Can not believe my GP!!!!: I’ve just... - Pernicious Anaemi...

Pernicious Anaemia Society

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Can not believe my GP!!!!

Queeniz profile image
9 Replies

I’ve just got home from my “useless “ GP..... I actually can’t believe what he sat “With a straight face” and told me ???

Out of the blue after nearly 5years & said I “Don’t have Pernicious Anemia anymore”......... God only knows how that’s even possible given 1- ive never been treated. 2- I haven’t had a blood test for nearly 8 months ????

I’m speechless to be honest & now I have no idea where , who or what I’m going do apart wait to die I guess 😢

What’s wrong with people not wanting to help anyone these days???????

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Queeniz profile image
Queeniz
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9 Replies
Nackapan profile image
Nackapan

Have you had blood tests?

Queeniz profile image
Queeniz in reply to Nackapan

I’ve had loads but not for the right things. I’ll pm you & explain x

Nackapan profile image
Nackapan in reply to Queeniz

Just so you know I don't do pm. I have read it. See another doctor or nurse. Turn up at at an out of hours sugery. Make a list. Keep persevering to get the treatment you need. Bookeep a double appointment. Good luck. Hope your cats okay now.

Queeniz profile image
Queeniz in reply to Nackapan

I’m so sorry I didn’t know you don’t do pms I won’t send another one. Again sorry.

My Isabelle is doing so well thanks for asking 😻 have a nice evening to come c

Nackapan profile image
Nackapan in reply to Queeniz

I'm glad Isabelle doing well. No need to apologise just sick you don't think I'm rude nor replying to a pm.

Let's hope you see a better doctor next time.

BirdlessBox profile image
BirdlessBox

If he has been receptive before he may have just been having an off day - you could write to him - if he's generally not helpful then move on. Hopefully you can get some recommendations for better Doctors near you.

Sleepybunny profile image
Sleepybunny

Hi,

"now I have no idea where , who or what I’m going do"

1) If you haven't already please think about joining and talking to PAS soon.

They can pass on useful info about diagnosis/treatment of PA.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

Support groups may know about helpful Gps in area. There are 13 groups in UK.

Blog post about how PAS can support PAS members seeking PA diagnosis

martynhooper.com/2017/06/24...

Costs about £20 for a year's basic membership

pernicious-anaemia-society....

2) Have you tried writing a letter to GP?

Next link has letter templates people can base their own letters on.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

3) How about contacting HDA patient care trust? They are quick to respond to enquiries.

May be worth including extracts from some of these documents below in any letter. You could pass on copies of these to GP but may be more effective to put the info in a letter as letters should get filed with your medical records.

UK B12 documents

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF

bnf.nice.org.uk/drug/hydrox...

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

BNF Children

bnfc.nice.org.uk/drug/hydro...

NICE CKS

cks.nice.org.uk/anaemia-b12...

4) Change GPs?

nhs.uk/common-health-questi...

I'm not medically trained . I have written much longer replies recently which may have some useful info if you serach for them.

Cherylclaire profile image
CherylclaireForum Support

How wonderful that your GP has discovered a cure for Pernicious Anaemia ! Please ask him what the secret is, so that you can share it with the 8,000 people in the Pernicious Anaemia Society who have not been quite so lucky !

I certainly would not waste your valuable energy trying to educate the ineducable. Pernicious Anaemia is an incurable condition that, if treated correctly, will allow you to continue living. That's a basic starting point. If this is not already a given for your GP, then find another one. Preferably one that stayed awake beyond beriberi, pellagra and rickets during the "Vitamin Deficiencies" lecture !

Queeniz profile image
Queeniz

I got a letter today for a MRI scan .... good news bet you’re thinking?

No the appt was for this morning “After I got the letter”..... what is going on ???? It feels like they all want me to Die??? I give up anyway I’ve had enough of being pi**ed around :(

But the best bits to come lol they’re trying to say “It’s all in my head it’s my mental illness doing it” YAY Not 😢

I try to talk to my dad but he’s 71 yrs old & just tells me to “ don’t worry about it” hahahahaha he’s been saying that since I became ill with Hebephrenic Schizophrenia at 15yrs ..... so far that hasn’t helped !! Oh well x

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