Should I tell my GP about this commun... - Pernicious Anaemi...

Pernicious Anaemia Society

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Should I tell my GP about this community?!!!!!

Sallybones profile image
18 Replies

Just curious if anyone here suggests their GP looks at or even joins this community to see what their patients are saying in the real world? I'm tempted to tell my GP!!!

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Sallybones profile image
Sallybones
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18 Replies
jillc39 profile image
jillc39

I tried.... totally dismissed!

LtAngua52 profile image
LtAngua52

I tried too, but like jillc39, he was dismissive and sceptical. They just don't want to have their view challenged. It's lazy thinking.

Foggyme profile image
FoggymeAdministrator

Hi Sallybones. I agree with jillc39 and LtAngua52. Most GP's don't like their 'knowledge' and 'authority' challenged. Downright lazy, and potentially dangerous - as we all know to our collective costs'.

Might be worth a shot though...nothing tried, nothing gained 😀.

Might be worth mentioning that it's the Pernicious Anaemia Socity's forum and point them to the PAS website first!

Also, a really good website for information is b12deficiency.info ....

Good luck....be interested to hear what happens.

fbirder profile image
fbirder

I would imagine that the average GP doesn't have enough time to plough through all the postings on here for such little return. Foggyme's suggestion of pointing them to the PAS website is much better - they can pick up some proper info from there, information aimed at medical professionals.

Lisahelen profile image
Lisahelen

When i mentioned to two of my gps about this forum and also the official PAS site i was both times, shall we say, politely told they were a load of rubbish, with useless scaremongering information, like the rest of the internet info and god help dr google!

fbirder profile image
fbirder in reply to Lisahelen

And I can understand that reaction. Just look at some of the stuff in here that barely classes as woo-woo.

Ask your GPs how many times a month somebody comes in waving a printout from some clickbait website claiming that triple-fermented jostaberry wine is the perfect cure for ingrown nostril hair - and that it is available from their site for just £29.99 a bottle - and can the NHS pay for it?

That's why I went to see my GP waving a piece of paper that had BMJ in big letters at the top and why I always try to recommend proper, real, scientific sources to back up anything somebody may take to the GP.

o19f17f15 profile image
o19f17f15 in reply to fbirder

Quite agree! That's the only way to do it or to discuss with practice nurse the best way to approach the doctor and which of the practice Drs is most likely to take an interest.

clivealive profile image
clivealiveForum Support

Sneak onto the doctor's computer (if they look away from the screen long enough) and make PASoc their irreversible default "Home Page" :)

in reply to clivealive

Hahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahaha!

Frodo profile image
Frodo

No point. They won't even read books / legitimate info - "too busy" (that's a polite way of saying f*** off).

pitney profile image
pitney

Yes I told my GP I had joined the PA society and that I used this site, I also gave her a copy of Sally's book . I really feel we have to keep spreading the word and letting our GPs know just how many other people are suffering the same symptoms and what seems to help.Good luck and best wishes.

hunny59 profile image
hunny59

Mine flat out said that "everyone on the internet has an axe to grind" and dismissed pretty much anything I had to say unfortunately.

123harry profile image
123harry

my gp couldn't have looked less interested if she tried when l mentioned b12d.org and pa society and was horrified l was buying self injectable methyl b12, wouldn't budge on b12 treatment and gave me more iron tablets just to get rid such a shame they cant just take a quick peek and find out there as credible a site as you will ever get for this condition

Sallybones profile image
Sallybones

Hi everyone

sorry a bit late replying, have been a bit 'wobbly' last few days, but just read all your great comments. Love Clivealives SOH! The responses were just what I expected as I also had a rebuff but a polite rebuff when I first and second time mentioned PAS & B12 deficiency to my GP. I did also take in downloaded info and new guidelines. However I have a sneaky feeling now they have been read by my GP as I've known her a long time and she is not one to debliberately dismiss something with a grain of truth and legality in it if it would be to a patients detriment. However I do believe the other practice partners as a whole will have discussed it and said no to even a trial.

However my frosty endocrinologist who I did a post about some weeks ago, actually wrote quite a good letter to my GP (I got a copy) suggesting that it might be worth trying me with hydroxy injections or consulting with the haematology dept for advice or refer me to them. It was quite a positive letter and I do know my GP has written to the haematology dept for advice. So just maybe something may happen!

I was quite honest with the endocrinologist in that I had tried several self injections and had felt some improvement. This she has related back to my GP, which I am glad about. I only know what's going on because I ring up and ask and they are generally very helpful at the practice. Maybe also helped because my optician wrote to my GP recently requesting a referral to Opthalmology because my eyesight in left eye (and hearing left ear) is deteriorating rapidly. Not good!

So I will keep plugging away and will post the outcome when I hear back from my GP.

I've also submitted updates for my medical records with details of allergies, intolerances, & that I'm a vegetarian. Vegetarian partly because I couldn't myself kill to eat but also because I can't digest meat / poultry anymore plus lots more foods. All have been added to my record apart from being vegetarian! My nutrition I know is very poor.

heyho onwards and upwards.

sallyb

janetmenzies profile image
janetmenzies

What a really good question! When I approached my NHS GP with my symptoms a year ago, he treated me with absolute contempt, saying: "You burn the candles at both ends ..." etc and literally throwing an out-of-date list of private psycho-therapists across the desk. A year on, when things were getting really bad, I was too tired to have a holiday, so spent the money instead on visiting a private GP. She has been really open-minded. I've told her about this site and also about my idea to try to develop a really specific, empirical diagnostic protocol of the non-clinical symptoms of B12 deficiency / PA. She is very supportive, and wants to hear about what I come up with when I have my review in October.

I think you should tell your GP about the community. Plan how you are going to do it and what you are going to say. Try to do it in a non-threatening way. I always find that framing it in the shape of a question, asking for advice works better than anything confrontational. So: "I was wondering whether you could advise me on whether it might help me to look at any PA websites or forums?" "Have you heard of any on-line help I could find to support me between my visits to you?"

When dealing with people, remember LAP - "listen, ask, praise" - generally gets positive reactions! Good luck!

Sallybones profile image
Sallybones

Hya thank you for your response. I'm persevering with the powers that be and funnily enough I was wondering if I could part with my copy of "Could It Be B12" and give it to my GP! Dilemma being that I can't afford to buy another copy just now and I do keep referring to it. But I think maybe it would be worth passing it on & that may mean more help for others at my surgery as a result.

Good idea thank you Sallyb.

o19f17f15 profile image
o19f17f15 in reply to Sallybones

Think Martyns book is a better option for UK GPs to read.

Cherylclaire profile image
CherylclaireForum Support in reply to o19f17f15

Me too.

Also he is aware of the dietary difference between being vegan and vegetarian, and doesn't see vegetarians as necessarily being short of extrinsic B12 -which is often a problem I find in American medical advice /info.

Some Drs will only take notice of the opinions of other medical professionals, however, -although I personally haven't yet found a gastro-enterologist who will give me more than 5 minutes, despite being sent to two so far. Last one said that if I don't have a stomach pain, I don't need to see him.

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