I am new to this site. I need help. For the last ten years I have been living in anxiety hell. Not once did a doctor think for me to take a B12 test. My mom who has been through this whole thing with me watched an episode of Doctor Oz, told me I had all the symptoms of a B12 deficiency, and signed me up for 6 B12 injections via a livingsocial deal. That was 7 weeks ago. 5 days after my first shot I felt GREAT. 90% of my anxiety was gone. I was active and not stuck in that dark place I like to call the rabbit hole. 1 week after I got the shot I had my GP run my blood for B12 levels. It came back at 500. He said I didn't have a deficiency although I did tell him that I had only had the injection 6 days before. Since I felt good I ignored his diagnosis and kept repeating the shots. I have had 6 shots in 7 weeks and now I am feeling horrible again. The horrible feeling started before my last injection. Foggy brain, anxiety, depression, lightheadedness, loss of appetite... Yesterday (this is a week later now) I started to feel better after dinner. I had steak and asparagus. When I looked up foods high in folic acid it listed asparagus as one. But this morning I feel aweful again. It has been 8 days since my last B12 injection and I haven't sublimented those with folic acid, or folate, or folinic acid. Is this why I feel bad? Also I don't know which form to take. My P anemia results came back fine. Should I add iron? I bought the under the tongue B12 and plan on taking it with methyl folate. Someone who knows about this please help. My doctors do get it and I don't want to go back down the rabbit hole again.
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cshelly747
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Hi cshelly747 you don't sound as if you are in the UK but you may be right about Folate.
There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.
Folic acid is crucial for proper brain functioning and plays an important role in mental and emotional health and works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.
Rich sources of folate include spinach, dark leafy greens, asparagus, turnip, beets, and mustard greens, Brussels sprouts, soybeans, beef liver, brewer's yeast, root vegetables, whole grains, wheat germ, bulgur wheat, kidney beans, white beans, salmon, orange juice, avocado, and milk.
B9 (Folic acid) University of Maryland Medical Centre
Thank you! I'm in the States but this is the first forum I've found that could actually answer my question. I'm going to buy some vitamins later. Iron and folic acid (because I know I felt better after asparagus). I got sublingual B12 earlier today. I guess I'll take one of each and see what happens. I'm just not sure what my levels of each are so I have to trial and error balance them unless you have other wisdom to offer?
a level of 500 just one week after a B12 shot (assuming it was 1000mcg - is actually quite low. - means that you are removing the B12 rapidly from your system - the rate at which it goes is dependent on how high the levels in your blood are - so quite possible that if the test had been done a week later you could have been back to deficient again.
IFA test is prone to false negatives 40--60% of the time depending on what assay method is used so a negative result is a long way from ruling out PA as the cause. It looks from some recent research as if measuring gastrin levels may provide a better way of identifying PA as the cause.
That's what I thought! Now I'm having issues with my doctor. I asked for a MYHFR gene mutation test and he said he'd rather do a homocysteine test. I asked if getting a B12 shot a week ago would affect the results...no answer yet. The anemia test was done in the ER on Friday. Not sure what the standard test is there. It's really fraustrating when no one will listen to you about your body. All I know is that I had anxiety and 5 days after my B12 shot I didn't. Also I have every B12 deficiency symptom but no one seems to care I'm guessing because they've never experienced it before. Thank you for your reply!
Hi cshelly747. Hello and welcome. So sorry to hear that you've been having such a rough time.
And I'm equally sorry that so many GP's have so little understanding of B12 deficiency and it's treatment 😱.
First, about the folate...you may well be right...low,or deficiency folate can give the symptoms you describe (as can B12 deficiency/under treated B12 deficiency.
How to deal with the potential folate issue...best way is to ask your GP to test your folate levels. If deficiency, your GP should prescribe a course of 5mg folate tablets for two/three months and the re-test your folate levels.
If your folate levels are low in the reference range (but within it) your GP may think this is good enough - it's not. The body needs good levels of folate to be able to process B12 properly. If low in the reference range you could take 400mcg of folic acid daily to boost levels (some take 400mcg daily as a maintenance dose - but equally, some don't need it at all). You can by this dosage from and chemist - or Tesco.
About methyl folate - very few people need to take this (despite all the hype you may read on the Internet - usually put there by people who sell it or sell multi complex B vitamins that contain it). And some people react very badly to methyl folate. So...if you do need folate, best to try folic acid first 😀.
I agree with gambit - a B12 level of 500 one week after an injection is low - and your GP should know (but probably doesn't) that testing serum B12 levels following injections is not required, unless checking for low levels - and 500 is low following an injection - in which case, more B12 should be given. (B12 levels following injections should be high - mine run at about 2000) but the is no correlation between high levels and the presence or absence of B12 deficiency, once injections have commenced. So, 'normal' serum B12 ranges don't apply to a) those on B12 injections and b) those who have B12 deficiency (seem to need higher levels of B12 - but nobody knows why.
All the guidelines say treat the symptoms, not the B12 levels. Your self-administered B12 injections should be viewed as a successful therapeutic trial - because your symptoms improved following the injections and then returned when the injections were reduced (or stopped). Your GP would view it as such if they had a good understanding of B12 deficiency and it's treatment. (Might be a good argument to make to,your GP).
About your B12 treatment regime (this is if you are in the UK) - if you have neurological symptoms, after the loading doses, you should have B12 injections every other day until no further improvement - for some, this can take many months - then go,on to eight weekly injections (though this is not enough for some people - but that's another story). So...if,you have neurological,symptoms, it's important that you have the neurological regime of injections (as above) to prevent potentially irreversible neurological damage.
About iron supplements - best not to take iron supplements unless advised to do so by a GP. First, pernicious anaemia causes B12 deficiency, not iron deficiency (iron deficiency anaemia is a different kind of anaemia). To find out if you have iron deficiency anaemia, ask your GP to check your ferritin levels (ferritin is one of the markers for iron deficiency anaemia). If ferritin is deficient or low in the reference range, your GP can prescribe iron supplements and then re-test your ferritin levels after three months. If your GP will do a full,iron panel, that would be even better since that would give a true iron status (you can be high in ferritin but still low in iron - it's quite complicated, so that's why it's better not to take iron supplements without having blood tests first. Too much iron - called iron overload - is as bad as too little and can cause damage to the organs.
Again, I agree with Gambit - a negative IF test is no guarantee that you do not have PA. and you are more likely to have PA if a member of your family has any kind of autoimmune condition. Also - the treatment for PA is the treatment for the B12 deficiency it causes - and B12 deficiency has many causes, other than PA. so whether you have PA or not is a moot point - whatever the cause, the treatment for B12 deficiency is the same - B12 injections (unless the deficiency is dietary related - quite rare and usually only in vegans).
Unfortunately, now that you have had B12 injections, any further tests your GP may want to do or should want to do to will be skewed, perhaps for many months (up to six in some cases). And it's probably going to be quite difficult to persuade your GP that you do, indeed, have B12 deficiency - simply because GP's seem to know so little about it. Sadly.
Many people here deal with this by becoming their own experts then presenting evidence to their GP's about the diagnosis and treatment of B12 deficiency.
So...to that end (and because you're new to the site), I'm going to paste some links below that contain information about the diagnosis, treatment and management of B12 deficiency, together with links to the guidelines that your GP should be following. Also - myth busting information - since some GP's have very odd notions about all things B12.
Don't be daunted by what looks like a lot of links. Most are only one page long and the longer BCSH treatment guidelines have useful summary sections throughout. And reading this 'stuff' 🙃 will help you to understand what your GP should be doing for you.
Sorry, but I'm running out of time now so...you may have more questions when you've finished reading 😉so please post again if you do. Likewise, post again if you want more help with knowing how to approach your GP (or what arguments to make to help you get appropriate treatment).
Good luck, take care, and let us know how you get on. Here come the links:
onlinelibrary.wiley.com/doi... (British Committee for Standards in Haematology (BCSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)
bloodjournal.org/content/bl... (Haematologist B12 Treatment Review March 2017 – Includes Advice No Reason to Advise Against Self-Injection/More Frequent B12 Injections)
stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)t
P.s. Forgot to say...doctors often say blood test results are normal when they're not! People here always ask for copies of their blood test results (you are entitled to these, by law). If you want to post the results in the forum, together with the reference ranges, people here can help with interpretation 😀.
Thank you! I will look at all these sites. I really appreciate it. I wrote my doctor an email tonight asking for his help so I hope that will be enough to motivate him. While I'm thinking of it--and I've done the research--do you think it is possible for me to have too much B12 in my system. In 7 weeks I've had 6 shots and my symptoms started about an hour before my last shot. It's now been 8 days since my last shot and I don't know if I should get another or take sublingually? Or if maybe my folic acid is out of wack because I've had all B12 but no folic acid?
You cannot "overdose" on B12 as being water soluble any excess is excreted via your urine.
I am not a medically trained person but you have had excellent advice above from Gambit62 and Foggyme
There is a very good book written by two of your fellow "countrymen" called “Could it be B12? – an epidemic of misdiagnoses” by Sally M. Pacholok R.N., B.S.N. & Jeffrey J. Stuart, D.O.
Thank you! I guess I didn't mean an overdose of B12 more like too much of it and not enough of the other stuff like folic acid and maybe iron which has created a big imbalance in my system. I will download the book you recommend thank you.
Hi cshelly747. As clivealive says, you cannot overdose on B12, it's not toxic and you cannot have too much in your system.
Autoimmune reactions to B12 are very very rare and the body is. Dry responsive to things it 'doesn't like'. I suspect that if an autoimmune factions was occurring this would have happened following an injection, not just before one. And 50% of a B12 injection is excreted within 24 hours, so any B12 'spike' following a jab reduces very quickly.
You don't say what your B12 levels were before your first injection, but with a serum B12 level of 500 following one injection (which is very low), I suspect your B12 pre-I Keaton may have been very low. So, where am I going with this...
First, if you had neurological symptoms prior to any injections, then stoping injections now may lead to potentially irreversible neurological damage.
Second, if neurological symptoms were present, then sublingual tablets are not recommended for treatment - in the UK injections are the recommended treatment. Why...
If your B12 deficiency is due to an absorption problem (and unless you have been a vegan for many years, most are), then you are unlikely to absorb enough from sublingual tablets to effectively treat your B12 deficiency. Though some people do find these effective, most don't - and where neurological symptoms are present...well, why take the risk 😉. (See information in the first link I left in my reply above - speaks to the issues with taking sublingual etc. for B12 deficiency).
About the folate - if your folate was on the low side when you started the B12 injections, then it is likely to have dropped lower once your body had some B12 to process (because B12 and folate work together - and you may well have the symptoms of folate deficiency...and...
If your folate is low, then your body may be experiencing the symptoms of B12 deficiency - because even though you may have lots of B12 in your blood, it can't be processed effectively without sufficient folate. So...
The best way to know for sure is to get your folate levels tested. If these are deficient your doctor can prescribe 5mg tablets which will bring your levels up more quickly (re-test after a couple of months and then perhaps drop down to 400mcg maintenance dose if levels have come up).
About the homocysteine test - this will be raised in both folate and B12 deficiency so, if raised, it won't be possible to say whether this is due to folate deficiency or B12 deficiency ...so, won't give you a clear cut answer 😣.
An MMA test would be better for showing whether the problem is B12 deficiency or not.
However...both tests may be skewed (come back 'normal' because you have been having B12 injections and won't be able to determine whether you were originally suffering from B12 deficiency (i.e. before you had the B12 injections). But...if,you are folate deficient, the homocysteine may still be raised...but it may not be raised if your folate is low, rather than actually deficient (testing folate levels the best way to assess folate levels and get an accurate 'handle' on levels and what (if any) dose of folic acid you need.
Think I said something about iron above - not a a good idea to self supplement before ferritin and a full iron panel are done to assess true iron status (too much iron can be very bad for the body and cause long-term damage).
In short, if this was me think I'd get the folate tested before dropping the B12 injections...most certainly if there were originally neurological symptoms (check,out the symptoms list in the links above - you might find that there are neurological symtpoms that you didn't know were neurological in origin 🙃).
Good luck with whatever you decide to do...let us know how you get on 👍
Thank you everyone for your replies. It really helps knowing that I'm not alone and that people understand. I'm going to go take the homocysteine test today (it's been 9 days since my last B12 injection and I have yet to take a folic acid supplement--all my folic acid has been from food). After the test I'm going to take B12 sublingually until I feel better and a folic acid tablet with it. I'm going to start with 400mcg.
I haven't received a reply from my GP yet but if he seems to be more on board I might try to get the PA test (the one mentioned above). But then again as one of you said the point may be moot since PA and B12 deficiency have the same course of treatment. Anyway thank you all! I will let you know how it goes.
Hi agsin cshelly747 I can't see anywhere a mention of why you became B12 deficient.
On page 23 in the book I recommended “Could it be B12? – an epidemic of misdiagnoses” by Sally M. Pacholok R.N., B.S.N. & Jeffrey J. Stuart, D.O. there is a list showing:-
Who’s at greatest risk for B12 Deficiency?
Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:
Vegetarians, vegans and people eating macrobiotic diets.
People aged sixty and over
People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).
People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications that can interfere with B12 absorption.
People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.
People with a history of eating disorders (anorexia or bulimia).
People with a history of alcoholism.
People with a family history of pernicious anaemia.
People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).
People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.
People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.
Do you see yourself as any of the above "people"? It would be good to know the underlying cause of the problem.
Since my anxiety began 10 years ago I believe I have been deficient for 10+ years. I am 37 years old now. When I was in my early 20's I was a vegetarian for 5 years. Also autoimmune diseases run in the family (MS and Lupus). When I was 15 I was put on depo because I was anemic. I guess this would be the regular anemia. The reason I became vegetarian is because I would throw up if my meat wasn't well done (as in my stomach would reject the blood). I have IBS which goes hand in hand with anxiety so hard to tell if it was the chicken or the egg. I took the homocysteine test today and I pray it comes back high so I can maybe persuade my doctor into the MMA/folic acid test you mentioned, or the test someone mentioned above that starts with the F initials. After getting B12 and subsequently feeling better 5 days later I looked into B12 deficiency symptoms. I have EVERY one. I just got an EMG and I have neuropathy from my elbows down (they only tested my arms). I have low blood pressure and faint all the time...my GP before this one thought I kept passing out because I was having migraines without head pain. I have migraines all the time. I have zero memorization skills which could be from having had 2 concussions. The list goes on. But the biggest thing is that 5 days after my 1st B12 shot 90% of my anxiety went away. I was "normal" again and I felt like me for the first time in over a decade. I did not have my B12 levels tested prior to my first shot. Only 6 days after. It took time to talk my GP into it. So in my mind B12 defiency or not the B12 worked. I will continue to get in. I made an appointment for Tuesday to get another injection since sublingually doesn't seem to work/everyone above recommended the injections. But I do not feel as good as I did after/during the first 4/5 injections and I would like to know what the culprit is so I can get back to feeling like a functioning non mental member of society again. Unfortunately I need my GPs help to do that and hopefully luck will be on my side and the homocysteine test will come back high enough he "believes" me and runs more tests.
Your IBS is another "indicator" that you may be at risk of developing B12 deficiency as per the list above.
It is not uncommon for some symptoms to appear to get worse before they get better once B12 injection treatment starts. Ironically this may be taken as a good sign that the B12 is starting to repair the damage done to your nervous system caused by the deficiency. A lot will depend on the severity and longevity of the deficiency and sadly there is no guarantee that all symptoms will be completely "healed" as in my own case.
Also I don't drink but both my parents are alcoholics. My thyroid test came back normal. And yes pre B12 I was fatigued all the time but I had an over abundance of nerve energy if that makes sense. Also I don't sleep well.
Do you have the results that were *normal* for the thyroid ? Low thyroid is common with low B12 - Folate - Ferritin - VitD. Also Hashimotos is auto-immune and can be linked to gut issues.
TSH - FT4 - FT3 plus antibodies TPO & Tg should be tested for the thyroid.
My homocysteine test came back at 5.9 umL or whatever the measurement is which is on the lower side of the normal range. So I guess luck was not on my side and I will be doing no further testing. I will keep taking the B12 injections however. Thank you all for your replies.
I just got off the phone with a functional nutritionist who has agreed to take my case. She will be running a whole series of blood, urine, and genetic testing. She also said that since I was B12 depleted for so long that I might have overloaded my system which is why I feel bad again. I can't remember verbatim what she said but basically there aren't enough taxis in my system to transport which is causing me to feel bad again. I feel very good about her and I like that she isn't focused on just one system. Also she's the first doctor in 10 years who LISTENED. She didn't look at me like I have a third eye. Anyway I have my first appointment with her on Wednesday and I will keep everyone posted. Thank you everyone again! Your words/advice helped.
Hello everyone, I wanted to update everyone on my status in case anyone reads this in the future looking for information for their own story. I will be posting this under my other message as well.
I've been to see my functional nutritionist twice. ***If you are interested in seeing the woman I see please message me directly. She can conduct appointments via webcam.*** She gave me a blood/urine test that was very comprehensive and run through a company called Genova Diagnostics (NutrEval). This test took about three weeks to come back but it was very thorough. Through it, I found out that I am deficient in ALL B vitamins (except of course B12 because I was getting injections, but it was still low), vitamin D, CoQ10, Magnesium, Maganese, Potassium, Folate, zinc, and a-Lioic Acid. And when I say deficient I mean deficient. The B vitamins were so low that they worsened my peripheral neuropathy to the point that I wasn't sure when I went to bed at night that I wouldn't be paralyzed in the morning. In case you're wondering I'm not an alcoholic--I drink a beer maybe twice a year.
While I was waiting for these test results I started to get sicker and weaker. Coincidentally I had an appointment with a neurologist to read an EMG I had done on my arms where all of my nerve responses came back slow. Within 5 minutes the neurologist diagnosed me with peripheral neuropathy and scheduled me for a EMG on my legs. I get those results today but my neurologist did say that it looked like I have a combination of neuropathy; neuropthay caused by a MVA and autoimmune neuropathy. We will begin testing for those. Getting diagnosed with peripheral neuropathy and getting the NutrEval back convinced my GP that there was actually something wrong with me. He actually put B-12 deficiency as one of the reasons for further testing. We are still at the beginning stages of testing but so far I know I don't have diabetes. All of those tests came back normal but my C-Peptide came back high so I think the next step will be testing for Cushing Syndrome. During all of this my kidneys began to hurt and my creatnine clearance came back low (83.8). My bilirubin came back low as well (.02).
My muscles got really weak and it was while I was talking to my pharamcist that she asked if I ate carbs (I don't--I'm usually on a high protein low carb diet). She recommended eating carbs to see if that helped with the muscles spasms, twitching, falling asleep, numbness... I ate carbs and within a day I went from wondering if I would be paralyzed in the morning to being able to drive a car like a normal person.
So what does this mean for someone else who's going through this? I don't know. This is my experience and this is what I have learned about my body, and again this is MY body.
1. When I'm excessively thirsty it means I'm low in potassium. But I have to remember that potassium and salt work together so the best way to get these is through an electrolyte solution--not from just eating a couple of bananas.
2. When my muscles start spasming it means that I'm not absorbing electrolytes. This means that I have to add a substantial carb to every meal. For me this is not the carb found in fruits.
3. When I start having negative thoughts it means my B12 is low. And if I get an injection then I need to monitor my potassium, salt, magnesium, folate, and vitamin D intake because these numbers will drop.
So what's next for me? I'm having tests done as mentioned above. I'm also having genetic tests run. Once I find out what's causing my B12 deficiency I will let everyone know. One of you suggested that I might have more than one thing going on. I agree. We'll see.
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Checking on my understanding of Folic Acid
Low folate (again) B12 normal - challenge results
Excess Folic Acid and Vitamin B12 Deficiency: Clinical Implications?
Folate 
High B12 (>2000pg/ml) but pain returned in feet
