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Newly diagnosed but unsure...

Posted , 6 users are following.

alice46446
alice46446

Hello all,

So yesterday I was diagnosed with having pernicious anemia and had my first injection today.

I have had many stomach problems over the past 5 years such as bloating, diaorrhea, cramps etc and keep being told it's viruses, dietary, all sorts. The dr didn't want to test me for Crohns purely because "I don't bleed when I go to the toilet" even though I had a test a couple of years ago that flagged crohns.

Could the pernicious anemia give me these symptoms? I'm just worried that there's something else going on and it will just be passed on as this.

Thank you for your reading smile

1 like, 12 replies

12 Replies

  • Dena58
    Dena58 alice46446

    Posted

    Dear alice46446,

    I am sorry that you had to go through 5 years before being diagnosed. I also had 5 years and 14 doctors between becoming chronically ill and getting a firm diagnosis. Those years gave the PA (ialso have Intrinsic Factor Antibody) plenty of time to tear through my body. I still have many gastro issues. I have had to shuffle through the mound os medical issues I had versus the limited information doctors have about PA.  I was prescribed tons of meds I should not have been taking to find out what works for me.  

     Each persons body reacts differently so no one can give you exact info. My stomach and intestinal issues continue on.  I have to be careful with carbs because it causes my stomach to dump large amounts of acid that tear up the stomach lining.  I took the PPI meds without realizing how damaging the PPI's were to the rest of my body.  My bone density became low and I began breaking bones. PA is a very destructive chronic illness with many areas of the body that become effected. There is a Pernicious Anemia B12 Deficiency group on Facebook that has reliable information.  It is a closed group so you do have to request to join.  I have found the information invaluable.

    I wish you an easy journey as you begin exploring this illness.

     

    • alice46446
      alice46446 Dena58

      Posted

      Thank you for your reply smile

      I have gone gluten free and most dairy for the past week which has seemed to help but still get twinges.

      I guess sometimes you have to go with how you feel and not wait for a Drs response.

      Thank you for mentioning that fb group, I will join it now.

      I hope it's as easy as it can be!

    • Dena58
      Dena58 alice46446

      Posted

      It is easy to join.  I hate to tell you that you are entering a maze that can be quite hard to manage once you get a PA diagnosis.  Most doctors know very little about it and very little about vitamins.  

      Wishing you the best.

  • aveline
    aveline alice46446

    Posted

    Please - keep eating gluten!

    The fact that you have digestive issues plus one auto-immune condition already diagnosed should be a little flag that you could potentially also have Coeliac Disease. 

    Please continue to eat a varied diet with plenty of gluten while you get this sorted out - further testing may rule out Crohn's and CD, but you won't know without full testing done. 

    Of course, your stomach issues could stem from PA or even something else. My hope is that you'll find B12 to be all that you need smile It does take a while for the body to repair itself as it's building and maintaining stores of B12. It's remarkable how one deficiency could impair a body in so many ways!!  HUGS to you as you recover!!

    • alice46446
      alice46446 aveline

      Posted

      I'm having a stomach scan at some point so hopefully that will flag something up or come back all clear.

      I've already been tested for coeliac which was clear so it's not that (as far as I know).

      Maybe it has been anemia all along! I'll just have to wait and see smile

  • suzanne57663
    suzanne57663 alice46446

    Posted

    Hi There Alice , glad to see you in discussion but sad that it's taken so long for a diagnosis's. I have learned on this thread that different countries have differing ways of handling PA. I am in the US and have have had this strange and exhausting diaese for over 20yrs. As years have gone on its become harder and harder to not have stomach issues almost always. The injections have gotten more frequent (7days) now. Luckily here in US I am able to give my own shots. Nothing I have tried for stomach probes. Works I do have a colonoscopy every 5yrs. because of the higher risk of cancer. Those are fun. Keep researching everywhere to get more info, you are right Drs. don't know very much about this disease , I am lucky to have an endocrinologist that's from a country with a high rate of PA, she is well informed. Hope to see you on the forum

    • clivealive
      clivealive suzanne57663

      Posted

      Do you supplement with Folate as this is essentail to process the B12 you are injecting and it gets "used up"

    • suzanne57663
      suzanne57663 clivealive

      Posted

      Yes I supplement with folic acid and a number of others. Folic still stays low as does my hemiocrit. As a child I was always anemic. I guess I stuck with it. Thanks for you kindness
  • kelly09968
    kelly09968 alice46446

    Posted

    Hi, I've just read your posts. PA/B12 deficiency is quite a hard thing to get your head around, as a few other people have said everyone is different and you can get symptoms which others don't get.

    But you will almost certainly have PA if your blood tests indicate antibodies, and your gastrointestonal symptoms could be Crohns.

    I don't have PA but a B12 deficiency but it does mean that I'm more prone to developing Crohns, I do have quite severe Colitis attacks, 2 of which I have ended visiting hospital for, but what does trigger my Colitis attacks are when I have a virus, so how your body reacts to viruses maybe contributing to your gastrointestinal symptoms.

    Long story short because PA/B12 and immune disorders can be quite complicated mention all symptoms at your G.P/ Hospital appointments, and if you aren't satisfied with thier answers continue on the forums, because there will always be someone to support you!

    Good luck

    Kelly

  • clivealive
    clivealive alice46446

    Posted

    Has your doctor tested your Folate (B9 a.k.a folic acid) level as this is essential to to process the B12 you are having injected?

    What is your schedule of injections?

    As I understand it having Crohn's disease can lead to a B12 Deficiency but P.A. is an inability to "grab" the B12 in the food food.you eat

    In a normal healthy person the stomach lining has what are called "Gastric parietal cells" which produce "Intrinsic Factor" which travels with food through the small intestine which is made up of three parts - the Duodenum, the Jejunum and the Ilium..

    Iron is absorbed in the Duodenum, most other nutrients in the Jejunum and our friend B12 in the Ilium.

    Here the Intrinsic Factor binds to the B12 and the "B12/IF Complex" enters the cells on the wall of the Ilium after binding to receptors on the surface of the Ileal cells, allowing it to enter the blood stream.

    Sadly some people with "traditional P,A." either do not produce Intrinsic Factor or if they do, they also produce an antibody which destroys it and it is then called "Autoimmune Pernicious Anaemia".

    In addition it can happen that we produce "Parietal cell Antibodies" and "Intrinsic Factor Antibodies" which totally wipes out any chance of absorbing the B12.

    Finally, it is not uncommon for some neurological symptoms to appear to get worse before they get better. Take this as a sign that the B12 is repairing the damage done to your nervous system.

    I am not a medically qualified person but one who has had P.A. for 45 years and I'm still "clivealive" at 75.

    Please do check with your doctor or nurse to see how "healthy" your Folate level is. It is important.

    I wish you well for the future 

    • alice46446
      alice46446 clivealive

      Posted

      Thank you for your message.

      I am currently on 6 over 2 weeks and then one every 3 months from then on.

      I know that I don't take it in from my food as my diet is healthy and I eat all animal products which is why I cannot take tablets for it.

      Unfortunately when I asked the nurse as to why it had been undiagnosed, she was unsure and I am not due to see a dr for a while.

      I will keep asking the all important questions though smile

    • clivealive
      clivealive alice46446

      Posted

      If you have a definite diagnosis of P.A. then your doctor should be treating you (and your symptoms if they continue after the "loading doses"wink in accordance with the B.N.F Guidelines as follows:

      Treatment of cobalamin deficiency

      "Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF, 

      Standard initial therapy for patients without neurological involvement is 1000 µg intramuscularly (i.m.) three times a week for two weeks, then every three months. 

      The BNF advises that for Pernicious anaemia and other macrocytic anaemias patients presenting with neurological symptoms should receive 1000 µg i.m. on alternative days until there is no further improvement, then 1 mg every 2 months.

      However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment"

      I have highlighted the paragraph that applies to you which says evrey two months.  The last paragraph applies should you still be having neurological symptoms after the loading doses. This merans that the alternate day injections can continue if necessary.

      It is not uncommon for some symptoms to appear to get worse before they get better - take this as a sign that the B12 is working to repair the damage done to your nervous system.

      Don't forget to ask about your Folate level

        

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