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Methylation started. What are the essential blood tests one should have?

Xara

Senior Member
Messages
135
Location
The Netherlands
Okay, taking B12 and methylfolate. Things have started, cycles are going, the machine is puffing, but it may go wrong when a deficiency or an excess pops up. So testing on a regular basis would be a wise and hopefully easy thing to do, I guess (apart from noticing changes in mind and body of course). But what are the essentials, the imperatives? Which blood tests should be done? And when, every six months, every three months?

Minerals:
Zinc, copper, selenium, magnesium, calcium, potassium?

Vitamins:
B2, B6, C, D?

Any ideas?
 

AFCFS

Senior Member
Messages
312
Location
NC
Serum B12 is not an accurate test for patients with ME/CFS as it lumps together all types of B12 whether active, inactive, oxidized....It doesn't give you an good idea what your functional B12 is.

Rich used to suggest testing methylmalonic acid--an organic acid--which will give you a better idea of your B12.

I had a doc recognize this as well. Per @Xara's question, may help to look into it the Methylmalonic Acid test:
How is it used?
MMA may be ordered to help diagnose an early or mild B12 deficiency. It may be ordered by itself or along with a homocysteine test, as a follow-up to a vitamin B12 test result that is in the lower end of the normal range.

Some researchers have suggested using MMA as a screening tool, especially among the elderly, who frequently have B12 deficiencies and may have few recognizable symptoms. However, this use is still controversial in the medical community and only a few doctors are using MMA for this purpose. MMA testing may not be suitable for monitoring because it is subject to variation and results do not reliably trend up or down in response to B12 treatment. Though it is a very sensitive test in indicating a B12 deficiency, it is not specific enough to provide a firm diagnosis.

Occasionally, specialized MMA testing may be ordered to help diagnose methylmalonic acidemia, a rare inherited metabolic disorder. Newborn screening programs in all 50 states in the U.S. now require testing for this disorder (see Newborn Screening).

When is it ordered?
Methylmalonic acid is not ordered frequently. Until there are more data supporting a consensus of its clinical usefulness and long-term benefits, it will probably not be routinely ordered by doctors.

However, MMA may be ordered, sometimes along with a homocysteine test, when a vitamin B12 test result is in the lower portion of the normal range, especially if a person has symptoms associated with B12 deficiency. An MMA test also may be ordered as a follow-up to an elevated homocysteine level if the two tests are not ordered together.
MMA testing may be ordered when a doctor suspects that an acutely ill infant may have inherited methylmalonic acidemia.

What does the test result mean?
If MMA and homocysteine levels are increased and the vitamin B12 level is mildly decreased, then an early or mild B12 deficiency may be present. This may indicate a decrease in available B12 at the tissue level. If only the homocysteine level is elevated, then the person may have a folate deficiency. If both MMA and homocysteine levels are normal, then it is unlikely that there is a B12 deficiency.

Moderately to severely elevated levels of MMA may be seen in infants with the rare inherited disease methylmalonic acidemia.

A decreased level of MMA is not common and is not considered clinically significant.

Is there anything else I should know?
An elevated MMA test may indicate a B12 deficiency, but the amount of MMA measured does not necessarily reflect the severity of the deficiency, its likelihood of progressing, or the presence or severity of any symptoms.

If an individual has kidney disease, he may have a high level of MMA in his blood. If the kidneys are not functioning properly, they cannot properly eliminate MMA in the urine, causing MMA to accumulate in the blood.

Some studies have found a high variation in MMA levels when they are measured over time.
 

Xara

Senior Member
Messages
135
Location
The Netherlands
Hi AFCFS!

Your clever remarks about having B12, MMA and Homocysteine checked sure are useful to people who are on the verge of starting with methylation I think. I had them anyway, and it turned out I had a B12 deficiency, a normal MMA and and an elevated homocysteine (and a lot of symptoms that match B12 deficiency). There may also be other tests perhaps that are smart to have done before starting taking tablets/capsules.

Especially when talking about B12: before starting taking tablets/capsules. You mention:
MMA testing may not be suitable for monitoring because it is subject to variation and results do not reliably trend up or down in response to B12 treatment.
Doctors told me that as soon as one takes a B12 supplement the serum B12 test, the MMA and homocysteine tests will be affected and thereby pretty much useless; chances are they won't indicate a B12 deficiency anymore thanks to the extra intake of B12. They added that it might take several months before retesting will show that you indeed have problems when it comes to B12.
So yes, MMA seems unsuitable for monitoring.

The thing I wanted to concentrate in this thread however are the testst that are not once only, e.g. before getting the methylation going, but the tests which are wise to have on a regular basis, during the time you have started taking the basics.
I've read here and there that once methylation starts the body starts using a higher amount of all sorts of cofactors and that methylation can come to halt when there's a defiency of a cofactor. So it's tempting to take all sorts of supplements, but perhaps some of those supplements are not needed because my diet is sufficient.
Apart from the possibility of doing things that are unnecessary, there's the issue of getting too little or too much. In case of experiencing certain symptoms of defiency I'll supplement the cofactor that I think is missing of course. But how much? It would be easy to overdo it, for me anyway, and to get an excess after a while.
Testing would help me.

Of course, one has to sail by the symptoms, one has to pay attention to the abnormalities in mind and body one experiences, but I think excesses and deficiencies might still sneak in, and a regular test would be nice to show that I'm coming near to the bottom or the max, right?
At least that's what I thought. That's the reason behind this thread. Besides, I'm scared to misread any signals in my body, a test result in black and white would give me some reassurance.

My daily intake may vary over time, and the methylation needs may vary over time. I have no idea how much of extra selenium or zinc I have to take, to name just two, besides my present daily intake by food. If I am low in selenium, could some extra nuts help me out, or do I have to take a supplement? How about zinc, magnesium and all the other possible cofactors which are important when methylation has started?

I hope I didn't offend you, you going through the trouble of helping and answering my question and then learning that the stupid woman actually wants to know something else. My fault.

It would have been better if I had rephrased my question: when talking about methylation, what are the essential cofactors to keep a close eye on? And which of them gets deficient easily, which of them is easy to overdo? So which of them should be guarded with the help of blood tests? And how often should I do this checkup?
Mind you, there's no annual preventive checkup in my country, doctors will normally only investigate people who have complaints, who are not well, and they'll only test the things that say something about the cause, the root of the problem.

Dear AFCFS, could you help once more?
Or Anybody else?
 

AFCFS

Senior Member
Messages
312
Location
NC
I think you may have entered the arena of uncertainty that I am guessing many have encountered. If anyone has pat answers to the questions, that would be much appreciated (think it has been asked in one form or another here and there, but this is also a good place for the query).

Just some anecdotal feedback: I had started off taking a boatload of supplements individually, particularly selenium, magnesium, ATP cofactors (Niacin and B2), and B2 separately as I had heard that it was "in more need," and a multivitamin as a base to cover what else I might be missing. It was kind of like a shotgun approach, hoping that I hit everything and hoping that I got the right proportion.

I had one doc tell me that there was no effective way to determine what the mix was doing - if of benefit or perhaps eventual harm. Then I saw another doc, who did the Methylmalonic Acid test. I had previously had the B12 serum test and it was low normal. I did not really question the Methylmalonic Acid test at the time, but the provider had just mentioned that the B12 tests were not very indicative of actual B12 levels. Am not sure how it will be measured in the future. I think much of it does have to do with individual response.The provider also did a MTHFR enzyme test. The MTHFR enzyme is responsible for creating the circulating form of folate.

The doc that had ordered the Methylmalonic Acid test also wanted to streamline my vitamin/supplement intake and had me go on Pure Encapsulations Nutrient 950 Without Iron, which has a pretty good mix, and drop the individual vitamins. The doc also put me on 5000 mg of B12 Sublingual (Jarrow) and once daily .2ml B12 injection. So, that is a pretty hefty intake of B12 and I have no idea how the "balance" of supplements is being used - whether commensurate with the B12 intake, too much, or lacking in some regard.

That regime has provided some very positive effects in about 10 days time. I think, ideally, could do away with the B12 injections and see if the positive attributes are maintained with the B12 sublingual. In line with that, also had a baseline done via a comprehensive metabolic panel which includes sodium, potassium, chloride, calcium, as well as liver enzymes (to name a few). In a very general statement, it is my understanding that if one thing gets out of whack it will likely effect another thing and it would show up somewhere to raise a red flag. It is also my understanding that if one is not ingesting supplements by the bottle then most of these changes will likely take a certain amount of time.

Just to continue this a bit, at one point when I was taking individual vitamins, I could tell (via symptom evaluation) that I was getting too much Vitamin A. I stopped it and symptoms went away. On the other hand, I never knew I was Vitamin D deficient until being tested or noticed a direct positive effect when I supplemented and came within a normal range, when being tested again. Currently I have some tachycardia - not sure if it is from a long term Klonopin withdrawal, or indicative of something else (maybe Synthroid), or maybe B12 intake, or perhaps something in Pure Encapsulations Nutrient 950 Without Iron. But at least, can present it to the doc without including the possibility of 10 other supplements that might be taken in some well-intentioned, but ill-thought out manner.

Its a good topic and hopefully will get more direct feedback, though anecdotal reports may also help shape a direction.
 

Victronix

Senior Member
Messages
418
Location
California
Just to continue this a bit, at one point when I was taking individual vitamins, I could tell (via symptom evaluation) that I was getting too much Vitamin A. I stopped it and symptoms went away. On the other hand, I never knew I was Vitamin D deficient until being tested or noticed a direct positive effect when I supplemented and came within a normal range, when being tested again. Currently I have some tachycardia - not sure if it is from a long term Klonopin withdrawal, or indicative of something else (maybe Synthroid), or maybe B12 intake, or perhaps something in Pure Encapsulations Nutrient 950 Without Iron. But at least, can present it to the doc without including the possibility of 10 other supplements that might be taken in some well-intentioned, but ill-thought out manner.

I take a multi daily (Rainbow Light, although Pure Encapsulations looks interesting also) and basically added vitamins that seemed to make a difference as time went on. I also take Synthroid. I discovered through micro-nutrient testing that I had several deficiencies, Vit A, Magnesium, Zinc, Oleic Acid, etc., and also my Serotonin was very low. It was very expensive, but I also was afraid to just try a lot of individual vitamins because I'm so extremely sensitive to everything. By doing the testing, though, I was able to address specific deficits, and then with the multi, hopefully other areas will be covered.

I've had a lot of heart palpitations over the years (had 2 years where my thyroid went toxic and have been recovering ever since), but over time they have gone away. Starting on 5000 of B-12 could cause racing heartbeats. For me, it takes about 2 weeks to fully adjust once I increase a dosage or change a brand. The first few days are often sickly feeling, but when I first started, my body went crazy, in part because I was so deficient.

Most recently I'm trying to figure out and deal with the many gut issues I have. I've started on a gluten free diet and take probiotics 3x a day now. If I miss just one day or even one dose of probiotics, my gut starts to go crazy. Long story . . .

Anyway, good luck with it and keep us posted.