Understanding what it feels like to be B12 and folate deficient

Over the weekend I was ambushed by a sickness bug, I was in pain, exhausted and miserable with a screaming headache – however I knew it would pass and that I would be free of feeling like a rag doll in a matter of days.

It occurred to me that what I was experiencing would be just a tenth of what some B12 deficient patients suffer every day of their lives, particularly those who remain undiagnosed, misdiagnosed or indeed those who remain desperately under treated on the paltry 4 injections a year that they are allowed.

I consider myself incredibly lucky that my B12 and folate deficiency symptoms never caused me to experience chronic fatigue but there are thousands of people who live with this every day.

I have no children to look after, but can you imagine feeling like death and having to carry on and look after a family, hold down a job, function when it is almost impossible to breathe, think, walk or stay awake? Many struggle to hold onto their jobs and their families when they are not treated correctly.

When asked to describe how it felt to be B12 deficient a friend, Lynne Wood, described a scenario which perfectly illustrates this, she explained that if you were to tie a sack of spuds (potatoes) to the back of each leg, each arm and to the back of your head and then go about your working day it may come close to what she felt like. I am sure many will identify with this.

I heard an account of a GP being asked (in a social setting) if he gave B12 injections to patients who requested them earlier, his response – “It depends what they’re like”,  so he based medical judgement and treatment on whether or not the patient was to his liking rather than on the manifested pain and suffering. Surely this disgustingly sadistic approach is rare and the neglect B12 deficient patients face is usually as a result of ignorance.

What continues to floor me everyday is that thousands of B12 deficient patients are neglected and refused additional life saving B12 injections despite pleading for respite from their symptoms. I know of patients who are sent away for being even two days early for their quarterly injection, can you imagine this? What caring person in their right mind, would keep someone in pain and suffering when the treatment is so simple, cheap and effective?

This deeply ingrained ignorance which filters down from doctors to nurses creates a barbaric situation for patients.

A dog taken to the vets in such a terrible state might actually be put down – however we all know that a vet is taught far more about B12 deficiency than many of the doctors that B12 deficient patients encounter.

On a lighter note – although a little disturbing, someone wrote to tell me that the health food shop had run out of B12 supplements and so she was advised to take double the dose of B6……… Unbelievable!!

 

If you need an excellent support group please consider joining Pat Kornic’s group – https://www.facebook.com/groups/PAB12DSupportGroup/?fref=nf

Raising awareness:http://www.b12deficiency.info/how-you-can-help/

If you want to be in charge of your own health please sign and share this petition – https://www.change.org/p/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter?

 

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32 thoughts on “Understanding what it feels like to be B12 and folate deficient

  1. Dear Tracey, I had lost this thread and have now found it. I have had my first B12 injection after a test which had me at 118, but still within the normal range according to the lab!!! I convinced the GP (a different one) to give me injections as my feet are very numb and tingly, having more palpitations than I did when anaemic ( am up in the normal range with haemoglobin count). Have had a serum folate test which was 15.3
    I have 4 more injections weekly, but not sure what he will say after that. I think he was humouring me , but feel that it won’t be enough to turn things around. What should I be asking for after this current set of injections.

    • Hi Alison please see point 6 of this page – this will detail correct treatment which for you is every other day injections for as long as it takes for your symptoms to stop improving. http://www.b12deficiency.info/what-to-do-next/ I hope that you can point your GP in the direction of the documents here (which he will have access to in his own copy of the BNF) and make him understand the damage with could be sustained by under treatment. Wishing you all the very best Tracey.

      • Hi Tracey, Thanks for this. I have dropped in a letter to the GP with copies of NEQAS, some relevant pages from the National Guidelines re levels regarded as low, and the treatment advice in the National Formulary amd asked for treatment as per the guidelines. I have also printed a copy of an article by Martin Hooper which refers to ‘the sighs’, which I had not come across before, but realised was the exact description of what I have only been able to describe as ‘funny breathing’ which I have had for sometime, but thought was connected to my previous lumg injury. I also have more palpitations now than I did went I was very anaemic.

        I only dropped the letter in today so will await a response. Will let you know

      • Hi Tracey, I have not received a direct response from my GP, but looked on my records and he seems to be ordering injections every other day(though who is supposed to tell me I’m not sure) but he also seems to be suggesting another B12 serum test. I have had 2 weekly injection, last one on Wed. My understanding is that this would skew the result so there is no point in having a test as it would give a false result. Should I resist it, or point him to an MMA test, or just wait to see the effect on my symptoms. I don’t know whether he will have read anything more or just the stuff I sent him. At
        least he seems to have taken some notice

        • Hi Alison,
          For some reason I am not seeing alerts for comments on the blog so please use tracey@b12deficiency.info too.
          Sometimes GP’s re do the serum test to see that you are doing well on B12 and that you are achieving higher levels. Sometimes though, they appear to be using this second test as an excuse to ‘confirm’ that levels are replete and there is no need for further injections.
          I hope yours is the former.
          The point is that you don’t really require further testing, your GP has seen the NEQAS and should really be listening to the expert on your body and symptoms and that of course is you. No tests will give any indication of how you feel so I hope this is happening and that you are receiving B12 injections as per NICE Guidelines. All the very best Tracey

  2. Dear Tracy, I have now been diagnosed with a diaphragm paralysis on one side, resulting from my previous accident, which can account for part of my problems, and not much can be done, but it is usually manageable unless something overlays it. I have now persuaded the hospital doctor( a registrar) – listing my symptoms, that there might be other problems and he has ordered a range of blood tests including B12. He was surprised when I said that there was active and inactive B12 – had never heard that, so I pointed him to NHS Choices. Having just spent a sleepless night with aching legs, and feeling like I am walking round with lead weights attached to my arms and legs, I am hoping that something will come out of this. It is quite difficult to appear to be telling someone who is medically trained, about things you know more about than him, without sounding superior, and therefore getting up their nose!!!!!

  3. I live in the UK and am nearly 70. My sister in the US has just started B12 shots, picked up on a normal check up. When I looked online the symptoms I noticed most were Numbness and tingling in feet. I had been to the doctors with breathlessness and numbness and tingling in my feet. He referred me to our local respiratory team as I had had a lung injury previously, and did a blood test. When I had read the info online I went back to him. He had done a B12 serum test which came out as 152ng/l, which he says is within the normal range. He said peripheral neuropathy is very rare related to B12 deficiency and poopooed the notion that my breathlessness could be related, saying it was related to anaemia and I wasn’t anaemic. Everything I have read indicates that readings below 200 are considered worthy of further investigation. My breathlessness is worse. I cannot climb one flight of stairs without feeling acutely uncomfortable. My arm muscles ache and I have no energy. I have a follow up appt at outpatients following respiratory tests and a CT scan and am wondering how to raise this with the consultant, and if no joy there, what I say to my GP. I get on well with him, and don’t want to go begind his back, but would the best evidence to show him.

      • Thanks Tracey, I have seen what turned out to be a fairly junior doctor in relation to my breathlessness. He was a bit stumped, but has arranged other tests.
        He said he was not aware of breathlessness related to B12 deficiency.
        I feel like my symptoms are all.related
        I get breathlessness and muscle ache and heaviness in my arms and legs all together when climbing stairs and walking any distance. Is breathlessness only related to anaemia? And can you have B12 deficiency without anaemia. I am obviously going to have to write to my GP but uncertain about how much fuss to make on the breathlessness.
        I had the last test in July..It was not fasting as the receptionist said it was not necessary. I was also not taking Proton Pump Inhibitors regularly. I feel I have grounds to.ask.for another test. I can also argue that the test is only measuring active and inactive B12, but not sure whether there is a definitive lower level I can point out, and whether I can counter his notion that tingling and numbness in feet is very rare. Any more help would be appreciated

        • Dear Alison
          Breathlessness is indeed a symptom of B12 deficiency – see this comprehensive list http://www.b12deficiency.info/signs-and-symptoms/ you will find it under the haematological section. The list is from the book ‘Could it be B12? written by Sally Pacholok R.N. and Dr. Jeffrey Stuart

          Please see all the information below from point 4 here http://www.b12deficiency.info/what-to-do-next/
          4. Learn to interpret your test results.
          If you are symptomatic your serum B12 level could still show as ‘within range’ this test is known to be inaccurate. Click here to see the NEQAS B12 alert which explains about ‘false normal’ results and warns not to delay treatment.
          http://www.ukneqas-haematinics.org.uk/content/News.asp?id=46

          Read here from the NHS website – http://www.nhs.uk/Conditions/Anaemia-vitamin-B12-and-folate-deficiency/Pages/Diagnosis.aspx

          ‘A particular drawback of testing vitamin B12 levels is that the current widely-used blood test only measures the total amount of vitamin B12 in your blood. This means it measures forms of vitamin B12 that are “active” and can be used by your body, as well as the “inactive” forms, which can’t. If a significant amount of the vitamin B12 in your blood is “inactive”, a blood test may show that you have normal B12 levels, even though your body cannot use much of it. There are some types of blood test that may help determine if the vitamin B12 in your blood can be used by your body, but these are not yet widely available.’

          You could have a ‘normal’ serum B12 level but a Functional B12 deficiency is a condition which you doctor should investigate, please see below;

          http://www.nhs.uk/Conditions/Anaemia-vitamin-B12-and-folate-deficiency/Pages/Causes.aspx

          ‘Some people can experience problems related to a vitamin B12 deficiency, despite appearing to have normal levels of vitamin B12 in their blood. This can occur due to a problem known as functional vitamin B12 deficiency – where there is a problem with the proteins that help transport vitamin B12 between cells. This results in neurological complications involving the spinal cord’.

          http://www.nda.ox.ac.uk/publications/245043;d=RENO

          ‘We describe a case of functional vitamin B12 deficiency where the repeated measurement of a serum B12 level within the normal range led to delay in the diagnosis of subacute combined degeneration of the spinal cord, and possibly permanent neurological damage as a result….’

          I hope this page may also help you Alison – http://www.b12deficiency.info/b12-writing-to-your-doctor/

          • Dear Tracey, I wrote a letter to my GP with a list of symptoms and reasons why I felt my last test might be inaccurate (not a fasting test). He has texted me to say that my blood film test does not show any indication of B12 deficiency. He is emailing a haematologist with my details etc to see what his response is.
            I can see what the blood film test is supposed to show up, but unsure what it means and how accurate it is. Any tests are several months old now and my symptoms have been getting worse. I now have a dry mouth and odd taste in the mouth. I have also had a couple of bouts of restless leg syndrome which I have never had before, not sure whether there is likely to be any connection.I am very grateful for the advice you have given so far.

          • Dear Alison, your GP is probably not aware of the NEQAS report
            – which explains about ‘false normal’ results and warns not to delay treatment. “In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed”.
            You can find the NEQAS link and more info regarding the serum test here – http://www.b12deficiency.info/what-to-do-next/#Yourresultsandwhattheymean. Restless legs is a neurological symptom of B12 deficiency. Best wishes Tracey

  4. I’m 62. I’ve been sick for more than 10 years. I spent thousands of dollars in the US on every test imaginable–barium studies, swallow studies, naso-gastric tube to test for acid reflux while sleeping, pulmonary function tests for 10 years, endoscopies, colonoscopies, heart echograms, MRIs, CTs, blood labs, 24 hour urine studies, the list is quite long and so were the bills. One doctor even did a spinning chair study (like they do on astronauts in training), trying to find out why I was so dizzy and had loss of proprioception. That test cost $2000. I gave up on doctors last year.

    We were told that my mother had Alzheimer’s. She passed away in 2013 after a devastating 15 year decline. Looking back at all her ailments and symptoms over the last 30 years of her life, I’m pretty sure now it wasn’t Alzheimer’s. I think it was B12 deficiency. No one in her family ever has ever had ALZ. Her sisters are all alive and well, in their late 80s and early 90s. Her mother lived to be 98, sharp as a tack. It breaks my heart to know that my mother could still be with us, playing with her great grandchildren, working in her rose garden, sewing dresses for the little great grand-daughters, all of us enjoying holiday dinners together for many more years to come. We miss her so much.

    After I gave up on the doctors, I began to concentrate on finding a diagnosis on my own. I’m able to get labs and diagnostic imaging done in Mexico (where we live) without a doctor’s order. I have to pay for it all, but even without health insurance the prices are affordable. It was a hit or miss ordeal since I had not a clue as to what was wrong with me. I went down a lot of dead ends and did a lot of unnecessary blood tests and imaging before I found out it was all due to pernicious anemia. Along the way I also found out that I had severe hypothyroidism.

    I’m lucky because I can walk into any drug store and buy the B12 shots (hydroxocobalamin here), as well as my thyroid medication, with no prescription. Five shots cost around five dollars. My husband puts the shots in. He started a week ago. I’ve read different advise—some websites say once a day for a week, then once a week for 4 weeks, then once a month for life. Another website said once a day for a month, then 2 to 3 times a week for a month, tapering finally to once a month for life. I also started taking an iron supplement and a folic acid supplement.

    I have some permanent loss of feeling in one toe, and I lose total balance when my eyes are closed (like while shampooing the hair), and the brain MRI showed slight atrophy in the posterior cortical region. The bone marrow biopsy showed light suppression in all 3 blood cell lines—red blood, white blood, and platelet function were all impaired.

    After the first B12 shot, I felt better the very next day. The apathy and depression lifted almost immediately, the hopeless feeling is gone, and I now have the enthusiasm and energy to enjoy life once again. I’ve been sleeping all night, and the breathlessness is getting much better too. I can climb a flight of steps without stopping to rest halfway up. I’m going tomorrow for a CBC test to see if the hemoglobin count is improving. My husband said he now his real wife back, the one that he used to know years ago.

    • I am so happy you are feeling the benefit already and lovely to know your husband has his ‘real wife’ back. Your story is so typical of many patients who are left out in the cold with nowhere to turn due to ignorance of this condition.
      Regarding your treatment, in the UK we have NICE Guidelines http://www.b12deficiency.info/what-to-do-next/#Correcttreatment-loadingdoses which state that with neurological symptoms you should have an injection every other day until those symptoms stop improving. There is no time limit on this and only you will know when you can cut down. I do well now on a weekly injection but can’t really go longer than this.Thank you for taking the time to write!

      • Thank you so so so much for the link to the treatment plan. It looks like I will need every other day shots for a long time as I do have significant neurological involvement. And then probably once per week, as you are doing. Thank you so much for this information. I got a check-up CBC and the hematocrit is up but the hemoglobin is still below normal, but not by much. There are no labs in our city that do the methylmalonic acid test but I think in the next big city (about 2 hours away) they can do it. The hospital lab there will send these less common blood tests off to a reference lab in the US for analysis. I do worry about proper protocol in processing as well as the handling while in transit though. I used to work in a lab and I’ve seen samples drawn into the wrong colored tubes on quite a few occasions. In fact just yesterday they did it, so I cancelled that particular test and got my money back! Thank you so much again for the information about the correct treatment needed.

  5. Hi my name is Jane and I am trying to help my Dad with his vitamin B12 deficiency. He was diagnosed 2 years ago he is now 75. He is diabetic and they found it when he was having a check up. He had been complaining of being tired for a few year but thought it was just getting old. The doctor gave him 7 injections over 2 weeks and from them on every three months. My dad can not concentrate, can not remember what we have just been talking about and can not do his garden which has always been his passion. I told his wife to go back to the doctors, which she did, they offered her rest bit care! I have a friend with the same condition, my dad is unable to absorb the B12 through diet. She has given me lots of help. He is now on patches which seem to have helped. He is now working in his garden and not repeating himself so much. I would like to give him injections but don’t know where to get them and what dose to give him. Can anyone give me advice on where to start. I have also read that you absorb the B12 through the bowl wall? Is this true? If it is it would explain a lot as when he was 5 years old my Dad had a large part of his bowl removed. I don’t know if the doctors would even know this as it was so long ago. Hope someone can help, I just want my Dad back. Jane

  6. I agree with the above comment that this condition is so horrendous. I also think its a sad state of affairs that people end up having to diagnose themselves.

    I have been symptomatic for B12 deficiency for over 15 years with minor symptoms prior to that, still don’t have a diagnosis and have lost faith that I ever will.

  7. I have pernicious anemia. Thankfully, I diagnosed myself when I was 28. I had all the symptoms and my great aunt has pernicious anemia as well. I get a B12 injection EVERY MONTH! I live in the US. I don’t understand why you would only get 4 shots a year. I can tell about a week before my shot that my body needs it too. I also get my blood counts checked every 6 months.

  8. Good article! Got married at age 36 for first time and husband said he thought I had chronic fatigue our entire marriage, just never appropriately diagnosed even though I had complained about not as much energy as others all my life to medical providers. And I still pushed myself to buy my own home as a single female, and obtain several degrees while working full time and going to school, which took quite a while. Unfortunately, I was reared by an RN mother who taught me to revere medical professionals, erroneously. I now believe that too much of the reverence for the medical profession is based on the Cult of Personality, rather than actual medical knowledge. And, yes, medical professionals can be sadistic. To Bonnie: some of us have been so deficient for so long and our bodies need the injections to make our lives worth living. I personally do not do well on methylcobalamin or cyanocobalamin, either injected, SL or otherwise. Hydroxocobalamin injections seem to be the best for me at this time, as evidenced by alleviation of many symptoms as well as supported by genetic testing/counseling….at my age, I no longer have any time to waste….age 57 is just way too late in life to be the first time to experience an ongoing sense of well being and that life is finally worth living…no thanks to the US medical profession…

  9. Well the first comment kind of reminds me of the arrogant misinformed doctors that people come across.. I like the way she says “we do not need the injections” she sounds like the doctors who say “take a pill love, you’ll be right.”
    She obviously hasn’t read the book properly or she would know that not everyone can just go and buy B12 injections over the counter in some countries and not everyone can survive on just sublinguals. And the whole point the book was written is to bring attention to the fact that most of the medical profession are unaware of the life threatening possibility of going without proper B12 treatment….. She totally misses the point of this post. How dare she say “WE DONT NEED INJECTIONS???? How dare she include everyone in her statement, how dare she include me?? for one she knows nothing of me and I gather she knows nothing of pernicious anaemia . It seems all she knows is a few sentences she has gleaned from a book – and those sentences are pertaining to her particular cause of B12 deficiency and how she can treat it.. maybe someone else with more patience who has been lucky enough to have adequate B12 will have the energy to explain it to her fully, but she totally rubbed me the wrong way, I hate arrogance it’s the worst kind of stupidity.

  10. There is a difference between being b12 deficient and pernicious anaemia. With PA your body does not absorb B12 in the normal way. Sublingual will help to a degree but not enough to help you function. Pat would be able to explain this better that I can. I just live with the dreaded complaint.

  11. Hello:

    I don’t understand why anyone needs to be B12 deficient, when this vitamin is available in every health food store in every town and city that I’ve been in? Would someone please tell me?

    Around 2011 a book was published called “Could it Be B12?” by Pacholok and Stuart, where I learned so much and it explained why I had such a low level of B12, from taking Metformin for Diabetes. Also I have since learned that we don’t need the injections, when we have the sublingual form of Methylcobalamin. I also use a spray called Black Bear Energy spray which contains Adenosylcobalamin and Hydroxylcobalamin. There is no reason to be Deficient.

    If I wanted to give myself injections, I could go to a Pharmacy and buy the injectable form and give it to myself, every week, just like a Diabetic would. So once again, there is NO REASON WHATSOEVER to not have B12 available for yourself, to take at your own schedule.

    Bonnie

  12. This disease is so horrendous when you do not get the correct treatment. I’m treated a lot better than most with injections every five weeks but everyone knows when I need a boost. My temper is evil and my inability to function is dramatic. My next injection in not due until 18/8 and already the lethargy has started. It would be wonderful just to manage everyday life which at the moment I struggle with.
    I commend all those who self inject and hope I will some day be brave enough to do this. The sad thing is we shouldn’t have to self treat we deserve to be treated correctly.

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