High B-12 and folate blood levels, but symptoms similar to a deficiency

Can high B-12 levels cause symptoms similar to a deficiency?

I read that the B vitamins are water soluble and the excess is excreted. But my 15-year-old daughter has had high levels of B-12 and folate since she was 8-years-old. I began taking her to doctors because of extreme fatigue, migraine headaches, difficulties sleeping, and just not feeling good. Her first test at 8, the B-12 was 1097 (180-914 scale), folate was 18.4 (normal: 3.0 ng/ml). Her endocrinologist concluded that she was allergic to milk. Going off of milk did nothing to help the fatigue and migraines.

Over the years, her condition is worsening and she is becoming extremely anxious and depressed. Again, her levels were checked and they are slightly higher than before, but the doctors just ignore the whole issue. We finally went to see a Naturopath who recommended magnesium and that has stopped the migraines, but her mental condition is still very anxious and depressed. Have you ever encountered this before?

Comments for High B-12 and folate blood levels, but symptoms similar to a deficiency

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Probably MTHFR Genetic Mutation
by: Kerri Knox, RN- The Immune Queen!

Here's some information about this from a natural practitioner who effectively deals with this regularly. Here's something that may be of help for you.

This girl may have chronic fatigue syndrome, which does occur in young people. In chronic fatigue syndrome (CFS), it is common to see elevated B12 and folate in the blood serum, but this type of measurement is misleading in this disorder, because there is a functional deficiency of B12 in the cells, and folates drain from the cells to the blood in response, via the "methyl trap" mechanism due to MTHFR Gene Mutation.

Most of the B12 in the blood serum has been exported from the cells and is bound to haptocorrin, not transcobalamin, so it is accessible only to the liver cells, as
part of a salvage pathway for recycling B12 back to the gut for reabsorption, not to the cells of the body in general.

This occurs because of glutathione depletion, which removes the normal protection from B12 inside the cells. The glutathione depletion therefore leads to hijacking of B12 by toxins, and this in turn causes a functional deficiency of B12. That produces a partial block in the methionine synthase enzyme, which leads to the
folate draining and also sets up a vicious circle mechanism with glutathione depletion, which is what makes CFS a chronic condition.

Rich Van Konynenburg, Ph.D.
Independent CFS Researcher

Another Answer
by: Kerri Knox, RN- The Immune Queen!

Elevation of serum levels of B12 and folate are consistent with a methylation deficit. I you could measure tetrahydrobiopterin and methylcobalamin in cerebral spinal fluid you would see that they are low. This is classic in neurological involvement, we see it all the time in ALS, MS, Parkinson's, Autism, Post Stroke...

It is the most outstanding phenomenon in children with autism... observing their tests with traditional physicians over the past 30 years.

Patricia Kane, PhD
NeuroLipid Research Foundation
45 Reese Road
Millville, NJ 08332

My 8 year old has exactly the same ..
by: Anonymous

My 8 year old son also had high levels of folate in his blood and was allergic to milk. He had headaches, nausea and fatigue. He has suffered with this for many years of his young life until last month he was final diagnosed with Myalgic Encephalomyelitis.

Not sure if the Folate acid is connected but my folate acid was also high and I was also diagnosed with Myalgic Encephalomyelitis in the same month as my Son. There must be some connection. Incidentally the blood test results also showed that we appeared to both be fighting off some kind of infection yet it could not be identified... typical of Myalgic Encephalomyelitis.

by: AnonymousJean

Everyone needs to be tested for the MTHFR Gene Mutation. You will be surprised how this keeps people from absorbing Folic Acid, which is a synthetic b vitamin. Go to MTHFR.net and you will see how this is affecting 45% of peoples lives.

unmetabolized B12 and folates
by: Anonymous

Have read that can have symptoms and yet high levels of B12 and feel some better after taking B12 (am trying methyl B12 which is helping). That the foods that have added folic acid can lead to unmetabolized folate in serum, an can effect the thyroid. I dont eat any foods with grains, so dont eat the man made form of folic acid. Do eat food forms from vegies,(raw has most in them) liver...
Still experimenting with help with energy and digestion.

Check methylation cycle defects
by: Anthony Brea D.C.

Consider having genetics testing for methyl cycle defects, including the MTHFR Gene Mutation. Sometimes the issue isn't a deficiency but an inability to use the nutrient in normal amounts. Sometimes when the body can't utilize a nutrient it builds up in the blood.

High level of vit.B12 and folate
by: Anonymous

My son has autistic disorder syndrom and also elevated plasma b12 AND Folate, folowed by low lithium level. I suppose that he has functional B12 deficiency, but I am wondering how to corect this. Should I give him methil B12 injections?

MTHFR synptoms- get off enriched flour/ cereals!
by: Monta

Poor kiddos! my daughter and I had smilar proplem. please get your kids tested for MTHFR Gene Mutation and immediately get them off any multivitamins, anything with "enriched" flour(that's all white and unbleached white flour) and vitamin enriched cereals, bars, drinks, and so on.

Just this will make a HUGE difference. All of that unmethylated vitamin B and folic acid is building uo in the bloodstream and becoming toxic, causing these terrible symptoms, yet very little is being converted to the usable forms the body needs for sooo many functions, including making yor daghter's brain chemicals that combat depression. The active forms of the vitamins need to be taken-- methylcobolomine for B 12 and methyl folate instead of folic acid like is contained in Beyond B12 on this website, which is specially formulated for tthe MTHFR genetic variation.

You will need to find a Naturapath to help you. If there is not one in your area who knows how to treat this, mine can consult wuth them to bring them up to speed or can treat you long distance via skype consult and send you a testing kit in the mail that you can carry into your MD or local lab.

Heavy Metals and Toxic Load
by: Anonymous

My B12 is high too. I have not had the dr appointment for the hypothesis regarding the B12, but I do have heavy metal poisoning and have been chelating via IV.

Maybe you should have your daughter's heavy metals (or other toxins) checked. I would recommend the 6 hour urine challenge test. Since she has had the symptoms for so long, I would imagine the metals would have already gone from the blood into her tissues if this is the problem; hence, a blood test is not good enough.

You could always phone Doctor's Data and ask them for the doctors who do this test in your area.

New research shows that elevated B12...
by: Someone

...can also be an early indication of possible serious disease processes which should be evaluated as well.

See: Significance of elevated cobalamin (vitamin B12) levels in blood

It is also often associated with a genetic alteration of the MTHFR Gene Mutation.

Similar situation
by: Anonymous

We are experiencing a similar situation with out 17 year old son. He suffers with chronic migraines, left side neuropathy and most recently severe depression. His b12 levels will be high and then normal again, yet all of his symptoms mimic a b12 deficiency.

We have been searching for answers for years.

I wish you all well and pray for our children to receive a proper diagnosis.

God Bless!!

B12 level is 12,929
by: Anonymous

I was taking 2000 mg of Metformin for over 2 years. I felt terrible and requested a b12 test. Results were 12,929. I demanded a retest as I suspected lab error. A retest done a week later simply said over 2000! No actual number was given. I asked 3 doctors about these extremely high results.

None of them were at all concerned. I am very concerned.I had lost 50 lbs in 2 years and was just diagnosed with H-pylori but I have no symptoms,not even heartburn. What should I do next?

High B12
by: Anonymous

I have hemochromatosis which is high iron. High B12 and high folic acid are signs of hemochromatosis. Hemochromatosis can cause iron to build up in the body's organs. My father died due to the build up of iron in his heart. I am now showing signs of damage to my liver.

All my life I had been tested for low iron. Testing for high iron is not done routinely. The condition is hereditary. My brother is 55 yrs old and has discovered he had hemochromatosis, but it was after much damage has been done. When discovered early enough the condition can be managed.

by: Kerri Knox, The Immune Queen

I scoured the literature on hemachromatosis and could find nothing that states high folate and B12 levels are associated with hemachromatosis. In fact, many of the studies warned medical professionals to watch for deficiencies of folate and B12 in hemachromatosis.

Also, I could find no association with hemachromatosis and high homocysteine levels, which are often a proxy for high folate levels.

Can you please provide a source (medical research please) that shows this association?

Thank you.

by: Anonymous

My test for B12 resulted in 1023...way high. My folate is at 24.0 and the high range should be 5.5. This was after I stopped taking ALL multivitamins for 3 weeks!!!

I am MTHFR positive for the gene mutation. My iron tested low. I am trying to locate an appropriate doctor after several miscarriages. Very difficult to get the help needed. I started to take Genome methyl b vitamins once per week thought...from PureEncapsulations. Hopefully this will help until I find the right help.

Good luck everyone!

CFS/ME High Folate Levels in Blood
by: Anonymous

My 8 year old Son and myself have high folate levels in our blood but it has been ignored by Dr's. We both had migraine, severe fatigue, and other dreadful debilitating symptoms. Told we both had milk allergy and Chronic Fatigue Syndrome.

I can't help thinking there is a link between high folate levels and CFS that is being ignored.

high b12 AND high folic
by: lynne

Most google results show low b12 and high folic. I can't find anything about high b12 and high folic. The b12 is not at the max...it's not far though. folic is greater than 20 (off the charts of the test). I would appreciate knowing what to ask the doctor about. Or what doctor to see and for what. Thanks much!

High level of b12 and folate
by: Anonympus

If we have high levels of b12 and folate are we not supposed to supplement with those until levels come down?

blood tesr revealed B12 to be 1350
by: Anonymous

Although I have a high reading of 1350 for my B12, I have the symptoms of B12 deficiency. I am a 76 year old male.

High Folate and B12
by: Derrick Lonsdale MD

Some years ago I reported 2 boys who had repeated episodes of acute febrile lymphadenopathy. Both of them had disturbed thiamin metabolism and one boy was studied in detail. He had raised concentrations of folate and B 12 in the blood and had not received any vitamin supplements. He was treated with megadose thiamin and the concentrations of folate and B 12 fell into the normal range. Thiamin was discontinued and three weeks later he had another episode of febrile lymphadenopathy. Folate and B 12 were again very high and thiamin therapy was restarted. B12 and folate once more fell into the normal range. The explanation is unknown.

Lonsdale D. Recurrent febrile lymphadenopathy treated with large doses of vitamins B1: report of two cases.Dev Pharmacol Ther 1980; 2 (4): 254-64.

Genetic Haemochromatosis
by: Anonymous

I suffer from a genetic condition called genetic haemochromatosis or GH. This means we have a genetic mutation whereby a genetic change has taken place in the digestive system which means we overload with iron from our diet. High blood iron (serum ferritin) levels are higher than normal and the iron saturation level is high. B12 can be low and need supplementation as can vitamin D. But this isn't set in stone. Fibromyalgia and coeliac disease, arthritis, liver disease,heart attack,stroke etc can result from the iron deposits in the organs and bones.

You can seem quite tanned and well but feel very ill and fatigued. Just ask your doctor for a full blood test and iron panel if you are concerned. 1 in 10 people carry the gene. Two genes mean you are likely to overload.

by: brittha

I have MTHFR AND WAS PRESCRIBED PURE ENCAPULATIONS HOMOYSTEINE FACTORS (L-5-Mthf ). Felt better but had no idea if it was working. Travelling since 2015 had a b12 test which was high dr said he was not concerned because I am taking supplement .

Currently living in thailand and had another b12 test . It is very very high 1.550 pg/ml . The range here is F 197.0-771.0

So I guess homocysteine factor is not working .

Any help grateful .

taking b12, levels will be high
by: Kerri Knox

If you're taking B12, your levels will be high.

Dr says there's no such thing as your b12 being too high?
by: Aly

Blood tests show Folate >20.0 ng/mL and VIT B12 is 1378 pg/mL. I am searching for answers to my continued fatigue, upset stomache, dizziness and vision changes. My Dr said there's no problem with these results. Everywhere I read says differently. Can anyone explain why? Thank you.

Fatigue and High B12/Folate
by: Anonymous

She probably has the MTHFR Gene Mutation, this affects the way she detoxes B12 and Folate back out of her body, stay away from some forms of both and watch about supplementation of those vitamins.

The form of B12 she should avoid is cobalamin. Methylfolate (or 5-MTHF)and methylcobalamin (B12) are the only two forms she should take if she has that Variant, and it is more common than once thought. Those two forms have already been converted into the form she can use, folks with the MTHFR variant do not have the enzymes to process the other form properly causing a toxic level which will damage her nervous system. Her symptoms sound like that is the issue, the high levels will also damage peripheral nerves much like the lack of those vitamins will do, causing her to permanently lose sensation in her toes and then on up depending on how long she is exposed.

She can also develop ADHD, anger outbursts, extreme fatigue and more. Easy to have her Genes tested, if the doctor doesn't know of this Gene Variant, then go to a different doctor, as the longer she has high level the more permanent damage to her nerves will occur. There are other B vitamins that need to be in a different form also. You can even find B vitamins on the market that have only MTHFR safe forms in them!

It is easy to have her Genes tested to see if she has the variant, but it does appear she does, and BTW that is an inherited Variant, you or her dad could have a partial or full expression of the MTHFR gene which means you or dad could also have trouble processing B vitamins. This can lead to heart disease with high histamine levels and more.

What can cause a HIGH Level of B12 AND a HIGH Level of Folate?
by: Anonymous

My blood test cam back with a Folate Level of 28.1 ng/mL on a range of 3.1-17.5 and my B12 was 1,408.0 pg/mL on a range of 193.0-986.0.

Both of these levels appear to be well above the ranges. I have not spoken to the doctor about this yet but will be in two weeks. At this time I am concerned s to the causes that could align both of these to be high at the same time.

Homocysteine level
by: Anonymous

Ask the doctor to check your daughter's homocysteine level. Elevated level is caused when cells are not methylating correctly. This would most likely be caused because her body is absorbing folate BUT NOT CONVERTING IT INTO THE ACTIVE FORM HER CELLS MUST HAVE. If her level is high, ask for a prescription for CerefolinNAC or another medical food that delivers the ACTIVE FORM of b12 and folate.Then ask to have her homocysteine level checked every 3 to 6 months.

High B12 caused by B1 deficiency
by: Esther

The same thing happened to my daughter, she has had high B12 without supplementation. We just learned that it can be caused by a B1 deficiency. The B1 deficiency can cause fatigue, neuropathy, nerve damage, foggy brain and a lot of other symptoms. When large amounts of B1 are administered the B12 levels come back down to normal. I hope that helps!

by: Anonymous

Does your daughter have hereditary hemochromatosis he has your Dr tested for it

Mtfhr and absorption of folate and b12
by: Anonymous

I don't know is there any desease that can produce elevated b12 and folate in the blood, rule that out first, and then if is possible check MTHFR Gene Mutation.

If I understood well,you could have high level in blood but still suffer from deficiency on cell level.

So,blood test for b12 and folate does not say much.

For folic acid you should check Homocistein blood level, and keep that much lower than upper limit.
Suplement should be only Methylfolate, not folic acid.

For B12 check Methylmalonic acid blood level,and if you use suplement use Methylcobolamide. Adenosylcobalamin is another activ form of b12,but I dont know much about it. Do not use cobalamin or cyanocobalamin.
Hydroxocobalamin is usualy used in shoot of b12 and is not bad.

Your gene MTFHR is responsible for % of absorption. I am heterozigot and my absorption is 75%, but homozigot can have it much lower.
I just started to do my research looking for answers for migraine, Menieres disease,Tumarkin crisis... and all hidden causes.
Excuse my english please, it is not my first language.

Best Regards,

Please read the thread
by: Kerri Knox, The Immune System Queen

Please read the thread. It's been covered already that high B12 in absence of supplementation is due to the MTHFR Gene Mutation

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