Pernicious anemia

[Demij]

I got diagnosed with pernicious anemia in 2015 the GP start me of with b12 injections and folic acid tablets however since September last year they stopped all my treatment. I am trying to get appointment with my GP but never available. All my symptoms have come back dizziness tired pins and needles confused all them basically. Am 25 years old and I have no life my work isn't happy after taking time off. My immune system is very low.

Thanks

[wedgewood]

As you have been diagnosed with Pernicious Anaemia , you must have injections FOR LIFE.This is an auto-imune condition which cannot be cured . Did the doctor give a reason? You MUST get an appointment straightaway , and have your injections re-instated . They will need to start from scratch again after such a long interval without treatment and give you loading doses ( 6 over 2weeks ) again , as your symptoms have returned . I know it’s difficult confronting doctors when you don’t feel well. Can you take a friend with you to be a witness to everything that is said? If you get no joy, you must get in touch with the Pernicious Anaemia Society , if you are a member . Tel [phone] on Tuesdays Wednesdays ,Thursdays and Saturdays 8 am-12 noon .

[Demij in reply to wedgewood]

They done blood test which shows my levels were normal again but I don't feel normal. Thanks

[wedgewood in reply to Demij]

There is no need to get your levels tested . They mean nothing if you have PA , and have started treatment . You must get the BCSH standards for treatment of PA printed out and take them to the doctor . He should know that you need TREATMENT FOR LIFE . Take a friend with you . You must take action on this . I know it’s difficult if you don’t feel well . You need someone to support you . Let us know how you get on . If all else fails you can consider self injection . That’s what I had to do , as one injection every 3 months was insufficient .( its cheap) Let us know how you get on .

[Demij in reply to wedgewood]

I finally got a call back from the GP today and they told me I have to wait 2 weeks to get blood tests done again. The GP said they haven't confirmed that I have pernicious anemia altho my doctor of 19 years of my life told me I had pernicious anemia till he retired last year. Can I ask what is the BCSH? My mam is a nurse and is mad with the GP for not helping me when needed. Thanks

[Demij in reply to wedgewood]

Where did you get the b12 injections from aswell thanks

[wedgewood in reply to Demij]

I get my B12 ( Hydroxocobalamin) ampoules from an online German pharmacy

“ versandapo.de in English”

Google that and get straight through to the site in English . If you accidentally get onto the site in German , scroll up or down to find the foreign flag, and click on the. Union Jack 🇬🇧.

Search for Hydroxocobalamin . A drop down list appears . Click on Hydroxocobalamin acetat , and you get the choices . I use 1mg x 1ml ampoules from Rotexmedica . There are also 1mg x2ml ampoules from Hevert . I prefer to inject less liquid .

I buy 100 at a time -economical. Use by date about 2 1/2 years ahead .But you can buy 10 or multiples thereof . Shipping by courier costs €9.00 no matter how many you buy . You need to register before your first purchase . You can pay with a card or by PayPal. Takes about 4 working days .This is a reliable professional pharmacy controlled by the German health authorities . Has never disappointed me in 2 1/2 years .

But do try to get correct treatment from your doctor . You may well succeed . I didn’t , but some people do . . There must be a record of you having been diagnosed with Pernicious Anaemia 16 years ago.

Best wishes .

[Demij in reply to wedgewood]

Thank you this has been a big help I'm sure my mam will be pleased also thanks

[wedgewood in reply to Demij]

Don’t forget that you need folate /folic acid to work with B12 . Lots of green leafy veg /peas . Or failing that, a folic acid tablet of 400 ug . -Amazon has them

[Demij in reply to wedgewood]

I was prescribed folic acid however the stopped them the same time as my b12. I still buy them over the counter thanks

[Gambit62 Administrator]

Demij, are you based in the UK or outside the UK? If you are in the UK you can refer to BCSH standards which are treatment for life - but outside the UK it may be more difficult to find the correct standards to refer your GP to.

[Demij in reply to Gambit62]

In the UK thanks

[Gambit62 Administrator in reply to Demij]

Demij, try getting your GP to look at the BCSH guidelines - which they can access on the BNF but can also be accessed here.

onlinelibrary.wiley.com/doi...

there is a diagram for diagnosis and treatment that quite clearly shows that treatment should be for life so your treatment should not have stopped.

Treatment should not be based on serum B12 levels after loading shots - most people who are being treated seem to need high levels to feel okay and to be sure that enough B12 is getting through to their cells. Serum B12 only tells you what is happening with levels in your blood - which are squewed because of the delivery method - it doesn't tell you anything about what is happening at the cell level.