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Pernicious Anaemia Society
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Differing medical opinions? Hoping that this is positive outcome!

So today was the day of my neurology appointment, after waiting 9 months to be seen since referral in May 2017. I was holding so much hope that I would get some answers after suffering permenant pins and needles, in both my hands and feet. However with previous Dr appointments, leaving me feeling hopeless, I was also apprehensive that I may leave feeling disappointed if I didn't get some answers. So after my GP had told me that my B12 level of around150ng/l wasn't of real concern and was not anywhere near low enough to be injected or the cause to my pins and needles in the hands and feet, the neurologist said he was going to be writing to my GP for him to give me injections. The neurologist did all the reflex tests and checked eyes, and said they were all okay, and took history of my symptoms, and said that he thinks its due to my B12 without me even having to really say anything about B12. I took the print out of my results of last test showing iron deficiency and B12 and asked so are you having injections, I replied saying 'no my GP said it wasn't low enough or that it could be cause of my pins and needles' he looked a little shocked and said it is low enough, and said I think I need to write to your GP to start B12 injections. I actually couldn't believe it, he sent me for more blood tests, 6 tubes, testing all sorts including B12, I just hope my supplementing B12 with a B vitamin complex, will not effect my levels just bordering on the considered 'normal' range and then be denied them. He did say they might not test them, due to the length of time since my last test, so really hope this may be the start to recovery. I have lots of other B12 symptoms which prompted him to suggest its B12 that might be causing the issue, and due to my physical exam he didn't feel I needed any scans. Im keeping my fingers crossed I can get some level of care now.

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That's good news to read lc24 but it's sad that you had to wait for so long before potentially getting the treatment you need. I hope the Neurologist's letter doe the trick with your doctor.

When you get to see your doctor please also ask him/her to check your Folate level as this and B12 help your iron to make red blood cells and to function properly in your body.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

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My folate is off the scale, but my ferritin is very low!!

Iv heard that folate can be high and mask B12 deficiency!?

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There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body

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unfortunately mine look unbalanced, if my serum folate is currently high >20 (didn't print the actual level), should I avoid supplementing if they give me B12 injections?

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Personally I have taken 1 – Folic Acid 400μg tablet every day for more years than I can remember as a "maintenance" dose but then I get B12 injections every three weeks and have absorption problems with my stomach.

Certainly keep an eye on your level if you are given b12 injections.

Are you able to eat plenty of leafy green vegetables such as sprouts, broccoli, asparagus, spinach, peas, beans etc? These are the natural sources of Folate although nowadays folic acid is being fortified into breakfast cereals.

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Hi Ic24,

When I converted your level in ng/l to the unit that is being used in my laboratory I work in, actually your level falls below the ref. range of normal.

I understand your plight because me too have level on the low normal range. My B12 is about 160 pmol/l. Folate is also almost falling off the normal ref. range. I tested B12 for 3 times from Nov 2017 to Jan 2018 and all 3 occassions were lowish.

I hope you can request for anti-parietal cells antibody and intrinsic factor antibody. You can check for homocysteine and MMA level they will both be elevated in B12 deficiency. My APCA is positive and waiting to review at the gastro.

If you have other lab tests that supports a b12 deficiency or a specialist opinion, I think your gp would be able to give u the b12 injections?

Hope that things goes well soon for u! Take care

Yuki(med tech)

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Yes mine does ref range is 180 in my area but my result was considered an indeterminate result, and to keep repeating? I just hope I receive the right treatment now and that its not too late with the pins and needles!

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Yeah!

Anybody else with peripheral neuropathy (pins and needles in fingers/toes) ask to see a neurologist. They see lots of people with B12 deficiency.

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I was told it was probably my age by neurologist

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I was told the same thing by the neurologist. No dr seems to accept that I may have PA because my B12 level is normal, intrinsic factor was fine. I've been suffering with spiking BP, elevated heart rate, pins & needles (actually 24 symptoms that are classic PA). BP has caused a mild stroke 19 days ago. BOTH of my parents had PA & got monthly shots. I had no idea it would be so difficult for me to get a prescription for B12 injections. It's a vitamin, for pete's sake! Endocrinologist just did MMA test. Today is Friday. I won't get the results until Monday. My BP is so bad that I am just praying that I can get through the weekend without having another stroke. Everyone's comments have been so enlightening to me. Thank you.

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Hello Ic24 hooray for a medical person who seems to know what he's talking about.I do hope you get your B12 injections and hopefully more than just every 12 weeks.My appt with my neurologist is end Feb she has already had MRI brain and spine and nerve conduction tests sorted but my GP says it's because of my age and given me some painkillers!! Hope I am being referred to team in Oxford doing a study on neurological symptoms and causes hope they throw some light. Like you supplementing with B12 and folic acid and GP did give me something for vertigo but afraid I shall end up like my mother on strong immunosuppressive drugs for years.not taking this dismissive attitude from GP anymore I want to be well!let us know how you get on x

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