Hi everyone, hope you are well. My supplies arrived today from Germany and Medisave but I am unsure how to proceed. I had my last B12 injection 2.5 weeks ago and was told they wouldn’t give me anymore until I had another blood test to check my B12 and folate levels as both of the GP Partners were concerned that I had more than the loading dose. The results are:
I had a phone consultation with one of the GP Partners who was somewhat short with me and said my levels were really high so my tingling/numbness didn’t make sense. She did ask a lot of questions and said the issue was above a GP and they hadn’t come across this before so she wanted to clarify with a Hematologist how to move forward. The Hematologist wanted a GP to do a physical exam with me and if any issues to refer me to Neurology as I reported that most of my symptoms were on the right side which he thought was odd. So I had a very thorough check with one of the GP’s who asked a lot of questions, did blood pressure, reflexes, eyes, balance. She was lovely. I said I would like to resume more aggressive treatment as I felt it was working and was told she would need to report back to the partner GP and then let me know. She reported back that she found nothing wrong. Unsurprisingly I now have in my notes in capitals that I can have B12 every 3 months for life but no more than every 3 months as per the Hematologist advice and it can only be administered by the practice nurse. So I was expecting this hence getting my own supplies but now how to proceed.
Some symptoms have gone: breathlessness, tiredness, feeling off balance and dizzy. And feeling very cold has also gone. What remains is this constantly varying mild to moderate, sometimes tingling, sometimes numbness, sometimes a very dull ache. The sensations are very uncomfortable but and are mainly in my right hand side, foot and hand and to a far less degree on my left side. I find hot water bottles soothing but I am able to function as per normal. I also get a strange tingling on the roof of my mouth on and off. Hopefully this constant variation is a sign of healing. The brain fog is still the same but I am sure I have cross over symptoms with Peri menopause. Should I just monitor my symptoms and wait 2.5 months for my next injection and see how I get on or ask hubby to start injections?
Thanks in advance.
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newbiegirl
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It still surprises me when I read posts like yours at the lack of education many GP's still have around PA.
My GP knows I self inject, yet one of the other GP's almost had a panic attack when she saw my results were >2000 when checking my low Folate levels. I tried explaining they will be that high but she believes it's dangerous, my nurse and my GP said if it's helping carry on, which it is, so I am.
Also, the NICE guidelines have changed now from every three months to every 2-3 months.
The symptoms you describe, mine were the same, but the tingling in my feet and hands didn't appear until around the third injection. But because of the amazing people on here and researching, I learned it was the damaged nerves healing which was causing it.
I think it was in 2017/18 I was diagnosed with PA, and started to SI every other day, (the nurse at my surgery said this is how often I should be getting them until symptoms eased). She showed where, and how to SI.
Over the past 6 months I now inject once per week and seem to be fine on that.
If it starts to effect your feet to the point they are not just tingling, but also painful to walk, I can highly recommend Jóya shoes. They're very expensive, and It took me a year or so to convince myself I needed to spend the most I've ever spent on something like that.
At £179.99 for a pair of trainers, I can honestly say it's the best money I have ever spent.
Thanks for sharing Ritchie. I did not get any of the numbness/tingling until after my loading dose. I am new to this so very much finding my way to what is now ‘normal’. I am a big footwear fan so shall take a look at those trainers 👍
You're very welcome.It's so very daunting initially isn't it!
I remember my GP first telling me I had Folate deficiency, B12 definiciency, Macrocytic anemia and PA, I'd heard of none of them before.
When I asked what it all meant, he just said injections for life.
That's when I joined here and started to learn from others.
I know it was years of Opiate medication that caused mine.
We learn so much as we go and I'm still learning.
My brain fog is still there, many say: "it's your age" I just reply: "Nope, don't take drugs" 😁
You will get other replies from those more experienced than me as I'm still learning, and I owe this place and the Pernicious anemia society so many thanks.
Yes it is somewhat overwhelming but I am learning a lot from reading the posts here and I have joined the Pernicious Anemia Society. I will hopefully figure it out bit by bit and by trial and error no doubt.
Perhaps you could write a short letter to haematologist asking if it's possible to have injections every 2 months and maybe referring to BNF guidance which says maintenance injections every 2- 3 months if no neuro symptoms and every 2 months if neuro symptoms present.
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 improvement or deterioration in symptoms to show GP/specialist.
If your diary shows symptoms are returning or worsening or new symptoms are appearing a few weeks before your next NHS jab is due that may be enough to get GP/specialist to recommend that you get your injections more often.
I had to resort to treating myself years ago because NHS refused to treat me. I was lucky to avoid permanent dementia and spinal damage, I already had dementia type symptoms and symptoms affecting my spinal area.
It took weeks (months for some symptoms and years for a few) of treating myself to see some improvement and I wish I'd started self treatment sooner.
If you have neuro symptoms especially symptoms affecting your spinal area then may be worth drawing GPs/specialist's attention to the increased risk of permanent neurological damage if B12 deficiency is untreated or under treated in any letter or conversation with them.
My experience was that GPs and specialists don't like to have their opinions challenged...I had some unpleasant experiences but I suggest weighing up the consequences of possibly upsetting doctors with the potential consequences of not getting adequate treatment.
I would suggest putting any queries about treatment into a short letter and keeping a copy. Letters are harder to ignore in my opinion.
If you have neuro symptoms I suggest you push for a referral to a neurologist. I used to put requests for a referral into a short polite letter to GP and I included evidence that supported the request eg extracts from UK B12 documents, symptoms lists, relevant family medical history etc.
Be warned that just like some GPs and some haematologists, there are some neurologists whose understanding of B12 deficiency is not what it should be.
This is a link to a forum thread started by someone who had neurological symptoms.
I left detailed replies on this thread including a list of neurological symptoms.
Thank you. I will keep a careful note of symptoms and take it from there. I have had a pretty good experience with my GP’s so far so will try to keep them on board as much as possible.
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