Appoinment with gastroenteritis

[Kapat1]

Hi I've not written on this site for a while because I've been managing well with weekly self administered B12 injections . I feel I've been improving slowly and feel like my old self. Thanks to this site and the advise I received I took my health into my own hands.

So this brings me to the above mentioned appointment that I attended with my daughter yesterday. 6 months ago she had signs and symptoms of b12 and after a battle with GP she was put on a trial of injections . (She also has an under active thyroid .) Over the last 4 months she has greatly improved but still has bad days. At the appointment the consultant who in my opinion was an arrogant man was more interested why I thought my daughter had a deficiency with b12. He read the referral letter from our GP which was on his computer and just about ignored my daughter . He directed all the questions to me and I got the opinion that he thought I was an over anxious paranoid mother who googled a lot and just because I have PA then my daughter must have it too. The ignorance of this man was astounding. He as much said that because my daughter was such a young age (20 yrs) he even got that wrong he thought she was 16 yrs why subject her to a lifetime of injections when it might not be necessary! He went on to suggest it might be a placebo effect! And stopping injections would do her no harm .Anyway he has referred her for a endoscopy But feels there will be nothing sinister going on. I hope not! Unlike myself who has PA -looking straight at me he said u do know that this condition is a pre cancerous lesion.

[clivealive Forum Support]

Oh dear Kapat1 I am so sorry it was such a waste of time.

I wish both you and your daughter well.

[Kapat1 in reply to clivealive]

Thank you .

[Galixie]

It sounds like the pre cancerous lesion was that arrogant doctor! Also, while their is a higher incidence of some cancers in PA patients, it is certainly not guaranteed to develop so he's fear mongering as well.

If you're ever in that situation where the doctor is asking you questions instead of your daughter, make sure you prompt your daughter to answer the question directly so that he is forced to listen to his actual patient. Grr.

[Sleepybunny]

Sorry to hear about the difficult appt but sadly not surprised.

Has the consultant read this article on the PAS website about how there can be a family link in PA.

pernicious-anaemia-society....

It might be worth talking to the PAS about your experience.

pernicious-anaemia-society....

PAS tel no [phone]

They might be able to suggest useful info. In some cases they can intervene by writing letters on behalf of members but I think it's easier for them to help someone with a definite diagnosis of PA.

Has your daughter had an IFA (Intrinsic Factor Antibody test?

This can help to diagnose PA but is not always reliable. People can still have PA even with a negative result in IFA test.

This link is to a flowchart in the "BSH Cobalamin and Folate Guidelines". It gives guidance for UK doctors on when IFA test should be ordered and when a diagnosis of PA or Antibody Negative PA should be given.

stichtingb12tekort.nl/weten...

I'd suggest reading the whole "BSH Cobalamin and Folate Guidelines" if you have not already.

b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of B12 and Folate Deficiency" should be on page 3 or put "cobalamin and folate guidelines" in search box.

My understanding of the flowchart in the BSH cobalamin guidelines (I'm not a medic) is that someone who

1) has low B12 or is symptomatic for B12 deficiency with an in range B12 result

2) has had all causes of b12 deficiency (eg diet) other than PA excluded

3) has responded to B12 injections (eg symptoms have improved)

should be diagnosed with PA

It's possible that the consultant you saw may not be aware of the BSH guidelines. Some parts of the UK have local NHS guidelines on b12 deficiency. Some of these local guidelines have not been updated since the BSH Cobalamin guidelines came out.

When dealing with ill-informed medics I found fbirder 's summary of mainly UK b12 documents very useful. Link to his summary in third pinned post (last link in list).

Unhappy with treatment?

b12deficiency.info/b12-writ...

citizensadvice.org.uk/healt...

HDA patient care trust

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

hdapatientcaretrust.com/

I am not a medic just a person who has struggled to get a diagnosis.

There is a section on the PAS website for medical professionals. I gave a copy OF martyn hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" to my GPs.

pernicious-anaemia-society....

There may be stories on Martyn Hooper's blog that are relevant to you.

martynhooper.com/

[Kapat1 in reply to Sleepybunny]

Thank you for all ur speedy replies. I gave printed out relevant information to my GP months ago He showed little interest. And I think he must have mentioned this on the referral letter to the gastroenterologist for I feel the consultant manner was guarded before we even sat down!

[Sleepybunny]

I have in the past written a letter after a consultation where I felt the medic was not well-informed, listing evidence/research/blood test results that contradicted what the medic said. I didn't expect replies but I just wanted my view on file. My understanding is that letters have to be filed with a person's medical notes.