B12 and neuropathy

[Auntyp62]

In 2016 I was given b12 injections every 3 months due to low b12 and trigeminal neuralgia, I was not tested for PA. after 2 years I changes to sublinguals as I did not like the way I only felt good for a while and my doctor would not give me them more frequent. The sublinguals worked and I have kept my B12 high in the range, I also supplement folate. Earlier this year I was diagnosed with Tarsel tunnel in one ankle, 2 months later in both ankles and now my wrists are starting to do the same. After 6 months of telephone appointments and several different doctors I am now having blood tests etc. My question is, can the b12 be causing this peripheral neuropathy if my b12 in blood results are still high? Should he be looking for something g else?

[Gambit62 Administrator]

Its more likely that the high dose oral isn't enough - have you tried upping the dosage to see if that has any effect?The symmetry to your symptoms is consistent with B12 deficiency but there are many other causes of peripheral neuropathy - though what you are describing isn't quite peripheral neuropathy as I understand it.

Possible that the tests may include looking at thyroid function - and if you have PA there is a real possibility that you have also developed an autoimmune thyroid condition.

Hope you get to the bottom of it.

I developed tarsel and carpel tunnel long before I was diagnosed with B12 deficiency - B12 has certainly helped with both but so has being very aware of posture.

[Auntyp62 in reply to Gambit62]

Many thanks for your reply. I have been idiopathic hypothyroid for 47 years but maintain healthy t4 and t3 levels by doing private blood tests. I am just concerned that the telephone appointments had missed something and the latest doctor is concentrating on b12 but I suppose it the start of investigation and at least this doctor has taken notice. As you say it certainly helps when posture is improved. I threw away all my shoes and started again with orthopaedic supports etc in them and it has helped the ankles when walking but still keeping me awake at night, I am just a bit curious that it has now started in my wrists.

[Gambit62 Administrator in reply to Auntyp62]

I think B12 neuropathy normally starts in the hands.With carpal B12 won't be the only thing that is going on and the links aren't that well established. Both Carpal and tarsal tunnel are due to constriction of nerves passing through corridors of bone and cartilage. There are a number of things that can aggravate them - muscle weakness in the feet, swelling from water retention seem to be factors that have been involved for me. Degradation of the myelin sheath around nerves could also be a contributing factor making your more susceptible.

Idiopathic hypothyroidism means that the cause isn't known - may be worth trying to get an antibody test done to see if these are now present and it is really hashimotos.

Basically there are a number of things that could be going on and it probably is down to a number of things going on.

[Auntyp62 in reply to Gambit62]

Antibodies are non existent and no swelling in ankles. I am basicly very fit and not overweight I walk about 10 miles a week but only with orthotics holding my arches very high. It’s a conundrum isn’t it

[Sleepybunny]

Hi,

"The sublinguals worked and I have kept my B12 high in the range,"

Have the sublinguals stopped the B12 deficiency symptoms from coming back?

Link about Peripheral Neuropathy

nhs.uk/conditions/periphera...

NICE CKS link about Carpal Tunnel Syndrome

cks.nice.org.uk/topics/carp...

[EiCa]

I am still relatively new to this, so maybe I am not right but from reading here, testing B12 while supplementing doesn't tell the right story. I have been looking at my methylmalonic acid and homecysteine levels ( which were dangerously high) to see if the B12 is making it into the cells and not just hanging out in my blood stream.

[Auntyp62 in reply to EiCa]

Can I ask were they high while supplementing.

[EiCa]

I found out I had high methylmalonic acid and homocysteine right after my B12 deficiency was diagnosed. I had not been supplementing. My serum B12 was 112 and my MMA and homeocysteine were four times the high range. I have not retested purposely as I am injecting and have been for several months. However, a doctor included MMA in a recent batch of tests he ordered and my MMA was almost zero! Seemed too good to be true and or confirmation that I have a functional deficiency...several years ago my serum B12 was sky high (and no doctor seemed to care or give it any attention) and I was almost as sick as I am now, but no one tested MMA and homecysteine. It was evident that the B12 was not making it into my cells and that high B12 I had some years back was a red flag for a deficiency.