Macrocytic anaemia ??

[Numbsew]

At my last GP visit he told me the reason he stopped my injections in March (I now self inject daily) was that the haematologist told him that he should on no account be prescribing b12 injections because I do not have macrocytic anaemia. He said that hydroxycobalamin is unlicensed in UK for use without. is this correct? And if so, what happens to those of us who have PA without macrocytes? My IF test came back negative so I am left with nothing except my clear response to treatment.

[Numbsew]

I definitely will do. Thank you

[Nackapan]

That is rubbish. I have b12 injections and am not anaemic or even tested positive for PA. I got them because of low b12 serum blood test 106 and symptoms

[Sleepybunny]

Hi,

If you look through BSH Cobalamin and Folate Guidelines you should find some useful quotes to shove under the haematologist's nose to refute what they have said.

BSH Cobalamin and Folate Guidelines

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

Maybe they would like to read this article from Dutch B12 website

Misconceptions about a B12 deficiency

stichtingb12tekort.nl/weten...

"My IF test came back negative so I am left with nothing except my clear response to treatment. "

Think haemo ought to look at this page from guidelines that mentions Antibody Negative PA and that doctors should consider continuing treatment if there has been a clinical response eg symptoms have clearly improved.

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

See Point 12 in this next link which in turn links to a site with a list of articles that says macrocytosis is not always present in those with PA and other causes of B12 deficiency.

b12deficiency.info/b12-writ...

[Sleepybunny]

Hi,

If you're a PAS member then you could talk to PAS about your experience with haematologist and GP. I think the PAS chairman might find it interesting that haematologist told GP that "he should on no account be prescribing b12 injections because I do not have macrocytic anaemia"

It costs about £20 to join for a year's basic membership.

pernicious-anaemia-society....

They should be able to point you to useful info to pass on to both GP and haematologist.

You do not have to have a confirmed PA diagnosis to be a PAS member. In some cases they support members who are seeking a PA diagnosis.

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

PAS members can access articles and leaflets in PAS library on website eg

" An Update for Medical Professionals: Diagnosis and Treatment "

"Treatment is for life "

pernicious-anaemia-society....

You could refer haematologist and GP to section on PAS website for health professionals. They might both benefit from joining PAS as associate members and it is free for them.

pernicious-anaemia-society....

Do you have a PAS support group close to you? Support groups can be a useful source of info on helpful GPs and specialists and members can share their experiences , good and bad.

pernicious-anaemia-society....

[Cherylclaire Forum Support]

Re. Macrocytic red blood cells being used as the only marker for Pernicious Anaemia: BCSH guidelines say ".....However, the majority of patients do not have such a clear-cut picture. Neurological presentation may occur in the absence of haematological changes, and early treatment is essential to avoid permanent neurological disability."

This was published in 2014 by the committee who write the standards for haematology in Britain.

The NHS Atlas of Variation in Diagnostic Services (Public Health England) say , regarding B12 testing :

"The degree of variation observed in vitamin B12 testing appears to be greater than can be explained by differences in the prevalence of the conditions or deficiencies for which vitamin B12 tests are used...….some may stipulate only when haematological indices indicate possible megaloblastic change. It is important to be aware that neurological disorders related to vitamin B12 deficiency may occur in the absence of any haematological change."

So there we are - hardly seems worth the risk, does it ? -Your GP is wrong, the haematologist is wrong, and you are not being treated properly if they are only concerned with the size of your red blood cells.

This information and above quotes are from Martyn Hooper's book, "What You Need to Know About Pernicious Anaemia & Vitamin B12 Deficiency." Might be worth a read. He is the founder of the Pernicious Anaemia Society and is mentioned above by Sleepybunny .

Best of luck, Numbsew

[Sleepybunny]

Hi,

B12 books I found useful

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not mention recent change to BNF guidance on B12 treatment.

pernicious-anaemia-society....

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

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

Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

[Numbsew]

Thank you for all the info and encouragement. I have made an appointment with the GP to discuss the situation again. I am so weary of trying to prove that I have a deficiency when it is such a no brainier. I just don’t understand why it’s such a fight to get what is a very basic treatment, in 2019. They would give me toxic antidepressants in a heartbeat.

[Sleepybunny in reply to Numbsew]

Hi,

I may have mentioned on one of your other threads that in my opinion it's more effective to put queries about treatment/diagnosis into a letter to GP.

In UK, my understanding is that letters to GP are filed with a person's medical records and are therefore harder to ignore than info passed on verbally which GP may forget or info on photocopies which cynically I think may get filed in the bin.

Letters to GP could contain symptoms, blood test results, personal and family medical history, extracts from B12 documents, any evidence that backs up what you want to say.

I suggest keeping own copies of any letters written in case GPs lose theirs.

Might be worth ensuring letters reach GPs before an appointment as this gives GP time to digest the information and do their own research.

Next link has letter templates that people can use to write letters to GP about B12 deficiency.

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

"I am so weary of trying to prove that I have a deficiency when it is such a no brainier"

I empathise.....I have had symptoms for over 20 years which deteriorated slowly for many years.

All I ever had in terms of B12 treatment was one set of loading doses after a low B12 result then nothing, despite typical symptoms including many neurological, because my results were normal range. At the time I got loading doses I didn't know what I know now, I trusted the GPs and was unaware of guidelines so went years without treatment.

When I finally put the pieces of the jigsaw together I did everything I could to get GPs/specialists to treat me but no joy. Life at times felt unbearable so I eventually started treating myself. It was that or deteriorate into dementia and potential spinal damage.

Some members on the forum accept that they are not going to get a confirmed diagnosis of PA or of B12 deficiency. I don't have a confirmed diagnosis and have accepted I probably never will but what I do know is that my symptoms are typical and come back with a vengeance if I ever stop taking B12.

Sometimes I feel it can get to the point that it's not worth continuing to fight GP for treatment/diagnosis.

Blog post about how PAS supports those seeking PA diagnosis.

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

Blog post comparing treatment of those with PA with those whose diagnosis is B12 deficiency

b12deficiency.info/blog/201...

Some GPs are unwilling to listen and some don't respond well to assertive patients. Be prepared for GP/patient relationship to suffer. Pressure was put on me to leave one GP surgery.

Do you have another GP surgery you can go to if this happens?

Do you have the resources to continue to treat yourself if you can't get NHS treatment?

I think about all those people out there who do not have access to the information on this forum and who may be suffering.