Struggling with doctors and gettin correct info/treatment

Hi this is my first post and probably the same story as everyone else but I am struggling to get the doctors to agree to more frequent injections and all they seem to want to do is push me towards depression/CFS/fibro.

I found out I had low B12 at the end of 2013 (22yrs old) with a level of 126 pg/ml (180-914 and folate level of 6 ng/ml (4-20) I only got the test as I had been feeling really run down and couldn't function so had asked to recheck for iron deficiency as I was anemic in my teens.

Following this I was put on the loading doses and then the 3 monthly injections and they tested me for intrisic factor (negative) Parietal cell autoantibody level (low Positive) and all the other usuals; rheumatoid, coeliacs, chrons and thyroid with were all negative. They couldn't tell me why I was deficient so after my first maintenance injection and another blood test I decided to not have the injections as I should of been able to sustain my levels with diet etc.

Fast forward to May 2016 about 2 years after injections my levels were back down to 175 pg/ml (180-914) to which I was told was normal and didn't need to take any action because I was having the injections which was wrong as I had stopped.

I managed to see a doctor and forced him into allowing me the loading injections again after being laughed at and told I could have tablets, even tough I clearly have a absorption problem! I also then had some more tests to see if it was linked to a autoimmune issue (my mum and maternal grandmother have rheumatoid arthritis and paternal grandma had Graves' disease) again the test came back normal apart from Parietal cell autoantibody being positive. Saw my doctor again who said that it's nothing to do with an autoimmune issue.

I have carried on the maintenance injections for the last year going back to the doctor several time and saying I feel I need more frequent injections due to neuro symptoms but get told they are nothing to do with the B12 now! Had another blood test for Thyroid (negative) and the B12 but stupidly the day after my injection so reading was 1500 pg/ml (180-914) which is now being used against me. I decided to go to another doctor (female this time) in hope that she would help but have been faced with the same problems.

First appointment told that B12 is due to autoimmune and she ordered tests for ferritin and Vit D. She tried to point me towards fibro/cfs/depression.

I've been back today as I've had enough and to discuss supliments and more frequent injections armed with info I've found on here regarding the neurological regime. She the told me I don't have PA so no autoimmune (after telling me that was the cause last week) and was pushing away from that (she wouldn't retest IF) and that they won't increase my frequency as symptoms are not to do with B12. I get pins and needles particularly the last 4 weeks before injection, memory loss(I forgot half my symptoms when there, I really should write them down) tension headaches, chronic fatigue, breathlessness, forget words neumerous times a day, tinnitus, walk into doorways, lack concentration, muscle fatigue, unsteady on my feet, painful muscles, blurred vision, unrestful sleep among others.

She's now writing to haematologist and rheumatologist for help and I've told her I'm not going to be fobbed off! Should my next step to write to the practice manager?

Sorry for the long post, I was worried about posting the same as I hate going into the doctors as feel like I'm being stupid but I can go on. The fatigue is the main symptom I struggle with most as can't handle doing anything without a nap so frequently put off going to docs as can't face getting up first thing to call for an appointment.

For reference my latest results-

Serum total 25-hydroxy vitamin D level 25-OH VITAMIN D 60 nmol/L [50.0 - 999.0] which falls into insufficient range and ferritin26 u/gal which I know is in range (11-300) but I have started taking a sublingual B12 complex, folic acid 5mg daily as always on low end, ferroglobin liquid for the iron and a vitamin d3 spray which is 3000iu daily in a hope to feel slightly human again.

Any info or guidance you could give would be much appreciated or if you think I should be looking at something else and it's nothing to do with B12.

thank you!

6 Replies

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  • Oh dear your story is so familiar, my only way of feeling better was to eventually self inject. I was in and out of my doctors was referred on to a specialist who tried to tell me it was "in my head" the reason I felt better after the injections was a placedo, my brain was telling itself I would feel better so I was. I was told it sounded more like I had ME and possibly FM. I was at the point where my path was leading me to give up work and spend the rest of my days in a state of confusion fatigue and pain, so i created a different path for myself, and keep symptom free by self injecting every two weeks ......... nearly everyone on here has your story as there own

  • Download the NICE Document - cks.nice.org.uk/anaemia-b12...

    Print out the bit where it says

    "Anti-intrinsic factor antibody is extremely specific for pernicious anaemia, with a high positive predictive value of 95%, but a low sensitivity of 40–60%. This means that about half of people with pernicious anaemia will have anti-intrinsic factor antibody [Andres et al, 2004; Longmore et al, 2007]. If anti-intrinsic factor antibody is present, pernicious anaemia is very likely, but its absence does not rule out a diagnosis of pernicious anaemia [Devalia et al, 2014]."

    And show it to any doctor you see.

  • Hi,

    Are you In UK?

    If yes, I'd suggest reading whole of "BSH Cobalamin and Folate Guidelines"

    b-s-h.org.uk/guidelines/gui...

    Sadly there are doctors in UK who are unaware of this document.

    Flowchart in BSH Cobalamin and Folate Guidelines

    stichtingb12tekort.nl/weten...

    Flowchart above makes it clear that it is possible to have PA (Pernicious Anaemia) even if IFA (Intrinsic Factor Antibody) test is negative (called Antibody Negative PA). PA, whether antibodies are negative or not, requires lifelong B12 injections.... see BSH Cobalamin guidelines or BNF link.

    BSH Cobalamin guidelines make it clear that patients with B12 deficiency with neurological symptoms should have loading injections every other day for as long as symptoms continue to get better (this could mean loading injections for weeks even months) then it's an injection every 2 months. My understanding (I'm not a medic) is that this applies whatever the cause of the B12 deficiency.

    A lot of forum members have to fight really hard to get correct treatment if they have neuro symptoms. Often it seems to me, that UK patients with b12 deficiency (with neuro symptoms) get fobbed off with the standard treatment for b12 deficiency without neuro symptoms which is less intensive.

    Do you have neuro symptoms? See lists below.

    b12deficiency.info/signs-an...

    pernicious-anaemia-society.... see Checklist

    Other B12 info

    1) Pinned posts on this forum. I found fbirder 's summary of mainly UK b12 documents helpful. link to summary in third pinned post.

    2) PAS website

    pernicious-anaemia-society....

    Some forum members join the PAS. They have members from around the world.

    PAS tel no +44 (0)1656 769 717 answerphone so messages can be left

    May be stories on Martyn Hooper's blog that are relevant to you.

    martynhooper.com/

    3) B12 Deficiency Info website

    lots of useful b12 info and an interesting blog about b12 issues.

    b12deficiency.info/

    4)b12d.org website

    b12d.org

    5) BNF Chapter 9 section 1.2

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

    6) BMJ B12 article

    bmj.com/content/349/bmj.g5226

    7) Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Martyn is the chair of the PAS, book is up to date with UK b12 guidelines. He has written two other books about PA and b12 deficiency.

    8) Book "Could it Be B12" by Sally Pacholok and JJ. Stuart (USA authors)

    Very comprehensive book about b12 deficiency with lots of case studies.

    "all they seem to want to do is push me towards depression/CFS/fibro."

    You have my empathy about this, as I went through exactly the same thing and so have many forum members.

    Links about misdiagnosis of PA/B12 deficiency as ME/CFS/Fibro

    b12deficiency.info/misdiagn...

    martynhooper.com/2015/08/04...

    Who gets PA?

    pernicious-anaemia-society....

    If you suspect you have PA, I'd suggest contacting the PAS, link above.

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

    Unhappy with treatment/diagnosis?

    Link about writing letters to Gp about b12 deficiency

    b12deficiency.info/b12-writ...

    CAB

    citizensadvice.org.uk/healt...

    HDA patient care trust

    Uk charity that offers free second opinions on medical treatment and diagnosis.

    hdapatientcaretrust.com/

    Most important thing I learned...

    was to always get copies of all my blood tests. I learned to do this after being told over the phone or face to face that everything was normal/okay an dthen finding abnormal or borderline results on copies.

    nhs.uk/NHSEngland/thenhs/re...

    england.nhs.uk/contact-us/p...

    In relation to B12, I look at b12, folate , ferritin and full blood count

    b12deficiency.info/b12-test...

    b12deficiency.info/what-to-...

    patient.info/doctor/macrocy...

    labtestsonline.org.uk/under...

  • Oh my goodness... I'm new here Chloef so can't offer any advice....still so much to learn and no diagnosis yet, but I can say my experiences with Drs over the last 3 years with regards to my symptoms (identical to yours) and my experiences this week once I have mentioned B12 deficiency,have been as miserable as your experiences!! I sincerely hope you get sorted asap.

  • After all the same I decided to self inject. I now self inject every 2 weeks so I can feel human again.

  • Thanks everyone, I will be looking into self injections I think! How will I find info on what needles and where to source the B12?

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