I was on longterm PPI for 14 years.In 2016 I had course of antibiotics for a sinus infection. A few days later I couldn't walk in straight line,terrible headaches,burning sensation in skin.Thought I was going to collapse.My GP ordered blood tests and my B12 was 50!!! I had 6 loading injections then 1 injection every 3 months.
Fast forward to last year.quoted NICE guidance at my GP and got my injection every 2 months.
Came off my PPI in December iron,folate and zinc keep dropping now am supplementing all 3.
Just been to see Gastro who stated PPIs can't affect the absorption of vitamins and the leading cause for vitamin depletion is Perniciius Anaemia.GP wants to withdraw my B12 injections due to me stopping the PPI.
Last year developed sinus tachycardia low BP and hairloss.Dermatology told me hairloss was due to low vitamins and it will regrow.They put tachycardia down to Anxiety and low BP down to my 9 stone unintentional weightloss.
Intrinsic factor negative on several occasions,homocysteine and Parietal cell normal.FBC normal No anaemia
Going to see my GP tomorrow any advice? Should I insist on a referral to a haematologist? Or will they not see me as all blood tests normal?
I have high cortisol levels so they are putting alot down to stress?
Is it PA or not that is the question ????
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Paula1710
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Who does the MMA test GP said they don't do it.If I'm having B12 injections will that not skew results?Folate over 20,vit D 72 ferritin 55 iron level 20.4 transferrin 2.25 %iron saturation 36%
Throid TSH 3.1 range 0 27-4.20 Tsh 4 14.3 range 12-22.Had 4 raised 9am cortisol 2 random during the day normal 24 hour urine cortisol normal.SST test normal discharged by Endo
9 stone weightloss from April last year to date.Cancer ruled out had 3x head cts,colonoscopy 2 upper endoscopies 2 abdo/pelvis ct scans I chest ct,mammogram and ultrasound more small bowel,echocardiogram,24 hour and 7 day heart monitor and 24 bp monitor.Autoimmune blood tests all negative tumor markers negative no coeliac disease.
POTS excluded by cardiologist not much variation in BP from sitting to standing.What kind of doctor diagnoses Ehlers Danlos?
Saw Neurologist privately he said could be FND brought on by stress.
Had MRI no subacute degeneration of the spine.
Got symptoms of Addisons but got high cortisol not low.No symptoms of Cushings at all other than raised cortisol.Endo said adrenals fine .CT showed normal appearance .
Been on B12 injections since 2016.Not been right since.Symptoms aren't severe.Due injection tomorrow going to see if symptoms subside.Think I will ask GP to get advice from haematology
Gastro useless just had to complain to PALS cancelled appointments seeing different consultants all with different opinions
Gastro told me today PPIs don't stop the absorption of vitamins.Its well documented it does.
I'm waiting for a neurologists appointment so I will mention it when I eventually see them
Saw a cardiologist due to tachycardia and bp suddenly went low after the weightloss. The only thing was found was trace mitral valve regurgitation very rare ectopics and svt. Sinus tachycardia and low BP diagnosed.no cause found.They said probably underlying condition causing it but don't know what.They sent me back to my gp to figure it out.
An MMA test will definitely be skewed if you are supplementing B12. Mine was way high (before any supps) but approached near normal after just 2 injections. It was my high MMA that got my doctors’ attention and got me treatment. My B12 was about 112 at the time.
I know that's the problem.Gastro said would have to stop B12 injections in order to do the tests for P OR Functional B12.Homocysteine and parietal cell both negative but on injections when done.Im not gonna stop the injections
Yep homocysteine was way elevated before treatment and is slowly but steadily nearing normal range. I wouldn’t stop treating though. It worked for me because I hadn’t been diagnosed yet and wasn’t treating. It was validating, though, to see that the injections were doing what they are supposed to do. I wish you well.
If your homocysteine is normal, the B12 is likely getting into your cells. I happen to have both MMA and homocysteine tested early on (on the advice of a doctor who participates on another forum like this!). He had been “following my case/posts” and privately emailed me to tell me to get these two tests. I credit a doctor I have never met, and likely never will meet for my diagnosis. There are some decent doctors out there; but definitely looking for a needle in a haystack!
I am not a doctor but my homocysteine was 2.5 times the top of the range. After 2 injections it was down from 25-15. As I said my B12 had been 112. The only thing that changed was 2 injections. Homocysteine is highly involved in the methylation cycle but I don’t understand at all. (No matter how hard I try). All I know is that B12injections=much lower homocysteine for me. So the B12 is “actively” doing something.
Clear as mud? Sorry. I just learned that lowering both was my objective and B12 did it. It hasn’t translated to improving symptoms yet though. Be glad your homocysteine is good. High homocysteine increases your risk of strokes/heart attacks. (Among other undesirable things)
MMA should rapidly drop into range once B12 replete, yes.
My MMA level was found to be raised, long after loading dose and into maintenance frequency (every 3 months) for B12 deficiency. The GP organised the test because she could see I was still deteriorating - it wasn't easy, she had been turned down by two labs, but the third one confirmed her suspicions and diagnosis of functional B12 deficiency; B12 not getting through to cell/tissue level.
Raised MMA can also indicate renal problems or SIBO - both of which can be ruled out, the first with bood test, the second with fasting breath test series. (SIBO will cause B12 deficiency as the bacteria rob you of vitamins.)
My B12 injections were then increased to 2 a week. Despite this, MMA (monitored by haematology) did not alter, then dropped comfortably within range on my sixth test - taken by DNA specialists. It took about three years.
"Gastro who stated PPIs can't affect the absorption of vitamins"
See a different Gastro. This person has not the first clue.
Relevant BMJ paper extract:
"Proton pump inhibitors (PPIs) have long been established as an effective evidence based therapy for many upper gastrointestinal diseases including peptic ulcer disease, gastro-oesophageal reflux disease, oesophagitis and dyspepsia. However, nonjudicious use of PPIs creates both preventable financial as well as medical concerns. There are several studies that point to potential micronutrient deficiencies including iron, vitamin B12, magnesium and calcium as a consequence of long-term PPI use. While these risks are considered to be relatively low in the general population, they may be notable in elderly and malnourished patients on PPIs. Although high quality evidence for the true burden of deficiency is scarce, clinicians should have an awareness of the potential for these side effects in patients, particularly those on long-term PPIs. "
I know couldn't believe he said that.He sent me a letter stating no evidence of fatty liver then showed me a ct scan abd pointed it out.Fuming I've complained to PALS in writing.Askinv my GP to refer me somewhere else
He sounds pretty incompetent. I'm not by any stretch of the imagination a gastroenterologist, in fact I have zero medical training, so its a bit strange that 10 seconds on Google shows that he's clearly wrong about an area he's supposed to be somewhat of a specialist in. I would look for someone with a third brain cell at least.
just throw another possibility out there. Guillian barré often can come after a virus. Some people it’s obvious and they have horrific symptoms some a lot milder. You stated you couldn’t walk post antibiotics? Also replacing your gut micro biome post antibiotics could help, I hope you find answers.
From personal experience, seeing a specialist is no guarantee of better treatment.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
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