Confused about what should a be concern

Hi.

First the tests:

My mother has pernicious anemia and has regular b12 injections.

I had a Homocystene blood test earlier in the year to investigate heart disease risk factors. It was 16.7.

From that I mentioned my mother's diagnosis and had a b12 test. It came back as 219 (not sure of the units 148 was the bottom of the normal range). The blood test had a comment stating that if deficiency was suspected active b12 could be measured.

I had a sleep study which showed nothing unusual.

White matter lesions on brain mri (attributed to headaches).

Now some symptoms:

I have been fatigued. At worst I have begun to collapse when falling asleep standing up and have fallen asleep while driving.

In a recent physio session I have been referred back to my doctor for drugs to deal with neuropathic pain.

There are other things going on that could be anything. Headaches, unfulfilled yawning (especially when exercising), strange sensations, joint pain (which has been tentatively labelled as inflammatory arthritis).

Other info:

I am 44 and live in Australia.

I have been diagnosed on the autism spectrum and have dealt with ongoing depression and anxiety.

Diagnosed with irritable bowel syndrome. Gluten seems to be a problem for me.

B12 deficiency?

I straight out asked my doctor about b12 and she said that I am not anemic. (Blood tests regularly show mild neutropenia and high billirubin but nothing else). She became angry that I was questioning her and stated that she is a GP and cannot be expected to answer these questions. She can only work from the test results which showed that I am fine.

I do not know if I am being irrationally concerned about b12? What to do next? Frankly the fatigue and nervous system problems that the physio is telling me to get medical help for are extremely concerning.

Any advice is welcomed. Thank you.

10 Replies

oldestnewest
  • Hi digitalme ,

    Your serum B12 is not high and with your symptoms, it would be good to have the active B12 test done, and if that is not conclusive but low, MMA, as recommended, re:"It came back as 219 (not sure of the units 148 was the bottom of the normal range). The blood test had a comment stating that if deficiency was suspected active b12 could be measured. "

    I hope this helps,

    Kind regards,Marre.

  • Sorry that your GP has behave the way they have. I definitely don't think you are being paranoid and would say that your test results, given symptoms, do warrant a trial of B12 treatment.

    B12D isn't anaemia - anaemia is a possible symptom of B12D. Unfortunately a lot of GPs really don't understand this. A large number of people present with neurological problems - which include depression and anxiety as well as balance, tingling in hands and feet etc.- long before any anaemia develops

    Your B12 levels, as Marre says - are definitely in the grey range - where significant numbers of people show clinical signs of B12 deficiency. Gut problems are also frequent ... and can make the situation worse if not recognised as early signs and treated with anti-acids which can impair absorption of B12 further.

    There isn't actually a good test for B12 deficiency. In the UK the recommendation, as a result of this, is to treat on the basis of symptoms not test results (something it sounds as if your GP won't be prepared to look at which is rather sad but just in case it is of use this is a link to details of the NICE guidelines on B12 Deficiency in the UK.

    cks.nice.org.uk/anaemia-b12... - the section on B12 gives some practical guidance on why interpretation of Serum B12 just on basis of numbers is (for want of a better word) wrong.

    Also link to BCSH guidelines - summary may be useful

    bcshguidelines.com/document...

    You might also find it useful to get hold of a copy of Could it Be B12 by Sally Pacholok and may be give it to your GP to read ... though I think from the reaction you describe that you might actually be better off looking for another GP - although there is no guarantee that you won't get the same reaction from them.

  • The minimum limit in Japan is 500 pg/ml. Here in the USA the labs add the following caveat when B12 results are below 400 pg/ml. "10% of the population exhibits neurological symptoms when results are below 400 pg/ml."

    Your Australian GP will probably sneer at these foreign references, I had a similar response from the GP when I lived in the UK.

    you have neurological symptoms and the anaemia is typically the last thing to appear. The GP is probably following "guidelines" which focus on the anaemia and not the neurological symptoms.

    That said, I typically get sleepy about 24 hours after eating gluten or dairy tainted food. The other symptoms are foggy head which clears up after a bout of diarrhea.

    For trying to convince a stubborn GP to expand their reading further than their computer screen and the guidelines, I typically recommend what worked for me.

    Keep a daily log book/ journal / diary / excel spread sheet, what ever works for you. Record the time of your food and meds and also all your symptoms. If you start on B12 treat the jab as day zero each time and see what symptoms repeat.

    I get a soft poo symptom about 12 hours after my injection. It is similar to the symptom of gluten or casien protein (dairy).

    Show your log to your GP and invite him/her to include a copy in your file. Stress the neurological symptoms .

    Good luck, Paul

  • You also have to remember that in 20% of patients anaemia never appears. Their neurological problems simply get worse and worse.

    Although the anaemia or haematological indicators in general, come last in the chain of events, it doesn't really mean much in the big scheme of things.

    The interpretation of 'anaemia comes last' is rather misleading to both professionals and patients alike. It leads you to think that a person who has had the anaemia identified has run the full gambit of neurological symptoms which has then progressed to a 'severe' anaemia.

    In actual fact it is quite likely the opposite is true.

    It is quite difficult to explain but look at it this way:

    The cells in your body become damaged due to B12 deficiency. This damage is becoming apparent in your neuro symptoms, it 'should' also become quickly apparent in your blood cells which 'should' show up in blood test results.

    The neuro damage and the blood cell damage are not weeks, months or years apart. They are separated only by days.

    So back in the 'ideal' world, you start to get damage, your neurological problems are minor if at all evident, but your blood also changes producing the fatigue etc. You nip off to the doctors, they take blood samples, they see the anaemia, and 'voila' you get your diagnosis and your treatment.

    But for many people the blood cell damage does not show in blood test results. This may be because other factors are skewing those results. Remember also that these days lab technicians are not looking at your blood, they are simply 'measuring' it. And those measurements only incorporate certain factors. If other, skewing factors, have not been incorporated, then they will not pick up on possible problems.

    So the person who feels fatigued (and that is usually why most patients go to doctors) and gets the anaemia identified straight away, will have the damage limited. Whether they are getting enough treatment is, of course, open to debate.

    Then you get the 20% people. They get fatigued and nip off to the doctors but their blood shows nothing. For the majority this means they won't even get a B12 test.

    Their neurological damage continues unabated.

    The go back to the docs, they take more blood - still nothing.

    The patient is considered hysterical or has investigations for other issues.

    Meanwhile all this neuro damage is degenerating to the point it is becoming irreversible.

    At which point the patient becomes 'lucky' and the anaemia appears in results or someone decides to check B12 levels, can never be judged.

    So, that is how you get someone who has had severe neurological damage overlooked simply because they didn't have 'anaemia.' And how talking about anaemia as 'end stage' can be quite misleading. Yes, it does come at the end of the process but for many people it is the first thing to be identified and remedied. Those who don't get it identified will suffer the worst of the neurological damage.

  • I'm gluten and casein intolerant. I don't know whether the intolerance or the B12D came first. I think I noticed the issue with milk about the same time as getting the B12D diagnosis. The gluten was never officially diagnosed but after recommendations ftom PAS, I went gluten free and a lot of symptoms disappeared.

    Looking back, I think the gluten issue was probably there first but, like typical allergies, small amounts every day was building up a sort of tolerance. The underlying damage to the gut was continuing and the absorption issue for B12, and probably folate, continued to get worse.

    I have always notice I get a benefit from eating beef so I still absorb some B12 in my gut.

  • Thank you for your comments. What I shall do is go back to a doctor in the same clinic with the referral from the physio and ask that the B12 be ruled out before accepting other treatment. Have the active-b12 check and probably an update of the standard b12 (it was about 6 months ago that my initial tests were done). I would prefer to undergo a trial b12 treatment within the medical setting as they are likely to test me along the way. However, if results are still borderline and no trial is forthcoming from the doctor, I shall trial b12 for myself and monitor my symptoms. As I understand it, a suitable personal trial would be high dose b12 tablets along with a b-complex.

  • Personally I think you would be better off taking in a copy of the BMJ article. That explains things to doctors in better detail. Plus the journal is recognised and valued worldwide, it is not UK specific.

    This will show your doctors that there is no such thing as a 'borderline' B12 case. Even the active B12 test has a grey area.

    It may well be that it triggers them into recognising that your symptoms are typical of B12 deficiency, your levels are certainly not conclusive to ruling it out and that people such as you should be given B12 immediately to prevent further neuro damage.

  • Which is the BMJ article?

  • If you go into Google and tap in:

    PDF BMJ Vitamin B12 Deficiency Hunt

    You will, under the heading 'cmim' (I think, I forget this all the time) find the full paper.

    This is a clinical review that was published in the BMJ (British Medical Journal) back in September.

    It can be viewed online at the BMJ site but you only get the abstract if you aren't a member.

    It's causing quite a stir because it's giving a lot of information to doctors relating to what B12 deficiency really is, as opposed to what they believed it was. It's also telling them that none of the tests will accurately establish if a patient has a true B12 deficiency. It focuses quite a lot on permanent damage also - personally I like the bit that says patients need 'rest.' Couldn't stop laughing at the bit - since most of the dumbo people I've spoken to in the last five years thought 'working harder' would improve my muscle damage.

    All it's done is nearly cripple me.

    Make sure you put PDF into the search because I don't think you'll find it any other way.

  • I found this article from Sullivan Nicolaides Pathology - one of the Australian blood testing organisations.

    snp.com.au/media/328667/ite...

You may also like...