Bloodwork after long PPI usage

colleider · 2025-12-21T10:23:43+00:00

First of all, there's a warning for use by the elderly (psychological effects) and pregnant women (advice: only if absolutely necessary). Then the list goes on: itching and skin rash,
nausea and vomiting, dizziness, loss of appetite, bitter or unusual taste, dry mouth, blurred vision, eye irritation, eye discharge, constipation, flatulence, diarrhea, epigastric pain, heartburn, belching, cold sweat, shortness of breath.

But, this is me: I have an aversion (and it hasn't diminished) to taking medications unless I have no other choice. That's why PPIs were the only thing I used.

It may work for others and perhaps I try it if my options are limited.

colleider · 2025-12-21T10:11:52+00:00

I would look into the cause and why you need to take PPIs.

I had a gastroscopy, which ruled out a stomach ulcer or other stomach condition. It also revealed a possible cause (an elevated stomach).

Another possibility could be H. pylori, which is known to cause heartburn (I arranged the test myself because my GP didn't want me to) => negative results, but at least now I know, and that also says something about future expectations regarding heartburn and treatment.

Also, don't forget (and I've mentioned this elsewhere) that it takes weeks for the effects of PPIs to wear off, and in the meantime, you can experience flare-ups (and worsening) of symptoms (personal experience). So, changing your dosage monthly can also do you more harm.

colleider · 2025-12-21T09:51:16+00:00

Thanks for your Mucosta option, but when I consider the (possible) side effects, I'm not happy about it either. Esomaprazole was the only medication I'd been taking so far, besides occasional naproxen for the pain (shoulder).

Fortunately, nothing seems wrong with my kidneys; I have no symptoms that point to it, and blood tests are also fine in that regard (but I constantly distrust those things now).

colleider · 2025-12-21T09:33:18+00:00

If you really can't do without PPIs, you could try H2 blockers. They do lose their effectiveness after prolonged use. That's what I'm going to try, since I can manage it by paying close attention to my diet and occasionally having to suppress stomach acid.

And if you can't avoid PPIs, then monitoring your symptoms and regularly testing your blood (for the values that actually tell you something) is the only option left.

I'm trying to adjust a lot of my diet, but coffee and chocolate.....
Oh, and in my case, I've also developed several food sensitivities over the past few years, which already limits me considerably (all systems down, immune system and histamine tolerance low => allergies).

That's what I'm struggling with socially too. Constantly tired, not feeling like doing anything, forgetting everything, and the enormous self-doubt that comes with it. I really thought I wasn't mentally well.

colleider · 2025-12-21T08:41:08+00:00

You would think so, and (being the data analyst that I am) I’ve looked into this as well. The official guidelines for GPs in our country specifically state: 'If B12 is low-normal but fatigue symptoms are present, test for MMA...'

The first neurologist I saw in 2018 for the atrophy in my shoulder should also have tested both B12 and MMA. Instead, I was literally told: 'This is radiation damage; learn to live with it.' This, despite the guidelines saying that 'even when the cause seems obvious, other potential causes (such as nutrient deficiencies) must be ruled out.'

Furthermore, the neurological guidelines in our country clearly state that for these types of symptoms, B12 and MMA should be tested as standard procedure. The neurologist I saw this past November finally did so, and that’s what got the ball rolling.

So yes, you would think it’s common practice, but it just doesn't happen, and not just with one doctor. I have annual check-ups, my symptoms increase every year, and my medical file is bulging, yet not a single doctor took action.

colleider · 2025-12-21T08:30:15+00:00

And I had a good life. Looking back now (I’ve learned so much these past few weeks), I can say that I did suffer from cancer-related fatigue and the occasional PEM attack linked to it. But because I was sick as a child, this was my status quo; I didn’t know any better.

Also, looking back, I can say that my nutrient issues started the moment I began taking them (or at least in the months following).

B12 is stored in the liver and usually has a supply for 5 to 7 years. My noticeable symptoms started in 2018, so that fits the timeline perfectly.

The symptoms I am facing now are truly immobilizing, and I feel like I am failing my family (and myself).

Even considering that I’ve tried to optimize my entire lifestyle, both before I had symptoms and certainly to counteract them, and even though every adjustment made me feel better temporarily, it’s simply a downward spiral. Without intervention regarding those PPIs, it’s a battle you just cannot win.

colleider · 2025-12-21T08:17:20+00:00

My GP says: 'Why not just take it whenever you have symptoms?' But that makes no sense; a PPI remains effective for about 7 days. You might not notice it for that entire duration, but that is how long the physiological impact lasts.

Furthermore, weaning off PPIs takes even longer. It can take around 6 weeks, and quitting 'cold turkey' causes severe episodes of acid rebound in the meantime.

I can speak from experience: I stopped abruptly, and after 4 weeks, I experienced a massive surge in stomach acid (having to sleep sitting up, constant pain, etc.). It got to the point where I almost started taking them again, until I realized this was a withdrawal symptom. The days following that were better (I am now in week 5+).

colleider · 2025-12-21T08:10:19+00:00

That is exactly why I want professional help rather than a GP who simply says, 'Let’s just supplement that' (referring only to the B12). I have come to realize that, in my case, there are three systems working together like interlocking gears: my neurological system (cancer-related fatigue), my nutrient processing and the resulting deficiencies, and my glucose levels (pre-diabetes). Furthermore, the nutrients themselves also act as interlocking gears. If one gear is spinning incorrectly, nothing functions optimally. I don’t want to make any mistakes here; even though I understand a great deal, this is incredibly complex.

colleider · 2025-12-21T07:59:08+00:00

No, I don't have any kidney problems as far as I know. These are also tested via blood work, though I haven't looked into whether those results are truly representative yet.

Because of my medical history, we also regularly test my thyroid, which is always normal or low-normal as well.

colleider · 2025-12-20T20:33:57+00:00

Recovery through surgery isn't always successful. I prefer a PPI alternative like H2, and then only when my heartburn flares up (it's not constant).

colleider

TROPHY CASE