Advice please

Hi

I've not posted before on this site although I've 'lurked'for a while.

I am 60 yrs old. In 1991, 26 yrs ago , I had a right hemi colectomy which included the ileum. Right from the word go, I was given B12 inj. Six loading doses, then two monthly, then three monthly. No questions, told that I would need for life.

This has been the case until about ten months ago, when suddenly the nurse informed me that I would need a blood test, I argued, she checked with Nurse Practitioner and I got my jab, next time they wouldn't even make the appt. without a blood test. I had the test, result high levels of B12. Stop inj.

Around this time, I developed some pretty heavy lung problems, not related, but have been on some fairly hardcore meds including steroids and chemo. and so the B12 has been pushed aside.

I have been diagnosed with Peripheral Neuropathy, attributed to my type 2 diabetes, however I work closely with my diabetes nurse and we do not believe the evidence supports this.

My problem is, that if I look at the symptomatic evidence, it could all be attributed to other stuff going on, fibromyalgia, lupus, diabetes, medications etc. The one thing that can't is the Gut resection.

I have an appt. With my GP in a couple of hours, am I right in thinking that B12 is an issue here and could impact generally on any of the other conditions ? And am I considered to have PA?

12 Replies

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  • Hi Ccupcakes I'm not a medically trained person but I understand that it is only via the Ileum that B12 can "get into" the blood stream via the stomach - hence the need for injections for life.

    Hopefully there are others on here who will be able to give you good advice and I wish you well.

  • Hi Like Clivealive I am not medically trained but personally I would need to know what the diagnosis was 26 years ago (were you diagnosed with PA) and if so why are they stopping as PA means injections for life? Would it be worth getting all the information you can from today's appointment and a copy of your blood tests Inc full blood count and if the decision from the GP is to stop then you could contact the pernicious anemia society for advice. Be strong and don't let them fob you off there are great people on this forum as well to support and encourage

    Mark

  • Hi,

    list of b12 deficiency causes from PAS website.

    pernicious-anaemia-society....

    list of b12 deficiency causes from B12 deficiency info website

    b12deficiency.info/what-are...

    PAS office opens early am so you may be able to speak to them if you ring before your appt.

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717

    Who gets PA and B12 deficiency?

    b12deficiency.info/who-is-a...

    Link above mentions people who have had gastric and/or intestinal surgery

    pernicious-anaemia-society....

    If you have time before appt, I'd suggest reading "BSH Cobalamin and Folate Guidelines"

    there is a section called "Poor absorption due to gastrointestinal surgery or disease"

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

    In past I have given a copy of BSH cobalamin guidelines to my GPs

    If you have time, have a look at fbirder 's summary of B12 documents. Has some quotes about high B12 levels. Link to summary in third pinned post.

  • Hi Cupcakes. Sorry, need to be brief...not much time and want to get something to you, hopefully in time for your appointment this morning.

    The nurse is wrong to stop your injections on the basis of a high serum B12 level.

    The high level is to be expected (and welcomed) after injections - it simply reflects that fact that B12 has been injected. The level of serum B12 is no indicator as to the efficacy of treatment - all the guidelines state that once treatment has commenced testing serum B12 level is no longer required - unless checking to make sure that levels are not too low.

    clivealive is right - vitamin B12 is absorbed via the illieum - no illieum - no absorption of vitamin B12 - you need injections for life.

    Here's some information that may help you with your nurse/GP - they need to restart your injections (never should have been stopped).

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

    stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

    stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)

    Sorry, bit short of time so can't leave more now. If you need any further information or need further help to get your injections re-started, put up another post for more help and support.

    Good luck...hope all goes well...and here's some more information about B12 deficiency (will also help 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)

    pernicious-anaemia-society.... (PAS Symptom Checklist)

    stichtingb12tekort.nl/weten... (BSH B12 Deficiency / PA Diagnostic Flowchart)

    onlinelibrary.wiley.com/doi... (British Society Haematology (BSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)

    cks.nice.org.uk/anaemia-b12... (NICE Guidelines Treatment of B12 / Folate Deficiencies)

    onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord)

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

    stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)

    stichtingb12tekort.nl/weten.... (B12 and Intrinsic Factor)

    gov.uk/drug-safety-update/n... (B12 & Nitrous Oxide Contraindicated)

    👍

  • Hello, been to Docs, not entirely happy, but, have come away with blood test forms for FBC, Serum B12 and Folates. She wants to investigate more regarding the peripheral neuropathy but wouldn't budge 're B12 until bloods are back next week..

  • This makes me so livid Cupcakes - GP's refusal to fully understand your history, as well as all the guidelines and latest research means your neurological and physical health is at huge risk.......

    Here is the latest BMJ research document with a useful summary as well as the extracts below that could be included in a letter to the surgery if GP will not read full document.

    Page 2 :

    "Box 1 Common causes of vitamin B12 deficiency5-9

    Impaired gastric absorption

    • Pernicious anaemia

    • Gastrectomy—partial or total • Zollinger-Ellison syndrome

    Impaired intestinal absorption

    • Ileal resection or disease—for example, Crohn’s inflammatory bowel disease and tuberculous ileitis •

    Bottom of page 4 under "How is response to treatment assessed? :

    Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment,24 and retesting is not usually required".

    cmim.org/pdf2014/funcion.ph...

    PS. Metformin will also deplete B12

  • Thank you Polaris,

    I do understand that she wants to know the cause of the Neuropathy and treat accordingly, but I think I am going to have to fight for the B12.

    I also have Crohns Colitis and take Esomeprazole. I have an appt. with my Gastrologist coming up and I'm going to take it up with her as Well, so all of these links and info are so so useful xxx

  • I am furious on your behalf. Can you self inject like so many of us do - including myself :-) Am assuming the Esomeprazole a PPI so your GP SHOULD know that one of the side effects is the lowering of acid and thus preventing the journey beginning for the B12 ....

    I had a Hemi-colectomy some 43 years ago for Ileo-Caecal TB - when Crohns was also discovered. Lots more surgery ensued over the years. I was NOT told about B12 - nor was it ever mentioned at the six monthly Crohns Clinics I dutifully attended ( now I do wonder why )

    Back in 2007 I had spinal surgery for stenosis - and I started B12 injections around 3 years ago ( living in Crete I can buy OTC ) Now that I have educated myself about B12 I am beginning to think my spinal issues could possibly have been due to low B12 over the years. I was always told my results were normal when they were around the 300 mark - and as i now know there can be neurological issues when the result is below 500.

    b12deficiency.info/signs-an...

    If you scroll down the page in the above link you will be able to see the Neurological Signs and Symptoms of B12 Deficiency - including neuropathy. ( One of my issues )

    Not wishing to add to your problems - but has your thyroid been checked ? Often when we have gut issues - it can lead to Hashimotos - which is auto-immune Thyroiditis. Often inadequate testing is performed at GP level and you may have been told you are * normal * ..... VitD levels could well be low - and as it is anti-inflammatory and a steroidal pro-hormone it can be helpful with Crohns.

    I am not a medic - just a Hashimotos gal with Crohns and a B12 issue :-)

    Just read some of your other posts - raised cholesterol is often linked to LOW thyroid and before thyroid testing was started in the early 70's - people with raised cholesterol had their thyroid treated. I too was diagnosed with Fibro - but once the thyroid was optimally treated - it became a thing of the past. Started to teach yoga at 65 some six years ago .....

  • Aha now she did ask when my thyroid was last checked and that I think is one of the blood requests also, difficult to tell because they are barcoded!

    I take Vit.D daily as part of my Chemo routine.

    My hemi was for a 'typhoid like' infection, which caused gangrene.

    It has never been fully identified, other than to rule out Cancer. Bits of my intestines landed on lots of desks across the country for analysis apparently, imperial Cancer Research was one of them i remember !

    The nerve stuff is becoming more interesting as well, I have some atrophied discs in my spine, and joint linings are beginning to Dessicate , all linked to UCTD, or are they, I'm beginning to wonder.

    I don't have raised Cholesterol tho?

  • I only mentioned the cholesterol as you have a Statin listed with your other pills on your Profile - apologies for the mistake. Glad that bit is OK :-)

    Testing for the Thyroid needs to be more than the TSH - which Docs are so fond of. That is such a small part of the story. You also need the FT4 and the FT3 testing along with the thyroid anti-bodies - TPO and Tg. The Thyroid produces T4 which is a storage hormone and needs to convert into T3 for the metabolism of every cell.

    Fibro is often linked to low T3 which is the ACTIVE thyroid hormone needed in every one of the trillions and trillions of cells. So when low - things do begin to go wrong.

    thyroiduk.org

  • Hi again,

    Link about writing letters to GP about B12 deficiency

    b12deficiency.info/b12-writ...

    Person who runs website is helpful and sympathetic and can be contacted by e-mail.

    Have you considered contacting PAS (Pernicious Anaemia Society)?

    PAS contact details in my post above.

    "told that I would need for life."

    Some people on forum get a complete set of their medical records. I'm just wondering whether something may have been written in your records in the past about needing lifelong B12 treatment.

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

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

    nhs.uk/chq/Pages/2635.aspx?...

  • Thank you for these links, I'm going to use the letter template.xx

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