Organic Acids Test, Mitochrondrial issues, CFS

[grapes]

Thank you @grapes . I have taken differing amounts over the years of supplements as some 5 or more years ago I first had the mitochondrial tests done by Dr Myhill, and tried injecting myself with the B12 and magnesium for a while. Some years later I repeated the tests with a different Dr, (the one who did the OAT tests) who reckoned that I had some improvement in results, but to me the feeling subjectively was no great improvement. At that time (around 3 years ago I began to increase my supplement intake which had lapsed somewhat). However, I have lost heart somewhat in the last year though I do take around 10 recommended supplements still .....I suppose I do wonder if the supplements make much difference even in large amounts if perhaps the body is not able to utilise them fully. Recently my migraines have improved though so maybe something is going on!

Mermaid, re: your Krebs Cycle Intermediates being low---I've read that it means insufficient amino acids. I'm assuming you've taken those?? I only had one so low that it didn't register--fumerate. Am taking amino acids for that.

And here's something interesting I found:

Amino acids can be converted via the Krebs’ cycle to glucose for energy or for storage as glycogen and fat. During times of increased stress due to trauma, exercise, starvation and disease states, amino acids can be catabolized into intermediates to produce energy for muscular contraction. This is why taking free form amino acids can boost energy levels and help to prevent hypoglycemia. Additionally, low levels of particular Krebs’ cycle factors may diminish amino acid availability and require supplementation to generate energy and correct metabolic dysfunction.
http://nutritionreview.org/2013/04/krebs-cycle-intermediates/​

And since we have messed up energy, we change to making excess lactic acid. That SO fits me. Is that you? Do you take supplements to buffer it?

As far as your non ulcer dyspepsia...have you ever had your stomach acid levels tested? Are they low? Do you have hypothyroidism? If so, how are you treating it?

I've never tested for carnitine...just had the OAT say I needed it for both high levels. I noticed no difference in taking it for several months....but I hadn't yet taken the other supplements which I started about two weeks ago, including raising my CoQ10. So we'll see.

 

[mermaid]

@grapes thank you for your comments.
I don't think that I have ever supplemented amino acids, no. What form do they usually take? (ie what are they called as supps?). I did a quick google and I see you can buy them as powders as 'essential amino acids' - is this the kind of thing? Do you have any recommendations?

I think I was suffering from hypoglycemia to some extent without realising it, as I read that getting migraine aura first thing in the morning (as I was doing last year) was nearly always caused by this (hypoglycemia). I have tried to eat something last thing at night, and it's vastly improved recently. I do get migraine aura at some other times, but not so often.

I did try some Carnitine Fumarate but had the usual problems with the upper gut pain so had to stop that one.

'excess lactic acid'......I don't think that is my major issue, unless I am in a bad place as I have been since Christmas but now hopefully emerging (I am always bad in Jan/Feb). If I try to do much exercise when I am in that state then I will end up with a lot of muscle pain, but at other times I can be reasonably OK, unless I go over my limit. (e.g. in the summer I do gardening more, and I am also in a dance/theatre group for people with disabilities......if I try to do them both 2 days running then I will suffer badly).

I am not convinced that the Non Ulcer Dyspepsia is (in my case at least) directly affected by the acid levels. I did spend several years taking Betaine HCL capsules due to my various gut issues at the time, but came to the conclusion that I had probably corrected that aspect as much as I could, though I do still use Digestive Enzymes. The upper stomach pain issue seems to be separate and seems to be a kind of hypersensitivity in some way that is mysterious even to those doing research on it (and there are not many!). If I keep to a bland diet then it's much better generally but oh so boring.

I do have hypothyroidism though - had it for 20 years (diagnosed before the ME and there seems to be an overlap with some of the symptoms which is tricky). I was on T4 for 17 years, but did a lot of my own research and had tests done and persuaded an Endo to let me try T3 which I am now on totally. It's not the answer to it all but seems better than the T4. I take a little Pregnenolone from time to time to help with the adrenals issue.

Are you seeing improvements? How long have you had ME? Are you young? I have had ME for over 10 years now and had a slow slide into it, so I think it would be hard to correct it all, and of course I am stuck with the hypothyroidism now too. I do have another autoimmune condition but mostly it's mild and under control.

 

[grapes]

@grapes thank you for your comments.
I don't think that I have ever supplemented amino acids, no. What form do they usually take? (ie what are they called as supps?). I did a quick google and I see you can buy them as powders as 'essential amino acids' - is this the kind of thing? Do you have any recommendations?

Hi Mermaid. I use this one based on the good reviews and seeing others recommending it: NOW Foods Amino Complete.

Glad you lessoned your migraine. Tell me---when you get out of bed in the morning, do you feel relatively refreshed and ready to go?? If you don't, you probably have low cortisol that needs discovery and treatment via ordering a saliva adrenal test (not a blood test!). A cortisol problem could be contributing to your ongoing fatigue. i.e. we have to have the right amount of cortisol to allow thyroid hormones to get to the cells. Also, if saliva testing proves you have low cortisol, taking Pregnenolone "here or there" isn't enough, I've noticed. People have to find your right physiologic amount of cortisol and stick with it until you correct the issues that contribute to it.

As far as the T3 you are on (which is a good thing!!), is your free T3 at the very top of the range?? That's where people on T3 state it is when they are feeling optimally treated.

As far as the upper gut pain you've had on carnitine...have you tried taking it with an acid in your drink, like 1 T. lemon juice or apple cider vinegar? So often, that pain is due to low stomach acid.

As far as me, no, not seeing improvements yet--have only been on key supplements for a few weeks. But my situation is different. I've probably had an insufficient Krebs Cycle for years and years and didn't know it. I just knew I didn't have the stamina of others. It wasn't bad enough to cause a CFS/ME diagnosis. And it seemed a lot better after I got on natural desiccated thyroid and found my optimal dose. The mito problem only got bad because I detoxed high heavy metals last year, and I "think" that made my mito issue far worse. And again, I didn't know that was the case until I overdid it a few weeks ago...and BAM, I've been grossly fatigued since then every single day. So I've done a hefty amount of research, and the latter put me on these supplements on top of the l-carnitine, molybdenum, manganese, chromium, vanadium and coQ10 I have already been on: Digestive Enzymes, Amino Acids, back on magnesium, l-carnosine (to buffer my high lactic acid, creatine (said to help make ATP), Alpha-Ketoglutarate (an intermediate), LOTS of arginine, NT Factor (said to repair damaged mito--just started that yesterday) and Curcumin (said to boost glutathione, since low glutathione can be the reason for my high Citric Acid.)

 

[grapes]

Also found this interesting, which is the reason I got on NT Factor (which is the same as the LRT they mention):

Improve Mitochondrial Function (CFS) crossover study:
"In a subsequent cross-over study the effects of LRT on fatigue and mitochondrial function
were monitored in patients with moderate to severe chronic fatigue. There was good
correspondence between reductions in fatigue and gains in mitochondrial function. After 8
weeks of LRT with NTFactor, mitochondrial function was significantly improved, and after 12
weeks of NTFactor supplementation, fatigue was decreased by 35.5% (p<0.001), and
mitochondrial function was found to be similar to that found in young healthy adults (26.8%
increase, p<0.0001). After 12 weeks of supplement use, subjects were placed on placebo
for an additional 12 weeks, and their fatigue and mitochondrial function were again measured.
After the placebo period, fatigue and mitochondrial function were intermediate between the
initial values and those found after 8 or 12 weeks on the supplement, indicating that continued
supplementation is required to show improvements in mitochondrial function and maintain lower
fatigue scores."

Nicolson 2014 - Use of Natural Supplements to Improve Mitochondrial Function (CFS)

http://functionalfoodscenter.net/files/81845995.pdf

 

[mermaid]

Hello @grapes thank you for the tip re the Amino Complete. I see they also do it on Amazon UK.

Yes, I have already done the Saliva Testing (3 times actually over the past 5 years or so). I was low on the first test, but had improved a bit the 2nd one after trying various approaches re adrenal support. Last year I was back to the same, and got some advice from Dr Myhill re the situation after the 3rd test, and she suggested the Pregnenolone. I do take it consistently over months but I am not keen on being on it all the time, so I stopped in the summer for a bit (I pick up in the summer anyway). I restarted it after Christmas as I knew I was likely to be low again then, and am still on it for now.

I have read incidentally that T3 only can be rough on the adrenals so I suspect that in some ways it's not ideal for that. I had my FT3 tested last year unexpectedly at the hospital, and it was over range, but it was a faulty test as I had just taken my dose. The next time I made sure I had not taken my dose for over 12 hrs and it was pretty good. I did recently up my dose of T3 for a bit, as I was feeling so tired, but I began to feel unwell on it, so am back to the dose I was on, which is 55 mcg over 3 doses. Unfortunately they don't allow NDT on the NHS here, and as I am lucky enough to get T3 for free I have stuck with it.

No I didn't take the Carnitine with an acidic drink but at the time I was taking it initially I was on the Betaine HCL capsules. I did used to have a lemon drink every morning. I also have some of the ACV with my salad each day at lunchtime, and I know it's good for you. I am dubious about whether the pain I get with Non Ulcer Dyspepsia is related to the acid issue though I have to say.......I think it's much more to do with the nervous system over reacting to something it perceives as an irritant (ie acidic foods in particular are a problem though not lemon juice as the body sees that as alkali I believe). I have tried everything and anything over the years I have had it, and nothing has helped really other than the diet that excludes all the things that affect it (and there are a lot of things......).

Thank you for that link too - I haven't read that before although I did look into NT factor at some point. I think I probably didn't pursue it because I had been on so many things and it's pricey. However it does look worthwhile trying. I hope that you improve soon on this regime. I may well give the amino acids a try at any rate.

My own Krebs Cycle was clearly not working well for several years before I began on some support (I have had ME at least 10 years) and though I have improved in some ways, there is always something else popping up, and knowing I will go downhill in Jan/Feb is depressing as that happens each year now. Also I do have a wall beyond which I do not really improve even in the summer.

 

[grapes]

No, it's not that T3 is rough on the adrenals. The adrenals need T3 to function well!! In fact, it's those on T4-only who get adrenal problems, probably because they are totally dependent on conversion of T4 to T3 and thus, they aren't getting enough. It's when you take "too much" T3 when you already have adrenal insufficiency that it's rough i.e. when you raise T3 when you have low cortisol, the T3 starts to simply rise in the blood and not get to the cells. That's called pooling i.e. https://tinyurl.com/zvk799f. There is even a protocol called the Circadian T3 Method that uses T3 in the early morning hours to improve cortisol release upon wakening. Here's info about it: https://tinyurl.com/zude8n3

Sounds like you do have an adrenal problem that's never been properly treated? Stop the Thyroid Madness has a revised STTM book (has a lot of people on the front) which in chapter 6, explains what patients learned repeatedly and in research in the proper use of HC (hydrocortisone) in treating low cortisol. Might want to explore that information and decide for yourself. It's about finding one's right physiologic dose using daily average temps and more. It's important because we can't get out of our hypothyroid state without having the right amount of cortisol!

I'm sorry you have to deal with January and February.

 

[mermaid]

@grapes I meant that T3 ONLY can be rough on the adrenals - I certainly agree that it's good to use T3. I couldn't remember where I had read that but in fact STTM say on their page 'but T3-only is a rougher treatment'. Maybe at some point I should give NDT a try as I have tried everything else but changing thyroid meds I have found is quite disruptive and it takes a while for the body to settle down so I would need to pick the right time.

Yes, it's likely that my adrenals are not perfect despite my best efforts. I have been trying to fix them for about 4 or 5 years now, and my herbalist does give me some things in my mix to help with that (liquorice for example). I think they are better than they were but getting it right is not easy when there are a lot of things going on. I was on quite a low carb diet for quite a while, but decided to increase a bit, and it's interesting that my migraine aura have reduced (maybe as a consequence re the blood sugar issues).

I did try the Circadian T3 method a few years back (I bought Paul's books and joined the FB site), but it didn't seem to make a lot of difference for me. I did decide to try it again a couple of years ago, but waking myself up and then trying to get back to sleep was a nightmare and made me feel really ill!

Yes, I think it could be useful for me to buy that STTM book as I have been on their site but I am sure there must be more info in the book. It's very difficult to find actual people to help with these issues in the UK.

 

[grapes]

Oh!! That's not what "rough treatment" meant. It means that since one is only giving themselves only T3, it has a short half life, so you have to give it to yourself at least three times a day, and learn when you need to give yourself each dose based on how fast you metabolize the T3. i.e. with T3-only, there is no T4 to convert to T3 for them. But the "rough" is just want patients have reported on T3-only compared to NDT, but it's still a viable option if needed.

But whether T3 or NDT, patients have reported learning that it's important to have the right amount of cortisol and the right amount of iron in order to properly raise either T3 or NDT to find one's optimal dose. If those two aren't optimal, patients report rising RT3 when raising NDT, or pooling of the T3 when raising.

I think Chapter 6 in the revised STTM book will help you learn how patients successfully treat low cortisol. But it's just information and each person has to decide in working with their doctor.