I was diagnosed with B12 deficiency in November. My level was 88.

[peteteds]

I had the boosting injections over the 2 weeks and am due my next injection now, 3 months later. I feel really poorly again now. Should I have had a blood test to check my level at some point?

[nostoneunturned]

You really need to know that if you are a member of the Pernicious Anaemia Society:

pernicious-anaemia-society.org

you will gain access to a helpline with a medically qualified person who can answer any questions, and you can also access informative downloads. Forums are open and very educational.

On this next link there is more information you undoubtedly need:

b12d.org/b12-deficiency-pro....

With a level of 88 you must have neurological symptoms (tiredness, tingling, numbness, shooting pains, etc.) but you will find all symptoms listed and you will probably realise you have neurological symptoms you have not recognised as such.

The above link also quotes the current British National Formulary instructions to doctors on the treatment of PA without neurological symptoms, and the different treatment which those who have neurological symptoms must have. Essentially the BNF dictates that those with neurological symptoms should have "initially 1mg on alternate days until no further improvement then 1mg every 2 months."

The vital words "until no further improvement" means that, if you have or had neurological symptoms, and it is difficult to imagine you have not, then you are entitled to injections every second day until the neurological symptoms abate. That could be quite a while, but that is your entitlement if you have neurological symptoms.

You certainly should have blood tests to check your levels before injections, not after when the B12 level will be very high. The PA Society helpline will be able to help in this and other matters. Your folate levels should also have been checked as the B12 used in injections in the UK is hydroxocobalamin which must go through the methylation process involving folate before it can be used by the body cells. Optimal levels of folate are when your folate level is up about 3/4 of the range, it is not enough to be just in range for without enough folate to engage in the methylation process then some of the injected B12 will simply be lost

Many PA Society members use sublingual B12 in methylcobalamin form between injections but in the full knowledge that doing this will skew the results of any tests and so affect the GPs assessment of the B12 levels achieved. It is not advisable to take supplemental B12 right now as it has test-skewing potential, you really need to get your doctor to treat you correctly which might not be the case right now. Do tell GP you feel poorly and exactly how.

You are entitled to be given a copy of blood tests, just ask.

I trust this will help.

[peteteds in reply to nostoneunturned]

Thank you very much for your reply. I have complained for a number of year about by tiredness but was told that as I work full time and have children I am bound to be tired. I often felt that I could fall asleep whilst driving and working and have struggled with my memory for quite a period of time, trying to cover that I was struggling to remember words on a daily basis. This has improved since the injections but I am suffering again now and it feels worse than before which i am sure is because now I know I can feel better. Is 88 particularly low?

[nostoneunturned]

It utterly enrages me that women are put off by doctors in the way you were put off, so many are condemned to struggling through life by the complacency of doctors who cannot be bothered even to investigate, just remark it is a woman's lot to be tired. I had the same brush-off for years of hell but was hypothyroid (Hashimoto's) with declining levels of B12 all the time, Niece had your experience in USA, patronising doctor told her for years exactly what you were told.. I could write a book, like many others on here who have some truly dreadful experiences to recount.

88 seems to me to be a very low level, even if you do not quote the range which varies from lab to lab. But anyone can see that 88 is really low. I was 167 (180-900) 13 below the bottom of the range so I have a good idea of how you feel - just wiped out. Please pursue the links I gave you when you have the time, they are very important to you in getting the correct treatment. Failing memory is one of the neurological symptoms.

One reason for your feeling worse than before is that once the body receives some B12 the body falls on it and tries to use it for just about everything that has been functioning below par for too long but the temporary boost ends and you can certainly feel worse when that happens. The body uses the B12 to make new red blood cells (RBC), for this it needs folate and potassium but when these are lacking then a proportion of the injected B12 is lost to the body. You can help by eating blackstrap molasses and bananas, BSM high in potassium, iron, chromium, etc., bananas high in much needed potassium.

Was a full blood count (FBC) done at the same time as the B12? Have you had a diagnosis of Pernicious Anaemia which is caused by Intrinsic Factor antibodies? Or are you B12 deficient from some other cause like low stomach acid, and parietal cell antibodies? Folate, ferritin should have been tested at the same time, please make sure they were by getting a copy of the blood test done, it is your right to be given this when you ask.

Was your thyroid function also tested?

In addition to the links I gave you might also read "Pernicious Anaemia: the Forgotten Illness" by Martin Hooper, who started the PA Society after diagnosis of severe PA.

[mommer]

Peteteds I hear you!! I can sense the frustration in your few posts. I am a newbie here (just posted a bit of info and a question for myself) and I am always looking for answers/help/thoughts from someone with the same issues. I wish you the best in your search for answers and better health : )

Nostoneunturned .... you are a wealth of information!!! Wonderful to hear and read your info to Peteteds!