Looking for additional vitamin help - Pernicious Anaemi...

Pernicious Anaemia Society

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Looking for additional vitamin help

1Thesaint1 profile image
9 Replies

Hi guys, first poster here.

I have pernicuous anemia and have injections every 10-12 weeks, although some injections barely last a month and im left feeling terrible, the bloating and nausea and brain fog aint great either.

Im always reluctent to try new things and i know i wont ever self inject as im not a fan of needles.

What im looking for is some information on what vitamins i could have that would additionally help with the tiredness, bloating ect.

A kind user was very helpfull regarding iherb website with b12 liquid so i will order some of that in the hope for some sort of a boost.

Any advice or help would be greatful.

Thanks guys

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Hamayeshguy profile image
Hamayeshguy

Slow release B12 also works but it's costly. You can add B12 liquid to water and drink it whole day and if possible at night. But at night you can take slow release B12. I think 15000 mcg a day can help as I take and also inject everyday since I have too much symptoms. Inject hydroxocobalamin every other day and cyanocobalamin next day. But I want to reduce it to every other day since it doesn't make symptom improvement faster. My muscle are so weak with severe numbness, pain and double vision along with blurry eyesight, umbilical hernia. But in the last couple of days I saw some improvement. Don't forget to take b complex with low B6 and methyl folate (5-mthf). Check your feritin and Don't let it to go down under 45 Ng/ml

1Thesaint1 profile image
1Thesaint1 in reply to Hamayeshguy

Thanks v much for your reply hamayeshguy.Sounds like your having a torrid time, i hope you see some improvement soon.

Yeah blury vision also here aswell as the muscle aches.

I never realised so many things were related to this condition.

Thanks your your advice.

wedgewood profile image
wedgewood

You could try sub-lingual lozenges ( Amazon Smile and choose Pernicious Anaemia Society as your charity ) Also B12 nose or mouth spray also at Amazon . Just to tell you that these do not always work for Pernicious Anaemia patients . They don’t work for me , a PA patient diagnosed with a positive Intrinsic Factor Antibody test. I had to turn to self -injecting weekly . But there are devices that might tempt you to self-inject ( auto-injectors )If the above don’t work, there are beauty salons that offer B12 injections at very inflated prices . They can only make claims that are not medical eg weight loss , anti ageing .I will send you a help sheet . It might interest you , especially for the gut problems which i also endured , but are now gone .

I would also take a modest vitamin and mineral tablet , because PA patients have low/no stomach acid ( Hypochlorhydria/ Achlorhydria) because the acid and Intrinsic Factor are annihilated by the antibodies that that auto-immune condition produces . The lack of stomach acid leads to imperfect absorption of minerals and vitamins .

Very best wishes

1Thesaint1 profile image
1Thesaint1 in reply to wedgewood

Thanks very much wedgewood.Yeah the auto injectors sound ok may look into that.

Never knew you could get b12 injections from beauty salons.

Yeah would love some help on the gut problems

thanks very much

wedgewood profile image
wedgewood in reply to 1Thesaint1

Not all beauty salons offer B12 injections , but I’m sure you could find some in your area . Anything from about £30.00 upwards . A self-injection costs about £1.60 One B12 ampoule, 1 withdrawing needle , I injection needle , One 2ml syringe . included ! .

1Thesaint1 profile image
1Thesaint1 in reply to wedgewood

Jeez 30 pounds upwardsThink i may have to be getting myself an auto injector

Thanks again wedgewood

Nackapan profile image
Nackapan in reply to 1Thesaint1

Also you might find subcutaneous injections easier. I do those.

A fine shorter needle. 30G 1/2 "

I wasn't keen but seeing my husband doing 4 a day of insulin got on with it and haven't looked back.

Still have IM at the surgery

wedgewood profile image
wedgewood

This from a beauty salon bear me !

Normal
1Thesaint1 profile image
1Thesaint1 in reply to wedgewood

Thats shocking

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