stopped ppi!: Hi all After reading and discussing... - Thyroid UK

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stopped ppi!

Natj123 profile image
51 Replies

Hi all

After reading and discussing this issue with many people I have stopped my lansoprazol!!! Taken since 2008

My main reason for stopping them was my daughter had a stomach bug and I was under the impression that taking these makes you more prone to catching it as they suppress your own stomach acid& good gut bacteria??

Anyway I don't feel too bad without them taking a strong probiotic!!!

Going to buy some of the betain hcl with pepsin, to help!!

On another note I've stopped my measly dose of 25 mcg levo and am now taking apx 40 mg t3 and I'm not feeling as fatigued lately!!!

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Natj123 profile image
Natj123
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shaws profile image
shawsAdministrator

Hi, I think you've to gradually reduce PPIs - I don't know if you can stop them 'cold turkey'.

Beverleyb profile image
Beverleyb in reply to shaws

Hi shaws, I went for a Gastroscopy yesterday, I was told to stop taking PPIs two weeks before procedure. I didn't think that was right to just stop taking them. I have been taking ppi for years, I have a sliding Hiatus Hernia, (found that out about 5 years ago) yesterday I was told I have inflammation in my stomach also. In my report they gave me it said carry on with ppi meds. They are not helping at all, and now reading about the negative affects ppi have , I am at a loss. I will get round to reading all the links on here about ppi. Do you know if they interfere with thyroid meds please?

Many Thanks Bev.

shaws profile image
shawsAdministrator in reply to Beverleyb

You've to leave 4 hours between levo and PPIs.

Try the Betaine/Pepsin regime as you suggest and at least that will ensure your stomach can digest food.

"I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions"

Beverleyb profile image
Beverleyb in reply to shaws

Thank you Shaws. I am going to read up on the PPIs as much as I can, and try the Betaine/ Pepsin.

shaws profile image
shawsAdministrator

These are a couple of links:-

refluxmd.com/connect/physic...

peoplespharmacy.com/2013/10...

Natj123 profile image
Natj123 in reply to shaws

Well I've not taken for a week!! No adverse effects!!!

humanbean profile image
humanbean

I agree 25mcg levo is a measly dose. But 40mcg T3 is a huge leap in dose - it is the equivalent of about 120 mcg - 160mcg levo (depends on how much stronger you think T3 is than T4.) If you have any adrenal issues there is a chance that your health might go into a very rapid nose dive.

Do be careful, and don't be in a hurry to take more. Your body needs time to adjust to what you are currently taking.

Natj123 profile image
Natj123 in reply to humanbean

Sorry I should have added I've been taking the t3 for a while now, and haven't raised it for a few weeks! But thank you

humanbean profile image
humanbean in reply to Natj123

Glad it is helping so much. :)

Natj123 profile image
Natj123

Hi ellismay sorry that you have this problem, I just stopped, I reduced from 30 mg to 15 mg, for a week or 10 days then I stopped, I wouldn't have done it so quickly if my daughter had not have had a stomach virus!! I probably would have stayed on reduced dose, for a week more, then probably started taking one every other day?

Unlike you I don't take medication that causes stomach problems so you may be in a different position to me? :-(

greygoose profile image
greygoose in reply to Natj123

I did the same thing last year. Just stopped. I've no idea why I was prescribed them, anyway. I think they were just trying to pump me full of as many drugs as possible. I just stopped the lot. Cold turkey. Didn't feel any worse - in fact, I felt ten times better!

Natj123 profile image
Natj123 in reply to greygoose

Good!!! I was given them suspected ulcer!!!

Do help with acid but I'm trying it!!!

Hoping once I get the betain hcl it will help a bit, it's bearable but feels a little burny on times x

greygoose profile image
greygoose in reply to Natj123

Well, I've never had any problems with acid of any sort - neither high not low. But it's probably low because I had a lot of nutritional deficiencies - which the PPI didn't do anything to help! Horrible things!

Natj123 profile image
Natj123 in reply to greygoose

Yes!!! Why are they allowed to just dish out rubbish to us!!!

greygoose profile image
greygoose in reply to Natj123

Because that's how Big Pharma makes its money. It figures we won't know what we're taking, and if the doctor prescribes it, we'll just take it without question. The doctors Don't know any better, they believe all that the sales reps tell them.

Fruitandnutcase profile image
Fruitandnutcase

I stopped recently too. I've been on omeprazole 2x200mcg a day (which I think was quite a lot )since about January this year.

I just stopped taking it one morning and just didn't start again although a couple of tea I took the odd one later in the day if I had heartburn / reflux but I've not had one for quite a while so I consider myself to have gven them up.

I've also started steroids and hydroxychloroquine for RA, I take two tablets for BP, one of which I blamed for the reflux but maybe it isn't that after all because I'm still taking it and the reflux / heartburn has gone.

Around the te I stopped I also went totally GF which meant I stopped eating snacks like cakes and biscuits, and I gave up my beloved chocolate and Diet Coke altogether, I tend just to drink water these days, plus decaf tea or coffee although I have had the odd glass of prosecco with no ill effect. It must be something that they put Coke that does it for me. I think it is most likely to be the dietary changes that have done it.

Good luck with giving up 😊

Natj123 profile image
Natj123 in reply to Fruitandnutcase

Sounds good!!! Thank you!

Tea triggers reflux with me!!! 😁 hope your good x

Natj123 profile image
Natj123 in reply to Fruitandnutcase

Also realised that's an immense amount of omeperazol!! I was taking 60 mg lansoprazol and my doctor said that was was too much ( when I was pregnant)

Fruitandnutcase profile image
Fruitandnutcase in reply to Natj123

I know, I knew for the leaflet that you took different amounts for different conditions then recently someone my husband works with was telling me about how I'll his wife had been with something similar and that her consultant had put her on an 'enormous' amount and I mentioned how much I was supposed to be taking. The guy did a double take and said 200mcg - how often? You mean, 400mcg every day! At that point I began to wonder then I read the leaflets yet again and thought it was text wean myself off.

Sounds like it is worth starting giving up on the things that you know for sure trigger the reflux then see from there, there are probably a couple of things and it could well be something you take regularly. Plus, as I said if I found myself getting heartburn later in the day I just took one then and gradually that stopped too. Just take it kind carefully and hopefully you will get there. 😀

Natj123 profile image
Natj123 in reply to Fruitandnutcase

Yes at first I thought it was a typo error as 20 mg is normal dose!

Yes acidulous foods trigger, vinegar, bbq sauce, that kind of thing!!

LindaC profile image
LindaC

PPI's - Noooooo! Please read the links below because the ones chosen are not meant to alarm; there are worse than these. When I used to get heartburn/reflux, I tried various things to relieve, all of them only worsen the situation: I was given PPIs once [for 14 days in conjunction with a large antibiotic regime] and I then read up on them.

Proton pump inhibitors (PPIs): Known by trade names including Nexium and Prilosec, these popular meds tame heartburn and serious reflux by reducing stomach acid production, making the situation worse. Unfortunately, they also deplete magnesium levels in the blood and impair absorption of calcium and vitamin D. This boosts the risk of bone fracture, irregular heartbeat and high blood pressure.

gov.uk/drug-safety-update/p...

health.harvard.edu/digestiv...

After reading several articles, next time suffering with heartburn/reflux I squeezed half a lemon into water... drank it [obviously] and the heartburn went in about 15 mins. I used to get really bad, choking reflux, so it was never a mild case of. No more problems since then, just squeeze the lemon... try it, this can't hurt. If it doesn't work, you've lost nothing.

But then I read about too little acid being the problem and realised that this was my issue:

Now I take Betaine HCI with Pepsin twice a day to ADD acid back in because too little in there can produce the same effect as too much. Age lessens our acid production, which is desperately needed.

scdlifestyle.com/2013/10/4-...

Your need for PPIs may be very different to that of the standard run of the mill over prescribed use of these [like many drugs today], so you will need to assess your own condition with your doctor... BUT do seriously question why you are taking them.

Natj123 profile image
Natj123 in reply to LindaC

Thank you!!!

I've bought some betain too! Yesterday!! Would never have come off them without info from this site!!! Also wanted to give myself the best chance of dodging the stomach bug that my kids had!! Knew that ppi stopping acid production made you more prone to catching it!!

Fruitandnutcase profile image
Fruitandnutcase in reply to LindaC

I agree, we should definitely be questioning why we are taking them, at the time it was just such a relief to get rid of the pain then I looked at the leaflet in the box and wondered why I was I them for the long term, then I decided that it was ridiculous to be taking a huge dose without ever finding out why I needed them - I mean they come in blister packs of seven for the week - I was taking twice that! Then I decided I couldn't spend the rest of my life taking something like that and had to tackle the source of the problem. I figured it had to be something I was putting into my body and worked from there.

I think it is typical of the overworked and overcrowded nhs that you are given something like that for a 'quick fix' rather than time being taken to find out why they are having to give it to you in the first place. Unfortunately from speaking to friends it is quite common practise, a patient has a reaction to one of their medicines and next thing they have PPIs tatie with the offending med. The trouble is that with the best will in the world ten minute consultations aren't really long enough and even if your doctor was willing, there isn't the time to 'fine tune' every patient who walks through the door.

CarolineC57 profile image
CarolineC57

That's a coincidence. I'm trying to come off them too. Posted here about it yesterday:

healthunlocked.com/thyroidu...

Not doing very well so far though - had horrible rebound reflux and nearly gave up yesterday. Today I took a lansoprazole again. I'm going to take one on alternate days and see how that goes as I can't split the tablet and I daren't ask my doc for 15mg tabs. I'm trying to substitute slippery elm eventually instead of the PPIs.

Natj123 profile image
Natj123 in reply to CarolineC57

Have you tried the betain hcl with pepsin? Fab reviews! Hope you get some joy, I'm not doing too bad without them!! Still have some heartburn but I'll live with that xx

CarolineC57 profile image
CarolineC57 in reply to Natj123

I just ordered some HCl/pepsin today! I was also reading up last night on low vs. high acid - it could well be low acid which has been causing my problems. Going to give the HCl/pepsin a try in case.

Today, I haven't been too bad with just the slippery elm and no lansoprazole - might try the same again tomorrow.

Glad you're doing well. :-)

Natj123 profile image
Natj123 in reply to CarolineC57

Let me know how you go with the betain!!! Good luck xx

LindaC profile image
LindaC in reply to Natj123

Yes, it has to have pepsin. Try the 1/2 squeezed lemon in water in the meanwhile.

Natj123 profile image
Natj123 in reply to LindaC

Funny thing I used to drink lemon water as it has lots of benefits but it gave me cystitis... Ouch !!!

LindaC profile image
LindaC in reply to Natj123

Lemon juice is touted as a natural remedy for cystitis? Alternatively, buy some frozen cranberries [getting close to Christmas, so fresh even ones] and boil them up - totally unsweetened - to soften, keep in airtight container in fridge and have proper cranberry juice also for cystitis in between drinking lemon juice :-)

Natj123 profile image
Natj123 in reply to LindaC

Yes I'm very unfortunate, orange squash also burns me awful, but I actually don't mind a bit of cranberry juice 😄😊thanks for your advice x

LindaC profile image
LindaC in reply to Natj123

Ah, this is just personal to me... not advice :-) Ordinary cranberry juice is NO USE AT ALL due to its high sugar content [orange juice pretty much the same in any event].

Some say cranberry might work for reflux?? I meant to take lemon juice for reflux and, if you get cystitis, use cranberry for that.

Natj123 profile image
Natj123 in reply to LindaC

Yes I'd gathered you meant that haha, just ate food with bbq sauce and my heartburn is terrible!!!

LindaC profile image
LindaC in reply to Natj123

Haha, simple things that make us laugh ;-) Speaking of heartburn, I used to enjoy alcohol [a bit]; used to get bad reflux sometimes in those days. A while back, not realising just how dreadful my whole system was, I met up with a bunch of people from years back... enjoyed a drink and couldn't properly metabolise it [really, not an excuse]... apparently I sat raucously laughing for 5+ mins with people asking a friend what was wrong with me. Laughing... wrong with, eh?

Of course, when I became 'OK again', they kind of expected me to be embarrassed... l just said, "Well at least I was laughing, not crying in my beer or aggressive. I never did get why someone would get all uncomfortable about what they'd done when drunk... I just say, "That's a part of me, if I've offended anyone then I'll wholeheartedly apologise but if not, that's me... if you don't like me, we don't have to meet again". People are usually fine and so am I :-)

Now watch that heartburn, take care :-)

Natj123 profile image
Natj123 in reply to LindaC

Ha ha!! I like happy merry people!!!

Sorry to change the subject quite rapidly but I've just posted another post regarding the betain hcl!!! Reading up on it and it said this 'Note: NSAIDs and Corticosteroids increase the chances of ulcers in the stomach and together with Betaine HCL increase the risk of gastritis. Consult a physician before trying this test or supplementing.'

I am disappointed!! What do you think about this? 😭

LindaC profile image
LindaC in reply to Natj123

Tee hee ;-)

Does that mean: taking NSAIDs and/or Corticosteroids and together WITH Betaine HCl increase the risk of gastritis?

It is difficult to say if this means taking Betaine with... that's how I'm reading it right now. I don't take either of the other two drugs... acid is acid. Whilst I can see a potential problem taking it with either of those two drugs [which I would avoid in any event, unless....] all I know is that taking acid has resolved my heartburn/reflux aspect of life, which was pretty bad. The alternative = PPIs are, for me, far worse.

This link above has informed me of a few things that I need to reconsider: here it is again for convenience.

scdlifestyle.com/2013/10/4-...

To answer your question: I really don't know and would definitely say take advice, yet doctors are dishing out PPIs which MAY be incredibly harmful. Apols but I have been trying to 'cobble together' my health for a good while now... its a strange old world when you go to medicine for help, then wind up being offered all manner of [quite harmful, some potentially lethal] drugs for everyday irritations, yet many of us are unable to obtain hormones from them for our thyroid which can render us SOOO ill. [I loathe self-medicating but could not type this if I didn't.]

Proceed with caution... read, read and read again. :-)

Natj123 profile image
Natj123 in reply to LindaC

Yes I think your right!!! I just panicked!!!

Oh and sorry for the late reply I've been stuck in bed with a sickness virus 😷 ugh xx

LindaC profile image
LindaC in reply to Natj123

Tell me about it [panicking about what to take/taking]... its our thyroids, you know that does this ;-) Hope you're feeling better very soon. xx

Natj123 profile image
Natj123 in reply to LindaC

Yes thank you thank goodness it was only 24 hours!!! 🙈

I was diagnosed with GERD last August after endoscopy and prescribed Lansaprazole which after taking made me really sick so I didnt take them again and started using liquorice or a little bicard in water when I got acid throat or heartburn. In the last week I have had another endoscopy due to a continuing throat issue and although I was told they couldnt see any problem I was again prescribed PPIs and have to go for a barium swallow which I am not looking forward to at all. I am not going to take the ppis as I rarely get acid reflux and know my throat problems are something else.

Natj123 profile image
Natj123 in reply to

Ahhh I was due a barium swallow last week!!! Couldn't go as my kids were unwel but my appointment now is in November and I'm nervous about this too!!!

Fruitandnutcase profile image
Fruitandnutcase in reply to

Have you been checked out for H. Pylori? That can cause reflux and was my doctors first thought when I was given the omeprazole. They send off a stool test, I tested negative so there was no real reason for the reflux.

Natj123 profile image
Natj123 in reply to Fruitandnutcase

Yes I've been treated for h pylori actually plus in undergoing further investigations as to why my stomach is very 'weak' x

Barrister profile image
Barrister

I have been taking PPI's for 15 years, first Omeprazole and now Esomeprazole (Nexium) 40mg daily and I will continue to take it. Taking it, I can live life not constantly feeling sick. I have a sliding hiatus hernia and if I stop taking the medication, I can feel it slide up into my chest where it is so uncomfortable that I am unable to swallow even water, let alone food. Clemmie

CarolineC57 profile image
CarolineC57 in reply to Barrister

I think if you have a hiatus hernia then you *do* need medication to control it so you're wise to stay on them. I think the gripes we have are with doctors who put us on PPIs when there's no apparent reason for our acid reflux. It can even be *low* acid which is causing the problem rather than high. Then, the PPIs can cause problems with malabsorbtion of vitamins, etc, giving us even more health problems. I think that's what's happened to me.

Glad the PPIs are controlling your symptoms due to the hh. You do need them for that as far as I'm aware.

Fruitandnutcase profile image
Fruitandnutcase in reply to CarolineC57

I totally agree Clemmie, if you have a real reason to take them then you definitely shouldn't even consider stopping taking PPIs. I didn't want to take them because I had been checked out and there was no obvious reason to be taking them, I was on a huge dose and had a 'no questions asked' repeat prescription for more, I also take a load of other medicines that I absolutely have to take and I was just fed up having to take so many pills.

Have to say the omeprazole really worked and the relief was amazing so I was glad to have them at the time. Thankfully modifying my diet has worked well for me, my doctor knows what I've done and is fine with my decision.

Natj123 profile image
Natj123 in reply to Barrister

Obviously some people really do need this medication, your obviously one of them,

And I do believe, at the time I was prescribed them they did help me, and when I mentioned to my gp that I'd like to try to stop them she encouraged this!

And I'm kind of glad I did, my next battle will be coming off my amitryptyline!!!!

Barrister profile image
Barrister

I've tried on numerous occasions to stop taking them but the HH slides back up and I feel dreadful so for me it's the lesser of two evils and I know that I'm lucky that they do control my problem. Obviously some people on here don't need to take them and if there is a viable alternative then that's great but for some of us this isn't the case. I hope the HCI/Pepsi works for you. Clemmie

Natj123 profile image
Natj123 in reply to Barrister

Yes totally agreed clemmie!!! Since finding this forum I've had my eyes opened widely, hoping to change a lot of unnecessary things in my life ha ha

Thanks clemmie

Natalie xx

helvella profile image
helvellaAdministratorThyroid UK

You might find this of some interest (I have posted it before, but not for months or years):

[Hiatus hernia and gastroesophageal reflux disease as a manifestation of a newly revealed hypothyroidism].

[Article in Russian]

Savina LV, Semenikhina TM, Korochanskaia NV, Klitinskaia IS, Iakovenko MS.

Abstract

The aim of the study was to reveal hypothyroidism (HT) in patients with hiatus hernia (HH), treated at Russian Centre of Functional Surgical Gastroenterology. The subjects were 64 women: 18--with HH and diffuse or diffuse nodular goiter, 36--with HH, and 10--without endocrine or somatic disease background. The examination included the evaluation of the thyroid and metabolic status, endoscopy, and 24-hour ph-metry. The results show that one of the early signs of HT is HH and gastroesophageal reflux disease. The latter in HT patients is associated with gastrointestinal motor-evacuatory disturbances rather than with acid exposition in the distal esophagus.

ncbi.nlm.nih.gov/pubmed/166...

҉ helvella ɐllǝʌlǝɥ ҉ helvella ɐllǝʌlǝɥ ҉ helvella ɐllǝʌlǝɥ ҉ helvella ɐllǝʌlǝɥ ҉

Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

Barrister profile image
Barrister in reply to helvella

Very interesting as my HH was diagnosed shortly before I was told that due to the results of some tests, I would likely become hypo some time in the future! At that time I had so many other things going on that I didn't think to ask for blood results etc. And after that I just lived with the fact that I was always tired and putting on weight. We live and learn! Clemmie

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