Anyone care to diagnose

[Bowwowjangles]

Just for fun really as back at Drs again on Friday.

We are trying to work out why I keep getting a sharp, gnawing pain in my left side, plus almost like attacks of gas. Belching and smelly wind.
I've had an ultrasound which came back all clear and bloods.
Bloods showed low ferritin - 6 and vitamin d (We now have raised them a little with meds) but what also comes up is high mch and mcv and low rbs.

I admit I am quite worried about my bloods as mum has leukaemia and Google says it's not good to have raised mch and mcv.

I've had a stool test for hypolori which was negative and been tested negative for Crohn's. I am currently trying a low fodmap diet but it's early days and I don't know if it will work.
The pain can be intense, an 8/9 on pain scale. Sometimes I can pinpoint the exact location other times it can radiate to the kidney area/back. I am currently taking alverine citrine, magravol for constipation and have also tried Colfac.
Thanks for any advice

Have you had your ovaries checked? Could be an ovarian cyst from the location of the pain you're describing.

No I think coeliac disease can cause either diarrhea or constipation.

@strax luckily I didn't stay on. I didn't have any heartburn at the time so didn't really see the point.

@strax thanks for the explanation. I think they have only checked b12 once which would help compare

@SingingGoldfish yes they did a pelvic ultrasound and found a small simple cyst on left ovary. I think the pain is higher than ovary

Vitamin B12 deficiency - and therefore macrocytic anaemia - is reasonably common in chronic pancreatitis. When you ingest B12 it binds to a protein in saliva called haptocorrin. This allows it to pass through the stomach without being destroyed by the acid. However, the B12-haptocorrin complex can't be absorbed. Vitamin B12 can only be absorbed in the small intestine when it's bound to a different protein - secreted from the stomach - called intrinsic factor (IF). The B12 has to be cleaved from the haptocorrin by pancreatic protease enzymes before it can bind to the IF. So a lack of secretion of digestive enzymes from the pancreas will result in low levels of B12 in the blood.

Pernicious anaemia is an autoimmune condition where your immune system mounts a reaction against your own IF (or the cells in the stomach that secrete it). This is a common cause of B12 deficiency but it wouldn't seem to account for some of your other symptoms. It will be interesting to hear what the doctor thinks.

@Ragusa I didn't know that, thank you I think it needs revisiting

Coeliac can cause both so it doesn't rule that out. Have you kept a full food diary to see if there's a pattern ?

My sons "gluten" poos float and smell sweet and sickly (he's coeliac)

@skiitan thank you. I've just looked at the symptoms. I don't have pale stools or unexplained weightloss or vomiting. Really hoping it's not that as sounds scary

@notapizzaeater thank you. No I haven't. I've been trying to follow fodmap on gp's advice and was going to ask for referral to a dietician as a bit lost.

I would say it seems like not an ulcer but an acute gastritis. You've nearly exactly described my symptoms when I had it. The only way they'd diagnose it though is via endoscopy.

I do hope they get to the bottom of it soon! Good luck

This is definitely pointing towards a Vit B12 deficiency despite your results. Unfortunately, a number of GPs don't appreciate that the standard Vit B12 test doesn't forcibly rule out a deficiency if the issue is absorption (which is often the case). You might want to show the page below to your GP
www.nhs.uk/conditions/vitamin-b12-or-folate-deficiency-anaemia/diagnosis/

I have been poorly for over 2 years with various syptoms and finally came across Vit B12 and asked to be tested. The results came back normal but my mch was high at almost 34.8. My GP had to google to see what could be the cause of it and because I don't drink totally disregarded it as 'one of those things' and said that I wasn't anaemic because my hemoglobin levels were normal.

In the end, I decided to start injecting Vit B12 myself and I am finally starting to feel better. I could feel that I was anaemic, having been so in the past because of low iron level. It was especially evident to me as I exercised. I do a lot of running and cycling and am quite fit, but I found myself totally drained after only 10-15 minutes into my routine and in the end had to give it up. I've just started again slowly but what a difference already!

I am also starting to feel like I'm regaining a little bit of normal mojo. Before, the fatigue was so intense, I just felt like I was living with a constant hangover!

I have informed my GP (another one I also see) that I'd started to self inject and he's ok with it. He wants me to stop completely for 4 months to do more testing, but I just can't face it when I'm finally stating to feel a bit more like my old self.

Go on the Pernicious Anaemia website, they have tons of information (and highlight how most peoole go on for months or years before getting a diagnosis).

Skiiltan, I can't remember if you are a GP or consultant, but if you are a GP, it's nice to see that you understand the condition well. I've read that many GPs don't know about Vit B12 deficiencies because it's not really studied at Med School.

My GP is very knowledgeable in some areas and I do have respect of him, but I was quite amazed when he said himself that he wasn't sure what could cause a high mch and had to look it up and then refused to accept that it could be an indication of mycrocytic anaemia and said it was just 'one of those things'. At least we have interesting discussions!

Good luck with your appointment today Bowwowjangles.

I was thinking gall stones too.
Do you have problems when you eat fatty foods?

Thank you for all your posts and suggestions. They have really helped as I let the Dr read them all.

She doesn't think pancreatitis as the Liver function was good and looked okay on ultrasound but thinks we should now refer to Gastro. She agrees that I'm showing as megoblastic anaemic and this needs looking into so have just had bloods for Coeliac and B12. I highly doubt the coeliac will come back though as I've been following low fodmap which does take some gluten out of the diet. She said as long as I've had gluten in the 8 weeks prior to bloods should be okay. She agrees also Pernicious Anaemia needs looking at. She actually said she was sorry this was missed but was concerned at the low ferritin last time.

That sounds really positive bowwow, hopefully you will start to get some answers now.

swingofthings - I'm not a medical practitioner. I'm an academic who teaches medical students. We do quite a bit with our second-year students on vitamin deficiencies (which they're okay with) and the whole range of types of anaemia (which they absolutely detest). And loads on autoimmunity.

Thanks @strax really hope so. Just wished I'd looked into it all sooner. It was only because I got online access to bloods, but it does seem I've been misdiagnosed, just hope no real damage has been done.

What I don't get is that if they put mch and mcv to high levels of alcohol if my liver function shows normal surely that would have flagged something? I can understand one Dr missing but 4 drs!!

Sorry to leap on but @Skiiltan with your background, maybe you can answer a question I have about B12? Excess B12 is stored in the liver, and an adult should have several years worth of B12 stored, right?
When the B12 is secreted back out from the liver, how does that happen? Does it go into the bloodstream or back into the digestive system or something else? If it goes back into the digestive system, I would assume a person with absorption problems still can't make use of that B12 as it still can't be absorbed? Is that right?

Strax - To continue the life story of cobalamin (vitamin B12)...

The B12-IF complex binds to specific receptors on the surface of the cells lining the lowest section of the small intestine (terminal ileum). The cells then pinch off and engulf the bits of their surface that have the B12-IF bound, so it gets taken into the inside of the cells: a process called endocytosis. The B12 then dissociates from the IF and binds to yet another protein called transcobalamin II. The B12-transcobalamin II complexes bind to the inner surface of the opposite side of the cell and undergo exocytosis, i.e. the reverse of endocytosis: they get transported out of the cell and into the fluid around the cells, from which they get into the blood and transported to the liver. (Blood from the gastro-intestinal tract all goes directly to the liver before it goes anywhere else in the body. The liver is the place where toxins and all kinds of "foreign" chemicals are neutralized.)

In the liver, transcobalamin II facilitates the uptake of B12 into liver cells (hepatocytes). But there is generally already loads of B12 stored there. The liver, kidneys & bone marrow between them hold about 5 milligrams of B12; the recommended daily dietary intake is 2 micrograms (i.e. you have 2,500 times as much stored as you would consume in a day). Any excess B12 in the liver gets excreted in the bile into the first section of the small intestine (duodenum) but much of it then gets reabsorbed in the ileum in a process called enterohepatic recirculation, so the amount lost in the faeces will be much lower than the amount expelled from the liver in the bile. Someone who is unable to absorb B12 from the diet - e.g. someone with pernicious anaemia - will equally be unable to reabsorb it from bile.

There is an equilibrium between the concentration of B12 in the liver and the concentration in the blood. When the blood concentration falls, B12 (still complexed with transcobalamin II) will pass from the hepatocytes into the blood. I'm afraid I can't find any details of the involvement of transport proteins in this. Certain tissues have receptors for the B12-transcobalmin II complexes and can therefore pull B12 out of the blood. Most significant are the kidneys, which will excrete some B12 in the urine, and bone marrow cells that use B12 in the synthesis of proteins to produce new blood cells. These transport processes are generally two-way, so B12 can also pass back from other tissues (e.g. muscle, bone, heart, spleen, pancreas) to the liver as needed. Details are hazy but this might involve yet another transport protein called transcobalamin III.

Sorry this is so complicated. That's life, scientifically speaking.

No that's brilliant, thank you. I am in a pernicious anaemia support group and one reasoning often given to sufferers behind only having 3 monthly injections (which most find hopelessly inadequate) is that excess is stored in the liver and is available to you. As you say, this wouldn't be the case with a PA sufferer and I wonder why GPs so often think it is. I don't have the energy to argue with my GP any more, it's too soul destroying!

Strax - Looking at the British National Formulary (BNF), the recommended dosing for hydroxocobalamin is 1 mg three times a week for 2 weeks then 1 mg every 3 months. I assume this is based on filling up the stores initially and then replenishing them at intervals, as it will take quite a long time for the stores to become depleted. As I don't work with patients I have no idea how realistic this is. However, it would be difficult for a GP to follow a different dosing schedule to the one in the BNF: she/he would really have to refer you to a specialist for this.

Interestingly, where there is neurological involvement (i.e. the pernicious anaemia is associated with nerve damage) the guidance is a bit more flexible: 1 mg every other day until no further improvement then 1 mg every 2 months.

This is great news Bowwow, it's nice that your GP took the time to listen to you and indeed recognise the issue.

If it is like me, you won't believe how much better you'll feel after treatment. I've been feeling dreadful for 2 years now and I'd forgotten what it was like to be normal and not ruled by exhaustion.

Skiiltan, very interesting indeed. I have really enjoyed researching it all myself. There were so many elements that came to the conclusion of B12 deficiency even a balance test that I failed during an ENT appointment, which I read is a common outcome of B12 deficiency.

Interestingly, where there is neurological involvement (i.e. the pernicious anaemia is associated with nerve damage) the guidance is a bit more flexible: 1 mg every other day until no further improvement then 1 mg every 2 months.
Indeed as I'm just finding out. I started with the loading dose in January started to feel better but then crashed again about 1 week after my last dose. I've now decided to follow the advice on the PA forum and continue until there was no improvement. I'm on week 3 of every other day injections and I can't believe how better I feel. My tinnitus is much reduced, and it's amazing not to feel dizzy and lightheaded all the time. Pins and needles are gone, it's incredible that such a vitamin can make such a difference.

Yes, the treatment guidelines are not based on any clinical evidence though - it's one of the things the pernicious anaemia society has been questioning them on. It appears the guidance used to be something like weekly which was dropped to monthly which was further dropped to three monthly - no one knows why.
There was a research study being set up by the PA society and they asked for members who did well on 3 monthly jabs to sign up - they only found around 4 people. The vast vast majority of sufferers feel they need jabs much more frequently than they can get them. Anyway, will stop derailing, it's a bugbear/passion of mine of course, as it affects my life!

Strax, I totally understand. It doesn't seem to make any sense that if it is indeed the case that you can't overdose on B12 and that there is such a case of starting injections immediately regardless of blood results when there is neurological manifestation, that patients should then be left to suffer again because they should wait 3 months for further injections.

Patients suffering from the symptoms of B12 deficiency know how debilitating it is, so it makes no sense to wait to take something that can only make us feel much better, unless doing so would be dangerous.