it was one of those later times of study that it hit me: I REALLY need this stuff. My high Cis-Aconitate can be due to ammonia toxicity (either via a slow renal process or the high bacteria I found myself with) and that ammonia toxicity can indicate arginine insufficiency, since arginine is needed to achieve the ammonia clearance through the Urea Cycle. Says one study: The high concentration of ammonia interferes with oxidative metabolism in the brain through an inhibitory effect on the tricarboxylic acid cycle (TCA). Inhibition of the TCA cycle may result in depletion of ATP. https://www.ncbi.nlm.nih.gov/pubmed/9475502 My high ammonia depletes my ATP, which depletes my energy!!
Arginine is one of several necessary amino acids and is used in the biosynthesis of proteins i.e. a “multi-step, enzyme-catalyzed process where substrates are converted into more complex products”. And this points to another problem I found out I had via the OAT–I don’t break down proteins in the right way, and it recommends I eat much lower amounts of protein. Perhaps this is due to my low arginine?
Additionally, my Citrate (shown on the line graph you are not seeing) is almost high which also goes along with arginine insufficiency. Remember the name of this energy process–the Citric Acid Cycle?? So you can see that Citrate is important, yet mine is coming out in my urine instead of being used properly. Isocitrate was heading up on the line graph, as well–also a sign of arginine insufficiency. All also related to Krebs Cycle i.e my energy metabolism.
But another problem ensued: HOW MUCH arginine?? I did a lot of research again…it’s maddening. But did see some are on 2000 mg, 5000 mg or 10,000. I am on 1000 as I am writing this, but I also take 500 mg of Ornithine with it, a precursor. Ornithine, along with Arginine and Citrulline, are the three amino acids involved in the Urea cycle, alongside L-Arginine and L-Citrulline. Here’s a study with showed the Ornithine improves energy, which seems to be because it lowers ammonia: https://www.ncbi.nlm.nih.gov/pubmed/19083482
I discovered that Citrulline (the precursor of arginine) efficiently increases plasma arginine concentration in healthy adults without any reported side effects that high dose arginine could have to your stomach https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3268370/
I also found out that Ceylon type Cinnamon metabolizes into sodium benzoate, which chelates ammonia (which again, I’m assuming is high due to low arginine–no testing done yet). When I remember, I do 1g-2g in the evening, mixing it with either yogurt or cream cheese. 1 tsp of ground cinnamon is 2.6g. If anyone uses a capsule machine one “00” capsule would be about 1/2g. More great info here: https://raypeatforum.com/community/threads/too-much-protein-at-once.5455/
An interesting tidbit about low arginine: it may be linked to Alzheimer’s: http://www.nutraingredients.com/Research/Arginine-deficiency-may-be-linked-to-Alzheimer-s And it says that arginine supplementation can’t get through the blood-brain barrier, so the solution is to block arginase which breaks down arginine!! L-norvaline blocks arginase. But I’m to ask my doctor to find an arginase test for me.
The bottom line is: I have strong evidence of poorly functioning energy production….and the energy it probably took to detox was greater than I had the ability to keep up with…thus my constant deep fatigue. As of Feb, 2016, I am currently taking 500 mg CoQ10 (I had to go higher. See my September 2016 update below), 1000 mg Arginine and 500 mg Ornithine, arginine in another supplement, plus the Ceylon cinnamon to see if I notice improvement.
And by the way, articles say that Creatine stimulates the ATP, so I have just started that today. (Didn’t keep up with it)
A SIDE NOTE CONCERNING THE TERM “CHRONIC FATIGUE SYNDROME” aka CFS
I have noted that Dr. Myhill believes that the term CFS fits what is actually a mitochondrial problem — similar problem to my “energy metabolism disorder”. And she uses the CFS label throughout her great information.
But I am totally turned off by the term CFS. I remember the 1980s when it was heavily coined as this “new” and “mysterious” condition that also included reactivated EBV for many. Later, thyroid patients were getting the CFS diagnosis a lot, too. But they discovered that once they got on Natural Desiccated Thyroid AND found their optimal dose, that “chronic fatigue” went away. For most thyroid patients, CFS aka chronic fatigue was NEVER a “separate” condition as doctors have so often pushed because of their inane need to use the TSH lab test (which leaves many undiagnosed hypothyroid and thus, fatigue) or Synthroid when they do treat (which is lousy being only one of five thyroid hormones, and thus continued fatigue.). See https://stopthethyroidmadness.com/t4-only-meds-dont-work
Then you have so many die-hards who think that “CFS” equals “EBV”. Black and white. One and the same. But our experiences have not found that to be true. Sure, you have chronic fatigue with EBV. But some have chronic fatigue without it.
Instead, I see myself as having a “Mitochondrial problem” which does not include reactivated EBV, is not “mysterious”, and is not poorly treated hypothyroid since everything for me is perfectly treated in that arena. I also have optimal iron levels as just tested, and I do not have adrenal fatigue. It appears that many who are assigned the CFS/ME moniker have either undiagnosed or poorly treated hypo, inadequate levels of iron (versus optimal) and a cortisol problem (which only saliva should be used to discern, not blood.
And in spite of her use of “CFS”, she has a good page about the mito problem: http://drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure
I ALSO HAVE A CARBOHYDRATE METABOLISM DISORDER
It’s stated that a carbohydrate metabolism disorder is a “congenital abnormality” i.e. inherited. https://en.wikipedia.org/wiki/Inborn_error_of_metabolism And oh did that make sense, as my Dad’s side of the family ALL had diabetes (but only if they got fat). Luckily I don’t have it, but clearly, this could lead to it. Lovely.
What revealed this issue is my high L-Lactate and very high B-Hydroxybutyrate. For the “excess L-Lactate” http://emedicine.medscape.com/article/167027-overview states that it represents increased anaerobic metabolism due to tissue hypoperfusion. Anaerobic means lacking in oxygen, and hypoperfusion means an inadequate supply of oxygen and nutrients to the tissue. And this is where my faulty Citric Acid/Krebs Cycle again rears its ugly head.
Here’s what http://emedicine.medscape.com/article/167027-overview states is supposed to happen:
The anaerobic metabolic pathway known as glycolysis is the first step of glucose metabolism and occurs in the cytoplasm of virtually all cells. The end product of this pathway is pyruvate, which can then diffuse into the mitochondria and be metabolized to carbon dioxide by another, more energy-efficient metabolic pathway, the Krebs cycle. The metabolism of glucose to pyruvate also results in the chemical reduction of the enzyme cofactor oxidized form nicotinic acid dehydrogenase (NAD+) to nicotinic acid dehydrogenase (NADH) (reduced form).
The same above article states:
Lactic acidosis (I always seem to have a lot of that), on the other hand, is associated with major metabolic dysregulation, tissue hypoperfusion, the effects of certain drugs or toxins, and congenital abnormalities in carbohydrate metabolism.
And if my Krebs cycle is faulty, which my results show it clearly is, I tend to make too much l-lactate for energy, and it doesn’t get used well!! Lovely. My Carbohydrate Metabolism Disorder contributes to my Energy Metabolism Disorder if I’m understanding all this correctly.
My carb disorder also tends to mean that I use muscle for energy instead of fat. That’s why to the right of my very high ß-Hydroxybutyrate, you see “ketosis”. I’m in a chronic state of ketosis, just like my diabetic husband, even tho I’m not diabetic! He also has high ß-Hydroxybutyrate!! Ketosis means I’m not using my carbs for energy but using my fat and making ketones…
I’ve read that high ß-Hydroxybutyrate means you have impaired insulin function, which some call insulin resistance. But it can mean that the insulin issues could impact the transport of amino acids into the cells. And that’s where arginine can be important—it’s stated to improve the sensitivity of the body’s cells towards insulin. http://www.aminoacid-studies.com/areas-of-use/diabetes.html The latter article says the same for l-carnitine in improving sensitivity to insulin. Because I’m on both. If that’s the case, Arginine could ultimately improve my energy cycle”I hope,…since so far, the l-carnitine hasn’t done much that I’m aware of. I’ll talk about it more below under Fatty Acid.
You’ll see that CoQ10 is recommended again for a carb metab disorder, plus ALA and the B-vitamins. But for the high ß-Hydroxybutyrate, you’ll also see Chromium and Vanadium. And guess what?? I did hair testing (the hair toxic and essential elements kit) last year and BOTH were low. So I immediately got on both late last year and figure I’ll need to stay on those the rest of my life. I also take the recommended manganese and magnesium. I also use Berberine if I’m going to eat carbs (when I remember). You might say that Berberine is a natural version of Metformin. I comment more on all this in the September 2016 UPDATE below this.
MY FATTY ACID METABOLIC BLOCK
This turned out to be another problem I have towards energy production! It was manifested by my “very high” Suberate and “high” Ethylmalonate, and the recommendation is a strong need for l-carnitine and B2.
Suberate is another organic acid and is the product of your fatty acid metabolism. Like glucose, fatty acids are an important source of energy! They are formed from carbohydrates in your diet then processed in your liver, and it involves many important steps, aka fatty acid metabolism. With me having two of those organic acids very high, OAT explains they are strong markers for deficiency of carnitine.
From http://www.functionalmedicine.net/pdf/Insider’s%20Guide_37.pdf:
Carnitine is needed to move fatty acids into the mitochondria where they are converted to energy using vitamin B2. When insufficient levels of carnitine or vitamin B2 slow down this process, other parts of the cellular machinery take over and make adipate and suberate. A similar block in another pathway causes high ethylmalonate. Since most of your body’s energy is produced from the burning of fatty acids, your muscles and brain suffer when this cellular energy pathway is blocked. Anything that interferes with the normal fatty acid oxidation may reveal high levels of these metabolites. Rule out environmental toxin exposure, excessive aspirin use
So because of this issue in my fatty acid metabolism, I got on L-Carnitine (the Fumarate version) many months ago at 2400 mg. There are other varieties of Carnitine, like tartrate, but research told me that the fumarate version is better for ATP energy, and supposedly is absorbed better than tartrate or pure carnitine. Don’t know if it’s accurate but went with it anyway. I also got on high dose B-vitamins since so many recommendations above involve insufficiency of several B’s. I am considering adding extra B2.
But I have to say this: being on 2400 mg l-carnitine and higher dose B-vitamins for a few months has not improved my energy levels at all that I can tell. When something is demanding of my energy, I still have energy/fatigue problems. In fact, as I’m writing this, I majorly crashed when we did a heavy amount of walking over several hours a week ago. That is what spurred me to dig deeper in all this, and implied I need to look deeper into the OAT information I did last year, and increase some other supplements as an experiment, or add additional ones, which I have done with CoQ10, plus adding other supps mentioned above. (Turns out I needed far more CoQ10 and just didn’t know it)
Granted, I do think that my six months of stressful copper detoxing, followed by having to correct Small Intestinal Bacterial Overgrowth late last year (which seems to be caused by my high copper and detox) could have stressed my body and made my Citric Acid/Krebs cycle problem worse…thus, I’m not ready to do as much as I want without crashing like that.
MY HIGH LEVELS OF LACTIC ACID
To my horror, I found out I had high levels of L-Lactate (which can be due to insufficiency of CoQ10) and very high levels of D-Lactate (which could be from the high levels of intestinal bacteria I had last year). More on the latter farther down. But I am really NOT surprised. Looking back, I’ve always been a “lactic acid babe”. I just thought it was due solely to my Mitral Valve Prolapse. I then noticed that if I got low iron (which can be common when poorly treated for one’s hypothyroidism), up went my lactic acid as evidenced by the burning in my legs when I walked up stairs.
This page http://nutritionreview.org/2013/04/krebs-cycle-intermediates/ states:
When oxygen is unavailable or the Krebs’ cycle is inhibited, the body shifts its energy production from the Krebs’ cycle to the Embden Meyerhof pathway of glycolysis, a very inefficient way of making energy.
As well as producing far less energy, glycolysis also produces lactic acid as a byproduct. Increased lactic acid is a common acidotic condition that can be caused by a variety of metabolic problems.
i.e. when I am demanding more energy from my body than usual, and because I have a defective Krebs cycle, my body is producing more lactic acid as an alternative source for energy to meet the increased demand!! But more lactic acid causes more fatigue! When I overdid my activity last week by bounds, I could tell my lactic acid went WAY up with my horrible fatigue. I get these feeling of “inflammation” all over my body, for lack of a better word. It’s horrible.
Concerning lactic acid, http://www.functionalmedicine.net/pdf/Insider’s%20Guide_37.pdf states:
Lactate is the principal product of glucose metabolism in skeletal muscle and is a major player in anaerobic energy production and gluconeogenesis. High levels are commonly associated with coenzyme Q10, biotin and lipoic acid deficiencies. The following should be ruled in or out to determine the underlying reason why lactic acid is elevated: overwhelming infection, hypoxia, high intake of acetaminophen, increased consumption of alcohol, cocaine, increased iron levels, drug side effects (metformin). Rule out diabetes. High lactate can cause muscle cramping, fatigue and brain fog. If HIGH Consider supplementing with CoQ10, Vitamin B1, B2, B3, B5, Lipoic acid and Biotin.
i.e. what it says to rule out doesn’t fit me…except the mention of diabetes. I don’t have diabetes, but I DO have an inherited carbohydrate metabolism disorder which has similar problems! The latter may be pushing my l-lactate up! But so could my tendency to have CoQ10 deficiency!! This study shows that CoQ10 lowered lactic acid in 24 hours: https://www.ncbi.nlm.nih.gov/pubmed/10358830 Another reason why it seems critical for me to be on CoQ10, plus higher amounts, I believe”
The above did make me wonder if somehow, I’m not getting enough oxygen and thus creating more lactic acid, as well. I need to understand this better.
There is much more to say about high levels of lactic acid, but the bottom line…it’s NOT good and has many consequences. One thing I’m taking to counter it is l-Carnosine 1000 mg (not “carnoTine”, but carnoSine). It’s known to buffer lactic acid! This article explains it’s lactic acid buffering quality: http://www.wellnessresources.com/health/articles/carnosine_amazing_benefits_for_athletes_heart_brain_eyes_and_diabetes/ And here’s a great article about it that doesn’t even mention how it will buffer lactic acid, but so many other benefits! http://www.lifeextension.com/magazine/2011/1/Carnosine-Exceeding-Scientific-Expectations/Page-01
And my fingers are crossed, but after almost a week of taking carnisine, I actually think I notice less “burn” in my legs when climbing stairs. So we’ll see…
SMALL INTESTINAL BACTERIAL OVERGROWTH (SIBO)
Boy was I shocked to see I had this. Have never in my life had gut issues…and it could be because of the high copper and detoxing. It was revealed by the high Indican and the very high D-Lactate. Now granted, I did not do a thing about it last year when I first saw these high levels in mid-summer, because I had no symptoms. I was clueless.
But by October, I was starting to have problems. I would eat certain evening meals, then within a hour, BAM—becoming extremely bloated and uncomfortable. That’s the bacteria giving off gas in the upper intestines and moving into my stomach. Or, if I ate too much fiber, BAM–I’d wake up in the middle of the night with pains. That’s when I relooked at my OAT and saw that I had too much Lactobacillus acidophilus, aka L. acidophilus!! That’s what is in yogurt! And I’ve always been an avid yogurt eater.
Turns out that Lactobacillus acidophilus is a D-lactate-forming species of bacteria, which explained my high levels of D-lactate. Who would have guessed. But it’s not the first time that I’ve overdone my love for a certain food, in this case yogurt. I’ve done the same with my love of chocolate—I’ve overeaten it so much that I found myself with high levels of oxalates and massive hives as a result. Then a few years later, my overeating of chocolate on top of high stress (which depletes zinc) pushed my copper levels up!! Argh.
I was then faced with dealing with the bacterial overgrowth last Fall. I did a lot of research and chose natural antibiotics to lower my entire bacterial count. I had some Keflex on hand, though, and did nine days of that (even though I’m not sure it helps lower bacteria in the small intestine). Then did Oregano Oil and Berberine for about ten days, then garlic caps (pure allicin) and ginger. And voila…I did it SO well that a yeast infection from hell took over, which NOTHING touched. I still have touches of it after 2 months, but it’s much better.
I’m now on a probiotic called Align, which has the important bacteria Bifidobacterium infantis in it and which SIBO experts say is important. I will move to a different one after having been on Align for three months–probably Culterella based on recommendations in repopulating my gut with good bacteria and to crowd out any remaining bad bacteria. I do NOT want to go through THAT misery again. No.
I used this website a lot by Dr. Allison Siebecker: http://www.siboinfo.com/ but there are many other good ones! So search. Learn.
MY SUPPLEMENTS as of Feb. 2016
Putting this together took a lot of work, and as you see, I haven’t yet figured out all the amounts as precisely as others.
- L-Carnitine Fumerate 2400 a day (same as the last few months) – for fatty acid metabolism problem
- CoQ10 500 mg a day (higher then before) – for energy metabolism; OAT shows insufficiency!!
- Riboflavin (B2) and B3 – needed for ATP. I like ATP Cofactors by Pure Essence–has 100mg of Riboflavin and 500mg of Niacin–but that much niacin caused me to feel quite cold, so am lowering it. Also on a multi-B vitamin and have bought a simple B2 capsule.
- Molybdenum (same) – needed for mitochrondrial, helps lower sulphur, was low on hair tissue
- Manganese (same) – helps lower sulphur (mine is quite high)
- Chromium and Vanadium (same) – for my carbohydrate metabolism disorder, both low in hair testing
- Enzymes– to help me break down proteins since I don’t do that well
- Magnesium 400 mcg – helps ATP and improves energy, fires up enzyme reactions
- Amino Acids (using up the Now brand of Amino Complete) – supports Krebs Cycle/energy. Needed with my Mito insufficiencies.
- Arginine 500/ Ornithine 250 – to lower high sulphur, aluminum, and OAT shows insufficiency of arginine
- L-carnosine 500 mg (new, twice a day) – to counter lactic acid, which body makes with my inefficient energy metab. I am taking two and boy does it work.
- Kreb’s Cycle Intermediates by Enzmatic Therapy – Not impressed. The intermediates were taken out, so just taking it for the magnesium amount. Other minerals are paltry. Using up the bottles and will get no more
- D-Ribose (new) 10,000 mg – this is a sugar used to restore ATP, BUT it can raise my bacteria over time (SIBO), as one guy found out and reported on a website. SO I will only use it when needed.
- Creatine – stimulates the production of ATP–one scoop
- AAKG Arginine Alpha-Ketoglutarate – the latter is a Krebs cycle intermediate I wanted to try, one of the few that aren’t high–1 tsp, plus more arginine. But eventually discontinued this.
- UPDATE: I have added NT Factor, twice a day. Studies show excellent energy improvements on this since it supposedly improves the lipid membrane of a damage mito. Also see https://www.youtube.com/watch?v=5Llvh4bQ7hk
Note: there is often mention of using ALA (Alpha Lipoic Acid) since it is an essential co-factor in energy metabolism, is an anti-oxidant,and improves carbohydrate metabolism. But there is information that it could raise mercury, and I have plenty of fillings. My hair test did not show high mercury, so unsure what to think. May not use it.
SUMMARY
All this is potentially huge. The more I’ve learned, the more I’ve had many ah-ha moments when I looked back at my adulthood. Sure, getting on natural desiccated thyroid made huge improvements in my life and was like a miracle. But I could still tell some pesky lingering issues here or there–nothing debilitating in the least as it was when I was still on the lousy Synthroid, but pesky here or there. And today, what was pesky feels MUCH worse after the stress of six months of detoxing the high copper, followed by the SIBO and treatment, then the yeast infection. I just know that I’m not liking this at all, and perhaps my OAT can help me turn things around. We’ll see.
And yes, I haven’t mentioned everything up there, but because of the length of this article, I simply decided to stop there. I also have high sulphates, for example.
Here’s an Organic Acids Test that can be ordered and done on your own, then sent back to get results.
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UPDATE WITH A NEW OAT TEST plus more: end of September, 2016
After I wrote the above first section, I was feeling better in 2016, slowly but surely, and doing so much more as the months went by. But I learned the hard way that something was still quite wrong.
A second major energy crash
On Sunday, May 22nd, 2016, I had quite an active day and plenty of energy to do so. Yet, that evening, I crashed in a major way just like I did the past February…horrific debilitating fatigue. I woke up the next day with the same debilitating fatigue, which ended up lasting for weeks. So two days later, I did another lab’s version of an OAT test I had on hand by Great Plains to get a clue, because I thought I was doing everything right, and this made NO sense.
Important note about terminology between the two OATS I have now used
My first OAT was by Organix. My second one is by Great Plains. The terminology of the Great Plains OAT is a bit different. Where Organix would say Succinate, Great Plains would call it Succinic. Or where Organix would say ß-Hydroxybutyrate, Great Plains had 3-Hydroxybutyric. But what was good to see with Great Plains is that it also tested several B-vitamins and more. Of course, the problem is that you can never know if the level they show is “optimal”! But it was interesting. From now on in most cases, you will see my comments like this: Succinate/Succinc. The first is Organix; the second is Great Plains.
What the Great Plains OAT revealed as far as the MITOCHONDRIA (done on May 24, 2016)
Bottom line, my mito seems worse. My Succinic/Succinate was SO high in the range they use that you couldn’t go any higher on their scale. And what does high succinic/succinate point to again?? CoQ10! My first supposition was that 500 mg I had been on was clearly not working. I needed to go higher. My Malic/Malate was still high My Fumeric/Fumerate was slightly over range high, though with Great Plains, whereas it was undetectable a year ago with Organix. Again, almost high was 2-Oxyoglutaric/ Hydroxymethylglutarate.
And again, but on Great Plains, there were clear problems related to eating proteins. My 3-Hydroxyglutaric was high just as it was on Organix as Hydroxymethylglutarate, which is a recessive disorder (inherited) caused by a deficiency of glutaryl-CoA dehydrogenase (GCDH). And voila, this affects your mitochondria. And the recommendations were to lower the consumption of proteins (groan) plus treat with L-Carnitine. Since I’ve been on l-carnitine for almost a year, my supposition is that I need to be higher at 2000 mg again (I used to be on 2400, but lowered).
What the Great Plains OAT revealed as far as YEAST AND BACTERIA
It showed high Arabinose, which is probably due to the horrific yeast infection which I acquired at the end of last year after lowering intestinal bacteria due to SIBO in late 2015 (and the SIBO was due to the Copper detox). Yeast produce arabinose in your intestines, which is absorbed and binds to proteins. Arabinose will tend to block B6, Biotin and lipoic acid says a study I found (didn’t save the link–sorry), and another article says OmegaZyme ULTRA by Garden of Life will eat up the Arabinose, so I’m getting on that. Am already on B-vitamins and Lipoic Acid.
What the Great Plains OAT revealed as far as Neurotransmitter Metabolites
My HVA/VMA RATIO was HIGH, i.e. my Homovanillic (HVA) was above range, and my vanillylmandelic acid (VMA) was lower in its range), which means decreased conversion of dopamine to norepinephrine, and the enzyme responsible for that conversion is copper (mine was too high) and Vitamin C (the latter was VERY low since copper is an antagonist–more later!) This seems to be related to my copper levels all over again. I also had a very high HPHPA, which literature states can cause this high HVA/VAM ratio. (I am hesitant to include links as you will see serious diseases associated with these issues, which I do not have. So if you research this, keep that in mind–they will mention a wide ranges of problems associated with these, starting with the worse, and you may not have the worse, as I don’t). The bottom line of all the above is that I need to hugely improve my gut bacteria(5), which I have been working on, and still need more work.
My Quinolinic/5-HIAA (serotonin) Ratio high, which means neural excitotoxicity in brain, but is also associated with excessive inflammation. Quinolinic acid derived from tryptophan and is an important intermediate that the body uses to make the essential nutritional cofactor NAD (B3). The recommendation is to take l-carnitine and turmeric, as well as NAD, which I am now on in the reduced form. (Update: turns out this high ratio/brain inflammation was caused by lingering mold in me, which I didn’t know when I originally wrote this section. I will talk about this in the third red update below for early 2017.)
What the Great Plains OAT revealed as far as KETONE & FATTY ACID
I still show high 3-Hydroxybutyric/ß-Hydroxybutyrate, which information says indicates increased metabolic utilization of fatty acids and l-carnitine recommended, and which Organix had said was a Carbohydrate Metabolism disorder.
But this time I researched more, especially on the “Impaired Isoleucine Metabolism” that Organix had revealed due to a very high B-Hydroxyisovalaterate amino acid…and I found that the latter pushes up the 3-Hydroxybutyric/ß-Hydroxybutyrate!! And the treatment?? Biotin and B2. In fact, the Wiki article on an Isoleucine(6) says this: “Biotin, sometimes referred to as Vitamin B7 or Vitamin H, is an absolute requirement for the full catabolism of isoleucine (as well as leucine). Without adequate biotin, the human body will be unable to fully break down isoleucine and leucine molecules.” So I have gotten on a much higher dose of biotin. And for awhile, once again, I need to cut down proteins, which is where Isoleucine is housed!!
I also have high ETHYLMALONIC (just above range): Again, fatty acid oxidation disorder (which I appear to have) and carnitine deficiency. Supplement with acetyl l-carnitine again—which if you have paid attention, is recommended to me quite often under several issues I have!
I also have top of the range phenylpyruvic (PKU) due to mutations in the PAH gene which results in low levels of the enzyme phenylalanine hydroxylase. Caused by deficient activity of the enzyme needed to convert the essential amino acid (AA) phenylalanine (phe) to tyrosine. Treatment is with a diet lower in foods that contain phenylalanine and special supplements. Foods to avoid: egg whites, shrimp, chicken breast, spirulina, watercress, fish, nuts, tuna, peanuts/legumes, and lowfat cottage cheese. It says I need PUFAs, aka n-3 and n-6 LC-PUFAs, but will need help on that with my doctor.
MY GENETICS PROVIDED ANOTHER IMPORTANT CLUE to my fatigue
After studying all the above, and especially having continued mitochondrial fatigue issues, I went to my genetics and discovered another piece to this current fatigue issue I’m having: those three homozygous NDUFS7 mutations affecting my CoQ10.
These NDUFS7 genes, when working correctly, convert B3 (nicotinamide) to NAD (Nicotinamide adenine dinucleotide hydrogen) to NAD+ to NADH, the active form. So….B3—> NAD —> NAD+ —> NADH. Its reduced form which is responsible for electron transport in the production of ATP, so when working correctly, promotes good energy in your mitochondria. Also, CoQ10 needs NADH in order for CoQ10 to be transformed into its reduced useable form…i.e. coq10 which is also known as “ubiquinone“, converts to the active/useable form of CoQ10, called “ubiquinol“. So without NADH, it can’t do that.
When not working correctly (which could be happening due to my three NDSFU7 mutations, which may have activated due to the stress of my high copper)….less than optimal energy, since NADH works with CoQ10 and your mitochondria, the energy producing part of your biology.
A lot of literature states that neither B3 nor NAD+ are as energizing as NADH when it comes to supplementation, even though you will find the opposite stated, as well…that NADH is more energizing as the reduced form. Life Extension feels their Nicotinamide Riboside (the latter a precursor to NAD+) is a great product and that “NADH is not effective as a supplement because it is poorly absorbed, due to disintegration in the digestive tract” (said to me in an email). They base that on this: http://www.ncbi.nlm.nih.gov/pubmed/16802695 YET….you will see many reviews of people who see definite results from straight NADH, the reduced form, which is the opposite of what Life Extension is saying. And for someone like me who may not adequately convert NAD to NAD+ to NADH, I may need straight NADH. Right now it’s a supposition, but I’m taking no chances and using straight NADH.
As far as straight NADH, there are some forums which say that no more than 5 mg is necessary, and some are over-stimulated on 10 mg. Then there are people I know who have done fantastic on 50 mg NADH. And guess what–that is now me.
I found that the information by George Birkmayer, M.D., Ph.D.(7) was absolutely the best on NADH. There are videos of his information on YouTube.(9)
Here’s a study showing the efficacy of NADH for chronic fatigue: https://www.ncbi.nlm.nih.gov/pubmed/10071523 And here’s a great article which contains good NAD/NADH info: https://holisticprimarycare.net/topics/topics-h-n/healthy-aging/1607-is-neuro-regeneration-a-reality.html You’ll see that the fabulous Andrew Heyman, MD, who contributed to the STTM II book, is mentioned.
I found that NADH does the following as well (from a book on the net, which again, I neglected to copy the URL when researching–sorry): repairs cell damage, stimulates the immune system, stimulates the breakdown/use of neurotransmitters (which positive affects mood), stimulates the production of Nitric Oxide (NO) which relaxes blood vessels in your heart, lungs, brain and kidney. And….NADH has some very interesting positive results in animals against Alzheimers!(8) Finally, as of 2006, it was stated to be the only supplement with a “scientifically prove anti-aging effect”.
CURRENT BOTTOM LINE:
I moved up to 1500 mg liquid CoQ10 (Liq-Nol, but later moved to Cyto-Q) while detoxing high copper for the second time and noticed much better results!! Studies showed some people have gone as high as 3200 mg without side effects, so that made me feel better. The Liq-Nol is sweetened with sucralose, sadly, so I am experimenting with only 500 mg of the liquid along with Life Extension’s gelcaps Ubiquinol with Shilajit (the latter has research showing it improves CoQ10 uptake). WARNING: I went QUITE downhill when doing all the latter with Health Thru Nutritions 300 mg Ubiquinol from Kaneka QH and do NOT recommend it. I have now added NADH to it (the active form of B3), as CoQ10 works better with it.
My current supplements are as following:
- Acetyl L-Carnitine (and still using up my Fumerate) and making sure it’s at least 2000 mg daily again – for fatty acid/carbohydrate metabolism problem, plus more
- Liquid CoQ10 1500 mg a day (higher then before) – for energy metabolism; OAT clearly shows insufficiency on 500 mg!!
- NADH – 50 mg
- A multi B-vitamin- needed for ATP. I’m currently on Vitamin Code Raw B-Complex, and adding NADH, folate (I also have a folate mutation that I failed to mention above) and more biotin to it, as I clearly need the latter for an impaired isoleucine metabolism disorder.
- Molybdenum, Manganese – needed for mitochrondrial, helps lower sulphur, was low on hair tissue, and I get it from this: Trace Minerals Complex II
- Chromium and Vanadium for my carbohydrate metabolism disorder, both low in hair testing
- Enzymes– to help me break down proteins since I don’t do that well
- Magnesium 400 mcg – helps ATP and improves energy, fires up enzyme reactions
- Amino Acids – supports Krebs Cycle/energy. Needed with my Mito insufficiencies.
- Arginine 500/ Ornithine 250 – had high cis-aconitate in 2015 which is related to Renal ammonia clearance and your energy production, and was now low on the 2016 Great Plains, possibly due to my arginine supplementation. 🙂 But staying on it for multiple benefits.
- L-carnosine 1500 mg (up from earlier this year) – Note that this is carnoSine, not CarnoTine. This not only counters lactic acid, which I can tell I’m still making too much due to mito issues, but is a great anti-oxidant.
- R-alpha-lipic acid said to be a powerful activator of mitochondrial energy and works with acetyl-l-carnitine
- Vitamin D – mine goes too low if I don’t, plus it’s said to enhance mito function
- Culturelle (30 million to counter former high HPHPA bacteria and Saccharomyces Boulardii (2-6 billion) to counter same.
- NT Factor I am experimenting with this again. I was taking it in May, went quite high, and it started me detoxing my copper again! Had to get off due to detox fatigue, which I eventually improved greatly with the 1500 mg CoQ10. Using it due to lots of literature stating it help heal damaged mito: https://www.youtube.com/watch?v=5Llvh4bQ7hk
And I am involving my two doctors in all this for more feedback to get out of this chronic fatigue mito problem. 🙂
And by the way, I’m still detoxing high copper for the second time, so I’m supporting my liver and kidneys, plus on antioxidants Astaxanthin and Vit. E, as well.
UPDATE for 2017–I have mold in me! Could this be fundamental underlying cause that lead to all this cascading mess? I think so.
Made an interesting discovery late last year: I’ve still got mold in me from a massive exposure in 2013, even though I had treated it then and felt better. It has apparently wrecked havoc in me all this time, and which can partially explain my mito issues. The mold damaged my mito somehow! And the high copper made it even worse.
Why do I still have that mold in me?? Testing (HLA DRB, DQB Panel) revealed that I am part of 24% of the population who have genes that make us more susceptible to getting very sick from the super tiny “biotoxins”, plus makes it more difficult to get the mold out of me…even though I thought I had. I also did the C4a test–double the top of the range and classic for mold inflammation. C3a was fine. Other tests were done to confirm all this. I am in treatment now to get this mold out of me.
In March 2017, I did a Spectracell nutrient test while I was experimenting with 1000 mg liquid ubiquinol and felt well on it…yet Spectracell showed that was the ONLY thing I was “functionally deficient” in i.e. CoQ10. Shocked me. I had to go back up to 1500 mg liquid ubiquinol, which is a financial killer. And I’ve learned the hard way that on days of high activity, I’ll probably require more.
In May of 2017, I thought more deeply about something else: CoQ10 is made from two amino acids: L-Phenylalanine and l-tyrosine. And since my OAT test revealed that I don’t break down protein correctly, that can mean that I don’t have enough l-tyrosine (which L-Phenylalanine breaks down to). I am experimenting with l-tyrosine supplementation soon to see what happens–can’t take L-Phenylalanine as it’s not recommending for PKU, which I don’t break down correctly either.
Footnotes:
5. http://integrativemedicineformentalhealth.com/articles/shaw_hphpa.html
6. https://en.wikipedia.org/wiki/Isoleucine
7. http://www.nadh-priceinfo.com/nadh_doctor_birkmayer_interview.cfm
8. http://nadh.com/pages/alzheimers
9. https://www.youtube.com/watch?v=lm6-C78Zank
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78 Responses to “How the Organic Acids Test might help turn things around!”
Janet H.,
Hi Martin, I am having ALOT of similar issues with energy/fatigue and the mitochondrial disorder symptoms. I also have hypothyroidism but that is considered normal and regulated. I was desperate to find the source of the energy loss. The only things that help me is the L-carnitine (I need up to 10,000 mg/day in liquid form), L-arginine and L-citruline, and the precursors. Also I take NADH, up to 20mg/day, because more that that keeps me too stimulated and I cannot sleep. Certain brands help more than others.
I am reaching out, because I wanted to make sure you know there is a difference between L-Carnitine and Acetyl-L-Carnitine. And their effects are different. Acetyl-L-Carnitine is more for neuro/brain cognitive energy benefit, where as L-Carnitine is more for physical energy. Since L-Carnitine is a MAJOR help in my energy for the day and I have to take such a large mega dose — And it seems like you are the same… I don’t think the “Acetyl” form is the correct one for you. I think you should try the regular L-Carnitine liquid form for mega dosing. And see if you don’t notice more physical energy. And obviously you can take Acetyl-L-Carnitine also, for focus and less brain fog/inflammation. That’s what I learned from Life Extension doctors on-site. If that helps.
Thanks again for taking the time to write everything you went through in such detail. It does help others, like me!! I see now, I need to take that OATS testing myself. I took a genetic testing, so I know some of the areas I need help supplementing, but there has always been something else going on with the energy, and I suspected metabolism of fats being a factor but didn’t know what testing to get or where to go for suggestions. This is very helpful for me. Many blessings to you in this quest for a better quality of life. I wish you better and good health for your future.
Janet H.
Martin
“You’ll see that CoQ10 is recommended again for a carb metab disorder, plus ALA and the B-vitamins.”
I’m sure you are right but is there a particular reference for this? Thanks so much for your article and it’s diligent research.
Janie Bowthorpe
I don’t remember, Martin. You could google it all and see. But turned out my pancreas stopped making enough of the enzyme Amylase, which breaks down carbs and starches. All due to what a mold illness did to me. Today, I take amylase with any carb.
Martin
> My carb disorder also tends to mean that I use muscle for energy instead of fat. That’s why to the right of my very high ß-Hydroxybutyrate, you see “ketosis”.
I believe while one can break muscle for energy, but this would be after using carbs (preferably), and fat (next). Further, as you noted you were in ketosis I’d think you’d be using fat.
“Catabolysis is a biological process in which the body breaks down fat and muscle tissue in order to stay alive. Catabolysis occurs only when there is no longer any source of protein, carbohydrate, or vitamin nourishment feeding all body systems; it is the most severe type of malnutrition. – Catabolysis – Wikipedia”
Martin
How are you doing now, in 2022?
Is there a follow-up article I should read, or is what’s here your best understanding?
Thanks kindly, Martin.
Janie Bowthorpe
I treated a lot, learned a lot. Doing better now.
Laurie
Hi
Thank you for all this info. My husband had a Genova Nutreval micronutrient test done and has problems with his Krebs cycle too it is confusing regarding his COQ10 also the test shows in his blood he has enough (he does supplement daily with it) but then in the oxidative stress section he shows it is over the limit so we are not sure if he is taking enough & it just is not getting into the cell or does he need to take more our doctor doesn’t know what it means, our doctor called Genova to talk to a medical doctor there and couldn’t find out & you mention here that in 2017 you finally figured out that your body was not producing CoQ10 anymore, probably due to the stress of the massive Mold Inhalation you went through in 2013. i.e. the latter may have activated some genes which influence CoQ10 production), I am interested to find out how you found this out about not producing COQ10?
Thanks
Jenny
Hi Janie, you may want to research how thiamine deficiency and especially it’s form known as Allithiamine and Lipothiamine are implicated in mitochondrial disfunction. Please see this article:
https://www.hormonesmatter.com/mitochondria-energy-not-genetics-underlies-health-disease/
and other articles on this site written by Dr Derrick Lonsdale. And also see this article regarding co-factors for the Allithiamine form of thiamine (aka TTFD):
https://www.hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/
I hope this is helpful to you and your readers!
Janie Bowthorpe
Hi Jenny. I’m personally aware of the low B1 cause. But I learned it’s equally as important to test to get some idea if low B1 is the cause in the first place. I once had issues with my mito, seemingly not due to low B1, but due to an acute mold illness followed by extremely high copper and all the stress it all put on my mito. All the latter hugely lowering my glutathione. And it was taking high amounts of the latter that put me on the path to recovery over time.
Brian C
Have you thought about trying ketogenic carnivore diet? (PKD specifically may be helpful.) Have you beaten your candida? I’m hopefully moving in the right direction on a mostly meat/fat based diet against candida myself currently. No updates in a while, maybe you figured it out?
Linda Wolf
Janie, I have purchased an Organix OAT kit and am having a hard time deciding whether to withhold all supplements before taking the test, and if so, for how many days. What is your recommendation?
Janie Bowthorpe
Good question!! I’m thinking just do the test before you start taking your supplements for the day.
aaa
Thanks for the quick reply
The problem is that I do not find how to treat Cis-Aconitate very low
Janie Bowthorpe
Scroll down to info on low on this page: http://www.functionalmedicine.net/pdf/Insider%27s%20Guide_37.pdf
aaa
What you say about the results of Cis-Aconitate is very low
And high Ethylmalonate
How do you handle it?
Summary of abnormal results:
Findings Intervention Options Metabolic Association
Fatty Acid Metabolism
Suberate High Carnitine, B2 Fatty acid oxidation
Ethylmalonate High Carnitine, B2 Fatty acid oxidation
Carbohydrate Metabolism
Pyruvate High Lipoic Acid, B1, B2, B3, B5 Glucose oxidation
Energy Production Markers
Cis-Aconitate Very Low Free-form amino acids Amino Acid insufficiency
Janie Bowthorpe
I strongly suggest doing an internet search for “high Ethylmalonate” as I had to do. Mine was high in 2015, then high still in 2016 when I redid the OAT, yet I was on l-carnitine in a high amount and B2. So it could still be high, as I haven’t done a third OAT yet. I also read it could be related to ketosis, and I’m in a constant state of ketosis according to other results. As far as Cis-Aconitate, mine was high, and I lowered it with arginine. So not sure about low. You can supplement with it.
Karen
Check your FUT2 status. If you’re +/+ for RS601338, you’re a non-secretor and this could be a cause for most of your issues.
Janie Bowthorpe
Hi Karen. I do have that double mutation..in fact have many other FUT2 mutations…and symptoms are mixed. Have never had autoimmune issues, no urinary tract infections, no intolerance to carbs (heaven forbid–carbs are my happy weakness occasionally), never been highly prone to illnesses…etc
What may be related…
1) LOTS of cavities as a child–that stopped in adulthood.
2) Perhaps the low bifadas is a symptom–I have been and will take that the rest of my life.
3) Don’t digest very fast anymore–could also be related to low stomach acid as I’ve gotten older though. Anddd..my body now reacts verrry poorly if I happen to lick the bowl of a neighbor’s cake batter. lol. Use your imagination. Never had that happen before.
4) I do detox and feel verrrry miserable. Have had to learn to find the slowest way possible…
Turns out that some of the issues revealed by the OAT were due to inhaling mold and no telling what other toxins in soil when leaf blowing.
I did get SIBO, but that seems to be related to the intense first copper detox I went through. Didn’t get the same after the second miserable detox…and never had it before or after in my life. And I got candida from hell after that, but that was due to overdoing the bacteria kill!
I’ve never had adrenal issues. Just high cortisol once from taking too much progesterone…
Turns out the high copper was due to tanked zinc…but didn’t get that until 2017 when I found out my RBC zinc was below range. What a shock. Have corrected that!
Mark
Here are the results to the Stone Risk test: https://app.box.com/s/8e72eencaixvu2s2pwkysjbo4oq6pnx2
Mark
Update:
Caught your informative page on hyperoxaluria after researching possible cause of this chronic arthritic-like cervical and lumbar pain and other symptoms (i.e. urinary urgency/frequency) that were amongst the symptoms I mentioned upthread on 09-27 that I thought may have been related to starting the Tirosint. Well, the symptoms lasted and worsened weeks after stopping it and have not stopped. Since I passed a kidney stone a few years back, I needed to re-evaluate my risk for a recurrence, so I did a Stonerisk test and the results how elevated calcium, oxalate, calcium oxalate, creatinine urine, etc.
Pretty confirmatory I’d say, right? Perhaps why it’s been so difficult getting my thyroid optimized?
Was not aware that this could affect thyroid function.
Now, the challenge is finding a practitioner that even recognizes this as a valid pathology.
Thoughts?
Mark
My physician just sent this out about a new saliva cortisol monitoring diagnostic that can be done on an iPhone with Point of Care (POC) technology: http://mailchi.mp/08c9221883b3/join-dr-friedman-for-an-informative-webinar-on-salivary-cortisol-on-your-smartphone-sunday-november-19th-at-6-p-pdt?e=10aac56fa1
Thought others would like to know.
Mark
All I’m trying to do now is to get back to baseline before I added the T4 and address why I crashed on it, but somehow, between starting and then stopping it, my adrenals got messed up, and after a few days of initially feeling relief from the symptoms since stopping, I feel I’m over-secreting cortisol which is causing an increase in blood pressure and anxiety. Been 2 weeks since stopping the T4 and back to 1 grain NDT which is where I was at before I started the T4. Don’t know if this is anything to do with the T4, so at a loss of what to do now. Thoughts/suggestions?
Janie Bowthorpe
An increase in blood pressure and anxiety can be more about being hypothyroid. T4-only leaves a huge body of people hypothyroid, as does staying on only one grain NDT, which is simply a starting dose from which we raise in search of our optimal dose.
Janie Bowthorpe
Mark, I’m not where I can look at the dose at the moment….but I’ve slowly brought it down after several months of a higher dose, thinking I’m probably very saturated with it.
Mark
Outside or iron/cortisol/methylation issues ( which I was already aware of), I again point back to my concern regarding L-carnitine and its double-edged sword effect that it can potentially have in cases of suboptimal thyroid function. The problem is that while I have benefited from it in many ways, I fear it may have been a major player in this latest problem with adding the T4 in that it can essentially block T3 & T4 uptake into the cells. At the same time, L-carnitine helps energy levels at the mitochondrial level, especially those with hypothyroidism. There have been no studies to determine whether just separating dosing from thyroid meds as well as increasing the dose of meds would ameliorate this issue. What are your thoughts since taking L-carnitine and dealing with your own thyroid issues?
Janie Bowthorpe
I haven’t had any changes to my thyroid with taking l-carnitine…
Mark
Just curious – what types and dose of L-carnitine are you taking?
Janie Bowthorpe
L-carnitine fumerate, both capsules and liquid.
Mark
Dose?
Mark
Well, this is troublesome: https://www.ncbi.nlm.nih.gov/pubmed/25668155
My recent elevated homocysteine levels could be due to supplementation of iron. Thoughts?
Janie Bowthorpe
Elevated homocysteine can be due to the MTHFR mutation.
Mark
Of course I realize that it’s more than just suppressing TSH, that’s just one piece and a very limited one at that (which is why I can’t stand most mainstream endos that only believe in and test for TSH/FT4 and nothing else). I’ve already achieved getting my My FT3 in the top range many times over the years. And although my goal is to always keep my level in that top range (and FT4 in mid-range), that didn’t always equate to feeling better nor did it always suppress TSH or coincide with a lower rT3. What I do feel (feel worse) is when the numbers move in broader sweeps (i.e TSH 4+, FT3 <3, FT4 <1.2).
In my case, long-term T3 (even tried the CT3M protocol) eventually led to over-sensitization of sympathetic nervous system and up-regulation of beta adrenoreceptors which then caused to a whole series of other problems I need not get into (there is plenty of research which shows this as a known side of too high a dose of T3 meds). So, not an advocate of T3 monotherapy at all after what I went through. As I stated, there was no evidence from my iron or salivary cortisol levels that indicated any problems. By the way, it was only on these last labs that my iron was slightly elevated only because I purposely boosted my iron intake; all previous serum iron labs this year were a little above mid-range. Even so, I have already done everything possible (short of editing my genome using CRISPR at some point in the future lol) I can think of to address these issues as well as my methylation defect. I live in a mold-free environment so that's not an issue and already been tested for Lyme several times over the years. There are many types of stressors can raise rT3 so I'm not convinced 100% quite yet that T4 is solely to blame, although it certainly is suspect at this point. Again, we'll see what these next set of labs reveal and maybe it'll be more clear cut depending on where my rT3 falls. In my case, I doubt it. Nothing is every clear cut with me.
Adding T4 to my NDT was pretty much the last adjustment we didn't try and that made sense from everything I had researched elsewhere and based on the natural thyroid ratio (I have tried everything else). When I first started researching treatments for hypo several years back, STTM was one of my primary go-to sources and the one I recommended to many other hypos – and still do – for those who've been led astray and frustrated by orthodox endos and need a good re-start. But for my own case, much has changed, as I've tried pretty everything advocated here, and what I read or believed in 5 years ago, per se, isn't resonating with me on all points the same as it did then for what's in the picture now. Nonetheless, that does not mean there aren't some things I still agree with (i.e. keeping FT3 in the top 1/4 of the range and FT4 in mid-range + many of the other blogs and topics covered herein).
As is obvious now, I've been through a ton of trial and error with respect to thyroid optimization – and the quest for such continues on. As with us all, and ultimately, it's one's decision as to what approach they feel works best. There is no one-size-fits all approach.
Again, many thanks for taking the time to respond and for your input.
Janie Bowthorpe
I’m glad you now understand that it’s not about suppressing the TSH as a primary goal–you were mentioning that quite a lot. The suppressed TSH is simply the “outcome” of the far more important goals–a free T3 towards the top of the range (and not pooling), a free T4 around mid-range, the complete removal of symptoms…but again, all in the presence of the right amount of iron and the right amount of cortisol–the latter as revealed by saliva testing, not blood. If one doesn’t have optimal iron and cortisol…or if one has ongoing Lyme or Mold issues, we can’t achieve that optimization, and RT3 can become a problem.
None of the above is about strong opinion. It’s based on what we’ve seen in each other for years now. STTM’s focus is all we’ve seen in each other, learned with each other.
And because of what you went through with T3, it’s a strong sign that your iron wasn’t optimal, and/or your cortisol levels were not where they should be…which is what this page is about: https://stopthethyroidmadness.com/lab-values
All of us who finally got well, Mark, have had to get our heads out of much of what our doctors were doing, out of having complete faith in ‘research’, and out of what some websites say out of misguided strong opinion. It’s solid patient experiences and the wisdom they’ve gained that has gotten people well…
Mark
Followup labs just in: Yep – rT3 did in fact increase (27) as did TSH (2.8); FT3 dropped slightly (3.4) and FT4 increased (1.7), no surprise. Does now seem to me like a strong case for the added T4 as the culprit for the symptoms either due to non-conversion this time around – or for other reasons as yet unknown. The only good news: serum iron normalized (96) and ferritin increased (68).
Of concern: homocysteine was elevated for the first time (13.6) which would indicate under-methylation (will have to adjust my supplements – increase methylfolate, methylB12 and decrease all forms of B3).
Janie Bowthorpe
Eggsactly. Underscores what I was explaining about using T4 when your RT3 was already too high. And Mark, an iron of 96 for a man is pitifully low, which also explains your RT3 problem, as explained, and could explain why you had issue with T3. Men who have good iron levels are repeatedly in the 130s. And…iron is not about ferritin. Iron is about your serum iron, which is low. Ferritin is secondary to serum iron.
You seriously need to study this page: https://stopthethyroidmadness.com/lab-values
Mark
I agree that iron/ferritin/cortiso levels need to be optimized before increasing NDT or any thyroid replacement meds. Here is a new transdermal iron patch that came out recently I started at the advice of my doc: https://www.patchmd.com/Iron-Plus-Topical-Patch.html
Maybe others can benefit from it that are low in iron and ferritin and having trouble with oral supplements. My doc says some of his other pts have noticed an increase of both their iron and ferritin that oral supplements failed to give them. I am using these now + Jarrow IronPlus + dessicated liver (heme iron). All the other ones constipate me badly.
Janie Bowthorpe
It’s not about ferritin either. It’s about (serum) iron and cortisol.
Mark
I understand what has worked for many, but we are all individuals with unique chemistries, and with mine, I can’t seem to make any sense of it since I have tried it all. I had initially started thyroid treatment on T3 monotherapy (my suggestion) in 2010 – up to between 50-75mcg – and that didn’t work out for me (did not suppress my TSH enough nor did I feel any different/better). I also went as high as 3 grains NDT + 20mcg T3 back in 2013 and it initially suppressed TSH, but did not reduce rT3, then, didn’t seem to work any longer (TSH increased). The only thing that successfully suppressed my TSH and rT3 was T4 monotherapy @ 50mcg but I wasn’t on it long enough to see if it would’ve made a difference because I had another health issue that came up during that time that spooked me into stopping it and going back on T3. I still have not found my sweet spot for anything when it comes to thyroid treatment. Again, all I know is I feel worse adding T4 at this point than when I was just on 1 grain NDT. But staying just with 1 grain NDT wasn’t cutting it either. I think I will stop the Tirosint for now and try and get back to baseline until I can get with my doc.
My only question at this point – why wouldn’t it makes sense (on paper) to try and mimic the natural T4/T3 output of the human thyroid, hence the reasoning behind adding more T4 to bring up the levels in NDT from its 4:1 ratio closer to the natural 10-15:1 ratio? That being said, you would think it’s counterintuitive to add more NDT and therefore T3! Also, NDT has rT3 naturally-occurring in it.
Sorry to rant, but this is just another one on my conundrums in my long list of conundrums.
Janie Bowthorpe
Mark, of course we all have unique chemistries. There are gray areas all over the place. But it hasn’t taken away from truths we discovered in our vast combined experiences for over 15 years now that fit the majority in these areas I have mentioned.
If T3 didn’t make you feel any better, you either didn’t raise it high enough (common mistake) or you have an iron or cortisol problem, as explained well here: https://stopthethyroidmadness.com/ndt-doesnt-work-for-me
NDT is not meant “to reduce RT3”–it’s got too much T4 in it. T3-only reduces it, and you still have to discover why it went up in the first place (or it will go up again with any T4), which for most is usually iron and/or a cortisol problem…as explained in the above link well. Some can also have a Lyme or Mold issue raising RT3.
None of the above is just about “suppressing the TSH”–by focusing on that the way you do, you are missing the real goals. With NDT, it’s more about having a free T3 towards the top of the range, and a free T4 mid-range and the elimination of symptoms–all three happen when one is optimal…which just happens to suppress the TSH. BUT the success with the latter is ONLY going to occur if you have adequate iron (yours is too high and you may have functional low iron if it’s high because of a methylation issue) and cortisol (which is not about serum, and it’s about where the saliva results fall in those ridiculous ranges).
Of course you feel worse adding T4! It was raising your RT3. You need to read, Mark: https://stopthethyroidmadness.com/reverse-T3
There’s nothing wrong with mimicking the natural T4/T3 output if you want to go to that trouble. But the thing is, Mark, we found NDT to work perfectly anyway, IF you understand the right goals, and if you adequate iron, and if you have the right amount of cortisol. T3 can also work perfectly, IF you understand the right goals (optimal seems to put patients free T3 at or slightly above the top of the range), if you have adequate iron, if you have the right amount of cortisol.
Mark
Are you aware that L-carnitine has an “anti-thyroid” effect? There are well-documented studies that show that L-carnitine inhibits both T3 and T4 entry into the cell nuclei:
https://www.ncbi.nlm.nih.gov/pubmed/15591013
https://www.ncbi.nlm.nih.gov/pubmed/11201848
In fact, it has been used as an alternative for treatment for Graves’ pts: https://academic.oup.com/jcem/article/86/8/3579/2848640/Usefulness-of-l-Carnitine-A-Naturally-Occurring
L-carnitine and thyroid hormone tends to antagonize reciprocally in human body. Urinary excretion of L-carnitine decreased in hypothyroid patients, and levothyroxine supplementation increased excretion of L-carnitine: https://clinicaltrials.gov/ct2/show/NCT01769157
In defense of L-carnitine, it tends to be deficient in hypothyroidism and has been used to treat hypo-associated chronic fatigue: http://press.endocrine.org/doi/abs/10.1210/endo-meetings.2015.THPTA.1.THR-018
I use many forms of it myself, and while I believe it has helped in optimizing cardiovascular health and energy production, I am concerned it may be worsening my hypothyroidism or possibly blocking my thyroid meds.
The there’s the problem with ALPHA LIPOIC ACID inhibiting T4-T3 conversion: https://www.ncbi.nlm.nih.gov/pubmed/1815532
But then it helps reduce endothelial dysfunction in hypothyroidism: https://www.ncbi.nlm.nih.gov/pubmed/20162509
For every pro, there is a con, enough to drive us insane. Perhaps you’ve found the right balance between the pros vs. cons when it comes to using these supplements in a hypothyroid state? If so, please elucidate.
This is obviously a conundrum for anyone who is borderline hypo or worse.
Thoughts??
Janie Bowthorpe
The challenge for all us is when this study shows “this” or another study shows “that”–you are right. The balance has been in simply bringing up low levels of anything, then if use continues of a supplement because one’s level tends to fall, to only use it moderately.
Mark
Wanted to get your take on this:
As per my doc and my own research (based on the fact that the human thyroid T4:T3 ratio is ~ 14:1 and NDT\’s T4:T3 ratio is 4:1), we decided to add 25mcg Tirosint to my dose of 1 grain desiccated thyroid (had been on this dose for last 3 years), to help further reduce my TSH and rT3. About 3 weeks into this combo, I began experiencing a ramping up of joint pain and muscle aches in prone areas (neck/back), fatigue, mood swings, and feeling a sense of tightness around throat when speaking. These symptoms have continued on/off since (now @ 7 weeks). I was thinking that these symptoms were due to an adjustment and that it will take my body a few weeks to find equilibrium again as the conversion enzymes will need to adjust to accommodate more T4 in my system, but now, I\’m not so sure because the symptoms aren\’t subsiding.
Latest labs (2 hrs after taken thyroid meds) came back: TSH: 2.02, FT3: 3.50, FT4: 1.50, rT3: 25, ferritin: 52, serum iron: 162, TIBC: 326, iron sat: 50, serum cortisol: 12.
On a side note, I experimented 5 years ago with T4 only and had no problems converting and none of these symptoms. I know that too much T4 can shunt to rT3, but so can too much T3 (hence, the reason we chose to boost T4 only), but with such a small dose of T4, I am perplexed as to what\’s going on.
Thoughts?
Janie Bowthorpe
(If you see this twice, it’s because my first reply to it doesn’t seem to have gone through.)
First, understand that RT3 comes from T4, not T3 as you stated. So by adding Tirosent to NDT when you already had rising RT3 was destined to make it higher…thus the increase in your symptoms. So, informed patients instead find out why the RT3 is high, and correct that reason. Study this page carefully: https://stopthethyroidmadness.com/reverse-t3
In fact, because you have been left severely underdosed for so long on only one grain (which is simply a starting from which we all raise in search of our optimal dose), no wonder you were having rising RT3. Patients left underdosed like that end up with either an adrenal problem, or an iron problem, or both. I talk about those two here: https://stopthethyroidmadness.com/iron-and-cortisol
Second, informed patients never to a serum cortisol. It needs to be saliva testing. Study this page carefully: https://stopthethyroidmadness.com/saliva-testings
Third, your iron and % sat are too high compared to where men normally fall when optimal, along with the low ferritin…all which point to you having a methylation problem that needs discovery and treatment. Study this page: https://stopthethyroidmadness.com/mthfr
I know all the above will be a lot to read, but if you want to get well, it’s important. Plus you need to see if you make your doctor far more knowledgeable….
Mark
Thanks for getting back so promptly.
As with many issues in the area of alternative diagnoses & treatments, there lies much controversy and conflicting viewpoints which don’t make it easy for even veterans of the game such as myself – or even seasoned professionals.
Cases in point:
– According to tiredthyroid.com – too much T3 can also increase rT3: http://www.tiredthyroid.com/blog/2015/08/11/high-reverse-t3-rt3-can-be-a-sign-of-too-much-t3/
There are a ton of things that can cause elevated rT3 outside of thyroid meds as we know. For example, a strict diet (low carb/very low carb/calorie restriction/fasting) which I have been on probably has an effect here.
– My doc feels that saliva cortisol testing is wholly inaccurate/unreliable (he has sent numerous samples from the same person done at same date/time and sent them to multiple facilities and received a different result from each). Here’s a brand new study which shows accuracy and reproducibility is highly dependent on the qualification of the lab: https://www.ncbi.nlm.nih.gov/pubmed/28903752
My take on saliva testing: I have done dozens of 4x saliva cortisol testing throughout the last few years through reputable labs (i.e. Quest and LabCorp). In combination with serum testing, it seems to provide a more complete picture than reliance upon just one method. That plus matching it with my own diurnal rhythm has shown me that there is value in both methods, however, I think there is also validity in what my doc expresses in that there are a lot of questionable facilities out there than perhaps many of his other patients are using, hence, his opinion. At the end of the day, there was nothing on either serum or saliva testing that warranted treatment.
Since discovering I had a methylation defect back in 2012, I have been treating my MTHFR C677T +/+ polymorphism with a variety of supplements (methylfolate, methylB12, P5P, choline, TMG, NAC, etc.) to keep the pathways functioning and keep homocysteine at <8 which they have been. Last I checked my copper and it was normal. Despite taking supplemental heme iron and increasing methylation, I still have a problem boosting serum ferritin. I have also been tested for internal bleeding and everything was negative. So, can't figure this one out. In all my research, have not read anything showing a clear relationship between a MTHFR defect and low ferritin specifically. If you have anything on this, please post a link.
I am awaiting a new set of labs to see where I'm at now (last labs were done last month). If the rT3 has increased, that would support the argument that adding in T4 is making me more hypothyroid. Bottom line is that despite the conflicting science and labwork, my body doesn't lie. Since I started T4, I started feeling worse, period. I will ask 3 different sources and get 3 different opinions. If the rT3 is where it usually is (pre-T4), then I will really be stumped!
My doc came from Mary Shomon's blog and is one of the top research endos in the country. He doesn't know everything (no one does), but is far more knowledgeable than any others I have hired or read about despite being more evidence-based/mainstream, as he is also open to alternative modalities which is why I sought him out.
Janie Bowthorpe
Mark, Stop the Thyroid Madness is not about viewpoints or even strong opinion. It’s focused on repeated patient experiences over the years and the wisdom gained from those repeated experiences. And for any of us who have high RT3, taking more T4 raises it. Additionally, being on T3 lowers it, not raises it. There are websites totally wrong about this.
And rising RT3 is usually connected to an iron issue (if iron is high due to mthfr, we are in a low iron state) and/or cortisol issues as revealed with saliva, not blood.
As far as saliva vs serum, we have repeatedly seen that saliva gives us the most accurate results. For example, sometimes serum would be high, yet saliva showed that time of day was actually low, and so did symptoms. Or vice versa. It was dumbfounding as we were seeing that!! Saliva is measuring what is available for use, which serum is not. Serum is stated to be 80% bound, and that’s the minimum. ALSO, saliva gives important info about what is going on at four key times in a 24 hour period. That is also important. You also need to compare all results to this page: https://stopthethyroidmadness.com/lab-values
Iron correction is not about “boosting ferritin, the storage hormone”. It’s about “boosting serum iron” to where we know optimal is (where men usually are when they have no iron issue). Ferritin will follow, but only if heavy metals aren’t up there. There is suspicion by our too-high iron that you do have too-high metals and the latter is not just about copper.
Correct–your body doesn’t lie, and adding T4 should speak volumes to you as to what happened….
Docs are human, Mark, and even those recommended can be very wrong about certain things. We see that constantly. It’s the very reason Stop the Thyroid Madness was created!
It’s honestly up to you, Mark. STTM is patient experiences and the wisdom gained for 15 years now. It’s solid for that reason.
Irina
You say that your results have nothing to do with your thyroid but surely you know that thyroid is a major regulator of mitochondrial function along with cortisol and estrogen. When I was hypothyroid my organic acids were much worse than when I went on thyroid hormone. Carnitine and B2 did absolutely nothing to improve my fatty acid metabolism, only T3 did.
It is possible that people with CFS from mitochondrial dysfunction can only press on that thyroid gas pedal for a certain period of time (e.g. living in hyperthyroid state) – weeks for some or years for others like in your case – but ultimately the dysfunction will catch up, and perhaps even leave us worse off due to all the extra strain on the mitochondria which the body was trying to prevent in the first place. It is no secret that T3 has been used for CFS patients for decades and it usually only works for a while and then stops. (Of course, you also want to make sure that you are not taking something that interferes with your thyroid absorption, like cholestyramine or whatever it is that you were using for mold detox.)
I am curious how many years you felt better on thyroid before you became worse again so that I have some idea what to expect for myself.
Janie Bowthorpe
Irina, I’ve been optimally treated on NDT for 15 years. It wasn’t my thyroid. Turns out that all of this is due to what is called CIRS or Chronic Inflammatory Response Syndrome, and the latter is because of the mold, plus having what’s called the dreaded HLA gene, meaning my body can’t get rid of the lingering mold itself, and I need extra help. I am working on that extra help now, and should be able to reverse most of this before the end of the year.
And by the way, people don’t become “worse again” on thyroid meds like NDT or T3 if they are optimal.
Monica
Hi!
Thanks for all the information and thoughts you are sharing!
I haven’t read it all yet – I suffer from ME and have been sick for many years so I have to read a piece now and then :-).
I wonder, have you read the recent norweigan study that proves that ME-patients have difficulties to transform cell-glucose to ATP? There is an enzyme, (pdf-enzyme??) that doesn’t work well. That leads to energy-deficiency in the brain, and the glucose turns to laktate instead of ATP wich cause physical fatigue, and in the end inflammations in the body… I’m sorry I can’t explain it better, I’m swedish and I’m dealing with a foreign language – and ME! – it’s not easy to get it right!:-) I hope you can understand my “swenglish”! Please google on “norweigan study+mitochondria”, to find out more, it should give you some article to read.
Janie Bowthorpe
Is this related to the study, Monica?? https://www.healthrising.org/blog/2016/12/27/chronic-fatigue-syndrome-energy-problems-fluge-mella-study/
Dara
Hi Janie. As alwAys, you are my hero for sharing all your research and experience!!
What is your current protocol for getting rid of the mold from your body (anti-fungals, oxygen, etc)? Are you working with a mold specialist (CIRS)?
Janie Bowthorpe
Cholestyromine. Helps to remove what my body didnt.
Katey
Did your OAT test from Great Plains not show the mold issue? Thank you!
Janie Bowthorpe
Only indirectly. i.e. it showed I had brain inflammation.
Stephanie P
Hi, I am fairly new to all of this. How did you find out you have mold issues? I know I have Candida, but wonder if mold could be a problem as well?
Thanks
Janie Bowthorpe
Hi Stephanie. I already know I had a mold issue because of being deeply exposed to mold in 2013 when leaf blowing via kicking up a lot of wet dirt and breathing it in. That put me in bed for THREE months. I thought I finally got over it with treatment….but what I didn’t now is that I had never gotten rid of the mold even though I felt better, and figured that out in multiple ways. One way was seeing that I had brain inflammation in 2016. i.e the Great Plains OAT had a part called the Quinolinic / 5-HIAA Ratio. With a range of 0.42 – 2.0, mine was 2.2. And symptoms fit—I was having word recall issues. Then I did specific tests which proved it…i.e. my C4a was high: 5084 (0 – 2830) while C3a was not—classic for mold. I also tested positive for being part of 24% of the population that doesn’t get rid of mold easily, i.e. the HLA DRB, DQB Panel which was positive. Finally, my Matrix Metalloproteinase-9 (MMP-9) Inflammatory marker was HIGH.
Karin
Thank you so much for your answer..
How do you know you’re copper dumping..? I don’t really know if that is what started my problems but in some way I think it’s related..my main problem is physical fatigue, heavy arms and legs, easily tired both physically and mentally..I did start with b6 and zinc in fall 2015..probably I started dumping copper after this and just couldn’t get it out of my system? The spring of last year I started to get tired, losing hair etc
The real as kicking fatigue can the fall of 2016 and I just don’t seem to be able to regain my energy…I know I have some mutations regarding my mitos but unfortunately q10 makes me so, so tired..it’s like hitting a wall..
Nadh seems to give me some energy so that’s all good..
What about this nose spray? Where do you buy it..?
Janie Bowthorpe
Hi. I can only speak for me, but my stools automatically turn copper color and stay that way the entire time I’m detoxing copper. That ends when my body stops. I also become totally exhausted after a week or two and that lasts the entire time, too. The nose spray is only for brain inflammation, which for me was caused by mold inhalation…and that I never got rid of the mold in me all this time.
Victoria Fonseca
“But there is information that it could raise mercury, and I have plenty of fillings. My hair test did not show high mercury, so unsure what to think. May not use it.”
That’s all I needed to read. Mercury will not show in hair tests in most people. Especially those with detoxification SNP’s like MTHFR. Andrew Cutler had “counting rules” on his website where you can tell by mineral displacement that you have mercury toxicity. I also had a toxic mold exposure that nearly ended my life and I have been able to recover but still have lingering issues and discovered in December ( by Oligio Scan) that I am high in Mercury, Lead, and Cadmium among others. I had my amalgams safely removed at the beginning of treatment for mold as one of my teeth was showing a charge on an oral galvanism test. I would check your hair test again but consider a tri-test or heavy metals test by Quicksilver. I have had quite an education in environmental medicine and Biotoxin illness these last few years and I am convinced that heavy metals play a starring role and open the door and allow other pathogens such as EBV, Lyme, mold, etc to cause issues. Heavy metals derail our detoxification systems and immunity. Some experts say they account for 90% of chronic illness. Considering when most of these complaints were documented after the industrial revolution, I think they are on to something. I really would consider having your amalgams removed by an IOAMT dentist and evaluate your supplements which may be chelators and moving metal around causing this distress. I would not take ALA, chlorella, cilantro, etc. Redistribution is dangerous and painful. Hoping you are able to get to the root cause of your health issues.
Su Fairchild, MD
Phosphatidylcholine is very beneficial for mold issues. Phoschol helps kick the mold biotoxins out of your cell walls.
OAT prices can vary from $240 to $381 depending on which lab and which profile. But a basic OAT is not more than $299 if ordered through a practitioner (unless they tack fees on). If self-ordered through a third-party website, there are also fees tacked on, as the company has to pay their doctor to order it for you. I may catch hate for telling you this, but how to tell if your doctor is jacking up test prices can be by who you pay; if you pay the lab directly, chances are you are paying the fair going rate; if you pay the doctor’s office, changes are you are paying extra. This is only a rough guide, and does not always hold true.
Janie Bowthorpe
Actually, I was on high amounts of Phosphatidylcholine for many, many months and yet still found myself with mold in my body causing inflammation in my brain and a high c4a.
Karin
Hi, just wanted to ask how you are feeling from the nadh now a couple of months later? I’m to do a oat test and I will def use you research when going trough mine..your story sounds familiar to mine and I’m also trying out nadh soon. I’ve tried q10 in the past but left me tired..starting to think I lack the cofactor for it, nadh….
Janie Bowthorpe
I can’t say for sure what I physically feel from the NADH, but I’m extremely impressed by what I read about it, and will stay on it the rest of my life for that reason. It’s also in a cutting edge nose spray I’m using to treat brain inflammation (found that out with the second OAT test by Great Plains)–the brain inflammation clearly related to the fact that I still have mold in me.
FYI and related to my mito issues: my body stopped the second copper detox late last year, and when I do stop, the difference is stunning. I regain energy; feel so much better. I am clearly someone who detoxes like a frantic mad man, thus the extreme fatigue. Are my OAT-revealed mito issues still there even tho I feel great again? Yes. Because even tho I’ve regained my energy and feel-goods since I stopped detoxing, I am unable to go lower than 1000 mg liquid Ubiquinol CoQ10 without having problems, including breathlessness. With it, I have great energy.
What I HOPE is that as I continue to take all the supplements I do based on my OAT results (and I took way more than they recommended for months, then went down), plus get the mold spores OUT of me this time, I might see my mito heal someday and not need quite so much ubiquinol. We’ll see. To me, I’ve either “inherited” mito issues (which were made worse by the mold, then the copper), or I simply “acquired” mito issues, which I could reverse. I do plan on redoing my OAT this summer, or after I think I have achieved getting this mold out of me, just to see.
The interesting challenge by doing the OAT test is figuring which blockages/spills are simply caused by certain inadequate levels of nutrients (and thus easily turned around with those nutrients), and which are inherited and/or caused by damage. I can tell that my carb metabolism issue is inherited by looking at my paternal side, and think I’ll need to take enzymes with any meal for the rest of my life because of it, plus Biotin the rest of my life for the inherited leucine disorder that OAT taught me I had.
Inom
Hi Janie,
Thanks for sharing your story. As a Biochemist, I would say metabolic pathways work in a vicious cycle, once you are low in one, eventually you get more and more deficiencies and If you could jump start that cycle again and If you know the key factor like gene or a where did all started, supplementing just that element will be sufficient. I totally agree, however, to start with, It is good idea to take all deficient cofactors/vit/minerals. I am also suffering from multiple symptoms including histamine intolerance and I personally believe fixing micronutrients imbalance is the key.
I am planning to go for OAT test. Would you mind sharing how much it is going to cost out of pocket?
Thanks again
Janie Bowthorpe
$350 +-
Stephanie Mace
Hi Janie. Did the organic OAT from My Med Labs include B vitamins? From reading it looks like only the test from Great Plains Labs includes vitamins. Were you able to order the Great Plains test on your own? Thanks so much. Super helpful article!
Janie Bowthorpe
Only the Great Plains. Yes, I always order my own.
jc connor
How do you know which OAT testing company to go with? I see you mentioned two. Sounds like you like Great Plains better??? What about Genova NutrEval FMV? Note: I will have to pay outta pocket.
Janie Bowthorpe
No, didn’t like one better than the other. Both were valuable. Both have some tests which were the same; both have some tests different from the other. Don’t know anything about Genova NutrEval FMV…yet.
Xylinda
I’ve just done nutrieval… Will keep you posted in ftpo groups
Jonathan Wadder
Hello Janie!
Thank you for sharing your story, very enlightening. Just one question, can you link us or do a small writeup of how did you know you had copper excess (tests, etc) and what did you do to fix it?
thank you!
Janie Bowthorpe
Here’s information you are asking for: https://stopthethyroidmadness.com/2016/08/01/high-copper/
And I’m going to do an update on this OAT post soon to show everyone how utterly valuable the OAT information is in your health and well-being, or like me, when you are trying to figure out what is wrong and how to treat what is wrong.
Anita
Hi Janie, Thanks your for this blog.
How are you doing with the NADH?
I’m homozygous for all the NDUFS7 genes too so I consider the NADH.
Thanks
Janie Bowthorpe
Doing great with it. Don’t notice anything obvious because I’ve been on so many supplements to treat all this, but after everything I read about it, I’ll stay on it my entire life.
Beverly Losacco
I just had an Organix Comprehensive Profile -Urine done. My Chiropractor was the ordering physician. I’ve watched the videos while waiting for an adjustment in his office. The regiments people were put on and the changes in their bodies in 30 days was amazing. I cant wait for my meeting today to see what my body needs. I believe all Maximized Living Chiropractors offer this. He has a live talk show you where you can ask Dr. Ernst any questions you might have. If anyone is interested and live in Charlotte NC you can see: Dr. Aaron Ernst Cornerstone Chiropractic / Here’s to another Journey and cant wait! I hope you have a Dr giving you the right dosages of what you need to replenish what your body needs to function correctly. Thanks for the article! Cant wait to read the follow ups on your progress and I will share mine as well.
Brooke M.
Hi Janie – I just got my Organics Test results back today and my results are remarkably similar to yours – I’m wondering if you still stand by this protocol of supplements above and if your Thyroid Function has improved? I have VERY low T3 (Total T3 of 65) and VERY low Ferritin (was 13 and now 25) – I am absolutely exhausted all the time and trying to figure all of this out – Your feedback would be GREATLY appreciated!
Janie Bowthorpe
Hi Brooke. Well, my OAT results had nothing to do with my thyroid. They were more about my mitochondrial/energy function mostly, and somewhat about other issues. And yes, the supplements made a difference. But I took much higher amounts than the Organix OAT recommendations. And using higher amounts caused two of my high levels to come down (I will eventually do an update). I did a second OAT via Great Plains in May of 2016, two days after a major crash, and it revealed why I need MUCH more CoQ10 than was recommended, especially since I put two and two together that I also have three homozygous CoQ10 mutations. I moved to that much higher amount, and my life changed within a month in the energy levels area.
I will be doing a third OAT by the end of the year or beginning of next to see if other areas have improved.
For your thyroid, there are great groups listed on the following page which can help: https://stopthethyroidmadness.com/talk-to-others
Brooke M
Thanks so much for the reply!
Paula Lerner
Re Co-Q10:
If you have not already found it, check out the Reduced Form of Co-Q10, UBIQUINOL (Kaneka QH)
It is significantly better absorbed better absorbed, especially as we age. Best to switch to at 40 years and up. At any age it is better, just a bit more expensive.
Vitamin C is also very poorly absorbed as Ascorbic Acid. Plus it does not cross the blood Brain
Barrier. Lyposomal C is better, but it gets too be too much work to make quickly and you still need a lot of it to drink.
I just came across another form, DHA Acid /dehydroascorbic-acid, a reduced form and very absorbable, it does cross into the brain. Every cell in our brain and body need it, I am still researching it…..