Advice before apt with doctor tomorrow please?!

I was 2 weeks overdue for my recent B12 injection and I saw a new nurse. She spoke to a doctor and advised me that they would not give me the injection without checking my B12. The B12 level has come back as 'normal' so they have decided to cease my treatment. I have asked to speak to the doctor and have an appointment tomorrow morning. I have been told by previous doctors that I have pernicious anemia and will need the injections for life. Why would they now change this diagnosis? Could I have been misdiagnosed? What information would you suggest asking for?

More info/brief (hah) history:

I am a 28 year old woman. In 2006 I was tested for glandular fever and it showed my Hb was low and was prescribed iron tablets. Whilst on iron tablets my symptoms (dizziness/fogginess, shortness of breath, being soooo tired) continued to worsen until I ended up in A&E. My Hb had gone to 74 and I was given a blood transfusion (3 pints).

GP continued iron tablets. In 2008 I was referred back to hospital with severe lower abdominal pains and 'recurrent iron deficiency anemia'. Endoscopy, colonoscopy etc all clear. Sent back to GP with 'malabsorbtion'.

Lowest level ferritin was 2 and began having B12 injections. Whilst on these my Hb, B12 and ferritin are on the lower side of normal but symptoms such as headaches, lethargy, cramps in legs and hands and being really sensitive to the cold only occur a week or two before injections are due.

Any help more than welcome. Quite happy not to have the stingy injections ever again but don't want to leave and go back to how I have felt in the past (literally like a zombie forcing myself through life!) xx

29 Replies

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  • The best thing to do would be to request copies of your records including any lab work that was done and the reference ranges the labs used. You may be asked to pay a copying fee to get the records. By looking over the records from your previous doctor, you should be able to see what tests were run and, most likely, there will be a chart note saying that you have pernicious anemia. If you need help interpreting the lab results, you can post your numbers here and we can try to help you understand them.

    Armed with copies of your previous lab work and chart notes, it should be easy to convince a new doctor that you do have PA. A competent doctor should know that treatment is for life. A truly good doctor will realize the amount of treatment needed varies by patient and should be based on symptoms rather than lab results. Good luck.

  • Thanks Galixie, yes will be asking for copies! Wasn't sure if they should have tested anything more than my B12 before telling me they were stopping the injections especially after being on them for so long!

  • It's my understanding that after a confirmed PA diagnosis they're not supposed to act upon b12 results because it's pointless unless the reading comes back as low.

    They are supposed to treat based on the symptoms.

    PA treatment is for life according to everything I've read on here.

  • When you look through your records, keep an eye out for an intrinsic factor antibody test. If that test was done and it came back positive, no doctor could deny that you have PA.

    It's more of a gray area if that test was done but came back negative (because you can still have PA even if the test comes back negative).

    As Steap said, once the diagnosis has been made, treatment is for life and should not be rescinded. If you've been getting injections (aka treatment), then of course your serum B12 level should appear to be normal. It can even appear to be high due to injections, but how you feel (are your symptoms returning or not) is the more important metric to measure by.

    The important thing to start off with though, is making sure your new doctor acknowledges the PA diagnosis as correct and reinstates your injections.

  • Hi SC88.

    Just a couple of things...

    B12 deficency can be caused by a number of other things, one of which you have been diagnosed with...absorption problems. If you have absorption problems then it is unlikely that you will be able to absorb enough B12 from your diet, or from oral supplements. If your B12 injections are stopped, it is more than likely that your B12 levels will drop, your symptoms will return, and you will become B12 deficient again.

    The anti-IF antibodies blood test: if you have ever tested positive, then you certainly have PA. A negative results is only 50% accurate - you can test negative and still have PA. This is called anti-body negative PA. Most GP's have never heard of this.

    Your GP may mistakenly think that you cannot have B12 deficency if you do not have macrocytic anaemia (large red blood cells) usually associated with B12 deficency and / or PA. This is wrong.

    30% of patients with B12 deficency present with neurological symtptoms - and have neither PA or macrocytic anaemia.

    If you have ever had a positive anti-IF antibody test your B12 injections should not be stopped. Treatment is for life.

    But not having a positive anti-IF antibody test is not a good enough reason to stop your B12 treatment. That is, unless a cause has been identified (I.e. heliobactor infection, taking a drug that interferes with B12 absorption etc.) If that's was the case, B12 absorption would revert to normal once the causitve agent had been eradicated or removed. From what you say, that doesn't sound like it's happened in your case. If no such cause has been found, then treatment should continue.

    The fact that your symptoms consistently return before your next injection is due is a sure indicator that you need more frequent B12 injection. Certainly not less. Or worse, none.

    The golden rule - always - is treat the symptoms - all the guidelines state this.

    Your neurological symptoms indicate that you should have been on B12 injections every eight weeks - and some people need more than this (but that's another story).

    Your GP may suggest that your try oral B12 supplements - this is not currently the recommended treatment for people with neurological symptoms and the dosage licensed for use in the UK (50mcg) is insufficient for anybody with absorption problems (information about this in the links below).

    Here's some links to information that may help you with your GP:

    b12researchgroup.wordpress.... (Serious Caution Note about the use of Oral and Sublingual B12 Supplements)

    evidence.nhs.uk/formulary/b... (BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes - Including Neurological Regime)

    stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)

    stichtingb12tekort.nl/weten... (Testing B12 During Treatment - Not Advised - Unless Looking for Low Levels)

    stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to know before seeing GP)

    stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

    stichtingb12tekort.nl/weten... (B12 Deficiency and / or PA: Relationship (or not) to Anaemia & Neurological Symproms)

    Good luck,with your GP...please post again if you need more help.

    👍

    P.s. If you don't manage to look at the information in the links before you go to your GP and you're not happy with the outcome, read the information, make another appointment, and then go back with the information relevant to your case highlighted.

    And make sure it's read while you're there, in the surgery (or it will most likely just be put aside).

  • Thanks you so much for such a supportive message and gold mine of helpfulness! Starting my evening reading now!

  • No problem. Enjoy. Think you'll be amazed and enlightened.

    And very cross with your GP 😖

    Post again if you need more help....lots of folks to help.

    👍

  • Hi Foggyme you sound so knowledgable I was hoping you can help me understand my latest blood results! Namely if you have any experience with low wbc readings and if they're linked to PA also?

    Results below. Thanks.

    Folate 6.6 (>5.40ug/L)

    Ferritin 15 (10-291ug/L)

    TWC 3.1 (3.7-11 10*9/L)

    Neutrophil 1.5 (1.7-7.5)

    Lymphocyte 1.2 (1-4.5)

    Monocyte 0.3 (0.2-1.10)

    Eosinophil 0.1 (0-0.6)

    RBC 4.41 (3.8-5.8)

    Haemoglobin est 130 (115-165g/l)

    MCV 90.7 (76-100fl)

    MCH 29.6 (27-32)

    MCHC. 326 (320-360)

    Platelet count 232 (150-450)

  • Hi SC88.

    TWC - slightly under range - could be due to vitamin defiiciency, infection or autoimmune condition

    Neutrophil - slightly under range - could be due to vitamin deficiency, autoimmune condition, infection

    Lymphocyte - low in range but not significant - could be due to vitamin deficiency (folate perhaps?)

    Monocytes - usually low in most people

    Eosenophil - usually low in most people

    Folate low in reference range - could do with being higher (B12 and folate work together so need good levels of folate for B12 to work properly).

    Ferritin - very low in range - indicative of iron deficency anaemia (GP may think it's okay but it's not - especially for someone with B12 deficency. Need ferritin levels to be about 100 - levels this low can make you feel very ill (symtpoms much like those of B12 deficency).

    RBC, MCH, MCHC - all low in reference range - indicative of iron deficency anaemia - in line with low ferritin levels. Perhaps GP would prescribe a course of iron supplements?

    Don't think WBC etc. anything much to worry about - but only thinking of these in line with B12 / folate / iron deficiency etc., which I think is what is reflected in your results.

    GP will view your results in line with whole medical history.

    Sorry so short - not much time.

    This is a really old post so next time perhaps better to put up results as new post so more people see it (only I see this reply and if not available, you wouldn't get any other responses). You'll get a better and perhaps quicker response with a new post and always better to get as much input as possible.

    Anyway, hope this helps 😄👍

  • Ask to have your Folate level checked as this is essential to process B12. SC88

  • Yes Clivealive. I was going to mention Folate levels. I was given B12 injections and only later remembered that folic acid was essential to processing B12. I asked for blood tests and sure enough the readings had plummeted since starting injections. I am now taking folic acid as a supplement.

    Also, my doctor had given me folic acid meds pre-B12 treatment which I think I read somewhere he should not have done. Can't find the info now but perhaps someone else will enlighten?

  • You are right E-A-S ideally folic acid supplements should be taken just after B12 injections have started - especially if the Folate level is high to begin with, which in your case doesn't apply.

  • What do you mean - in my case it does not apply?

  • You said "the readings had plummeted since starting injections" so you are in "no danger" from having too high a level of Folate.

    I think that's what I meant to say

  • "I have asked to speak to the doctor and have an appointment tomorrow morning. I have been told by previous doctors that I have pernicious anemia and will need the injections for life."

    Are you in UK?

    I'd suggest you consider joining PAS (Pernicious Anaemia Society) if not already a member. The PAS can sometimes intervene on behalf of members by writing letters. They have experience in helping those who have had their injections stopped but I think it's easier for them to help members who have confirmed PA.

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717

    PAS office open 8am til 2pm every day except Sundays and some holidays so you might be bale to speak to them before your appt.

    There are stories on Martyn Hooper's blog about how PAS have helped people whose injections have been stopped.

    martynhooper.com/2016/09/23...

    martynhooper.com/2016/04/24...

    If you see this reply before your appt, if you're UK based, I'd also suggest reading

    1) "BSH Cobalamin and Folate guidelines" before you see GP. The BSH Cobalamin guidelines give recommendations to UK doctors on diagnosis and treatment of B12 deficiency. It's made clear about a quarter through document that PA treatment is injections for life.

    I gave my GPs a copy of BSH Cobalamin and Folate guidelines.

    b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of b12 and Folate deficiency" should be on page 3 of listed guidelines or put "cobalamin and folate guidelines" in search box.

    Link to flowchart in BSh Cobalamin and Folate Guidelines. It clearly states that if a patient is diagnosed with either PA or Antibody Negative PA(PA where IFA test is negative) then treatment is lifelong. I take a copy of this flowchart with me to appts.

    stichtingb12tekort.nl/weten...

    2) BNF (British National Formulary)

    If you're UK based, the GP will almost certainly have a copy of this on their bookshelf or internet access to it. If they turn to Chapter 9 section 1.2 and read the whole page they will see that it says that PA treatment is B12 injections for life.

    link to BNF info. BNF is copyrighted so cannot be reproduced here.

    evidence.nhs.uk/formulary/b...

    3) more B12 info in pinned posts. I found it helpful to read fbirder 's summary in third pinned post (last link in list).

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

  • Thanks- will read through these now and might book another apt. Currently doctor wants to 'monitor' me before beginning B12 again.

  • Going through similar thing, last jab a few weeks ago, nurse has referred me back to Gp - have been on jabs every8 was for a year, was diagnosed with PA in 2013. Nurse thinks I should be having jabs every 12 weeks. Tomorrow. Appt with GP I will be armed with Guidelines from B-S-H and BNF ! All highlighting treatment. I feel ready now to do battle with GP. Thanks to advice from site. I will be pushing for jabs every month as still have symptoms on 8 week routine. Also just picked up a copy of my. Blood results from last 3 years, which is quite helpful. Good Luck tomorrow.

  • Good luck! Let me know how you get on!

  • Result!!!! Still getting jabs every 8 weeks. Yay! I did push for every month but as guidelines say every 8 was with PA , doc said she's keeping to guidelines! Took the BSH and BNF guide in with me highlighting relevant bits!

  • HI Sarah,

    Jabs every 8 weeks is the typical UK maintenance routine for people with B12 deficiency who have neurological symptoms.

    If you have PA with neuro symptoms , the BNF and BSH cobalamin guidelines clearly indicate injections every 2 months not every 3 months.

    Might be worth you talking to PAS. Three levels of membership available.

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717

  • Nurses! The one I saw today said she thought it was strange that I haven't got big lumps in my arms, since I have been having 2 injections every week for quite a while. Told her maybe I suck B12 up like a sponge, to which she said "Yes, well you're clearly ENJOYING it": - and yes, if it keeps me from being asleep, going bald, getting dumped, getting sacked, getting sectioned, I'm going to keep on enjoying it...... as long as the doctor believes I'm improving.

  • My doctor today was going down the route of 'well you don't want them do you?!'. Erm no obviously not they sting like hell but if they actually help me I'll take them with bells on please!! So nice to hear other people go through similar treatment! (Well not nice but not lonely 😄)

  • Thanks for all your help, advice and support. Doctor has decided to monitor me before any more B12. B12 was at 371 today and going back in 5 weeks for another check. (Doctor said over 150 was normal). My folate level was 5.4 but I forgot to ask about the ranges. They had not tested my hb or ferritin but said they will at the end of Feb for a full picture.

    My hb at last blood test was 121 (with above 115 as normal). This was in June whilst on my B12 injections.

    I've had anti IF test in the past which was negative so doctor today said I don't have PA. Will see how I fare in the next few weeks and if symptoms get worse will Hp back armed with the info you've all kindly provided and see what happens next. (hopefully I won't just get ill before they take any action). Thanks all!!

  • "anti IF test in the past which was negative so doctor today said I don't have PA"

    It is possible to have PA with a negative IFA test.

    Has your GP seen the flowchart I gave a link to from the BSH cobalamin guidelines?

    stichtingb12tekort.nl/weten...

    The flowchart makes it clear that a person who has low B12, is symptomatic for B12 deficiency with a negative IFA test should be diagnosed with Antibody Negative PA if they respond to B12 injections.

    I suspect there are quite a few Gps out there in the UK who are unaware that Antibody negative PA is a possible diagnosis.

    Do you respond to b12 injections? Do your symptoms improve?

    If you have PA or Antibody Negative PA and have a spell where treatment is withdrawn that could lead to deterioration, possibly neuro damage.

    Martyn Hooper, the chair of the PAS, tested negative on the IFA test more than once before testing positive. Think his story is in his book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" which I believe mentions it is possible to have Antibody negative PA. I gave a copy of Martyn Hooper's book to my GPs.

    Might be helpful to get a complete set of your medical records, can be expensive eg £50 plus. probably interesting to seewhat has been written in the past especially around the time you were told you had PA.

    "was telling me they were stopping the injections especially after being on them for so long!"

    "B12 at 371 today"

    Your B12 levels might be normal range but do not look very high considering that you have been on injections for a long time whch makes me wonder what could stop you absorbing B12 (PA being one reason).

  • I am currently waiting for next apt on 27th feb for FBC, for doc to double check my B12 and folate etc before they will reinstate my B12 injections.

    cramps and pain in my hands have started to get pretty bad

  • Sorry meant to finish by asking what other ppl have tried to help ease cramps and aches- hot water bottle, ibruprofen gel and cooling gel seem to work a little. If anyone has any tips be more than welcome. Thanks x

  • ooh I have been down the same road as you with regards to the endoscopy, colonoscopy, etc and having malabsorption issues re iron. I too feel like one of the walking dead.

  • Hi Yvonneu hope you're faring better and get things sorted. Did your symptoms resolve with b12?

  • Thank you for your reply, SC88,

    I started taking B12 supplements almost a week ago (which I purchased myself over the counter as my medical practice still are not supplying me with any medication) and I already feel much better in myself...even though this may be purely psychological ! lol

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