B-12 - Combination of methyl-cyano?
 

Hi,

One of my female relatives has been diagnosed with B-12 deficiency...after a long time of suffering ( blood report stated a level of 205) and low haemoglobin content(11.1).
Doctor has advised to take 1000mcg of B-12 and 400mcg of Folic Acid .
I have been studying a lot about B-12 deficiency and looks like her symptoms are because of that ( fatigue,sleeplessness, irritability, general weakness, long/heavy periods etc...)
For now she is taking 1000mcg of cyanocobalamin(timed release) and folic acid.One each daily .

My question is -
- Should she take methylcobalamin instead of cyano , will that be better ?
- Or can both cyano and methyl be taken at same time ( 500mcg of each ? )
- B-12 tablet label says it is timed release tablet , is that helpful in her case or no ? Roses's website says it does not .Any particular reason for that ?

Your help /inputs are much appreciated . This forum is extremely useful.Thanks.

Re:
 

Would like to add to above thread , that she is suffering from Hypothyroidism. following questions , can someone relate to it or have heard anything about it :

Does B-12 deficiency cause :
- long/heavy periods ?
- Does it relate to irritability , sleep troubles?
- Severe back ache .

Is there anything else that can be taken apart from 1000mcg of methyl B-12 and 400mcg of folic acid ?
Too many questions , but any help is much appreciated . Thanks.

I would take at least 1000 mcg all at once. I would take the cyanocobalamin until able to get the methylcobalamin, and then switch entirely to methylcobalamin. Then, after a while on the methylcobalamin, if she wants to use up the cyano, fine.

Could use a combo of the two. The methylcobalamin right away would just cover some of the rarer reasons she might benefit more from that form.

Timed release is a very bad idea because if she malabsorbs severely she will get nothing from it. And even if she doesn't malabsorb severely now, it could be worsening and move to that, in which case she would get less and less, until eventually zero.

Yes, B12 deficiency can cause those things. It affects individuals in many different ways, and those are on the very long list of possibilities.

rose

Re:
 

Thanks Rose.

Since then she has started taking methyl b-12 (jarrows...as suggested in other threads) .
In everybody's experience reading this , how much time it takes for body to recover to significant extent ,if not fully ? Should she start feeling "energized" let's say after a month under normal circumstances.( if she had b-12 level of 205 in her blood test) .
Are there any "signs" of body recovering ?

By the way , there was no improvement after taking methyl b-12 after week or so.

I don't know if this is the right forum , but in her MRI report one of the sentences said - " mild ethmoid sinus mucosal thickening" . what does this mean ? Any ideas? .
Thanks.

There is no answer to that question. Depending on the extent and type of damage, and the individual's ability to repair, substantial improvement can occur within weeks or years. It is rather common for a response to be noticed within a couple of weeks, but some people go for many months before seeing the improvement their bodies have been working on without their knowledge.

Do check out my website. There is a page on repairs and the often weird and long process.
rose

Read "repair" page on your website.Yes,it answers the question but does not address my anxiety of seeing her getting cured fast :)
Thanks for all your research into this .
Can I ask your experience with deficiency , how long you were affected by it and how was the recovery ? Just to want to listen/read other's experiences .
If you already have answered this question someplace else , then just point to that URL.

My recovery has been extremely long and difficult. My motor function was affected severely (and that is probably least likely to recover), as well as mental ability, vision, and too many other important things to list in a moment.

I had posted extensive information over years on the old braintalk forums, but most of that was lost in the big crash. I was damaged subtly for a long while, and then when my motor function began to deteriorate fast I went to doctors. They fiddled around and allowed my central nervous system to continue damage for well over a year longer. By the time I was diagnosed every system had been affected to one degree or another.

I have seen people with very little damage repair and resume their old life within weeks. However, even those often take a few to many months. Plan on slow going, and if it is fast you will both be thrilled.

But those of us who had central nervous damage and were damaged much more severely get what we get, and the going is very slow. Lots of ups and downs, much weirdness, and no guarantee of recovery, although most people do recover at least some.

rose

Hi,
I had hyperthyroidism due to Grave's Disease. They "nuked" my thyroid and I now have hypothryroidism. My periods went from very light to extremely heavy. Definately know it's linked. It also causes tiredness, so if she can't sleep it might be the back pain. As far as the B12 goes- I'm borderline anemic if I don't take high doses of it. My doc told me that people with autoimmune disease often have low B12 levels. Is her hypothyroidism due to Hashimoto's Syndrome. It a very common cause of it and it is a autoimmune disease.

Autoimmune malfunction causes much if not most malabsorption of B12.

rose

Sarahin, thanks for sharing the info. She has hypothyroidism , but I am not sure what is the cause of the disease , will ask doc in our next visit.
So what did you do for heavy periods , is there any medication to help reduce that ??That is major cause of weakness .

Rose, yes you are right I read about that too autoimmune disease leading to malabsorption of b12.

By the way, in latest test B12 level increased from 205 to 322 , is that a good increase in one months period ? will it be considered that she is not suffering from malabsorption???

Thanks.

It sounds likely that she malabsorbs severely. It also is likely that the first B12 result was not accurate and that she may have been lower than it suggested.

Many doctors do not know that people who malabsorb severely can absorb about 1% of a very large dose. So many doctors would assume that she does not malabsorb severely.

Even worse, many do not know that even more people cannot absorb B12 from food, but can absorb just fine from a supplement. Those people would increase their level MUCH faster than she has on even a smaller dose than that.

I would continue with at least that dose (actually, I would increase it), and, over time the stores should become filled and the level increase a great deal.

It is also likely that she does not absorb iron efficiently. If she has lost intrinsic factor, she probably also lacks sufficient stomach acid to absorb iron well.

Has she had a ferritin test to see what iron stores are?

rose

Doctor mentioned after the test that he would have wanted to see B12 increase significantly and not just from 205 to 322 in one month.He suggested to continue the dose for around 3 months and asked to take b2 and b6 also and then if it is still low then go for injections.

Rose, you suggested increase b12 intake , increase from 1000mcg to ..?
Anything above 1000mcg is too high or may have negative effects?

Not sure on ferritin test , but her haemoglobin was ,if I remember correctly around 11.6 (low) in last test, before she started having b12.

She used to feel some kind of tingling,burning sensation in her nerves before she started taking b12, and it has not changed , does that mean anything?

The medical textbook dose of oral B12 for someone who may malabsorb is: 1000 mcg - 2000 mcg. That is using cyanocobalamin, the least of the forms of B12.

Using methylcobalamin, many many times those amounts have repeatedly been proven safe and sometimes effective in people who are not even B12 deficient.

The only danger is in having too little B12, and she should not have to wait to take a better dose. Time is important.

I hope you have copies of lab results. They are very helpful when you spend time to understand them and compare. Most doctors don't order a ferritin, and that is very sad because it is much more sensitive than the other iron tests. A person can have deficient stores in iron, which usually will show on ferritin result, while having great labs otherwise (CBC: hemoglobin, hematocrit, etc.).

Tingling and other sensory symptoms can occur both during damage and during repairs. It all depends on the person.

Please see my website for these subjects.

rose

Hallucinations
 

Does deficiency of B12 cause auditory hallucinations ? ( or visionary) .

If patient has auditory hallucinations ...does that indicate anything?
I was reading on Internet (http://www.diagnose-me.com/cond/C364379.html)
that Pernicious anemia can cause auditory hallucinations .

Does this indicate severity of person being affected by B12 deficiency?

Thanks!!

Even psychosis can be caused by B12 deficiency. People are affected differently and at different rates, so a symptom or sign that may not occur in many at all or until very late can occur early in some.

It is amazing.

I know that if anyone I love has any symptoms, especially neuro or neuropsychiatric, I want them to take B12 in the best form possible. It is safe and inexpensive, so there's no reason to take a chance.

rose

Thanks Rose ..(as always :) )


The reason I am asking is ...my wife suddenly felt depressed one evening ( no reason) and late in the night had auditory hallucinations .Will tell my doc. on my next visit..
(As you know... I guess..she is already on 2000mcg daily dose of methyl-b12)

It's not that she never had these kind of hallucinations before ..but I think its first time after she started the B12 dose..so was concerned and curious to know this incident's relation to b12 dose.
Yes it's weird ..somewhat scary..but looks like she has lot of courage to cope with all this !:)

Anybody else experienced (or know someone) auditory hallucinations in this forum or Rose if you know of people who faced it ? ...just curious.

You're welcome, as always. :)

I also would want her B12 to go to more than 322 in one month. She may have been much lower than the first result showed. That is common.

I would take 5000 mcg. And if she wants to take more, that's fine. It's safe. The danger is in having too little.

The hemoglobin will likely improve if it was lower due to B12 deficiency. But that is not always the case, so if it doesn't change don't assume she didn't need the B12. I hope we get a ferritin result.

Regarding your most recent post: Since she had been taking the methylcobalamin prior to the depression and hallucinations, it is possible that it is a reaction and, thus, a good thing. I hope that's the case, and if it is, she is likely on a fast track to improvement. Unfortunately I cannot guarantee that that is what is happening, but judging from her weak B12 result, and the still weak result indicating she was probably very low, it is very likely this is the case!

"Weird" is the word many of us have independently arrived at to describe the healing process when significant damage was done. I and others have experienced equally weird things, although not necessarily exactly that. At one point in my brain repairs, I experienced what I could only describe as bipolar episodes----not long after that hit and began swinging back and forth more and more rapidly, I made a huge leap in cognitive and mood improvement and the bipolar symptoms stopped.

Best wishes to both of you,

rose

Hi med,

When I first began B12 replacement I also began using melatonin to help me sleep. It belongs to the B vitamin group in some way that I'm not able to describe right now.

I found that when I ran out of the melatonin, that my periods became extremely heavy again. (They were such a problem to me for many years.)

Is she using a sublingual form? I expect so. If not... it may not be doing much good.

I would FOR SURE say that the methylcobalamin is better. It can actually regrow nerves.

Our bodies have to convert cyanocobalamin to methylcobalamin in order to use it, so it's better and a person gets more benefit by simply taking the methyl form to begin with.

For me, a B12 shot a month brought tremendous improvement to my memory... but for the really big results, like stopping the extremely painful peripheral neuropathy I had in my right thigh, I needed much much more B12.

For that reason, I suggest as my neurologist suggested to me, that people keep notes, to see what is happening with them.

I've had so much stress lately and am so exhausted from it that I haven't been on the board much recently.

You might also look at your relative's fingernails for an indication of how much B12 deficiency damage there is... very high ridges take a long time to go away... when mine began to go away, my peripheral neuropathy began to go away too.

:)

Melatonin is a hormone, and important too, and there are probably more connections than anyone knows.

The dose is the important thing. You may or may not get a bit more with sublingual form.

Yes, cyanocobalamin can provide for most people the B12 they need, which in turn may allow repairs to be made. But methylcobalamin is better at producing results, allowing an amazing degree of nerve growth in some cases. If it is available, it is the best choice.

Any of us who makes repairs is fortunate. There are some who do not. I'm glad your memory results came relatively early. Often mental (and motor damage) repairs come much later if at all.

rose

At the time that I ran out of melatonin and had my period so heavily again, I was taking a couple of them a night...

Now I take the smallest amount available as I understand that too much can trigger our bodies to think we don't need to sleep.

I think that melatonin is something like CoEnzymeQ10 -- that is, it is a part of the B complex, but not a B vitamin.

:)

This is interesting .Melatonin.Should I be consulting a doctor before taking it ..or is it safe to go ahead and take it?Is there any kind of dosage?

Just browsed on Internet ..looks like Melatonin helps in Migraines too.

REAL IMPORTANT TO NOTE: Different people need differing doses of melatonin....I cannot take more than 300 MICROgrams whereas some people need a lot more

If I take a higher dose, I dont sleep as well and I am groggy and fuzzy next day, whereas the 300mcg before bed (my son takes 600mcg) works just great!

Chemar, Thank you for sharing ..
I guess we'll start with a smaller dose first and see how it goes.

I was going to mention about melatonin, but was just not feeling well enough to post for a couple days...

I was going to mention that I used to take the 3mg. But then when I read the material in... I forget where I read it, but maybe Prevention magazine, about less being more, I switched to the 1mg, and they work just great.

But... I'm also taking more magnesium now. I take it when I have Vitamin C during the day, or calcium.

Just to give an update ...

my wife has been experiencing a lot more symptoms in last 3 days or so...
- shortness in breath...once in a while
- pain in left leg and arm has increased ...
( she used to feel that couple of months ago before starting b12).
- sleeplessness
- had a terrible body ache (over entire body) early in the morning ..was unable to getup from the bed.
- feeling weird
- feeling uneasy in stomach for last 3 days..(pain)

Again , it's not that she never had all the above symptoms..she used to feel like that before taking b12 frequently. But her condition like this has been first time(bad health continuously for 3 days) after she started methyl-b12 dose(2 months ago...2000mcg/day).

I have read in this forum that symptoms might get worse after someone starts b12.but on our last visit to the doc. , i asked this question, his answer was ..it depends!....

Hi Med,

Boy, the thing about her stomach is worrying to someone who had tetanus because I never felt my stomach feel that way until I had tetanus, and it was a very unsettling feeling.

Is there any chance your wife has a wound that she doesn't feel because of peripheral nueropathy numbness?

Tetanus is very uncommon... but not unheard of.

Has she had a Tetanus shot in the last ten years? (I hadn't had one in 30 years.)



Second thought: has she taken extra vitamin C or magnesium? Those things can make my stomach feel weird ... but it usualluy goes away in a couple of hours.


I'm not a believer in the gets worse before it gets better frame of thought.

B12 has always helped me get better, and once I saw how much more of it helped me, I wished that I'd had more earlier on.


Do you guys drink tea at all? In England people would serve a sweet cup of tea with milk when things were stressful, and it was very calming.


When I have the pain in my left arm thing, which began when there was inordinate stress, I have an extra B12 shot... and it helps.



Weird noise here, better go check it....

ConsiderThis,

Every word and experience of forum users is helpful :)

To answer your question, she has taken tetanus shot coupe of months ago.
Yes, we do take tea with milk and sugar and you are right about it , it helps her a lot . Sometimes when she does not eat anything tea keeps her going ...

Yes our next visit to doc is this week , so lets see what happens.

Ferritin Test Result
 

Today we received Ferritin test results for my wife :
( I remember Rose had pointed that out in one of her replies and she was 100% right on that ) .
Her Iron levels in the body are very low , I don't know much about how to interpret lab results ,but here it goes :
Iron, Serum - 31 ( Low)
Iron Saturation - 7 ( Alert!)
Ferritin, Serum - 5 (Low)

I am sure doc is going to give prescription Iron medicines .
But anyone in this forum has insight into these results? Any advise...or experiences????

Thanks, you lifted my spirits.

So down so long due to all the things that have been going on for years.

I'm glad you found out about the iron. Kudos to Rose.

One thing I just want to mention, is that I was iron deficient all my life... since I was a kid... I had blue skin under my fingernails... I used to get so dizzy when I stood up...

but then after B12 replacement therapy... after a lot of B12, I've not ever had that problem again...

so I have to wonder if that's because the size of my blood cells has improved and more iron is getting carried around as a result...

I can't think of any other reason that I'd have always always been iron deficient, and now not...

Yes, low!!!

So glad the low iron was discovered. Apparently it would have been with the usual tests, even without the ferritin test, but in many people only the ferritin will show the problem.

I assume that besides building up her iron stores they will make sure she isn't bleeding somewhere (besides menstruation if that is an issue).

People who malabsorb B12 usually have insufficient stomach (gastric) acid. That often results in a lesser malabsorption of iron and calcium.

Best wishes to both of you,]

rose

Karen,

I may have missed your answer elsewhere. Did you by any chance stop menstruating around that time?

rose

lol

no,

I have to go back to my time lines and see, but I think I noticed that the skin under my nails wasn't as blue anymore... at the same time I still had LONG periods. Way past when I should have had them. I'd go through menopause, then with a lot of stress I'd have a heavy flow again...

I also know that my periods were "normal" when I was taking melatonin, and would come on unexpectedly when I ran out...

Also, I could always tell if stress had done a number on me if I got my period (when I wasn't supposed to) or my gums bled... then, if I had a B12 shot the bleeding would stop.

I still have nosebleeds sometimes, and that too, for me, is an indication that my B12 is too low.

You just have to get to know yourself.

Time Lines help.

:)

Hi Rose, I checked my Time Line and saw that on 8/2/99 I noted that my fingernails were no longer as blue underneath. That was 8 months after I was shown how to give myself the shots. I can't remember if that was after my neurologist told me to have more shots... I read it, but I can't remember. I'm too tired to go back and read it again.

I still had my period for years after that... (which my Time Line also shows)

So, I think B12 makes the blood cells able to carry iron better, or something, because of the way it allows blood cells to divide properly.

:)

Also, B12 deficiency can affect the efficiency of the heart. It did in my case, and although I didn't develop blue fingernails, I did develop an inability to function mentally after walking a bit.

Thank goodness, that and the tachycardia and panic attacks stopped within a year of treatment.

As one researcher/writer stated: "B12 deficiency affects every cell in the body," and since we have different genetic makeups, different environments, etc., it affects us in different ways and to different degrees early or late in untreated deficiency.

rose

Good point, Rose, I think that's why it worries me so much that my paternal grandfather died of a heart attack (at an age 40 years younger than my Polish grandfather who gardened a lot). My paternal grandfather worked under stress most of the time.

I know I've often felt uncomfortable chest sensations.

I also know that I found a research paper linking something to do with the left ventricle to low B12.

I remember that when I looked at my heart test, I forget what it's called, that there was something a little out of the ordinary with my left... but the doctors said it wasn't important.

Which of course now reminds me of how Clinton had masses of tests that apparently the doctors didn't find anything important in, just before he had to have emergency heart surgery....

Plus, all the material linking homocysteine with B12... and heart problems.

There are just SO MANY reasons to take B12, preferably the Methylcobalamin form.

:)

I checked my wife's fingernails...and they do not look bluish in color ..

But to give an update ..doc(endo) said that take Iron tablets..which one ..or how much he said we will have to try what suits her.
Anyway , I read about proferrin ...their site says its heme Iron which is easily absorbed by the body and much better than normal Iron pills as it is easy on the stomach ( so no or less constipation)..Doc did not know about this ..but I am thinking will give it a try anyways...
b12 will continue as it is .....2000mcg/per day along with B2(100mg),B6(100mg),folic acid(400) and yes melatonin (will start taking that this week )
so will see how fast the recovery will be.....:)

Sorry im too lazy to go back and grab the melatonin quote. I know its hard to find melatonin haters in this pro-vitamin/supplement/nutrient/herb place. but i am one of those, I heard that it messes with hormones, causes irritability, mood changes, decreases blood flow, crazy nightmares and in some patients makes it hard to breathe. I had a horrible experience with it as it exacerbated some of my mental problems. I am now taking inderal, and I heard that melatonin takes away the bad effects of inderal, so I'm hoping the reverse would be true in that it will take away the bad effects of melatonin. I think melatonin should have a label which says 35 years of age and older. cause when young people take it, we dont really need it so it probably causes an overflow of some sort, wreaking havoc on your hormones and thus creating some physical/mental problems

quick rose rose need your help, ever since i started taking methylcobalamin with the dosage on my signature(1mg-4mg) man hands started feeling very cold. im starting to get slightly worried. waht should i do? i think maybe i shod lower the dose(4 now) to like 500 mcg-2000mcg waht do u think? it just so happens that this cold feeling happens especially after I crack my neck to relieve some neck tension.

Sounds like you have a couple of things going on, and also sounds like there is some connection between the hands symptoms and your neck. Makes sense. Also, if you do need B12 (or specifically methylcobalamin), it is likely that your nerves are more susceptible to problems, and in that case sometimes manipulation can make a difference in symptoms without getting to the root of the problem.

Hmmm. And maybe you shouldn't be cracking your neck.

If it were me, I would continue with the methylcobalamin. If it's doing anything it is helping.

rose

hmm ok will do, i forgot to add that ive been pretty loose lately. ever since ive started with the methylcobalamin. and recently I have had(kinda weird mentioning this) green bowel movements. which is weird cuz I've never had in my lifetime, and i hafta say it must be due to the methylcobalamin, since ive never taken it b4.