I tried posting this on the Vitamins and Supplements board, but I got no responses I am hoping someone here will be able to shed some light on this for me.
>>Hi, my doctor informed me that I have a major B12 deficiency, and I imediately started injections. I also have an iron deficiency.
My question has more to do with the B12 symptoms, and effects of such a deficiency. I have been experiencing symptoms that my previous doctors have put off for years now. After researching info on b12, I read that
the signs and symptoms related to the central nervous system may be irreversible if treatment is not begun within 6 months of when these symptoms begin.
Symptoms (I have all of theses and more)
Loss of appetite
Numbness and tingling of hands and feet
Shortness of breath
Sore mouth and tongue
Confusion or change in mental status in severe or advanced cases
I believe I have an advanced case. Does anyone else here have a similar experience? Or any input that may help. I don't want to be like this forever, I just want to be myself again, and reading such information is rather disheartening. I do, however, plan on regaining my "pre-sick status", as I know mental strength is just as important. <<
It has been a little over a week since diagnosis and my first shot (he has me on a 1000mg? shot once a month. I'm not sure of the labs range, but my number was at 84, and from what I've read anything 185 and under is considered deficient). I have not noticed any difference. I still feel as foggy and confused as ever. I am also taking iron tablets, 3x daily = 300 mg - when I remember. I used to be an A++ Honor Roll student, and now I cannot even read without losing the meaning and just not comprehending it at all unless I read it over and over again. I am in a constant daily fog. I have so many symptoms, and my doctor is trying to put it all in perspective for me, but I just do not know how to correlate them all. I really hope someone here has experience with this.
I was diagnosed with a b12 deficiency about ten years ago. My b12 was 206 but I felt just as you do. I started with the shots and began to feel a little better in about three months. I did not feel fully myself for a year. In retrospect I think I should have talked to my doctor about shots twice a month until I felt much better. Hang in there though, I promise you will eventually feel yourself again. About the irreversible nervous system damage I think that your B12 level falls very slowly over along time so you have probably been in a relatively safe range for quite a while.
You might need shots much more often than that to start with. They can space them out once they get your b12 built up. Also it is very important to have an intracellular magnesium test (INTRACELLULAR) not just serum. If you intracellular magnesium is not correct, it will be very hard to maintain your B12. They are all interconnected in a long chemical process within the body. Don't give up. It will take a while. You can always recover..maybe not to the point of a long time ago..but certainly where you will have the preception that you have recovered. Look up the symptoms of low magnesium. Also try symptoms of low nutrients in the body. Make sure you doctor isn't over dosing you on calcium... (there is such a thing) if you are not taking the right ratio of magnesium and Vit d
olderlady - thank you. I have been experiencing these symptoms for over two years now. So, I am definitely past the 6 month mark. I will wait it out though, and hopefully start feeling better soon.
finres - I have not been tested for any other deficiencies as this is all really new to me. I was not really expecting the tests to show any deficiencies. My doctor's reasoning is that I have a malabsorption issue, and this is causing the deficiencies (B12 and iron so far). I will mention the magnesium test to the doc, and I am not taking any calcium.
I will ask the doctor about more frequent shots as well, to get my number up. He did mention doing more testing in a few weeks to see where the current supplementation brings me up to, and tweek it from there.
Again, thank you both
My main concern is the nervous system damage that this can cause, and the fact that it can be irreversible/permanent. I have been to my doctor numerous times complaining of symptoms, and I kept getting put off. He sent me to numerous different specialists, who also shrugged me off. It was only when I sought out a new doctor that I am finally getting somewhere.
After researching magnesium, it is quite possible that I suffer a magnesium deficiency as well. Although some of the symptoms overlap with those of the B12 deficiency, others would most definitely make me think that I have this. It would explain alot of things that my optologist(sp?) and ENT cannot figure out. I will ask my doc to test this.
I'm sure glad to do anything I can do to help. When I first found out what was wrong it was a relief and it was scary at the same time. The first doctor I went to told me that there was nothing wrong with me physically that it was all mental. Why is it that when doctors don't know what's wrong with women in particular they say the women is nuts? Don't hesitate to ask me any questions you want to. I felt that the confusion and inabilty to think was the scariest part.
OlderLady - Did you experience any other symptoms? Besides confusion, frustration, inability to think? I know those are the most prevalent, and are currently a major problem for me, its really interfering with my work and my relationship
But did you experience any mood swings? The littlest things have sent me in crying spells and sometimes into outbursts of sudden anger and are really quite scary (and so not in my character! It's just not normal for me). Any sensitivities to light/sound? I find my vision is obscurred alot and often blurry and spotty. I get double vision alot as well. Also fluorescent lights are a huge problem for me, and bright light/sunlight. As well as alot of high pitched or loud sounds cause headaches. I have an earache alot and contribute it to the noises around me. I can barely tolerate the phone.
Since I have developed these issues I am not doing so well in articulating myself and these symptoms to my doctor. I ALWAYS FORGET to mention things to him. I've only been able to describe it to him as lightheaded/dizzy.... when it really is soooo much more than that.
I did have other issues besides the confusion. I had blurred vision and noises all seemed way too loud and annoying. One night I was in bed and a train went by normally a distant kind of nice sound, but this night it literally sounded like it was in my bedroom, scared me to death. I also felt very weak, nausea in the extreme, and breathlessness. A breeze outside, even my hair dryer, or a strong smell would take my breath away. One thing was very odd though, once in a while it would all lift and for a short time I would feel totally myself. I couldn't articulate what I wanted to say to my doctor either so I wrote everything down and handed it to him. It helped some. It got better for me even though at the time I had given up hope it ever would. Just try to be patient.
Thank you so much for your help I have tried to write things down, but then I forget to either take it out of my purse while at the doctors, or I leave it in the car. Go figure. Even my B12 sits in his office so he can remind me to take it! It's very frustrating cause I was never ever like this, but my memory is gone. I also have the weakness, nausea, breathlessness... I am going to ask my doctor about increasing my shots just to get my levels up, then going back to once a month as maintenance.
Again, thank you. It's comforting to know that someone else has experienced this, and there is hope that it will get better, with time of course. And just to know that I am not going insane!
I just noticed in your list of symptoms that you had numbness and tingling. That is another thing I had which was one of the scariest symptoms. I thought I had MS or something. The feeling is kind of hard to explain it is kind of like your arm or leg going to sleep but not quite. It would be sometimes in one arm and then in my leg. I'm bringing this up because you are afraid of permanent nerve damage. Well, I felt all that numbness and tingling really bad, but it went away. I'll tell you what helped many of my symptoms is xanax. I know that might seem strange, but vitamin b12 (I found out) is called the nerve vitamin and it is your nerves being deprived of the vitamin that's causing a lot of your symptoms. So anything that helps your nerves is good. You could see what your doctor thinks anyway.
Another pointer here Angela is to take B-12 sublingualy (under the tongue) and most B-12 is Cynocobalamin which maintains nerves but you want the form that actually regenerates the nerves and that is Methylcobalamin. With your symptoms i'd take the 5 mg lozenges 2 each 3 times daily for total of 30 mg a day.Yrs ago i had nerve issues with my feet and they (methyl) really helped alot...
To surpass the 120 yr Life Span !!!!
My mother had a B12 deficiency. You need B6, B12, and folic acid to conteract the B12 deficiency. Betaine also helps. You can get all this in one pill from Kal with a product called Healthy Homocysteine Modifier. It is inexpensive and the company suggested taking two capsules for two weeks to lower you homocycteine level. A B12 deficiency keeps the folic acid from going into the cells. It accumulates in the blood and you have high serum folic acid (also known as folate). The lack of folic acid in the cells causes the homocysteine to accumulate. High homocysteine can give you many diseases. Just go to google and put in high homocysteine under web and then under news and you will be amazed at the info out there.
Angela, please let me know if you decide to try this. I need to document how many people try this and how they are affected and how their doctors react. My mother took the Kal homocyteine modifier at double dose for two weeks in March 2003. She went from severe dementia back to moderate dementia.
You must keep taking the modifier once a day after the first two weeks.
I hope this helps you. God bless you in your journey.
Wow - a big thank you to everyone who took the time to offer their advice.
Elmhar - I have a gastro appt scheduled to have the endoscopy and colonoscopy booked and biopsies done. The appt is not for another few months (gastro doesn't know her summer schedule yet )
Kindredspirit - thank you, I will let you know if I try it and what the results are.
Nanjee - My levels have been low for a long time, but none of my many doctors decided to test it. My new GP did and was very surprised/worried with how low they actually were. I have had 4 injections now, and although I feel nowhere near "normal"... I do feel alot better . I did experience weight loss, but don't think I had the rapid heart beat. I have a gluten sensitivity (how severe I do not know - waiting on more tests), I am lactose intolerant (can't ingest any dairy/cheese at all) and I have other food intolerances (egg is a big no no for me).
Along with the B12 I am deficient in iron - and thats all that was tested.
I too have the chronic daily headaches - my doctor tells me they're "tension" headaches. I also have what he calls "migratory" arthritis.
My main problem, which still continues is the confusion/brain fog. I have trouble comprehending and I stumble on my words when trying to talk. I also forget things easily and my fiance has to keep reminding me of it all. But I am hoping that with continued B12 injections and treatment that will subside as well.
Your concern is well founded as B12 is essential for normal nervous system function and blood cell production. But, with proper treatments, the damage caused by a deficiency can be reversed - and even if you don't return to 100% pre-deficiency state, you will get to a point where you "feel" normal again (as someone once told me).
Another quick note, if you are a female this may be of interest - I know it was to me - Vitamin B12 affects epithelial cells (cells that form the outer surface of the body and line inner passageways). Therefore, a lack of B12 may cause a false-positive Pap smear. It's something to keep in mind.
Is your doctor looking into finding the reason behind your deficiency? This is important as it may affect the treatment/supplementation process.
Anyway, this is getting too long but if you want to compare notes again, I would be more than willing to share my "whole" story and the information I have found. I know when I was first told about my deficiency I was lost. Our stories may differ, as I am suspected of having malabsorption due to IBD as the cause of mine, and my doctor is relating my headaches and everything else to that.
May the Sun Bring You New Energies by Day
May the Moon Softly Restore You by Night
How "severe" is your gluten intolerance? Have you ever been tested for celiac disease? It just seems off to me that a gluten intolerance would be so severe as to hinder absorption - unless it was celiac's where the villi (sp?) are damaged and then there is malabsorption.
There are alot of very informed and well versed people on this site, sometimes it may take awhile to find the right board, but once you do you will be overloaded with information and great support. I know how bad it feels to feel alone, but through these boards I have found so much help.
If you ever have a question, or just need to "vent" on a bad day, you can count on me to "listen" and reply
You will feel better. I know it seems like you won't - god I thought I was going to be the first ever 23 yr old alzheimer's patient - but it slowly does get better, and slowly is the key word. Just take it day by day, and handle only what that day has, let tomorrow worry about itself.
Do you have a gastroenterologist? Have you had an endoscopy or any biopsies? It is very important to nail down the cause. For example, if you have celiac's, then you will more than likely have the B12 injections for life and have to have a gluten free diet (not even licking stamps ) - but if you have pernicious anemia a gluten free diet will not help. (and I suspect you already have the gluten free diet due to your severe intolerance).
When you start the injections, ask your doctor about methylcobalamin B12 vs cyanocobalamin B12. To use B12, the body converts the cyanocobalamin to methylcobalamin. Some people do not convert very well, hence if they are taking a cyanocobalamin B12 supplement they will still be deficient. Thats the short of it - hope it makes sense - I know it did in my head but its hard to get it out right. There is some controversary over this and many theories, but it wouldn't hurt to ask your doctor about it.
Also, I know some supplements aid in B12 absorption and some hinder. I can't think of them right now. I hope someone else will kick in and help - darn brain is in a slump. I think calcium binds to B12 and hinders its absorption, and folic acid helps absorption.... I'll figure it out and post it to you later. Just be sure to check how each supplement interacts with the other.
This post - with all the different people who replied to me - has some very good information contained in it.
Anywayz, thats my rant, just make sure your doctor is doing everything he can for you. I have seem way too many people suffer from "lazy" doctors - for lack of a better word. Be your own advocate, as you know your body best.
May the Sun Bring You New Energies by Day
May the Moon Softly Restore You by Night
I had an upper an lower GI series done which was inconclusive - GI doc said I had irritable bowel.
I had the blood work done for celiac disease - 2 markers were high, the rest were normal.
ONE NOTE to you - if you are seeing a GI doc - you will not want to be gluten free if he does an upper endoscopy - the test results will be off. There are so many people whose tests are "off" anyway - and there are a lot of "false negatives". Have you had the blood work done to detect celiac disease ?????? You would not want to be gluten free for the blood work, either
So I went through Entero Labs, who do the testing for gluten intolerance - I tested very positive. MANY people have used this lab who were getting nowhere with a traditional GI doctor. My internist strongly encouraged me to get this testing done ..... it is run through Baylor State University ..... LOADS of gluten research being done there. Kenneth M. Fine, MD is the leading researcher ..... I have spoken to him personally - fascinating and very intelligent man ..... very well educated on gluten issues.
Gluten intolerance CAN lead to malabsorption issues. It is not the same as lactose intolerance, etc. It can also lead to disorders of the pancreas, liver, skin, osteoporosis ....... the list is endless !!! Malnutrition is a biggie.
ALL of my soaps, lotions, toothpaste ... the list is endless !!! - are gluten free. That was a husge undertaking
SO - if someone would have paid attention to my slowly dropping B12 numbers - I wouldn't be in this position !!! Arrgghhhh.
My vitamin D levels have come up nicely ....... as have the magnesium levels.
Do you need to spend time resting during the day ????? I get SO shakey if I try to do too much .... it is ridiculous. I do a little - rest - do a little - rest ........ I am tired of it !!!
Keep in touch --- I am SO darned glad I found your post