Hello, I started on the b12 injections around January (? memory shocking!) and still not feeling there has been a great improvement with all my symptoms, tiredness in particular.My test result for B12 was 236 (previous test was lower but nothing was done because I was still within range - had to almost beg for something to get done). As well as my symptoms, I did test positve for having gastric paretial cell antibodies and I had raised MCV - 102. The most recent b12 test came back at 630 and am worried now that my GP will stop the jags because I was just "on trial.". I had the Vitamin D test which came back at 36 and the Calcium test which came back just below normal (?) so my GP put me on Accrete D3. I was retested for the calcium at the same time as the B12 and it has now come back at -207. I'm seeing my GP on Thursday to discuss the results and would appreciate any comments.
B12 results: Hello, I started on the b... - Pernicious Anaemi...
B12 results
Hi Molly Jane,
Welcome here! Perhaps its easiest for me to refer you to alanduke's post I have just replied to as its applicable to your question.
See:
healthunlocked.com/pasoc/po...
I hope this helps, I know little about vit D so can not comment,
Kind regards,
Marre.
Hi Marre, I did try and respond to you earlier but I wasn't able to submit my reply - something to do with permission? Anyway, I just wanted to thank you for your reply. I did try and read both links but I wasn't properly understanding. I'll try again tomorrow when hopefully things will be clearer to me x
Hi Mollyjane,
Not sure what happened for you when you tried to reply, but anyway you should not be worried as a serum level of 630 after treatment with B12 injections is not that high, more or less what can be expected, although different people seem to do very different things with the injected B12. There are those that end up with serum levels well over the 1000, yours is really not that high after receiving 1000 mcg of B12 since January (how often?)
Symptoms are just as important as test results. Are the B12 jabs helping you?
If you can get copies of your blood test to see what has or not been tested, if your MCV is now normal and if your serum folate has been tested and ferritin (=iron storage). Low folate can also cause raised MCV, and when B12 treatment has started an increased demand is made on folate and iron, so storages can get depleted with B12 treatment. Also it is worth knowing if you have had thyroid function tested as this can also be a reason for raised MCV and gastric parietal cell antibodies.
Positive gastric parietal cell antibodies may cause gastric acid achlorhydria (stomach acid is not acidic enough) and as such a progression to PA, be cause the acidity is wrong for IF to survive and take up of B12 needs IF. It is possible that different people have different levels of acidity which means different levels of still working IF with B12 still being taken up, and or recycled, this proses could also still over time diminish, so no reason what so ever to take you off B12 jabs. Lots of reasons to keep an eye out for iron def as iron needs a certain PH (acidity) to be taken up and can also get depleted. Folate needs B12 to be metabolised, and visa versa, other B vits and minerals are also need, so good to have folate levels tested once on B12 treatment and to take a multy (B) vitamin to make sure all others are in good supply.
I hope this helps you, explains a bit more, I got carried away a bit!
Kind regards,
Marre.
Hello Marre, yes that makes perfect sense. 630 is quite low considering I've had 7 injections in 22 weeks. I had the loading dose of 5 and asked my GP at the time if needed could I get the next dose before the 3 months were up. I was told that it would be "as required". I did feel a bit better but it didnt last. I went back after 5 weeks to get my next jab and the nurse didn't seem to happy that I was there so soon. I was back 5 weeks after that and saw a different nurse and explained again that my GP had said "as required" I got the jab and the nurse said she would speak to my GP regarding how often i should be getting the B12. It turns out that "as required" meant maybe around 10 weeks. After week 10 I went back and got the B12 blood test before I got my jab. I've had folate and ferritin tested recently and they are both fine. My MCV level has come down to 93. I have had my thyroid tested and it flagged up TPO antibodies at 16, which is not enough to treat. This has to be monitored annually. MJ x
Hope your GP stays on side re "as required" , perhaps find out if they will teach you how to self inject, it will save the surgery money (possibly stop the nurses complaining if you come in to early) and will give you the freedom to buy privately more B12 should you need it. Its what I did, and its been the best thing I learnt! I used to faint if I saw a needle, but its very different if you do it yourself, plus you can make sure you do not hurt yourself, if you learn how to. So try to get permission, learn how to self inject is what I'd do. As you are monitored anyway for thyroid it will be an easy way for them to check compliance. Marre.
Hello Marre, I spoke with my GP and mentioned that the only real difference I felt was after the loading dose (headache free and a slight improvement with tiredness - both short lived). I also mentioned where it says about neurological symptoms and an injection every other day until no further improvement. Since I have tingling in my hands and feet and occasionally one of my toes goes completely numb, my GP is going to speak to a hemotologist as she is not sure about side effects. I also said that I would be willing to self medicate but again she would rather I wait until she has spoken to the hemotologist. I am going to be well one way or another x
Hi Mollyjane,
All at least going the right way! No known harm from to much B12, if she comes up with to much is bad for you please ask her to come up with any research details..we all would be very interested to see something in writing..currently there is no evidence of harm.
Marre.