Pernicious Anaemia Society

Newly diagnosed

Hello. Just received a diagnosis of PA two weeks ago. My primary symptoms are weakness and nausea. I'm taking shots every week (4 weeks then review of levels) and 50,000 u of Vit D. per week for 8 weeks. My initial level was 68. Next week I'll be learning to give my own shots (kinda nervous about that one.) Reading these post have been very educational and encouraging. I try not to get nervous about it but this is the first time I have been seriously ill although I understand I have had the disorder all of my life. I'm 52. My biggest fear is fainting while speaking (I am a public speaker).

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Hi tray52 are you in the U.K?

Do you know what your Folate level is?

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I’m in the US. No I’m not sure about my folate level. Reading about it on this site is the first I’ve heard about it.

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For your information:

"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, lima beans, soybeans, beef liver, brewer's yeast, root vegetables, whole grains, wheat germ, bulgur wheat, kidney beans, white beans, salmon, orange juice, avocado, and milk. In addition, all grain and cereal products in the US are fortified with folic acid".

Vitamin B9 (Folic acid) University of Maryland Medical Centre

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Thanks again for the information. I will speak with my doctor and ask her to check my folate level. She did check my vitamin D level which was low.

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If you have been B12 deficient all your life , it will take quite some time to recover, so please don’t get impatient with slow progress . PA can also cause low /no stomach acid Hypochlorhydria/ Achlorhydria , which can cause nausea . I had this and corrected it with probiotics .

A good multivitamin and mineral is an advisable supplement , paying special attention to folic acid content which works together with B12 .Folate ( naturally occurring folic acid ) found in green leafy vegetable and peas , is a good addition to your diet .

Have no fear of self-injecting . I inject into my thighs ( look for videos on the subject ) I use a very fine needle -25 gauge .1inch long to reach into the muscle . I also use a different longer needle to extract the B12 from the ampoule . Then the injection needle is absolutely sharp and painless . Best wishes to you .

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Thanks so much. I’m getting emotional from the support. I was going to say you have no idea how much this helps me but I guess you do. Eternally grateful to you and everyone on this site.

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Nausea???? My only symptoms of h pylori, which is a root cause of b12 deficiency, was nausea and feeling full faster than usual. Have you been tested? Please ask for it, even if only to rule it out.

I was diagnosised with a b12 (169) and D (20) deficiency in Oct 2014 and was not tested for h pylori until Aug 2017 when i had to argue with my doctor for the test. I was positive.

I had been taking b12 and D tablets for almost 3 years, while i got worse, before testing for for h pylori.

H pylori can cause hypochloridia, low stomach acid, which can cause malnutrition, even though you eat well.

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Hi KimberinUS!

I have nausea and feel full very fast since the birth of my daughter 4.5 years ago, I started to experiment all B12D symptoms at that time.

I eat and have to stop suddenly between two spoons, sometimes I cannot even swallow what I have in my mouth.

What is the H pylori test? Which kind of doctor takes care of it? Did you manage to get rid of it? What was the treatment?

Thanks!

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H pylori can be tested using a blood, breath, or stool sample. The breath test is considered the most accurate.

For a breath or stool sample test you cannot have taken any proton pump inhibitors (medications to reduce stomach acid such as prilosec or previcid) or bismuth (pepto bismal) for at least 2 weeks prior to testing.

Additionally you cannot eat, drink or smoke for minimum of 2 hours prior to breath testing.

Any doctor can request the test, if they want.

Treatment is varied.

Minimally, 2 different antibiotics daily for 1 to 2 weeks.

Triple therapy includes adding a ppi 60 mg daily, so four pills.

Quadruple therapy adds pepto bismal 2X daily.

I was positive twice. First treatment did not work.

In between first and second treatment i did alot of research which shows a probiotic can help. I used one starting on day 9 because i got some serious diarreah on appox day 7 of treatment even though i was on quadruple therapy which has pepto which is supposed to help with diarreah.

The pepto in treatment is used because h pylori might be attracted to the metal in it, similar to how h pylori likes iron.

The ppi is used to reduce stomach acid so the h pylori floats further away from stomach lining before detecting increased acid, so the antibiotic can "work on" or "get to" the h pylori to kill it.

Some research shows NAC reduces the biofilm that h pylori uses to protect itself from stomach acid but without antibiotics the h pylori isnt killed.

Treatment, especially shorter length treatment (7 or 10 day) can reduce h pylori without killing all of it. Therefore testing 8 weeks after treatment is necessary to see if h pylori has re colonized again.

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Hi KimberinUs. I was tested for h pylori and the result was negative. The nausea is getting better with shots. My doc prescribed nausea meds but I’ve opted to suck on peppermint or drink peppermint tea. Seems to help some.

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Hi,

I just took the H Pylori test too and the result was negative.

Does someone know what are the other possible causes (nausea, stomach ache, B12D)?

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Hi Marybrown06. I also have issues with digestion related to PA. Usually occurs during or after bowel movement. Thanks to Wedgewood, Clivealive and a few others I have isolated when and why the nausea occurs. I was placed on Nexium for 14 days which worked wonders but instructed not to take it beyond that. After the 14 days my symptoms of nausea and diarrhea returned but thank God the weakness isn't there. Noticed some brain fog right before digestion as well. I've found that not eating after 7pm makes digestion issues worse. Also, eating well and keeping my stress down by turning off my cell phone religiously for a few hours per day or doing basic yoga has lessened my symptoms (especially brain fog). I am definitely going to try the probiotics and drinking more water. I did tell my physician about the reoccurring digestion problems but haven't heard back from her yet. I found a Hematologist in my area that specializes in PA and blood disorders that I'm going to see as well. I'm not sure if it's a good idea to have more than one doctor but it seems to be working well for me because they are all working together to help me.

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I meant to say eating after 7pm makes digestion worse.

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Thanks a lot! Very helpful :)

Did second treatment and probiotics work? Do you still need to take B12 supplements or injections or are you totally "cured"?

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Review of levels is no use if you’re injecting as it will always come high. It’s mostly how you feel with 4 weekly shots. Some people need more (I inject 1 every 2 weeks), but see how you feel and then inject if you feel you need more.

Also get Folate (Folic Acid), Ferritin (Iron) and Vit D levels checked. It’s recommended to take Folate when injecting with B12 as they work together. Daily recommended dose of Folate is 1 tablet daily 400ug.

Sorry you said you take Vit D. You may need to take a lower daily dose of Vit D after 8 weeks for maintenance but check with doc for what dose you need to maintain your Vit D levels.

Wish you well.

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