Hi all, my left index fingertip has gone numb, and I am experiencing numbness that comes and goes in my right hand. I have autoimmune pernicious anaemia and autoimmune hypothyroidism. My question is, due to the numbness is it possible that I need more frequent injections of B12?.
I have had a battle this year with my GP who wanted to take me off B12 because my levels were high. I had to fight to have my B12 reinstated.
I also have Glaucoma, and have stopped responding to the eye drops. My eye pressures are in the 30`s, how long can my body cope. Could all these symptoms be related, because in my experience GO's don't seem to link anything together, they seem to just treat one symptom.
Is there anyone else who may have experienced the same, any advice please.
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Mannequin18
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You might need more B12 but if other symptoms (eg exhaustion) are fine maybe it could be something else such as Raynauds?
As a fellow glaucoma sufferer I’d urge you to seek further treatment as your eyes shouldn’t be left with pressures in the 30s. I’m on maximal eye drops in one eye (Cosopt and Monopost) and these have stabilised my pressure at around 13 whereas all other previous drop regimes didn’t. For my other eye I needed a trabeculectomy which has been successful and my pressure in that eye is around 8.
The specialist I used to have was content to watch me losing sight but I asked for a referral to Moorfields for a second opinion. They treated me much more aggressively and the sight loss stabilised.
I have been on Lumigan successfully for 14 years, but suddenly I am not responding to the treatment. I am now on Ganfort. We will see how that goes. They did put me on another, but that didn't work.
How many loading doses did you have at start of treatment? Perhaps you could ask for a repeat of loading doses if symptoms have deteriorated.
As you have a PA diagnosis, I suggest joining and talking to PAS if not already a member. They can sometimes intervene on behalf of their members and at very least can pass on useful info.
I'm sorry but I don't have any knowledge about glaucoma.
I did come across this article where optic neuropathy due to B12 deficiency was misdiagnosed as glaucoma. Aimed at doctors/researchers so uses scientific language.
I have B12 injections every 12weeks. I have been having them for 3 years now. Although I was diagnosed in 2008. But they always said my levels were okay. It was only when I moved area that I found a really good gp who said any problem should be treated.
Then we moved again, and sadly my now gp is rubbish. He took me off B12 because my levels were high. But as I said, I fought for them.
I am a member of PAS. And I have had great advice from them. I managed to arm myself with information to fight my corner.
I seem to have lots of symptoms that suggest lack of B12. But my GP is not interested, and doesn't seem to link these symptoms.
I had my 12 weekly injection today, and mentioned my symptoms to the nurse, who are all very good. She told me to mention it to my GP.
I just know from past experience I won't get anywhere.
I have numbness in my hands an feet due to b12 deficiency and can take a a long time to go. I have also read that is the nerve damage has been left untreated (Injections every other day) they may never totally heal. Hope you get more frequent injection and start to notice some improvements.
Choline b6 and b9 may also help nerves heal along side b12.
B12d.org have lot of information about how to self inject b12 safely and what to expect (timescales) and recommendations about where to get supplies. They even offer free advice via email.
Its a charity ran by GPs so is a reputable source.
Thank you for your reply. I have 3monthly injections. I don't take any vitamins, and my blood pressure is 170/90. Which is high for me. It is usually 119/80. But the doctors are not listening.
They recently gave me a pressure chart to fill in for a week. My pressures were very varied, but I had no response. Are doctors accountable in any way?
Barely anyone I know of who has PA does well on 3 monthly shots. I would increase. I highly suggest self injection. I have a prescription for every other day Hydroxo but I know of people doing well with once a week or one a month.
Hi, thank you. I was given this by a member before. I tried to join, but it just kept saying they were considering my request. That's as far as it went.
Hi, thank you. I have just sent another request. Hope I am successful this time. I had a B12 injection last week and I can honestly say I don't feel as if I have had one.
Thank you. I have just read that. It makes sense. My GP's don't seem to care or link anything together. I complained about my B12 treatment this year, and now things seem worse. But I am still glad I stood up to my bullying gp.
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