My first post and question. - Pernicious Anaemi...

Pernicious Anaemia Society

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My first post and question.

getfitviv profile image
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I am wating to go for a blood test for PA but because I feel so ill (dizzy,tired,tinnitus) my daughter has bought me some B12 Boost oral spray. My question is if I start to use this straight away will it affect my blood results?

Viv

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getfitviv
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Foggyme profile image
FoggymeAdministrator

Hi Getfitviv and welcome. The short answer is yes it will. Your B12 levels will increase and you will find it difficult to get a B12 deficiency diagnosis, since you will never be able to tell how low your B12 levels might have been.

I assume that your GP will also do a serum B12, at least?

The PA / IF tests are only 50% accurate...you can test negative but still have PA. the crucial thing is if you test negative for PA and your B12 levels have increased because of supplementation, then your GP will be very unlikely to prescribe B12 injections. However, if you test negative for PA (which many do), and your B12 is found to be low, then your GP will be more likely to prescribe the B12 injections (which it sounds as if you need).

So...I know it's not easy when you feel so ill but it would be better if you could hold off for a little longer, and wait until your blood tests have been done.

Please be aware that some GP's will tell you that your result is normal when the levels are bumping along at the bottom of the range. This is not good enough for some (if not most) people.

If you ask for a copy of your results (something you are entitled to do) and post them here, together with the reference ranges, then people will be able to help you with interpreting the results.

Very good luck and please let us know how it goes xx

getfitviv profile image
getfitviv in reply to Foggyme

Thank you, that has been very helpful. I will take notes and make sure they do all they should and get my results. My doctor said my blood count was fine and but for my daughter insisting on a PA test that would have been it.

I will get back after the results and let you know. xx

Sleepybunny profile image
Sleepybunny

Hi,

link about b12 testing

b12deficiency.info/b12-test...

Have you looked at PAS website?

pernicious-anaemia-society....

"My doctor said my blood count was fine"

I assume they were talking about the full blood count (FBC). high MCV and high MCh on the FBC can indicate the possibility of macrocytosis (enlarged red blood cells). Have you had folate , ferritin, iron tests as well as the B12 test? Macrocytosis can be found in people with low B12 and low folate. If a person w ith low B12/low folate also has low iron then macrocytosis can be masked because low iron can lead to microcytic (small) red blood cells.

patient.info/doctor/pernici...

labtestsonline.org.uk/under...

patient.info/doctor/macrocy...

Did you see a copy of your test result? I learnt from experience that what I was told was fine/normal to my face or ocer teh phone was not always fine/normal when I saw the results on a copy. I now always get copiesof my test results.

B12 books

I found the following 2 books very useful.

What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency by martyn hooper

"Could It Be b12" by Sally Pacholok and JJ. Stuart

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

My understanding is that in the UK people who are symptomatic for B12 deficiency are supposed to be tretaed even if b12 blodo levels are normal range. See docuemnts below.

1) BCSH Cobalamin and Folate guidelines

2) bmj.com/content/349/bmj.g5226

B12 symptoms lists

I gave a copy of PAS Symptoms list to my Gps with all my symptoms ticked.

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12deficiency.info/what-to-...

getfitviv profile image
getfitviv in reply to Sleepybunny

Hi, I haven't had my blood test yet it's tomorrow (25th Aug). I have a list of questions for the nurse and your reply has helped. It's unbelievable how little we are told by our doctors so I am going to start reading your recommended books and the information you give.

Many thanks.

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