I'm apparently anaemic again, guys

NCOT- I am sorry to hear you are anemic again. Is it possible this is residual from your surgery? if not, at least you may be able to get a hold of it now and early and prevent things from getting worse.

Maybe speak to your Dr about taking a mild CD medication or adding some supplements such as Vit D3 or slippery Elm to keep the rest of the intestines happy and prevent them from flaring up if there is any possibility it could be the CD.

Try to remain positive although I know how hard it is sometimes. I was near my bottom a few months ago after suffering for months with c-diff and a bad flare but finally after loading my system down with enough medications to slug a horse, I am finally in a better place.

Hope you get some positive news that could explain the anemia other than CD!

Hugs to you!

 

I'm sorry to hear that your anemic again. Are you menstruating?

I was anemic or borderline for the duration of my years menstruating. I was so glad to finally stop cycling. I stopped being anemic around the time I got rid of gluten; that was also coincidentally when my periods got lighter. I thought now that I've not menstruated in 9 months that I would be full of iron - but on my blood test last month my hemoglobin was a whopping.....12.4. Oh well, some of us just don't have a lot of iron. I hope that when you find out the numbers tomorrow they aren't all that bad.

do you have constant diarrhea?

Well, that was the most frazzling visit to the doctor's surgery ever. One thing I envy about the US folks is that you lot seem to be given your test results as a matter of course; you don't have to go chasing them down. Getting my results today was like pulling teeth. The receptionist could not have moved more slowly if she'd tried. Then she just stared blankly at the screen for an eternity, while I tried to tell her the results I wanted.

At some point during this torturous process, my parents entered. It wasn't entirely surprising; they'd been to the supermarket and quite often stop in on the way home to pick up my parents' numerous prescriptions. My dad started to speak to the receptionist about my iron prescription while I was still talking to her! He was butting in about something that was none of his business, really. That just made things worse for the next few minutes, while the conversation got waylaid by the sodding prescription. Eventually I got my results, but only because an elderly woman kept on coming out and pointing them out to the receptionist: "There's the CRP". "Oh, CRP" (that's what I said!)

I'm afraid I lost it a bit. Most of the time I'm pleasant and polite, but this just really stressed me out for some reason. Why can't there be some electronic database where patients can access their test results? I don't even care if it's hacked; what do I care if some randomer knows my CRP and haemoglobin?

Forgot to mention I had my mum rolling her eyes in obvious amusement at my interest in something as oh-so-arcane-and-technical as blood test results. Finally I told her that for years I had trusted my doctors and had assumed they would take care of everything that needed to be taken care of. I reminded her of where that had ended up. She did back off at that and said she understood. On a side note, my mum has had a dodgy stomach and diarrhoea for the past 3 days: mum, I'm praying for you it's not Crohn's.

As for the results, well, things are not quite as bad as I feared. My haemoglobin is still normal at 13.4, but my ferritin has nosedived from 65-ish to 14 since March. B12 is 291, folate is 4.8, CRP is 6.6 and TSH is 4.57. I would like the last one to be a bit lower, but it does show the levothyroxine is doing something, since a few months ago my TSH was 11. I also don't know what to do about the iron: I've got the liquid stuff that I was prescribed. Has anyone had an iron infusion with low ferritin and normal haemoglobin?

tl;dr version - Had a 20 minute battle with the receptionist to get a few blood test results, despite the place being empty (apart from my parents).

@pmedic - Thanks! I will try to resolve the low iron before it gets worse, but I would like to know what caused it to become low in the first place. I'm glad you're doing better at long last; persistent c. diff sounds like a nightmare to deal with.

@Larasmom - I don't think doctors (and receptionists -_-) understand our fears when it comes to stuff like this. It doesn't help there are so many hypochondriacs nowadays, because I think people like us are lumped in with them. Maybe we shouldn't be so nervous, but, let's face it, we've got years of bitter experience to draw upon.

@kazbern - Yeah, I'm menstruating, but my periods have not got any heavier. The only time I lost my period was when I was really underweight, i.e. BMI of 16. That was about 3 years ago now. As soon as I started gaining weight, they came back. They're quite light, and I don't think would explain a fairly sharp drop in iron stores.

@gumby - Well, my GP is going on holiday, so I'm not gonna be getting info from him for a while :-/ Iron is absorbed in the upper small bowel, so an ostomy shouldn't affect iron absorption.

@Matthew - Well, I have an ileostomy, so it's kinda hard to tell <_<.

@scum - If my haemoglobin is normal, I think it will be hard to get a doctor to agree to iron infusions. That said, it's normal for the iron stores to be depleted first, and then the haemoglobin to drop: a low haemoglobin is the last stage of iron-deficiency anaemia. I've been prescribed Galfer, which is ferrous fumarate.

@gumby - My legs and breathing seem to be the most badly affected by anaemia. My legs always go to pot in some way, with restlessness, tingling, or whatever. I get very out of breath with any exertion too, although that could just be because I'm unfit. That said, I don't know if my iron deficiency is bad enough right now to be causing problems with my legs.

I don't have an appointment with my GI until September, which bugs me. Next logical step for me is the faecal calprotectin test, but it won't be easy to arrange. I can't email or phone my GI and I really don't like dealing with the IBD nurse. She's neither terribly friendly nor helpful. But I don't have much choice, unless my stoma nurse can do something.

You never had an elevated CRP, did you, gumby? Argh. That's why I'm not as reassured by a "normal" CRP as I would like to be; too many folks with Crohn's but normal CRP. I really, really would like my GI's opinion right now on a faecal calprotectin test. I wonder if my IBD nurse would ask him about it.

Anyway, cheers gumby!

Edit: I see you've updated your sig :p

I'm worried about me from your experiences, gumby :-/ I remember you being really worried about your low iron and obviously you were quite right to be. As for CRP, my GI told me a similar thing. He said that my blood test results could be relied upon to show a rise in inflammatory markers, but not everyone's could. However, that was back when I had a severely diseased colon. I would like to know what my CRP was in the early years of my Crohn's; before the fevers and other crap started up. I don't think even my GI would have that info (I wish this centralised database was actually a reality and not a pipe dream).

I'm so envious you have a GI who calls you at home... >.>

But seriously, I am kind of glad to hear you are not going on Flagyl. Think they have bad side-effects and are overprescribed in general. Personally, I loathed Flagyl but I was so ill at the time, it might have been that which made me feel so awful.

Interesting to hear about a very slow-growing variety; I call it 'simmering' Crohn's >_>. That probably explains some of those cases where people were fobbed off with IBS for 10 or 20 years and then finally diagnosed with Crohn's. I had simmering Crohn's for at least 5 years (if not longer), until it turned, bit by bit, into homicidal Crohn's.

How is the diarrhoea? Is it very bad?

I will have to put up with the snotty IBD nurse unfortunately. But I am gonna request the FC test. I haven't had one for about a year and I never did find out the result (long story). Might have to wait until Monday now, as I'm gonna be at my brother's all day tomorrow (again; the excitement of my life knows no beginning). I could call from there, but eh, I dunno. It could be noisy and we'll probably go to the country's most boring town centre in the afternoon.

I too wish being a patient wasn't so hard. Never dreamed I'd be dealing with this crap at so comparatively young an age. Well nobody does really. Everyone thinks they're gonna make it to 90 in tip-top health until they don't.

Thanks gumby! Yeah, I think I will ask for an earlier appointment. If nothing else, I might ask about going on Imuran or 6MP: the fast-track route to anaemia. Not massively keen on those meds, but not prepared to do the SCD and am feeling like I shouldn't be ignoring this any longer.

Meanwhile, I'll go check your thread :p

NCOT, nothing useful to add as far as advice because you and everyone else who has answered is way more fluent in this lingo and information but did just want to say sorry you are having so much trouble. This disease just sucks the life right put of you!
It is funny to me the differences in the healthcare systems across the world. Each seems to have its pros and cons. For me being in the US the definite pros are how quickly I can get into a dr and how readily they share our results. Mine does not to into specifics unless I ask but I am always told if there is an issue and here is why. The con is we pay out the ying yang in insurance premiums and deductibles and copays. An innocent bowl of popcorn turned into a major issue for me this week and one drs visit and three prescriptions later I am out around 100.00 which mind you is cheap compared to the insurance costs many Americans have. I don't know what system they use in Great Brtitain so not sure what payments are like for you. It seems as though if we could combine the best of them all we would have a near perfect system.
Hope you can get this resolved quickly!

Nothing new to report, folks. I spent most of the day at my brother's yesterday.

@mirowpl - A haematologist is a possibility actually. I have been referred a couple of times before, not with any resounding degree of success admittedly. The first time I don't even know why I was referred: I was still with my first hospital and, by this time, quite ill. (I'm so gutted they never told me anything and even more gutted with myself for not asking.) I presume I had wacky blood, but the haematologist didn't find anything wrong with more specialist tests. The second time I was referred for anaemia. Was with a different hospital by then and they tried to give me an iron transfusion, which went badly wrong - oops.

This was a few years ago now, but it might be worth seeing a haematologist again.

@tewcute - We have - *makes a sign of the cross* - socialized healthcare. That means nobody pays anything upfront; it's all funded through national insurance contributions, a form of tax. For the most part, despite its constantly harping detractors (yes, Daily Mail, I'm thinking of you), it works well. Most of the deficiencies of my early care were probably my fault, because I was way too passive. Like with everything in life, if you know how to play the system, you will have a massive advantage over those who don't. But in general I've had every form of treatment available; by this year or next year we will have Vedolizumab. Getting up-to-date treatments isn't the problem; it's the culture which is the problem. There are good doctors and nurses, but they tend to be swamped by the system and it can be hard to get to see specialists. UK doctors also tend to be a lot more reserved than their US counterparts, though that might be slowly changing. My GI is a youngish man and more communicative than any other GI I've met.

Anyway, I agree. Would be nice if we could combine the best of all worlds when it comes to healthcare.

@kazbern - Well, this is where the NHS is dumb: according to my GP, he is not allowed to order vitamin D tests for the same reason he is not allowed to order faecal calprotectin tests - "everyone would be wanting one". He did recommend vitamin D supplements, but said he couldn't do the test. There are online vitamin D testing kits for £25. Still can't decide whether to order one or just skip that step and start taking a supplement. The answer likely depends on whether my car passes its MOT next month :-/

Hi, So sorry to hear about your anemia. I also suffer from it and get iron infusions roughly twice a year and have B12 shots once a month. I know exactly how you feel, but it will get better and the doctor will find out what it is. Things will improve. Take care of yourself.

When you call the IBD nurse tomorrow, tell her that you need an earlier GI appointment because you found out that you are anemic and have reason to be concerned that your Crohn's may be active again. Tell her that you are requesting an appointment, a fecal calprotectin test, repeat bloodwork to check your whole nutritional status including B-12, Vit D and iron levels. Write it down first, sound authoritative and try not to take no for an answer. If she gives you any trouble, tell her that you have been seriously ill with your Crohn's and some prevention now will save the NHS money in the future if you have to be re-hospitalized. If she still says no, then ask to speak to her supervisor and lodge a formal complaint. If you need to, pretend you are playing a role in a movie of a confident, determined and highly assertive person....don't beg and plead, instead demand. I wish I could do it for you!!!

OK....hold your horses NCOT. I got bored and looked up thyroid and ferritin levels. I haven't found absolutely reputable sources, but it looks like hypothyroidism can affect your ability to absorb iron and therefore give you low ferritin levels. So maybe it's not your Crohn's at all, and it is still your Hashimoto's. So who helps you with that? Is that your GP or an endocrinologist? Maybe it isn't the GI you need...

http://www.livestrong.com/article/518724-ferritin-and-thyroid-function/

http://www.stopthethyroidmadness.com/ferritin/