Gastroscopy and colonoscopy came back "normal". What now?

[jw44]

Some advice needed please...

Almost 2 years ago I was very symptomatic (brain fogs, tiredness, mouth ulcers etc), and had a B12 reading of 127 (range 180-900). I fought hard to get B12 injections. Tests for Intrinsic Factor and Parietal Cells came back negative and the Dr and haematologist have both dismissed it as just one spurious reading and nothing to worry about (B12 tests since then have always come back very high due to the B12 injections).

I have also been iron deficiency anemic, so pushed hard to get a referral to gastroenterology as everything seemed to point towards some sort of absorption issue. I had a colonoscopy and gastroscopy in August and they took loads of biopsies, the results have come back as normal - no signs of atrophy, coeliac or helicobacter.

So does this mean that there are no absorption issues?

Are the GP's right when they say the B12 and iron deficiencies aren't caused by anything and I don't need ongoing treatment?

If it was Pernicious Anaemia, would the camera work and biopsies have shown something?

I have a healthy diet, am not vegetarian and am otherwise fit and healthy.

Thanks for your help.

[clivealive Forum Support]

Hi jw44 do you know what your Folate level is as this is essential to process the B12 that appears to be swirling around in your blood.

I'm not medically qualified and hopefully there will be others on here who can address your issues,

I wish you well

[Gambit62 Administrator]

PA is one B12 absorption problem - there are others - which include drug interactions, surgery affecting the ileum, general lowering of stomach acidity as you get older and genetic abnormalities affecting the ileum.

Ruling out an absorption problem just on the basis of looking at one potential problem doesn't really make sense to me. If you have plenty of B12 in your diet then diet is an unlikely explanation - leaving absorption as the logical conclusion.

Drug interactions are a difficult one - as trying to prove it is the only factor is going to be tricky.

Not clear from your profile if you are still symptomatic - in which case folate may be an issue - or you may need B12 more frequently. The bio-chemistry of B12 is very complex and there really isn't a complete understanding of much of how B12 actually works at the cell level, which is what counts.

Out of interest - how high is 'very high' - my B12 levels are always off the top of the measurable scale.

I don't understand your GP's statement about deficiencies not being caused by anything and not needing treatment - there is always a cause - though the cause may be diet rather than something happening inside you - but I presume you have ruled that out. Both iron and B12 deficiency cause serious medical problems so both need treatment.

If dietary inadequacies were the cause and those have been corrected then no other medical intervention would be necessary. However, it can be a bit of a dodgy assumption that a B12 deficiency is dietary unless the evidence is overwhelming. Most people can store B12 in large quantities and release it in to the ileum for reabsorption as required - so need very little on a daily basis but if there is a problem with absorption in the ileum it's like a leaky bucket so you won't be able to replenish reserves and it will just be a matter of time before you are deficient again.

[jw44]

When I had the low B12 result, my folate level was 5.2 (range 3-20). Dr said it was fine, but I had read about needing adequate folate levels, so took folic acid supplements. For the last year or so my folate has been 12 or higher.

I fought hard to get the injections, and am currently on monthly B12 jabs (I struggled on 3 monthly and begged my Dr for more frequent injections - he agreed on the proviso we investigate further), but now every thing has come back "normal" he is keen to stop them as there isn't a "reason" for continuing. My recent bloods showed a B12 level >2000.

I would say I am still symptomatic - although its not clear whether this is due to the B12 or iron issues. My haemoglobin has fallen steadily over the past 6 months down to 11.2 (range 12-15), which isn't low enough for the Dr's to be worried, but seems to be low enough for me to feel exhausted, out of breath etc.

I take spatone and the GP gave me iron pills but I can't tolerate more than one pill every 3-4 days. As a result, my ferritin levels have risen from 13.4 to 25.9 (range 10-200) and transferrin saturation index from 16 to 26% (range 16-50) - which despite being at the lower end, the Dr's still class as normal.

I am only 37, have never had any surgery (other than a cesarean 3 years ago) and don't take any other medication, which rules out those causes.

Interesting you mention the low stomach acidity - how would this be checked? Would it have come up on the biopsies when they did the camera work?

[fbirder]

Folate - just inside the range - doctor says that's OK.

Hb - just outside the range - doctor says that's OK.

Can he spell inconsistent? Can he spell it again?

I asked my gastro if they could measure stomach acidity during a gastroscopy and he said 'no'. I'm going to guess it's because a gastroscopy has to be done when fasting - and the stomach won't secrete acid unless it has food in it.

I'll bet there's a remote capsule gadget that could do it. I'll also bet it's damned expensive.

[Laura5]

Did you get the pathology results from your biopsies? I was told there was nothing in my results which explained my symptoms but when I got hold of the actual report it had found h pylori. You can write to the hospital to ask for a copy.

[LDloveslattecoffe]

In 2016 (age 45) diagnosed with Vit D and folate deficiency. Folic Acid maintenance dose, Vit D high dose for 12 weeks then nothing then recheck put on a maintenance dose. I have PCOS and Asthma and aging but the deficiencies particularly D linked to PCOS.

In Feb 2020 my Hb was a little low but over the year symptoms worsened SOB, irregular heartbeats, ankle swelling, exhaustion, weight gain etc. In January this year asked for an early annual review and explained why (Just had 50th).

Now in Menopause last period August 2020 but had all hormones checked because of the PCOS and both an issue together.

Blood results came back that both Haemoglobin levels were low so GP did investigations - my Vit B12 in the normal range (this is something my Nanna had issues later in life, my folates fine but then they should be as take daily folic acid, thyroid, coeliac screening and diabetes check all ok. Likewise the Fit poo test was normal too.

GP checked Ferritin because of the Hb 108 and my Ferritin levels are 10 (which according to the range is complete absence of iron).

So now I am booked in 17/03/2021 for gastroscopy and colonoscopy. (The Sister I spoke to said even someone with heavy menstrual cycle with iron deficiency levels are around 15 and with me not having had a period since August even more important to check out)

I asked GP, if Coeliac comes back fine and camera investigations find nothing what else could be the cause and I was told the only other likely cause is Chronic condition anaemia i.e caused through the long term conditions of asthma and PCOS.

Will know more by mid/end March, at least I know the iron tablets would work I had them for 5 days and made a massive difference after 3 days - slept better, not woke up with headache and more energy but GP told me to stop taking because would interfere with investigations but can start them again after camera procedures done and dusted.