Hi. I had a thyroidectomy when I was young. I have osteoporosis. I started eating vegan 4 months ago. I noticed I was having progressing tingling up to my knees. My hands and feet numb in air-conditioned stores. My forehead is numb. Vitiligo progressing on lower arms. I thought b12 deficiency. My homocysteine was 11.5 and ferritin was 31. Makes sense right?
Well I found the fb group and started taking methylcobalamin shots. I've had 7 in the period of about 2 weeks. I got real unwell taking the folate that was recommended. I got labs redone. Here they are:
I have an appt with my provider tomorrow and I want to know exactly what i am asking for. I feel like b 12 is my problem but how can I reconcile that with low homocysteine on this lab? Does supplementation which I started drive it down quickly? She didn't run MMA as I asked. And if I am so anemic why does iron look ok except ferritin?
I am a nurse and I have asked drs I work with but nobody understands this it seems--including me. I would be very grateful for any insight you have. This neuropathy is troubling.
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There are dozens of possible causes of neuropathy, B12 is just one. I can't see much evidence for a B12 deficiency in what you have told us. Have you seen a neurologist?
What was your serum B12 before you started the injections?
I was told by my N.P. that she suspected I was and since I thought it logical (my n.p. did too) that I had a b12 deficiency, that anemia would go hand in hand. I did not do serum b12 because i had taken some oral supplements --not knowing it would affect a lab. Prior to eating vegan I had very low meat intake for a long time. My N.P. had said after running some kind of panel on me that it showed I was deplete of B vitamins and needed to supplement--that I also was not digesting fats well. I had tingling in my feet prior to going vegan but after going vegan it is now to my knees. The homocysteine is what confuses me--it was high and the ferritin was on the low end. (now its a little better). I know a vegan diet can make that correction and also the fb group said that it could have been affected by the 6 every-other-day injections I have done. I am so confused. Of course my mind goes direct to MS after seeing these labs but many on fb group still think injections are what i need. I appreciate you commenting, thankyou.
It all looks fine to me. I suggest that you start eating a healthy, balanced diet with meat, fish and dairy products in it as being vegan obviously isn't agreeing with you.
You only live once so don't do something inherently unhealthy for the sake of it and suffer as a consequence - its just not worth it! x
4 months of being vegan on its own isn't likely to lead to a B12 deficiency unless your diet was poor in terms of meat/fish/dairy/egg for a long period before that - on average the fact that there are good stores in the liver means it takes years for a dietary deficiency to take hold.
It isn't uncommon for patients to respond badly to methyl B12 or methyl focused folates.
Suggest you ask for a referral to a neurologist.
The fact that your nambness seems to be a response to cooler temperatures might suggest a circulatory problem.
As you say you started on injections already MMA isn't likely to be useful at the moment and your homocysteine seems to be well in range. The injections would have more than corrected any dietary deficiency.
I appreciate your reply. Prior to eating vegan I had very low meat intake for a long time. My N.P. had said after running some kind of panel on me that it showed I was deplete of B vitamins and needed to supplement--that I also was not digesting fats well. I had tingling in my feet prior to going vegan but after going vegan it is now to my knees. The homocysteine is what confuses me--I know a vegan diet can make that correction and also the fb group said that it could have been affected by the 6 every-other-day injections I have done. I am so confused. I appreciate you commenting, thankyou.
having problems processing lipids can also be a consequence of B12 deficiency.
B vitamins covers a huge range - B12 and B9 are the two commonly associated with absorption problems caused by issues in the ileum - PA being the most common.
homocysteine can be raised due to either B12 or B9 deficiency. B12 is only found in animal products - B9 is found in green leafy vegetables, so correcting deficiencies in either could have resulted in the lowering - though your earlier result also appeared to be in range .
So after taking 7 injections of methylcobalamin do I take an MMA or an antibody test or are all tests useless at this point? In my mind it seems best to insist on injections and see if it helps and if it doesn't then go for more mri's and such. Tell me if I'm being irrational. I eat very healthy. Lots of greens and other vegetables/beans. My preference is natural medicine -- I don't want to do an MRI with contrast if I don't have to.
you have already been told that the problem was an absorption problem and not dietary - both B12 and B9 (folate) deficiencies would point to that anyway. The most likely absorption problem is Pernicious Anaemia - if you want to know for sure if it is pernicious anaemia you can try for IFAB test but it's not very sensitive so a negative wouldn't rule out PA as the cause - so may be easier to rule out other causes such as h Pylori infection than actually prove it is PA.
The injections don't need to be methyl - cyano (unless family history of Lebers - a rare genetic condition) should be as good - assuming you are in US - or hydroxo if you are in the UK.
If the injections have resulted in improvement in neurological symptoms then continue with them until the symptoms stop improving and then go on to maintenance (if you can keep a diary to decide on how frequently you need maintenance doses) and if you can persuade your doctor to go by that rather than apply what is basically a random average. If the symptoms haven't shown any improvement at all then I'd suggest going for the neurologist option to see if there is something else going on as well.
You said you have osteoporosis. Was your vitamin D tested recently ? When was your last Dexascan done?
You said you had a thyroidectomy when young. Are you on Thyroid UK site ?
You also said that you went on fb site and got really unwell on the folate that was recommended - you are not alone there I think. Are/were you taking more than 200-400ug daily ? Your results for this are now above range. You might well not have needed supplements.
You haven't given any serum B12 test results. Did you not get this tested ?
Like fbirder said, you may be looking in the wrong place for reasons for your neuropathy. I can see why you might be thinking B12 deficiency, but you are a nurse and don't need to guess at this. Get confirmation.
If you have decided to go vegan, you do need to also take daily supplements for B12. Tablets or a spray will be effective- unless you have a problem with absorption/PA. Why inject if you don't have to (even if you are good at it) ?
I hope you find some answers soon - get the doctors to be of more help. They are your work colleagues, and would be lost without you if you went off sick !
Thank you for commenting I feel so confused. you are right about the folate. My last thyroid panel came back high and she is going to change my meds. But over the years i have been all over the spectrum with that and I have never experienced these symptoms being in hypo state. In my experience I have had great difficulty getting answers from western doctors. As you know they often don't understand b12 deficiency and that's just where I started since I knew I was depleted in b vitamins and had poor absorption (according to my n.p.)and these symptoms came on strong 3-4 months after going vegan. The next thing my mind goes to is MS (cry)and so that is why I am trying to confirm or rule this out. Thankyou.
I don't think anyone here can help with the ruling in/out for you.
I'm not a medical professional (I'm not even sure what an n.p. is !) and you do need medical help to determine the cause of your problems. B12 deficiency can be a devastating condition when not treated or not treated well - and because of the wide range of symptoms, can be misdiagnosed as something else - including MS. You are right in saying that Western doctors generally do not understand B12 deficiency well and so can rely too heavily on tests that are unreliable or discredited. Having said that, I didn't even know there was such a thing as B12 when I was first told that I had a deficiency in it (serum B12 test) and would need injections. Neither did I realise that these injections would be for life.
Have you had a look at the Pernicious Anaemia Society website ? They have some very useful information for people with PA/ B12 deficiency, also for GPs and medical practitioners - and have a comprehensive symptoms list that might help you, This society is involved with current PA research, and helping with the update of medical guidelines for professionals, among other things. Worth a look.
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