Gallstone Attack: Do other P.A./B12D... - Pernicious Anaemi...

Pernicious Anaemia Society

31,971 members23,121 posts

Gallstone Attack

Bassettbabe profile image
29 Replies

Do other P.A./B12D sufferers have gallstone problems? I have had them many years ago, but yesterday brought a whole new meaning to the word pain! After several excruciating hours I eventually fell asleep exhausted. Have felt weak and pathetic all day. I have braved half a banana and peppermint tea, but feel nervous to try to eat anything too solid right now. I SI hydroxycobalamin once a week and was beginning to feel so much stronger, so this is a bit of a set-back. Any thoughts?

Written by
Bassettbabe profile image
Bassettbabe
To view profiles and participate in discussions please or .
Read more about...
29 Replies
Narwhal10 profile image
Narwhal10

Hi Bassettbabe,

I am dreadfully sorry to hear you are in so much pain. I know gallstones are hideous. I’m afraid I have absolutely no knowledge but sending sympathy.

Gambit62 profile image
Gambit62Administrator

I think gallstones can be produced when there are problems with the gallbladder which is where bile is stored. It is close to the ileum so surgery can affect the ileum and it can also impact on B12 absorption.Not heard that PA puts you more at risk of gallstones

Marz profile image
Marz

There can be a connection between low thyroid and gall bladder issues due to lowered metabolism. Have you had the correct thyroid tests ? TSH - FT4 - FT3 and anti-bodies TPO & Tg.

I have Hashimotos and had gall bladder issues/removal long before the thyroid diagnosis ....

Many of us thyroid sufferers also have B12 issues so we post here and on Thyroid UK

Bassettbabe profile image
Bassettbabe in reply to Marz

Thank you Mars,

I can’t tell you how many times I have been tested for thyroid issues and each time they come back negative, but yes, I have always suspected an underlying thyroid problem.

Marz profile image
Marz in reply to Bassettbabe

Do you have copies of your Thyroid test results ? You can ask for copies or enrol to view on-line. In my experience ( 11 years on TUK ) the NHS very rarely do the correct testing - detailed above - and test only the TSH which is a Pituitary hormone - nothing about the performance of your thyroid.

Are you able to have Private Testing ? Ordering and results on-line from Medichecks ....

thyroiduk.org

Bassettbabe profile image
Bassettbabe in reply to Marz

Unfortunately, I haven’t been able to access any blood results through the NHS. Since the pandemic our GP is never available to talk to and admin staff vague and unhelpful when asked for online access. I will certainly think of private blood tests in future. Thank you for your response and advice.

Marz profile image
Marz in reply to Bassettbabe

You are legally entitled to have copies of all test results. May I suggest you ring the surgery and ask for copies from the last 2 years and say you will pop in and collect them after 3/5 days. You do not have to give a reason - if pressed say they are for your own records. Am sure they do not want to be breaking the law.

Medichecks have Special Offers on Thursdays 🌻 We have to monitor our own health more and more in the absence of good GP support. Having copies of results tells us more about what has not been tested !

Bassettbabe profile image
Bassettbabe

Thank you Narwhal10 and Gambit62, I did consult dr Google and there was a brief mention of a link to P.A., but could find no details.

After years of looking like Olive Oyls skinnier sister, six months of B12 therapy, I have put on 7lbs. This is mainly due to suddenly being able to smell and taste food. My sense of smell altered several years ago which made certain things smell rancid or like they were decomposing. I could smell undertones of things in an exaggerated way I.e., pop corn sapped the oxygen out of the air, the smell of wet dog overwhelming and common household cleaning items made my face and lips tingle and burn just by being in the same proximity.

I can now enjoy food and though do not feel I am especially overweight, some of my food choices may be a bit rich for my compromised digestion. Trial and error as the saying goes.

Cherylclaire profile image
CherylclaireForum Support in reply to Bassettbabe

Strange you mentioned altered sense of smell.When at my worst, a local supermarket became a "no-go" area for me as the minute the doors opened, all I could smell was raw sewage.

(why do we say that I wonder ? As opposed to what - baked ? fried ? )

I now believe it was my brain misinterpreting the smell of perhaps cabbage or cauliflower.

Bassettbabe profile image
Bassettbabe in reply to Cherylclaire

Yes Cheryclaire, I know exactly what you mean. There were times that I couldn’t walk past the butchers because I couldn’t bear the smell of rotting flesh. I think somewhere in the brain messages we’re getting scrambled. It seems to have improved since I started SI and I only have odd moments these days.

Cherylclaire profile image
CherylclaireForum Support in reply to Bassettbabe

Yes - the only discrepancy I really notice between me and others now - does every third person you pass reek of whackybaccy - or is that just me ? Or is that post-covid normality ?

Dilly_blue profile image
Dilly_blue

Hi BassettbabeI have gallbladder problems too (and also gastritis, which (for me) may or may not be autoimmune (I have antibodies to GP cells and ANA, and I am going for a blood test for IF antibodies next week). I have a functional B12 deficiency (diagnosed last year).

I am on the waiting list for surgery to remove my gall bladder (hopefully within the next 3 months or so).

I too have had a very painful couple of weeks in my upper abdominal area (very painful, not being able to do much after meals at all, it is completely wiping me out). A few days ago I decided to cut out coffee, fizzy drinks, spicy food, fatty food, and do smaller meals. And I also took omeprazole (but only for a few days, as it is not great in terms of absorbing B12). I have also been taking gaviscon. So it is feeling quite a bit better this morning (but not completely!) - but I’m not sure whether it was gallbladder, or gastritis, or both.

I think if your gallbladder has been ‘quiet’ for a long time, but you are now getting a lot of pain you should definitely go to your doctor to get it checked out as soon as you can (as the pain may or may not be the gallbladder, and if it is the gallbladder you can get v nasty complications in certain situations, so best to get it checked out).

I started developing gallstones a long time ago. I also have an autoimmune condition, plus muscle and connective tissue problems (which I am trying to get to the bottom of).

I think gallstones can also occasionally occur in conditions affecting your muscles (due to a reduced ‘squeezing’ action of the gall bladder). I have been trying to work out whether my muscle (or connective tissue) issues are related to my B12 deficiency. I suspect I have been deficient for decades, I was low B12 in 2010, and was prescribed a single B12 injection and no follow-up.

I saw a haematologist recently, who said that muscle problems can occur with B12 deficiency, but that in his experience, it was typically the very elderly patients (with B12 deficiency) who get muscle issues (in their 80s rather than their 50s!). So I am no nearer to the end of my quest yet!

Sorry for long reply, and I hope you start to feel much much better soon.. :)

Rexz profile image
Rexz

Hello Bassetbabe,Yes, I've had acid reflux, PA and diagnosed via Endoscopic Ultrasound and MRIs that I have "sludge" and gallstones in my gallbladder.

I took a look at your profile and with a diagnosed PA and acid reflux plus your are or were taking Omeprazole a Proton Pump Inhibitor or PPI and considering your age. My guess is that you have low (hypochlorhydria) to no (achlorhydria) stomach acid. Stomach acid drives so many functions in the digestive process not only from breaking down food in the gut but also sterilizing it. Then when ready and the acidity level is right around a PH of 2 it is what helps the pyloric sphincter to open and allow food into the small intestine. Once that happens the acid excites the I-cells in the walls of the small intestine to release a CCK (Cholecystokinin) hormone. That hormone is the messenger that causes the gallbladder to contract and thus squirting its contents into the bile duct and further into the small intestine. So with low to no stomach acid that process does not work correctly and if the gallbladder does not contract the stored bile just sits there and turn to sludge and gallstones. I liken this to old gas or fuel that sits in the tank of your car for too long it will turn into sludge or gel...no good. On another note immediately after my upper GI endoscopy I too was prescribed, incorrectly, Omeprazole for my Gastritis and acid reflux. I think that GI doctors when they see acid reflux and gastritis they presume it is too much acid that is causing it. In the case of PA that is not the case and low stomach acid is a primary cause of acid reflux as the acidity levels take longer to reach the 2.0ph the few parietal cells that you have remaining, at the top of your stomach in the Fundus, are pumping away as hard as they can and that acid is raining down and sitting right on top of your food and not moving...a great place for it to reflux up into the esophagus. Also most older people have low stomach acid anyway. PPIs are one of the most overprescribed drugs. Since I've ditched my Omeprazole and started taking Betaine HCL and digestive enzymes acid reflux and most of my digestive problems have resolved, including the occasional trip to emergency due to food poisoning.

Although they wanted to remove my gallbladder I refused and still have it....a personal decision. Plus I love my stone collection so much I take it wherever I go! 🤣

This is the other part of living with and managing PA that has little to do with B12 injections.

Here is a link to Pubmed regarding CCK

pubmed.ncbi.nlm.nih.gov/907...

Hope this helps, apologize again for writing a book! Rex

Bassettbabe profile image
Bassettbabe in reply to Rexz

This is really helpful info, thank you Rexz. I am one of those a*al people who needs to understand why something is happening to be able to deal with it. I will try the digestive enzymes. I was prescribed Omeprazole and gaviscom some years ago, but haven’t continued with either.

Rexz profile image
Rexz in reply to Bassettbabe

Yes, and it's the a*al that helped me save my own life and I am sure its the same for many others on this forum...so keep at it.

Dilly_blue profile image
Dilly_blue in reply to Rexz

That’s really fascinating, Rex - I will look into that further.. It’s good that all is going well for you re: gastric issues.. I don’t have the confidence to refuse the gallbladder removal operation - unfortunately the surgeon told me that (due to my BMI) the prognosis (if I got complications from the gallstones) would be really poor.. I have been trying to lose weight, but it goes off then comes back - I’m really struggling with it..

Rexz profile image
Rexz in reply to Dilly_blue

Dilly_blue, Yeah that's a tough call as a plugged bile duct can be serious and dangerous. But listen closely to your doctors when they tell you that you definitely need to have it out and its the 3rd most common procedure so is safe but at the same time they'll say there are millions of people living with gallstones and they may never know it. One thing I've learned though is to not ask a Gallbladder surgeon the question "should you have your gallbladder removed?" of course they will answer yes because that's what they do. Is like asking a used car salesman should you buy that used car. Just arm yourself with as much information as you can and get three different opinions. Contrary to what they will tell you there are complications that result from having your gallbladder removed. I will find and send you the complications that 40% of people experience after gallbladder removal. I took that to my surgeon and put it in front of him and he had no real answers for me. So, I sort of opted to be one of the millions of people with stones in my gallbladder since I am of the opinion that we were provided it for a reason.

Dilly_blue profile image
Dilly_blue in reply to Rexz

Thanks Rex - yes, I’d really appreciate any info you can send, thank you. The conversation with the surgeon didn’t really go that way - I wasn’t given a choice as such, just told I need to have it removed, due to prognosis. I have a lot of stones (I think my gallbladder is like a bag of marbles..!), and a stone was first spotted (on a scan for something else) when I was 23 - so I moved beyond the ‘sludge’ stage decades ago, unfortunately.. I will definitely look into it, thanks again

Patriciamt profile image
Patriciamt in reply to Rexz

Hi I've got gallstones discovered after ultrasound when I had a severe bout of bad pain. Since then I have less pain/ache more or less on daily basis but I can cope with that. But i have now had two episodes of vomiting and diarrhea 6 weeks apart. (The second episode was yesterday).I don’t want my gallbladder removed but does this sound like I need to?

Rexz profile image
Rexz in reply to Patriciamt

Well... first I must reiterate I am no doctor. But what I've learned over these past 3 years is that the human body is fabulously complex and its a miracle really that we exist at all.

I can really not answer your question "do you need to have it removed?" directly. In some cases they do need to come out. A blocked bile duct or common bile duct can be very dangerous.

All I can do is offer your information that you should take to your GP and have a discussion. Then take to another GP and have a second independent discussion.

You probably already know this but your gallbladder is located in the upper right side of your abdomen just under the lowest ripe rib. Unless you are an alien then it could be in your ear or a toe or somewhere else : ) sorry I had to throw some humor into this very serious subject. So if you have intense pain that lasts several hours and does not go away and it is located in that spot that is gallstone attack pain. It can also radiate to your back. If your pain is inconsistent or is in locations other than that is may be caused by other issues (having a different etiology). This can be quite common especially with those afflicted with Pernicious Anemia which causes all sorts of digestive issues oh and yes pain, and nausea, and vomiting, and diarrhea. Those also sound like the way you've described your symptoms. Your pain possibly could be caused by Low stomach acid (hypochloridria) as the same cells that produce Intrinsic Factor also produce stomach acid (hydrochloric acid). So in the reference below he talks about a link between Hypochloridria and gallbladder disease.

sciencedirect.com/topics/me...

"Hypochlorhydria is common in patients with gallbladder disease occurring in 52% of 50 patients with gallstones in one study (Bell, 1979). While there is no evidence that hypochlorhydria contributes to the pathogenesis of gallstones, it may be responsible in part for some of the nonspecific symptoms associated with chronic cholecystitis, such as belching, bloating, abdominal pain, and nausea. In hypochlorhydric patients, hydrochloric acid-replacement therapy with meals may relieve these symptoms. Hydrochloric acid is usually administered as betaine hydrochloride. The dosage of betaine hydrochloride recommended for hypochlorhydric patients varies among different practitioners from 600 mg per meal to 3000 mg or more per meal (von Bergmann et al., 1987)."

Here is a short YouTube that explains low stomach acid.:

youtube.com/watch?v=OxZBvKr...

a link to "What does it feel like to have a bad gallbladder":

emedicinehealth.com/what_do...

And I found this study rather interesting in that even after a Laparoscopic Cholecystectomy (LC) 40% of patients have the same symptoms you are mentioning. Could that possibly be that those symptoms were being caused by something other than the gallstones? something like low stomach acid contributing to IBS or SIBO. BTW have you been tested for stomach acid and SIBO? Here's a link to that study:

Etiologies of Long-Term Postcholecystectomy Symptoms: A Systematic Review

hindawi.com/journals/grp/20...

Here are some excerpts:

"Although [Laparoscopic cholecystectomy] LC is the preferred treatment to relieve symptoms, previous studies show that long-term abdominal symptoms are present in up to 40% of patients after LC [6–9]. This equals a yearly growth of 280,000 cases with abdominal symptoms after LC in the US. Patients suffer from symptoms like diarrhea, gas bloating, nausea, vomiting, jaundice, or abdominal pain.

4.2. Coexistent Diseases

Sixty-four studies reported coexistent diseases as the etiology for long-term persistent abdominal symptoms after LC. Eighteen studies provided the prevalence of coexistent diseases after LC ranging from 1% to 65%. Coexistent diseases in patients with gallstones are common and mainly nonbiliary: gastroesophageal reflux, peptic ulcer, hiatus hernia, gastritis, constipation, IBS, Anterior Cutaneous Nerve Entrapment Syndrome (ACNES), fatty liver disease, chronic obstructive pulmonary disease, or coronary artery disease [27, 28]. Preoperative distinction between symptoms caused by coexistent diseases and gallstones is challenging [29–32]. Misinterpretation of symptoms and suboptimal indication for LC will result in persistent symptoms after surgery [8, 9, 27, 30–36]. Even if the indication for LC was made correctly and the biliary symptoms are resolved, symptoms of a coexistent disease can become more prominent and considered as persistent symptoms after LC [29, 37].

Although LC is the preferred treatment to relieve symptoms, previous studies show that long-term abdominal symptoms are present in up to 40% of patients after LC [6–9]. This equals a yearly growth of 280,000 cases with abdominal symptoms after LC in the US. Patients suffer from symptoms like diarrhea, gas bloating, nausea, vomiting, jaundice, or abdominal pain."

As I've said before I had all the symptoms you had the nausea, the vomiting, the abdominal pain, I would cycle between constipation and diarrhea and several times had an ambulance ride to emergency due to what they said was food poisonings. And boy did they want to remove my gallbladder but all was eventually resolved once I was tested for stomach acid and they found it was PH of 6 meaning I had no stomach acid. I started taking Betaine HCI and digestive enzymes and all is good now. Oh yes, I love my stone collection so much I happily take it with me where ever I go!

I am not sure I've helped you as all I can offer is educate yourself, gather the information, and have a discussion with at least two different GPs at different unrelated hospitals.

Wishing you the best, Rex

Patriciamt profile image
Patriciamt in reply to Rexz

Thank you very much for the information Rex. A lot to get my head around but I don’t want surgery if it can be avoided. I will explore the acid avenue first as I have in the past been put on Omeprazole for an extended period and i think that may have had a long term negative effect on my acid production.

Rexz profile image
Rexz in reply to Patriciamt

Yep, uneducated doctors think that if they see an inflamed lining of your stomach (gastritis) it is caused by too much stomach acid and they prescribe a PPI. That very thing happened to me I was prescribed Omeprazole of which I took only one capsule. Many doctors don't seem to know that Pernicious Anemia and its associated gastritis is an autoimmune caused inflammation or autoimmune metaplastic atrophic gastritis (AMAG). So yes, its a lot to get ones head around and I've found most GI doctors are expert in performing Endoscopies. That's what they do because that is where the money is. I prefer to call them endoscopic technicians rather than doctors. Don't get me wrong, there is a need for those but what we need is a GI doctors "MIND". For them to understand the GI function and how it works in the most infinitesimal detail. Good luck finding one of those...

Patriciamt profile image
Patriciamt in reply to Rexz

Thanks again RexzI was vomiting blood which is why they put me on the Omeprazole. When I had been on it a while I re-read the leaflet which said you should only take them for 2 weeks or so? When I mentioned it to the doctor she said her husband had been on it for 6 years! Thats why I continued- until I knew better. Thanks again for responding.

Bassettbabe profile image
Bassettbabe

Thank you Dilly-blue,

Sounds like we are kindred-spirits. I have also been dealing with many health issues for decades and especially muscle related pain and weakness. A blanket diagnosis of Fibromyalgia was given about 20 years ago, which was poorly treated and which I never really believed. I am sorry that you are still feeling unwell and hope you get some resolution soon.

Dilly_blue profile image
Dilly_blue in reply to Bassettbabe

Thank you so much. I hope you do too.

I have not yet been diagnosed with fibromyalgia, but I expect that they will end up doing that at some point, when they can’t work out what is happening..

Marz profile image
Marz in reply to Bassettbabe

Fibro is another condition that can be linked to LOW thyroid - especially T3 which is very rarely tested in the NHS. I was diagnosed with Fibro by a Rheumatologist in 2000 and with Auto-immune Thyroid in 2005. Lots of info on-line ....

Bassettbabe profile image
Bassettbabe in reply to Marz

Thanks for all the great advice Marz, good to have words of wisdom from those who have been through it.

LynneG profile image
LynneG

Functional doctors, clinicians always take steps backwards to find the root cause of an issue .

Bile , which is the cause of gallstones in the gallbladder is not an issue with the gall bladder but the liver. The liver makes the bile and it is also recycled as such a crucial product for life. So I would suggest supporting the liver and also drink lots of water, just plain water (not out of plastic bottles ) to help create less sludgy bile

See Ann Louise Gittleman's work on the liver and Bile production xx

Bassettbabe profile image
Bassettbabe in reply to LynneG

Thank you LynneG,

This is very helpful. I will do more research on all things Liver.

You may also like...

Low b12, gallstones and bilirubin

pains and he thought this could be due to gallstones. I have read a lot of links recently between...

Gastritis attacks and PA

last a few days and I’ll have to take pepcid (anti acid medicine). It feels like a hole is burned...

Help is this normal to feel dreed of heart attack

I have been diagnosed with vitamin b12 deficiency and i am convinced i am going to have a heart...

Silent Heart Attack

if you have this type of damage then and I do not mean to cause panic but if you were to have a...

Help. Methylcobalamin

I have a nine month old and I have responsibilities. What could have happened. Will I ever feel...