Beginners Questions

Hi everyone,

I have just been told today that my b12 levels are low, but I'm looking for some more information. My doctor said the average was between 180-800 and mines was 62. I'm 21 years old. I have had some symptoms such as restless legs and loss of appetite, but nothing too severe.

I'm starting injections on Monday so i'll have to see if this makes a difference or not.

I was wondering if having b12 levels as low as 62 but not having severe symptoms could mean that it is linked to my diet? I'm not a vegetarian but I'm quite bad for skipping meals and always eating junk food.

I just wanted more information from those who have pa because it didn't seem like my doctor was that clued up on it as I saw him Google what treatment he should give me...

Thanks in advance!

10 Replies

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  • Difficult to say - yes diet can cause a problem but with levels that low it is much more likely to be an absorption problem - this is because your body is really efficient at storing and recycling B12 so generally people don't need to take much in from their diet. The mechanism that does the recycling involves B12 being stored in the liver and then released in bile back into the ileum which is where most B12 is absorbed (99%) and where absorption problems can occur - so this is when levels really start to drop and the big drops tend to be quite rapid at that point as the body is telling the ileum to release B12 but none of it is actually being reabsorbed to be used by the body.

  • Have the Dr also check your folate levels.

    Once you start on B12 injections you may use up other vitamins and minerals as your metabolism can go into overdrive. You may need additional folic acid and a multivitamin daily.

    Neurological symptoms such as short term memory loss, depression and anxiety as well as long nerve damage like your restless legs will take a long time to heal so don't give up as things don't improve immediately .

    You may also have gut issues as the vagus nerve is a long nerve too. Hunger or nausea are both symptoms that the vagus nerve is healing.

    Pain is another that may be misleading. As nerves heal the signal gets stronger and the brain takes a while to recalibrate. The result is pain. The way to get through is to do mild exercise rather than sit or lay in bed waiting for the pain to go away. Use the muscles to stimulate the damaged nerves and this promotes healing. I find it hard to get started but after about 30 minutes things get better and better and I can go all day sometimes.

  • Mine went to 20. You do need to sort it out to avoid potential long term neurological issues. At that point - 20 - I got angina. You are young and fit- please dont leave it . Take care xxx

  • I was the same age when my levels were first found to be low (74) and also thought I didn't have many symptoms at the time. In hindsight, I can see many issues I had but just didn't connect it all...so please don't only look for improvement with your restless legs and appetite. It may be worth writing down any aches and pains you have had over the last couple of years, sleeping patterns, toilet habits, moods, anger issues etc. Then you can look back and compare once you are well into treatment. Be wary of stoping the shots because you think you feel ok or the Dr says your levels are ok now...

  • "but not having severe symptoms could mean that it is linked to my diet"

    Dairy products, fish, shellfish, meat, eggs, fortified cereals are good dietary sources of B12, if you eat these then I would think that diet as a cause of b12 deficiency is less likely although still possible.

    Are you in the UK? If you have a levels of 62 with no obvious dietary cause then I think that the GP is supposed to give you an IFA (Intrinsic Factor Antibody) test which can help to diagnose PA (Pernicious anaemia). Its possible that becuase you are young teh medics may not immediately think of PA but it can affect any age. If you have neurological symptoms (links to lists below) the treatment is more intensive.

    b12deficiency.info/signs-an...

    patient.info/doctor/pernici...

    The GP can find the necessary information in the BNF (British national formulary) Chapter 9 Section 1.2. He or she will have a copy on their bookshelf. The treatment is also mentioned in the "BCSH CObalamin and Folate Guidleines". I gave my GP a copy of the whole BCSH document. As this document came out in 2014, some GPs are not aware of it.

    As far as I know the NHS is suppposed to be following the BCSH Cobalamin recommendations. GPs may find a copy of page 29, a diagnosis flowchart useful, it outlines treatment and investigations. I think summary of this next article is interesting. I gave a copy to my GP.

    bmj.com/content/349/bmj.g5226

    have you had a test for ferritin and a FBC (Full Blood Count)? I always get copies of tests. My experience has led me not to accept what I am told over the phone about results. The FBC can have useful clues. I check my MCV and MCH...high MCv and high MCH can indicate possibility of macrocytosis which is found sometimes (but not always) in B12 deficiency and PA.

    patient.info/doctor/macrocy...

    The PAS are helpful. useful info in library section.

    pernicious-anaemia-society.... 01656 769467

    Useful website

    b12d.org

    b12deficiency.info/

    Books

    Could it be b12 by sally pacholok

    Martyn Hooper, the chair of PAS has written several books about PA and b12 deficiency.

    Got to go now but wish you good luck in getting the help you need.

  • Thank you so much for all the helpful links everyone! Yes i'm in the UK. They tested my ferritin and gave me a full blood count also - he said everything else looks fine its just my b12 that is low.

    I'm going to look at all these sources and get myself clued up on everything.

    Thanks again!

  • "They tested my ferritin and gave me a full blood count also - he said everything else looks fine"

    Did your GP show you the results for ferritin, folate and FBC? I learnt not to accept being told everything was fine/normal over the phone or to my face without seeing the copy in front of me. On some occasions I was told everything was fine/normal only to find some results were not when I got paper copies. Most surgeries charge for copies.

    Even if all your other results were in range, it can still be helpful to see where you are within the range, I personally think it can be significant if a person is at the lower or upper end of a range. Another reason I get copies of the majority of my blood tests is that it can be useful to see trends over a year or two.

    I don't know if your GP has given you an IFA test. It is still possible to have PA with a negative result in an IFA test. The BCSH Cobalamin and Folate Guidelines mention Antibody Negative Pernicious anaemia.

    "I'm starting injections on Monday"

    It's good that you are going to receive some injections. I'd urge you to read the info in the "Management" section in this link....before you start injections.

    patient.info/doctor/pernici...

    A patient with neuro symptoms and B12 deficiency should be referred to a haematologist.

  • I woud think that your low B12 isn't linked to your diet. At your young age you will not be low on stomach acid,which is needed along with Intrinsic factor to absorb B12 . With such low blood serum levels that you have ,you should have been tested for antibodies to Intrinsic factor.Have you been tested? This isn't a 1000% accurate test,as you can have P.A. and the antibody doesn't show up. You also need plenty of folate (green leafy veg or supplement)

    Read Martyn hoopers latest book,just published " What you need to know about Pernicious Anaemia & vitaminn B12 Deficiency" (Amazon) A veritable mine of information for us all. Very best wishes to you.

  • Hi

    62 is very low, it could be your diet. Do you've any auto immune diseases in your family? If yes it could be pernicious anaemia. It's good that you are starting injections, keep an eye on your folic acid and ferritin levels as well, best to ask for a copy of blood test post them on hereto get a true reading as NHS level ranges are very low.

    Good luck

    Ollie

  • I doubt it is your diet. Junk food tends to be based around grains. meat, dairy and eggs.

    Have your doctor check you for anti-Intrinsic Factor antibodies. If the test is positive then you have Pernicious Anaemia (normally in older people, but not exclusively) and will need jabs forever.

    A negative result doesn't mean that you don't have PA as the test isn't very reliable.

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