Vitamin B12 aka cobalamin: Essential for mood, nervous system

[savinggrace]

Cathnz,

I hope my story helps empower you.  I was paralyzed by fear of de-stabilizing myself for over 2 years.  I took complete control immediately because no doctor was going to go slow enough to let my nervous system adjust.  They wanted to give me big loading doses often.  I knew that would not be good.   I am not sure I have completely adjusted but I think I have....I am not quite as fearful before the shots.  I probably need more but I am in the same place with vitamin D, so I have to work on that along-side the B12 so I am staying at 400 mcg. (since it brought my MMA and homocysteine to normal)

 

If you need any help, or have any questions, please contact me.  I explored all the forms of B12, all the modes of ingestion, and actually ordered individual vials of hydroxycobalamin from Germany as it was far cheaper than what I was paying here (though it was a hassle and it took 6 weeks)

 

Now if I could only gain some courage from you!  I need B6, badly...many symptoms and tests show that I do.  I find it way too stimulating...even in the P-5-P form.  How much B6 do you take?  Do you have trouble sleeping?  All the B vitamins are very stimulating to me but I do think that my brain is learning how to sleep much better on the B12...onto vitamin D and hopefully, eventually, B6.  I am trying to get folate from food which is easier said than done, but it is better than nothing.

 

Let me know if I can help.  By the way, I got the individual vials of hydroxycobalamin from overseas for a couple reasons...they last 2 years, they are really cheap, and there is much less risk of contamination AND no prescription is necessary.  When I started injecting, I paid big bucks to a compounding pharmacist here for pre-filled syringes and I was wasting more of it.

 

I am waiting until fall to order more as I didn't want the B12 affected by extreme temperatures when shipping.

 

Good luck.

Grace

[Estman]

On 7/29/2022 at 11:32 PM, savinggrace said:

Cathnz,

I hope my story helps empower you.  I was paralyzed by fear of de-stabilizing myself for over 2 years.  I took complete control immediately because no doctor was going to go slow enough to let my nervous system adjust.  They wanted to give me big loading doses often.  I knew that would not be good.   I am not sure I have completely adjusted but I think I have....I am not quite as fearful before the shots.  I probably need more but I am in the same place with vitamin D, so I have to work on that along-side the B12 so I am staying at 400 mcg. (since it brought my MMA and homocysteine to normal)

 

If you need any help, or have any questions, please contact me.  I explored all the forms of B12, all the modes of ingestion, and actually ordered individual vials of hydroxycobalamin from Germany as it was far cheaper than what I was paying here (though it was a hassle and it took 6 weeks)

 

Now if I could only gain some courage from you!  I need B6, badly...many symptoms and tests show that I do.  I find it way too stimulating...even in the P-5-P form.  How much B6 do you take?  Do you have trouble sleeping?  All the B vitamins are very stimulating to me but I do think that my brain is learning how to sleep much better on the B12...onto vitamin D and hopefully, eventually, B6.  I am trying to get folate from food which is easier said than done, but it is better than nothing.

 

Let me know if I can help.  By the way, I got the individual vials of hydroxycobalamin from overseas for a couple reasons...they last 2 years, they are really cheap, and there is much less risk of contamination AND no prescription is necessary.  When I started injecting, I paid big bucks to a compounding pharmacist here for pre-filled syringes and I was wasting more of it.

 

I am waiting until fall to order more as I didn't want the B12 affected by extreme temperatures when shipping.

 

Good luck.

Grace

Hi Grace,

My B12 level is around  226 pmol/l   (19 .07.22)

 Folate levels 11.8 nmol/l

 

But what could be a normal level so that it does not cause depression?
It is said that over 350 this number should be better than 500-600
In Japan, the recommended range was supposed to be 400-800
I would like to start taking my B12 again, but I'm a little afraid of over-activating.

[savinggrace]

Hi Estman,

Looks like you wrote this some time ago but it just came through to my email  today. 
 

B12 levels in the 200’s are low, but depending on the range for your lab it might not be marked as low. Your folate is likely in range but on the low side. Test results should be combined with symptoms to make a diagnosis. No one gave any attention to my B12 level until I asked for an MMA test (methylmalonic acid) and a homocysteine test. Both were double the high end of the range and diagnostic of severe B12 deficiency. I had been symptomatic for years but no doctor figured this out. (Actually a doctor who participates in another forum I am on suggested these latter tests so I knew to ask for them).  I had been grossly deficient for a decade before I was told I need to supplement stat. I have had some improved symptoms even on lower dose supplementation than routinely prescribed. I took a larger dose a week ago and did not sleep for two days so I am sticking to 300-400 mcg. Injected about every 3 weeks. I am getting some clear signals from my body when I need a shot. This has been a long arduous road and it is making tapering impossible right now but my high MMA and homocysteine were life threatening. 
 

Read up on B12, and look at the ranges on your blood work. If unsure ask for MMA and homocysteine tests. There are others but these respond quickly to supplementation and tell you if you are on the right track. 

 

Grace

[unblocktheplanet]

I’m reading Altostrata’s thread with great interest. Self-injecting B12 was one of the routes I tried when I developed tolerance to Mirtazapine & Trazodone. Ineffective for me.

 

I weaned Mirtazapine in February. Otologist prescribed B12 for sudden onset deafness, after two courses of steroids. I self-injected cyanocobalmin (the only kind available here). After only three days, I crashed. I eat seafood, eggs & dairy but, at 72, I am probably deficient in B12. Of course, I’ll never know whether B12 was the culprit or if this wave was random. 

 

SA’s position is that all Bs are activating when one is tapering & possibly long after actual weaning, as PAWS.

 

It’s easy to pin one’s symptoms on one thing. For example, I have many of the same psychiatric symptoms as those from subclinical B12 deficiency or pernicious anaemia. And I’m Hashimoto’s, so autoimmune. MMA lab testing is not available here.

 

I’ve relied on this group for B12 info: http://www.b12d.org/ and their excellent book, Vitamin B12 Deficiency in Clinical Practice, by Dr. Joseph Chandy, available here for free download: http://www.b12d.org/book. *Note: the B12 doses recommended may be activating!

 

@savinggrace, I would be most interested in knowing your European source.

 

All this is sure a maze in the cornfield, eh. Then there’s the rabbithole of pyroluria.

 

So the question is, do we supplement the essentials, such as B12, methylfolate (NOT folic acid which is poorly absorbed), Vitamin D with K2-MK7, and Vitamin D regardless of how wavy we are from tapering, weaning, PAWS???

 

 

CJ

Bangkok 

[annatino]

On 11/2/2011 at 6:21 PM, Altostrata said:

If you have been tapering psychiatric drugs or have withdrawal syndrome, your nervous system may well be sensitized to B vitamins. You need to be very careful about all B supplements, they may be too strong for you and trigger activation.

Thise multi B vitamins threw me into bad anxiety after I stoped Prozac.

 

I knew that’s stress and B vitamins triggered my anxiety so bad.

 

I did research and many people confirmed the dread feeling after taking them.

[Altostrata]

This post in this topic very carefully explains how to gradually increase intake of a B12 supplement 

 

[unblocktheplanet]

Thanks, Alto. I did read this thread. I dropped all supplements at least two months ago. Since finding the wonderful SA community, I've reintroduced Magnesium & Omega-3.

 

Although I would describe myself as a vegetarian (since 1966), I've always eaten seafood several times a week, as well as eggs. & dairy.

 

I eat a good diet, no junk food, little white sugar or flour, good oils. But at 72, I may be deficient in lots. Like many folks, I was trying to cover all the bases with supplements.

 

Nit quite sure how to proceed. Started a wave & decision-making is impaired, to say the least.

[Altostrata]

Please post any questions pertaining to your particular situation in your Introductions topic.

[savinggrace]

On 8/12/2022 at 11:31 PM, unblocktheplanet said:

I’m reading Altostrata’s thread with great interest. Self-injecting B12 was one of the routes I tried when I developed tolerance to Mirtazapine & Trazodone. Ineffective for me.

 

I weaned Mirtazapine in February. Otologist prescribed B12 for sudden onset deafness, after two courses of steroids. I self-injected cyanocobalmin (the only kind available here). After only three days, I crashed. I eat seafood, eggs & dairy but, at 72, I am probably deficient in B12. Of course, I’ll never know whether B12 was the culprit or if this wave was random. 

 

SA’s position is that all Bs are activating when one is tapering & possibly long after actual weaning, as PAWS.

 

It’s easy to pin one’s symptoms on one thing. For example, I have many of the same psychiatric symptoms as those from subclinical B12 deficiency or pernicious anaemia. And I’m Hashimoto’s, so autoimmune. MMA lab testing is not available here.

 

I’ve relied on this group for B12 info: http://www.b12d.org/ and their excellent book, Vitamin B12 Deficiency in Clinical Practice, by Dr. Joseph Chandy, available here for free download: http://www.b12d.org/book. *Note: the B12 doses recommended may be activating!

 

@savinggrace, I would be most interested in knowing your European source.

 

All this is sure a maze in the cornfield, eh. Then there’s the rabbithole of pyroluria.

 

So the question is, do we supplement the essentials, such as B12, methylfolate (NOT folic acid which is poorly absorbed), Vitamin D with K2-MK7, and Vitamin D regardless of how wavy we are from tapering, weaning, PAWS???

 

 

CJ

Bangkok 

 

You are right.  Do we supplement and just try to survive the waves or do we not supplement and stabilize our nervous systems and not suffer with the waves.  I did that (avoided supplementation) for a very very long time and I now find myself with serious chronic and painful conditions that I have to treat....and thus I am in a wave all the time.  (worse than the waves than are normal and constant for me).  I don't get windows but that is because I am barely able to taper with all my serious and chronic health problems.

 

Let me know your specific questions and I will try to help you through the process. 
 

Grace

 

Edited August 19, 2022 by ChessieCat
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[Altostrata]

I have always been hesitant to publish details of my own experience because I fear people might copy what I did.

 

It so happened that I did not get a bad reaction from B12 injections, but if I had known then that B12 was potentially activating, I wouldn't have injected it regularly, I would have built up gradually with crumbs from a sublingual tablet, as I have described several times in this thread.

 

People in withdrawal become hypersensitive to supplements and other substances, each in their own way. We urge people over and over that if they want to try something, try a very little bit first and then build up.

 

I don't know how much more we can do in our advice. You need to use your own judgment.

[savinggrace]

Alto,

After many timid attempts to address my severe B12 deficiency (“crumbs” of sublingual methylcobalamin, then tiny injections as it was clear I have a malabsorption problem) I studied for months and was able to get a script for self-injections of hydroxycobalamin. I did poorly on the tiny doses of methyl injections  (multiple mutations affecting B12 methylation/ metabolism…or just hyper-sensitized as I am to anything new?). I read and studied and decided to just try the hydroxy injections. The prescribed dose was 1000 mcg. 2/week but I started with 200 mcg. about every 3-4 weeks. A year later I am up to 500 mcg. at 3 week intervals. I must admit I feel the last  500 was too much but it has totally stopped my air hunger which was a debilitating problem. However, I have only been sleeping 2-3 hours/night since this last injection so I may back up to 400 mcg. To your point…with determination and resourcefulness we can secure a script or an oral supplement  and self-inject or dose  to slowly titrate up to tolerance. I did not do this without proper testing and my functional med doctor knows what I am doing. The point is, at the outset I didn’t tolerate a 20mcg. injection of methyl. 2 years later I have normalized my B12 deficiency markers, wiped out a very disturbing symptom (air hunger) and continue to feel like I can supplement to the point of tolerance. This B12 is tricky stuff!

 

I read this whole thread and your story. Hoping to emphasize that there are many options/doses to supplement B12 without totally upsetting a taper. Slow and steady…

 

Grace

[Altostrata]

Good to see you've found your own method to gradually titrate up in dosage, as we recommend over and over here.

[unblocktheplanet]

Only game in Thailand, unfortunately, is Cyanocobalamin. I know lots prefer sublingual or injections but have oral doses worked for anyone? I can get 100ug tablets here, though Cyano-.

 

I have no known mutations nor am I deficient, to my knowledge.

 

Is trying this a risky gamble?

[Altostrata]

Please read this topic from the beginning.

[unblocktheplanet]

Alto, I got here from the beginning, though of course I may have missed some essential nug. (I try never to step into the middle or the end!) I suppose I'll have to go back & start reading again!

[unblocktheplanet]

Altostrata wrote this in Post #2:

 

If you suspect B12 deficiency, it's probably best to have a B12 shot before you start to taper a psychiatric drug, while your nervous system is still stable.

 

Many of us start to taper because the drug has stopped working or we are simply no longer feeling ‘right’. Perhaps some of all the symptoms which led us to psych drugs have returned. So the nervous system is not exactly stable.

 

B12 may be activating to an unstable nervous system. Perhaps my five days of Cyanocobalamin self-injections set off my current wave.

 

This causes me to wonder about Folate, too. Widely-available methyl-Folate should also compensate for MTHFR defects. But is it activating?

 

Alto mentions Zinc & Vitamin D, too. But are they activating?

 

Any experience on this would be helpful. Thanks! Hard to sort out when one is having difficulty making decisions anyway

 

CJ

Bangkok

[unblocktheplanet]

My recent B12 serum lab (MMA is not available here) tested very low.

NHS normal lab reference goes up to 1245 pg/mL. Mine is 451.97— one-third!

 

I’m 72. Deep in a wave, I have confusion, cognition & memory issues. It is all to easy for me to find many low-B12 symptoms: anorexia (weight loss), dizziness, weakness, heart palpitations, & tingling hands though it is pretty unlikely I have pernicious anaemia. Autoimmune Hashimoto’s is not mentioned in the quote.

 

Alto’s advice on the first post is not to take B12 if you’re tapering.

 

So my questions are:

1) Is AD burnout equal to tapering, therefore full-strength B12 should be avoided?

 

2) I am not actively tapering but still getting waves. If I’m waving, that indicates my nervous system is NOT stable—waves are withdrawal syndrome. May I take full doses of B12 (only 5,000 IU sublingual Methylcobolamin here)?

 

3) Or must I try the crumb method?

 

4) What about supping Folate (normal lab) & Zinc (no labs available here)?

 

Lastly, Vitamin D was mid-range normal in serum.

 

While I was supping B12, my levels were high so it’s unlikely I have gut or absorption issues even though I’ve aged.

[snowdog]

My B12 level was ok (318, where the exam says minimum is 211) but GP thought it will be good some monthly shots to help my neurological system recovers. 

 

Bad option. Know I'm more than one week in a bad wave. Today I ended up at the ER after feeling very unwell after a 20 min hard walk. Chest pressure, high heart rate, high blood pressure and even diarrhea. The tests for heart were clear. They said it was panic, but I should see a cardiologist (I did a treadmill test last october and, besides sinus tachycardia, the test was ok as was the eco). I do think I developed some sort of dysautonomia during my withdrawal, but things were improving before the B12 shot. 

[unblocktheplanet]

Sorry to hear of your bad reaction, @snowdog. I injected B12 five days in a row & it threw me into a wave.

 

I had to look up dysautonomia. Paradoxically, it can be the result of Vitamin B & E deficiencies.

 

Higher B12 levels are most desirable for depression but how to get there without activation?

 

Hope you're back on top soon, Snowie.

[unblocktheplanet]

Just got labs back. B12 is very low. Started 5,000ug sublingual B12. I decided on this strategy because I’m 60+ days into a really deep wave; I thought it couldn’t get any worse.

 

I was sure wrong! First panic attack since September 2019, agitation, dark ideation, hopeless.

 

Alto recommends starting with a tiny crumb of B12 & building up to a normal dose. Wish I had. Now I’m scared to even try that.

[Estman]

On 11/3/2011 at 12:21 AM, Altostrata said:

How to take B12

 

If you have normal B12 metabolism and get lots of B12 through eating animal proteins (there's no other way to get it), you may not need B12 supplementation.

 

If you are feeling run down, are stressed, of a certain age, or are not eating well, you may need B12.

 

B12 is stored in the liver and can get depleted by poor diet, stress, or age. If you have not yet started tapering a psychiatric drug, you might as well take some to be on the safe side. It's cheap and excess just goes out in your urine. (If you have started tapering, see below.)

 

There are three ways to take B12: Through injections, sublingual (under the tongue) tablets, or regular tablets. The shots and sublingual tablets are most effective.

 

The most common form of B12 is cyanocobalamin, which releases a tiny amount of cyanide atoms as it is metabolised. It is unknown what this does, but there are other forms of B12. To avoid the cyanide, sublingual methylcobalamin is a better form to take by mouth and hydroxocobalamin by injection.

 

The usual B12 dosage is 1000mcg per day. Of 1000mcg/day of sublingual B12, a tiny amount, perhaps 10mcg is absorbed by the mouth mucosa. This bypasses any absorption problems that might exist in the small intestine (as does an injection).

 

If you suspect B12 deficiency, it's probably best to have a B12 shot before you start to taper a psychiatric drug, while your nervous system is still stable.

 

The MTHFR fallacy

Much has been made in recent years of poor metabolization of B12 (and other B vitamins) in people with MTHFR genetic variations. A large, incoherent field of practice has been built upon this by integrative, functional, and alternative practitioners.

 

Only a very small number of people have MTHFR genetic variations that require special treatment. The rest are normal MTHFR variations that can be "treated" by simply eating lots of fresh leafy green vegetables, which contain the appropriate type of folate and other important nutrients for our bodies (but not vitamin B12).

 

Vitamin B12 cannot be found in vegetables, it exists only in animal products and in B12 supplements. Practitioners who treat MTHFR make a big deal about those who cannot tolerate B12 supplements, they are supposed to have difficulties in "methylation" that require expensive, elaborate supplement regimes.

 

This is unnecessary. People with MTHFR variations can take sublingual methylcobalamin. See below.

 

What to do if you can't tolerate a vitamin B12 supplement?

Some people do have difficulty taking B12 supplements and other B vitamin supplements -- they find the B vitamins in this form cause surges of anxiety, palpitations, sleeplessness, etc. (symptoms of nervous system activation).

 

If you have been tapering psychiatric drugs or have withdrawal syndrome, your nervous system may well be sensitized to B vitamins. You need to be very careful about all B supplements, they may be too strong for you and trigger activation.

 

If you get a bad reaction to vitamin B12 supplements, you might want to try a very small amount of vitamin B12 sublingual methylcobalamin first, perhaps a crumb of a 1000mcg tablet. You can take a tiny crumb daily for a week, then build up to 2 crumbs and eventually to an entire tablet.

 

If you get activation symptoms, you're taking too much, take less. You may be able to tolerate only a tiny crumb for months.

 

(I suggest methylcobalamin because, being already methylized, this compensates for any MTHFR-related "methylation" difficulties. It's fine for people who don't have MTHFR variations, too.)

 

My own experience

I apparently had low B12 when I went off Paxil, and B12 (hydroxycobalamin) shots helped me a lot in the first year of severe discontinuation syndrome. I started taking them in month 10 and I wish I had found out about it earlier.

 

I had been taking Zantac for two years while I was taking Paxil, and I suspect that caused a subclinical B12 deficiency, along with my being an older person.

 

I started out with B12 shots (hydroxycobolamin). They gave me a warm, tingling, relaxing feeling all over my body and relieved, to some extent, some of my withdrawal symptoms. I gave myself a 1000mcg shot every week for many months. I was probably very low in B12.

 

A few years later, I suffered a terrible setback, lost the ability to sleep, and was advised to stop all B vitamin supplements because of potential activation in my nervous system sensitized by post-withdrawal syndrome. I stopped supplementing B12. (The rest of the story is here.)

 

A few years after that (I had recovered my sleep), blood tests showed I was low in B12 (I was an even older person). I had had tests showing I had 2 common MTHFR genetic variations, which may or may not mean difficulty processing B vitamins.

 

I tried taking a 1000mcg subllngual methylcobalamin and found it uncomfortably activating (electrical sensations). I decided to try a tiny crumb and build up from there. Over 6 months, I increased to a normal 1000mcg tablet per day. My B12 blood levels rose. Now I take a 1000mcg tablet a few times a week to keep the stores in my liver topped up.

My B12 level has been dropping continuously (in September it was 234 pmol/L
And for the last six months, my digestion has become very bad
Digestion of particularly fatty foods or proteins
Taking a stomach acid and pepsin supplement has improved digestion to some extent
Unfortunately, it seems that there is also too little bile
I wonder if taking a bile-boosting food supplement would help increase B12 absorption?
I also try to add oral B12 in a small dose, but it can activate
It's like B12 absorption disorder from food even though I eat protein

[Altostrata]

Please take questions about gastroenterology and general medicine to the appropriate medical specialists. We cannot advise on dietary deficiencies here.

[Doctorsrcrap]

Does anyone know how long you should supplement for before getting re tested? And also how long you should leave supplementation off before re testing? 

[Altostrata]

If you're talking about vitamin B12 supplementation, please ask your doctor or find an authoritative source on Google.

[Doctorsrcrap]

OK thank you 

[Doctorsrcrap]

Can anyone help?

I was told I had borderline low b12 so I took the cyanocobalamin sublingual supplement. Then I got re tested. My levels had not gone up. 

If I'm having an absorption issue whst should I be taking? The methylcobalamin instead? 

[savinggrace]

I have a B12 deficiency and a malabsorption problem.  I tried tablets, creams, etc. hydroxycobalamin, methyl, adenosycobalamin etc.  I finally gave in and started injections.

 

I participate in a forum (based in the UK) that is solely about B12 deficiency.  Everything I know about B12 I learned there.  One widely affirmed tenet is that once actively treating for B12 deficiency (supplementing) numbers on blood tests are irrelevant.  From my own experience, I can tell you that B12 can be circulating in your blood and not getting into your cells.  A doctor on another forum I read, read my symptoms and prompted me to get an MMA (methylmalonic acid) test and a homecysteine test, which both would be good indicators of B12 deficiency.  I did so and both tests were sky-high, which put me at a high risk of stroke/heart attack.  THAT is when I knew that I had to get serious.

 

I now give myself my own injections at intervals that are keeping my MMA and homocysteine in line.  Well, my MMA went from 1.04 down to .1 recently (high end of range was .25) and homocysteine went from 25 to 15 (still a bit too high but influenced by other things as well).  The point is, and most doctors don't know this, is the B12 blood test is not accurate unless you have stopped supplementing for months.  (exact amount of time unknown)

 

I started very low and slow with the dose of B12 as you can see I suffer from a drug cocktail dependence which has caused most of my iotragenic health problems.  Protocol for injections is "loading doses" of 1 mg. once or twice a week for 3-6 weeks and then watching your symptoms and figuring out how quickly your body uses B12.  Because of interactions with my meds, I use the least possible, and inject 500 mcg. every 3 weeks with 500 mcg. folinic acid as a sublingual tablet.  (I likely need injections of that too)   Be careful as a B12 deficiency can mask a folate deficiency and vice versa.  They both can cause serious problems.

 

Good luck.

Grace

[savinggrace]

Doctorscrap,

 

I apologize.  I only read today's Digest post before I responded to you.   Much of what I wrote you may already know.  BTW, I use hydroxycobalamin.  I had anaphylaxis to cyano years ago and I found methylcobalamin was too stimulating for me.  It all took a lot of patience.

 

Grace

[arwen]

I am not a doctor, so I can say only what worked for me, I don't know if this would apply for everybody. I have been taking methylcobalamin (1000 mcg sublingual) for quite a few years now and it works well. I have it checked from time to time and it keeps it in the normal limits, I feel good, normal energy levels. I tried initially cyano, but it was way too stimulating. 

 

From my experience there is no problem if I skip taking B12 one day. I can feel a drop in energy if I forget it more than a few days in a row. 

 

 

[Doctorsrcrap]

I was told that my levels didn't go up because cyanocobalamin isn't already methylated so that could be the problem. However I have now seen there are many varieties of b12 you can get. How do I know which one I should be taking? 

It's very confusing and I'm feeling very overwhelmed 

[Altostrata]

Read this topic from the beginning.