How long does it take to see an impro... - Pernicious Anaemi...

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How long does it take to see an improvement

Jadeo0909
Jadeo0909
17 Replies

Hello

My name is Jade

I started hydroxocobalamin on the NHS 18 months ago 1 monthly for few months and was then only getting them every 2-3 months.

As this wasn't helping and my neurological symptoms got worse I started having them at home after getting them from b12d charity and Intravita

I have been having B12 Methylcobalamin injections for 10weeks

For 8 weeks I was having them weekly and for the last 2 weeks I've been having them every 4 days.

I have not seen any improvement in my symptoms is this normal?

I have been taking a multivitamin too so my other vitamin levels shouldn't be too low.

I tested positive for intrinsic factor antibodies so I believe that means I have pernicious anemia

Thanks for any advice

17 Replies
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clivealive
clivealiveForum Support

Hi Jadeo0909 are you in the U.K?

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 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

and bid you goodnight

Reply
Jadeo0909

Hello thanks very much for your reply CliveAlice

I do live in the UK

I have had my folate levels checked 18 months ago before I started the treatment. And they where normal. Do I need to keep having them checked?

Thanks again

Goodnight

Jade

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clivealive
clivealiveForum Support
in reply to Jadeo0909

Probably best to have it checked again. Is your P.A. still being treated by the NHS?

Folate

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance. Folic acid is also being "fortified into" many breakfast cereals.

Folic acid is crucial for proper brain functioning and plays an important role in mental and emotional health. It helps in the production of DNA and RNA, the body's genetic material, especially when cells and tissues are growing rapidly, such as during infancy, adolescence, and pregnancy. Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body. Vitamin B9 works with vitamins B6 and B12 and other nutrients in controlling the blood levels of the amino acid homocysteine.

Rich sources of folate include spinach, dark leafy greens, asparagus, turnip, beets, and mustard greens, Brussels sprouts,soybeans, beef liver, brewer's yeast, root vegetables, whole grains, wheat germ, bulgur wheat, kidney beans, white beans, salmon, orange juice, avocado, and milk."

Vitamin B9 (Folic acid) University of Maryland Medical Centre

Reply
Jadeo0909

Hi

I have blood prick test samples done privately as I have a phobia of needles and blood and the NHS won't offer this.

I have been taking folate 400ug which I believe is 200% daily in a multivitamin and 12 mg of iron.

Thanks for the info and your time

Jade

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Gambit62
Gambit62Administrator

It may also be that methyl isn't the best form of b12 for you - it doesn't work for everyone.

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Jadeo0909
Jadeo0909
in reply to Gambit62

Hello Gambit62

Thank you for your advice and your time.

I have had Hydroxocobalamin injections too. I had 10 altogether and never felt any improvement short or long term even in my levels of tiredness.

Is there any other form availabile?

Jade

Reply
Gambit62
Gambit62Administrator
in reply to Jadeo0909

I didn't notice any difference from B12 shots (hydroxo) until my 3rd maintenance shot. You could try getting some adenosyl sublinguals to supplement with the methyl and see what that does - there are a few recorded instances of people who have problems converting methyl to adenosyl and both forms are needed to run different processes in your cells.

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Jadeo0909
Jadeo0909
in reply to Gambit62

I was using adenosyl sublinguals when I started treatment with hydroxocobalamin and they didn't help. I can't absorb B12 through my stomach so maybe that's why.

I'll see what other B12 Intravita sell I'm sure they do three kinds.

Thanks you for your recommendations.

Reply
Jadeo0909
Jadeo0909
in reply to Gambit62

I have seen Intravita supply adenosyl B12 but not cyanocobalamin.

I may try that next time will cost £80 including delivery though for 10 ampoules so won't be able to buy it just yet.

Reply
clivealive
clivealiveForum Support
in reply to Jadeo0909

Nit sure whether this is useful but I've been on cyanocobamalin for 46 years and didn't "get on" with hydrox

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Jadeo0909

If you don't mind me asking, where do you purchase cyanocobalamin injections?

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Gambit62
Gambit62Administrator
in reply to Jadeo0909

Jade - absorption problems affect absorption in the ileum. There is still a bit of absorption outside the ileum -generally about 1% - which is why sublinguals tend to be 1000mcg+ - they can help with maintaining levels but they are unlikely to be effective at reversing a deficiency which my be why they didn't do anything for you before you started treatment. You might find that starting sublinguals just after a maintenance dose works better.

If you haven't tried more frequent injections with hydroxo then it may also be worth trying that.

You can get cyano and hydroxo from german on-line pharmacies.

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clivealive
clivealiveForum Support
in reply to Jadeo0909

I'm fortunate to still get my cyano on prescription here in the UK but I had to "fight" for it. It is, I believe, still widely used in the States and as Gambit62 says can be bought from Germany .

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ChitN

Hi Jade, I was on 3x weekly methyl for 2 months and noticed very minor changes. I then switched to hydroxo and noticed changes more quickly but I find I need to have injections every day or every other day. Gambit62 is correct regarding supplementing with adenosyl if on methyl, I wasn’t aware of this until I read about it recently. Ive also heard of people responding better to cyano.

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Jadeo0909
Jadeo0909
in reply to ChitN

Dr Chandy (b12d) suggests methylcobalmin is the most effective for nerve damage, which is what I'm suffering with. But I could try a mixture of the different forms to see if that gives any improvement.

Thank you for the advice

Jade

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Jadeo0909
Jadeo0909
in reply to ChitN

Thanks for the advice about daily injections, maybe that is the problem I'm only having them 2 x a week.

Reply
ChitN
ChitN
in reply to Jadeo0909

Everyone is different. But if things are not improving, it may be good to check back in with your doctor to ensure nothing else is going on.

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