Hi, this morning I have had a telephone appointment with my doctor. I had the appointment because I wanted to bring my b12 injections from 3 monthly to 2 monthly as a minimum as I’m not feeling any benefits from the injections at all, in fact I feel my symptoms are getting worse.
He has told me that because the latest B12 bloods (taken in June) were 536 which is up from the 102 it was originally when diagnosed with PA in May that I do not need more frequent injections- is this correct please?
Thanks 😊
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Sassybob
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No that is not correct .If you have pernicious Anaemia , your injections are for LIFE , no need to test your blood for B12 levels . This is official guidance . It doesn’t make any difference if you have tested negative for Intrinsic factor antibodies . If you have tested negative , but have symptoms that cannot be ascribed to other causes of B12 deficiency , you are then deemed as having Antibody negative P.A. ( AbNegPA) If 3 monthly does not relieve your symptoms you are entitled to have 2 monthly.
Ask your doctor to read the LATEST guide lines ( and to follow them .
.Many do not )
If you get no help and feel so unwell , you may have to resort to self-injecting , as I did when i was desperate beyond belief . You will always get help here .Best wishes .
Thanks so much for your reply, I did think from posts that I’d read on here that it wasn’t quite right. He’s going to do more blood tests for vitamin c and a few others as he’s of the mind that it can’t be my b12 causing my symptoms because the latest results are all in range (he wants to test my b12 again just before my next injection which is in December). Please may I ask if you now feel better self injecting compared to how you were with only doctor prescribed B12 injections?
As you are being treated , your B12 readings will always be in range . That is of no consequence at all . If he understood PA / b12 deficiency at all he would know that . If he , she reads the latest guidelines he/she would know that testing is a waste of time . THEY MUST BE in READ ! I feel 150 % better now i self inject . I was only allowed 3 monthly like you . Would not let me have 2 injections monthly , although I had a positive IFAB reading and numb feet which were pronounced “idiopathic “ I was never referred to any specialist to try to find out the reason for the numb feet ( It was P.A. causing it of course . ) With self injecting i was able to get rid of the vile symptoms and turn my numb feet into “burning feet “ . ( not hot to the touch , but that’s how they feel to me . keeps me awake at night sometimes )
That is now a permanency . But after self injecting for 6 years , I can say that I prefer Self-injecting to the surgery ‘s .I can inject totally painlessly !
Thank you, that’s exactly what I thought but my gp doesn’t think so unfortunately. I’m seriously considering SI but it’s a huge step from the 3 monthly injections I have currently so need to have a look into it as I just want to feel “normal” again - I know that’s what everyone is striving for…….
I gave up on my GP in the end and started to self inject. This was over two years ago and to be honest feel so much better, if only to feel in control. With a diagnosis of P.A. I’d say your GP is being negligent, Good luck.
Point 1 is about under treatment of B12 deficiency with neurological symptoms.
"in fact I feel my symptoms are getting worse."
Symptoms Diary
I suggest you consider keeping a daily symptoms diary which tracks changes in symptoms over time and if and when any treatment is received. This could be useful evidence of any improvement or deterioration in symptoms to show GP/specialist.
You could draw GPs attention in any letter or conversation to the increased risk of permanent neurological damage including damage to spinal cord if a patient with B12 deficiency is untreated or under treated.
Thank you for all the information, I will take a look at everything- I’m not a member of PAS yet but have looked at their website for general info.To give a better background to my situation- I contacted my gp in April this year as my memory was becoming really bad (I’m 42 yrs & female) and honestly thought I had early onset of dementia, I’m always tired and have terrible tinnitus (are these neurological symptoms?) The doctors took my bloods and discovered my b12 was low at 102 so assumed it was that that was causing my bad memory. I received 2 weeks of 6 loading doses then 3 monthly injections- I’ve only had 1 so far in September and I’m not due next until December. I currently feel so lethargic, can’t exercise for more than 5 mins and my anxiety is awful, I just feel that I’m in permanent dream state and the world is passing me by. I don’t know whether these are normal symptoms for PA but the world feels very lonely at the minute. 😊
Welcome. Yes, I can relate to your symptoms. I couldn’t remember which door was the way out of my flat, they are all the same. I couldn’t remember what a U or W looked like. Yes, tinnitus, and unfortunately, mood changes are common. Lethargy, fatigue, exercise intolerance as well. So, learning to pace yourself - do a task, rest. Another task rest.
The problem comes if, even after you have fought and won for two-monthly injections, they are still not enough.
My wife needs injections monthly, we find, in normal life; and twice now when we have been on cruises, and thus more active, fortnightly has been better.
Subjectively, she feels that the more she does, the faster the B12 gets ‘used up’. We don’t know if this is objectively true, but it seems plausible.
To us as well, SI seemed like a big step, but we got a lot of advice and encouragement from our local PAS group, and now we have it down to a T. And the ‘Raggedy Annie doll’ who went to the first meeting was replaced by a functioning human being for the next one.
You’re never back to 100%, if your PA has gone undetected for too long and you get the peripheral neuropathy symptoms that you need to show just to get two-monthly injections. But at least you can function to the best level you can.
And SI-ing unchains you from the medicos, and from their inability to apply even the published guidelines, whether that is because they don’t read them, or because even if they do, these are being overridden by unpublished rules applied from above. (And yes, you know who you are, *****shire).
Totally agree with ‘the more you do the more you need’. My GP says that is all in the mind, but we know differently. I’m a busy person, so don’t have time to think about when next jab is due, but my body tells me and that’s good enough for me.
GP can also find the info on BNF treatment patterns in their BNF book Chapter 9 Section 1.2
Have you considered asking GP in a brief, polite letter to put you on the BNF treatment pattern for B12 deficiency WITH neuro symptoms which is ......
A B12 loading injections every other day for as long as symptoms continue to improve then a B12 maintenance injection every 2 months.
There is no set time limit as to how long the every other day loading injections can continue for . Could be weeks even months of them.
You only had 6 loading jabs over 2 weeks so you may want to ask to start every other day loading injections.
Point 1 in the letter writing link I mentioned previously has a letter template for writing to GP about being under treated for B12 deficiency with neurological symptoms.
Sadly as you may be finding out some GPs and specialist doctors are not as well informed about B12 deficiency and PA as they should be. Sometimes you have to fight to get adequate treatment and it can be a lonely process if people around you don't really understand what you are going through. There is always support on this forum.
PAS (Pernicious Anaemia Society) can offer support and pass on useful info
Some UK members on forum find that NHS treatment is not enough for them and resort to self treatment. My feeling is that this is a last resort but I was driven to treat myself when all chances of getting NHS treatment ended.
Good luck and I hope you get the treatment you need.
Just a thought, have you had other blood tests done to check your full blood count to check for anaemia (vit b12 def can cause macrocyctic anaemia) iron/vit d, sodium, potassium, magnesium levels and Hb1ac,to rule out diabetes , liver, kidney biochem? Has your Gp considered what could be causing your lack of b12? Have you had intrinsic factor antibodies checked - this is the test for PA but if it’s negative it doesn’t mean you don’t have PA?Are you vegetarian, coeliac, sibo, taking ppis eg omeprazole? PA is not the only cause of b12 deficiency. Tinnitus is neurological but there are many other causes other than b12 def. is it possible that your symptoms are being caused by something else but as you were low in b12 your Gp is treating this first to see if it helps. It Is possible to have b12 def and have no symptoms, my friend had this but she still needs injections otherwise she could go on to have problems caused by b12 def. it might be worth asking your Gp about other possible causes before assuming it’s b12 def causing your symptoms. You were definitely b12 deficient and need injections but worth checking that nothing else is going on. Lots of us with b12 absorption problems also have problems absorbing iron. Good luck.
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