have a new dr who doesn't understand PA

[sunny2330]

I am brand new here. My B-12 levels have always been greater than 2000. My new Prim. Care Dr. does not get this. She tells me Im not anemic and do not need injections like my old doctor had me on. She is not understand even though I have tried to explain. This is so upsetting to me- what to do??????

[Nackapan]

Refer her to the BNF guidelines. Ask PAS for helo if you ard a member

Have you got a diagnosis of PA

Have you got it on youf medical records injections for life? Whether PA confirmed of not?

Write to Gp. Copy in practice manager,local m.p even.

See another doctor in your practice

Take someone with you

Use the search bar above yk resf other posts

[sunny2330 in reply to Nackapan]

I am learning my way around here just now- and directions to helpful links I can show this dr would be amazing there is so much info here. Not sure where to begin - and yes my old dr diagnosed me but stopped taking my medical insurance so I had to find a new one- and this dr doesn't understand

[Nackapan in reply to sunny2330]

Are you n the UK? Search bar is at the top of your screen

Or Google

[mcg-woo in reply to sunny2330]

Hello! What about the possibility of getting a letter from your former primary care doctor stating your need of lifetime injections plus dosing frequency and going to see a different doctor? Let us know how you work it out. What has happened to you is my biggest fear as I know that my primary care will be retiring at some point in the future. The thought of not being able to access treatment terrifies me. Best of luck to you!

[wedgewood]

I think that you are in USA? ( “primary care doctor = GP ( General Practitioner in U.K) Anemic = Anaemic here

It’s more difficult for U.K. members to give you advice . So I would make it plain in the heading that you are in USA.

Have you got a diagnosis of Pernicious Anaemia? P.A.patients must have b12 injections FOR LIFE . Your B12 readings

should always be high .

Yes doctors do not understand B12 deficiency. It’s exactly the same in U.K.

I was unable to get regular enough injections to keep the symptoms of P.A.at bay . i was forced to self inject. We get our B12 ampoules from German online pharmacies .If you find it impossible to get your B12 injections from your doctor I can recommend self-injecting . You can get B12 ampoules from Canadian sources . It is cheap to do . You will get some good suggestions from the USA I hope . Best wishes .

[Gambit62 Administrator]

you could try pointing them at the area of the PAS website particularly aimed at helping medical professionals improve the diagnosis and treatment of PApernicious-anaemia-society....

you could refer them to the BCSH guidelines on diagnosis and treatment of cobalamin and folate disorders

onlinelibrary.wiley.com/doi...

if in the US then you could refer them to the AAFP page on treating B12 absorption problems

aafp.org/afp/2017/0915/p384...

This page refers to the BCSH standards - it isn't an ideal page but it does at least start out with a statement that covers that B12 deficiency doesn't necessarily mean anaemia.

[Sleepybunny]

Hi,

A few links that might be helpful....

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has some members in other countries.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring and an online contact form.

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

US link about PA

rarediseases.org/rare-disea...

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

B12 article from Mayo Clinic in US

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency.

Maybe your doctor would read above article?

Two useful B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

Films about b12 deficiency

b12deficiency.info/films/

I am not medically trained.

[MoKayD]

Hi, I'm here in the US.

Will your insurance company allow you to switch doctors? If you can't find a new doctor, ask your doctor for a prescription for B12 ampules and syringes so you can self inject. You can take the prescription to any pharmacy and have it filled.

If you are willing to pay the money out of pocket, some emergency medical locations such as Patient First or Urgent Care will give B12 shots without a prescription. I'm not absolutely sure how much it costs but I think it's around $40.00.

I'm sorry you have to go thru this. Hopefully you will be able to get a new GP who is willing to work with you.

[Gill567]

Feel for you. I've the same thing here in France. My doctor retired and the new one insisted on a blood test which obviously came back high 3000 +. Has now stopped my injections as I feared would happen. No trying to explain would change her mind and she wouldn't take any notice of the letter I have from years ago that said I would need b12 injections 'probably' for life . Maybe the probably is the problem. I'm now approaching my 3rd month without my injections and worried but it's so hard to fight here in France because the doctors consider themselves gods. Hope you have better luck there than I have here.