Dr says stop trying to find answers

I have just been to the dr to find out what to do now after my neurology results. He is retesting my ANA and anti intrinsic factor as ordered by the neurologist and haematologist. Other than that he has told me to stop hunting as there is something but I have to accept they can not find out what it is and would not be able to treat it if they did. He has said continue with 8 weekly B12 injections. He said he cannot do much as my levels are normal and I said for this trust ye but others not so and he then accused me of trying to manipulate him and force him to do something about something that he considers normal. Hubby is furious that he said this. As for my degree and my fatigue he said if you are struggling then take time off your course. I did point out that the neurologist has said my symptoms are due to incomplete B12 replacement and he said that is his opinion and the haematologist (that has refused to even see me) said the symptoms are not due to B12 def.

It seems I have reached the end of the line, nobody wants to help.

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30 Replies

  • That's so annoying.

    You seem to be in a similar situation to mine, except that my GP is willing to listen to me and my neurologist. Can you ask to go back to the neurologist to see if he can look for some answers alternative to B12 if (s)he seems helpful?

    All my medics are convinced that my neurological problems aren't B12-related. The haematologist thinks they're psychosomatic, or due to my diabetes (which is getting under control). By neurologist thinks that they're autoimmune - and wants to find out exactly what's doing it.

    I was so convinced by them, and by the fact that my fatigue seems to be no longer improved by weekly B12 jabs, that I stopped them - for 12 days. That's when my friends persuaded me that I need to restart.

  • I am glad you have a neurologist willing to fight your corner and get to the bottom of it. That appears rare in the world of B12 def.

    The neurologist was good but has said he does not want to see me again. I had to badger the GP to get the original appointment.

    I forgot to say my MMA is normal, at the lower end of normal. I asked the GP if the lower end of normal is normal when on B12 injections and he said I don't know, but would not investigate further (the GP does not know I was injecting every other day at the time).

    My ANA is abnormal which suggests something autoimmune is going on, so he is retesting it, but all other bloods are normal so they will not do anything. They look at figures on a screen rather than holistically at me and consider my symptoms.

    I changed surgery because I was told this surgery is more understanding of B12 issues but clearly this is not the case.

    I was self injecting but have stopped.

  • You could ask to retest IF antibodies, or ask to have gastrin tested. The IF test is very insensitive and loads of us test negative at first, but positive when repeated. But other than that, for the treatment is does not matter so much what the cause is. Problem is you are not getting enough. Can't the neurologist prescribe them or call your GP to explain?

  • IF is being retested but I have been refused anything else point blank. I should just accept it and move on.

  • almost gonna say 'fingers crossed that it's positive' Ridiculous of course that you need an official 'stamp' to just get some B12..

  • kind of hoping for a psoitive result - it will give me a reason for this feeling crap and will mean I can say told you so as they keep saying you do not have pa.

  • I don't officially have PA (just tested once years ago). A B12 def is reason enough to feel (really really) crap, regardless the cause. The problem is that some docs (or a lot in the UK apparently) think only PA is serious, and that's why you need the 'label' sometimes (ok and to get a gastroscopy but had that anyway)

  • I have not had a gastroscopy - the gastro reg refused to test me for anything except the stool test for crohns (which I had to tell him about).

  • Serum gastrin is usually markedly increased in pernicious anemia (as a result of gastric atrophy) so can also be tested to confirm PA.

  • A bit more about gastrin.

    When you eat food the body produces gastrin. This is a hormone that stimulates Gastric Parietal Cells to do their thing - including making hydrochloric acid. This acid lowers the pH of the stomach, which prompts gastrin secretion to stop. At least that's what's supposed to happen.

    People with PA don't have a lot of GPCs so they don't produce much acid (achlorydria). That means that gastrin production doesn't get switched off, resulting in high levels in the blood - hypergastrinaemia. So serum gastrin is a good indicator of a problem with GPCs.

    Another functions of GPCs is to produce Intrinsic Factor - the protein needed to properly absorb B12! So hypergastrinaemia, in cases of low B12 is a good indicator of Pernicious Anaemia.

    High levels of gastrin also prompt the stomach to make more GPCs. But if these are getting killed off by the immune system then other types of cells will be produced - the Metaplastic bit of Autoimmune Metaplastic Gastric Atrophy.

    Sometimes this overstimulation of cell growth in the stomach can lead to gastric carcinoids (aka Neuroendocrine Tumours, or NETs). These are fairly innocuous little beasties and fairly rare. I am, apparently, one-in-a-million as NETs are much rarer in males. My 'treatment' is for them to have a look once a year.

    But it's a good reason why people with PA should have at least one gastroscopy with biopsy samples taken.

  • Yep, that :)

    They (the powers that be..) ) even say gastroscopy every 2 to 5 years for all PA-patients.

    In short: when PA is suspected and ab IF and PC are negative, test gastrin as it is raised in 85-90% of PA.

  • This is really helpful info. Thank you.

    Does it mean anything if your serum gastrin levels are low? Would a low level conclusively rule out PA?

    I don't want to hijack this thread, but I am very curious.

  • Not rule out 100% as it's raised in max 90% so you could be the 10%. Also, hypothyroid as far as I remember lowers gastrin.

  • My goodness, I've never had a gastrin test, only anti-GPCs, (strongly +ve) way back when. Never been scanned for SCDSC either...

  • Here's a good, if complex, paper that really explains NETs.


  • He said he did not want to overdose me on b12 so if I told him i had self medicated he would say I had made myself ill. I did say it is water soluble and excreted in urine etc but he said nothing to that (not sure if that meant he was trying to end the conversation or knew I was right).

  • for your doc ;) stichtingb12tekort.nl/weten...

    But yes, sounds like he knew you were right, classic reaction.

  • Apparently the ANA test is almost as unreliable as the anti-IF, so I wouldn't worry about that until the restest results come back.

    You docs are going to assume what mine do, normal MMA means that the B12 in your blood is getting into the cells and doing what it is supposed to do once it gets there. And I had to agree with them.

    But that ignores the fact that thee and me (and many others) respond to B12 administration at a much higher frequency than that recommended. The fact that they don't know why, and we don't know why, doesn't change that fact.

    If asked to speculate I would guess that B12 is involved in something other than the methionine synthase and methylmalonyl-CoA mutase reactions that is all that we test for (the Hcys and MMA tests, respectively). And that one of these other processes, known or unknown, is kaput in a small number of people.

    If I were Bill Gates I'd love to run a metabolomics study looking into this. (Although I would buy an Aston Martin first - I'm not totally geeky).

  • IMHO, the Aston Martin would the stranger option here. If you win the lottery, I'm making an advance request that you set up that study.

  • See: stichtingb12tekort.nl/weten...

    Test 1 = serum B12 (or active B12) and based on the result you test more. If B12 is not clear, then MMA (and homocysteine) If clear, test antibodies and start treatment.

    Just wait for these results first, they only take a couple of days. Then see what you do next.

    re iron deficiency: you take iron so your ferritin is treated. I assume the GP will test that as well to see if the anaemia is resolved and iron levels are better/good?

  • Missed this one. The MMA was tested after you started injecting? Then it was useless. Results does not give any info. Did you feel better with more injections? Did you try giving your GP some info about more B12? Did you say you were taking extra?

  • I know the mma was useless as I was injecting but they won't listen but the fact that it was still the lower end of normal screams warning signals to me - I was expecting ti to be very raised. I was self injecting every other day until May but then gave up as I was not seeing further improvement and the fatigue did seem worse (but maybe that is a coincidence).

  • MMA is supposed to be low when injecting, so that's 'normal' that yours was low. No further improvement means there was imporvement before? Then try and get back on at least a maintenance regime, and check folate, ferritin and other 'suspects' if fatigue worsens while on enough B12.

  • MMA and homocysteine are nasties from two essential processes (as mentioned by fbirder above) that build up if there isn't enough B12 (or folate in the case of one) to complete the process and recycle them back into the chemicals that are needed at the start of the processes so if you are B12 deficient these will build up - ie high levels are associated with a B12 deficiency.

    There are other things that could cause them to be high which is why looking at the two is a test to clarify rather than a test to identify a B12 deficiency.

    Personally I can't see any reason why it couldn't be the case that your body prioritises where it is going to use B12 and for some people that might mean dealing with MMA/homocysteine in preference to dealing with something else - if there are problems with the nervous system and signals are getting scrambled that could be even more skewed. That's not scientific fact - just speculation on my part. Might even be the case for most people - after all if blood/oxygen is short then there is a definite order for shutting down and prioritising where the blood/oxygen goes to.

  • Potassium is only really a problem when there is anaemia/low RBC. But just try and get your injections back first (starting with loading dose again) and get your blood teste for some things (folate, ferritine, (B1/6 possibly) and vit D, you could trow in potassium when you go anyway, and then go from there with the results.

  • My neuro did lots of blood tests for dif fervent auto immune conditions and scanned my head and cervical spine for changes (sub acute combined degeneration, MS, srogrens)

  • Not sure I can do much but wait for something to come back positive or for things to worsen, as they have shut down to all info from me. I will continue with my injections at the surgery every 8 weeks and continue with folic acid, vit D, magnesium, K2, and b complex.

  • That's such a shame about your GP, but I think your supplements are the right way to go. You could try self-injecting - not clear if that's something you've tried? One injection every 8 weeks sounds too infrequent to me. Also, you could try methylfolate instead of folic acid, just in case it helps.

  • I was si for 5-6 months

  • Been there, done that! You have my heartfelt sympathy.

    I self inject daily and take lots of the cofactors required. I'm much better than I was a year ago and continue to improve.

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