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Pernicious Anaemia Society

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exasperating both general health & mental health issues by not receiving the correct diagnosis and medication for PA

Dislancas69 profile image
6 Replies

Nothing is in a timely manner ,it’s all feeling like vicious circles

There really should be somewhere we can turn too

I’m really up for self injecting once my initial diagnosis, but this seems so sad that the people who should be listening really are not.

it seems like in the minds of all of those people who should be helping us …we all should still be eating raw liver (how ridiculous ) even if I ate the whole cow ( or any other animal come to that) my body still may not be absorbing nutrients and I maybe vegetarian , and obviously because everyone’s depressed we should all be taking antidepressant’s as we definitely need to add those into the mix (not) I’m definitely not saying they aren’t good for some but not me …

Visiting our gp …the above feels to me there goal definitely for women of a certain age or anyone come to that who will put up and shut up 🤐 there jobs done

Everyone should be helped and be able to enjoy simple qualities of life

Sorry about my rant and if it’s all over the place, I’m mad today and I’m sure hundreds thousands before me have felt exactly the same it’s so sad

I sit here shaking my head thinking I need to calm down chill …put together what sense and anger I have got into writing to those who may help me …but they probably will not …but I must stay optimistic

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6 Replies
Sleepybunny profile image
Sleepybunny

Hi Dislancas69,

Many of us will relate to your rant.

I felt angry for many years .... suffered both physically and mentally needlessly. I tried to use the anger I felt to help others avoid my experiences. These days I think it's more wistfulness for what my life might have been like.

PAS have personal stories on their website which you might relate to.

pernicious-anaemia-society....

"put together what sense and anger I have got into writing to those who may help me"

Link about writing letters to GP about B12 deficiency. It has letter templates.

b12info.com/writing-to-your...

You can leave comments under blog posts on B12info.com website and sometimes she replies.

b12info.com/blog/

If you join PAS (Pernicious Anaemia Society) hopefully you can get some support.

PAS membership is separate to membership of this forum. You do not need a PA diagnosis to join.

pernicious-anaemia-society....

PAS support groups mostly meet online.

pernicious-anaemia-society....

PAS Members Support helpline

pernicious-anaemia-society....

I left these on one of your other threads but leaving them here in case they help you or someone else reading this thread. Some links may have details that could be upsetting to read.

Threads with links to help those in UK struggling to get diagnosis/adequate treatment of B12 deficiency or wanting to complain.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po....

wedgewood profile image
wedgewood in reply toSleepybunny

👍👍👍Thank you ! 10/10 🥇🥇🥇

wedgewood profile image
wedgewood

We are so lucky that we have PAS .What ever life would be like without it ,I cannot imagine . It’s fine for you to have a rant Dislancas69. We all understand you . It is so wrong that we have such a battle , because of ignorance. At least we can help eachother . Yes anger sometimes overwhelms me too , because my life , and the lives of many others has been negatively affected by the dreadful ignorance of most of the medical profession regarding diagnosis and treatment of B12d /P.A. . All for the want of a cheap vitamin . Truly unbelievable. Best wishes to you .

Sleepybunny profile image
Sleepybunny

GPs get very little in their training about B12 deficiency.

I've been shocked in past by the level of ignorance among GPs and specialists.

Wrong ideas about B12 deficiency

Next article is from Dutch B12 website. Treatment patterns, reference ranges etc may vary from those in UK.

Misconceptions about a B12 deficiency

stichtingb12tekort.nl/engli...

B12 Institute - Netherlands has an article on diagnostic pitfalls.

b12-institute.nl/en/diagnos...

Help for GPs

Might be worth pointing some of these out to GP/other doctors.

1) PAS website has a page for health professionals.

They can join PAS as affiliate members, no charge.

pernicious-anaemia-society....

See also PAS webinars.

pernicious-anaemia-society....

2) Has GP heard about CluB -12?

club-12.org/

It's a group of doctors and researchers who are looking into B12.

They have regular zoom meetings and have hosted a conference in UK.

Their website mentions a conference in France in 2025.

3) Good articles to pass to GP

B. Wolffenbuttel wrote an article for PAS in Jan 2024.

Only One Chance

pernicious-anaemia-society....

Search for "Wolffenbuttel B12 deficiency" to find other articles he's written, including one for Mayo Clinic in US and one for BMJ (British Medical Journal).

His most recent article was a review of B12 treatment/ diagnosis which might be worth passing to GP.

Search for "Wolffenbuttel B12 deficiency overview 2024" to find it.

In my personal opinion he's one of the few doctors who understands B12 deficiency.

4) B12d.org online talks may be of interest to GP.

b12d.org/event/

wedgewood profile image
wedgewood in reply toSleepybunny

Thanks again Sleepybunny

Dislancas69 profile image
Dislancas69

Possitive today I have just signed up to PAS

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