Four weeks after loading injections and still no difference

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Has like many, this is all new to me. I had my loading injections four weeks ago and was hoping I may of started to feel a difference by now! I don't have quite as much tingling and numbness as I did, but do still get it along with the annoying feeling of sickness, does this sound to anyone with more experience that it is showing signs of progress, but just slowly?.

There is no change in the tiredness and fatigue.

I'm at my witts end with feeling like this!!

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8 Replies

  • Posted

    What was your diagnosis - P.A. or Vitamin B12 Deficiency?

    It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

    I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

    A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery. Some symptoms will "disappear" quite quickly whereas others may take months or even years.

    There is no set timescale as we are all different.

    As to your "annoying feeling of sickness" that may be caused by low stomach acid which in turn may explain why your B12 was low.  What other medications are you on.

    This is a complex subject and there are a dozen or more reasons for a B12 deficiency.

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

    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.

    I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.

    I wish you well.

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    • Posted

      Hi Clive! My diagnosis was a "low" b12 of 110. Should I asking the question to my doctor, if my folate and iron levels was also checked at the same time? If they wasn't, would it be right for me to ask for that check at my next blood test? - Don't want her to think I'm telling her, her job!!

      Thankyou for your reply.

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    • Posted

      You have the right to have copies of your blood tests - you may be charged but it can only be a nominal sum.

      Sadly many doctors are unaware of the problems of B12 deficiency - it's a vitamin for goodness sake!!! 

      Make a list of your symptoms and present this to your doctor and ask her to treat you according to your symptoms and (perhaps) even re-start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 "deficiency"

      https://www.google.co.uk/url?sa=t&rct=j&q=&esrc=s&source=web&cd=8&cad=rja&uact=8&ved=0ahUKEwjJwpuVwuzUAhWTOsAKHXj8B3sQFgg9MAc&url=https%3A%2F%2Fcks.nice.org.uk%2Fanaemia-b12-and-folate-deficiency&usg=AFQjCNFje3rEICwABYJ6ZJS4D-nMto5QTw

      If possible take someone with you who can validate your neurological symptoms as your doctor is less likely to pooh pooh you in front of a witness.

      What is your diet like?  You need to eat plenty of meat, fish, seafood, eggs, poultry and dairy produce for B12 and also lots of leafy green vegetables, sprouts, broccoli, spinach, asparagus, peas, bean etc for Folate. Folic acid is also found in mane breakfast cereals.

      Are you on any medications that will "interfere" with B12 absorption?

      Do you have thyroid problems, diabetes or any other autoimmune diseases?

      The list of reasons for B12 deficiency goes on and on and it would be good for you to know what has caused yours.

      Remember, I'm not medically trained but I am still "clivealive" at 77. surprised

       

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    • Posted

      A huge "thanks" for your advice. I understand you're not medically trained, however, would sooner take on board advice from someone that has the experience of has many years has yourself.

      Up to the time of blood tests, I was taking HRT, nothing else.

      Reading the last reply, my deficiency may well be down to eating very little meat (I'm not vegetarian, just not interested in meat).

      I do eat chicken and fish occasionally. Cheese and eggs in moderation.

      I do eat lots of vegetables, any kind.

      I have explained all my symptoms to her, that was the reason behind the blood tests,but she never suggested continuing with the loading doses until my symptoms have cleared, just said, they will re-test in 12 weeks.

      Thankyou again for your time and patience.

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    • Posted

      Sadly retesting is likely to come back high and the doctor may shrug and say you are OK now and need no further treatment even though by the your symptoms have probably got worse.

      Testing of serum B12 levels after treatment has commenced is not necessary. (See bottom of page 5) where the 2 months interval of injections for those with neurological symptoms is also reiterated.

      https://www.hey.nhs.uk/wp/wp-content/uploads/2016/03/vitaminB12FolateDeficiency.pdfThis link may not go through and may be "moderated" if so I will message you with it

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    • Posted

      Sorry for delay in replying.

      The link didn't come through, has you thought may happen.

      Over the last couple of days, I think there is a very slight improvement? I'm slightly cautious in saying this, has whenever I think this, I'm then wiped off my feet again, feeling rubbish!

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  • Posted

    I would just echo some other comments here. It can take a while, especially if you've been deficient for quite some time. I must admit I never felt that 'oooo, feeling quite good!' thing I'd hoped for after any injection, but I do notice I feel worse in the 3rd month when I'm due another one. So for me, I don't feel the huge benefit even after years of treatment, but there are improvements. It's a slow process for most I think, especially with the loading injections so don't despair about not feeling any better yet. Make sure they keep an eye on your levels and check for any other deficiencies too (iron, folate, Vit D, thyroid).

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