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Crohn's Disease Forum » General IBD Discussion » Anemia....when do I get help?


12-04-2014, 06:54 PM   #1
Daytripper
 
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Anemia....when do I get help?

Hi everybody

I have been through a bit of a flare up and my iron levels have dropped. Ever since I've been diagnosed I've been anemic, and then not long ago my levels have dropped, then not long after that my levels have dropped even more. Well anyway, I'm waiting for my appointment for an iron infusion but I'm desperate for the appointment because I'm feeling really really low....my heart keeps pounding strongly like it's going to jump out my chest for a second then goes back to normal, and this happens a few times a day. I'm extremely pale, paler than usual (which is pale), dark circles under my eyes, and I can't quite catch my breath. I'm really worried and getting myself upset, should I be worried? I'm exhausted more than usual after everything. I can cope with these symptoms, they're a bit scary, but I can cope....I just want to know if they're anything dangerous. Does anybody have any experience with severe anemia? Help and comfort would be much appreciated! thankyou xxx
12-04-2014, 08:09 PM   #2
shamrock15
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This is potentially very serious, especially if you do not know why your levels are dropping. I would suggest going to the emergency room. I had severe anemia for about 3 years - I needed 60+ blood transfusions and a large quantity of iron infusions, generally on a 6 week cycle. The symptoms you are referring to came for me when I was in the 70 range for hemoglobin, and a normal range would be 130-160. You will likely need regular monitoring of your blood. Please tell me that you are not living alone and that someone can monitor you. Take care, please!
12-05-2014, 12:23 AM   #3
afidz
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The lowest I ever got was in the 40's. I was in so much pain and didn't understand why. The later told me the pain was because my body was protecting my organs so it stopped sending blood to my extremeties. I'm not trying to scare you, just trying to make you aware. If your having a hard time breathing, I world's consider going to the er. It could be related to the anemia or it could be something different. Regardless its worth checking out.
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12-05-2014, 05:01 AM   #4
DEmberton
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I guess Americans are using a different scale or something. I know recently my hemoglobin was 15, which is normal, but I was down to 8.5 a week before I had surgery in July and that's when they gave me a blood transfusion (which made me feel a hundred times better). By that stage I could barely walk from the house to the car without being completely out of breath, I was very pale, my lips were blue, my hair was getting thin and my heart was pounding in my ears all the time.

They did say they'd give me an iron infusion, but this being the NHS never got around to it.

Do you know the numbers? Hopefully if you were at serious risk they'd be going straight to the blood transfusion. How long are they making you wait?
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12-05-2014, 05:13 AM   #5
DEmberton
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Looking at the Wiki, Americans are using g/L and we use g/dL. So a factor of 10 different.
12-05-2014, 06:44 AM   #6
afidz
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It depends on who you ask. It really is just a factor of 10 though. Usually when someone tells me what my hemogloblin level is they say 10 point whatever, but when you look at the piece of paper on the report it would say something like 105. Does that make sense?
12-06-2014, 08:46 AM   #7
Daytripper
 
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Thanks for your advice everybody. I'm not too sure what my levels were last time I went.....but my nurse said she would be arranging an iron infusion, and then for me to have another straight after. It's been about two months now, and I've rang back a couple of times and my nurse said it's in the process of getting done. But I still haven't heard anything! I'm terrible too because I don't like to ring too many times and feel like a nuisance, but things like this are serious! Well I'm feeling much better than I was the other day, I've picked up some floradix/floravital. I don't know of anybody has much experience of using this, but within a few days of taking it my chest feels like it's opened up, my dad actually thought I had blusher on (when I didn't) and my freckles have re appeared (strange). I took some this morning and it felt as though somebody had loosened a belt around my chest! I'm taking some time off work because I really feel like I need it. Luckily I do have people looking after me, thankyou my mum and dad are always there for me which is great. I sometimes just find it hard to know, when is something very serious, when do I need help and so on. It's great that I can come here and ask for all of your helpful advice. Thankyou x
12-07-2014, 06:53 PM   #8
StarGirrrrl
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Daytripper personally I would go to A&E or ring 111 which is the NHS out of hours service asap.

My haemoglobin got down to 6 before it was found and I was told I could have died.

I had the pale skin, breathlessness and heart palpitations.

I really would seek medical care now and not keep waiting around, anaemia can be life threatening if it gets bad enough, and without meaning to scare you, I don't like the sound of your symptoms based on my experience.

Mine was only found by chance I hate to think what would have happened had it not, i'd likely be dead.

Even if the tablets have helped a little it may not last, and you obviously needed an infusion before and now you need one even more IMO. Floradix are actually very low in Iron so not a replacement for an infusion at all. My anaemia treatment is iron tablets by prescription they are 200mg 2-3 times a day and Floradix have just 14mg or iron per dose (2 tablets).
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2006. Tummy issues (more IBD than IBS).
2009 joint pain/worsening tummy issues.
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2014 IDA & low B12.

June 2014 admitted to Hospital 3 nights as emergency transfused 2 units of blood. Dangerous case of anaemia.
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Cause currently unknown but suspected CD.

Waiting on blood & stool results from January.

Hoping to stop anaemia treatment soon & lower B12 daily dose!
12-08-2014, 04:45 AM   #9
DEmberton
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Floradix are actually very low in Iron so not a replacement for an infusion at all. My anaemia treatment is iron tablets by prescription they are 200mg 2-3 times a day and Floradix have just 14mg or iron per dose (2 tablets).
What I was going to say. I tried some stuff called Feroglobin which is similar, but the proper prescription tablets I was given after surgery and by my GP are about 40x the dose.
12-28-2014, 05:33 PM   #10
Malice67
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Thanks for your advice everybody. I'm not too sure what my levels were last time I went.....but my nurse said she would be arranging an iron infusion, and then for me to have another straight after. It's been about two months now, and I've rang back a couple of times and my nurse said it's in the process of getting done. But I still haven't heard anything! I'm terrible too because I don't like to ring too many times and feel like a nuisance, but things like this are serious! Well I'm feeling much better than I was the other day, I've picked up some floradix/floravital. I don't know of anybody has much experience of using this, but within a few days of taking it my chest feels like it's opened up, my dad actually thought I had blusher on (when I didn't) and my freckles have re appeared (strange). I took some this morning and it felt as though somebody had loosened a belt around my chest! I'm taking some time off work because I really feel like I need it. Luckily I do have people looking after me, thankyou my mum and dad are always there for me which is great. I sometimes just find it hard to know, when is something very serious, when do I need help and so on. It's great that I can come here and ask for all of your helpful advice. Thankyou x
have you gotten that infusion yet? If not, I would REALLY call and make a stink... the symptoms you are talking about sound like the immediate attention level... I had to promise by hematologist and my GI to never let myself get to those symptoms again... any breathing trouble, chest pains or dizziness and it is immediately in for a hgb check, followed by iron infusions that day if below 9 (or 90, whichever units you use). I had let mine unknowingly drop to 4.6 and it took months to get into normal range. Call and make a fuss -- you aren't being annoying, you are trying to save your own life. Keep us posted!
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Diagnosis: Crohns of terminal ileum, GAVE ("watermelon stomach")
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as needed to control anemia: iron infusions (using Venafer since I had allergic reaction to Injectafer)
12-29-2014, 01:37 PM   #11
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I have similar issues. Last time I was checked, my hemoglobin was 7.7 which is the lowest it's ever been. I usually hover around 9. My Crohn's was barely diagnosed but I've had symptoms for 13 years. I know I have absorption issues.

I think iron infusions are next on the list for me. Ugh.
12-30-2014, 11:45 AM   #12
StarGirrrrl
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Hi Daytripper, how have things been? I hope by now you've had some kind of medical check if not treatment.
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