I'm 28 years old male and I'm going through a horror story. 5 months ago out of the blue I became dizzy with head pressure. All tests,etc... came back normal and the doctors suggested "anxiety". After reading through thousands of posts I learned about b12 and insisted on a b12 blood test. It came back at 153pg/ml, the internist said "perfectly fine", but in the end I finally got a neuro to tell me it was not and that I should start supplementing. He told me to take 400mcg folic acid plus 2 mcg Cianocobalamin, then check my levels again afterwards. He didn't seem to be too interested and even with this brainfog I'm suffering (I'm totally done) I could see that it doesn't make too much sense. In addition I had an adverse reaction with my propioception when taking b1/b6/b12 (250,250,500) for three days so I'm totally scared to take anything, specially after reading horrorstories about folate.
I guess I'm just looking for some support, some story where this dizziness was because of b12(no vertigo, but like heavyheaded spaced out wierd balance and vision no concentration), and some advice about what steps to take, or just anything
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nikkor
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400mcg of folic acid shouldn't be a problem and is a precaution to make sure you have enough B9 to process and use the B12.
If you have one of the MTHFR genes then it could be a problem but don't think that would necessarily be the case at that dosage. MTHFR interferes with ability to methylate vitamins - including B9 and B12 - turning them into the forms that are used at the cell level - and some variances mean that methylated forms of the vitamins can cause adverse reactions but folic acid isn't a methylated form.
Research on the risks of folic acid isn't entirely clear but there are probably some risks associated with epilepsy sufferers
This links to the EU recommendations on upper daily limits for various minerals and vitamins and gives details of why the the recommendations have been made - including potential side effects.
Are you being given oral B12 on the assumption that the deficiency was down to a lack of B12 in your diet, ie you don't eat much meat or fish.
1% of B12 is absorbed outside the ileum so very high doses orally can be effective for some people but there is no guarantee.
If the B12 has raised your B12 levels then it is possible that you could be suffering because of an autoimmune response to high levels of B12 in serum that tries to shut down transportation to the cell level (TCII). One study implied that this may affect something like 30% of the population. This will mean that you have high levels of b12 in your blood but very little or none is getting through to cells - leaving you deficient at the cell level (functional deficiency).
The only recommendation for treatment if this is the case is to go for even higher levels of B12 - which certainly seems to work for me.
People also vary very much in which forms of B12 they respond to and it is possible that cyanocobalamin isn't the right format for you so you are still deficient.
Not sure where you are based - CDC in the US (one cyanocobalamin country) recommend nasal spray as an alternative to injections where there is an absorption problem.
So,
a) establish why you have been given tablets - is it diet? or ...
b) look at other ways of supplementing
c) look at different formats of B12
d) make sure that they do monitor your B12 levels post supplementation to see if any change has taken place - if not then obviously oral isn't the right way for you and you need to look at something else.
If oral has worked then look into functional B12 deficiency.
I didn't start to get better until I started taking around 4mg of B12 a day.
I'm not a veggie or anything, I'm just low on B12 for some reason.
The neurologist told me to take the pills to see if I start elevating my leves but since he only prescribed me 2mcg I don't see how this would be anything different as the food I eat regulary. I will ask my GP tomorrow, but I think she is kind of clueless.
You can't overdose on B12 so you could try taking the whole bottle in one go ... but that doesn't get you through tomorrow or the day after.
The amount you are being given is a little over RDA so in theory it would boost your levels if you don't have an absorption problem but it would take forever to get you to where you need to be .... like telling you to fill a bath with a teaspoon.
Really sorry that you are surrounded by people who just seem to have anything approaching common sense extracted ... is this part of the graduation ceremony at medical college.
You could probably get higher doses over the counter without a prescription if you want to try that.
Have hope! Are you having any other symptoms of B12 deficincy? The PAS website has a good checklist.
Dizziness, confusion, brain fog, balance probs, were all symptoms of low B12 for me. I had many other symptoms too. I have made a great deal of progress very recently.
Did the doctor check you for anemia? With B12 that low you are at risk for anemia, and of course that can be one cause of fatigue and dizziness.
Did they rule out non-B12 reasons for your symptoms?
Did the neurologist think you are having neurological signs of B12 deficiency? That is a real concern and hopefully something a neurologist should answer.
It's weird that a neurologist gave you primarily folic acid for a B12 deficiency. Did he say why? Did he test your folate level? And did he say why such a low dose of B12? Folate can mask the blood abnormalities of b12 deficiency anemia, and allow deficiency to progress. Folate can't take the place of B12 and correct a deficiency.
So if you haven't taken the folate and haven't gotten tested for megaloblastic anemia, get tested first. Folate might skew the results.
There are folate horror stories (mine included), but that doesn't mean folate is bad all the time. The key is to take it if you are deficient and need it. If you don't need it, or take too much, or take it and leave B12 def unadressed, it can cause problems. That's when you get the horror stories.
B6 is something to be cautious with. Supplementing too much B6 in particular can actually cause nerve damage. In my opinion it needs to be supervised, and don't take it if you don't need it. I'd bear in mind that the safe upper limit is a general limit. If you have problems at a lower dose, your safe limit is lower.
I hope this makes sense. I would say:
-Get tested for megaloblastic anemia due to B12 def,or find out if the test has been done
-Know that if you take folic acid before testing for anemia, it could skew results
-Clarify with neuro whether or not you have neurological involvement with B12 def
-Ask about cause of low B12
-look into sources in case you want to supplement on your own
- get a B vitamin panel to test for other B vit deficiencies, just in case
Don't worry about the horror stories! You're forewarned, and you can go slowly with doses. There's nothing wrong with taking a fraction of a dose and working up. Some people like high doses, but plenty do well on moderate doses. Once you find what you need, I bet you'll respond quickly. Best of luck.
Just a quick addition to all the excellent advice and experience given here. Initial testing for megaloblastic anemia is done simply via blood tests. Should include at minimum a complete blood count with differential (CBC), red blood cell count (RBC) Reticulocytes (to see if RBCs being produced) and a peripheral smear. The latter is achieved by smearing thin coatimg of blood on a microscope slide and checking types of cells present. (In Britain it may be referred to as a "film.)
Your GP may have checked your CBC just to see if you were anemic but normal results there do not rule out B12 deficiency.
I did. Also a weakness like I couldn't keep myself upright, and loss balance because I couldn't sense my feet or body, so I would knock into things and weave.
Presumably you have also had your ears checked out, as ear infections or other conditions can cause these symptoms too, as can migraine. Even coeliac disease or non-coeliac gluten sensitivity can cause similar symptoms. If you had an undiagnosed problem with gluten, you would have an absorption problem, which could lead to all kinds of deficiencies including B12, and to neuro symptoms.
I had several years of what you describe on top of other symptoms, but it wasn't taken seriously and was put down to worsening/changing migraine and/or "stress". However migraine is a neurological disorder: so chicken and egg.
Good advice from the others on testing and treatment. I hope you are able to get a trial of B12 injections or find a better source of supplements, and that they help. There's a huge amount of info and details of people's experiences on this forum.
Your description of dizzyness without the vertigo component exactly describes one of my symptoms.I refer to it as lightheadeness or giddyness.
First of all have you had tests to see if your low B12 is due to Pernicious Anaemia ?
Your Doctor should have tested to see if you have antibodies to Intrinsic Factor and/or Gastric Parietal Cells.
Insist on these tests , if you have PA only injections will get B12 back into your system.
Here's my experience.
September 2014, I had bouts of nausea , indigestion, irritable bowel weight loss and brain fog for about 2 months or so before I decided to see Doctor.HE sent me for an ultrasound which showed Gallbladder polyps,the polyps were a Red Herring, but did cause me to be sent to see a Gastro specialist.During the 3 week wait to see the Gastro my brainfog worsened into migraines and "lightheadedness" but NOT Vertigo and numbness and tingling in my right hand and elbow.
The Gastro booked me in for a Gastroscopy including a biopsy to test for Celiac disease , he also sent my for a CT scan of the brain to check the hand numbness .
The CT scan of the brain came back clear.
The gatsroscopy showed some inflamation of the duodenum and the biopsy was neagtive for Celiac disease. So I still had no answers to explain my symptoms.
This took me to the begginning of December 2004. A blood test showed I had high ferritin levels so a visit to a Haematoligist occurred in early January who took some blood and told me to come back at the end of March 2015.
In February after weeks of getting very fatigued , particularly in the legs, with only minor exertion
along with heart palpitaions and minor chest pain I went back to the GP . He sent me to see a Cardiologist who gave me a stress test echo and a halter monitor exam.These tests showed no heart issues but the fatigue worsened along with the 'Lightheadedness ' which was by now constant and made concentration quite difficult.
Finally in March the GP gave me a blood test which showed low B12 ,along with antibodies to Intrinsic Factor but no antibodies the Gastric Parietal Cells . That is I had Pernicious Anaemia.
I thought this could explain all my symptoms.
The GP said I was his first PA patient in 17 years of practice and he gave me one B12 injection and said that I could discuss what to do next with the Haematologist specialist who I was to see the next week for my follow up appointment after the first visit in January.
However by this time my tingling and numbness had spread throughout my entire right arm from the shoulder down and I was just beginning to fell tinglng in my left arm.Also my toes on both feet were going numb and I was feeling weakness in both knees.I had lost15 kilos in the previous12 months.
Concerned with this the GP set up a meeting with a Neuro specialist which would occur in the first week of April.
So on the last Friday of March 2015 I saw the Haematologist , who was a full Professor at one of Australia's largest teaching hospitals .He had the results from the blood he took in January ,three months earlier.
He said that even though my B12 levels were low that my "Available" B12 was high enough and so didnt explain despite the PA diagnosis the numbness , lightheadedness or other symptoms.
So I spent the next month having MRI scans to rule out MS and nerve conduction and emg studies to eliminate motor neurone disease.
It was just after the Haematologist appointment in late March that I discovered this site.I insisted on more B12 shots from my GP and forced a compromise of 1 shot a week for 10 weeks.My symptoms improved quite quickly.I have been self injecting shots since July.(B12 ampouls can be bought over the counter in Australia)
My hand and feet numbness and tingling improved very quickly and are now close to 100% normal.
The palpitations stopped after about a month and have not returned.
The gut issues have improved but only marginally.I believe that each time I eat I trigger an Intrinsic Factor antibody related inflamatory event in my guts so I don't think it will ever improve to normal.
I have stopped losing weight and put some back on.
The "lightheadedness" was the most stubborn symptom for me. It only started to improve about 2 months after my first injection and although it did go away totally I still suffer from the occassional bouts of it that can last for a day or two.Fortunately these occasional bouts which can last for a day or so are of MUCH lower intensity than the 'Lightheadedness" I was having when it was at its worst.
So I believe the Haematologist Professor was simply wrong.
I believe the PA caused the neuro symptoms including the "Lightheadedness".
So Nikkor , I hope my experience helps you in some way.
You MUST get tested for antibodies to:
1.Intrinsic Factor
2.Gastric Parietal Cells
Your Description of your "non Vertigo" dizzyness sounds identical to mine.
After B12 shots my "lightheadedness" persisted after my other symptoms improved and I believed I would be 'stuck ' with it .But after a few months it slowly got reduced in intensity and then disappeared for whole days and then weeks.I do however still get some bouts of it occassionally that can last for a day or so but at a very low intensity.
My neurologist says he doesn't believe the "Lightheadedness"is caused by my PA .
Well that's it , if you've raed this entire rambling tome I hope I haven't caused you a headache.
Hope you have continued to improve. Without going into detail of pain and weakness related symptoms, if I describe how I feel, I wonder if you will be able to relate to it?
I suddenly become nervous and can feel a fluttering chest. The feeling is particularly bad when I go shopping in a supermarket for example. Looking through aisles moving my head gives me a strange feeling. I kind of feel lost and unable to concentrate. I try to ignore my shopping list or offers. I used to be a very good grocery shopper. now I feel nervous for no apparent reason. My head feels, I don't if I should say empty. I am not dizzy but not confident in my movements. I am unable to smile to people.
My thyroid is fine. I had a vit D deficiency one year ago but not anymore. I had b12 deficiency (137) in March 2016. This was tested when I had sharp pains in my hands, feet and legs and arms. I had 6x hydroxocobalamin injections. Then 1 in June and 1 in September 2016.
This nervousness, anxiety and kind of unsteadiness (I m not falling or off balance- at least not yet) comes anytime, not necessarily when I m out and about. Even at home suddenly.
My IF and Gpc antibodies were negative. I thought may be I have topped up my b12 so things should be fine but apparently not. My neurologist checked my ck and another blood test to see if I have muscle disease but they are fine. Emg and NCV are fine too. I am also due to have a brain MRI as my Xmas present. Lol.
My blood count is fine. Just slightly low hb. Usually around 11-12.
All other things fine. Kidney, liver, heart, calcium level, bone profile. I don't what is missing in me. I m going to see a haematologist soon.
Your story seems familiar to me Did your brainfog left? I was pretty "inteligent" before this, now I even lost my orientation sense.
At one point I had the tingling all over my extremeties and some spots on my face, it started in my left foot years ago, and now it only remains there and it's not all the time.
I was at the GP today, she had some medschool kid with her. She wants me on sertraline, I didn't even try to explain her that ADs don't work with low B12, a B12 that according to her is not low because the lab says the acceptable range is 110-300 and I have 153 pg/ml, and that I should take the ADs before she sends me to the gastroenterologists.
I guess I will look for some Private doctor, I could also order the tests by myself, anybody wants some camera equipment?
Your instinct about brain fog, loss of intelligence and orientation is right on. Don't let anyone dismiss it. At my worst I couldn't spell, couldn't add or subtract, couldn't feel the passage of time or remember anything that had happened in the past few days. This is improving.
I have long experience with ADs. You're right to contest it. They have massive side effects with little gain and mess up digestion- bad for someone deficient and at risk for malabsorption. SSRIs can adversely affect mood and cognitive function- what an extra burden to someone dealing with B12 deficiency! Plus SSRIs cause dependency. It took me YEARS to wean off, and I had terrible withdrawal. When SSRIs are presented as a short term option I just shake my head.
It's looks like you've got the right idea and I'm really hopeful you can improve.
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Did your brainfog left? I was pretty "inteligent" before this, now I even lost my orientation sense.
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