Just found out I have a b12 deficiency - struggling

[p101]

Have been feeling down and generally unwell for months (maybe years). Then started getting pins and needles in my feet every morning since end of August (which I still have) Progressed to a loss of sensation in my right thigh which then changed to a burning\nipping skin type pain - which I still have. Migraines being getting worst - started to get weird tingling up my neck into my head, cheek goes numb, loss of balance (almost like the grounds moving) . I've fallen over a few times, often get light headed, feel close to passing out. My arms get painful, heavy and often feels like I'm getting cramp in them from my hand right into my shoulder. They go weak ( but do not lose strength in grip - its more like they get very clumsy) I have severe stomach cramps at times and reflux. My gp doesn't think this is all caused by vitamin b12 deficiency?? And I see a neurologist at the start of March. I feel like I'm going mad - I've no energy to do anything. I'm struggling to look after my children when my husbands offshore. I've been off work for 5weeks now. I just want my life back. Have had 2 of my initial 6 injections. My count was 183 which my dkc said wasn't very low - can all these symptoms really be down to b12 deficiency?? Help please

[Hidden]

Hi p101,

Firstly welcome here! Am sorry you are in this PA boat, and yes your symptoms read very like PA symptoms. But fear not; well treated you should feel a lot better!

It just can take time to notice the benefit of the B12 injections, it's also different per person, some feel a lot better soon after the first jab, for others it may take weeks or months, but you will feel a lot better. It took me some 3-4 months to notice any improvements, I went back to GP initially saying you've got this wrong its doing nothing. But after 4 months I really started to notice the improvements, far more energy no heavy legs and as if I was far more awake. I thought I had mad cow's. Yes I remember the tingling on back of scalp, weird things feeling on calves of leg, all gone now though. You do need the right treatment though and other issues such as possible folate def and or iron should also be addressed and looked out for. Taking a simple multi vitamin can help.

Its good you are seeing a neurologist as your symptoms imply neurological involvement and you then should get far more intensive B12 treatment than without neurological involvement, see:

patient.co.uk/doctor/pernic...

"Management[2]

•For patients with neurological involvement, referral to a haematologist is recommended. Initial treatment is with hydroxocobalamin 1 mg on alternate days until there is no further improvement, after which 1 mg should be given every two months for life.[2] "

The serum B12 test is not a very clear test of how deficient you are , so levels are only an indication, see the above link:

"It should be remembered that serum B12 is not always an accurate reflection of deficiency at a cellular level."

If you want to read up more this is the latest guidance, it will explain in more detail what is mentioned above, see:

Guidelines for the diagnosis and treatment of Cobalamin and Folate disorders

bcshguidelines.com/document...

Look after your self now, it's taken years to become B12 def, it can take time for your body to undo the damage done by a prolonged B12 def. Some symptoms may not go completely, but a lot will. It takes 3-4 months for all the faulty blood cells produced with out enough B12 to be replaced by new healthy ones.

Sleep lots, eat well and be patient, give your body time to heal; I know, not easy with two children to look after...

Kind regards,

Marre.

[p101 in reply to Hidden]

Thanks. Pain/cramping in my arm so intense just now got appointment to see out of hours later hopefully for an injection of diclofenac (to avoid irritating my stomach any further). I have also been prescribed folic acid which I am taking daily. I was told I had a slight b12 deficiency years ago - like over a decade, when I was in my early 20s maybe even younger. But I was never given any info or treatment and other than feeling tired and being treated for migraines nothing was done! I didn't realise until now how bad it can get! Or even what it was for! So there is probably at least a decade worth to repair! x

[Hidden in reply to p101]

Recovery will take time..I hope you will feel some benefit soon. But when you do you will know B12 jabs are so worth it! And depend on them to keep you well. Hopefully you will get the right treatment for you, once you have seen the neurologist, not long now. But yes its a dismal time for you now, and hard on your family, but hopefully not for too long!

[Secondchance]

Your level was about the same mine was so I would say your symptoms could very well be due to low B12. I had a lot of neurological symptoms but had a major battle with GP to get treatment even though below reference Range, family history etc. Show your doc the guidelines and ensure you get treatment every other day until no further improvement. I got this for about 8 weeks and made major improvements. I started to just feel more awake within a couple of injections. Unfortunately not all GPs or neurologists are familiar with effect of even classical B12 deficiency symptoms (other than anaemia). Good luck for your appointment.

[Polaris]

Your test results are very low, and you are now most definitely having neurological symptoms, especially as you were diagnosed years ago. Here are extracts from the book, "Could it be B12? :

"we believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

There are also recommendations in BCSH and NICE guidelines, which many GPs are ignoring or not aware of !

Doctors are generally not up to date with the latest research guidelines on diagnosis and treatment for B12 deficiency and you have to be prepared to research and fight your corner or supplement and self treat as neurological symptoms can be irreversible if not treated adequately. These are some helpful sites:

b12d.org/b12-signs-symp...

bcshguidelines.com/docu...

b12d.org/b12-signs-symptoms...

It might be worth just pointing out to your GP the summary points of the latest research document Cmim BMJ- A.A. Hunt B12 :

Cmim/BMJ document. " Summary:

* Vitamin B12 deficiency is a common but serious condition

* Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.

* There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance."

* There is evidence that new techniques, such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.

* If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.

Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features and risk of cardiomyopathy.

It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given without delay."

Knowledge is power

Very best wishes P101

[Polaris]

Ps. Have you tried avoiding gluten? I found it helped stomach symptoms and wish I'd tried it years ago.

[Secondchance]

So have I even though antibodies came back negative for anti-gliadin. Feel so much better.

[p101]

Thanks for all the info. Having a bad afternoon so not read through it all properly yet - but I will. Got 3rd injection at 1pm today. About 2hrs in I was/am feeling horrendous. Weak episodes in my arm again, feeling faint like my blood pressure suddenly drops?? Some pain up the back of my head. Parents have just took my kids to there's for tea. Not coping at managing all these random symptoms at all .And they just seem to be totally random!? Like last night woke up during the night with loss of feeling in my left leg (thigh around into groin area) but it's come back throughout the morning) and weird vision which also got better. Totally house bound until I can get control of all/most these symptoms. Does anyone else wake up everyday without fail with pins and needles in their feet? I think what else I find hard is that I mostly look as though I'm fine - so family don't realise how debilitated I feel.

[Martha123]

Hi P101

Sorry to hear that you are feeling so unwell. I also have PA and it has taken time for the injections to work. If you can, ask for your folate levels to be checked out as you may have a deficiency there as well.

Take care, Martha

[p101 in reply to Martha123]

Thanks Martha,

I'm taking a folic acid tablet daily (for almost 2 weeks now) not sure if it's low but got given them as well. If it is how long do they take to work? I'm convinced it has something to do with my stomach as I am getting bad reflux and stomach cramps and seems to go hand in hand that if my stomach feels bad I have more/worst episodes. I have no appetite but am eating cause I know I need to! But always feel worst afterwards. I've had H pilori (not sure of spelling) infection before and have come off omeperazole and onto ranitidine instead so they can test for it again. The omeperazole had stopped helping anyway. Hopefully by injection 6 I'll see some significant improvement. Would I get this under tongue supplement I've seen people talking about from a health shop? I'm reluctant to order medicines etc online. X

[Hidden in reply to p101]

Hi P01,

If you were given folic acid tabs then you most probably were deficient in folate as well. It may be good for you to see a gastro to find out why you are having problems, with stomach acid and absorbing vitamins.

It will take some time but in time hopefully you will be a different person, full of renewed energy and much better eye site and strength again. Hang on in there, give your self time, it is hard, but have faith!

Kind regards,

Marre.