Hi everyone! Hope you don't mind my continual posting I hope that my experience might help others who also come searching!
I managed to get a face to face with the GP from last week and my mum wanted to come to as back up. She initially repeated that I didn't have it and that she could say "categorically" that I didn't have PA because the intrinsic factor was negative. When my mum and I explained that the NHS guidelines said symptoms are more important than the inconclusive serum B12 test she then said she agreed that was the case and said my symptoms could be signs of a B12 deficiency! She also said that as B12 is just a vitamin theres no harm in trying (which has been my thoughts from the BEGINNING) When I then queried the fact you can have PA without intrinsic factor she again completely turned around and said OK so I understand what you're saying and your right you can have it! She then said "we don't want to get all caught up in the names of what you do or don't have testing this and that" (I thought it was a bit funny considering she u-turned on everything she had said) and said that she was giving me the B12 injections (5 loading doses 3 days apart and then 3 months after) and that after that they will never test my b12 again as the injections will make it sky high. She said if I get better following them then they will look at having them for life and I have my first injection this afternoon! I couldn't believe it I'm still so in shock I could cry! I have a few question for you all - she said they hurt which I have heard on here before but I'm typically quite good with pain and wondered if anyone can offer me any tips/advice on having them. Also how quick do you feel them start to work? I'm a little concerned about the fact that I only have the 5 doses then 3 monthly considering I have neurological symptoms but I was so in shock I got offered them I didn't want to argue. I'm also aware many on here recommend getting ferritin into optimal levels and mine is low - are there any high content supplements that work particularly well for absorption troubles and that are gentle on the stomach? Any further experience/help would be much appreciated!
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liaratsoni
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I can only say “very well done “ ,for being so persistent. It’s especially difficult when you feel so unwell .It was good to have your mother with you . Yes ,you should really be having the injections every 2 months , as you have neurological symptoms . But wait until you’ve had your loading doses , before you argue the toss on that one .
I’ve never felt any pain at all with B12 injections . But I now self-inject anyhow , and do it very slowly .
Thank you so much! My mum said she was so relieved she could have hugged her! That's exactly what I was thinking - see if there is improvement after the loading doses and if there is see if I go downhill and when it starts happening before I query it. I actually just got back and the nurse reiterated to me it would be very painful as she was doing it slowly and I didn't feel a thing! Interestingly she also said to me she saw on my record it said that I had discovered it and that I was very clever for doing so which sounds like the GP put that I do have it on my record. Thoroughly confused but I've got somewhere so I don't mind haha!
I hope they help you. You are supposed to continue every other day until no further improvements then go to 2 monthly with neurological symptoms. Im still having them every 2 weeks. Some do hurt. I've found taking an ice block to numb the area useful. Everyone is different. So glad you finally got listened to.
Thank you! I'm thinking about ordering the ampoules and self injecting for the "until no further improvements" phase because it was such a fight to get 5 injections every 3 days I can't see how I will get them to do that. How they think just 5 injections is going to rid me off tinnitus, pins and needles etc is beyond me haha
Further update - just checked my medical record online and it says "1mg three times a week for two weeks." So I'm supposed to be having six loading doses not five every 3 days! This plus the changing their minds about both the possibility of having B12 deficiency and PA in the space of a few minutes I think perfectly illustrates how getting diagnosed with and treated for this is so hard!
So glad to hear that you’re getting the ‘right’ treatment. My daughter was in the the same boat, but her GP was clearly quite proactive in her investigations and treatment of the symptoms. She’s currently on 3 monthly doses, had a full blood count test just before last B12 injection to check other vitamins. I’m not sure the GP is convinced it’s PA but I’m relieved (as is my daughter) that in the lack of another diagnosis she is treating it as such. Tests and referrals continue for my daughter to rule out all possible reasons. Then, I presume, PA will be accepted as diagnosis and the B12 injections will continue. She stated that the injections were not as painful as she was anticipating and the relief of symptoms were slow for her and was noted as being so by the nurse administering them. Just noticed you mentioned folate, my daughter was prescribed 3 months of folate, after her loading doses, as that was very low too. Good luck and hope you feel better soon.
Thank you for your response! My GP is the same seemed hesitant to say I had PA but implied I might and that if I respond well to the injections then I will be on them for life. If I might ask did your daughter have just the six loading doses then on to the 3 monthly? Did she notice symptoms receding after the loading doses or into the 3 monthly injections? Thank you
For your iron supplementation I recommend Spatone liquid iron supplement. My daughter and I both take it. This is the only iron supplement I've tried that doesn't upset my stomach. Blood tests seem to show that my body absorbs the iron in a liquid form better than a pill or capsule form.
She had loading doses in October 2018, followed by folate. I think she might have slipped through the cracks, a change of GP, but had first 3 monthly dose March and recently had another. She still gets tired but her foggy brain and dizziness seems to have gone. She’s awaiting blood test results, her Vit D was low too so GP suggested multivitamin and will review when results are back. She didn’t feel a sudden relief of symptoms but she certainly seems a bit more like her old self. The nurse was surprised that she actually felt worse after the first 2/3 loading doses, but with lots of rest and a very understanding manager she is going in the right direction.
they don't hurt any more than a standard injection. Slight sting for a second and then done. The only symptoms I had were fatigue and heart palpitations. After 4th loaded shot I feel completely well and back to my normal self - good luck!
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Update after seeing GP, let down and confused
B12 injections to buy - UK
B12 deficiency - more frequent injections
