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Macrocytosis Help Please

Dottyspotspot profile image
4 Replies

Hello,

Can anyone point me in the right direction? I have been injecting B12 for 3 years now and I just had blood work done that reveals I still have Macrocytosis. It’s one Mark lower than the ‘needs investigation’ point on the NHS so typically my GP is ignoring it but it has me concerned. I looked it up and google suggests a folate deficiency but there are lots of reasons not to supplement including B12 deficiency and autoimmune disease. I’m sure you all have more experience of this than Dr Google - any help would be really appreciated. Thanks in advance.

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Nackapan profile image
Nackapan

I eoukd get back to the doctor to explain the iron panel. Akso yo know what yiur folate levels are.

I realise easier said than done .

If b12 leveks are okay women of child bearing age are recommended to have 400mcg folic acid daily anyhow.

Most multuvitschsve 200mcg in

My daughters was caused by low folate as her HB was fine. But very low ferritin levels.??

I do wish borderline not ignored to pre empt problems.

Get a copy of your results

Sleepybunny profile image
Sleepybunny

Hi,

A couple of links that might be of interest

Macrocytosis

patient.info/doctor/macrocy...

NICE CKS B12 deficiency and Folate deficiency

cks.nice.org.uk/anaemia-b12...

cks.nice.org.uk/topics/anae...

Gambit62 profile image
Gambit62Administrator

of itself B12 deficiency doesn't stop you supplementing folate - just that you shouldn't start supplementing folate if you have a B12 deficiency that isn't being treated.Avoid taking massive doses of folate as it can prove counterproductive unless you have a diagnosed deficiency.

Having PA or a another B12 absorption problem can also affect the absorption of other vitamins and minerals - the most commonly affected are folate and iron.

Dottyspotspot I'm sorry you are in that situation (I'm someone with unexplained macrocytosis)

You did not mention how often you have your B12 injections but you've mentioned NHS so I am assuming you are taking them with the NHS every 3 months.

The reason for me saying the above is that a few things may be taking place form the top of my head (not a doc, so not medical advice please)

- You are under-treated and may need B12 shots more often. Any Homocysteine or MMA (or HoloTC) test done?

- You have a folate deficiency (i.e. this is no longer about B12). Have you had serum folate or even better RBC folate done?

- The reason for your macrocytosis is not due to B12/folate and caused one of the other several causes for an elevated MCV (there is no way you'd get these tested on the NHS and literature is quite scattered, so you'd have to read literature yourself and order tests yourself. Note: If you are into reading medical literature there is a group of people with macrocytosis in a facebook group called "unexplained macrocytosis". It is not a protocol group but a place where literature and tests are discussed, so if you are into that, check them out). Literature states that upon correct B12 treatment macrocytosis should resolve pretty fast, so if the MCV hasn't normalized, the cause lies elsewhere.

PS: I'm assuming you have no cytopenias and normal haemoglobin. Should you have cytopenias or be anemic, you should see a haematologist and have a bone marrow biopsy

All best

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