Recommendations for B12 savvy consult... - Pernicious Anaemi...

Pernicious Anaemia Society

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Recommendations for B12 savvy consultants!

Caradoc1a profile image
Caradoc1a
β€’13 Replies

I'd really appreciate any information on consultants who are in the know regarding B12. I feel that I'm between a rock and a hard place and feel apprehensive about what to do. I'm 4 weeks into EOD SC hydroxo B12 and had relief of many symptoms BUT have developed red itchy rash from knees to sacral area. What to do? πŸ™„ I know I need B12 as some of foot and lower leg neurological symptoms have resolved. But if I'm allergic to B12, what happens?? I need advice!!

Thank you πŸ™

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Caradoc1a profile image
Caradoc1a
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13 Replies
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I’m not entirely knowledgeable but was your homocysteine high? I know that some itchiness happens when homocysteine is being lowered (happy to be corrected by wiser people)

Caradoc1a profile image
Caradoc1aβ€’ in reply toPlatypusProfit8077

I have no idea! It has never been tested. Thank you for the suggestion πŸ’

Myoldcat profile image
Myoldcat

There is such a thing as a homocysteine rash which can happen in the early stages of B12 injections; apparently the homocysteine is partially excreted via the skin. If that's what you're experiencing it should only be temporary.

Caradoc1a profile image
Caradoc1aβ€’ in reply toMyoldcat

Thank you! Someone else told me this yesterday and it's hugely reassuring to know this. So thank you again. I was worried as its not acne which I had known about as a thing which happens with B12.

Myoldcat profile image
Myoldcatβ€’ in reply toCaradoc1a

It's tough navigating all this without knowledgeable medical professionals to support us. Thank goodness for the brilliant folk and huge body of collective knowledge on this forum πŸ™

Caradoc1a profile image
Caradoc1aβ€’ in reply toMyoldcat

So true. I'm amazed by this platform. I use the thyroid forum as well. Both have really helped me in the past 6 months. I'm sure I would be in a worse place without it. πŸ™πŸ™πŸ™

Caradoc1a profile image
Caradoc1aβ€’ in reply toMyoldcat

I have since been diagnosed with shingles which are a bit atypical. Both sides of the body and tracking nerves which I think were affected by low b12. No classic shingle blisters but feels like nettle rash, a bit like mild neuropathy returning. Maybe it is homocysteine provoking a histamine response – who knows... ? I spoke to Dr Andrew Klein yesterday before the shingles diagnosis and he dismissed possible homocysteine rash, saying not very likely. Anyway, thank you again for help

Myoldcat profile image
Myoldcatβ€’ in reply toCaradoc1a

Oh that IS unusual, but strangly a client of mine has just had something very similar! We both dismissed shingles as the blisters were hardly visible, and much less painful that her previous episode. She was on holiday so couldn't see a gp but it has faded pretty quickly. I did read an interesting post describing how histamine releasing mast cells are intimately connected with our nerve cells, so the B12 nerve healing process can trigger high histamine release therefore odd rashes - that would also track nerves and would be like a nettle rash. So many questions...! But wishing you well x

Caradoc1a profile image
Caradoc1aβ€’ in reply toMyoldcat

Yes -I saw that comment. I will track it down and respond. It was such a helpful post - I had not even heard of mast cells and their role.

Myoldcat profile image
Myoldcatβ€’ in reply toCaradoc1a

Just been reading more and it's fascinating! B12 is a mast cell regulator so it's not unlikely that we would notice these blips in the earlier stages of treatment as we rebalance.

Caradoc1a profile image
Caradoc1aβ€’ in reply toMyoldcat

I didn't know that!!

Myoldcat profile image
Myoldcatβ€’ in reply toCaradoc1a

Me neither till about 10 minutes ago!

Myoldcat profile image
Myoldcat

Absolutely!

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