I've been a vegetarian for 20 years. I ate mostly at home. My past live-in-partner for 14 years suffered from chronic fatigue and fibro and burning in her leg. She also struggled with memory problems, depression, and mood changes.
A few years after we moved in together, I suffered from on/off neuropathic problem with my left arm that put me in the hospital for 'heart check'. I also began to exhibit progressive memory problems that. It got to the point that every day I felt that the 'past never happened'. Since I am a writer and researcher (not in the health area obviously) I was nicked 'absent minded professor'.
I also struggled with balance problems while walking on/off and didn't like stairs. Then I began to get dizzy getting up and down, developed shortness of breath, and at times weird moods and suicidal thoughts even though my life was happy and I was living my dreams. Finally, I began to exhibit muscle weakness, which was odd since I lift weights and then BOOM I was hit with full on body neuropathy. I had it even in my mouth, but it was worst in hands and feet.
Ok, that is when I got scared and the tough man routine came to an end, I left the country to get tests abroad (MRI, Nerve Conduction, etc.) and nothing. Finally, I was put on heavy dosages of Lyrica, which wasn't very nice to my waist line, but it stopped the pain. Obviously, as my waist got bigger, so did my blood sugar numbers, so I was put on metformin and oh my god! did the neuropathy come back like an angry x.
I did some research and I found out that metformin can cause neuropathy, IF your B12 is low. I did some digging and found out that many of my symptoms could be caused by low B12. I asked my past live-in-partner to get her B12 checked. She did and it scored 75 pmo / 136 pg. I went in and started eating B12 sublinguals like candy for a few days (I think I was hitting 4000-6000 a day). My brother insisted that I get tested and stop taking sub. He is a chemist from Harvard and a Doc. I said fine. I stopped taking the sub.
I went to see the doc. I got the prescribtion and waited a week and half and got tested.
My number:
318 pmo / 430 pg
Was I wrong?
Is my B12 normal and I should look elsewhere for the cause of my problems?
Written by
ezedek
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Welcome here! I expect you have still a lot of the B12 sublinguals in your system. It takes more months than weeks to get that out again as your body is very careful with B12 and also recycles it besides taking it up daily (if that process works). So perhaps test again in 3 months to see how much you may have dropped would be good. Your symptoms do read very much like B12 def, but again a lot of other vitamin deficiencies can cause those symptoms.
Maybe it would be worth your while asking your chemist/doc brother to do some background work into b12 deficiency and establish the possible problems caused relative to the metabolic pathways the illness can follow.
....and I do mean background work as opposed to reaching for the most recent guidelines or protocol.
I researched B12 after suspecting my vegetarian sister was severely deficient with neuropathic symptoms. I found three books "Could it be B12" and "The B12 Deficiency Survival Handbook" invaluable as well as "Living with Pernicious Anaemia", and I quote from chapter 1:
" Writing in late 2011, Prof. David Smith and Prof. Helga Refsum said:
"We believe that the traditional cut off value of 148 pmol/lv is too low. We suggest that physicians should consider treating patients who show symptoms but have vitamin B12 levels above this value, particularly those in the low-normal range up to approx. 300pmol/l."
"This would mean that patients who experience the symptoms of B12 deficiency but who have B12 levels above the threshold that is currently used to determine deficiency would receive replacement therapy B12 and this could and should relieve their symptoms."
"Current tests are next to useless and vulnerable to interference resulting in normal values despite severe deficiency. Strongly advise using homocysteine and MMA for more accurate diagnosis when symptoms suggest PA, both of which will be raised if the individual has low B12. It explains why 55 per cent of PAS members waited two years or more for diagnosis whilst 14 per cent waited five years."
The UK NEQAS Haematinics advised in early 2013 that patients who were symptomatic but whose serum B12 was 'normal' should be treated regardless of what their blood test showed."
The book addresses the failings of the current test and the fact that doctors do not fully appreciate the awful consequences of false negatives. It hopes to revers the current lack of urgency to correct the problems the tests are causing.
a) I need to wait a few months after taking sublingual subs before taking a test.
b) It is best to get active B12 tested
c) Levels below 300 pmo/l with symptoms should be treated
Sadly, I wasn't aware of A&B or of the need to fast. I took an approximate dose of 10,000 mcg of B12 about 1 1/2 weeks. The test I took was of serum B12 not active B12. The result was 318 pmo/l.
How much do you think the dosage my have skewed the result? 5% 10% 20%?
I know that when I went to take the test my mental clarity was not present. I took a companion to help me and even then I mistook the name of the mall with another one I frequent in another city. We got lost and after much frutration and asking we finally made it to the test center. I felt like an old man even though I just turned 40. I went home and took 3000 mcg of B12 and in an hour or so my fog began to lift and couple of days my clarity and my mood improved considerably.
The biggest issue is my neuropathy and nerve pain. My understanding is that B12 treatment doesn't heal the condition, but only stops its progression, which in of itself is a great thing, but I'd love it if it can also be treated. I don't know what levels my B12 would need to be at for such healing to begin.
I forgot to mention I also developed tinnitus in my late 20's and 30's, which the doctors failed to find an answer to, which has since disappeared.
Ok, so, let's assume, for a minute that it is POSSIBLY a B12 condition my options are:
a) Take the current test to the doctor and discuss with her the lab value being too low, the results being a bit skewed, etc, etc.
b) Abstain from subs, suffer for 3 months, retake the test and see where I am at
c) Forget all this, just take the subs and go back in 3 months and retake the test to see how HIGH I got my levels.
I've also been told to check out my Folic and D levels.
Too many tests and all this confusion about how RELIABLE these lab levels are even is making my head spin!
I can see you are confused, unfortunately nothing is simple with B12 def/ PA, we all are very different and react differently to every thing. No way can I give you any guarantees. But there can be a window of repair, you will only know once you have been declared B12 def at tissue level by taking the active B12 test (and MMA if required). If all is fine then your problem is something ells. The Active B12 with MMA if needed will show up a functional B12 def. It is the most reliable test at this time. Read up a bit, see:
The problem with abstaining is that you could leave yourself with permanent neurological damage. IF you are b12 deficient then all the time you are deficient and have neurological symptoms, that nerve damage is getting worse. Initially nerve damage can result from a build up of fatty acids around nerves, then the myelin sheath gets eroded, then the nerve dies. Once that nerve is dead there is no repairing it.
The problem with this illness is that it is progressive. And some people get it picked up relatively early and others are allowed to deteriorate substantially and suffer permanent nerve damage.
And we all view the world through our own experiences of it. So you might be talking to someone who never got severe neurological injury but who had psychiatric symptoms or whose illness was picked up at the start of demylination and the b12 treatment repaired it. Their experiences would prove that b12 deficiency damage was reversible. Yet someone who ended up with dead nerves and parasthesia or paralysis would not, of course, get the same result from treatment.
You're caught between a rock and a hard place - a judgement call that many of us have to make. Do you take treatment and try and stop the illness progression or do you wait, take your chances and try and prove to the medical profession you need treatment?
I'm angry - but only because people like you (and me) should never have to make this choice.
Serum B12 is, unfortunately, not the most reliable test in the world. Active B12 is a better guide as it looks at the active form of B12 that your body uses. The levels set for the Serum B12 test are quite wide and cover a huge area where people do experience symptoms.
Guidelines are currently moving towards treatment on the basis of symptoms rather than test results.
Getting supplementary B12 out of your system is probably the only way to ensure that readings are reasonably accurate. This can take 3-6 months.
There are different reasons why you can be B12 deficient. Pernicious Anaemia (an autoimmune response that has killed off the mechanism that allows you to absorb B12 in your diet) is one cause. Lack of B12 in your diet is another - you say you are vegetarian - B12 is found in dairy products - so if you aren't having dairy products then this could be a factor. Other possibilities are changes in acidity levels in the gut which also affect B12 absorption. This problem gets worse as you get older and the CDC website area for B12 starts of with the banner headline that1 in 31 people over the age of 51 will have a B12 deficiency. Other causes include various drugs.
Being deficient in B9 can increase problems.
So, a complicated business and for this reason, and the fact that many of the symptoms of B12 are also symptoms of other diseases it is important to get other things ruled out as well.
Going cold turkey on supplements for a while is probably the only way to get a real diagnosis and track down the exact cause(s) of the problem and this can help with sorting out the best way of dealing with it.
Having said that though I totally understand where you are coming from with the neuro problems and there are many who would rather treat the problem than go cold-turkey and get a formal diagnosis of cause (myself included).
It doesn't help that many medics have very little knowledge of B12 deficiency - particularly when you consider the prevalence of the condition ... and what they do know is often out of date and sometimes based on mis-conceptions. Patients who don't respond per the guidelines are often treated with anti-depressants rather than the B12 they need (and some anti-depressants can actually make things worse)
If the problem isn't diet then you have an absorption problem and need to get the B12 into your system in another way, eg through membranes in mouth (sublingual), nose (nasal sprays), skin patches but the most efficient is probably injections. If you are in the UK you can only get injections on prescription.
I don't know what form of B12 you were taking sublingually but in general B12 is not something you can overdose on because it is water-based. In the UK the form generally used is hydroxocobalamin and that is used in very high doses to treat cyanide poisoning.
Hi ezedek,
If I were you, forget the testing and start self injecting hydroxocobalamin or methylcobalamin NOW.
Everyday is precious, I was where you were, desperate for help, just a few weeks ago.
My GP ignored the active B12 test results, that I had paid to have done, that clearly showed active B12 deficiency in the grey area,and accepted the consultants opinion that I was not deficient because my MMA hadn't raised.
The MMA is an unreliable marker of B12 deficiency.
Go on your symptoms, stop hunting for more evidence, if you are wrong and the B12 hasn't helped,at least you started to take action in case it is , rather than wait and let matters get worse,to find out later that you have B12 deficiency,and you could have started treatment much much sooner.
I have the tingling, tremors,muscle twitching around the eyes, one of my eyes has blurred, twitching on my face hands feet, legs, extreme tiredness,and many more.
Don't become despondent,but get moving, and self inject,forget the test, you have all the symptoms of B12 deficiency, don't delay.........
While you are waiting for your hydroxocobalamin to arrive, buy the methylcobalamin under the tongue spray.
I found it far more effective than the tablets, this goes straight into the system, the tablets for me didn't work as well.
I found the spray dampened all the symptoms down, but it will not fix the deficiency.
The damage will go on, until you get the B12 injections into you.
I know how you feel, it is scary having these symptoms, but they are there for a reason..
Hi ! How much time it will take to improve neurologic sintomas ! Like dizzines fatigue ,tireles , mood back pain etc ! And how to treat it ! Iam self injection By hidroxi 2 weekly ! L feel better but with little problem en balance And back pain ! Today its my first 6 weeks of traetment , please help
I have injected mainly Methylcobalamin for the last 6 weeks, I inject 1000mg 1ml half in the am and half pm. I feel it better for me to split my dosage.I tried to go every alternate day, but couldn't.
I have self injected daily for the last 6 weeks.
I don't take anything else, except my injections of Methylcobalamin, but I do now take Hydroxocobalamin (only twice a week )
I take no sublinguals, as I wanted to know how my injections were reacting with my symptoms.
I noticed within a few days, my energy, mood, dizziness and fatigue, had gone, it took a few weeks longer, for other symptoms to disappear.
My hands are still numb and tingling, but feet improving daily,the shooting pains in my back,have gone, but I do still have some back ache, but this will also go.
But you will heal,and symptoms will appear to get worse at first,but this is your body healing itself.
You should be taking a B Complex that has a good supply of folic acid.
Folic acid helps the absorption of B12,and you need all the other B vitamins as well.
I take Vitamin C and also Vitamin D.
You need to keep your body well provided with these nutrients.
If things are not improving for you, then try daily injections if you can, keep a daily record of your symptoms, and dosage taken.
Be patient, and rest your body after injections, and don't stress, eat well, and let the B12 do the healing.
Yes, I got the blurry eyes and twitching of the muscles around the eyes on/off, at one time when the symptoms where at their worst it felt like my eye ball itself was shaking, so I get where you are at. I've been dealing with this now for 2 years and all I've been give is basically Lyrica to stop the sensation of nerve paid.
You said while waiting for my hydroxocobalamin to arrive. Do you buy this stuff and have it shipped? I thought only the doctor can inject you with it.
My neck used to twitch like my eyelids. I had the same as you with the eyeballs feeling as if they're shaking.
I decided to take matters into my own hands and started taking massive doses of B12 sublingual. I'm in the states and you can't get the hydroxocobalamin injection here to use on your own.
I started with 10,000 mcg and increased my dose to 30,000 mcg. I made sure I took the other vitamins needed so that I wouldn't get deficient in them. I took 30,000 until I started to have the zits on my face and then I backed down to 20,000. And now I found my ideal dose around 18,000 mcg. Anything over 20,000 and I break out on my face.
I started taking the B12 every 4 hours and now I'm taking it every 5 hours while awake.
Of course you'll need to find your own dose because everyone is different.
I no longer have neck twitching, eyelid and eyeball twitching, sores on the corners of my mouth, a sore and red tongue, odd twitchings in my legs and arms, shock-like sensations in my arms, bleeding gums, and dysfunctional uterine bleeding. Still improving are the odd twitches in my feet. I don't think my left leg will ever be normal. The problems with it started years ago. But... who knows.
I now exercise and haven't been able to do that in months. I can edit the book I'm writing. I haven't been able to even think straight enough to edit anything for months.
Before I started the B12 supplements I couldn't walk on level ground without losing my balance. I was dizzy all the time and would crash at 3 pm every day. I'd have these weird episodes of sound sleep where even my dog couldn't rouse me. It's a giant breed and he'd nudge me and I wouldn't awaken. I'd liken those deep sleeps to almost a coma state. I woke up and then couldn't stand up without swaying back and forth. These odd naps no longer plague me. For that I'm thankful.
The best Methy B12 I found is Webber Naturals 5000 mcg. I tried many other brands before settling on this one.
Ezedek
Ask the forum for help of where to obtain Hydroxocobalamin and the needles.
I started taking the spray about 3 months ago,I noticed the symptoms getting worse and my needing to take more of the spray.
I had been to see 2 GPs at my medical centre, all unwilling to actually help me with my symptoms, I did say to them,that they leave me no choice, but to self medicate.
Don't forget, these GPs had my active B12 test, that showed I was deficient, and in the grey area, with
all the B12 deficiency symptoms, but they did absolutely nothing.
I had intended to do another test which required me to stop B12 supplements for 48 hours.
After being on the methylcobalamin ( spray ) for 3 months and my symptoms dampened down,
{but damage still going on}, I only got as far as 24hours.
I was so shocked at how badly deficient I had become, I felt like I was sitting on top of an electric pylon.
The sublinguals had been working, but they had also hidden the progression of the deficiency, so I was very scared at my body's reaction at stopping the Methylcobalamin.
I started the spray again, could,nt be bothered about the test, I knew then, by what happened, that I had B12 deficiency.
This was a medical experiment of sorts on myself, and it proved to me, that I had B12 deficiency.
The symptoms died down again after commencing the spray, and I knew then for sure, how much I needed the B12 injections.
My serum B12 was 516,I have since found out that, having the cyanocobalamin in my B12 supplements
which I was taking when I had the serum B12 test, would stay in my system a lot longer, so that is why I had
a raised serum B12level.
You are a vegetarian, { I am as well } you can later investigate why you went B12 deficient.
The injections, will relieve the deficiency symptoms you have, and then you will have your answer, as I did.
News update:
My GPs have decided to allow me to have Hydroxocobalamin injections, for a trial of 4 months.
I need these for life, and I don't want to be at their mercy, ever again, so I will continue to self medicate.
If you want to do the active B12 test then, you will have to persevere with these symptoms, for 3 months,
and all the time, your body is getting more damaged.
I stopped my B12 supplements only 6 weeks prior to my Active B12 test, a male GP at my practice, said that is all the time needed,how wrong was he!!!!
Do more research on the symptoms of B12 deficiency, and make an informed decision after that.
Thanks guys. The more I hear about your experiences the more I see things that happened to me in the past that I had put on /ignore over the years. It is now clear that all of it was connected to B12 problems, including the sudden collapse at 2-3:00 PM. Due to afternoon fatigue, I wasn't doing well at university, and my grades were suffering. I dropped out, changed majors, and did my degree by correspondence, so I can have a shot at a Master's program. I ended up with a paid scholarship of over 10k into a one of a kind Master's program and then dropped out at Thesis stage, because of fatigue problems. I am a writer and it wasn't going to go anywhere with me staring at the screen for hours nodding off no matter how much I slept. I was in my early 30's then.
Ok, so, let's discuss routine. I am putting under my mouth sup tablets 4-5 a day (4000-5000). I am afraid I can't hold unto them for more than a few minutes before they are gone. I can't do the whole 30-45 minutes thing with these. I am reading above of tablets up to 30,000. My question here is why? Isn't the body going to piss out anything more than it can use anyway? I am thinking with the tablets at 1% absorption rate that is like 40-50mcg.
How much is in the injections? Do the injection make THAT much of a difference? I read that they work the same and that the supp are actually safer and cheaper. Hearing some of you here I am hearing that injections are better.
Even if I can't treat neuropathy totally, I'd appreciate being able to at least 'halt' the worsening of the condition. I am also seeing a difference in my focus, mental clarity, and so on already, and this is just awesome!
You absorb about 54% percent of each tablet. The tablet I take, Webber Natural, dissolves within two minutes, if that. It's the fastest dissolving tablet I've taken. It says to dissolve in mouth and swallow. Seriously, what am I supposed to swallow? Nothing left. Under tongue and presto gone.
Some people take up to 60,000 or more mcgs in tablet form. Considering you absorb a little over half, that means you're getting less than 40,000 mcg of the 60,000 mcgs.
Your body absorbs more of any injection because it bypasses your digestive tract.
There's website called Patients Like Me where one can read other people's experiences with certain drugs. Hydroxocobalamin is rated on there.
I wonder why neither of you on a vegetarian diet used nutritional yeast. It's full of Vitamin B12. When I was a lacto-ovo-vegetarian I used nutritional yeast all the time. I never had a problem with a B12 deficiency. I never even thought about it.
Injections are far cheaper, 1000mcg 50 cents to last you 2 weeks or longer. Besides the fact its pure B12. Lozenges etc there is no control of what is actually in there. to see more abou t B12 injections have a look at this patient info leaflet:
Lionyx2006: I didn't use nutritional yeast because I am unfamiliar with it really and to be honest my partner was the one in charge of the food in the house. When it came to eating vegetarian I just ate veggie dogs, burgers, or cooked me 3 eggs once or twice a week and that was that. Honestly, I spent hundreds of dollars on supp, B12 just wasn't that high on my brain, because I ate eggs couple of times a week. I didn't realize that an egg was only 5% of your daily intake of B12. I was misinformed and didn't go about being a vegetarian the right way. I went from eating junk food with meat to eating vegetarian junk food - my bad.
So, I have some mixed news to report, I sort went throught a whole bottle of 45 B12 1000mcg since my first posting here 16 days ago. This is an average of 3000 mcg a day. My starting number was 318 pmo/l, which was skewed by earlier supplementation, but let's roll with it. 16 days later I noticed the first good news. I am used to taking my Lyrica at 4:00 PM. By 2:00 PM I feel nerve pain and tingling coming up. I am in trouble by 6:00 PM and MUST have my medicine.
Two days ago, I forgot to take my medicine till 8:30 PM, because I was pain free, but I took it anyway. The next day is the same, but I began to get symptoms around 8:00 PM, so I took the medicine.
I ran out! Today I am without B12... It is 4:00 PM and I am starting to get early symptoms...
What do you guys make out of this? Was my lack of pain placebo effect? Do I run out and get more B12? Shouldn't the body have reserve built up already?
I would get more of the B12 that helped you, lets face it, its a lot better for you than the Lyrica , so if harmless B12 helps you (and there is research that implies B12 helps with pain) then get it and use it. It can do no harm. Normally your body will take up only the B12 it needs, you may have a fault in the recycling and storage of B12 that may be the reason why daily supplements work for you. Marre.
Have you had your folate and ferritin levels checked? B12 uses folate to become active. A serum b12 blood test measures active and non active b12. It takes 4 months free of supements to get an accurate test result, the active b12 test measures the active b12. B12 needs to be active to enter the body's cells. Folate should be at the high end of the lab range for a good active b12 conversion. B12 is stored in the liver. When diagnosed as deficient, loading doses on alternative days are injected then every 2 or 3 months. Your stores of b12 is Mayr low which would explain why you need it every day. Hope this helps you to understand
There is so much to comment on on this thread it could make you dizzy.
Vegetarians.
Firstly just because you are a vegetarian does NOT mean you cannot be suffering from a malabsorption problem.
The presumption, unfortunately, is that all vegetarians have a b12 deficiency because of dietary restrictions. If you have a malabsorption problem as well then you have to take medications to overcome that.
Secondly we have the problem that some people do not respond to oral b12. I believe this has something to do with the concentration gradient of cells relative to b12. Don't ask me - I'm not a scientist - the bottom line is that this is the least effective method of trying to get b12 into you if you have a problem. If you inject you don't have to worry about all of that as it goes directly into your blood stream.
However I hear that the nasal sprays are more effective at treating the symptoms but I have no personal experience of this so can't comment.
Thirdly - B12 deficiency as an illness is progressive. The symptoms get worse the longer they are left. Some people get the illness identified and treated when they have fatigue, others get to the stage where they are bed-bound and double incontinent before it is identified. There are generally considered to be 5 stages. The first 3 stages are, generally speaking, considered to be reversible. The final two mean that even if you get the correct treatment all your symptoms will quite possibly not be reversible.
You cannot even begin to assess what will reverse permanently until you have been taking the correct medication for a year.
So, by not getting the correct treatment, depending on how far you have already come means you are risking permanent neurological damage. No one, over the internet, can establish which stage you are at.
I will state here that actually it should be your doctors who are assessing your individual situation but in the UK they manage to ignore most of the injuries that people are suffering from, presumably not only because their training is poor, but because they are a bunch of blind fools.
The problem with self medicating is that it will, as you are aware, affect test results. This ends up in a situation where you can't convince doctors that you are actually ill. A catch 22 situation. And, if you get NHS treatment the best you are likely to get is an injection every 2 months. Which is ridiculous and cruel.
I'm not going to sit here telling you what to take and how and when, I just want to make some things a little clearer in your mind so you can make an informed decision.
Thank you all for the feedback. Well my previous live-in-partner has developed all my health symptoms upon returning and has began immediately getting injections and within 2 months most of them have begun to go down. It appears even her heart problems were affected by it. She had heart rate of 43-50 and was even dropping to 37. We were talking about getting her a pacemaker. Since the injections her heart rate is now up to 66!
She was, however, a severe case with lab results really low even by US/UK standards. However, since I took massive amount of subs before 1 1/2 weeks before taking my lab work I can't be sure what my results are, so I can only go by my 'gray area' normal range. Though the more I look at my diet over the last 14 years and the more I look at my symptoms the more I am 200% convinced that I did NOT get my daily needs of B12.
I've done another 1 1/2 weeks of oral subs since my last post (5000 a day). Much improvements then a day or two of downhill hell then back to improvement. Is that normal?
No injections yet as those need doctors authorization. Overall, I've gotten more relief pain wise, and was even able to fire the 'caretaker' and go back to cooking for myself! I am still too scared to stop my lyrica cold turkey even though the side effects aren't nice.
I haven't tested my folate or done any more advanced B12 testing yet. I'll check with the hospital here in the Philippines. I'd hate to have the fight the doctors in Canada. The socialized medicine there is worse than the UK (sigh) when it comes to patient-doctor relations.
I would like to update all those who have replied to my posts. I've since downgraded my dosage of Lyrica from 150mg to 75mg daily without noticeable changes in symptoms. I don't know if the day will come when I can wean myself out of it completely, but it looks like it is decreasing a lot or even going away. I will see in 6 months where my neuropathy is at.
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