Terrified of my low vit B12. Please help

[Sasical]

Hello everyone

I have been having quite a few strange symptoms for a long time but because I have an anxiety disorder doctors always put all mys symptoms down to anxiety.

Recently I'm being tested for a few things and my vit B12 was 155 pg/mL (180-914). I have seen 2 doctors about this (my reading just 1 year ago was 360). One said to just eat more food with vit B12, the other has given me a very light supplement.

The problem is that I have started reading about this on the internet and I'm now terrified that I will drop dead any minute or that each minute that passes I'm causing myself irreversible neurological damage.

I would appreciate any help as I'm really in a state of utter panic.

Thank you in advance x

[Funkyfaerie]

I've been have 3 monthly injections since 2012. My body doesn't proceeds B12, it runs in my family, I'm fine now.

It could well be giving you symptoms, just see how you feel on the tablets, and if no better ask for an Intrinsic factor antibody blood test, it will tell you if your body is processing the B12.

Try not to freak out.... ❤️

[Sasical in reply to Funkyfaerie]

Thanks!! So I few days won't make any difference? I've got an appointment with the neuro doc on Tuesday.

I just don't understand why they can have dropped so much in just under a year!

It's a bank holiday here is Spain so can't do anything before I see my neuro

[Funkyfaerie in reply to Sasical]

I wouldn't worry about a few more days at all!!

[Sasical in reply to Funkyfaerie]

Thanks so much foe getting back to me

[Funkyfaerie in reply to Sasical]

You're very welcome!

[fbirder]

What is your diet like? If you're vegetarian or vegan then eating more foods with B12, or taking oral supplements might work. If you eat plenty of meat/fish then your diet isn't a problem and they are likely to do nothing.

If you are in the UK demand to be treated as per the recommendations in the British National Formulary - BNF. That is injections for life.

[Sasical in reply to fbirder]

No, I'm not vegetarian/vegan, in fact I I haven't changed my diet at all. I'm not in the UK but I have an appointment with a neurologist on Tuesday, see what she has to say about it.

I'm afraid that by leaving it for more days there might be irreversible damage

[fbirder in reply to Sasical]

The nerve damage from a B12 deficiency takes quite a while, so a few days isn't going to make a huge difference. Make sure you don't take any folic acid or folate supplements until they've started the B12 treatment.

[Sasical in reply to fbirder]

Oooh??? I am doing because that is what my doctor has given me. 400mcg of folic acid + 2mcg of cianocobalamine.

Should I stop it?

[fbirder in reply to Sasical]

I would.

Folic acid, in the presence of an untreated B12 deficiency can be harmful. 400 mcg isn't too much, so don't worry about it.

[Sasical in reply to fbirder]

Ok, I will stop taking it until I can bring this subject up with the neurologist.

I have a box of of B1-B6-B12 left over from when I had neuropathy and this is what I was prescribed. I took it for about a year to 18 months but then my B6 was high and they told me to stop takin it.

Maybe it will be ok to take that one?

[Martin_12 in reply to Sasical]

If your B1-B6-B12 is Neurobion I would think carefully before taking it. I think there are various forms of neurobion but one I have seen has 200 mg of B6 which is too much.

Also, any substantial quantity of B12 you take may increase your B12 test result which may make your neurologist reluctant to give you B12 by injection. 2 mcg of B12 is unlikely to do anything if your B12 level was 155 on a non-vegetarian diet.

See b12-institute.nl/caution-no...

[Sasical in reply to Martin_12]

That's very interesting about B6 because after I took Hydroxil (that is the vit B supplements the always hand out in Spain for neuropathy) for 12-18 months my bloods came back with high levels of B6. So when you mentioned this I had a look at the box and it has:

B1- 250mg

B6- 250 mg

B12- 500 mcg

And it says on the box it can only be taken for 2 weeks!!!

And I was given this for over 12 months!!!

My bloods in nov 2018 were:

B12- 360 (187-883)

B6- 34,3 (8,7-27-2)

Now in nov 2019:

B12- 155 (180-914)

B6- 20,8 (8,7-27,2)

Ferritin 34 (10-120)

Vit D- 20.9 (30-100)

Since you seem to know a lot, if you ( or anybody else who knows) could help me know what to suggest to the neurologist for my appointment on Tuesday?? Or what other testing you feel I might need...I find all the information a bit overwhelming. The combinations of folate and B6 with b12 etc etc

I am very grateful dor any replies and support x

[Marz]

Anxiety is linked to low B12 ...

b12deficiency.info/

[Ajane]

Hello Sasical. I was deficient in B12, with horrible symptoms (including anxiety) for many years before I began treatment & my symptoms have pretty much disappeared after self injecting every other day for over a year now. It can be a minefield in the beginning to be taken seriously, get good advice & effective treatment, but you will

get there. The lovely people on this forum helped enormously.

Take care 😊

[Sasical in reply to Ajane]

So even your anxiety has improved?

[Ajane in reply to Sasical]

I had the typical depression & anxiety that is often a symptom of B12 deficiency & yes, it is one of the symptoms that has been resolved. It will be interesting to see how much better your anxiety becomes once you have been on the correct treatment for a while.

[Sasical in reply to Ajane]

Wow glad for you! That would be amazing as it is really limiting my life

[Sasical]

Thank you all so much!!

[MoKayD]

I had really bad anxiety for about a year before I started getting my B12 shots. Almost immediately after my first shot, a feeling of calm came over me. It was wonderful. I hadn't felt that peaceful for a long time. If I hadn't been diagnosed with B12 deficiency I would probably have gone on anti anxiety meds.

[Sasical in reply to MoKayD]

How interesting, I've been put on Mirtazapine and gabapentin for my anxiety because I can't take benzos. But I always say it feels as if my body is anxious but my head isn't, it feels like purely physical symptoms of anxiety.

I'm glad you found relief, I hope I will too, even though I must say I'm very apprehensive about taking anything at all after I had a severe reaction to Levofloxacine.

Thanks for replying, you're very kind x

[Budsa]

Hi Sasical,

You said that your doctor had prescribed 2mcg cianocobalamin and 400 mcg folic acid. I think you may have meant to type 2 mg of cianocobalamin (=2000 mcg).

Your folate appears to be already in the normal range so you should be OK using these b12 tablets. Ask the specialist about the folic acid tablets.

As your serum b12 responded OK previously to oral b12 (500 mcg) then it should respond even more so to 4 times as much. Hopefully your neurologist can find out the cause of your low4 b12 and treat it otherwise you will need to continue taking tablets for life.

[Sasical]

Just re-checked on the box and leaflet: 400 micrograms folic acid and 2 micrograms of cianocobalamin.

It seems like a joke, might as well not take anything.

[Martin_12 in reply to Sasical]

400 micrograms folic acid and 2 micrograms of B12 are typical of the RDA (Recommended Dietary Allowance) for those vitamins.

Neuropsychiatric symptoms (e.g. anxiety and many others) and low total serum B12 indicate that you are not absorbing B12 and should probably be treated with injected B12. The usual protocol is 1000 mcg hydroxocobalamin injected every 2nd day until symptoms stop improving, then 1000 mcg hydroxocobalamin injected every 2 months. Some people need jabs more frequently to keep symptoms at bay. If you are treated with injected cyanocobalamin you may need more frequent jabs (approximately twice as many).

Your blood tests indicate that you need a vitamin D3 supplement. A common maintenance dose of D3 is 1000 IU (international units) per day. Your doctor will probably recommend a higher dose initially (e.g. 5000 IU per day) to get you into the normal range.

Tests you could ask for include a full blood count to look for anaemia caused by B12 deficiency, intrinsic factor antibodies, homocysteine and methylmalonic acid (MMA). Intrinsic Factor is produced by the stomach to transport B12 from the small intestine into the blood. One cause of B12 deficiency (pernicious anaemia) is destruction of IF by IF antibodies. The IF antibody test is positive in only half of people who actually have the antibodies, so a negative test does not mean you don't have them. Homocysteine and MMA are chemicals produced in excess in cells that do not have enough B12, so high levels can indicate B12 deficiency.

[Sasical in reply to Martin_12]

Thank you so much Martin!

[Sasical]

Now I'm shaking and not sleeping I'm so anxious. The thing is that ever since I had a severe reaction to Levofloxacin over 4 years ago (that left me in bed for 7 months unable to walk or do anything) I'm terrified of taking anything. It took me over a year of acute anxiety all day everyday to build up the courage to take meds for my anxiety and depression. Now I realise these symptoms might be from low vit B12. But I'm terrified of the injections in case I have a reaction because I have read here on the forum of people who have them.

[MoKayD in reply to Sasical]

I was worried about a reaction too. I tend to react to things that don't bother anyone else. I started my shots because my research into B12 deficiency and the consequences of not treating it was so terrifying that the B12 shot seemed the lesser of the two evils. All I can say is, sometimes you have to just close your eyes and jump into whatever it is that is scaring you. Take someone you trust with you when you get your first shot. Just holding someone's hand is reassuring.

[Sasical in reply to MoKayD]

Thank you veey much! you're right. I seem to be at that point too where having read about B12 defficiency symptoms are so scary that I'll just have to go with it and what shall be, shall be.