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Receiving B12 injections but still tired

Posted , 23 users are following.

eleanor133
eleanor133

Hi, 

I was diagnosed with a B12 deficiency about 5 years ago and have since been receiving injections every 12 weeks. I have always struggled with tiredness, and thought receiving the B12 injections would solve this. I am still feel very tired, often needing to go to bed straight after work and sleeping through the night. I rely on the weekends to catch up on sleep as well - meaning i don't like to plan much on my days off. 

Has anyone else experienced this? Could there be another reason for me being tired all the time?

4 likes, 47 replies

47 Replies

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  • ashutosh_08364
    ashutosh_08364 eleanor133

    Posted

    I am 27 years old and I have been diagnosed with vitamin b12 and D deficiency. My b12 level is 120 and D is 9.8. I have taken 6 injections in 1 month. I also have taken D rise sachet which is 25000. I am vegetarian but I have improved my diet. I also take sun bath for half an hour. But still I feel weak after doing little or some physical activity. This makes me frustrating and losing self confidence. How much time it takes to recover from this? I did a whole body check up. CBC, thyroid, liver tests, urine tests are OK.
  • ashutosh_08364
    ashutosh_08364 eleanor133

    Posted

    I am 27 years old and I have been diagnosed with vitamin b12 and D deficiency. My b12 level is 120 and D is 9.8. I have taken 6 injections in 1 month. I also have taken D rise sachet which is 25000. I am vegetarian but I have improved my diet. I also take sun bath for half an hour. But still I feel weak after doing little or some physical activity. This makes me frustrating and losing self confidence. How much time it takes to recover from this? I did a whole body check up. CBC, thyroid, liver tests, urine tests are OK.
  • pat72272
    pat72272 eleanor133

    Posted

    Eleanor, I was diagnosed with pernicious anemia (Vitamin B12 deficiency) in 1990.  I have to take B-12 injections every 3 weeks.  If you are only getting one every 12 weeks, you might not be getting enough B-12.  The frequency of injections is based on your bloodwork.  Have you had bloodwork done every 6 months or annually to check you levels?  If you haven't talked to your doctor about your continuing symptoms, you should.

  • aneamic_pete
    aneamic_pete eleanor133

    Posted

    Hi Eleanor/All,

    Does any one have any idea why GPs are so reluctant to prescribe Hydroxocobalamin (B12) soluable, for injections, or any other B12 solution.

    It does not cost a lot. It is almost harmless but could make all the difference to a PA sufferer and could be self administered, once shown how to inject a muscle.

    I tried, after many years of PA symtoms, but find it imposible to an increase in my doseage.

    I have recently joined the PAS (Pernicious Anaemia Society) and armed with my new found knowledge comfronted my GP, firmly!!

    He could not argue with the paragraphs that I had highlighted from the societies book. He would not prescribe additional injections, to find out if there would be an improvement from my conditions, (he says"They don't do that!) But he did get rid of me very quickly by arranging an appointment with Haematology Department at my local hostpital. Tue May 02 May, a 6 weeks wait. I am 65 years old and not getting any better.

    I will be well armed for this particular appointment. I too am getting very frustrated with the system, when you can buy the solution "over the counter" in the USA and many European countries!!

    • clivealive
      clivealive aneamic_pete

      Posted

      Hopefully your Haematologist will be more clued up than your doctor.

      I wish you well.

  • susan23510
    susan23510 eleanor133

    Posted

    i have b12 injections every 12 week but has said she will give me them every 10 week i still am very tired pins n needles in my arms n hands so now i also take a b12 tablet along side multivitimin i have found this dies help me i have only 5 % stomach due to cancer and the injection is just not enough for wot my body needs can i harm my self doing this
    • clivealive
      clivealive susan23510

      Posted

      You cannot overdose on B12 as any excess is excreted via your urine.

      I'm sorry to read about your stomach cancer - has it been completely eradicated?

      I had two thirds of my stomach removed at the age of 17 back in 1959 due to an perforated peptic ulcer.

      I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years and I'm still "clivealive" and over 75.

      I wish you well 

    • marion29181
      marion29181 susan23510

      Posted

      Hi Susan, so sorry to hear about your stomach surgery. That will have a severe effect on your ability to get nutrients from your food. Have you had your levels of ferritin, folate and VitD tested too? These are needed to be able to make use of the B12 you are being given. A good B complex vitamin supplement will help too. 

      My GP has agreed to six weekly B12 injections, anything we don’t use is excreted. 

      I wish you well and hope you will feel better soon.

      ps There are sublingual (under the tongue) sprays that can help top up your B12 available from health food shops or online.

  • kate54564
    kate54564 eleanor133

    Posted

    Hi Eleanor 

    Just came across your post whilst doing some research and I can completely relate. I found out I had severely low b12 last year after a random blood test, I had 6 injections in 2 weeks and now have an injection every 3 months. Over the last couple of weeks I have been so exhausted intermittently- similar to you I just want to lie down when it comes over me (I am only 22) I have had some other symptoms such as pins and needles/aches/etc and a bit of diziness when it comes close to needing my next one. 

    I have been to the doctors to discuss having more injections/looking at pernicious aneamia as opposed to just a b12 deficiency but they were useless and basically told me to get on with it - my readings are high now (99 when I first found out and now at 1000) - I am adamant that a high b12 reading on a blood test does NOT mean you are no longer deficient/able to absorb or use it but the doctor didn't seem to agree or even give me any suggestions.

    I know you posted a year ago but I am intrigued to see if anything has changed or you have found any answers. Or if anyone else has experienced something similar?

    • clivealive
      clivealive kate54564

      Posted

      It is also important that your Folate level is monitored as this is essential to process the B12 you are having injected.

      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.

      Symptoms of a folate deficiency can include:

      symptoms related to anaemia

      reduced sense of taste

      diarrhoea

      numbness and tingling in the feet and hands

      muscle weakness

      depression

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

       You could always ask for an MMA test. Methylmalonic acid is a chemical used up in one of the cellular reactions mediated by B12. If there's not enough B12 in the cell then MMA levels will rise. If they're not high then it means your cellular levels of B12 are OK. High levels of plasma MMA (>0.75umol/L0 almost invariably indicate cobamalin deficiency.

      The symptoms of PA are the symptoms of the B12 deficiency that it causes. If the cause isn't dietary then it is an absorption problem so you need to find another way of replenishing B12 initially. Most absorption problems aren't treatable but a few are - notably h pylori infection - which would mean that once that has been dealt with you would be able to absorb B12 from your diet so wouldn't need maintenance shots for life.

      Times for testing

      "Taking supplements that contain B12 will affect any tests ordered by your doctor to assess your B12 status. You should not take any supplement with B12 for several weeks before having your B12 assessed (including MMA/homocysteine/Active B12). For testing intrinsic factor antibodies: keep one week between an injection and the test. 

      Please don't give up the fight for more frequent injections. If you join the Pernicious Anaemia Society (£20 for a year's membership) they may intervene with your doctor.

      I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years and am the "Guest" from 8 years ago that posted the original question.

      I wish you well  

  • amelia47753
    amelia47753 eleanor133

    Posted

    Hi Eleanor,

    I’m just wondering if you had any luck with finding out an answer?

    I’m struggling too. I’ve been on B12 Injections for about a year. I actually felt the difference when I had them I feel great for about 5/6 weeks in and then I’m always tired, constantly yawning and wanting to go bed, even nodding off at work which is really bad. Been for a blood test to check my B12 levels they said they said you have too much B12 and said I can’t have the injection this time in April and have to have another blood test in May to see if it’s the same. I feel absolutely tired and I really don’t know what to do as I’m just nodding off all the time! 

    Thanks 

  • portia1974
    portia1974 eleanor133

    Posted

    Hi there 😊

    My first forum . So pretty new to this. But a very similar story to yours. For the past 9 or 10 years I've been becoming increasingly fatigued with new symptoms appearing year on year. In 2014 I went to the GP at the end of my tether convinced my monthly cycle was gradually depleting iron stores. Blood test put my b12 at 109 and my ferritin at 5 (not sure what folate was as this was never mentioned). After initial loading doses of b12 have been on quarterly injections ever since. 4 years later and my b12 is now consistently above range in blood tests. BUT the kicker is I feel worse now than I did 4 years ago. The smallest of tasks knock me out physically. I only recently became aware of the importance of folate and only reading the replies here did I become aware of the relationship with iron. In the past 4 years my Iron has never gotten above (and regularly dips below)what I call "baseline" but the doctor likes to call normal because it means they can tell you you're fine and there's nothing wrong, because all of your clinical symptoms are irrelevant if the blood test is on that lowest possible line and not below it!! Bitter? Moi?! Essentially mine hovers around the 11-13 mark apart from the times it dips below. Currently it is 6. Folate is 7. Again this is baseline/low normal when you look at the ranges. But not one single Dr has mentioned to me the link between them and I am starting to wonder if they even know. Essentially I have PLENTY of b12 in my blood now, but my ferritin is deficient, and folate low. (Also vit D deficient) So I have to question whether the b12 they've been pumping into me for the last 4 years is pointless (in can't be used by the body) unless the folate and iron levels are optimal too??

    • clivealive
      clivealive portia1974

      Posted

      Have a look at the N.I.C.E. Guidelines I've sent in a private message.

  • sharon80051
    sharon80051 eleanor133

    Posted

    Glad I found this forum. I was diagnosed with PA about 10 years ago and take my shot every month. I still have roughly 8 of my original symptoms. Not every day but pretty regularly. Is anyone else in the same boat? I could sleep my life away although I do push myself to get tough jobs done. I wanted to increase my dose from 1000 but concerned about too much. Any suggestions would be appreciated. I should mention that I do get blood tests that come back ok according to my new doctor.
    • clivealive
      clivealive sharon80051

      Posted

      Fortunately you cannot "overdose" on B12 as any excess to requirement is excreted via your urine.

      Are you in the U.S? - I am in the U.K.

      I was started on cyanocobamalin 1mg every four weeks 46 years ago but for the last year or so have managed to persuade my doctor to let me have then every three weeks which has helped.

      What has also helped is I use a methylcobamalin spray each morning and I have also taken 1 – Folic Acid 400µg and 1 – Iron Ferrous Fumarate 210mg tablet every day for more years than I can remember,

      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.

      Symptoms of a folate deficiency can include:

      symptoms related to anaemia

      reduced sense of taste

      diarrhoea

      numbness and tingling in the feet and hands

      muscle weakness

      depression

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

      Have you had your Vitamin D level or your Thyroid checked?

      I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) since 1972 and I'm still "clivealive" at 77 years of age.

      I wish you well.  

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