Pernicious Anaemia Society
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Really fed up

I was diagnosed with B12 deficiency 2 years ago and started on injections. I was also told my folate was low and was started on 5 mg daily.

However,recently, I'm feeling increasingly tired,breathless and out of sorts. My folate came back last week at 0.7 and my GP just said that I should talk to my gastroenerologist about it. Any advice please as I really feel awful at the moment.

As a disclaimer,I also have Bile Acid Malabsorption Syndrome and Connective Tissue Disease.

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Are you still taking the folic acid? If not, 400 ug a day should work. I'd probably take 4 of them a day for the first week.

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I'm currently taking 5mg folic acid daily

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And your folate is still really low? That means it's not getting into the body from the gut. I'm as bewildered as your doc.

The form of folate shouldn't make any difference to absorption, but you could try methylfolate and/or folinic acid.

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I understand that because folate is absorbed in the terminal ileum and I have Bile Acid Malabsorption Syndrome that I may not (obviously don't ) absorb it properly but I wondered at what level doctors become concerned?? I just feel so bleugh at the moment that I really don't know what to do!

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as I understand it bile acid malabsorption syndrome can affect your ability to absorb multiple vitamins, minerals and nutrients.

B12 is absorbed in the terminal ileum in a specialist process but I don't think the process for absorbing folate is that specialised.

I suspect the best thing to do is to talk to your gastro.

I believe you can get injectable folic acid so that might be an option.

Have you had a look through the HU forums to see if there is one more specific to malabsorption syndrome - under my hub and then view all communities and scroll down to the bottom of the list.

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Folate is absorbed throughout the small intestine plus, to a lesser extent, the large intestine. ncbi.nlm.nih.gov/pmc/articl...

Folate absorption is horribly complicated. This article seems very thorough, but I've only skimmed it...

ncbi.nlm.nih.gov/pmc/articl...

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Were you taking 5mg folate daily when you had the test? Have you been treated continuously for your B12 deficiency as well?

Did they test for other things, like B12? The symptoms for both B12 and folate deficiency have a huge overlap.

It seems very unusual to have taken that much folate and still be deficient, on the same day. I don't think folate injections are available on the NHS, though I may be wrong. Patches are available though they usually come with B12 as well (not a bad thing :).

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I'm on 3 monthly injections of vitamin B12 and also vit D as my vitamin D level was only 4 when tested. My last B12 injection was in December and I think it was 426 a fortnight ago when my bloods were checked.

I think what I really want to find out is if such a deficiency of folate could cause the symptoms I'm experiencing and also if there is an actual limit as to how low is safe?

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Are you having loading doses of VitD ? - if you are in the UK your level would be better around 100 - if in the US then 60 is the desired level.

vitamindcouncil.org

grassrootshealth.net

Both low levels of VitD and Folate can be the cause of many symptoms.

Hashimotos ? - Thyroid ? - can be the cause of mal-absorption :-)

thyroiduk.org

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I initially started on oral vitamin D when my level was 4 and it came up to 34 with an intensive loading regime. They changed it to injections as when it kept dropping and the consultant felt my BAM may be reducing the absorption.

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...Low VitD goes hand in hand with Crohns - check out the website I posted for you above. I know because I have it too - along with Hashimotos. Crohns will trash your absorption so you need to work at healing the gut the best way for you. Going gluten free could help reduce the inflammation and allow vitals to be absorbed. Also being dairy free - but do one thing at a time and monitor reactions carefully. It is not a short term solution - you have to keep at it :-)

I was diagnosed with Crohns some 43 years ago and am now well. As Crohns is auto-immune I would check out Hashimotos - also auto-immune. Auto-immune issues like to hunt in packs !!

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Strangely enough,I had a video capsule endoscopy 15 months ago which showed 35 -40 actively bleeding ulcers in my terminal ileum. My gastroenerologist said that it was Crohn's and started me on azathioprine which I couldn't tolerate. She stopped the azathioprine at my last visit and said it could be vasculitis or Crohn",s

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I could never tolerate medications for Crohns either. They are sticking plasters and not dealing with the root cause. Terminal Ileum is the usual starting point for Crohns .... You haven't picked up on my point about the thyroid :-)

Once Hashimotos - auto-immune Thyroid - was diagnosed and I was able to join up all the dots !

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I do have Sjogrens syndrome,UCTD and BAM,- there enough autoimmune stuff for a while!

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Thank you all so much for your answers - admittedly I only skimmed through the article as I can't seem to concentrate as much at the moment!

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