on b12 treatment, when start folic acid?

[Kat_88]

Hi all, I was able to feel better over the last year with the help of this forum, a big thank you. My problem started with neurological symptoms without knowing what was happening! Then with the help of people here and researching I found out I was low in b12 when started treating with folic acid (5mg 7 days a month) and it took a few months for symptoms to show up. My GP and also hematologist did not accept it at all. I stopped folic and started SI. I was doing so well that reduced SI to once a month until I started folic acid recommended by same hematologist and symptoms started back. I had to stop it again and started EoD SI. Dr also said there is no autoimmune disorder and acted as if it was all in my mind!!! Any similar experience? When should I take folic acid again as I am a thalasemia minor? I fear looking at folic let alone taking it.

[Nackapan]

Get your folate levels checked. That high dose is only if you are deficient.

A maintenence dose is 200-400mcg a day of folic acid usually if needed .

Often in a multivit .

[Kat_88 in reply to Nackapan]

Thanks for your reply. In the last two checks within last year I was not deficient even when I stopped taking folic acid. I am thinking of taking this daily amount as in multivitamins and space out b12 gradually again.

[Narwhal10 in reply to Kat_88]

Hi Kat_88,

You have thalassaemia minor where if I am correct you have mild to moderate symptoms. Do you require transfusions and iron chelation at all ? Now this bit stuck out for me,

I was doing so well that reduced SI to once a month.

None of us like SI and Hydroxycobalamin/cyanocobalamin is to keep symptoms at bay. Our bodies dictate our treatment regime, not a clock, nor a date on a calendar nor every 2 weeks. Give your body what it needs, treat it with respect.

Many of us have experienced the approach by doctors of It is ‘All in our minds.’ It is actually factually correct because our minds interprets the pain, numbness, pins and needles in our bodies. Plus, it is our minds that help us verbalise in English, Italian, Spanish what is wrong with us.

Great about a multivitamin.

[Kat_88 in reply to Narwhal10]

Thanks for your reply. Well, no transfusion no iron deficiency, it's a Mediterranean genetic which I can live with normally but keep it under control idk why all of a sudden dr prescribed me high doses even if I had no intention of pregnancy at the time and no deffiency (but having history of low b12) Anyways it happened and as you mentioned we have to take control and listen to our bodies, I do agree with mind-body relation and i expereineced it alot but in this particular case I was so in pain and dr telling me that made me so angry

[Narwhal10 in reply to Kat_88]

Thanks Kat_88,

Several of us on here are nurses or retired so I knew about thalassotherapy. Obviously, you live with it and I am not a haematologist.

Unfortunately, as women, our pain, our illnesses are taken less seriously. We are too ‘emotional’, ‘hormonal,’ or ‘anxious’. Sorry the doctor angered you. Hope in time you can laugh at them. It is really not worth it.

I was very controlled in not knocking out one person (doctor). That is all they are to me. He had no idea that I am trained in Mixed Martial Arts. I watched him, he could not even be bothered to go and help with a cardiac arrest (heart attack). Said it all for me.

We could ALL write a book on the ridiculous nonsense that we have heard.

Focus on you. 😘

[Technoid]

Don't take high dose folic acid if you are not folate deficient.

[Kat_88 in reply to Technoid]

Thanks for your reply.

[Michelle___justme]

I was folate deficient and had to take folic acid every day for 6 months it’s a vitamin your body doesn’t make stores of however my b12 was low but just not low enough to treat even though I was extremely exhausted heart palpitations dizziness the folic acid worked for me as for the b12 I bought a mouth spray and combined I was a lot better. I can’t say taking folic acid more than expected should cause any bad symptoms at all as the body would just pee it out.

[Mixteca]

You could try methlyfolate 400mcg as an alternative. It's bioavailable and absorbs well. I was low and doubled that dose until my levels rose and I continue with 400mcg daily as maintenance.

[Kat_88 in reply to Mixteca]

Thank you