Vitamin B12 deficiency
 

I know from the old forums that we have some experts here but I never thought I'd be asking the questions.

I have arachnoiditis and with this comes lots of complications including neuropathy which was always associated with the arach. I'm 48. Well they did my B12 level and it's 110. So I'm getting weekly injections, will have a Schillings test in two weeks and will take it from there regarding bone marrow biopsy.

My diet is very poor as I'm constantly nauseated. I rarely eat meat but do well with cheese, fruits, vegetables and milk.Not too good with junk food.

I take omega 3 and magnesium 750mgm rx'd. I take lots of pain meds., but actually went off everything this summer for 2 weeks to see if I could get my appetite back and rid of the nausea, all I got was pain.
I've read about the deficiency and I'm really thinking I've had it for awhile as it would certainly explain alot of the neuro. symptoms. My question I suppose no one can answer but I wondering if it is too late to reverse things.

I'm on injection #3 and haven't noticed any improvement. What I have noticed is that the injection makes me even more nauseated and was wondering if this is common. Going to call the doctor tomorrow.

Anyhow, thanks all for listening, kindly, Alye

rose...
 

will be here soon. She has posted a website she is building with all of her
B12 data. Her levels were really low at one time too...and she can help you
understand the healing.

But I can bet she will say...you need more than those shots.
Daily oral would be a good idea for you and give you more results.

Here link is in useful websites here.

Three shots are much too early to be seeing a lot of progress. It can take months to years. I had just mild damage with a borderline low B12 level of 294( 150-1100). Well, it seemed a little more than mild, but others have suffered much worse. In any case, my bigger symptoms resolved within three months, but smaller things still improved well past the the year mark.

My doctor ordered the schilling test, but the lab called and cancelled because they said they could not obtain the materials needed to run the test :rolleyes:.

I have the link to Rose's website on the B12 deficiency page linked in The Gluten File. Just look down the right side bar to the bottom.

Cara

Thanks Cara, Mrs. D and Rose
 

I found Rose's site very informative even if it is still under construction. I know on the original MGH forum she had written alot on this. As I have trouble absorbing lots of info at a time I needed to reference it again.

My original injury was meningitis (chemical) and now have adhesive arachnoiditis, central pain syndrome, neuropathy and multiple chemical sensitivity.
http://www.satori-5.co.uk/word_artic..._with_mcs.html

In my case the chemicals passed the blood brain barrier. Doctors who treat this are few and far between but I do have one now who treats me at distance that's why I had these additional tests done. Thanks all will keep you updated, would be happy for any small amount of improvement whenever it might happen. Kindly, Alye

there are other
 

disease states that have low B12 in spinal cord fluid...

One is Fibro. Also Multiple Sclerosis, and Dementia.

I'm certainly no expert, but your levels seem very low to me.
Mine was 600 and I now believe this to be low.
My doctor gave me an injection of B12 in his office. That afternoon and the following morning, I had more energy than typical.
However, the following day and even the following week, I was tired again.
I began taking 1000 mcg of b12 tablets. At first it didn't do much. After a week, I started to feel better.
Perhaps it takes time to build up in the system or it dissapates, etc.
ARe you taking tablets between injections?
Can you take something for your stomach?
I take Axid daily.
It's over the counter now (I do have to ask my pharm. for it though).
I haven't had any side effects with this medication.

Alye, you've received good information
 

You might be surprised at the number of problems due to B12 deficiency. It is common for a time to pass before seeing any difference, and many learn months and years down the road (as things begin to change and then improve) that all the problems were B12 deficiency related.

Of course, that may not be the case with you, but it might be.

Best wishes,

rose

Read your post regarding B12 - my husband was misdiagnosed with a rare degenerative brain disease - I tried to tell him that it was a B12 deficiency as his level of 212 was noted as suspicious in his bloodwork but they never picked it up. 1-1/2 years later they now have changed their minds - it was the B12 deficiency that caused his dementia and brain damage. I did not wait though and have been giving him B12 injections myself for a year now, however, at the advice of the author of Could It Be B12? An Epidemic of Misdiagnosis (Sally Pacholok) -he is on another compounded form of B12 called methylcobalamin it goes directly to the neurons of the brain. Also, a loading dose of B12 is not once a week - my husband was getting daily injections and now he is receiving daily injections for 6 months of this new form of B12 after 1 year of therapy of the regular B12 cobalamin. You should get this book - on Amazon.com it is only $10 - Check it out!!
Linda

online videos - regarding B12 deficiency
 

Unfortunately
 

The page at the link says that "pernicious anemia" is a "cause" of B12 deficiency and a "symptom." Wrong. It is not a symptom. The "anemia" that is sometimes a sign of B12 deficiency is megaloblastic anemia, not pernicious anemia.

Unfortunately, this sloppy thinking and writing about the B12 issue is common.

rose

Methylcobalamin
 

We have been writing of this since at least 2000. The form of B12 is very important for a percentage of people.

rose

Hi everyone

I was recently diagnosed with Vitamin B12 deficiency and folic acid deficiency. My symptoms began with palpitations and extra heartbeats three years ago. Twenty months ago I began to get fatigue, vertigo and imbalance, and was diagnosed with BPPV. In between these times I had a blood test that showed my B12 level was 253 but nothing was done (normal considered to be as low as 160!). I was living in the UK then. After worse fatigue and all the symptoms Cara? describes on the Gluten File plus a few more, my level was 140 and my folic acid 4. My doctor (now in the Netherlands) refered me to a neuro who was (sorry about this) a patronising prat who also told me laughingly that he could assure me that palpitations were NOT a symptom of B12 deficiency! :confused: He did however send me for an MRI and told me I had an "inner ear problem" and not MS (I didn't think I had it in the first place). I had been virtually bedridden on several occasions and at times was hardly able to walk. I saw him on a "good" day. My GP started me on B12 injections and folic acid tablets. The injections were to be one every three weeks for the first three injections (which I was surprised about) and then possibly every three months. He would investigate why my levels were low when the result of the MRI came through in mid-December. I booked my injections every two weeks by accident but decided to leave it as it was. I've had two injections and although my numbness had improved I still have all the other symptoms the worst being fatigue, imbalance, stabbing pains and bigger sharp pains here and there especially on my shins, pain behind my eyes and in my ears, sciatica, cubital tunnel syndrome, bladder and bowel problems, two types of tinnitus in one ear, clicking and popping in the ears, and problems with sleep, and all the brain fog stuff (I'm 52). I use a cane when walking alone mainly for balance and odd joint pains. Sometimes I find it hard to believe all my symptoms can be caused by this deficiency but read forums like this to reassure myself. I can't very well demand extra injections off my GP who seems to think I'm just a bit low. However, he was concerned that I may have permanent nerve damage or MS, so I don't quite get it. I'll ask next time I speak to him why only three injections to start, (but I am nervous about asking). It's good to know what others have been prescribed for comparison. At least after reading other posts I don't feel such a hyperchondriac as at times I have doubted myself as I couldn't believe I could have so many symptoms, luckily I have a supportive hubby.

all the best to everyone
Maria xx

Maria,


http://www.yourhealthbase.com/vitamin_B12.html
"oral supplementation with vitamin B12 is safe, efficient and inexpensive. Most multi-vitamin pills contain 100-200 microgram of the cyanocobalamin form of B-12. This must be converted to methylcobalamin or adenosylcobalamin before it can be used by the body. The actual absorption of B12 is also a problem with supplements. Swallowing 500 micrograms of cyanocobalamin can result in absorption of as little as 1.8 microgram so most multivitamins do not provide an adequate daily intake. The best approach is to dissolve a sublingual tablet of methylcobalamin (1000 micrograms) under the tongue every day. That will be sufficient to maintain adequate body stores. However, if a deficiency is actually present then 2000 microgram/day for one month is recommended followed by 1000 microgram/day. Some physicians still maintain that monthly injections of vitamin B12 is required to maintain adequate levels in the elderly and in patients with a diagnosed deficiency. There is however, no scientific evidence supporting the notion that injections are more effective than sublingual supplementation."

Vitamin B-12 - Is oral supplementation effective?
CAMBRIDGE, UNITED KINGDOM. It is common medical dogma that patients suffering from pernicious anaemia are unable to absorb sufficient vitamin B-12 from their diet and therefore require intramuscular injections of the vitamin on a regular basis. Recent research is questioning this assumption. In a commentary in The Lancet Dr. M. Elia of the Dunn Clinical Nutrition Centre persuasively outlines the reasons why oral supplementation is at least as effective as intramuscular injections. Dr. Elia points out that vitamin B-12 is absorbed from the intestine via two different routes. One involves intrinsic factor and is estimated to lead to absorption of about 60 per cent of the amount of vitamin B-12 ingested in the diet. The other does not need intrinsic factor (which is absent in pernicious anaemia patients) and only leads to absorption of about 1 per cent of the ingested amount. The body needs about 1-2.5 micrograms/day so oral supplementation with 100-200 micrograms/day should be adequate. However, Dr. Elia suggests a daily intake of 1000 micrograms/day is needed to ensure successful long-term results in patients with pernicious anaemia. A recent study showed that oral supplementation with 2000 micrograms/day was three times as effective as intramuscular injections in increasing vitamin B-12 levels in pernicious anaemia patients. Dr. Elia also questions whether the current RDA (Recommended Dietary Allowance) of 1-2.5 micrograms/day is adequate for older people. He points out that mild vitamin B-12 deficiency, which can lead to abnormalities in cognitive function and increased risk of cardiovascular disease, affects 12-15 per cent of all elderly people in the United States where the average daily vitamin B-12 intake is about six micrograms - well above the RDA.
Elia, M. Oral or parenteral therapy for B12 deficiency. The Lancet, Vol. 352, November 28, 1998, pp. 1721-22 (commentary)

Oral vitamin B12 and pernicious anaemia
MINNEAPOLIS, MINNESOTA. Pernicious anaemia can be treated with intramuscular injections of cobalamin (vitamin B12). These injections can be painful and expensive, but are still widely used despite the fact that research done 30 years ago clearly established that oral doses of one mg/day of vitamin B12 are effective in treating pernicious anaemia and other cobalamin deficiency disorders. The problem, according to Dr. Frank Lederle, MD of the Minneapolis Veterans Affairs Medical Center, is that physicians are unaware that oral cobalamin works. Dr. Lederle performed a survey among Minneapolis internists in 1989 and again in 1996. In 1989 none of the 245 respondents used oral cobalamin in the treatment of pernicious anaemia. In 1991 a review of the use of oral cobalamin was published in the Journal of the American Medical Association. A subsequent survey in 1996 showed that 19 per cent of the 223 internists responding were now using oral cobalamin. However, even in 1996, 71 per cent of the internists still held the incorrect view that sufficient quantities of cobalamin cannot be absorbed from oral supplements (91 per cent of the internists held this view in 1989). Dr. Lederle concludes that the majority of Minneapolis interns are still unaware of the oral treatment option.
Lederle, Frank A. Oral cobalamin for pernicious anemia: back from the verge of extinction. Journal of the American Geriatrics Society, Vol. 46, September 1998, pp. 1125-27

Oral administration of vitamin B-12 is effective
BRUSSELS, BELGIUM. Older people are often found to have a vitamin B-12 deficiency even though they do not suffer from pernicious anaemia. The body's ability to absorb vitamin B-12 from food decreases markedly with age probably because of a lack of stomach acid. The conventional way of correcting a vitamin B-12 deficiency has been through intramuscular injection of the vitamin. Now researchers at the Universities of Brussels and Antwerp report that oral administration of free vitamin B- 12 is effective in normalizing low vitamin B-12 levels. Their experiment involved 94 patients without pernicious anaemia with a mean age of 84 years who through repeated tests had been found to have an average vitamin B-12 level (in serum) of 146.5 ng/L. The patients were treated for one month with 100 micrograms/day of vitamin B-12 taken as an oral solution of the vitamin in water (10 ml of a solution containing 1 mg vitamin B-12 in 100 ml water). After 10 days 69 per cent of the patients had normal vitamin B-12 levels (271.5 ng/L average) and after 30 days 88 per cent had achieved normal levels (371.2 ng/L average). The researchers conclude that older patients with a vitamin B-12 deficiency unrelated to pernicious anaemia can be successfully treated with orally administered vitamin B-12.
Verhaeverbeke, I., et al. Normalization of low vitamin B-12 serum levels in older people by oral treatment. Journal of the American Geriatrics Society, Vol. 45, No. 1, January 1997, p. 124 (letter to the editor)

I have shots every 2 weeks as I have been advised that my condition would not be helped taking it oraly.
After 26 months a lot of my symptoms are controlled, but I am still suffering short term paralysis / paraparesis in my legs and now in my arms and hands.

I am seeing a new Neurolgist in February just to get a second opnion, if he also says I am suffering from Subacute Combined Degeneration of the Spinal Cord, then I will just get on with rest of my life and live with the paralysis that may or may not become permanent according to my MD.

Dorvad~ it would not hurt you to do BOTH. You might consider trying daily oral methylcobalamin for a few months, and see if you notice any benefit. Also, do you take a multivitamin and B-complex? You might also need B1, B6, folic acid, etc., as deficiencies in those can also cause neurologic symptoms.

Do you know if your shots are methylcobalamin or cyanocobalamin? It makes a difference for some people.

The vast majority of people seem to do really well on oral B12. I have only read from two people in six years who said that oral didn't work for them, and that they did better on the shots. I've heard several say that the oral worked better than the shots because they noticed symptoms/fatigue between monthly shots, and did not notice that when they had a steady daily supply.

And of course, there could be other things going on as well. For example, gluten sensitivity can cause wide ranging neurological symptoms, and many other conditions as well.


Maria~

I can't believe we shared so many of the same symptoms. It just always surprises me when symptoms can be so similiar, and other times very diverse. I was so lucky to catch my B12 deficiency just as I believe I was crossing over into spinal cord damage, given my symptoms. I had a few bed ridden days because of balance problems, numbness along my spine, etc, and even now...six years later, I have balance problems in the dark, going down stairs, running,...so I know I am not 100%.

And, as you may remember from reading my symptom list... my level was 294 (low NORMAL)...after 3-5 years of symptoms. So many people do slip through the cracks of these tests when doctors are only interpreting results based on the black and white of it, and the lab ranges are set the way the are.

And, again, there is always the possiblity that something else is also factoring into your symptoms. Seems that people with B12 deficiency often have other autoimmune disease, or vice versa. I know I was holding Lyme Disease in the back of my mind if my symptoms persisted or returned. But, thankfully, my symptoms have not returned...with the exception of a few mild flares now and then when my body is stressed..but very mild flares.

It is hard for people to believe these severe symptoms can all be related to a vitamin deficiency, but they can. I think these two articles available online are especially good on the subject~

eMedicine link on vitamin B12 associated neurological diseases:

Subacute combined degeneration: clinical, electrophysiological, and magnetic resonance imaging findings JNNP

I think you should also consider supplementing daily with oral methylcobalamin (2000mcg), even in addition to the shots. The supportive data can be found on here and Roses website (also linked here)~ http://jccglutenfree.googlepages.com/b12deficiency


Cara

Update
 

I just came across this post In "My favourites". I thought I'd reply with an update. My MRI was normal and I was glad to get away from the prat of an neuro. After much of my own investigation I wondered if I could have coeliac even though no one in my large family had this. I explained my worsening bowel problems to my doctor and not only did he agree but wanted me tested for Lactose problems too. Both came up positive! I'm now gluten free but my B12 problems continue. After having three injections I finally improved. My vertigo improved, balance, and general energy. I was left with pain in my hands and arms, sciatica, hot flushes (but I am 52), twitching and cramps in the legs, tinnitus, great thirst, and sleep problems. But it was still great to be feeling better! Unfortunately they decided that as my B12 levels were now high to wait for more treatment for a few months. After three months all my problems came back and I've had them now for two months. My B12 level came out at 275 and the doctor gave me one injection to be followed up by an injection monthly for two more months then stop again. The first injection has done nothing. I'm being investigated for the thirst problems too, just in case I have diabetes insipidus as my glucose is fine. I've decided to confront the doctor full on and request more frequent B12 treatment. He is a doctor who listens so I hope he does this time. My husband says I play down my symptoms and joke about it too much. I do this because I have so many symptoms I don't want to come across as an hysteric. I've also made an appointment to see my gastro as he is also great just in case my GP doesn't agree with me. I would rather my B12 be maintained at a higher level as it seems more logical to me. I have read about coeliac people complaining of thirst problems so maybe this is related to that and nothing more. But I still want to make sure. I just want my life back even if it's "not as I know it".:winky:

I hope this helps someone else who hasn't figured out what their problems are. I'll report back with an update sooner this time.

Maria xxx

Maria--
 

--are you taking any oral supplemental B12?

The responses to your first post provide much evidence that this would be as effective as B12 shots, as long as you are megadosing--at least 1000mcg (1 mg) doses taken seperately from other meds and supplements. This would be a better way to keep a constant high level of B12 in your body tissue.

Many of us use sublingual tablets that allow passive absorption, and these are avialable from numerous stores and Internet sites. Many of us have a preference for the methylcobalamin form of B12 (as opposed to the more commonly produced commercial cyanocobalamin), as that from has to jump through fewer metabolic hoops to be used by the body (and the B12 molecule is easy to interfere with, so the fewer hoops the better).

Thanks
 

Thanks for that. I will certainly look into that if my GP doesn't agree with me and if I do it I will tell him. I think I'll have to get it from the internet as I'm sure it won't be available here in stores as I live in the Netherlands (I'm English). I think it is a good idea anyway to be honest. Today I was so exhausted and it's just like old times. I don't go out without a walking stick. People are very helpful telling me "but you look great"! I'm fortunate in looking much younger than I am. I need to look old, lined, with bags under my eyes and I think and I might get more sympathy! I recently went on a short trip to the Alps and more than one person asked me if they were right in saying that I was fine on holiday! As if all my symptoms went on holiday too! If one more person tells me it's stress Grrrr...

Maria xx

I hope you will take care of your B12 yourself. When a person is deficient, docs are not supposed to stop the treatment for a while. You need to have strong levels and maintain strong levels.

Chances are they didn't bother or know how to find out how good your stores were or how well you store the vitamin before they stopped it. Most who have good, strong stores can operate on those stores for months to years, but that is not supposed to be assumed.

rose

Stores
 

Hi Rose

Both my family doctor and my gastro tested my B12 levels. It was around 1000 back in February (after three fortnightly injections). I wasn't told what the second one was but it was down to 275 by the beginning of May, it took three-four months to drop that far. I don't absorb any B12 because of the Coeliac. One injection of 1000mg of Hydrocobamine wasn't enough to rid me of my symptoms. Both doctors said it would be fine for six months and I was given a form to retest in July. However (and luckily), my family doctor agreed to test me last month and said that it wasn't down to the accepted level of 160 but would give me one injection for the next three months and stop again. I know I had many symptoms well before it ever reached the eventual 140. My folic was down to 9 from 37 in the same time period (originally it was 4.something). I'm presently taking tablets of 10mg per day (prescribed) but I only take 5mg as I feel it's enough.

The accepted level of B12 in the UK and the Netherlands is 160. In the UK I was once tested and it was 265 and I was asked if I drank a lot of alcohol(:eek: ) and when I said no it was retested the next month and I was told it was fine.

I am just waiting to see my doctor and have booked an appointment to see the gastro earlier than planned but not until next month. If I don't get any joy I'll take matters into my own hands and may also do as you suggest regardless. Thanks for the advice. All the advice on here has helped me. And also I now remember that it was here that I saw the info on the gluten file and realised that I might have coeliac. My niece has now also been diagnosed with it.

I'll certainly look into your website.

Maria xx

Maria,

Frightening. Even more so is the fact that there are doctors here in the USA so far behind they think that the time to become really is concerned is when the B12 test comes back well below 100. There is incredible ignorance out there. I was within months of death at 138.

Also alarming: all that folic acid and not enough B12. An absolute no no, even among most of those who are quite ignorant otherwise.

Did they test you within a days of a shot? How long between the last shot and the drawing of test samples?

rose

Hi Rose

Yes, I think initially they did test me within days of the third shot. The second test wasn't and was a month to six weeks after the initial tests, but I don't know what that result was. But with this 160 level in mind I'm sure whatever it was it was thought okay. My doctor wanted me to have the folic all the time, but I thought it might mask the B12 problem so didn't go back for more. He gave me again enough for two weeks double dose (the same as he did before in December) which I've spread to a month. I was pretty ill too when my level was 140. I am going to talk this out hopefully on Tuesday. My GP surgery was closed this week and I prefer to see the same doctor. I'll let you know what he says.

Maria xx

Hi Rose

Well, my doctor listened. He wants me to have regular shots and said I must be eating the B12 for it to go down so fast. I'll see how it goes and hope I improve. He has also refered me to a specialist for my thirst/frequency problems. He wants to check to see if I have diabetes insipidus and if not then I see a urologist, and failing that then it must be part of my neurological problems caused by my lack of B12. I rest my case.

Maria xx

What is the correct ratio of Folic Acid to B12?

It isn't really a ratio.

One must make sure they have a full store of B12 and continue getting enough to keep the stores full as small amounts are used. So, in case a person malabsorbs severely, at least 1000 mcg per day is good insurance.

Folate of folic acid is not stored like that (nor is any other nutrient), and it must be eaten or taken regularly for daily use. It would not be outrageous to take 800 mcg folic acid, and some people take much larger doses are taken therapeutically with a doctor's help. The extremely large doses are usually not needed or recommended.

The important thing is to get enough of both, and NEVER to take folic acid when not sure of getting plenty of B12. Of course, one should make sure to get plenty of B12 whether taking folic acid or not. The reason this is mentioned in many places is that when people need B12 but are given instead folic acid, they can be damaged terribly.

One does not need to worry about a ratio of B12 to anything else. One just needs to be sure to get all nutrients and have or develop a strong store of B12.

rose

Rose, I think you said the b12 your suppose to take on empty stomach? If so or maybe I'm wrong I thought they were absorbed better with food. Also do you take the b complex with food or with the b12? Rose also I was reading some of the archive post and a lady was thanking you becuase the b12 helped so much and how she got off the neurontin. I have been having hard times with all the meds. Have you found any luck with meds or are you more on the vitamin/supp. I know everyone is different and am going back to the neuro next week to try new meds or change dose. I have been on neurontin,lyrica,cymbalta,elavil. Thanks and sorry to ask on your thread. I hope you feel better.

B12 should be taken on an empty stomach if you want to get the most out of it.

I take B12 without absolutely nothing else. And at a different time of day, usually with food, a B complex.

No meds.

No problem. :) I prefer people ask questions on these threads, so that others might benefit as well.

Thank you.

rose

Thank you. DId you used to take meds? I keep trying to find the right one or dose but basically just feel sick. On the note of b12 or b complex or maybe magnesium could any of these cause nausia or dizzy feeling? I'm trying to find the source of my stuffy head,dizzy,nausea but it could be from the prescription meds or a new symptom of my pain. Thanks again.

No, I didn't.

Those symptoms are not likely to be due to the supplements. And if they are due to the B12, they are a very good sign.

Very likely at least some of them are due to the meds. I would speak with a pharmacist to see whether they might be reason to get off something.

Best wishes to you.

rose