Reluctance of GP's: As I haven't been... - Pernicious Anaemi...

Pernicious Anaemia Society

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Reluctance of GP's

greenbexy profile image
10 Replies

As I haven't been confirmed to have PA but a lot of the symtoms point to it, palpitations, lethargic, anaemia, low vitamin B12, sore mouth and so on, I just want to be fully informed when I go for my visit to the doctors for a plan of action. I seem to get the impression that that doctors are a little reluctant to prescribe the B12 jabs, why is this? Sorry for my ignorance, but I really want to go into this appointment with my eyes open as I am fed up with feeling so low and yawning continually!

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greenbexy
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10 Replies
Gambit62 profile image
Gambit62Administrator

a) general reason is lack of understanding of what exactly a B12 deficiency is and how it works, eg seriousness and consequences of leaving a deficiency untreated, eg caused by macrocytosis,rather than macrocytosis being a symptom - and not amongst the first in about 30% of cases, eg not aware of neuro-psychiatric effects like anxiety and depression

b) tendency to confuse symptoms with other conditions (and there is a huge overlap and there can be more than one condition going on at the same time)

c) ties up time of nursing/other medical staff providing injections

d) myths about B12 being toxic or 'addictive'

e) no incentives for proscribing B12 whereas there may be incentives for proscribing anti-depressants

f) some very badly worded guidelines

g) isome stupidities around licensing frameworks for drugs - eg in UK not licenced to be used more regularly than 8 weeks because nobody supplying B12 has applied for a more frequent licence

h) misguided penny-pinching - perceived as being unnecessary and expensive for any combination of the above

Howard39 profile image
Howard39 in reply toGambit62

Great reply Gambit,

Yes definitely no incentive like anti depressants £50/75 per year per patient.

It may be a good idea to pay and go through blue horizon and have full tests of all your vitamin and throid levels. Get the results and then go to the GP.

Stronger case then and you'll have all the info to help yourself too.

If there are any deficiencies you can post them and get support. Many people do have to buy their own vitamins/ meds but it is a double edged sword more cost less hassle however you are more in control .

Good luck.

Gambit62 profile image
Gambit62Administrator in reply toHoward39

and just a word of caution - it is possible to overdose on a number of vitamins and minerals. At least do research before you decide to supplement .... and preferably consult GP though know it can be difficult where trust has broken down - pharmacist would be a good alternative in that case

wedgewood profile image
wedgewood in reply toGambit62

Yes, that is true, but not in the case of vitamin B12 ( Dutch report )

greenbexy profile image
greenbexy in reply toHoward39

Thanks, yes that is something worth considering.

greenbexy profile image
greenbexy in reply toGambit62

Ok feels like I'm going to be preparing for a battle then! Thanks for the heads up

wedgewood profile image
wedgewood in reply togreenbexy

It will be a battle , so go armed with all the guide lines .etc. Treating the symptoms not the blood results is so important .

Sleepybunny profile image
Sleepybunny

Are you In UK?

Sources of B12 info

1) PAS

pernicious-anaemia-society....

2) B12 Deficiency Info

b12deficiency.info/

3) b12d.org

b12d.org

4) Pinned posts on forum. i found fbirder 's summary very useful . link to summary in third pinned post, last link in list.

5) BCSH Cobalamin and Folate guidelines

b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of B12 and Folate deficiency" Think this is on third page or put "cobalamin and folate guidelines" in search box

6) BMJ B12 article

bmj.com/content/349/bmj.g5226

7) Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

8) Book "Could it be b12" by Sally Pacholok and JJ. Stuart

9) When I first joined HU I learned a lot by reading other people's threads.

Sleepybunny profile image
Sleepybunny

I gave the following to my GPS

1) Copy of BCSH Cobalamin and Folate Guidelines

2) Copy of PAS Symptoms Checklist with all my symptoms ticked

pernicious-anaemia-society.... click on Symptoms Checklist

3) Copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" which is up to date with current UK guidelines.

greenbexy profile image
greenbexy in reply toSleepybunny

Thanks, yes I think writing down all my symptoms will definitely help. I think you just become to accept them, until you see them all listed together. (I was under the cardiologist two years ago for palpitations, which was blamed on not drinking decafe!) Definatley going to invest in some new literature, too. Yes I am in the U.K. Thanks again, I know this may sound corny but it really is nice to know that there is somewhere to come, and people reply so quickly with real interest and concern xx

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