Hi there folks, had PA for decades and b12 injections etc, but recently developing carpal tunnel syndrome (which can be exacerbated by low b12). I'd like to add systemic enzymes to my supps as they can assist with CTS.
Blood tests always show high levels of B12. Sometimes wonder if I still have pernicious anemia but still seem to get symptoms of low b12 after a few months of no injections (nerve pain in feet, forgetting names of 'things' and clumsiness)
Had stomach pain off and on (I stay off gluten, dairy and try to eat healthy)
So wise PA community, my question is:
Anyone know whether it's safe to take enzymes on empty stomach given possible low mucus protection in my stomach lining?? I also take Betaine HCL which helps with digestive issues but do wonder about my stomach lining health. Any thoughts appreciated.
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Katejc33
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Hi Katejc33 I think we "met" last night on "Patient" when I couldn't be of any help regarding systemic enzymes. However, hopefully there are others on here who will be able to answer your question.
Why have your B12 injections stopped for "a few months"? P.A is for life as too are the injections. I also asked about your Folate level.
Hi Clive, thanks for your comment. as I mentioned my b12 levels come back very high so the doctors are reluctant to regularly give me the injections. I supplement with sublingual high dose activated b12. I still do get some symptoms after a couple of months and I suspect this carpal tunnel is part of it.
I did actually respond to your post on patient.com but expressed my frustration with doctors in my region (rural australia) 8 hrs later My post is still under moderation (maybe the moderators don't appreciate doctor criticism??? - don't know).
I did also mention that I thought I had methylation issues and was supplementing with activated folate but experienced a lot of nausea subsequently. Don't know my current status.
Really just want information around PA and the stomach lining and what others have experienced. Hope someone can add to the brain pool??
Yes your reply is still being "moderated" - I've just checked.
I often get "clobbered" so I always "block/copy" my comments (just in case as there nothing more annoying than spending 20 minutes replying to have it "moderated" because I used a "wrong word" according to their "filter") and send what I've written using the private mail function by clicking on the envelope underneath the intended recipient's name.
Any doctor worth his salt should know that testing B12 levels of P.A patients is next to useless - unless the result come back low.
Haveyou tried taking folic acid that you can buy across the counter at your local pharmacy?
Hi Eaoz, While I appreciate your implied skepticism and possible concern around my intention to use systemic enzymes, please be assured that I have used them very successfully in the past to treat old scar tissue in my legs. I will use them again but I do have concerns around the stomach lining, enzymes on an empty stomach (taken at night) and having PA. I do hope someone here can cast some informed experience on this area? Thanks
Once on B12 injections, measuring serum B12 is irrelevant - page 4 of the latest BMJ research document below:
"Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment,24 and retesting is not usually required".
‘Standard initial therapy for patients without neurological involvement is 1000µg intramuscularly three times a week for 2 weeks. The BNF advises that patients presenting with neurological symptoms should receive 1000µg i.m. on alternate days until there is no further improvement’.
Patients with Pernicious Anaemia need treatment for life regardless of serum cobalamin levels and the symptoms you have described are neurological.
..........
Re, carpal tunnel syndrome and stomach issues, I'm wondering if you've had your Thyroid tested ? Hashimoto's autoimmune Thyroid disease often goes along with PA and symptoms overlap.
I found being gluten free and eating daily spoonfuls of organic sauerkraut (better than any other probiotic I'd ever tried) relieved all digestive issues I'd suffered for years (as many with Hashi's do).
Optimal thyroid treatment also healed the carpal tunnel syndrome.
Thanks Polaris, I've actually been on a long healing journey for two decades with Cfs/ME, fibromyalgia, Shingles, pyroluria, diseased gall bladder, megalocytivirus, Hashimotos, Pernicious Anemia, herniated discs and Hep B. Healing progress has actually taken heroic lengths to heal my gut, chronic Candida, parasite elimination, restore flora and heal the lining. I have come a long way but I know I have a way to go. Actually I realise that I have given very little energy to the issues around Pernicious Anemia. So with this arising of carpal tunnel in the last week it is bringing some focus to PA and I am on a learning curve.
Feel like issues around Hashimotos have mostly been addressed but am heading into some deeper healing work around chronic viruses and working to get them to a dormant state.
What I do want to know is about issues like atrophic gastritis from PA? The increased risk of stomach cancer?. How to protect my stomach lining given low mucosa? How to protect my health from parasites given such low stomach acid? How to absorb zinc, iron, calcium effectively given low stomach acid?
These all seem to be the main issues when I look at PA and my system.
I'm so glad to get a clearer idea around B12 testing and will work to have more regular injections. This is so helpful!
Still not sure where folate fits into the picture with PA?
Where to start ! I've been particularly interested in the gut/brain connection too, having been plagued with gastritis, acid reflux, H/pylori, IBS, gall bladder symptoms, over the years.
Dr Datis Kharrizian, a leading neurologist, lecturer and researcher at Harvard, has written two important books on Autoimmune Thyroid disease and the brain/gut axis.
You may also be interested in these links, the first originally posted on the TUK site by scientist/advisor, Dr John Midgley ('Diogenes):
Dr Marc Ryan's Hashimoto's page on Facebook has interesting posts on healing the 'little brushes' (microvilli lining the digestive system) with digestive enzymes too.
About folate and PA...or rather, the B12 deficency caused by PA.
Vitamin B12 and folate work together so if folate is deficient or low, the body cannot utilise vitamin B12 properly...so it's essential that folate levels are adequate (being at the low end of the reference range is not sufficient for people with B12 deficiency - though many GP's don't realise this.
I note you say that you have been supplementIng with 'activated folate' and assume by this you mean methyl folate? Methyl folate can cause some nasty side effects and very few people need to take methyl folate (despite some of the hype you may read on the Internet). Very few people with MTHFR gene variations actually need methyl folate and some people with specific gene variations should not take it at all.
So...might be a good idea to stop the methyl folate (if this is what you're taking) and change to folic acid (depending on folate levels).
It would also be a good idea to get your folate levels checked if you can since over supplementation with either methyl folate or folic acid can cause side effects and even long term damage.
It's important that you do not take methyl folate and folic acid at the same time.
Also note that your going to start taking a B complex. Many of these have excessive amounts of vitamin B6 (well over the RDA): over supplementation with vitamin B6 can cause potentially irreversible neurological damage - so good idea to check the amount of B6 contained in the B complex. It's best not to supplement with B6 at all unless your levels are deficient, since even small amounts of additional B6 may be too much for some people - and therefore have the potential to cause damage.
I note that you say that your symptoms of B12 deficency return prior to another injection being due - this is a sure sign that you need more frequent B12 injections - especially as some of your symtpoms appear to be neurological ones. Carpel tunnel syndrome is also a recognised symtpoms of B12 deficency - so increased frequently of injections might help with this too.
About the betaine HCL - I took this for a short while - didn't work for me - seemed to exacerbate my gastric issues. Polaris ' recommendation for saukeraut is a good one: some people also take lime juice in water or apple cider vinegar prior to eating to aid digestion - often reported in the forum that these work very well.
Symprove (a probiotic) is also often recommended (though it's quite expensive): some have an initial course of this and then change to Bio-Kult (another probiotic).
So...good luck with your quest for better health...from what you say, it sounds as if more frequent B12 injections will help with this.
Hi Foggyme, wow lots of great info here. Yes more b12 seems indicated if I can convince the doctors.
Interesting what you say about b6. In my case I have pyroluria so b6 is chronically leached from my system via urine. I am currently on about 55mg per day. Not imagining that I have excess but it sounds important to bear in mind re neuropathy symptoms. My understanding is the safe upper limit is 100mg per day, but there do seem to be rare possible cases of neurotoxicity at lower levels.
I'm not taking methyl folate at present, just the small amount of folic acid in the multi b.
I do find sauerkraut great. ☺️
I suspect chronic shoulder and neck tension is half the picture at present re CTS. And looking at my phone too much 😕!!!
Will try the supplements and see an osteopath and massage therapist.
Haven't heard from anyone re atrophic gastritis and PA? Wonder if it's quite rare maybe or maybe underdiagnosed in the PA community.
Hi Katejc33. First, sorry for not replying before...been an infected blob but now recovering...
About the PA (which is not curable) and atrophic gastritis...here's some links that might (or might not 😀) provide some answers for you...(sorry, haven't time to,sort through and see what's most relevant)...
Also - been looking at Betaine HCL again, and it's contraindicated in cases of active gastritis (as opposed to atrophic gastritis) - a bit like pouring acid on an open wound (and perhaps why I couldn't take it 😖).
Thanks for these links Foggyme, I found the autoimmune dysmotility very useful.
I am one of the people that you were mentioning Katejc33 - I have chronic autoimmune atrophic gastritis and PA , as a result of which I'm also one of the very small number of people with PA who have gastric NETs (neuroendocrine tumours, they used to be called carcinoid, because it was believed that they were cancer like, but now it is known that they are cancer and can, and do if not caught early enough, metastasise). They are rare slow growing neuroendocrine cancers which are not likely to be life threatening when small but it is not unheard of, as even the experts cannot yet predict their behaviour - I will have yearly endoscopic ultrasounds for the rest of my life and, when there is growth noticed, I will have surgery to remove them - my risk of developing gastric adenocarcinoma is slightly higher due to having NETs but again that will be noticed if it happens.
Needless to say I have issues with motility and would like to try ways of improving my poor digestion (I asked my NET specialist/gastro professor about vinegar or lemon juice and he said no point as they would only make me feel ill). I have read all of these posts and am willing to try the supplements that have been suggested. I'd like to know if anyone could tell me how much and how I should take lemon juice or apple cider vinegar.
I also have IBS, diverticular disease, hyperparathyroidism (for which I am awaiting re op surgery) and am borderline hypothyroid from time to time.
Hope it's appropriate to post all this here, apologies if not. Good luck everyone.
Wondering if you have your recent thyroid results with ranges. CTS can also be closely linked to low thyroid as well as low B12 and often a dose tweak can resolve things.
Like you I too have had a long and complicated health journey - Hashimotos and a B12 issue diagnosed late in life - now enjoying better health taking T4/T3 and weekly B12 injections.
Thanks Marz, my thyroid seems to be going alright, as long as I can keep gluten out of my diet, take t4/t3 and selenium. Weekly b12 injections sounds like quite a lot? Maybe I need the same? Getting a doctor here in proverbial woop woop to give me b12 more regularly will be interesting to say the least.
Yes, I reckon I could. An old integrative doctor I saw some years ago suggested that to me. I also wonder about b12 patches?? Do you know of anyone's experience with these and PA?
I have taken Bromelain and noted it acted like a mild pain killer which I wasn't expecting. Research showed it does act as a mild analgesic and anti inflammatory. I have stomach issues (improving with no gluten and a lot of care) so usually took it around meal times, or with half/quarter of a banana at night. For inflammation it is recommended to take it as you say, on an empty stomach. But I don't think personally I'd take it on a completely empty stomach. It was effective for me taken with small amounts of food and improved digestion as well as helping with pain.
I had read a news feature years ago about a young woman who had vastly improved her M.E. symptoms with Bromelain which is what led me to try it.
Interesting Frodo. The digestive enzymes I take have brome lain, papain, betaine hcl, Ox bile (I have no gall bladder), and a few other enzymes. I always take them with food.
The systemic enzymes I was considering are v potent and taken last thing at night on empty stomach. I'm wary that I might just digest the compromised lining of my stomach!! Have you had a gastroscopy to see how your stomach is going??
Hi Kate, no, I haven't had a gastroscopy. I couldn't get them to take the stomach issues seriously so I've had to sort them myself which has taken a long time. If I hadn't managed to effect some improvement I would have had to go back and try again to get help. NSAIDS were part of the problem and so I stopped them a few years ago - but now don't have adequate pain relief for migraine etc.
I don't know, but I should think if the enzymes are harmful to you, you would experience pain quite quickly and could then stop taking them. But given what you've said, I don't think I'd take them on an empty stomach if it were me.
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