Just wondering if anyone can help me? Had these done just before Christmas.
Serum vitamin B12 152 (170-300)
Ferritin 10 (15-300)
Folate 1.7 (3-23)
I've had my loading doses, last one in between Christmas and New year. Taking 400um folic acid and ferrous Sulfate tabs. I felt 'okay' athe the beginning, now though, my stomach back to how it was (bloating etc) , memory problems never really went away and now the pins and needles are back. IF tested normal, coeliac also normal. I've got all my (evidence) downloads printed off ready for Tuesday morning appt. I'm wondering if I have a good case to ask for injections monthly? The memory problems are the worst, not remembering the name of everyday objects when in conversation -so frustrating! Thanks for reading.
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greenbexy
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RCDW: above reference range: shows a mix of microcytic (small red blood cells) and macrocytic (large red blood cells). Indicative of iron, B12, folate deficency. Can also indicate in inflammatory conditions.
MCV & MCH: both above reference range. Macrocytic anaemia associated with B12 / folate deficiency. Sometimes with hypothyroidism to.
RBC below range and Haemocrit low in range: indicative of B12 / folate deficiency - also of iron deficency anaemia. Can also be associated with inflammatory disease.
Haemaglobin levels with normal range but together with the low RBC - indicates too few RBC's. This is called normocytic anaemia - indicates a mix of microcytic and macrocytic anaemia (confirmed by your other blood results). Causes: iron deficiency anaemia, B12 / folate deficiency. It can also be cause by Vitamin B 2 and Vitamin B6 deficiency.
Haemocrit: at the bottom of the reference range: iron deficency anaemia.
Platelets: also above the reference range: indicative of iron deficiency anaemia (can also be indicative if inflammatory conditions).
B12, Folate levels: both well below the reference ranges so looks like severe deficiencies.
Ferritin level: below reference range - iron deficency anaemia.
So, overall...Mixed pattern of macrocytic (large red bold cells) and microcytic (small blood cells) and raised RCDW shows a mix of large and small red blood cells so would be in line with this.
Mixed picture of iron deficiency anaemia, folate deficency, B12 deficiency and perhaps deficient in vitamin B2 and vitamin B6 (but not easy to say - may be 'hidden' by other deficiencies - or may not be present).
Greenbexy - you must feel very ill indeed with results like these.
Your GP should have prescribed high dose folic acid and iron supplements.
Also - and don't know if you are aware - you can still have PA with a negative anti-IF antibody test (a negative result is only 50% accurate).
Vitamin D could do with checking to - looks like you may have an absorption problem so it's likely that you may be low in vitamin D - again, will make you feel very ill if you are deficient.
Don't have a great deal of time right now but I've had a quick peek at your previous posts and note that you've always had neurological symtpoms.
You should be on the intensive neurological regime of B12 injections (after loading doses you should get an injection every other day until no further improvement - for up to two years (see BNF treatment regimes in the first link).
Your GP may assume that as you have tested negative for PA that this does not apply (if she's even heard of it). She would be wrong.
30% of people who present with B12 deficency and neurological symtpoms do not have PA or macrocytic anaemia (you have macrocytic anaemia but your GP may assume that this is because of the B12 / folate deficency and mistakenly assume that you do not need the intensive regime. Wrong. (See last link below for more information about this).
Don't know how much information you have - a lot, I expect - but just in case, I'm posting some links below (I know you've seen these before 'cause we had a little exhange about them - I think I mentioned eating the elephant in chunks 😉🙃). And sorry, don't have time to look see what you already have.
I see that you had these result before Christmas - really quite shocked that your GP is not treating your quite severe iron and folate deficiency (400mcg is nowhere near enough - 5mg would be more the norm with those levels). And your ferritin level is really low - she should have spotted that and prescribed a three month course of iron supplements with three monthly re-tests afterwards to ensure levels are being maintained (a full iron panel rather than just ferritin would be best).
Any way...good luck with your GP...here are the links (and the overload apology that goes with them 🙃)...the first and the last will help with your GP.
You really do need the neurological regime...if you have trouble getting your GP to prescribe it, come back and we can offer more ways to help you sharpen her mind 😄👍
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)
Sorry Foggyme it posted before I had chance! Yes not feeling quite right at the moment. So surely GP must prescribe monthly injections! Just want to make sure I had a good enough argument, and preparing evidence I hope will help, thanks again, will let you know how I go on. Fingers crossed.
Greenbexy. You don't need monthly injections. You need much more beacause you have neurological symptoms...and you also have macrocytic anaemia too. Here's what the doctors prescribing bible, the BNF says about it:
Pernicious anaemia and other macrocytic anaemias with neurological involvement, initially 1 mg on alternate days until no further improvement, then 1 mg every 2 months anaemia and other macrocytic anaemias with neurological involvement, initially 1 mg on alternate days until no further improvement, then 1 mg every 2 months
Your GP will have a copy of the BNF on her desk and can look it up.
She may be under the mistaken belief that because you tested negative for PA you don't need it. But the guidelines clearly state 'and other macrocytic anaemias with neurological involvement'...
So...you should be having a B12 injection every other day - until no further improvement - this could be for up to two years.
Have a look at the last link on my previous reply. You may need to print that and show it to your GP.
It's really important that you get this regime to prevent the possibility of potentially irreversible neurological damage.
Look up subacute combined degeneration of the spinal cord on the internet and take that to show your GP (or download it from the PAS website if you're a member). Not suggesting you have this but it's a way of demonstrating to your GP the potential consequences of under treating B12 deficiency. Many are completely unaware of the neurological havoc this can wreak on the human body.
Grrr...some days I just despair at the sheer lack of knowledge GP's have.
Thanks, will print off. It has hit home how bad it can get when a distant relative of mine informed my mum that she has to have a spinal operation because of undiagnosed B12!
But you know what these doctors are like, they don't like you knowing more than them and can dismiss you in a moment! Don't get me wrong I'm not in awe of my doctor or frightened by him, I just know what they are like from working on the wards. That's why I'm using the ruse of 'my overly protective mother who has discovered the Internet' scenario! The doctor who has been there from the beginning of diagnosis is reasonably new, I know if I get no joy there is another in the practice who just does what I ask! Need to be referred to women's health, okay, need to be referred to cardiology (palpitations), okay. But there is no one to be referred to with this one, really. Hey ho, I'll go with the flow and see what he says, gently, gently and all that! Thanks again, it's such a worry...
Hi Greenbexy. Hmm...know what you mean about docs 😀. Not so sure about the overly protective mother and the internet angle though. Just leaves room for GP to shut you down. Much better to do it with hard evidence i.e. the guidelines from the British Society of Haematology and the British National Formulary - the doctors prescribing bible.
Terrible news about your distant relative and the neurological damage from undiagnosed B12 deficiency.
Disgraceful. And it happens far too often.
Take care and good luck 😄
P.s. Don't forget the iron and folate supplements 👍
Thanks and may reconsider my ruse and actually take her with me, as she really does fit the description, downloading might be going a bit too far though! Lol
Yes the iron and folate, must ask for Thyroid too. That was my mother's instructions as she has underactive. Thanks again.
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