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

@swingofthings thank you. I think I've felt poorly for so long I don't know what normal feels like. I've always put it down to the ME and it was just something I had to accept.
If it wasn't for this pain I wouldn't have questioned it. It's quite exciting that there is something that might make me feel better and I don't just have to put up with it.

Please don't worry about derailing. I'm finding it all so fascinating and hopefully the thread can help others too.

I've been reading about b12 and that you can't overdose so also wonder why they have stringent guidelines?

The guidelines are linked to the licensing of the drug with the regulatory authorities (principally the MHRA in the UK). Hydroxocobalamin's licence is for 2-3-monthly use. To change this would require an additional licensing application based on extensive safety data. If a doctor prescribes a drug outside its licensing terms - e.g. for a different condition, at a different dose or by a different route (e.g. the intravenous form of vitamin K is given orally to patients who have taken a warfarin overdose) - she/he does so at her/his own risk, as the manufacturer is not legally responsible for unlicensed use of the product. An experienced haematologist will probably be prepared to do this if she/he considers it to be in the patient's best interest. It's a different matter for a GP to do it.

Thanks Skiiltan for that explanation of the 'behind the scenes' which helps to explain what doesn't make any sense to the unknowing lay person.

Indeed, I've come across this same issue with the non licensing of melatonin for children, not for my children, but with the issue that GPs are refusing to prescribe and therefore referring to community paediatricians, which result in a waste of fine resources.

It explains why GPs are reluctant but doesn't explain why it's licensed in that way in the first place. I've had a gp quite happily allow monthly injections but then a while later another gp stopped them. It's such a lottery. Also they won't generally refer you to a haematologist so it'd be impossible to get around it that way. I've been going round in circles about this for a while! I, like many other sufferers, now order my own and inject myself.

Thanks for explanation @Skiitan.
I explained to Mum that you could self inject - her response 'well you'd better not start that.'
My son was prescribed his Melatonin through CAMHS.

Ahhh b12 has come back normal at 268. So where does that leave me now? On the plus the gastro letter has come through

Is it true that you have inactive b12 and the test is flawed as tests for it all?

@Skiitan @Stax @swingofthings any ideas?

Well, firstly 268 isn't very high, some countries have 500 as the bottom end of their range.
Secondly, yes you're right there's a difference between active and inactive B12. It's not very common to be able to get an active B12 test on the nhs, but you can have it done privately easily enough with a pinprick test kit if you wanted to. (Medichecks or thriva are a couple of places that do this)
It's much more accurate than the standard B12 test. On Skiiltan's explanation of the process upthread, the active B12 part is where the B12 is bound to the transcobalamin.

Thanks @Strax. Will the GP recognise the private test if it came back that some of the b12 was inactive? Or will I have to privately treat? I'm hoping the Gastro might be more clued up.

I guess one issue is that if all vit B12 tests were done using the new test, which only measures transcobalamin- and haptocorrin-bound B12, the normal range would be shifted downwards as everyone's measurements would be lower. This doesn't mean it isn't valuable, particularly if people with a deficiency have a disporportionate decrease in active rather than inactive forms.

I found a NICE review that concluded that the active B12 test is potentially more accurate, so it's possible that things will move in this direction. Obviously, this would mean giving both values for quite some time to allow current measurements to be compare directly to ones measured previously.

Good point Skiitan. It's all just gobble degook to me I'm afraid.
I don't help myself really as clearly food seems to set it off but I'm not strict, eat it and then I'm in pain. I need to keep a strict diary really. Maybe gastro will refer to dietician and that will help too.

Skiiltan, the active B12 test is a completely different test though so it would only affect the range of active B12 tests, I don't understand why that may be a problem?
Bowwow in my experience, GPS will not take as read the results of a private test but can usually be persuaded to repeat them if you have out of range results.

Thanks Strax the active test or same as before? What I don't get is that higher mcv and mch is already and indication low b12.deficiency so surely if they say it's normal it's not?

High MCV is indicative of macrocytic anaemia, which could be caused by liver disease, hypothyroidism, alcoholism or glucose-6-phosphate dehydrogenase deficiency. Add in the high MCH and you're more probably looking at megaloblastic anaemia, which could result from deficiency of folic acid (vitamin B9) or cobalamin (B12). Dietary deficiency of vitamin B12 is very rare, while deficiency of folic acid is quite common in countries - like the UK - where bread flour isn't fortified. It's only when intrinsic factor gets destroyed or B12 can't be cleaved from haptocorrin, and the absorption is consequently suppressed, that lack of B12 comes into consideration.

Thanks Skiitan I wonder why she hasn't tested my folate too?

Look up Splenic flexure syndrome. It’s where the pain is that you describe. It’s where gas gets trapped in that area and is usually worse after eating. Do some research on it

B12 and folate are usually measured in the same test.

I don't have any personal experience of the active test, I was 'lucky' in that when I was found to have macrocytic anaemia my B12 level was so low (

Is it true that you have inactive b12 and the test is flawed as tests for it all?
Mine came out as 442 so initially, my GP wouldn't contemplate that this was the issue at all. It's only after I've shown him the evidence that this doesn't consider an absorption issue that he has accepted that it could still be a problem.

Your folate should have been tested too. Mine was also normal. What really made me believe that b12 was a problem was the combination of my symptoms with the very high MCH result which are much more telling than the standard b12 test.

Thanks Dodie66 they have said about gas/air pocket in intestine as said that was exact spot I'm pointing too - however it now radiates down my back and leg. I was reading though it says pain only last minutes and this is definitely not the case. It lasts hours.
Last night I stupidly had a salad with feta cheese and some chorizo. Also had balsamic on. I was in agony so either the chorizo and feta or the balsamic and an uĺcer maybe.

Just thought I would update.

Total Iga has come back elevated at 3 not really sure yet what this means but I'm seeing gastro on 19th. I think from what the nurse said they test for antibodies and only if positive they then screen for coeliac. Can anyone tell me if that's correct?

Does anybody know when they do the coeliac test does it come back in stages?
I've had the total iga but nothing else.