So I've had some testing.. My urine MMA is elevated but my homocysteine is low.
Before these tests..I was taking methylcobalamin/hydroxy/adenosyl 5mg lozenges off and on. Not regularly but maybe a couple times a week. I have methylcobalamin(300 mcg) and methylfolate(400 mcg) in my multi.
Here is some back story.. So I was feeling really rough the beginng of October. Cold, exhausted, my hair is falling out, loss of appetite, I had yellow feet and I've had yellow skin for awhile, hard time breathing, not digesting..low stomach acid, blue fingernails. I figured my iron was low. I started taking 25mg iron bisglycinate once a day. Early November I had more energy. Still wasn't digesting well but enough to get through my day. I got some color back but still yellow skin, blue nails, I developed ringing in my ears and stabbing pains in my palms and bottom of my feet. My palms turn red often when I feel the stabbing pains. So I figured maybe I had too much iron..this is when I started getting all these tests.
Also I am MTHFR compound heterozygous.
Something else you should know. Loss of appetite had been sneaking up on me for some time and I hadn't realized how little I was actually eating. I was working 6-7 days a week as I'm the only paycheck to care for my family. So this first round of tests I can share were done with me eating very little and I was struggling to regulate my electrolytes.
I will post more test results to give you all an idea of what has been going on with my body..maybe you have some ideas.
Edit: forgot I have very blurry vision and developed large darker floaters and my anxiety has increased. Can't sleep as long. I wake up too early and cant sleep even though I'm so tired.
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Kimme1029
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Your MMA is nearly normal and your hCys is normal because you have plenty of B12 getting into your cells. You do not have a B12 deficiency.
Your serum B12 is very high. That is the opposite of a deficiency. It's very high because you have been taking super-high doses of B12. You obviously have no absorption problem.
Your iron is high, so those supplements are working.
"Compound heterozygous' is a meaningless phrase invented by MTHFR mythmakers to try and scare more people into taking their snake-oil, visiting their clickbait websites and buying their fantasy books. Over a billion people are 'compound heterozygous' and manage perfectly well. If you did have any problem with MTHFR function then the methylfolate you are talking would fix that.
Rather that trying to diagnose yourself, I suggest you see a real doctor. They will almost certainly tell you that your problem has nothing at all to do with B12, folate, iron or MTHFR.
I have been to 3 different Drs. One is a hematologist. I have many tests done. I have seen real Drs.
So far no one has found why my skin is yellow. My fingernails are blue. I just did a hair minerals test and it says my B12 is low. My iron was low also.. Which is why I took iron pills. That worked. My iron is up.
So what you are seeing is slightly low B12. Thats fine. It seems I take the B12 and it stays in my blood. I need more to get into the cells. It isn't enough. I am getting a Spectrocell test done next week. My Dr says this will show if I have any other vitamins that are low.
No. Your B12 is 2000 that is not 'slightly low' that is so high it went off the top of the scale.
There is absolutely no way on Earth that a 'hair minerals' test can tell you anything at all about your B12 levels. ncbi.nlm.nih.gov/pubmed/402..."commercial use of hair analysis in this manner is unscientific, economically wasteful, and probably illegal"
You have plenty of B12 getting into the cells because hCys isn't high.
I have no idea what a 'spectrocell' test is supposed to be.
Fbirder- I have stated that I do take 5mg lozenges off and on. I also have methylcobalamin in my multi. My Dr said that serum B12 isn't an accurate test when you take supplements. My urine MMA test shows my B12 is low. Maybe not majority low.. But it is low. I am very symptomatic. My hair is falling out, I get tingly/prickly hands and feet, my vision is much worse, I turned yellow with blue finger and toe nails, my digestion is terrible- low stomach acid. None of my tests have indicated I have any liver issues so far. Seems to be a B12 and maybe several more nutrients low. Much of my testing shows malnutrition. I've been working like a dog and barely eating. Somewhere along the way I lost my appetite. I don't feel hungry very often anymore.
This is the hair test I took. This explains a lot about B12. My B12 was below the range as was my lithium and most of the essential metals. My copper and zinc showed below range indicating that it agrees with my blood testing. My MMA is in agreement with my hair test as well. My iron showed low which is why I took the iron pills for a month. My hair test seemed to match my blood/urine results so I have no reason to disbelieve it.
Have you seen this? I wondered if my lack of eating influenced my homocysteine to be on the low side. I am not sure. Just wondered. I don't know how strongly a low B12 level would interact with eating maybe around 1 meal a day. Barely any meat.
This is the Spectracell test. My Dr said they check what is really at your cellular level by checking your white blood cells. She is going to draw blood for that test on January 10.
“My Dr said that serum B12 isn't an accurate test when you take supplements.” Of course it is accurate! It shows that you are absorbing the B12 in your pills. It shows that you do not have an absorption problem. It shows that you do not have a B12 deficiency now and, if you ever did have a deficiency it was because of a lack of B12 in your diet. Saying that the test is not accurate if you take supplements is as stupid as saying that the test is not accurate if you eat food containing B12.
Your MMA test shows you have very slightly elevated MMA. There are many possible causes of that. Low B12 is one possibility. But you do not have low B12, it is very, very high. That B12 is getting into the cells because your hCys is low.
You are very symptomatic - of something. But those symptoms could be caused by many possible problems. All the evidence points to it not being B12.
No. Lack of eating cannot make your hCys low.
Yes. I have read just about very bit of nonsense about MTHFR on the interwebs. It is just about all rubbish, balderdash, tosh. This is no different. There’s an easy way to tell - it contains zero links to peer-reviewed science and it wants you to spend money on a special course. It is a scam.
The test by Spectracell will not be looking at your white blood cells. It will not be looking at the cellular level. It is a simple, though comprehensive, blood test. Are you sure your doctor is a real doctor and not some sort of -opath?
My Dr is MD/naturopath. She is both. She is MD that prefers to check nutrient levels before anything else.
What she said about SOME serum nutrient tests is that they are heavily influenced by what you've just eaten or supplements you've taken. I've seen warnings about folate tests that say if you've eaten a high folate meal a few hours before the test it will influence the result. What floats in your blood isn't always what is in your cells. Magnesium is another example. Magnesium has to be tightly regulated to run your body. You can have a striking deficiency but still have a normal serum magnesium. Serum B12 won't always tell you what is in your cells if you are taking supplements.
"Hypohomocysteinemia—defined as less than 6.0 mmol/L—is not common, occurring in only 0.5% to 1.0% of the population.4
Low homocysteine may also be indicative of excessive conversion to cystathione for use in the transsulfuration pathways (see Figure 2) for production of glutathione, taurine, and sulfate. Low homocysteine would suggest impaired ability for de novo production of glutathione and thus increased susceptibility to oxidative stress."
My homocysteine is 4.8
That's fine if you don't recognize MTHFR. I don't spend anymore money on methylated vitamins vs regular. My multi is the same cost.
Have a read here. This will tell you that in fact.. This is not a regular serum test.
"SpectraCell’s flagship diagnostic test is the Micronutrient Test (MNT) which measures 31 specific micronutrients – vitamins, minerals, amino acids, antioxidants and metabolites – and how they affect cellular function in a person. If someone is deficient in a particular nutrient, the MNT will uncover this deficiency so that it can be effectively treated, thus facilitating real prevention.
"The MNT is performed intracellularly – it is not a static serum measurement – thus taking into account cellular absorption, metabolism and utilization in its nutritional evaluation of cell function, which correlates with tissue health and systemic health. Serum (extracellular) nutrients fluctuate wildly, are only a snapshot and tell you nothing about the functional health of cells. The MNT measures nutrient status, in the context of cellular function, over a period of 4-6 months. No other nutritional test compares. "
So..This test will show me what exactly is the cellular level of my B12.
I can respect your choice to disagree on Drs. The point is that no regular MD has any idea what is causing my problems. Something is obviously not right. It seems to start at the bottom with a nutrient check is the most basic first step. Correct the deficiencies and see if that helps. If not- look further. Pretty simple really.
The precursor of homocysteine is methionine, an essential amino acid. So it makes sense that your homocysteine could be low because you don't eat much protein. MMA is formed when four amino acids are metabolised, but because urin MMA is divided by creatinine, it's less sensitive to the amount of protein you eat, and a better indicator of b12 deficiency.
When you start taking b12 the body may need all kinds of nutrients, so you should probably try to eat better in general while taking supplements.
Thank you. That's exactly what I thought too. Unintentionally I was eating like a vegetarian.. Just busy, poor digestion, lack of good meals. I miss feeling hungry. I miss my health and I was confused with low homocystiene and elevated urine MMA. You are fantastic. I used to love steaks, burgers, wings, chicken..all of it. I ate huge salads.. Many vegetables.
Perhaps the folate you take keeps the homocysteine down. It might be an effect of folate masking a b12 deficiency, because the enzyme (methionine synthase) that lowers homocysteine uses folate as substrate. (The enzyme takes a methyl from 5-methyl tetrahydrofolate and puts it on homocysteine, thereby converting homocysteine to methionine.)
If your serum b12 is 2000 it is quite high, but that might be because of strong supplements. The high MMA seems to indicate that you should keep taking b12, or try injections if that's an option. Once you start supplementing with high strength b12 it's probably better to go by the MMA.
MCV (average size of red blood cells) is quite high within range, which is consistent with low levels of b12.
For how long have you been taking 5mg b12? You only absorb somewhere around 1 % of b12 tablets, so even though they seem strong, it might take a while to build up the body's b12.
Your copper is quite low within range. Deficiency can give symptoms similar to b12 deficiency. Perhaps you could try a supplement, or make sure you get more from food. Your zink is just under the ref range, so you should get more of both Zn and Cu.
Yes! This is what I was wondering.. I do take methylfolate separately from my multi sometimes. I'm big on pulse dosing. I only take my multi and magnesium daily and pulse dose my B12 and methyl folate. I will take anywhere from 250 mcg to 500 mcg 2 to sometimes 3 days a week. Try to spread it out and not take too much or too high of anything. My appetite is terrible. I struggle to eat and my digestion sucks. I cough after eating from my stomach fumes coming up. I take the folate hoping it helps interact with my B12 and help my low stomach acid.
So perhaps if folate is high .. Even with a low B12 the homocysteine can stay low? That is interesting.
I've had a number of tests done and after the hematologist drew 6 tubes of blood from me(I passed out.. That has never happened) I got a B12 shot(cyanocobalamin). 3 days after that I ended up in the hospital with my electrolytes crazy. My potassium I can't seem to keep above the bottom of the range.
I actually just got some copper pills to help bring up my copper levels. I have some zinc pills too. My Dr said that with poor digestion I won't get as much out of my food as I should. Probably for now the supplements will help get my body up and running. I take digestive enzymes, drink kefir, kombucha and if I need to I have betaine HCL pills. I tried apple cider vinegar but that seemee to give me a more miserable experience.
So low copper may also be giving me symptoms as well as B12 and I maybe can't tell them apart? Maybe that's making the B12 symptoms seem much worse than the actual B12 symptoms are.
To convert hCys to methionine the enzyme methionine synthase requires both methylfolate and B12. The methyl group is passed from methylfolate to hCys, via cob(I)alamin - which comes from B12. Without B12 the enzyme cannot work.
A serum level of 2000 is too high to be measured. There is no need for injections as the B12 is getting into the blood. The body cannot tell how it gets into the blood, injections or pills. The MMA is not very high. Indeed, according to this it is in the normal range - emedicine.medscape.com/arti...
I suppose low b12 means less of the enzyme, not that it's not there. This, I assume, means that the conversion slows down, but having more of the substrates (5-methyltetrahydrofolate and Hcys) might speed it up a bit. (Isn't that standard reaction kinetics?) Because how else could folate "mask" b12 deficiency? Or does it increase the product tetrahydrofolate directly, without any involvement of methionine synthase?
Yellow palms and feet is probably carotenemia (carotenoids unable to be converted to retinol, so stay in skin as yellow pigment) caused by hypothyroidism or diabetes, which is likely caused by stress hormones. Check thyroid and adrenal stress hormones-many of the symptoms suggestive of thyroid deficiency. Carotenemia and vital exhaustion common with vegans and those with poor diet as they tend to trash their adrenals.
Maybe this is some of the yellow. I don't know. It isn't just the palms and feet. My whole skin looks like I have a tan compared to everyone else. The problem is that I've not been in the sun in forever. I'm inside working. I don't have a tan. Compared to everyone else my nails are pale/blue. With the B12 I'm taking it seems the color is starting to come back slightly.
I've not had the Dr say anything about adrenal. I can ask her to check that next visit.
Wow that's a great find!! I wish I knew how to post all my test results. Anyway so you already saw my blood test zinc level.. Terrible. Below range.
My hair test says zinc is 110 range 140-220.
So blood and hair agree my zinc is tanked. I looked at my Alkaline Phosphatase and both tests say 48. So thats below the 70. And my sense of smell and taste is poor. Several of my nails have the white spots(and my lunulas have disappeared).
So yes definitely my zinc needs help. Badly. It seems the yellow isn't really jaundice then? Even with a slightly low level of B12 it's not low enough to cause yellow skin? My eyes have no yellow. Just the skin. My multi is full of beta carotene. How interesting. My multi also has 25mg of zinc and no copper. I guess 25 my isn't enough? Seems like an awful lot for a day. Maybe I'm not absorbing it well?
You are just fantastic. Thank you. I appreciate you.. And everyone else that took the time to read my posts.
This is the multi I take. Is this a lot more beta carotene than other multivitamins? Or is it just my lack of zinc to convert it? Low Vitamin A due to conversion issues. Wow. No wonder my vision is a disaster.
This forum isn't a substitute for professional medical advice.
Your MMA is only slightly elevated. In cases of B12 deficiency, or functional B12 deficiency, it is usually significantly raised.
There are a number of genetic variants - all rare - which can affect the way B12 is processed by your cells and mean that some specific processes don't run very efficiently. This is quite different from having a B12 absorption problem, such as PA and as such is off topic for this forum. You will need to follow up on this possibility with your doctor.
I am not aware of any mutations on the MTHFR gene that fall into the class of significantly affecting the way B12 is processed in cells.
Unfortunately there are a number of conditions that could explain symptoms you are describing.
A functional B12 deficiency can occur when b12 levels are raised - it isn't clear what causes it but it does appear as if raising serum B12 levels is triggering a reaction in some people that results in the process that allows B12 to pass from blood to cells less efficient.
My Dr looked at this situation and said my serum B12 test isn't accurate due to taking supplements. I would need to stop taking B12 for some time to get an accurate serum level. Instead she said the MMA is more accurate and the Spectrocell will show exactly what level of B12 is in my cells. She said keep taking the B12..because the excess will flush out and if my MMA is showing a low level of B12 it doesn't make sense to stop taking it to get a true serum B12 level. We also plan to retest MMA and see if it has gone up or down.
I've had TSH checked twice and both times it was well within range. My Dr does plan to do a full thyroid panel.
MCV is also on the higher end in range. So if I were to stop taking the B12 that seems it would get higher as well.
you need to go with what your doctor says - the reality though does appear to be that you don't have an absorption problem as the supplements have raised your B12 significantly - to a point where the serum B12 is actually off the scale.
It sounds like your doctor is talking about functional B12 deficiency rather than an actual B12 deficiency. Though they are correct that interpreting serum B12 in the presence of high dose supplementation is very difficult - which is slightly different from saying that the test is inaccurate.
Maybe that's what is the issue. Functional B12 deficiency. In any case I just have to wait on the next test and retest MMA. Nothing else I can do. Take my B12 as is and wait.
Have you seen an optometrist or other eye specialist regarding your eyesight problems? If not it would be a good idea to see one.
Could you start taking care of your health by taking the time to have regular nutritious meals instead of all these supplements? Maybe give it a few months to let your body normalize and then have everything checked again if you still have problems.
Not yet. I haven't been to the optometrist. That was the plan for early this year.
I've been doing better with meals. Not great but improved. You see.. What happened is after I had my daughter my husband and I decided it best I stay at work because I can make more money. He quit his job to stay home with my daughter. We don't like daycare. I used to cook.. All the time. Very healthy and nutritious. Now that my husband cooks and I work 6-7 days a week... This is where my health took a bad turn. So I'm trying to teach him to cook better meals but its hard with me working so much. I don't have much time to be in the kitchen with my daughter begging for my time. It's sad really. Hard right now. Even 6 months ago I was full of energy ..and now.. So tired.
I used to get nausea with eating a few months ago but it has improved. At least that has stopped. My Dr said to get my digestion going and use supplements for now until I can digest better. After I get my digestion working better and more stomach acid I can break down my food better.
We have been discussing these options. Maybe my mom can watch my daughter some. Trying like crazy to find solutions. Unfortunately my daughter just started occupational therapy. She needs help eating and has low muscle tone. ..so more money demands. It really is scary.
"Tan all over" is usually how Addison's disease is described. Is the skin at your elbows, knees, and finger joints darker than the rest of you?
Addison's usually causes high potassium though, and you mentioned yours was low.
Addison's = low cortisol, high potassium, low sodium. Symptoms = tanned skin all over, salt cravings, fatigue, weight loss, loss of appetite, GI problems, fainting, low blood pressure, hypoglycemia, dark spots on gums.
JFK had Addison's, which gave him a bronzed "healthy tan" look even though he was quite ill.
No I don't have any dark spots or patches on me. I don't have a dark tan yet.. It looks like a lighter tan. Not bronze yet.
Yes every test I've had my potassium is bottom number on the range or below. I can't seem to keep a good potassium level. My hair test showed it very low and magnesium also. Interestingly, my sodium has always been mid range on blood tests but my hair test showed it low. Not as low as potassium but low. I always crave salty things. I haven't had a cortisol test in years so I have no idea what it is now.
No dark spots on my gums. My blood pressure has always been kind of low side..my moms too. She got on thyroid meds and her blood pressure came up some. Not sure about hypoglycemia. My sugar is average around 85 on my tests.
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