B12 and folate

[Aimee1314]

New to forum come from thyroid UK one what do I do about results please thanks

folate 1.8 (2.5 - 19.5)

vitamin B12 177 (180 - 900)

[clivealive Forum Support]

Hi Aimee1314 you say you had a "good appointment" with your doctor did he agree any treatment regime for your B12 and Folate deficiencies in addition to your thyroid and Vitamin D problems?

[Aimee1314 in reply to clivealive]

Thanks he has tested me for intrinsic factor antibodies then loading dose of B12 injections. He has given me loading dose of vitamin D and has told me not to start folic acid until intrinsic factor comes back. He has also started me on 50mcg levothyroxine with a retest in 6-8 weeks

[clivealive Forum Support in reply to Aimee1314]

Your doctor seems to have got you pretty well "sussed out" Aimee1314 and hopefully you will start to feel a bit better soon.

Did the tests show that you do actually have Intrinsic Factor Antibodies or is the diagnosis a Vitamin B12 Deficiency?

How many B12 "loading doses" has he prescribed? They should be given on alternate days "until the is no further improvement" according to the N.I.C.E. Guidelines.

Be prepared that your neurological symptoms may take some time to improve and indeed some of them may appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system.

I cannot comment on your thyroid problems as I'm not a medically trained person but I have had P.A. (a form of B12 deficiency) for more than 45 years so I know how important it is to keep your B12, and Folate in balance.

[Aimee1314 in reply to clivealive]

No the diagnosis is vitamin B12 deficiency. But he is testing me for intrinsic factor antibodies anyway to see if they are negative or positive. He has prescribed loading doses to take once a week.

[Gambit62 Administrator in reply to Aimee1314]

note: IFA test is notoriously prone to false negatives - 40-60% of time depending on the test method - so a negative is a long way from proving that you don't have PA as the cause of the deficiency.

unless your deficiency is due to a treatable problem like h pylori, you will need to be on maintenance doses to keep your B12 levels topped up after your loading doses.

[Wens1114d]

Hya Aimee

Where did you get these results from?

Anything lower than 180 score on your B12 if you are in the uk you will have 6 B12 shots over 2 weeks then 1 every 3 mths for rest of your life.

Mine was 170 and I had my 2nd injection yesterday.

Goodluck

[clivealive Forum Support in reply to Wens1114d]

Was your Folate level checked at the same time Wens1114d ?

Folate and B12 help your iron to function properly in the body and to make red blood cells.

Let us know how you get on with the loading doses

[Wens1114d in reply to clivealive]

Hi

Yes my Folate was tested same time as B12.

Im so week, out of breath and just want to cry. Im in bed now 6.32pm rely struggling at the mo.

[clivealive Forum Support in reply to Wens1114d]

Sorry you're not doing so well at the moment.

If your Folate level was low you may well need to supplement with folic acid.

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.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

You can buy folic acid cheaply over the counter at your local pharmacy or supermarket - have a word with the pharmacist. Or you can increase your Folate intake by eating more leafy green vegetable, sprouts, broccoli, spinach, peas, beans etc.

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.

I really do hope you start to feel better soon and wish you well.