Pernicious Anaemia Society
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I've got PA and wonder if I need any other supplements other than B12 shots.

Hi everyone. I'm a 49y.o. paediatrician recently diagnosed with PA (B12 of 79, homocysteine of 69, atrophic gastritis with metaplasia). This is my 5th week of B12 shots (3 times a week, cyanocobalamin) and I'm still feeling weak, tired and loosing weight (specially body mass). I usually work out 4 times a week. My thyroid, folic acid, potassium, iron ant vit D levels are normal.

I wonder if I need protein or any other suplemmentation/special diet. Even being a doctor myself, I can't find articles/guidelines about it. I also read something about betain hcl + pepsin, does anyone can give me an advice on this?

Thank you!

PS my neurological symptoms (pins & neddles for 15 months, burning sensation on my feet) improved with B12 injections.

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Hi Dr

What is your folate level. I understand the value has to be mid range for B12 to be utilised.

What is your iron saturation level?

Have u got a print out of your blood results and if so would you be willing to post them online for perusal.

NB

We are often told by our own medical practitioners that results are 'normal' when in fact they are in the lower end of the range!!

I was wondering what brand of B12 you are injecting. Did u have any difficulty getting it prescribed or did you buy it yourself. I am not trying to be funny with you just curious.

I am also suffering neurological signs and symptoms and wonder about the safety aspects of ordering B12 inj online. Have peripheral neuropathy thought to be caused by statins, ppi;s, antibiotics esp the fluoroquinolones. Low TSH with non cancerous nodules, untreated!!

Hope to hear from you soon.

Best wishes

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Thanks for your quick reply!. My folate is 10.8 and iron sat 29%

As for the B12 my neurologist prescribed cyanocobalamin (Citoneurin, the only injectable source of B12 in my country: vit b1 100mg, B6 100mg and B12 100mcg). Unfortunatelly we don't have purê methylcobalamin, but I ordered from Oxford Laboratories (still waiting...) and will try to self inject

I also take oral methylcobalamin (5000mcg) daily and pray to basorb 1% of that!

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Sorry 1000 mcg of B12 in Citoneurin!

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Hello doctor, I have autoimmune gastritis with intestinal metaplasia as well (diagnosed via endoscopy/biopsy). I have been taking Betaine HCl with pepsin and digestive enzymes. I found that this combination is helpful when taken with protein containing meals.

For 2 years I lost weight without trying and was having digestive issues. Some foods simply would not digest, the ones most problematic for me were lean proteins such as boneless chicken. I have since regained weight since B12 injections and supplementation and my digestion has improved.

My GI suggested taking apple cider vinegar in water before meals in an attempt to decrease stomach pH. Since AMAG makes the stomach less acidic than the pH of a normal stomach, it makes me think about how food and supplements can be broken down effectively in spite of that. Most journal articles seem to be either relatively new research at this point in time or maybe, hopefully, they are works in progress to soon be published.

I've looked online also for dietary guidelines to help with AMAG but have not found anything concrete. Since this disease affects the stomach unlike most other autoimmune diseases many of the "autoimmune diets" seem to be a bit counter-intuitive, at least to me.

I would like to hear what others have found regarding diet as well. Since my GI symptoms are currently flairing up I'd also like to know how to live with this.

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Sorry to interject here but I have reflux and wondered what I could take instead of apple vinegar. I am unable to take ppis due to Long QT syndrome.

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Hi avocado, I think fbirder has a great idea with the lime juice. :)

I remember a discussion on here about PPIs. Check the search for this forum. Since PPIs inhibit stomach acid and with PA we already have low stomach acid, PPIs can add to the problem and possibly cause more problems.

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Can't find that link about PPIs, try an internet search for "proton pump inhibitors and pernicious anemia". I think you'll be glad that you can't take them.

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oh yes, and this one too for all the non-PA PPI poppers:

ncbi.nlm.nih.gov/pmc/articl...

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Hi Cobalamin4life, I have PA with what I suspect (not yet confirmed) is autoimmune gastritis. Endoscopy removed polyps from my stomach that are usually found in the colon. Metaplasia was noted. Haven't had another for years. Pain, hypochlorhydria, and malabsorption.

What has helped so far is betaine HCL with pepsin and other enzymes and Ox bile (no gall bladder). I do regularly take slippery elm powder as a drink, but don't take other supplements except the enzymes near that dose as it inhibits some absorption. Seems to have helped with gastritis symptoms.

It is such a quandary around how to assist digestion!! Malabsorption of iron, zinc, calcium, b12 are all ongoing issues. (I of course have b12 injections). Still have chronic but mild constipation (partly from low stomach acid, low bile but also spastic colon).

I do use l-glutamine for a period of 4-5 weeks then take a break (read up on that one). I also make bone broth weekly and drink it and use in cooking. High in glutamines - healing for gut lining.

I have found sauerkraut the best form of probiotics and take daily.

Would be very interested to hear more of your experience and what you have done/do that has helped. Or info that you have uncovered. Thanks.

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I'm glad you've had success with l- glutamate or l- glutamine. I also used it for stomach issues for several years. I just want to give advise for others. It is the same thing as msg in the body, so if anyone has problems with msg please be careful with these supplements. I had to stop glutamate and glutamine because it gave me severe migraines with aura. It can also cause seizures if anyone is prone to this.

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Great point. I have only used l-glutamine for short periods after a candida and parasite treatment. I now use bone broths which has a much lower amount of glutamines but do have gut healing/allergy healing collagen, proline, glycine and absorbable minerals, calcium, magnesium, phosphorus, silica and others.

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Hello Kate, it has taken me a couple of days but I've straightened out this GI flair. It seems that drinking carbonated water (seltzer) for several days and eating some fried vegetables may have induced it. I keep a food journal to piece things together because I often can't remember what I ate.

Anyhow, since my last post, I've been taking slippery elm caps with a large glass of water before bed, eating some sauerkraut every day, taking Betaine with pepsin with all protein containing meals and avoiding nuisance foods. Of course my nuisance food list may be different than others. It is hard to not turn myself into a science project. I have to forgo the l-glutamine as it would complicate some other matters that I have going on.

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Thanks for sharing your experience. That's exactly what I've been looking for. I'll give betain HCL a try!

You told us you regained weight with B12 shots and supplements. What sort of supplements did you take?

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Hello again, and you're welcome.

I believe my weight regain was from the B12 shots in combination with some additions (actually not vitamins or supplements) to help ease my gastritis symptoms. I found it nearly impossible to eat with the gastritis in full force without some help. I wasn't trying to regain the weight, it was a side effect of having things working correctly again.

I did drink some organic aloe vera juice from the inner fillet of the aloe leaf, not the trendy one sold in supermarkets that is loaded with sugar. Check to see if anything else you are taking could be an issue with aloe, however.

Although I can't recommend it for everyone, I had very good luck with slippery elm in capsule form taken at bedtime in regulating my digestion and getting things moving along. Anyone who is considering slippery elm should check with their doctor before taking it as it can interfere with some medications and should not be taken if pregnant or breastfeeding.

Also I was craving avocados, which is unusual for me. Perhaps my body was asking for healthy fats, folic acid and vitamin E. Thank you for that question, I think I know what I should do about this flare up now...I had forgotten all of this.

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No, you don't need protein or any other supplements (I assume you eat a sensible diet - bits of everything with a lot of fresh fruit and veg).

For the achlorhydria I used to take betaine.HCl but I found it too difficult to titration the dose. Not enough and I'd get the bloating, wind and diarrhoea, too much and I'd get different symptoms - similar to hose I'd suffered when high-dose antibiotics killed off my gut flora.

Now I use lime juice - about 40ml with every large meal, maybe more if I'm going out for a three-course restaurant dinner.

You shouldn't need methylcobalamin as cyanocobalamin is easily converted to methylcobalamin. Indeed, some people (me included) have a nasty reaction to methylcobalamin.

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Re. Betaine HCL + pepsin, by coincidence, this popped into my inbox today in a post by Dr Izabella Wentz, specialist in Hashimoto's thyroid disease, which many on the forum have alongside PA/B12def.

thyroidpharmacist.com/artic...

Personally, I've found being gluten free and daily spoonfuls of Organic Sauerkraut (better than any other probiotic I'd ever tried) works well for my own long standing gastritis and other long standing digestive symptoms.

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Thank you for the information, Polaris. Very helpful.

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I have found that a good quality probiotic (specifically Symprove) and betaine HCL and pepsin has stopped the digestive discomfort, constipation and bloating that I used to have. My appetite has come back and I can eat normally most of the time.

If I forget to take the betaine HCL and pepsin for even a day I start feeling slightly bloated again.

I take the Symprove daily for 3 months and then have 6 months or more off before I start feeling in need of it again.

The weakness and tiredness that I had when I was first diagnosed with PA took a year or so to improve to the point that I was able to cycle and work out again. However, I feel this probably took so long because I wasn't given loading doses. Initially I had hydroxocobalamin every 2 months, then monthly and for the last year I've si weekly and now feel on the best form I've been for years. Being careful with co factors has I think also helped, particularly playing close attention to ensuring good potassium intake and folate.

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Really interesting to read people's thoughts on the digestion issues here. I've been thinking about this a bit recently, as I do feel like my food just goes straight out not totally digested (too much info!), and I've also had two rounds of norovirus this year (apparently low stomach acid makes you more susceptible to it as although it can survive in the high acid environment of the stomach, there is still some protective effect from high acid). I've been vegetarian for many years - I never really liked to eat meat anyway, and suspect I wasn't fully digesting it so my body thought it was pointless. I do have a long lasting weird craving to eat limes and lemons, when I see someone cutting into one I want to grab it and shove the whole thing in my mouth! I think I'm going to try drinking lime water more often and see if it helps. I do a lot of sports and I don't think my body is well fueled for it all at the moment which is making me really tired as soon as I stop. I don't really feel hungry in my stomach, but get that slight dizzy weak feeling like I'm crashing from too little food a lot. I guess food is in my stomach, but I'm not getting much from it.

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