Confused and angry...: My husband was... - Pernicious Anaemi...

Pernicious Anaemia Society

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Confused and angry...

Otis2018 profile image
4 Replies

My husband was diagnosed with PA at the end of October and had an intensive course of B12 injections. His symptoms are severe and tick several of the boxes in the PAS checklist. However, our GP has now stopped his 3-monthly injections because remote checks by a local gastro team (of what he doesn't know as he's had no direct contact them) claim it can be controlled by diet. But he doesn't have any diet deficiencies (i.e. he's not vegan and eats meat, fish and dairy) and according to a haematologist has been B12 deficient for several years.... He's so despondent and doesn't know where to go from here. Advice please - we're very new to this and I so want to help him. Thank you

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Otis2018 profile image
Otis2018
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4 Replies
Nackapan profile image
Nackapan

Back to .G.p

Not dietary .

PA diagnosis

Injections for life

Not understood .

PAS wil help.

Write to the practice and demand to be treated as stated by the guidelines

Loads of posts to look through on this.

I fought to go back on every other day as neurological symotoms severe.

Guidelines state every other dsy until no further improvements

Only a very very small minority manage I oral b12 .

Have his injections helped.

Proof of the pudding

It cdn take s long time to recover or get as good as you can.

Vital to keep up treatment.

Otis2018,

Have you the results of his blood tests, including iron, folic acid, vitamin d etc. ?

Many here are despondent and sadly doctors are not some of the most educated in this condition.

What was his advice from the haematologist ?

Read as much as you can, others will follow with expert advice.

Just to reassure you that it can take upto 3 to 4 months

For your bloods to be replenished , the journey in recovery is hard as your body adjusts.

Wishing you both best wishes

Marz profile image
Marz

I wonder if the Gastroenterologist was aware of the PA diagnosis ?

Jillymo profile image
Jillymo in reply to Marz

Can you not get your husbands haematologist to write to his Gp confirming his B12 has been low for a very long time and point out you are very worried about nerve damage and his health.

Point out the guide lines and insist he is in need of regular injections. As you can see from others on the site many of us have failed in getting the correct treatment for the condition and are forced to self inject.

My Dr did exactly the same and contacted a gastrologist I had never heard of or seen ! I am also under a haematologist but strangely my Gp didn't contact her. Has he had an intrinsic factor test - if not ask why ? If they do one and it comes back negative as it often does request further testing to get to the root cause of his deficiency.

I'm afraid you have to be insistent and list all his symptoms.

I wish you both good luck.

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