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Advice please so confused

Paula1710 profile image
26 Replies

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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26 Replies
Nackapan profile image
Nackapan

9 stone weight loss?MMA test

I F AB test. 50 % not picked up who do havd PA .

Folate level

Iron level

Ferritin

Vit D

Thyroid

Magnesium

Get tested for Addisons disease?

List 5 worst symptoms

Paula1710 profile image
Paula1710 in reply toNackapan

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

Magnesium 0.9

5 worst symptoms

Low BP

Tachycardia

Hairloss

Digestive issues

Headaches

Paula1710 profile image
Paula1710 in reply toPaula1710

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.

Nackapan profile image
Nackapan in reply toPaula1710

Ask for more tests. Mma may not be done as b12 was low.

Thinking agsin as used to diagnose functional b12.

Addisons

POTS

Ehlers Danlos ( huge spectrum)

Get tests

Any spinal mri needed??

Have you seen a neurologist .?

So many symptoms overlap.

A process of elimination .

The low b12 maybe caused by the ppi' s alone so b12 levels could improve now they have stopped.

You may be able to absorb b12 ??

Chicken and egg ??

I mentioned the above as my daughter went through a barage of tests to get the correct treatment

Sounds like you are going through this process and getting alot of blood tests.

Meanwhile good you having b12 injections.

Hope they are helping you.

I had all of your worst 5 snd more.

Even if nothing else found it takes time to heal from a b12 deficiency whatever the cause.

Your bloods do look thorough and 'in range'

Just keep getting tested to eliminate to try and find out what's going on.

Give the 5.

worst symptoms to your doctor

Hope you get some answers

.

Paula1710 profile image
Paula1710 in reply toNackapan

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 .

Can a GP do MMA as he says he's not heard of it?

Could still be PA as symptoms all fit

Nackapan profile image
Nackapan in reply toPaula1710

Hospital trst MMa .Doesn't seem like you need that as explained.

Specialists offer it if needed.

Ehlers Danlos can be diagnosed by a neurologist or general medical consultant. Gastroenterologists are usually involved as gadtro symptoms present.

Cardiologist??

Seems lije you've had alot of tests and seen many specialists

Like you say . Coukd all be b12 deficiency symptoms.

PPI's stopping absorbtion of b12 so may not be PA .

Only response to treatment with b12 and time will tell.

Paula1710 profile image
Paula1710 in reply toNackapan

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.

EiCa profile image
EiCa in reply toPaula1710

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.

Paula1710 profile image
Paula1710 in reply toEiCa

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

EiCa profile image
EiCa in reply toPaula1710

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.

Paula1710 profile image
Paula1710 in reply toEiCa

If mine is normal then I guess the injections are working Awe wish you well too

EiCa profile image
EiCa in reply toPaula1710

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!

Paula1710 profile image
Paula1710 in reply toEiCa

My homosteine was tested after I had the injections.Does this still mean the B12 injections are working?

EiCa profile image
EiCa in reply toPaula1710

Paula,

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)

Paula1710 profile image
Paula1710 in reply toEiCa

Awe thanks for the info

EiCa profile image
EiCa in reply toPaula1710

You're welcome. I wish you the best in finding a competent doctor....a rare find these days.

Cherylclaire profile image
CherylclaireForum Support in reply toEiCa

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.

Technoid profile image
Technoid

"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. "

gut.bmj.com/content/65/Supp...

Paula1710 profile image
Paula1710 in reply toTechnoid

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

Technoid profile image
Technoid in reply toPaula1710

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.

Paula1710 profile image
Paula1710 in reply toTechnoid

I know absolutely agree.

Parlay profile image
Parlay

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.

Sleepybunny profile image
Sleepybunny

Hi,

"Just been to see Gastro who stated PPIs can't affect the absorption of vitamins"

I think your Gastro needs to do a bit more homework.

Articles about B12 deficiency and PPI drugs

This NHS article says

"For example, proton pump inhibitors (PPIs), a medicine sometimes used to treat indigestion, can make a vitamin B12 deficiency worse.

PPIs inhibit the production of stomach acid, which is needed to release vitamin B12 from the food you eat."

nhs.uk/conditions/vitamin-b...

NICE CKS B12 deficiency and Folate deficiency says

"Other causes of vitamin B12 deficiency are rare, but include:

Drugs — colchicine, metformin, nitrous oxide, protein pump inhibitors, H2-receptor antagonists. "

cks.nice.org.uk/topics/anae...

Should also be some useful quotes in

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

NHS link about omeprazole says

" Taking omeprazole for more than a year may increase your chances of certain side effects, including:

bone fractures

gut infections

vitamin B12 deficiency – symptoms include feeling very tired, a sore and red tongue, mouth ulcers and pins and needles"

nhs.uk/medicines/omeprazole...

Other articles about PPIs and B12 deficiency

pulsetoday.co.uk/news/clini...

Sleepybunny profile image
Sleepybunny in reply toSleepybunny

Thread on Patient Safety, has lots of useful links for those who've had difficult health experiences

healthunlocked.com/pasoc/po...

"Should I insist on a referral to a haematologist"

NICE CKS guidance - when to refer B12 deficient patient to neurologist/haematologist/gastro-enterologist

cks.nice.org.uk/topics/anae...

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.

Some of the info will be specific to UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I'm not medically trained.

Tigerlilly81 profile image
Tigerlilly81

When they tested your parietal cell antibody test did they do the ELISA test?

Paula1710 profile image
Paula1710 in reply toTigerlilly81

No idea it was done at the hospital

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