B12 injections and neurological symptoms

Good morning Marice. Do you have any problems with certain foods you eat. As I have to watch every thing I eat. One thing came to mind when I first had my full blood count done when they found my b12 low as 107 15yrs ago. Was H Pylori or Heliobactera in my blood. Was given I high dose of antib to kill the bactera. Never said where it came from, or how long I have had it. As it stripped all the lining in my stomach. Will keep you posted. Take care. Amanda.

Avoid rice and potatoes starch..may be causing malabsorption..also take apple vinegar for low stomach acid

You really do need to try and get more frequent injections.

Ideally you should be receiving more frequent injections as the BNF guidelines say below of treatment with Hydroxocobalamin:-

By intramuscular injection, pernicious anaemia and other macrocytic anaemias without neurological involvement, initially 1 mg 3 times a week for 2 weeks then 1 mg every 3 months

Pernicious anaemia and other macrocytic anaemias with neurological involvement, initially 1 mg on alternate days until no further improvement, then 1 mg every 2 months.

That is the regime your doctor should be prescribing for you and even every two months may not be enough if your symptoms continue.

I struggled for nearly 40 years in total ignorance thinking I was the only one in the world who struggled in the period before my next injection. I joined the Pernicious Anaemia Society six years ago and found that I was not alone and there are hundreds if not thousands like me "out there".

Although I am not a medically qualified person, from what I have learned during the past 6 years, I've managed to persuade my present doctor to allow me to have my "lttle shots of RedX" more frequently "when I feel the need" and I'm still "clivealive" @ 75. 

Not everyone has the same or even all of the symptoms which I listed above to maricel61969 and not everyone reacts to the B12 injections they are having.

I've been on cyanocobalamin for 44 years since 1972 and when I was "tried" on hydroxocobalamin in the late eighties I had adverse side effects, came out in a rash and certainly couldn't last the three months regime as I had cyano every four weeks.

I'm now finding even four weeks between injections is too long and have pedrsuaded my doctor to allow them every three weeks from this month on - but I had to fight for them and it was a long struggle.

I hope things start to improve for you soon.

 

Hi Julie. You are going to be fine. You just said you have 3 young children. So your going to feel tired washed out like we all did at the time of our children were young as I have 3 myself. Mine now are all grown up. But at the time I was expecting my first child in 1989. I did not know at this time as it was never checked that it was a possibility I already had pernicious anamia b12 deficiency. Makes sence to me now. All the very best to you too. We are all here for you too. A

Hi Julie! I wonder how you are doing now and if you have Any insight to share? I too have three Little ones and my symptoms started clearly with the twinges you describe.. hope you’re feeling better! 

Interesting comment lesley05589.  

I am not a medically qualified person and have "lived in ignorance" about Pernicious Anaemia for most of my life.

I was diagnosed with P.A. 44 years ago in 1972 following gastric surgery 13 years before in 1959  involving the removal of two thirds of my stomach due to a perforated peptic ulcer at the age of 17.

My treatment was either to eat raw liver three times a day or have injections of cyanocobalamin every four weeks for the rest of my life.

I have just this month managed to persuade my doctor to stray from the "one size fits all" mindset and increase the frequency of my injections to every three weeks because of the return of symptoms in the run up to my next jab.

Do you know how effective the B12 methylcobalamin sublingual sprays are?

Although I start my new regime next Monday (1st August) I feel I need to boost my level which (when last tested in March) was in the 400s and at my age (75) should be in the 1000s.

Any advice will be gratefully received.

A fascinating reply Lesley, I'd not heard about beetroot helping the body to remove homocysteine before. Or some of the reasons for developing B12 deficiency in the first place. Mine began after several operations, as nitrous oxide in anaesthetic is known to deplete B12.

Marion

Hi Molly,

Sadly I think you need to become a "patient patient" with your treatment for B12 deficiency and a lot will depend on the length of time you have been suffering from it and your two shots a week may not have been enough anyway as the guidelines say "initially 1 mg on alternate days until no further improvement,then 1 mg every 2 months."

Some people have likened the effect of B12D on the nervous system to that of electric cables where the insulation has been damaged so the current is leaking away instead of getting through to the lightbulb.

Injections of B12 start to repair the outer sheath (insulation) of the damaged nerves (cables) and all of a sudden the "lights come on" in the brain as it starts to receive messages (current) from places previously not in touch with for a long time.

Another simile is that of a badly tuned radio that you (the brain) has to strain to listen to even with the volume turned up high when all of a sudden the signal (B12) gets "tuned" in and the result is painfully deafening.

I know it is worrying and painful as I went through a period of up to 13 years of B12 deficiency following gastric surgery in 1959 at the age of 17 before I was (eventually) diagnosed with P.A, back in 1972 and started on treatment.  By that time, nearly 45 years ago, I was like a walking Zombie and it was a long long time before I got back to normality.

Hopefully your B12 deficiency is nowhere near as bad and in a perverse way you might even be comforted by the fact (and feelings) that the B12 injections are beginning to "work".

Please, please, please stop worrying as stress only uses up B12.  Make a daily note of the symtoms and as time goes by see the improvements.  Some symptoms may get worse and others better but that means you are on the way to recovery.  A toothache never hurts as much once aan appointment with a dentist has been made. Knowing you B12 is working can have the same pschycological effect.

By the way, I liked the analogy of the cable and nerves as I was a qualified electrician back in the 1960s...

I wish you well Molly.

I think I did try to explain this worsening of symptoms with the radio analogy. Your body has been very low, and is desperate to get B12 into the cells. So to begin with it's as though the "volume" of all those nerve endings is on maximum. It does settle down, but it does take time. The nurse who did my injections kept asking if I felt better yet, but I had to reply no, it was as bad if not worse! Your doctor should continue with the injections at frequent intervals while you still have neurological symptoms. In order for the B12 you are getting to be used by the body you do need ferritin, folate, VitD, and other B vitamins to be at optimum levels. Don't expect to feel any immediate change. It took several months for me to feel that the symptoms were subsiding. We are all different, and recover at our own pace. A lot depends on how long you were deficient. We have a store of B12 in the body, enough to last around three years. So if it gets to the stage we are having symptoms, then we've probably used up around two and a half years worth. That won't be replaced in a month. Marion

Thank you so much for taking the time to respond to me again, and I really appreciated your good description. This is what I was hoping to confirm - that just because the injections haven't relieved my symptoms at all yet, that doesn't mean my symptoms aren't caused by B12 deficiency... and that it's not unusual for it to take lots of time for nerves to repair. And yes! I actually do feel a great sense of "perverse happiness" in my increased symptoms, as long as it's not making me worry I have something like MS instead of the B12 deficiency. I am going to hold out hope that my symptoms WILL start to lessen eventually, and I'll be able to stop worrying about other more serious possibilites. 

I'm due for my 8th injection this week, and then supposedly it's once a week starting at that point. But I think I'll ask my doctor about continuing twice a week until some sort of improvement.

Thanks again for your reply, so very much appreciated!

Marion, thank you so very much for responding again. I was just getting confused with other posts on my initial question, that started to delve into someone else's situation - which is fine, glad that can be addressed too! I just didn't want to get away from my original query since I really do value people's perspective on it. Like I told Clive, it makes me feel better if I know it's NORMAL for no improvement at first, even after several B12 shots - and to even feel worse, as I do. I can certainly hang in there better if I'm not clouded with the worry "ok, but IS this even all due to B12 deficiency? Or could it be something much worse..?"

Thanks again. I am going to try and regain my positive attitude that this WILL get better! I had felt very optimistic about it for a long time, but recently just had been getting more and more discouraged as I started to fear other conditions again. It will help me to be patient as long as I remember it's ok that it seems nothing's happening! Thanks so much for your explanation and comforting words!

I was told by my doctor that I had about nine years worth of B12 stored in the liver.

Thirteen years elapsed between gastric surgery in 1959 and my eventual diagnosis of P.A. in 1972 by which time I was a Zombie.  

Ironically I had a Schilling Test done in 1968 (9 years after surgery) which involved having a huge injection of B12 as well as drinking even more radio active B12. Although that test result was "inconclusive" it may be that the B12 boost I had then enabled me to "stagger on" for those extra 4 years until 1972 when I had a second Schilling test that proved positive for P.A..

During those intervening 4 years I lost my job (as a qualified electrician and wholesale buyer) through "sickness", was treated for hypertension and depression, put on Librium, Tofranil and Valium, Tuinal sleeping pills, given powerful antispasmodic antacids called Neutradonna, assessed and sent away to London for a five month long Government sponsored re-training scheme in accountancy in September 1969 on completion of which in February 1970 I was registered disabled and got a job which lasted 27 years.

I went through all that without knowing anything about B12 deficiency or P.A. or having any idea why I was feeling so dreadful.

A case is recorded part of which reads “… He (the doctor) wasn’t surprised: The woman’s history included a gastrectomy twelve years earlier that inevitably results in severe B12 deficiency if patients don’t receive compensatory B12 injections”.  

Should I have not been warned of this back in 1959 after my gastric surgery and given B12 injections instead of just being advised to “get a sedentary job”? 

I think it is very important that "newcomers" to B12D and P.A. have people like yourself Marion29181, who are able to give good advice, available on forums like this.

Thank you for that Clive, I know when I was first diagnosed I knew nothing about B12, and relied heavily on advice from forums like this. So if I can put any of my experiences to good use I will. I'm still quite new at all this about two and a bit years into treatment, but still learning as much as I can about what works and what doesn't. Marion

In this case "ignorance is not bliss" but what many doctors suffer from.

My previous GP six years ago was a "one size fits all" guy who only after much badgering reluctantly "allowed" me to have an "occasional" early injection "when I felt the need" whereas what I really needed was for them to be at more regular intervals permanently and for it to be on my records.

That was like trying to fill a leaky bucket and just occasionally sticking a finger in one of the holes

 

Fortunately, my new doctor has agreed for me to have them every three weeks from this month on.

There is "life after P.A." and I'm still "clivealive" aged 75.

Please keep up the good work.

Hi Clive, I have read you are not qualified to give professional advice but you clearly are a wealth of knowledge ... My son has a severe speech receptive/expressive, he was at first thought to have high functioning autism and now I am told might be a language processing disorder, I have made a lot of changes as he had a damaged gut due to milk allergy and one of those changes was to switch to a vegan diet which showed improvement, three weeks on this change of diet I decided it was time the family supplemented with Methyl B12 melts. I would break off a quarter of 1000mcg tablet and give to my 5yr old son, the very next day he was talking clearly, understanding better, he was switched on and then 4 days later this response had worn off. I will be going in for a blood test to see if he is deficient and his specialist is on holidays, just wondering if this initial response and then regression is indicative of something.

Hi Tina,

You may well have "hit the nail on the head".  Putting your son on a vegan diet resolved one (or more) problems with his digestion but eating animal products such as red meats, fish, seafood, eggs, poultry and dairy produce is the only natural way we can source Vitamin B12.

With your son's previous digestive problems. he may well have been heading toward developing a B12 deficiency as high levels of stomach acid are essential  for his Intrinsic Factor to "grab" the B12 in food as it "goes down".

In a normal healthy person the stomach lining has what are called "Gastric parietal cells" which produce "Intrinsic Factor" which travels with food through the small intestine which is made up of three parts - the Duodenum, the Jejunum and the Ileum..

Iron is absorbed in the Duodenum, most other nutrients in the Jejunum and our friend B12 in the Ileum.

Here the Intrinsic Factor binds to the B12 and the "B12/IF Complex" enters the cells on the wall of the Ileum after binding to receptors on the surface of the Ileal cells, allowing it to enter the blood stream.

Sadly some people with "traditional P,A." either do not produce Intrinsic Factor or if they do, they also produce an antibody which destroys it and it is then called "Autoimmune Pernicious Anaemia". In addition it can happen that we produce "Parietal cell Antibodies" and "Intrinsic Factor Antibodies" which totally wipes out any chance of absorbing the B12.

That is an "overview" and I'm not suggesting that any or all of it applies to your son but there is no lower age limit and the fact that he showed improvement after supplementing with B12 suggests that he is able to absorb it via his stomach.  If he continues with a permanent vegan diet he will need B12 supplements for life.

It is not clear for how long or how many doses your were supplementing. Did you stop and then four days later your son "regressed" or were the supplements continuous? 

A note of caution here because the serum B12 test result may be "skewed" by reason of the supplement as this only measures what is swirling around in the bloodstream and not what is happening at the cell level so you must tell the specialist how much and how long before the test your son has been having the sublinguals.

As you say I'm "not qualified to give professional advice" but I'm really hopeful that your son's "suspected" (by me) B12 deficiency is purely down to his vegan diet which can be so easily resolved.

Fortunately you cannot "overdose" on B12 as any excess is excreted via the urine.

Please come back and let us know how the appointment goes and I wish you both well. 

Thanks for your prompt reply, as you can probably imagine I am grasping at straws to piece this puzzle together so I appreciate your thoughts. The dosage was continuous once daily and the behavior was diminishing after day 4, maybe it was because we were three weeks into vegan life and he had a initial response. I will let you know how it goes with the results. Cheers! 

Regardless of any possibly "skewed" serum B12 test results coming back "flagged" as "Normal" as long as your son continues on a vegan diet he will need to be given B12 supplements one way or another.

Just in case your son has an absorption problem with his stomach I suggest you ask for his serum Folate to be tested along with the B12. 

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body. 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.

I have the worst possible scenario - Pernicious Anaemia - for which I have been having B12 injections for more than 46 years yet I'm still "clivealive" and over 75.

molly tjanl

you for commenting im at week 2 day 1 of injections--- i feel AWFUL! i have medical

knowledge but not a professional, not active and not in this. i started with revirrent sore "left tendonitis in elbow-shoulder " . went away, came backfor about a year- got a shot half way tjeu for elbo. - got worse , sought more treatment- all heck blew loose. i have severe nero issuesim off work right know even. i have signs of what could be stroke cancer ms lupus etc im freaking myself

out trying to figure out what the..... i have had a very painful "spot" in my lower left skull , vision issues, speech issues thought issues hand eye issues left weakness and on and on , my doc s thought thoracic outlet, 0pinched nerve...etc- but my emg came back "abnormal but no specific reason" 2 weeks ago. so new family doc ran a ton of blood and we are waiting for a brain and neck scan. two days later she called after hours to say b12 deficient and het inject next day. that was 2 weeks ago. i do not know WHY b12 is low, creatine has been chronically forever low and rbcw is at about 14 consistintly. i have depression issues and usually het dismissed that its all rhat. the big kicker is when i realized i forgot

peoples / close friends names-- NEVER DO THAT i get it down within 5 mins of meeting them - ALWAYS

SO THANKS FOR ALL THIS- WVERYONES COMMENTS ON YOUR POST AND TOU HAVE HEPED ME

TO BECOME A PATIENT PARIENT AND I MAY NOT LOOK UP WHY I HAVE A FLARE UP OF SYMPTOMS TODAY(and convince myself im dying