Was my pernicious anaemia wrongly diagnosed?

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Was diagnosed having pernicous anaemia in 2011 after feeling terrible for months. Was so relived that the B12 injections made me feel normal again.  I had one every 12 weeks, then 6 months ago went to every 10. I don't get the same benefits from them anymore.

my doctor retired, I have a new one now.

I had a general appointment a few weeks ago and thought it worth mentioning that  I didn't  feel as good on the injections as I used to . 

He looked at all my blood results - " you haven't got pernicous anaemia" he told me. He gave me an explanation , which when I've looked online makes sense.

I am now a little scared?... What can a wrong diagnosis mask??  My B12 was 115 originally.  And I did feel so ill and tired...  I was checked then for any thyroid problems which came back negative.

Going back to the doctors today now I've got over the shock. I know he wants me to go for lots of blood tests...

 

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  • Posted

    Jill,

    Your B12 level plays a major role in your health. If your number is below 700, purchase over-the-counter B12 Sublingual lozenges, up to 500mg. Place it under your tongue and it will dissolve within seconds. You need not get injections. These will enter your bloodstream quickly as well. Many doctors and hospitals in the U.S. do not test for B12 levels and the minimum number (200-300) they allow for a normal result is too low according to many studies. It can lead to joint pain, osteosporosis, acid reflux, heart disease, high blood pressure, depression, and mental illness. Japan and other countries start treating patients when their levels are 500 or less. See your doctor, insist on the B12 test, ask what the number is. Don't let them tell you it's normal, without the number. As we age, we need more B12 because of the natural progression of our aging bodies. Strive for a level of at least 700 and you will feel better. Note that many medications, such as aspirin and other blood thinners, blood pressure meds, acid reflux medicines, and any meds with acid can destroy your red blood cells, keeping many of your nutrient numbers low, not just B12. There is Pernicious Anaemina, Iron-deficiency Aneamia, and Folic-Acid deficiency Anaemia. Many doctors look at decreasing red blood cells and advise you to take calcium and iron, however, if it's a B12 deficiency it could lead to catastrophic diseases and even death. When I saw your number was 115, I had to respond to your question. Get the B12. We weren't aware when it effected my mother for many years after a particial hestorectomy. She died last year after her red blood cells were destroyed daily by a blood thinner called Heparin that the hospital insisted was "Hospital Policy" that she have it while she was there. Go Online and read B12 deficiency and serious medical problems. Your doctor may mean welll, but he/she is going by the guidelines the medical industries and those who make medicines give us. With all the research, I wonder if this is really overlooking the obvious, or a deliberate omission for financial gain, in order to treat the ailments/diseases brought on by the deficiency.

    Praying for you,

    VH

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  • Posted

    You can have low B12 but not PA.  In that case, it's not unlikely that you'll stablise once you have enough in your system. The body is typically very good at storing/reusing B12. Yours was low for some reason and now back on track!

    So, what you're asking is why were you low in the first place?  That could be any reason, as VH mentioned. Something was counteracting the B12 in your diet, or maybe you weren't getting very much at the time. Another reason could be malabsorption, as seen in some patients with Coeliac Disease or other inflammation/distress in the intestines/digestive system. It could be that your new doctor is ruling that out by ordering the new blood work.

    Don't worry yet - see what happens from the new blood tests. This could be quite good news, really!  GOOD LUCK!!

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  • Posted

    Hi! I just wanted to see how you're getting on these days... Please give us an update if you have one. Hope you're doing well! smile
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  • Posted

    HI jill. I was diagnosed with positive intrinsic factor antibody test in 2012. I've gotten cyanocobalamin shots every 3 weeksTill January 2016. My b12 is at 1000. I have had a lot of neurological symptoms. Dizziness, blurred vision, double vision, nerve root demylination at L5 on emg. Woke the doctors up With obvious gait issues. I asked them for hydroxocobalamin shots and folate tabs. I feel so much better. Evidently if you have iron deficiency (low ferritin which is irons stores-it could be a secondary anemia.) I was taking folic acid in a multi vitamin Which has to go through a lot to be absorbed in your body. Where and active forM Is folate not folic acid. Cyanocobalamin has to go through a lot of processes to be absorbed where hydroxocobalamin is an active form of b12. If there Is a iron deficiency anemia and it's not corrected before pernicious anemia is treated it can cause nearologic symptoms and damage.
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