PA & ppi's

[BigCatFreak]

I've been taking a ppi for years. From what I understand that's a bad thing for someone with PA? Is there a suppliment I can take for the reflux I feel instead of a ppi? Or what should I do? I will have major heartburn if just stop taking the ppi. Also have a double hiatal hernia that contributes to gi issues

[Gambit62 Administrator]

PPIs inhibit the absorption of B12 in the gut. If you have been diagnosed with PA and being treated then you won't be getting your B12 from your gut but from injections so taking a PPI won't make a difference.

[clivealive Forum Support]

As Gambit62 says PPI's will not affect the level of your B12 if you are having injections. I've been on them for getting on for 20 years

[Hidden]

I don't intend to be controversial with regard to PPI's and B12, but in general terms reflux issues are caused by low stomach acid, not high. You need high stomach acid, around 1.2 to be able to absorb all your vitamins and minerals which are equally as important. You can increase stomach acid (HCl) by salting your food, the chloride in salt (NaCl) will be used to make HCl. Never drink carbonated (alkaline) water with a meal and you could also use something like apple cider vinegar prior to eating, diluted with a little water at first as it is quite strong.

[fbirder in reply to Hidden]

Sorry , but there are several errors in this.

Reflux issues can be caused by low stomach acid, but can equally be caused by high stomach acid. If treating with antacids fixes the problems then high acid is more likely than low. Also hiatus hernia increases the likelihood of GORD from high acid.

The amount of acid your stomach produces has nothing at all to do with the amount of chloride you ingest (as long as it's above the bare minimum - and if it's that low then you'll have other problems, like your nerves stop working). It's the H+ that defines an acid. Eating too much salt will do nothing to increase stomach acid and can have other, bad effects.

Carbonated water is not alkaline - it is acidic. Normal water is around pH 5.5 because of the CO2 dissolved in it. Carbonated water is a solution of carbonic acid and will have a pH of around 3.5 en.wikipedia.org/wiki/Carbo...

Recommending acidic drinks to somebody with acid reflux is only going to make the situation worse - possibly inducing ulcers.

[Hidden in reply to fbirder]

First of all I did not recommend an acidic drink, I said don't drink carbonated water with food, CO2 neutralizes stomach acid and low stomach acid will hinder the absorption of nutrients. I am well aware its the H+ that defines acidity, and from the perspective of someone who has had (about 30 years ago) a duodenal and peptic ulcer I can assure you that you would know the difference between high and low stomach acid.

Again I did not say that the amount of acid your stomach produces was dependent on chloride, what I was saying was that if you have low stomach acid salt will help the stomach out by cleaving the chloride ion from salt.

I totally disagree with you that if PPI's fix the problem then it must be high stomach acid rather than low. PPI's only take away (or manage) the symptoms but they NEVER cure the problem.

[fbirder in reply to Hidden]

First of all I did not recommend an acidic drink

You said "you could also use something like apple cider vinegar prior to eating"

CO2 neutralizes stomach acid and low stomach acid

No it doesn't. I'm a chemist, I know what I'm talking about. You're probably thinking od carbonates - which react with acids to form CO2.

I did not say that the amount of acid your stomach produces was dependent on chloride

You said "You can increase stomach acid (HCl) by salting your food"

PPI's only take away (or manage) the symptoms but they NEVER cure the problem.

PPIs do not treat the symptoms, they treat the underlying problem - too much stomach acid.

[Hidden in reply to fbirder]

Well, this discussion could probably run and run and threatening me with your credentials does not change my opinion - you make the assumption that the credentials of others couldn't possibly top yours. Relying on wiki speaks volumes.

You are perfectly entitled to your opinion, but they are not facts.

[fbirder in reply to Hidden]

I quoted from Wikipedia because the fact that carbonated water is an acid is such a basic fact that you're not going to find it in any scientific paper. Just like you're not going to find a scientific paper on the question of whether water at STP is a liquid or not.

It's also a fact that I am a chemist. It is my opinion that this fact means I probably know a bit about chemistry, especially the basics. I worked over 30 years as a research chemist. If you find that fact threatening, well there's not a lot I can do about it.

[Hidden in reply to fbirder]

I am not doubting you are a chemist and I don't find that in itself threatening, I just think you appeared to use it in an attempt to discredit what I was trying to say and put me in my place.

I realise that 5.5 is acidic, but if the optimum environment for proper digestion is around 1.2 and you add a liquid to the mix of 5.5 chances are you will bring the acidity of the stomach above the range that is required for optimal digestion. The sphincter is controlled by the acidity of the stomach, if it is too alkaline it will not close properly and will allow a degree or regurgitation into the throat.

PPI's and their genre are absolutely fine if you have an ulcer giving it a chance to heal. The pain from ulcers is excruciating and can put you in bed for weeks eating a diet of baby food but I have no recollection of suffering with GORD or GERD or reflux of any kind when I had an ulcer but we are all different, perhaps some people do.

[helvella in reply to Hidden]

From what you say above and earlier, I am thoroughly confused about what you are saying.

Never drink carbonated (alkaline) water with a meal

AND

I realise that 5.5 is acidic, but if the optimum environment for proper digestion is around 1.2 and you add a liquid to the mix of 5.5 chances are you will bring the acidity of the stomach above the range that is required for optimal digestion.

1 Carbonated water isn't alkaline (for the usual meaning of carbonated water which is water with carbon dioxide dissolved in it).

2 Adding close-to-neutral uncarbonated water (or even truly alkaline water) would surely be a worse thing in terms of raising the pH hence a worse thing to drink with a meal?

3 Why then did you pick on carbonated water as your example?

[Hidden in reply to helvella]

Hello Helvella, I am sorry my post has caused so much confusion and misunderstanding. My comments were based on someone who has low stomach acid, not high.

1. I know carbonated water is acidic (adding alkaline after the word carbonated in my original post was a mistake) my intention was to say it would move the stomach acid away from its optimal acidity towards a pH which is more alkaline and not ideal for digestion. I didn't have a specific reason for picking on carbonated water, just that it seems the most likely thing people with drink with a meal.

2. I think what I said was NOT to add carbonated water to a meal for the reasons above. I said ADD sea salt, and although this idea seems a little contentious I still believe that for those with low stomach acid this will help increase pH. I know many people with low stomach acid who use salt and apple cider vinegar with great success to increase pH. I would never recommend either to someone with an ulcer or known high stomach acid.

It is my belief that acid reflux etc is most often caused by low stomach acid. I have had high stomach acid leading to an ulcer and PPI's helped the ulcer to heal and then I had no further need for them. It doesn't make sense to me that PPI's should be needed long term. However, I am quite prepared to be proved wrong, I have changed my opinions/beliefs more times than I have changed my underwear, after all isn't that what exchange of views and research are supposed to do.

[BigCatFreak]

Interesting...thanks for all the info!

[Marz]

Are you also Hypo ? Low B12 and acid issues are often linked to low thyroid.

[BigCatFreak in reply to Marz]

Just got blood work done Wednesday for thyroid level check still waiting on results. Potassium very low on a recent blood test but no real cause yet for it. Chest pains prompted the potassium check. A few years ago had a nodule on my thyroid that had to be...drained (ew) a couple times...don't know if that is related at all.

[Marz in reply to BigCatFreak]

Hope they test the thyroid correctly and not just the TSH. You also need the FT4 - FT3 tested along with the anti-bodies to obtain the full story. Happy to help when you have your results.

I am not a medic - I have Hashimotos, Crohns and a B12 issue ...

[BigCatFreak in reply to Marz]

Thanks I will get back to you after my test results are in. Probably only tsh. I asked if while they were testing could my ferritin level also be checked...basically they said no b/c I can't request my own test. What nonsense 😡

[Foggyme Administrator]

Hi BigCatFreak. I agree with Gambit62 and Clivealive, so continue with the PPI's if they're working for you. Just be aware that long-term use of PPI's can have other side effects (if you google 'patient information leaflet [insert the name of your PPI]' you'll find information about the particular drug you're taking and can then do further research, if you wish.

You can then make an informed decision about whether to continue long-term or look for an alternative (but as has been said, B12 won't be an issue).

A double hiatus hernia - grief, that's a bit much! Are there any plans for surgical repair (oops...just being nosey). But worth thinking about for a more permenant solution perhaps.

And just a last thought....you say you've been on PPI's for years. Has anybody ever investigated what the root cause of your gastric problems are (hiatus hernias aside)? Doctors do tend to just leave patients on PPI's (happened to me) and some would say that this is just lazy doctoring. Hope I'm wrong 😀.

And as a chemist, fbirder's chemistry is rock solid sound 👍

Take care x

[BigCatFreak in reply to Foggyme]

Hi Foggyme! Congrats on being appointed an admin! I've only been a PAS member & reading on this forum for one month but feel more informed than the last 20 yrs of dealing with PA, so thanks to you and everyone else on this forum for the great info! Basically self injected cyanoCB once monthly & always felt fatigued, clumsy & fog brained. Recently the fatigue is extremely bad & now have neuropathy in my feet & so off balance that I crash into something almost daily. I decided to do every other day shots on my own to see if I get results b/c gp was unwilling since my level was 504...while on injections 🙄

As for the hernias...no plans to do a thing and unfortunately you are correct, I have been on ppi for 25 yrs with only a mention recently that I should get an endoscope to give my stomach a looksee for complications.

[Foggyme Administrator in reply to BigCatFreak]

Grief BigCatFreak. 504 on monthly injections is low. And oh dear, what has your GP been doing (or not). To put this in context, my B12 level always runs at over 2000. Your body needs a level of 1000 (some say 1500) to effect proper neurological repair.

First, I hope he's referred you to a gastrologist (not just an endoscopy clinic). And hope he's doing it, not just thinking about it.

Second, you could also do with a referral to a neurologist to investigate your neuropathy. Really need to check and see if anything else is going on.

And what else has your GP tested you for (sorry, you may have said before but don't have time to look right now).

GP needs to start testing and looking to see if anything else is going on. Anywhere. Diabetis, Full Thyroid Panel, folate, ferritin, full blood count (FBC), IF antiboidies, and that's just for starters.

Do autoimmune conditions run in your family?

And have you thought of trying a different cobalamin - Hydroxocobalamin? Some people find that one type of cobalamin works for them, but others don't. Might be worth a swop to see if there's any improvement.

I know that many people begin to feel worse if their ferritin, folate or other co-factors are out of balance (too low, or indeed, to high). Do you take a good Bcomplex or any other supplements?

You should not have to just put up with these symptoms ad infinitum and I'm really sorry that you're in this position.

And as you have neurological symptoms, you should be having much more frequent B12 injections. Are you in the UK? If so, the information in the PAS pinned posts gives details about the B12 regime for neurological symptoms - but if you get stuck, please post again and we can point you in the right direction.

[BigCatFreak]

I sent a long email to my gp explaining my feelings on a 504 serum b12 & refused another b12 level check if they continue to believe anything over 180 is ok. After the long email quoting my friends at PAS he agreed to a shot every 2 weeks due to neuro symptoms but I don't believe that's enough so I purchased my own cyanoCB & have been secretly administering it every other day for the last couple weeks. Actually feel worse right now but I'm hopeful that means it's working to correct damage.

I have another appointment with my neurologist for more testing on Monday to confirm small fiber neuropathy. If confirmed they will probably just want to put me on some horrible medicine with terrible side effects when all I think I really need is the correct amount of b12! They keep wanting to put me on antidepressants that I don't want or feel I need so I refuse that too.

He just mentioned I should have an endoscope so I don't think he plans to pursue it unless I push for it which I won't until I get some relief from the PA. I don't want to risk losing my job b/c I have all these doc appointments so I pick & choose which I feel I need most.

They checked all the things you mentioned except ferritin which I requested 2 days ago with blood work but they said no b/c I can't request my own test! I take magnesium, vit d, turmeric curcumin, a probiotic & just started taking methylfolate & potassium since I increased b12 shots to every other day. I am looking into a "super-b complex" that may be helpful.

I had an aunt with diabetes & PA but that's all I know of. She was basically in a wheelchair completely out of it & now I suspect it was b/c her b12 was way too low!

I'm in the US & am only familiar with cyanoCB in 10ml vials (not ampoules) Since I chose to increase on my own I stuck with what I knew to see if anything improves. I may seek out hydroxoCB in the future.

It's so frustrating and I feel awful but my parents only slightly understand & my husband not at all. I spend all my energy every day going to work but get hardly no help at home. I opologize this is so long but it's nice to have others to talk to who understand & have advice.

[Foggyme Administrator in reply to BigCatFreak]

Hi again BigCatFreak. Just a couple of things...

A gastrology appointment and endoscopy is the way to go to get to the bottom of your PA and gastric problems (the two are often inextricably linked) so you may be avoiding (albeit with good reason) the very things that will, hopefully make the most difference. The gastrologist will (or should) specialise in PA and the endoscopy will give him information that will enable him to treat you properly so that you can get well.

And...I note you say you have just started taking potassium. Not sure if you are aware but it is extremely dangerous to take potassium supplements unless under direct medical supervision. i would advise you to see your doctor so that your potassium levels can be checked, then your medic can perscribe potassium supplements, if required. Excess potassium can cause heart attacks - as can to little (plus a host of other nasty symptoms). Most people get additional,potassium from food (I.e bananas, low salt etc...more ideas on the internet if you search)...it's the only safe way to do without medical supervision 😀.

Not sure who refused to check your ferritin levels? You should ask your medic to order a blood test for the ferritin levels. Or you could order it privately - but not sure how this works outside of the U.K. This is important because if your ferritin is low you'll feel really ill indeed and it may make you so unwell that you will not be able to work.

So...anyway...take care and let us know how it goes 😀

[BigCatFreak in reply to Foggyme]

Thanks Foggyme i will work on getting an appointment with a gastrologist as soon as I get through some of these other appointments.

My potassium was 3.0 on a scale of 3.5 - 5 so I took a weeks worth of prescribed potassium which brought it up to 4.5. (Along with a massive headache during that week) No explanation has been given for why it was low & I was told it doesn't just go low for no reason. I didnt want a repeat of the chest pains & shortness of breath that came about when it was low so I purchased 99mg potassium supplements thinking it would keep me from going low. I will check with my gp before I continue to supplement.

The nurse performing my blood draw told me I couldn't just request a ferritin level check. I sent my gp an email requesting it be checked before I went for blood work & I never heard back from him.

I am patiently waiting on my results & to see what was actually tested.

[Marymary7 in reply to BigCatFreak]

Keep your spirits up. You will get there. 😀

[fbirder]

I have another appointment with my neurologist for more testing on Monday to confirm small fiber neuropathy. If confirmed they will probably just want to put me on some horrible medicine with terrible side effects

If the neurologist is any good then they'll try to find the cause behind the neuropathy. So far the only drug mine has suggested is a high dose of steroids - which should stop the pain for a while. I've delayed my dose because it might interfere with my nerve biopsy next month. We're both hoping that will give some big clues as to the underlying cause.

[BigCatFreak]

I have lost faith in doctors...was treated for plantar fasciitis for a while with no improvement until I gave up & my gp decided to send me to a neurologist. I am having the biopsy on Monday as well so good luck with yours! Someone mentioned lyrica for neuropathy so that's why I was skeptical.

[Marz in reply to BigCatFreak]

Plantar fascitis is also common with low thyroid ..... Good levels of T3 needed for every cell in the body - hence why FULL thyroid profile is needed 😊

Hope all goes well with the appointments ...

[BigCatFreak in reply to Marz]

Thanks Marz thats good to know.

[fbirder in reply to BigCatFreak]

Ah, yes, pregabalin (Lyrica) is often prescribed for neuropathic pain. I take gabapentin (a very similar drug) for my pain. The only side effect I have is that it helps me sleep - but no drowsiness during the day. The sleeping at night may just be because of the decrease in pain.

The dose I take (300 mg thrice a day) is one-quarter of the maximum recommended dose, which may explain the minor side-effect.

[BigCatFreak]

My WBC also keeps increasing to double the high end with every blood test but they don't investigate that further either.

[Foggyme Administrator]

Hi BigCatFreak. High white blood cell count can be due to a number of causes (i.e. Infection, an autoimmune disorder, reaction to certain medications, bone marrow issues etc.).

Can't believe your GP is ignoring this, especially when it's raised every time you have a blood test.

I'd be very blunt - next time you see him just ask him if he could explain why he's ignoring it 😀.

Good luck x