Vitamin B12 deficiency is commonly misdiagnosed.

[morabshadow]

Hi freddd and all,

I am sorry but I forgot to mention that for a few years my serum cell folic acid is always very high normal or out of normal and my serum B12 is always high out of range. I realize the high B12 serum is normal when given shots, etc

My serunm and urine homosteine is non detectable for years since starting B12, too.

I think there is a methylation block and folate trap. I am just afraid that I may be doing more harm by taking so much B12.

I have lots of issues genetically
COMT V158M --
MTHFR(C677T) +-
MTRR(A66G) +-
CBS A360A +-
Pernicious anemia
Gluten intolerance

I also mhave mercury toxicity(long story)

This forum is woinderful and appreiciate all the deication and hard work . . .it is just so hard for me to find the info.

Thanks again . . .don't mean to be overwhelming . . actually tried to simplify my situation.

Best wishes,
Sue T

[morabshadow]

Hi Freddd and all,

My first post for some reason was not posted so this is actually 1or 2 posts.

I'll try and make it short.

I am 53 with B12 and folic acid issues, PA and now found out celiac, lyme CFS etc. Been sick most my life with most symptoms like other, seen 60+ docs, spent $100,000+ over the past 15 years trying to figure this out.

I am afraid I may be taking too much B12, but test results don't indicate it. Could I be missing something?

I have been doing almost daily shots for 2.5 years/sublinguals, but mostly hydroxy. Daily Adeno sublinguals and had problems with Methy stirring mercury so used mostly hydroxy.

I have very elevated MCV and MMA and folic acid still.

Is there any way to know if I am taking too much B12? I know the MMA is not a good indicator once shots have started.

My hemocrit, hemoglobin, and MCV are high..

I have been supplementing with lot of what Freddd has suggested.

Sorry not sure where my origional post went.

Thank you, Sue T

[kevinmillhill]

Dear morabshadow,

The moderators have to read your first few posts, so they sometimes take a while to appear - particularly if they are long. I'll work through the points that I can deal with from both posts, but could I also refer you to my lengthy "New Readers Begin Here" thing, last posted to melaniekern at #4264 and #4265? It gives you quite a lot of background to the whole - extremely complicated - subject of B12 Deficiency.

"I am 53 with B12 and folic acid issues, PA and now found out celiac, lyme CFS etc." A number of people - myself included - consider CFS just to be a specific group of B12 Deficiency signs/symptoms. This time last year (amongst a host of other problems) I could hardly raise myself from the bed; this week, I am working 48hrs of night shifts, on the road, in the Ambulance Service. All I have treated myself for is B12 Deficiency.

"Pernicious Anaemia" is an outdated term for "Intrinsic Factor Insufficency"; there is no cure, and the answer to it is to treat the B12 Deficiency it causes. Coeliac Disease certainly predisposes you to B12 Deficiency; as I'm sure you know, the current answer to coeliac problems is a gluten-free diet; the answer to the B12 Deficiency it causes is to treat it.

I am interested in knowing who diagnosed your Lyme's Disease, how it was done, and what treatment you are receiving.

"I have been doing almost daily shots for 2.5 years/sublinguals, but mostly hydroxy. Daily Adeno sublinguals and had problems with Methy stirring mercury so used mostly hydroxy." "I also mhave mercury toxicity(long story)"

Have you actually been diagnosed to be suffering from mercury poisoning? If so, how were the tests done? Or are you just concerned that keeping methylcobalamin sublinguals in your mouth for long periods of time may leach significant quantities out of the amalgam in your fillings?

"I think there is a methylation block " Again, is this just supposition, or do you positively know that you are a "poor methylator"? If the second is the case, there's not a lot of point in taking hydroxocobalamin, because your body cannot use it without conversion. On the other hand, the Serum B12 Test will show up positive in response to a good few of the 38 known cobalamins. It could be that your high B12 serum levels are reflections of large amounts of h-B12 in your bloodstream, and, hence, in your cells (doing nothing).

"I am just afraid that I may be doing more harm by taking so much B12." "I am afraid I may be taking too much B12, but test results don't indicate it. Could I be missing something?" "Is there any way to know if I am taking too much B12? " All of the literature I have read on the subject says that (provided you steer clear of cyanocobalamin) B12 - in any quantity - is non-toxic. That assertion is also borne out by the considerable experience available on this thread - my own included.

"my serum cell folic acid is always very high normal or out of normal" I appreciate that you are probably supplementing with folic acid, but what your metabolism actually uses is l-methylfolate which most of us can synthesise (with variable degrees of efficiency) from folic acid. The usual test is therefore for l-methylfolate. Are you saying that your red cell l-methylfolate levels (usually just referred to as "folate" levels) are ok, or are you saying that your serum contains a lot of unconverted folic acid?

It is unclear from your postings why you have been diagnosed as B12 Deficient. Starting from the symptoms list at #2679, could you, perhaps, give us a little more of the early history, as well as telling us about your current signs/symptoms - other than test results?

[kevinmillhill]

I got all my labs back today. B12 only went up from 320 to 400. My Mal Acid levels in urine were in good range (does this mean anything since i had already been supplementing with sublinguals when taken)?

I got my first methyl shot today and I felt good after it!

Dear savmay,

Yes; it means that the supplements apppear to be working.

"The conversion of methylmalonyl coenzyme A to succinyl coenzyme A requires vitamin B12; therefore, a deficiency of vitamin B12 causes increases in the concentration of MMA (21). In fact, MMA concentrations often increase in early stages of vitamin B12 deficiency before measurable decreases in serum vitamin B12."

[kevinmillhill]

Kevin, I was reading through some of your prior posts -- you take alot of B12! I was analyzing myself and thinking about how I've felt most of my adult life and I think, unfortunately, in my case, I have been deficient for quite some time and B12 deficiency has a threshold period so to speak for one to get better. I remember being in my early 20's and having symptoms. Now that I'm older (45) the symptoms have gotten worse. I have a ferritin score of 15, my mcv was 104.8. I notice declined mental capacity about 2-3 years ago, frankly I just chalked it up to getting older. Now I'm wondering how aggressive I should be and if the 1x for 7 days, 1x a week for 4 weeks and 1x a month will be enough for me. What I got from your post was each one of us has to decide what the right dosage is by how we feel, so I will be experimenting with that.

I am taking your advice to heart and if I get my B12 methylcobalamin shots today, I won't waste more precious time and I will get a shot today.

I'm going to the dr. on Tuesday but if I'm already taking the shots what other way does she have of seeing a B12 deficiency? Parietal cell, intrinsic factor... because MMA is out of the question if I take the shots. I'd still like to know whether or not I have pernicious anemia.

Dear PattyGore,

I think that I am probably taking more than anyone else currently on this thread; I built myself up to that sort of level very quickly because I was in despair, suicidal over what had happened to me, and felt that I had nothing to lose. A combination of m-B12, ad-B12, and other supplements I've tried seems to be repairing the damage pretty quickly. It works for me, and I see no reason to stop. As you say, though, it's up to each individual to experiment, and to find out what works for her/him.

"I have been deficient for quite some time and B12 deficiency has a threshold period so to speak for one to get better." I think that Freddd might disagree with you there. He was ill for 30yrs, and only started his remarkable recovery once methylcobalamin appeared on the market, and once he found a doctor open-minded enough to discuss large doses.

You'll often read that some aspects of B12 Deficiency damage are "irreversible". So far, I have found none, and continue to make progress - admittedly more slowly as the number of things to fix steadily decreases. My own view is that "irreversible" means "nobody has tried hard enough, and for long enough". Freddd and I intend to be two of those who do.

"I'm going to the dr. on Tuesday but if I'm already taking the shots what other way does she have of seeing a B12 deficiency? " Once you start the cure, you have to ask the question the other way around: "How does she see that the cure is working?" and the answer is "By remission of the signs/symptoms"

"Parietal cell, intrinsic factor... because MMA is out of the question if I take the shots. I'd still like to know whether or not I have pernicious anemia." The IF antibody test is unlikely to be affected by B12 supplementation; however, it can also be inconclusive. Most of us have IF antibodies to a greater or lesser extent, and one person's PA may be another's normal metabolism. At present - since you can do nothing about the condition other than to treat the resulting B12 Deficiency - the only pressing reason I can think of for wanting a definite "PA yea/nay" is that it's familial. Some other underlying causes for B12 Deficiency are actually heriditary. If that is the area of your concern, it would be as well to persuade other family members to consider screening.

I'm wondering how bad your symptoms where when you discovered you had PA and how old you were? Also, how long do you think you had the PA going on? Just curious... it helps me because you seem to be doing something different (in your treatment) and I'm just wondering what made you go that route. I apologize if I'm asking too many questions...

Ask what you like. However, I don't have PA. I got the way I was through vegetarian principles, and lack of knowledge. Strangely, it is vegetarians who fall into the B12 bear-pit (after about 20 years) and NOT vegans. Vegans are very well educated on the subject of B12 Deficiency!

My 26yo daughter (the one who - along with my paramedic partner - actually diagnosed what was wrong with me when the medical profession couldn't) started to exhibit signs/symptoms earlier this year. She is a lifelong vegetarian. Knowing - from her Dad's crash - what it was, she promptly phoned me. She now takes 1 x 5mg Jarrow's m-B12 sublingual daily, and intends to continue doing so for the rest of her life.

"Just curious... it helps me because you seem to be doing something different (in your treatment)" You'll have to be a bit more specific; I don't know what you mean.

[morabshadow]

Hi Kevin and All, Part 1

Thanks for your reply and sorry you have been through so much but glad you are improving!

Kevin wrote:
"I am interested in knowing who diagnosed your Lyme's Disease, how it was done, and what treatment you are receiving"

I was diagnosed through 3 Lyme docs from an Igenex test. Been bit by ticks several times. I aslo have/had Babesia and Ehrlichia. I begged Kaiser to pay for Babesia treatment for 3 years and they finally gave me three weeks treatment of Zithromax and Mepron. I am supposedly first patient in California for them to treat because of my persistence etc. I have been studying Lyme for 5 years and following many forums etc and I found only about 10% get better from long tern abx etc . . so I don't persue that avenue. I feel keep the body methylating and healthy will help try and heal itself.

Kevin: Have you actually been diagnosed to be suffering from mercury poisoning?

Yes. Since I had my first amalgams at age 4. I have had a total of about 60 amalgams put in my mouth over my life time(in and out )poisoned everytime. No more amalgam now except for a few left over amalgam tatoos which leach HG. There is also HG in my brain, organ etc. Hard to get rid of it all. I have lots of testing including a DMPS challenge years ago which made me so much worse moving HG to my brain. I do lots of urine toxic elements tests though Doctor's Data every few months. I have see 60+ doc conventional and alternative.

Kevin: Are you just concerned that keeping methylcobalamin sublinguals in your mouth for long periods of time may leach significant quantities out of the amalgam in your fillings?

Its not a matter of keeping the sublingual in my mouth . . . its a matter of having Methyl B12 in your blood that can stir up the HG.
I am following Dr. Amy Yasko(autism doc) and have dealt with other chelation docs and they believe I have major HG issues. That’s why I have the folate trap and don't utilize B-12 properly. I also have genetic issue, too with a block at Methionine synthase. My father needed B12 in his twenties(we are Norwegian) but then stop seeing docs and then died of colon cancer. I can tolerate Methyl B12 better now cause I think I have chelated lots over the past 4 years since having amalgams out.

Kevin : It could be that your high B12 serum levels are reflections of large amounts of h-B12 in your bloodstream, and, hence, in your cells (doing nothing).

I think this is true and that Methyl B12 and Adeno will only work for me. The genetics I posted shows I am an undermethylator, too COMT--, etc.!

I appreciate that you are probably supplementing with folic acid, but what your metabolism actually uses is l-methylfolate which most of us can synthesise (with variable degrees of efficiency) from folic acid. The usual test is therefore for l-methylfolate. Are you saying that your red cell l-methylfolate levels (usually just referred to as "folate" levels) are ok, or are you saying that your serum contains a lot of unconverted folic acid?

I am saying that the Folate Cellular levels are very high, too(too high) . .plus plain serum folic acid is high out of range. I take both kinds of Folate about 800mg per day total . .I understand how differnent folates work and compete with each other so I and take both.

Here are some of my symptoms I have dealt with and most still have.
My son has shown some of these since a child but has not had testing yet. He is taking Methyl B12 sublingual for a couple of years after I requested he do so. His tongue looks much more healthier and sleep is better

[morabshadow]

Part 2.

My post was too long so here are my symptoms per Kevins request,
Thanks so much,

Sue T

My sympotms:

sore burning tongue
sore mouth, no infection or apparant reason
teeth sensitive to hot and cold
canker sores
burning bladder (no UTI)
painful urgency (no UTI)
burning muscle pain

sore muscles
lack of muscle recovery after exercise
extremely sore neck muscles reversing normal curvature of neck
exercise deblitates for up to a week, making things much worse
painfully tight muscles, especially legs
frequent muscle spasms anywhere in body
muscle pain especially around attachment points to bones
Eighteen severely tender muscle spots of FMS
Bursitis
dyspepsia - sick stomach, nausea, regurgitation,bloating,flatulence

abdominal pain
irritable bowel syndrome
Celiac disease (direction of causality if any not established) - gluten sensitivity
Dairy sensitivity
reduced libido - loss of sexual desire
post partum depression
PMS
paleness
rapid heart rate
heart arythymias
shortness of breath
heart palpitations
weak pulse
Widespread pain throughout body
Hypothyroid
High urinary MMA
dizziness vertigo
irritable
depression
SAD - Seasonal Affective Disorder
mental slowing
personality changes
chronic malaise
poor concentration
moodiness
tiredness
mood swings
memory loss
listlessness
impaired connection to others
mentally fuzzy, foggy, brainfog
megoblastic madness
dementia
delusions
anxiety or tension
nervousness
mania
Hypersensitivity to touch
Hypersensitivity to odors
Hypersensitivity to tastes
Hypersensitivity to clothing texture
Hypersensitivity to chemicals
Hypersensitivity to sounds and noises
Hypersensitivity to light and visual stimuli
Hypersensitivity to blood sugar changes
Hypersensitivity to internal metabolic changes
Hypersensitivity to temperature changes
mild to extremely severe fatigue
weakness
sleep disorders
non restorative sleep
lack of dreaming
Night terrors
normal touch can be unpleasant and painful
alterations and loss of taste
alterations and loss of smell
roughening and increased raspiness of voiceblurring -
can be sudden onset and sudden return
dimmed vision -
Visual impairment can be seen; intolerance to bright light
diminished hearing
ringing in ears
always feeling cold
intolerance to loud sounds
intolerance to multiple sounds
demyelinated areas on nerves
subacute combined degeneration
axonial degeneration of spinal cord
unsteadiness of gait
ataxic gait, particularly in dark
neuropathies, many types
progressive bilateral neuropathies
demyelination of nerves -
loss of detail and sensual aspects of touch all over body
paresthesias in both feet - paresthesias in both legs - burning, tingling, cobwebs, wet, hair, pain, numbness, etc
paresthesias in both hands - burning, tingling,
paresthesias in both arms - burning, tingling, trembling
neuropathic bladder
unable to release bladder, mild to severe
sudden electric like shocks/pains shooting down arms, body, legs shooting down from neck movement
most patients have signs of both spinal cord and peripheral nerve involvement
The effect on reflexes is quite variable
clumsiness
slowed nerve impulses
decreased reflexes
difficulty swallowing
brisk reflexeseye pain
decreased deep tendon reflex
toes turn up instead of down in reflex to sole stimulation
impaired white blood cell response
poor resistance to infections
easy bruising
pronounced anemia
macrocytic anemia
megablastic anemia
pernicious anemia
decreased blood clotting
MCV > 93-94 first warning, MCV > 97-100 alert
elevated MCH (Mean Corpuscular Hemoglobin)
big fat red cells (when said this way usually with happy or healthy modifying it completely misinterpreting results of MCV
platelet disfunction, low count
white cell changes, low count
headaches
inflamed epithelial tissues - mucous membranes, skin, GI, vaginal, lungs
dermatitis herpetiformis
frequent infected follicles
dandruff
eczema
dermatitis
skin on face, hands, feet, turns brown or yellow if anemia occurs
poor hair condition
thin nails
transverse ridges on nails, can happen as healing starts
Hair loss
Hyperhidrosis
Father needing b12 shots or supplement
seizures


AS INFANT OR CHILD

depression
frequent or continuous toncilitis
frequent strep
frequent longlasting supposed viral illnesses
headaches
growing pains
skin problems
allergies
continuous swolen glands in neck
low grade fever for years
Night terrors

Thanks for all your time and help,
Sue T

[MargaretR]

I have a neighbour who has peripheral neuropathy, and he told me that it is due to his past alcoholism.
He said that he had B12 shots years ago in the past, but now he 'no longer needs them' because he never touches a drop of alcohol.

I told him that he might be B12 deficient now, and lent him the book 'Could it be B12?'.
He returned it yesterday saying that he found it difficult to believe the book, because 'all neurological illnessess seem to be blamed on B12 deficiency'.
I have persuaded him to ask for B12 testing when he is due blood tests soon, but I know from my own experience that, unless the serum test shows an abysmally low level, he will be fobbed off, and will accept it.
Some people just won't take their own health as their own responsibility

Good news - my son who was vegetarian for 27 years, now eats meat. He has no signs of B12 deficiency but is still using the Jarrow lozenges I gave him.
If he takes them for 6 months and continues to eat meat, do you think it would be reasonably OK for him to stop using the lozenges?
(I know he will take them if I supply them free, but I need my spare cash to stockpile them in case Codex Alimentarus makes them hard to get)

I have now upped my Jarrow B12 lozenge intake to 2 a day - do I need to increase any of the others on the recommended shopping list to match it? (since they work with each other)

[PattyGore]

Kevin,

What I mean by something different is that you have done your own research... I've read earlier posts and you're your own doctor so to speak, which I think is terrific... no better doctor than yourself. I feel the same way, since I also intend to embark on treatment more aggressively than maybe others would. Yesterday I started taking my m-cob shots and I can already tell you, I see a huge difference. I'm taking 1 ml shots (I already took one today as well).

I went back and read some of your posts on your condition and it really gives one hope that this thing can actually get better. I have a mother who doesn't even know who I am... and I also have a brother who is exhibiting some signs of illness, so yes, I think it's important in my case to know whether or not I have PA. I got around the uMMA thing, you see, I spoke to Dr. Eric Norman yesterday at Norman Labs and he said I could just go ahead and send him the sample right away. So I sent it for Saturday delivery, and he let me know that he would advise me sometime today if, in fact, my MMA levels are elevated. I did this before I took my first m-cob shot.

The thing with this website is that it's so chock full of information, that your brain needs time (my vit. B12 deficient brain!!) to process it all and take it all in.... I'm working on it. I'm so glad I found this website and I'm already encouraging a friend of mine to take some tests (she has some of the symptoms)...

Thanks for getting back to me. I also want to read some of Freddd's posts to understand what he went through and what steps he's taking to correct his illness.

Regards,

Patty

[valeff]

Hi everyone!

I think I have found my home and have found people who can help me. I have been dealing with a host of symptoms that is disabling me. I gave my physician a long list of labs to run, and I think I have everything I need to get a correct dx. He bucked me on the labs, but I told him, that I was the one paying for them (not insurance), and NEEDED to find out what was going on. He agreed, but the problem is, my doc does not seem to be alarmed by any of my labs and will not refer me to another doc, thus they wont take me. I am alarmed by some of my labs ... but I am not sure I am reading them correctly. I do know my B-12 has dropped like a rocket in a years time - now on the low side. But doc says, it is still within range. I begged for vitamin B-12 injections, he refuses. I have been taking sublingual B (cycno) and switched to Methyl-B, and am not seeing any difference. All I know for certain, is my usual self is energetic, and it seems I am in severe pain, and am now getting sicker and sicker and have absolutely no energy at all. I am not trying to dramatic, but I feel if I don't do something soon, I am not going to make it - honestly, I am feeling that bad. Would someone here be willing to help me figure out my labs and where to go from here? I need to be educated so I can ensure that I will get the treatment I need, and have the information I need to get that treatment. I have a stack of labs about an inch thick, so likely if you want the results from any test, likely I have it.

I wish my doc would get it - I never go in and complain about pain, ever. I am not a complainer, nor do I like to spend money. After my c-section, I refused the pain meds, as I felt that the pain was not bad enough to take pain meds. I have a high tolerance for pain. SO if I am saying something is wrong, then it is not something to brush off. I honestly don't think that is where my problem lies ... I think I am dealing with low vitamin D, low vitamin b-12 and who know what other labs are completely out of whack.

Someone please take pity on me and grab me by the hand and help walk me through all of this. I feel lost and scared.

In addition I am over 5 yrs post gastric bypass RNY-prox.