Doctors in the morning!

These are my blood results, I've been given some good advice to ask. Do you think I have a good case for low  B12 to be investigated? 

I'm thinking of asking to see a gastroenterologist due to me having h pylori as I know this is a cause of low B12. 

I was more concered as I have a big drop in my b12 levels or is this normal?? 

My serum B12 in 2009 was-

448 ng/.l      172-1162 ng/l

Serum B12 now is

263 ng/l    172-1162 ng/l

I also had these flagged as abnormal but satisfactory on my FBC

Total white cell count

3.6 10*9/L.          4-11 10*9/L

Mean corpusc haemoglobin MCH

31.7 pg.          26-31 pg

Neutrophil count

1.8 10*9/L.         2-7.5 10*9/L 

I'm not sure if this helps to investigate what I think is low B12?? 

26 Replies

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  • I was concerned about a similar drop in my b12, it was 456 December 2014 and ferritin was found to be very low. After supplementing with iron, 9 months later it had dropped to 261. I wondered if it had something to do with supplementing iron, but I asked  on Dr Chandys website and they said that the 456 was quite possibly a false result as the test is not very reliable. A few years ago I paid for a private test and it was in the low 200s then, so most probably was the case. Like you I also had MCH just above range and flagged, which is again a sign if B12 deficiency but the Dr felt I had ample B12 and it was not causing any of my symptoms.

    Eventually! he agreed to refer me for an Active B12 test and this came back bottom of the range, and referred for an MMA test which was 400 over the top range ( bearing in mind I'd asked about an MMA test and was told I wasn't ill  enough for one) so have now had 2 weeks loading dose and trying to get a third week!

    So from experience I can say yes most definately keep pushing to get this looked into. I was tested for HP a few months ago my first result was equivocal, the second negative, so I'm looking for other causes now, but having just read Martyn Hooper's excellent book, HP is definately a cause of B12 deficiency, so hopefully your Doctor will recognise this.

    Have you had treatment for HP during the time the B12 dropped and have your symptoms worsened in that time? What symptoms do you have? Sorry haven't read any of your other posts...

    Hope you get on well at the Drs tomorrow...Jo

  • I've tried and failed the h pylori treatment due to severe side effects.

     My symptoms are severe fatigue, my arms and legs feel like lead! IBS like symptoms, numbness in fingers and toes. I do have raynauds but the numbness is happening even when I'm not cold. I've being feeling very low. 

    I'll see how I get on tomorrow. Did you get the active b12 on the NHS? I was thinking of paying for it. 

    Thanks for your help :-) 

  • I replied to you a couple of days ago about having your thyroid tested as your symptoms do overlap with the B12 ones .... any thoughts ?

    Hope all goes well with the appointment ....

  • I'm going to ask about thyroid, I've written a list! Thank you for help. 

  • If they just do the TSH it will not be much help - you will also need the FT4 and FT3 tested.  Also thyroid anti-bodies - Anti-TPO and Anti-Tg.

    thyroiduk.org.uk/tuk/about_...

    Everything you need to know about the thyroid.....

  • They won't do the full thyroid as my TSH is fine, why is everything so difficult!! 

  • The TSH test in isolation tells you very little.  It is not a thyroid hormone - but comes from the Pituitary Gland and tells the thyroid to produce T4 - so how do they know if your thyroid is producing the required T4.  Private Testing is available ...

    thyroiduk.org.uk/tuk/testin...

  • My sister is looking into this at the moment. She was diagnosed with CFS 5 years ago but has researched could be thyroid. The doctors have refused to test so she's going to have it done privately, looks like I'll be joining her! 

  • Maybe your sister would be helped by looking at the website of Dr Sarah Myhill who has written a book about CFS.  Her website is full of information for every condition.

     I was diagnosed with Fibro in 2000 and Hashimotos in 2005.  Fibro symptoms have disappeared as the thyroid treatment has improved and I have learned so much about B12 - VitD - and how to understand thyroid testing and the results.  If you type CFS into the Search Box at the top of the page you will see how often the topic is discussed on Thyroid UK.

    I live in Crete so we can have whatever we want tested - so no surprise that I was diagnosed here at 59 - with Hashimotos after struggling for years. 

    If you need help with your test results you can always pop across to the Thyroid UK forum where there are lots of helpful people - just like the people here.

    it is a scandal that Docs no longer have the time to listen to patients and find the root cause of conditions.  Treating just the symptoms seems to be the norm sadly .....

    healthunlocked.com/search/c...

  • Hi, did they offer you any different treatment for HP? I don't know much about it, but have read that other members on here have tried different combinations of antibiotics if their bodies haven't been able to tolerate some kinds. My Doctor did warn me that the treatment can make you feel worse than the HP does, as the hosp had said I could have treatment after the result came back  equivicol or retest, so he suggested the retest! Since then I've read that the result can read lower if you are avoiding dairy and gluten, which I was at the time, so not really convinced as to how accurate it was now! Other members on here can give you plenty of better advice in that area.

    I discovered the Active B12 test on here! It was via St Thomas's in London, an NHS hospital and costs £18 if you can attend or £30 if done via a postal test. It needs a Doctors referral and the results go back to Docs although definately ask for a printout if results!

    Blood has to be taken late in the day, I had mine at 4.30 to catch the last post as it needs to arrive in a certain time. If your result is between 25-70 it gets referred for an MMA test.

    I converted my result to pmol which came out at 192 and had been told Active B12 is usually between 10-30% so thought my result could possibly be somewhere between 19-57 going on those predictions and yours is similar to mine, therefore could go on to an MMA test. Bearing in mind we are all different and I'm only just learning about this, but all I can say us this route has finally resulted in me being given some injections. My Doctor has refused to believe that B12 is a problem for me and I've been I'll for a very long time, so at last this has convinced him, I hope! Any other questions about the test, please a ask!

    Good luck this morning, look forward to hearing how you get on...Jo :)

  • Just reread this and meant that I did that last paragraph, converting my result etc, prior to taking the test. Realised it could sound a bit muddled, I accept I'm confused a lot of the time, but don't want to confuse others too! Or maybe it reads quite logically and me just trying to figure it out is too difficult, haha! Yes, and that's me after 6 injections and the doctor isn't convinced I need more??!! :) 

  • Is this a blood test for h pylori you are discussing?

  • Hi Allyson

    I was talking about the Active B12 test but did mention I've had 2 H pylori tests, they were stool sample tests. Mine came back unequivicol- was told that is somewhere inBetween negative and positive? Then on 2 nd testing negative.

    Is there a blood test to h pylori? I'm sure there's some kind of breath test too. Jo :)

  • Thanks!

  • There is a blood test for h pylori as I've  that's how I was diagnosed previously. I'm doing a stool sample this time though. :)

  • That's handy to know thanks. Was it available from your Dr?

    Thanks

  • Yes, but I think the GPs use the stool sample as its more reliable. 

  • Those symptoms sound very like mine with low b12...how did you know about h pylori and can I ask what the side effects of the treatment were?

  • I have read that High MCH can indicate the possibility of macrocytosis (enlarged red blood cells).

    patient.info/doctor/pernici...

    patient.info/doctor/macrocy...

    patient.info/doctor/full-bl...

    labtestsonline.org.uk/under...

    patient.info/doctor/folate-...

    Do you have  a result for MCV (Mean Corpuscular Volume) on the full blood count (FBC) also known as Complete Blood Count in USA.

    Do you have results for ferritin and folate? Low iron can lead to smaller red blood cells(microcytosis). Low B12 and/or low folate can lead to enlarged red blood cells (macrocytosis). A person with both low iron and low B12and/or low folate may appear to have normal size red blood cells . A blood smear aka as blood film may show both macrocytic and microcytic cells in someone with both conditions.

    patient.info/health/full-bl...

    patient.info/doctor/periphe...

    H Pylori

    patient.info/doctor/helicob...

    UK B12 websites

    b12d.org

    pernicious-anaemia-society....

    01656 769 717

    b12deficiency.info/

    martynhooper.com/

    UK B12 Documents/articles

    ukneqas-haematinics.org.uk/...

    bmj.com/content/349/bmj.g5226

    Google "BCSH Cobalamin and Folate Guidelines"

    Useful B12 books

    What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency by Martyn Hooper.

    Martyn Hooper is the chair of the PAS and has written several books about PA and B12.

    Could it be B12?: An Epidemic of Misdiagnoses by Sally Pacholok and JJ. Stuart

    I am not a medic just a patient who has struggled to get a diagnosis.

  • I got nowhere! Offered me a h pylori test which I know will be positive and said my b12 was in the range so couldn't possibly be that causing me symptoms. I asked him about thyroid testing as well but basically was made to feel as though I was wasting his time. 

    Do you think I should start with b12 supplements or go for a private active b12 test? 

  • Oh no, have been hoping you'd get on well...grrr. I personally would definately try for the Active B12 test first, as it made the difference for me as to being treated or not and our results are very similar.

    My Doctor has told me no end of times he doesn't mind if I try supplements and in the past I have had B12 in multivitamins in pretty high amounts I realise now, under nutritionists and had my diet assessed by nhs dieticians because of low weight and digestive problems- they estimated I was eating 570%b12 daily! but for me it obviously wasn't enough as over 17 years I've become more and more ill. The advice on here and this test has been a saviour to me in trying to move forward, my Doctors lack of understanding in this area and failure to look into it further has not! Don't rely on it!

    I'm really sorry you didn't get the help you need, but I suggest you read everything you can about this, get the info together and get back to your Doctor again. I offered to pay for the referral letter ( but he kindly didn't charge) surely got to be worth a try?

    Take care Jo

  • Thanks Jo, 

    I'm going back next week to get the h pylori results so going to ask for the active b12 test then. 

    Are you feeling any better for starting the injection? 

  • Hi thanks for your reply. I hadn't really noticed any difference until the 5th one when I briefly felt a little clearer headed for a couple of hours, but when I announced it to family they said they hadn't noticed and I'd still done some daft things!:) definately felt I had more energy after the last one, which is why I was desperate to continue with a 3 rd week, which would have been yesterday due to what I feel are neurological symptoms, but no go, but I can have another one in a month and have been referred to the local hospital now, seeing as I have low iron, vitamin d and b12, eat well and lots, but still have a low bodyweight. St.thomas helped and recommended I do this as it could also help determine whether I will need more b12 or not in the future.

    Hoping everything goes well for your appointment in a fortnight...:)

  • Hi Otes73,

    Are you in the UK?

    The UK documents I gave links to in my above post make it clear that patients who are symptomatic for B12 deficiency should be treated even if their B12 level is normal range. I have in the past copied relevant documents and given them to my GPs along with a copy of Martyn Hooper's latest book.

    Symptoms

    What symptoms do you have? links to B12 deficiency symptoms lists.

    pernicious-anaemia-society.... See Symptoms Checklist

    b12deficiency.info/signs-an...

    PAS

    Are you a member of the PAS? Lifetime membership costs £20.

    pernicious-anaemia-society....

    01656 769 717

    Link below is about writing to GPs etc when unhappy with B12 treatment.

    b12deficiency.info/b12-writ...

  • I've just joined the PA society.

     I have another appointment in 2 weeks to get the h pylori results and going to take with me the relevant documents you've kindly recommended. I'm also going to take my husband as for some reason I went in with great intentions of getting somewhere but every time I mentioned any symptoms I was told "your in the range" or "under 300 isn't low" and I lost my way! 

  • Good idea to take someone with you especially if they have read up on B12 info. I'm a bit wistful as I don't have anyone willing to come with me.

    I found page 29 in the BCSH Cobalamin and Folate Guidelines particularly useful and I take a copy of the BCSH Guidelines with me when I have an appt...with relevant passages highlighted.

    My experience is that sometimes medics behave more kindly when there is another person present and it can be useful to have a witness.

    useful links

    b12deficiency.info/b12-writ...

    b12deficiency.info/what-to-...

    I gave my GP a copy of Symptoms Checklist in PAS library section with my symptoms ticked.

    pernicious-anaemia-society....

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