Questions from a newcomer?: Hello there... - Pernicious Anaemi...

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Questions from a newcomer?

BC1980•

Hello there, I have low b 12 (145) with a barage of neurological symptoms that have come on the past two weeks. So i started administering a 100 mcg doses of cyanocobalamin (b12 shot in Canada) for myself which i intended to give myself everyday this week, as im in more of a rush to limit neurological damage. Any advice? What quantity and frequency should i be administering? Is Methylcobalamin a more effective B12 shot i should be taking? Im new to this. Also im being sent to get a test to confirm my PA diagnosis which i suspect. Will the fact ive started to taking shots effect the results? Is there a b12 nasal spray just as effective as the b 12 shots that can go to the bloodstream? Sorry for all the questions. Im just a little overwhelmed, trying to find the most effective way to treat and limit damage. Thanks

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BC1980

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Nackapan3 years ago

The regime in the UK is every other day for 2 weeks or until neurological symptoms settle. Then every 2 months . Some need a higher frequency.

Cynocobalamin is a good source and I know easily available in Canada.

If there Is a high serum b12 level it can affect IFA test but they are more reliable now so I shouknt worry at the moment. Important thing is getting the b12 in you.

BC1980 in reply to Nackapan3 years ago

Thankyou so much for your info. Extremely helpful advise for a newbie here.

Nackapan3 years ago

It depends on the reason for your deficiency

If dietary tablets and sublingual s work.

If not injections are needed for life.

Hope your respond well to them.

There are many more on here with .much more knowledge than me

Stick with it TC

Also get your folate ferritin iron vit d thyroid checked on next bloods.

Initially eat more potassium rich foods potatoes bananas coconut water ect

Many posts to look through if you use the search magnifying glass ( I only state this as I'm not techy and missed it!

fbirder3 years ago

I'm guessing that 100 mcg is a typo and you meant 1000 mcg, which is the standard amount.

After 7 days of injections I would carry on with one every other day, until your symptoms stop improving.

After that I would switch to once a month, increasing the frequency if symptoms start appearing.

No, methylcobalamin is no better, and possibly worse, than cyanocobalamin.

The test for PA (antibodies to Intrinsic Factor) is notoriously unreliable. About half of people with PA test negative. Try to leave a few days between your last injection and the test.

If your deficiency is caused by PA then no form of oral B12 (including nasal sprays) can help. Otherwise tablets will be just as good as a spray.

If, after a few weeks, there is no change to your neurological symptoms you must see a neurologist. Indeed, I would see one anyway. There are many possible causes of neurological symptoms. Guessing that they're caused by B12 can waste valuable time.

BC1980 in reply to fbirder3 years ago

Thankyou for responding and sharing your knowledge. I ll book an appointment with a neurologist for sure.

Litatamon in reply to BC19803 years ago

Don't have huge expectations about a neurologist knowing anything about b12.

I got my appointment due to suspected trigeminal neuralgia, and I found out I was b12 deficient at the same time.

I told him my b12 shots had most likely healed the nerve issues.

He was having a GP shadow him in the appointment. He said he rarely if ever sees people with b12 deficiency. Laughing. They must be too busy masquerading as his MS, dementia and trigeminal neuralgia patients.

He also suggested I eat more food high in b12.

So crossing my fingers for you but please don't get your hopes up.

-------

I am in Canada. Just want you to know that Wal-Mart has the cheapest cost for vials. But they usually only carry Sterimax. There are two suppliers. My doctor's office uses Sandoz vials. Which is what most pharmacies carry.

I find Shopper's Drug Mart the most expensive.

Many on here are against using multi-use vials. But I have had no issues. I simply throw them out around 28 days, no matter how much is left.

All the best.

BC1980 in reply to Litatamon3 years ago

Thank you for your response. It’s super helpful!

wedgewood3 years ago

As a newcomer , you may not be aware that you cannot overdose on B12 , which is a good thing to know . You can overdose on folic acid . It’s not good to take large supplementary doses , only under medical supervision . A 400 mcg is a reasonable daily dose, and even that’s not 100% necessary if you have a good dietary intake "

BC19803 years ago

Appreciate that tip thankyou!

Bebygirl3 years ago

Go Gluten free and your supplements will work, but as long as you feed your body with a gluten, expect more or the same issues. I take my own B12 and Folate supplements, I am at week 6 and no longer walk around like I am drunk, my memory issues have cleared up quite and bit, my muscles don’t hurt as much. If you must have an official diagnosis, try just getting a blood test at a testing facility such as LabCorp or Quest, this is how I knew my folate was low, but B12 anemia and Folate anemia, mirror each other. I saw immediate results from going gluten free with my other symptoms that you haven’t listed here. Make no mistake, I take high amounts while my body heals, folate has been able to dimish after the first month, but my B12 is still needed, as well as the Vit D, Calcium that I take. My back doesn’t hurt as much, sans in the morning when everything has worn off, and that speaks to the amount of damage gluten has done to me. It takes time to get ill, and it takes time to fix it. Don’t dispare, correct it yourself and let your body tell you what you need, just for reference I take 65mg of iron 2x a day, b12 is 5,000 mcg x 6, Vit D 10,000 IU 2x per day, and Folate 800 mcg 2x per day, ALL of these were doubled in the first 30 days, and I just simply forgot to take some of it as I would only take a supplement when I felt bad, this is how I figured out my needs, I am certain yours will vary from mine. Also, of a notable point, I have heart palpitations or anxiety like you wouldn’t believe, it becomes manageable when I have been up for four hours and the supplements are working, but it returns as soon as they wear off. I think you already know the path you’re on, I just hope you will consider my personal opinion and either contact a nutritionist, or go to forums where people just like me are, or have suffered similarly to yourself, and what they did to fix it, without the need of expensive tests, or the ignorance of most practitioners out there.

BC1980 in reply to Bebygirl3 years ago

Thanks for your information. I will definitely stay gluten free and take the supplements you listed. Cheers