Upon reflection

The new GP said I cant have PA as red cells too small.

My vit D is very low end again having had a months intensive supply a year ago followed by monthly top up.

My ferritin is 7. Stocks are exhausted she said. Wont start prescribing until after biopsy for coeliacs on 20th in case obscures results. Fine.

Haem is 114 on low end too, though previous GP surgery not interested in doing anything. She thinks iron replacement will solve all. I am exhausted 24/7/365. Have all PA smptoms, yesterday started new horrid taste and sore tongue.

IFA negative. Hm

Has she convinced YOU I am not B12/PA?

Is testing B12 again despite my saying it shows just what is swimming around. Her answer catagoric no because of small red blood cells. Last May I had large blood cells. Does that mean anything? Nothing has happened re treatment from then to now.

She is willing to give a couple of injections of B12, possibly to placate me, which at least shows shes not against them. As we know not a lot of use but better than nothing. I do want to go the SI route. Have all the supplies arrived this week. They can not do me any harm.

Does almost zero ferritin throw up symptom of anything else I have not even thought about?

Am I missing something? Am I totally wrong? I know some of balance and falling over in total darkness cross with my Menieres Disease but they have been quite quiet until last six months.

I am still walking into door jambs, not able to walk in a straight line.

Any thoughts would be gratefully received, as ever.

Love

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11 Replies

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  • a) iron deficiency will counteract any tendency to macrocytosis caused by B12 and folate deficiencies. It sounds as if you probably have a significant iron deficiency.

    b) ferritin is a protein that binds to iron to allow our body to use it - so low ferritin is a potential indicator of an iron based anaemia.

    c) if you were going to retest for B12 then I'd suggest looking at MMA (and homocysteine if available) at the same time as these can help clarify the serum B12 test as they are looking at waste products that build up if there isn't enough B12 available at the cell level - though they can be raised by other things

    d) as you are probably aware macrocytosis doens't present as an initial symptom in about 30% of B12 deficiency cases so it isn't a defining characteristic

    e) iron deficient anaemia symptoms have a huge overlap with B12 deficiency.

    f) don't know about whether treating the iron deficiency would affect the test for coeliacs, or how iron deficiency would affect the result if at all. As it is nearly 3 weeks away and the evidence does point to a significant iron deficiency I'd suggest trying to formally confirm one way or the other if there is an interaction, though things in the NHS machinery can be really slow. Contact the people doing the test and pose the question directly

  • just trying to do a little research - came across this in relation to coeliac and iron deficiency

    coeliac.org.uk/gluten-free-...

  • Thank you guru for your wonderful response. I shall check with GP, purely manners, on Monday that I can check on affect of supplement on test result. She did say it coated gut in "black" and would "hide" what was looked for! She also said if Id waited this long... though I feel a certain urgency to get repairs underway!

    a) was my gut feeling

    b) was what she said, but I felt she didnt trace that to any possible end, just the most obvious

    c) Is the MMA test expensive? Wondering if I can put it on B12 request form and get away with it?

    d) thought so

    e) ditto

    f) as above.

    Such knowledge and support.

    Many thanks.

    Amazing how even though I thought the above, and had read everything, being faced down by bright confident young doctor can make you doubt yourself. I did try to counter her points but she had a (quick, " confident") reposte to them all.

    I may print your response out as a thorough debunking, gently, of her opinion, coupled of course with the sheaf of guidelines and symptoms etc already printed, but which I didnt take with me.

    I actually was very fearful that morning. I had to try to gee myself up to think positive, every five minutes as the prospect of another negative ignorant stupid GP confrontational experience filled me with despair. Luckily, so far so good.

    Sincere thanks Gambit.

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  • it wouldn't be standard to do MMA on the NHS and the other possibility - homocysteine often isn't available on the NHS. Homocysteine is quite expensive. MMA moderately expensive. Depending on your resources you could look into getting MMA done privately, but I'd talk it through with the doctor as getting tests done privately can get backs up and sometimes GPs aren't prepared to take any notice of the tests.

  • Correct again. Her lips became a straight line when I showed her my privately done Thyroid test!! She neither spoke nor noted them!

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  • ""The new GP said I cant have PA as red cells too small."

    "My ferritin is 7"

    Low levels of iron can lead to microcytic (small) red blood cells. Low B12 and/or low folate can lead to macrocytic (enlarged)red blood cells. I wonder if the effect of low iron is masking the effect of Low b12 or low folate.

    Not everyone with PA or other causes of b12 deficiency has macrocytosis.

    Think there is something in the pinned posts on forum about this. May be something in the summary of B12 documents fbirder compiled. Link to his summary in third pinned post (last link in list). Think the BSH Cobalamin and Folate Guidelines mention that macrocytosis does not occur in all PA patients.

    b-s-h.org.uk/guidelines/ Click on "Diagnosis of b12 and Folate deficiency"

    patient.info/doctor/macrocy...

    patient.info/doctor/pernici...

    labtestsonline.org.uk/under...

    Blood Smear/Film

    Have you ever had a blood smear also known as blood film, as this may show up both macrocytic and microcytic red blood cells in someone who has both low iron and low b12/low folate. Think this test is available privately if not through NHS.

    labtestsonline.org.uk/under...

    patient.info/doctor/periphe...

    I gave my Gps a copy of Martyn hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" plus a copy of BSH Cobalamin and Folate Guidelines with relevant bits circled, and a copy of PAS Symptoms Checklist with all my symptoms ticked.

    pernicious-anaemia-society.... Click on Symptoms Checklist

    "IFA negative. Hm"

    Is she aware that the BSH Cobalamin Guidelines mention Antibody Negative PA? (PA where IFa test is negative?)

  • Thanks, as always guru. I shall study all the links and thank you for your help.

    I shall keep you updated.

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  • Hi Footygirl has your doctor thought to test your Folate level?

  • It was not mentioned. Should I add it to the B12 request slip??

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  • I would say yes Footygirl as the two work together. You might even ask about magnesium.

  • Can only confirm that low ferritin can counteract macrocytosis. Before I was finally diagnosed with B12 problems I started taking iron as ferritin was somewhat low. As my iron levels got better, my red blood cells slowly got macrocytic.

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