Anaemia and endless tests for the cause

[s7j7e7]

Has anyone else had to undergo five progressively invasive, separate tests for colo-rectal (bowel) cancer just because they have been diagnosed with anaemia? It will have been five months of investigations and worry before I get the final decision (fingers crossed for the all-clear but I can't help getting more and more frantic) after a barium x-ray, but as everything I've read says that Naproxen is a common cause of anaemia (and I've been on it for 2 years) then I'm not sure the sleepless nights and panic attacks are worth the investigation. What does anyone else think?

[fastball]

Fingers crossed it wont be much.

Best wishes and hugs

Chris

[s7j7e7 in reply to fastball]

Thanks for your kind words of encouragement, Chris.

[Hidden]

My hubby had colon cancer nearly three years ago, his was discovered due to him becoming very anaemic, and it was due to bleeding from the colon. However, on thinking about it, he had the blood test indicating anaemia, he was then fast tracked to a colorectal surgeon in 2 weeks. He then underwent a colonoscopy, endoscopy and CT scan. The tumour was then removed two weeks later and his op. Was called a right hemi-colectomy. He never had a barium x ray. I am pleased to say that after a very bad post op period he is now very well, eating a limited type of diet, and hanging on in there so to speak!! He is checked out every three months and has the dreaded colonoscopies twice per year, but is not too phased by them now,

I am not sure what your investigations are, but I think if there was any suspicions of cancer you would have dealt with very quickly, as I say my husband was having surgery less than four weeks after that first initial blood test showing severe anaemia.

Hope this helps you but if you want any further info pls ask me. Take care, Lynda xx

[s7j7e7 in reply to Hidden]

Thank you for taking the time to reply. I am hoping that it's taking so long because they don't think there's much risk, but until the final all-clear...

[Hidden in reply to s7j7e7]

Hoping you hear good news soon re. Your tests. Lynda x

[Hidden]

If I remember you suffer from PSORIATIC ARTHRITIS.

I went through a period of tests for rectal bleeding, this could have, been because of the medications I had taken at that time I was having problems with NSID medications, I am not a GP so I am unable to advise further you really need to converse with your GP.

The tests you have had are expensive and they must have a good idea why they are going down this pathway

BOB

[s7j7e7 in reply to Hidden]

Hi Bob, my GP says better safe than sorry and tells me the bar is set much lower now for referrals to follow up on anaemia, but it does seem a long time to investigate a possibility of something that's supposed to be picked up really quickly. So it's the mixed messages that are confusing me.

[Hidden in reply to s7j7e7]

Hello

Sadly that is how I feel.

[earthwitch]

I had endless blood tests and follow up and top ups of iron, folate and B12 many years ago for anaemia. It took a long time before the GP finally twigged to the possibility of a malabsorption problem, and tested me for coeliac disease. Test came back sky high, so was referred to gastroenterologist for biopsy and confirmation. Haven't looked back since starting the gluten free diet, and haven't had any problems with iron, folate or B12 deficiency since then.

FWIW, Coeliac disease is an incredibly common cause of anaemia, but is often the last thing that a GP (or even a specialist) will consider, especially if you haven't been complaining of bloating or belly ache. Ask your GP to do the blood test for coeliac disease before you end up having those invasive tests. If it does come back positive you will still need an endoscopy, but at least they will know what they are looking for then.

[s7j7e7 in reply to earthwitch]

Hi. I had an endoscopy which was all clear, and I'd agree that's one of the first tests to go for. Thanks. I'm glad to know you're having success on your gluten free diet.

[allanah]

Good luck, let us know what they say xxA

[s7j7e7 in reply to allanah]

Thanks Allanah. Hoping for a diagnosis (or all clear) next month.

[allanah in reply to s7j7e7]

Me too with mine, hope we get good news together xx

[oldtimer]

I can sympathise having been down that road too but with quite severe anaemia. Endoscopy in both directions and barium studies from top to bottom. Nothing found though. Eventually a bone marrow showed that the bone marrow had stopped working - high dose steroids and hurray, the haemoglobin crept up and up to the more normal level of anaemia of chronic RA.

[s7j7e7 in reply to oldtimer]

Thanks for the sympathy - this site is so good for people who can talk from direct experience - although we might sometimes wish we didn't have to! Did you have to wait long to get a bone marrow test, and are you still on steroids?

[oldtimer in reply to s7j7e7]

It took about 6 months for them to get around to the bone marrow test while I was "happily" occupied with other tests, including for malabsorption. Still on steroids, have been down to 2.5mg but each time problems have forced an increase. At present gradually reducing again.

[denvajade in reply to oldtimer]

Hi there can u please tell me why you had malabsorption? I am suffering from some very unusual stomach issues and cant eat fruit,meat or any sugar ????

[oldtimer in reply to denvajade]

Only having diarrhoea - side effect of the medication apparently, but no gluten sensitivity found on testing (which is what they were looking for).

[mistymeana]

Yep, recently as it happens. Currently having to OD on iron as levels are very low, despite a good varied diet. Had gastroscopy and colonoscopy to check nothing going on and luckily all clear.

[s7j7e7 in reply to mistymeana]

So glad to hear you're all clear. Fingers crossed I'll be the same when they finish the tests (CT next month, I think).

[Someonesmother]

I had anemia for ages and still borderline I did endoscopy, gastostropy and finally a pillcam and guess what nothing! they have no idea why I get anemia. I can't take iron supplements so I just live with it. I ahve also now developed high calcium levels and they can't figure that one out either, I am just bizarre! good luck hope they can actually firnd a cause for you and it is treatable

[s7j7e7 in reply to Someonesmother]

I wonder if the docs are too cautious in trying to find a cause for anaemia, no matter what. Glad to hear they couldn't find a bad reason for you, but sorry you have to live with it and the high calcium. I know about being bizarre, because I have proved intolerant of all RA meds so far (including expensive biologics and all the rest) except for Naproxen which just about keeps me going. And is my personal bet for the cause of the anaemia, but the docs "just want to be sure"...

[dtech in reply to s7j7e7]

I'm sorry, I've got to ask. Why s7j7e7? Is it some sort of Bletchley park type code?

[s7j7e7 in reply to dtech]

Ha, you've blown my cover! It is a bit like that: I'm signed up to so many different-interest groups and I choose a different ID for each one partly because I don't want Big Brother necessarily to be able to join all the dots. It's basically a variation on my name and favourite number. - Drat, that's given the game away!

[dtech in reply to s7j7e7]

Ah ha! And there's me trying to work it out with my enigma machine

[Someonesmother in reply to s7j7e7]

I have only just started on meds in Nov after taking nearly 2 years to be diagnosed. I won't take methotrexate after my sisters experience with it, had a rare allergic reaction to Arava and am now on plaquenil. They are talking about imuran when I go back in March. I have allergies to so many drugs they told me they are 'scared' to treat me. I live on panadol osteo as I can't take steroids or any NASAIDS, so I know what you mean about keeping going. Good luck and hope it all goes well.

[s7j7e7 in reply to Someonesmother]

Thanks so much for your good wishes. I do hope they can help you at your appointment in March. Fingers crossed for you.

[Someonesmother in reply to s7j7e7]

I am not keen on an immunosuppressant as if I get sick I can't take antibiotics so would rather just tick along and hope for the best really.It is a life of sorts

[Hidden]

I imagine your anaemia must be pretty bad for all these tests to be ordered. Mine isn't too bad at all but it is chronic & what I've been told is that it's 'anaemia of chronic disease' & just par for the course. But I can understand that this explanation isn't much help if anaemia is adding to fatigue.

[s7j7e7 in reply to Hidden]

Hi and thanks. Apparently my Serum Ferritin is non-existent and my MCV (size of red blood cells) much too small. I didn't have any symptoms of Anaemia and don't (yet!) have any of colo-rectal cancer, which is why I'm so puzzled by needing all the tests. How does the "chronic" bit affect you?

[Hidden in reply to s7j7e7]

Fatigue hasn't been a major problem since ESR's gone down. But then my Haemoglobin doesn't go much below 105. Every month I look at blood test results and most of what I take to be the red blood cell readings are a bit out. By chronic I mean that it just always is like this but rheumy / GPs are not worried. The last GP I spoke to (who, unusually, seemed to know a fair bit about RA) said that chronic anaemia is caused by having an inflammatory disease & that's it. A rheumy nurse also said that inflammatory arthritis patients often tend to 'run a bit low' in this respect. However, I've just had a look at past blood test results and the one reading that's usually okay for me is MCV. I don't seem to be checked for Serum Ferritin.

Presumably your doctors have reasons for the tests you are undergoing - and seems to me you have a right to know what those reasons are. Maybe give GP a ring?

Hopefully the doctors are erring on the side of caution and this is a good thing even if understandably worrying for you. Good luck and try not to worry too much.

[samjam]

Take a look at anaemia of chronic disease - I had numerous tests all coming back clear and then saw an article in a magazine which I showed my GP and he agreed.

[s7j7e7 in reply to samjam]

Hi samjam, my GP says it could be Anaemia of Chronic Disease but still wants to rule out cancer. I'm having to press for another blood test after 4 months of the iron tablets to see if they've made any difference yet/at all because my GP seems to have lost all interest while I'm waiting for the cancer tests. In a way I wish I didn't have to take so much control of my own disease and worry about whether I'm getting the right treatments or not. Shouldn't they be the experts?!?!

[Hidden in reply to s7j7e7]

Me again, should have read this comment of yours before replying just now. I've heard that if chronic disease is causing anaemia, iron tablets may not help. Can't even remember where I heard that & of course I may well be wrong, but you might want to ask about that too.

Taking control is the way to go - I wish 'they' would just manage my disease seamlessly too, but unfortunately that does not always happen.

Hopefully when you are out of the woods with this current problem you'll find that's there's less effort & less anxiety involved in coordinating things & advocating for yourself. It is such a learning curve isn't it?

[s7j7e7 in reply to Hidden]

It is a steep learning curve, but that's what is so great about this site: everyone's so helpful and friendly - and talking from the real expert's point of view ie: our own!