HCL - advice please: I have PA and... - Pernicious Anaemi...

Pernicious Anaemia Society

31,915 members23,042 posts

HCL - advice please

ren41 profile image
16 Replies

I have PA and Hashimotos. I knew that I would have low or no HCL because of the PA but only read recently that Hashi's also caused low HCL. I have bought some HCL with pepsin but not yet taken any. I wondered if you should just take the capsule(s) with your evening/main meal, and also if you should take them regardless of whether the meal contains meat or not - can anyone advise, please?

I asked my GP if HCL was available on the NHS - it seems like it will be pretty expensive if I have to take more than a few capsules every day - and told her I did get occasional bloating and acid reflux. She wanted to give me an antacid, and when I explained that was the last thing I needed, she admitted she knew nothing about PA.

Written by
ren41 profile image
ren41
To view profiles and participate in discussions please or .
Read more about...
16 Replies
clivealive profile image
clivealiveForum Support

Hi ren41 As I understand it (and I'm not medically trained) P.A. and Hashimoto's affects the Vitamin B12 levels in the bloodstream because it cannot be processed via the digestive system and if (I assume) you are receiving B12 injections for your P.A. you don't necessarily need to elevate your HCL or not take antacids as and when necessary.

I've had P.A. for 46 years having had two thirds of my stomach removed, suffer frequent acid refluxes, been on PPIs for over twenty years and often have recourse to taking Gaviscom.

ren41 profile image
ren41 in reply to clivealive

Hello Clive

that's interesting; my understanding was that the damage by the immune system to the parietal cells in the stomach prevented both IF and hydrochloric acid from being formed. Maybe as your PA is as a result of surgery and not autoimmune, you will still produce some HCL?

mightydrunken profile image
mightydrunken in reply to ren41

PA is a name for two similar conditions. Both are auto-immune diseases which severely limit your ability to absorb B12 by destroying production of intrinsic factor.

One involves the destruction of your parietal cells by the immune system, the other involves antibodies to intrinsic factor.

fbirder profile image
fbirder

I had terrible symptoms caused by achlorhydria (lack of HCl). At first I, too, used betaine.HCl capsules. I would take one or two with each large meal. One if it were a veggie meal, two if there was a lot of protein, as it's a problem digesting protein that causes the bloating and diarrhoea. The source of the protein doesn't really matter.

But I found it difficult to control the amount and I twice suffered what I later recognised as an almost complete death of gut flora (I'd had it before after being treated for food poisoning with strong antibiotics in Egypt). It took a week taking Symprove to fix it.

I'd read of people using apple cider vinegar, but I didn't fancy that. After a bit of playing around with some pH paper I realised that lime juice was just as acidic and tasted a lot nicer (especially in a G&T). I now take 30 to 40 ml with my lunch and dinner.

If I'm out for a meal I will take the betaine.HCl - but just a single one.

That system, plus BioKult every other day and probiotic yoghurt daily has kept my GI tract happy.

ren41 profile image
ren41 in reply to fbirder

so even if you aren't producing HCL, you may only need 1 capsule? I drink kefir so I think that should work for gut flora. I don't get symptoms all the time - unless you count burping! The line juice seems a lot cheaper, if it works just as well - is that 30 - 40ml undiluted?

fbirder profile image
fbirder in reply to ren41

Yup. I buy Chef's Kitchen lime juice from Amazon. £24 for six litres. Lasts a few months.

Cwilli profile image
Cwilli

Hello Ren41!

I too have PA and Hashimoto's. Fun mixture isn't it???? I found out I had Hashimoto's October 2016. After several othe docs told me I was fine just getting older I thankfully found one who took time with me listened and ran test for Hashimoto's and also vitamin deficiency. I was low on iron, D and B12. After 3 months supplementation for B12 it was even lower. That is when we test for PA and was positive. It has been one slow step at a time figuring it all out. You are right a lot of the symptoms overlap. I have started HCI usually one with each meal. Think it helps. I can sure feel the difference when I don't take it. A lot of gas and bloating! Also taking Mega sporebiotic probiotic. System still not right but slowly making improvements. Trying to eat paleo Whole Foods. Hashimoto's numbers down by half. I know all the supplements are expensive. I will do some research on the lime juice. I am in US. Good luck.

ren41 profile image
ren41 in reply to Cwilli

Thanks fbirder, that's a good link. I just bought the Waitrose Sicilian lemon juice someone mentioned elsewhere; I think I'll have a go at the lemon or lime before taking the HCI (not HCL, sorry!) tablets.

I was diagnosed with PA in 1992, 5 years after I fell and broke my wrist quite badly. It took a long time (and my own GP going on holiday) to be sent for the correct blood test for the initial diagnosis. Every time I went to see my own doctor she just gave me more iron tablets. By the time I was diagnosed my blood count and b12 level were both very low indeed, and I have been left with long-term peripheral neuropathy. I wouldn't be surprised if the Hashi's didn't start up at much the same time but I was diagnosed with that in 2002. Apart from anything else, for me it exacerbates the neuropathy and adds in cramps and muscle weakness. I am on a 3-weekly injection of Cynaocomalamin and a combined thyroxine/liothyronine regime for the Hashi's. I have had to fight to stay on the T3, but if it is reduced then I'm not good for anything!

I knew, of course, that I'd have little or no HCI but I hadn't realised that the intermittent acid reflux, bloating, wind and general 'risiness' were as a result of it. I can't wait to try out the acid replacement although I must admit to being a bit nervous.

Deedle88 profile image
Deedle88

I have some experience with HCl. I have hypothyroid with Hashimoto's. It's best to take HCL during your midday meal, unless you eat early dinners. If you eat too late and take HCl you will most likely have acid reflex. Make sure that you only take HCl if you have a good amount of protein with your meal it can be vegetable protein, but you must have close to a full portion of protein with your meal. You only start with one pill and assess how you did with that digestion. If things were fine and you had no reflux symptoms, acid issues or stomach burning symptoms, the next time you take it try two pills. Then assess how that went if you had no symptoms with that then you can do three pills. You continue doing that with each meal that contains a serving of protein, until you run into symptoms. When you run into symptoms, then go back to the last highest dose that you had no symptoms with. For instance, If u end up having symptoms with three pills then stop that dose and go back to two pills. You continue to add an extra pill with each meal with protein until you feel symptoms. Then that's the dose they say you'll need for your body's needs for proper digestion. After being on a regular dose for a while you will probably be able to stop taking it, as long as you have a low acidic diet and you have been on a Low acidic diet for awhile. Probably not best to take it late at night.

ren41 profile image
ren41

Hello Deedle

thank you for the information. I don't think I would usually have enough protein in my lunch; it tends to just be a slice of bread with hard-boiled egg or cheese (cheddar, sliced thinly), and a yoghurt.

I'd have to do some analysis to work out if my diet was acidic or not!

Foggyme profile image
FoggymeAdministrator in reply to ren41

Hi ren41. Just a comment about the HCI (Betaine Hydrochloride)...this should not be taken if you have active gastritis or any sort of gastric/duodenal ulcers. It would be like pouring acid on an open wound...and it may prevent ulcers from healing.

Also- those taking prednisilone (or any form of steroids) or long-term NSAID's (like ibuprofen) should not take HCI and it should be avoided if diagnosed with any form of kidney disease.

It may also increase cholesterol and shouldn't be taken if using cholesterol lowering medications (one will cancel out the other).

Also - may cause nausea, diahorrea, or gastric problems...though this may ease once the body adjusts to it.

Think be tempted to try the lemon or lime juice first to see if that makes a difference (it did for me 😉).

Good luck.

👍

ren41 profile image
ren41

Hello Foggyme - yes, I will try the lemon juice first although none of the above applies to me, but I am fairly cautious about that sort of thing anyway.

thank you - would be nice not to be so burpy all the time. I've never taken any antacids but I do take Windsetlers sometimes; I think they are Cimetedine but as far as I know its only role is to bind the wind together so it's easier to burp - a la gripe mixture.

Foggyme profile image
FoggymeAdministrator in reply to ren41

Hi ren41. Windsettlers is the brand name for an anti-foaming agent called Simeticone, which is used to alleviate 'wind' (and colic in children). It can cause nausea and constipation and it can reduce the absorption of thyroid medications. Here’s information about it:

medicines.org.uk/emc/PIL.26...

However, if you mean Cimetidine, that’s something very different. It’s a drug called an H2 receptor - these reduce the secretion of gastric acid and pepsin, so, if you're taking this, it will make your low stomach acid issues worse. It can also cause myalgia (muscle pain).

In addition, H2 receptors can impede the absorption of vitamin B12 and cause vitamin B12 deficiency.

Here’s more information about cimetidine:

medicines.org.uk/emc/medici...

This patient information leaflet states that secretion of intrinsic factor is reduced but that absorption of B12 is 'usually' adequate. Hmm...suspect not if you you have PA or B12 deficiency!

And H2 receptors are know to cause B12 deficiency - here’s information about H2receptors and vitamin B12 deficiency.

ncbi.nlm.nih.gov/pubmed/135...

So, Windsettlers probably okay unless you have thyroid issues (or side effects), but Cimetidine not so good for those low stomach acid and/or B12 issues.

Grief, this stuff is complicated isn't it 🤔😉.

ren41 profile image
ren41 in reply to Foggyme

hi Foggyme well obv i do have thyroid issues but don’t take it that often - i guess not enough to make any difference to thyroid as it can be a month or more between taking it, and none of the other side effects you nention. sometimes i get v bad pain under the ribs on the right side which is when i take it; i had a scan for gallstones quite a while back but there was nothing. there is no link to any particulatar type fof food or time of day and i think it is probably trapped wind and triggersd by stress. if i can relax (difficult if v bad ) it goes away. i’d have to try and remember where i’ve come across cimetidine, now i have to check out the mess it’s a component of!

Foggyme profile image
FoggymeAdministrator in reply to ren41

Cimetidine used to be prescription only - a long time ago - now it seems to appear OTC in many brand items - or even in its genetic form....so good luck with the hunt 🤔.

Just a thought...perhaps there’s an alternative you could try instead of the Windsettlers?

Good luck 👍

ren41 profile image
ren41

ah, that's right, Tagamet. I deal with some many similar-sounding meds (mostly beginning with C) that its easy to get confused. Not used by me, any of them - except, occasionally, Piriton, as I'm allergic to some insect bites. I don't think the Windsetlers are a problem; I might take 2 - 4 a month or less.

I had a tablespoon of lemon juice tonight with dinnner tonight. Possibly less bloated, no burning etc so will up it tomorrow. I'm glad any indigestion IS intermittent but makes it harder to assess if anything is working.

You may also like...

HCl Pills

Do most of us take HCl pills since our pareital cells that produce acid have been destroyed? I...

Medichecks Results Advice Please

recommend to take and when should I stop it for the retest? Can anyone advise what I should do in...

Advice on Tests Please

and B12 on the low side. I have been self supplementing with supplements and levels have raised but...

Blood Test Advice please

specific for pernicious anaemia (PPV of 95%) but have a low sensitivity (40-60%), the absence of...

B Complex advice please

folinic acid drops that I can titrate up and down easily. Most B complexes I have looked at also...