Numbness in fingertips, and hand. I h... - Pernicious Anaemi...

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Numbness in fingertips, and hand. I have PA and Hypothyroidism.

Mannequin18 profile image

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.

20 Replies

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.

Good luck.

Mannequin18 profile image
Mannequin18 in reply to JanD236

Thank you for that. It is very worrying. I am having 3 monthly appointments at the moment.

I have been on Lumigan for 14years, succ

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.

Hi,

How often are you currently getting B12 jabs?

Numbness would usually be considered as a neurological symptom.

I think you have mentioned other neuro problems on older threads.

Recommended UK treatment for B12 deficiency WITH neuro symptoms is...

A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months

BNF (British National Formulary)

bnf.nice.org.uk/drug/hydrox...

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

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.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

Link about writing to GP if under treated for B12 deficiency with neuro symptoms

b12deficiency.info/b12-writ...

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.

ncbi.nlm.nih.gov/pmc/articl...

I am not medically trained.

Thank you for your very detailed reply.

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.

Jadeo09 profile image
Jadeo09 in reply to Mannequin18

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.

Mannequin18 profile image
Mannequin18 in reply to Jadeo09

Thank you for your reply. I will look into vitamins.

Jadeo09 profile image
Jadeo09 in reply to Mannequin18

You're welcome!

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.

What level of folic acid supplements are you taking to support B12 in the repair of neurological damage?

Are you taking a daily multivitamin as well?

How frequent are your B12 injections currently? Do you also take B12 supplements?

I find it’s a balance between B12 and folic acid. Need to get B12 set first and then take up to 5 mg folic acid or what ever you can tolerate.

Also have you looked at any blood circulation issues to your limbs? What is your blood pressure?

Do you keep a logbook of food, meds and symptoms?

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.

I would like to self inject. But where to start.

What country are you in?

England.

facebook.com/groups/PAB12DS...

I highly recommend this Facebook group for all resources. They have members from most countries and they helped me every step when I first started SI.

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.

I will try again.

Make sure you answer the questions they have for you before you submit. 🙂

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.

Is your hypothyroidism properly treated?

This study found that subclinical hypothyroidism can be associated with increased intraocular pressure when thyroid treatment is inadequate.

ncbi.nlm.nih.gov/pubmed/922...

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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