Question on necessity of blood thinning medication in relation to Pernicious Anaemia, once solved.

[AndreZ]

Hi everyone, I am new here, writing from the Netherlands. I have a question that I am struggling with:

After a 2 lungembolisms in 2013 and 2016 and many other symptoms I was (finally) diagnosed for Addison Biermer desease. Since then I have recovered quite strongly (95%). But as a consequence of the two cases of embolism I am prescribed for blood thinning medication for the rest of my life, which is "standard protocol" in the Netherlands.

However, research suggest that the lungembolisms likely were caused by the B12 deficiency. So I argued with my physician that now the root cause was found and eliminated (by regular B12 injections) the chance of further embolisms is likewise normalised. I suggested to stop with the blood thinning medication (Xarelto). My physician said there is no statistical correlation between embolisms and pernicious anemy and said I should stay on the blood thinning medication.

My question is twofold: Does anybody know whether this lack of statistical correlation is true (I found several places that does suggest a correlation), and I am very interested in any opinions on stopping with blood thinning medication in my situation.

To put it in another form of question: do people that have been diagnosed for PA, but did not have any embolisms in their clinical picture prescribed blood thinning medication or not at all?

Last remark: I realise that these are difficult questions (probably) and will not take any decisions lightly, but if safe enough I would like to stop with the blood thinning medication, because (a) I do not like to take unneccesary medication, (b) this medication requires a yearly check on the functioning of my kidneys (possible side effects of medication) and (c) my father died of at a young age of kidney failure so I may run serious risks there. I am afraid my physician wants to stick to protocol for safety/liability reasons...

Would love to hear any feedback on this.

Thanks in advance

André

[Gambit62 Administrator]

suggest you try looking at studies etc on pubmeds

Starter query

B12 lung embolism

only skimmed but this article suggests that your GP may be correct and the low B12 may be the result of treatment but I haven't read the article in detail

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

[AndreZ in reply to Gambit62]

Many thanks Gambit62, I will start a query on pubmed and see what comes up.

Best regards André

[Sleepybunny]

Hi,

I wondered if there might be any helpful information on the Dutch B12 website Stichting Tekort.

stichtingb12tekort.nl/

There are B12 support meetings in Netherlands which might be a source of information.

stichtingb12tekort.nl/helpe...

Addison Biermer disease

For anyone else reading this thread, Addison Biermer disease is another name for Pernicious Anaemia.

General Information about B12 deficiency including PA

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 is up to date with UK b12 guidelines.

"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.

PAS (Pernicious Anaemia Society)

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

pernicious-anaemia-society....

PAS tel no [phone] answerphone

B12 Deficiency Info website

b12deficiency.info/

I am not medically trained.

[AndreZ in reply to Sleepybunny]

Dear Sleepybunny,

thanks for your reply. I know of stichting B12tekort but was not aware that there were support meetings. Will look into your leads.

Best regards André

[Sleepybunny in reply to AndreZ]

Hi,

Sally Pacholok's book is available in Dutch "Is het misschien vitamine B12 tekort?: een epidemie van verkeerde diagnoses" .