B12 injections and neurological symptoms

Allergies, blood and immune system
1

Every day for 2.5 months, I've had paresthesia/neuropathy (in other words pins and needles, tingling, generally weird sensations) in both feet and both legs. My B12 was tested and isn't "drastically" low (275), but still low to where my doctor says B12 deficiency could definitely be causing these symptoms.

I've started a B12 injection regimen where I get two a week for 4 weeks, then once a week for another 4 weeks, then once every two weeks for a month (and as needed from there on out, I assume). So far, I've had the first 6 injections, over a period of 19 days. But here's my question - can it be normal that so far I've felt little, if any, improvement? 

A little more background - my first 3 shots were given under the skin, and it was as if I never got the injections. I didn't feel better, I didn't feel worse, nothing. Starting with the 4th shot, they've been giving them to me into the muscle. Now at least I can tell there's some sort of "reaction" going on. After each of the past 3 shots I've felt very tired the day of the shot. Also, the day after the shots my symptoms have been extra bad - really magnified. And one day I even had new stuff going on like burning wrists, feeling wiped out, etc... that didn't last more than one day. But through all this, even though I'm glad to at least feel SOMETHING is happening after the shots, I still can't say that I'm "better." I've read neurological symptoms can take the longest to improve and heal, and I'm hoping this is the case for me. Otherwise I'll start worrying all over again that this is NOT due to B12, and instead is something more sinister, like MS. Although at this point, my doctor doesn't think so. 

Help! Does anyone have any insight on symptoms like mine when it comes to B12 deficiency, and how it all relates to B12 injections and improvement time?

Thanks so much.

2

I have similar issues and am scared by my results. I have had some nerve pain and my B12 levels are low normal (they just did serum levels not MMA). It started out as twinges of pain in my extremities that comes and goes. More annoying than anything. I got a B12 shot and two days later my arms and legs were feeling numb. Now I just take methylb12 and some other supplements to help w the deficiency (I have been a vegetarian for over 10 years) and everyday I have worsening symptoms. I don't know if I should blame the b12 or something even scarier. Now I get tingling in my hands and feet. Burning sensations. Twitching all over (feels like popcorn going off!) and a restless sensation/crawling sensation that comes and goes in my arms. I am terrified at what's happening to me. My brain MRI was normal. I am seeing a neurologist in hopes for some answers but I'm freaked out.

3

How long have you been having symptoms of B12 deficiency and do you know the cause?

Anyone at any age, can become B12 deficient. Thus you need to be tested immediately if you develop the symptoms described  in this chapter. 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.

Women with a history of infertility or multiple miscarriages.

Infants born to and/or breast fed by women who are symptomatic or are at risk for B12 deficiency.

Do you "see" yourself in any of the above?

I am not a medically qualified person but as I understand it the injections should ideally be into the muscle not just under the skin.

It is not uncommon for things to get worse before they get better and it may be several months before any real improvement can be felt and the damage is being repaired.

Make a "diary" of your symptoms - this will help you identify where and when improvement has occurred.

This is not a "magic wand" cure and it may be months before you get "back to normal".

Have you had your folate (folic acid) level checked as this is essential to process the B12 especially now you have started the injections.

Worrying about it is the worst thing you can do as stress simply uses up B12.

I've had P.A. for 45 years and I'm still "clivealive" at 75 biggrin

I hope this helps put your mind at rest and I wish you well for the future

  

4

What you are experiencing is "par for the course" for low B12 levels and can largely be explained by the fact that you are vegetarian.

B12 can only naturally be obtained by eating red meats, fish, eggs and dairy products so the normal "reserves" stored in the liver get depleted if your diet does not include any of the above.

There are other causes, like gastric surgery, extreme exercises, exposure to nitrous oxide, contraception pills, stress etc

I am not a medically qualified person and you really need to persuade your doctor to give you a trial run of B12 injections according to the BNF guidelines:

Treatment of cobalamin deficiency

Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF, 

Standard initial therapy for patients without neurological involvement is 1000 μg intramuscularly (i.m.) three times a week for two weeks. 

The BNF advises that patients presenting with neurological symptoms should receive 1000 μg i.m. on alternative days until there is no further improvement.

However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment.

Make a list of your symptoms and don't let him fob you off by saying your  "B12 levels are low normal" - he must treat your symptoms.

Mention all this to you neurologist

False normal B12 results and the risk of neurological damage  (U.K. N.E.Q.A.S Haematics)

“In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord. We recommend storing serum for further analysis including MMA, or holotranscobalamin and intrinsic factor antibody analysis, and treating the patient immediately with parenteral B12 treatment.” 

I wish you well for gthe future  

5

Hi goodmorning!

I hope ur feeling better..

I have almost the same story..it started last year,i felt first like tingling sensation on my lower abdomen that i thought i might have uti..i went to dr and had urinalysis,i had very little infection and he gave antibiotic..after a a week i went back to the dr since o still have the same tingling sensation and he asked me to do again urinalysis but no more infection..i decide to have ultrasound,they found out i have polycystic ovaries and then he referred me to a ob gyne who did ultrasound again and found nothing abnormal and no polycystic at all..then i started becoming paranoid..i got nack pain,neck and shoulder pain..i went to a bone dr and it was muscle problem..and i did some physiotherapy session still its not going to normal..i had my thyroid checked already it was normal..that moment i felt like i want to vomit also,there is something in my stomach that i want to throw it out..its been almost a year now..recently,i fell vibrations like in my legs i can feel it when im standing in one place and when im lyong on bed..i can feel the pulses on my back..i got different feeling at the back of my head that makes me more worried now..also,i have this small pimple like at the back of my mouth that will go away after 2 days then come back again..my tongue is little sore especially in the side part..nails are brittle that i cant make it longer..i remember also,there are times that i easily feel cold even in a room temperature place..well my vision is bad now..im wearing eyeglasses..for now im waiting for my vit b12 result..i realky dont know wht else to be done..i did mri for my neck but its more kn my muscles again..i hope u guys can give me some ideas on how to cope this symptoms that i have..im in qatar now working so,im far from my family..thank u so much!!

6

Unfortunately, the symptoms do often feel worse when you start to get treatment.  Your body has been crying out for B12 for a long time and struggling on a low amount. Suddenly it has B12, and it hits the spot with a surge, and all those nerve endings are in overdrive. It does settle down, but you do need to make sure you have everything else in balance. Have you had ferritin, folate and VitD levels tested? You also need a good quality regular B vitamins supplement. Wishing you well. Marion

7

Hi Molly. For the first few B12 injection you have. All this is normal as it is to be given for a few months before you start to feel the benefits and start to feel better. I have been having B12 injections for the past 10/12 poss more years. 2weeks before my b12 I felt like I'd been hit by a train, and for 2weeks after until the injection kicked in. As I am fairly fit, my energy levels were great for the next 2.5 months until the b12 was due again. The pins and needles I had in the beginning of all this like you. Then nothing for years. The 2months ago I wake in the morning like I had run the london marathon. Headach pins and neddles my arms felt heavy and I had problems bending my fingers. I still have to work of cause as we all. I feel so tired all the time. If I sit down my legs hurt and are stiff. This for me is no way normal. Had 2 blood tests done in a month, Waiting for results. I hope for some part this may help you. I do hope you start to feel better soon. Take care. A

8

Hi julie. The symptoms your having now is the same for me. I have been having B12 for years. Had pins and needles in the beginning. Nothing for years. I have not eaten wheat or gluten for years. Eggs, nearly all dairy I have problems eating. But the way you have just said about the way you feel. Its the same for me. I don't get the twitching but the feeling of something like crawling in my legs, But like a dragging sensation down my arms. Yes it is scary as I have had all this none stop now for 2months. I realy do hope we all feel better soon. This is so not nice. Take care. A

9

Hi Clive. I was tested for Chrones/Cealiac results came back I was borderline. No tests at all for years. Now there checking after more than 10years. Makes you think. A

10

You say "I have been having B12 for years." do you mean youv'e been having the injections or the symptoms of B12 deficiency?

I am not a medically qualified person, but If you are having the B12 injections and are still getting the symptoms "none stop now for 2 months" I think you need to go back to your doctor and ask for an increased frequency of injections.

Sadly most GPs seem to have this "one size fits all" attitude  without taking into account their patient's height, weight, metabolism or lifestyle etc., instead of treating the symptoms that you should list and present to him

Also, ask to have your folate level checked as this is essential to process the B12.

I wish you well.

11

Yes - Chrones/Cealiac often misdiagnosed - the possibility of B12 deficiency disregarded when (even if tested) serum b12 test results come back as "Normal" sad

12

Everyone's input has helped ease my fears a bit so thank you. It is scary to have all of these new and evolving symptoms - I'm terrified it will impact my motor capabilities (I have three very young children to care for!).

It seems like everyday I wake up to a new one 😞

Another concerning issue for me is my "deficiency" symptoms weren't text book. I was just feeling twinges of pain in my extremities. I never had the sore tongue or fatigue that seems to be he more classic b12 deficiency symptoms. I truly hope the b12 is my issue and not something progressive or something that can't be treated.

I will be thinking of you all as you recover. Please keep me posted as you move forward. I can't wait for this to be behind me. So scary!

13

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. 

14

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.

 

15

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

16

Hi Clive. Very sorry. Yes I am having every three month Injections of b12. I have been taking a folate tab for 10plus years 1every day. The first time I had my first b12. The prob now is they are saying my folate in my body is 3times higher than it should be. So they have stopped me taking folate. So could it be withdrawls from stopping the folate. Wish it will all stop soon. Thank you clive for all your advice. A

17

Hi Clive. Had today a letter from my GP about my full blood count. Must have my bloods done again in a month. Must make appointment about my cholesterol. Not sure what they are checking for as they wont say until blood is done again for the 3 time will be in 2 monthsThank you for all your help. A

18

I'm not a medically qualified person but if they are testing your serum B12 level again it will really only be of use if it comes out low as you are having the injections.  

As to your high folate level, ideally this should be being "used up" processing the B12 - unless of course you are overdosing.  Whatever the cause it will need to be monitored continually.

I take a folic acid 400μg tablet every day plus it is to be found in my breakfast cereals and also green vegetables such as broccoli which I eat 3 - 4 times a week, yet my level in March was only 18.2 ng/ml in the range 3.10 - 20.5 ng/ml and "flagged" as "Normal"

19

Hi Molly . There are certain things which make pernicious anaemia likely according to a medical dictionary I found and these are : having blue eyes , vitiligo , or blood group A . Because vitamin b12`s job in your body is to help form blood cells , switch off cancer cells , to maintain RNA and DNA and to bind to a body damaging protein called homocysteine , if you do not have enough b12 , you will get a relative iron deficiency and when this is left for a long time , changes can start to occur in your DNA structure itself and can start to compromise myelin composition , which will lead to MS if left untreated . If left long enough it will eventually lead to changes starting to occur in your bone marrow and cells will become cancerous and cause leukaemia . When b12 levels are too low , homocysteine levels rise and this will eventually lead to the formation of Lewy Bodies , which is a sort of sludge that blocks your neural connections and stop them firing causing dementia . Homocysteine exits the body using the vitamin pathways of b12 , b6 , folate and choline .

         The problem many people face , is that they have a malabsorption problem and will not be able to convert the b12 in their body . Generally in the UK , the normal b12 serum level has been set way too low and so a patient has to be pretty unwell before their GP will be able to treat with b12 and if they do treat , it will be with an inactive form of b12 called hydroxycobalamin . People who are having malabsorption problems need an active form of b12 which is not available on the NHS and has been reserved for the private sector , where doctors are charging upwards of  £100 per injection for methylcobalamin , which should really only cost around 70p per dose . So .......what can we do ? Well......there is hope !

         Because vitamin b12 has a large molecule , it is not  easily  absorbed through the gut  and this puts people with pernicious anemia at somewhat of a disadantage because people with pernicious anemia cannot produce intrinsic factor in their stomach , which is needed for the absorption of b12 . There are now many methylcobalamin sprays to buy  on line and in health food shops . Because the b12 is in spray form , this helps to break up the large molecules . These are designed to be sprayed under the tongue instead of going through the stomach , which means that the b12 goes in the body through the glandular system and can bypass the gut .

       There are other dietry things worth using . Beetroot cotains cobalt and something called trimethylglycine , which binds to the homocysteine in your body and helps the body get rid of it  . Blackstrap molasses contains iron , b6  trimethylglycine and other minerals and nutrients . There are other foods such as seaweed , dulce and Korean Kim Chi are b12 rich and there is a Japanese tea called battabattacha which also contains active b12 .

        To assist with absorption of b12 , many people take methylcobalamin spray with CoQ10 , which is a harmless enzyme which protects your heart . 

             

                                        

20

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.