Need advice! Don’t know where to turn anymore

[Ashley8]

I was diagnosed with pernicious anemia a couple years ago. Since August of last year I have been on B12 injections. It was a battle to get those injections as doctor said that oral supplementation was “good enough”. I was finally able to convince him that I desperately needed them and he finally agreed. I was never put on loading injections and have just been monthly injections since August. My symptoms have not improved but instead feel worse. Recently I had my b12 levels tested and surprise surprise they came back within their “normal range”. Ever since injections it seems to hover in the 600 range and won’t budge. My folate is always usually high. I had the MMA and homocysteine levels tested as well and those were normal. I’m still having a lot of neurological and mental symptoms and it’s making it difficult to even get through the day. Symptoms are dizziness/lightheadedness, vision changes and severe light sensitivity, unsteady gait and balance issues (literally always need to be holding onto to something or someone at all times), severe mood swings (anger and rage), and depersonalization. I’ve also been diagnosed with epilepsy a couple years ago and not sure if it has anything to do with this or if I was misdiagnosed. My doctor writes me off because my lab numbers in his eyes are “normal”. I’m afraid I may still be very deficient and wonder if I am not converting B12 and possibly folate to a useable form for my body. I feel I really need to get these symptoms addressed soon as it is unbearable. Any advice on what I can do to make the doctor understand that I probably need more frequent injections? I live in the US and feel doctors here just don’t understand this condition so any advice is very much appreciated!

[wedgewood]

Yes , after your diagnosis of PA, you should have had loading doses of B12 injections .( 6 in 2 weeks ) Because of lack of Intrinsic Factor and stomach acid, PA patients can’t absorb B12 in their stomachs . Injections are needed for LIFE ! Oral supplementation will not work. In the U.K. , one would then get an injection every 3months ( Hydroxocobalamin , not Cynocobalamin) But with any neurological issues , then every 2 months . But for some patients , that is not sufficient and symptoms return before the next injection is due . That is where U.K. patients get trouble . I for instant have to self-inject once a week to keep feeling well. I have to obtain ampoules from Germany , as they are only obtainable here on prescription , which I cannot get . I have read that it is possible in the USA to get B12 injections in beauty parlours! But you might of course have some other quite different health issue . But you could think about self injection. Yes always take a folic acid supplementation . It acts with B12. What ever - you cannot overdose on B12 . Do read the book called “Could it be B12 “ by Sally Patchalok . Our Chairman Martyn Hooper has also written 2books about PA ( Amazon ) very well worth reading .

[Gambit62 Administrator]

Ashley8 - your levels haven't risen to and are now hovering around 600 - they will be astronomic after you have a B12 shot and then fall over time - so it just happens that at the point when they are being measured they have fallen to around 600 - a week later and they would probably be much lower .... and a week before and they would likely be much higher.

serum B12 levels really can't be used to manage a B12 absorption problem after loading doses have started and you really need to go by symptoms but not sure how you get that through to your GP.

Normal range is a statistical average of a large population of people, who haven't had B12 shots. Even in a population that hasn't had B12 shots there is a lot of variation amongst people with the result that if serum B12 is used as a single marker to determine B12 deficiency it will miss 25% of people who are B12 deficient.

B12 shots introduce a factor that means that the normal range really doesn't apply any more as raising levels of B12 in serum can result in a reaction that inhibits the transit of B12 from blood to your cells resulting in a functional B12 deficiency - this happens frequently enough for the symptoms of B12 deficiency with raised serum B12 is recognised as a symptom of conditions that can cause B12 levels in the blood to build up - such as renal and liver problems - it isn't documented well - scarcely at all - in relation to treating B12 with B12 shots but one very effective way of treating it is to keep B12 levels really high - which would mean more frequent injections.

Whilst it is generally true that functional B12 deficiency will result in raised MMA ad homocysteine levels there is some debate as to whether this is always the case.

B12 isn't toxic and isn't particularly expensive - particularly if you know how to do it yourself and don't incur the cost of a nurse to administer it.

You could try giving your GP a copy of Sally Pacholok's book 'Could it Be B12?' to read - which states the importance of not going on serum B1 in treating - as most people seem to need levels of 1000ng/L to feel well post injections.

You might also try pointing your GP at the area of the PAS website particularly aimed at helping medical professionals to improve the diagnosis and treatment of PA, ie a B12 absorption problem.

pernicious-anaemia-society....

[txstout]

Hi Ashley8,

I am in the US, Texas specifically. I was diagnosed with PA about 3 years ago by my GP. She has been very helpful, so dont give up on locating an MD that is knowledgable. I self inject once a week and my levels have rarely been above 650. I take Methylfolate 15 mg once a month. The B12 that we get here in the states is not optimal for our bodies. What I am using is Cyanocobalamin. Very hard to find Hydro or Methyl B-12 for injection here. I know some people order it from Germany, but it is cost prohibitive for me.

[Margaret-S]

So sorry to hear of your problems Ashley8. Doctors for the most part are appallingly unhelpful towards PA sufferers. It's the same here in the UK. I sincerely hope you get better treatment very soon. All the best ☺