Diagnosed with b12 deficiency 80pg/ml how long will it take to feel better?

[Anayak27]

Diagnosed with b12 deficiency 80pg/ml how long will it take to feel better? The doc has given me optineuron injections for 4 weeks. I have Vitamin d3 at 8ng/ml. Thyroid at 6.23. I don’t feel much difference after 2 injections...

[Anayak27]

Thanks for your response. The doc has given 250mc injections once a week. I think 4 days after injection I am low again. I may have to consult another doctor. Or take It every four days.

[Anayak27 in reply to Anayak27]

Thanks much!!!

[Anayak27]

Also, which specialist to consult for this? I went to a gynaecologist with my reports. I have 90% symptoms of b12 deficiency

[clivealive Forum Support]

Hi Anayak27

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having injected starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

If you can get to see a doctor please also ask him/her to check your Folate level as this and B12 help your iron to make red blood cells and to function properly.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

[Rmilla1 in reply to clivealive]

Hi Clivealive,

I'm so glad you continue to respond to people here. I find your input very comforting since you have dealt with this so long and seem to have it under control and doing well. It's uplifting. I was diagnosed with Graves' disease back in 2003 and PA came shortly after. Sometimes the symptoms are confusing and not sure which one is causing the symptoms. I take an injection every month, but recently seem to need more frequent injections due to symptoms at like 400/500 level? But having said that, I have tried new treatment for my thyroid (had thyroidectomy 2008)and have been on a rollercoaster of up and down thyroid levels. Maybe affected my b12 levels? Or maybe I do better at a 800 or more level? Having the hand and feet tingling and thigh weakness and some hip bursitis? Ugh. Hopefully this will improve with the higher levels.

[clivealive Forum Support in reply to Rmilla1]

Thanks Rmilla1

I used to think I was the only person in the world with this "mysterious" P.A. as I never knew anyone else with it - and still don't personally - only vicariously through having joined the Pernicious Anaemia Society 7 years ago and then this community.

I too had injections every four weeks for over forty years and used to "slip in" the occasional three week appointment (because of the return of some symptoms in the run up to the next one) but my nurse "caught me out" and reported me to my "one size fits all" doctor who initially refused to vary the frequency.

However, joining PASoc and learning all I could about the disease and finding that I was "not alone" helped me to persuade my doctor to increase the frequency to now every three weeks.

I hope you manage to sort out your thyroid problems which may well affect your B12 levels. Don't forget to keep an eye on your Folate.

I wish you well

[KimberinUS]

Hi there,

250 mcg injections weekly seems low. Why are they not giving you 1000 mcg inje tions every other day?

Also your vitD is extremely low. Are they prescribing suppliment for that? You need to take magnesium, vit a and k with vit D.

[Gambit62 Administrator]

Anayak, what is happening with your thyroid - if the test referred to is TSH then (depending on what the units and range are but from the normal ones) you are hypothyroid and if you are being treated eg with levo - you would appear to be significantly undermedicated - though TSH is only a very small part of the picture with thyroid

Suggest you post on TUK forum (results with ranges and units)

healthunlocked.com/thyroiduk

symptoms of hypothyroidism and B12 deficiency overlap considerably ... and it is quite common to be affected by both PA and hashimotos (autoimmune hypothyroidism)