Advice on Folic Acid.: I am having B1... - Pernicious Anaemi...

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Advice on Folic Acid.

I am having B12 injections every eight weeks now. I was diagnosed nearly three years ago but haven't taken any Folic Acid yet so I've bought a low price, Valupak, pack of 400ug tablets. I have no idea what ug means, neither do I know if this is a correct dose, how often to take them and are ordinary brand good enough to help me.

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3rdNettydoon

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wedgewood3 years ago

The strength you have chosen is 400milligrams , which is fine . That is the recommended dose for pregnancy , to

prevent Down’s syndrome in a foetus

It’s the dosage that most P.A patients take unless they are grossly deficient .

etreas3 years ago

400 ug is equal to 400 micrograms, which is the recommended amount for adult men and women. I believe wedgewood meant to say micrograms (ug) rather than milligrams (mg), but please note that 1mg = 1000 ug. So 400 mg would be 400,000 ug, or 1,000 times the recommended dose!

wedgewood• in reply toetreas3 years ago

Thank you so much for correcting that for me . It was the middle of the night when I wrote it ! ( but that’s no excuse !)

Michelle___justme3 years ago

Are you folate difiante I take 5mg a day as I am and need my folic acid tablet as my bowel can not absorb b9 what are your result if you are planning on taking it ?

Gambit62Administrator• in reply toMichelle___justme3 years ago

in general maintenance doses of over 1000mcg per day are not recommended as they can interfere with processes that use b12 stopping them from running or making them less efficient. 5000mcg is the correct dosage to treat a B9 deficiency used for a month or so.B12 absorption problems can also affect B9 absorption but the effect isn't as dramatic as the effect on B12 absorption.

3rdNettydoon• in reply toMichelle___justme3 years ago

It's a long time since it was tested. Maybe I should get a test then take it if my level is low. Thanks for this reminder.

Ritchie12683 years ago

As Gambit has commented the 400ug is micrograms and is the recommended daily maintenance dose for Folate deficiency.When first diagnosed I was prescribed 5mgs daily for one month, then told to buy 400ug to take daily.

I forgot to buy anymore when I ran out last year and after blood tests my levels dropped really low again. My GP prescribed me 5mgs per day for one month only again to bring my levels back up, then said to buy and take 400ug to maintain my levels, and not forget in future!

I don't believe the brand makes any difference.

Nackapan• in reply toRitchie12683 years ago

For 3rdNettydoon.;

My daughter has to keep up a maintenence dose of 400mcg daily of folic acid as otherwise her levels dramatically drop.I on the other hand dont need this as went over the top of the range .

So I take 200mcg in a multi vit . Last bloods say back 'in range '

Best to go by blood results.

The only problem her is getting folate levels checked automatically checks serum b12 too.

That is only a problem if the gps use this to stop b12 injections.

My b12 regime has been queried by a nurse again.

New managers now 'reviewing '

Shouldn't be like this but it is.

So make it clear at time if bloods on b12 Injections so levels will be high

Ritchie1268• in reply toNackapan3 years ago

The other Dr who I don't normally see was also concerned saying my B12 was >2000. She just couldn't get it when I said it would be as I'm having injections regularly. My usual GP knows I SI and is fine with it, but the other one and one nurse was really concerned. Strange how education around B12 varies in the same surgery.

Nackapan• in reply toRitchie12683 years ago

Yrs isn't it.'My g.p had prescribed 2 weekly b12.

I do some at home and have an IM ond 6 weekly ag the surgery.

Even though she is still there now the practice had bed taken over shf is salaried.

Less clout than the 6 new partners on a power struggle it seems

Nurses shouldn't really query what's prescribed.

She just didn't believe my 'regime

It's happened so many times j get weary hanging around for over an hour ( last time) while they decide

One of the doctors blocked my repeat prescription

Nonone told me why.

He gave it to 'my' gp who the write a paper one.

Noone told me as usually electronic now.

Pharmacist kept saying not there . Had go in person and the receptionist found the paper one

Turned out the other gp was not happy to do it???

Have you got a prescription? Or are they just aware you SI ?

Hoping you are as well as possible

Ritchie1268• in reply toNackapan3 years ago

I have a prescription and although my GP knows I SI, he said it's fine. I have to go to the surgery every 3 months and the nurse does it.Again, one nurse is all for me SI and the other dead against it.

It was the nurse who told my GP I should be getting every other day until symptoms ease. That was around 2 years ago.

I've eased off to once per week now and I'm stable on that frequency.

I'm all good thanks. Hope things have settled down for you health-wise now.

I've not been on here much as I've been busy setting up a service to educate, and work with GP surgeries to support patients who want to come off their painkiller medication. Opioids, Opiates, Benzodiazapenes, Gabapentinoids and Z-drugs. To raise awareness and to show GP's they can't just stop or taper someone's medication too quickly if they're dependent or become addicted.

I've got three surgeries I'm going to be working with and three others that have reached out for help.

On one presentation I've done I show how vitamin deficiencies can be one of the many side effects of over use, and prolonged use of Opioids.

So I'm also going to discuss with GP's about the issues many face regarding PA treatment, as with what happened to you when one GP suddenly stopped your prescription.

With Sajid Javid stating last week that the delays in surgeries etc due to Covid that the estimated people waiting is around six million, I'm going to be very busy as GP's have just kept prescribing as they don't know what else to do with patients in pain.

• in reply toRitchie12683 years ago

Ritchie1268,

I commend you on your work with treating people with addiction to different medications.

My partner had sciatica and prescribed four or five different pain medications including opioids.

Which made him worse, knowing he had low B12 and many of the symptoms I argued with a doctor on getting a b12 injection ... which she agreed to as she said "it would do him no harm".

He slept for nearly three days (he had insomnia)

and since I have injected him four more times.

He has'nt needed pain relief since the 1st injection

And is recovering quite well considering it's only been a couple of months.

My brother was on nerve pain medication, had pain relief injected into his back etc.

Was found to be b12 deficient given loading doses

(5 in Gloucestershire), three months later retested and had to have another 5 b12 injections.

He has not had to have sleeping tablets or nerve pain medication since.

Just the two of them having b12 injections have saved the NHS around 10 different medications.

I also commend you on trying to educate gps on P.A. (b12).

Ritchie1268• in reply to3 years ago

Thank you Sallyann

I was prescribed everything until I got full blown addicted to OxyContin, the main reason for the Opioid epidemic in the US.

It almost killed me and I almost did it myself due to lack of support. I lost everything I'd worked all my life for due to it after never touching any illicit drugs before.

The government don't fund drug services to help with prescription drugs so it's a post code lottery whether you get help or not. Some will but most don't. It's very complex.

I was turned away by four different drug services for that same reason until one changed their mind after I contacted my MP etc. I was put on 105mils of Methadone as it was Heroin I was prescribed, just legal and from a doctor. I've been free of the Methadone 4 years now.

I swore if I came through it then I'd spend the rest of my life trying to change the governments policies so no one ever had to suffer the same from that same lack of help and support.

I started a Facebook group during lockdown with almost 500 people on it struggling, who's GP has stopped their prescription suddenly due to fear of what's happened in the US, tapered too quickly or are searching for support that isn't there etc etc.

I started getting invites to talk on Webinars about prescription drugs and Public Health England contacted me in October 2020 to see if I'd like to set up a service with their help as a pilot scheme, to then hopefully get funding to do it full time. Obviously I jumped at the chance.

It's only in Derbyshire currently, but hopefully it will show big changes are needed and will grow.

There is only me doing it so I think I'll get really busy once the service gets known about.

I'm also now a SMART Recovery facilitator so that will help with the patients I get referred.

Sorry for waffling on but I could talk about this stuff till the cows come home 😁

Thank you again.

• in reply toRitchie12683 years ago

"Sorry for waffling on but I could talk about this stuff till the cows come home" keep talking, it's the only way progress is made.

I am the same with b12 and nobody will convince me otherwise........ It takes the unfortunate misfortune of experiencing such things and a better life once recovered to be able to help others !

Nackapan• in reply toRitchie12683 years ago

Good for you. Sounds busy but rewarding work.

I'm also on a weekly routine .

2 weekly prescription at present.

Not as up anc running as you yet.

I intend to be though!

T C

Marvelous to hear how you've improved

Ritchie1268• in reply toNackapan3 years ago

Thank you!Hopefully you'll see improvements sooner rather than later! 🤞

You take care too.

Nackapan• in reply toRitchie12683 years ago