Low Hemoglobin

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ameslouise

ameslouise

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Hi Everyone -

In the hospital now - originally came in due to stomach flu (severe nausea and VIOLENT vomiting). CT scan showed some narrowing but probably not enough to cause obstruction.

The greater concern is my low hemoglobin level. I usually am around 11 (normal I think is around 14 for a premenopausal woman). My last test in the Fall showed my red cells were smaller than normal, and the testing now shows they are continuing to shrink.

I am getting an IV iron transfusion right now, and they are going to scope me in the morning top and bottom. Need to find out if there is internal bleeding or somethig else causing the anemia.

I suspect it's my diet couple with general poor absorbtion we Crohnie's deal with.

I suggested vampires but no one was buying it.

I know Pirate recently had low hemo count and infusions coming up. Anyone else have this issue? I'm not one for speculating but am interested in other possible causes and solutions anyone else may have experienced.

Thanks - Amy

PS This helps explain my hair falling out in clumps and restless leg syndrome lately.
 
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Hi Amy - My Hemoglobin has been as low as 8 this past November due to meds (Imuran and at the time Remicade) AND BM bleeding. It since went up to 11.9 which is the highest its been for me in q while. My red blood count is also low.
I am still on imuran and Cimzia replaced the remicade. I BM bleed rarely. my diet is very limited to gluten free. I take vitamins and try to exercise at least 45 minutes per day. Some people get Procreit?
 
I battle anemia too. Normal for premenopausal women is 12-14 and for men its a bit higher. I usually run around the 10 area. The best thing I've found is an Iron pill called Slow FE, its expensive but worth it because it doesn't hurt the tummy. My bleeding is internal so it really doesn't fix itself until I heal the insides, but the oral suspension helps. I've never had an infusion.

Hope I helped a bit?
 
Hi Amy,
Sorry you're in hospital feeling yuk. Having just come out, I really feel for you!

I like your suggestion about vampires - ha ha! at least you're able to laugh!

I can't add mcuh about anaemia except that I've it on and off over my Crohnie time. I think it's down to poor absorption like you say. I never bled - at least nothing visible. I took iron pills and reverted to eating red meat after being a veggie for a few years, which seems to have helped.

Hope you feel better soon,
Gail
xxx
 
Aw Amy
hope you're ok sweetie?
horrible being in hospital
hope everything goes ok tomorow with the scope, thinking of you
xxx
 
Hey Amy, most of the time the anemia is caused by low Iron counts and you are right about the poor absorption. I'm sure the infusion will help pick you up. The meds also doesn't help. I think my problem is part from the Entocort. Now that I'm off it I've also quit having restless leg problems.

Hope the infusions work. I start my Iron Infusions tomorrow, than every Friday for the next 4 weeks.
 
Thanks all. I really don't mind being in the hosp other than being away from my sweeties at home. They see me everyday and Harrison seems to be dealing okay.

I have tried Slow Fe before and have trouble tolerating. The liquid stuff seems okay so far. I got the infusion today (didn't realize it would take so long - almost 4 hours!). Either the infusion or the liquid turned my tongue black and made my teeth dark. Levi said I had vampire teeth. Maybe I am draining my own blood?

The scope will show whether it's internal or absorbtion. Hoping for the latter. Will update tomorrow!

- Amy
 
Amy, hope you are holding up okay. Best wishes for good test results tomorrow. Take good care!
Re. your question, my red blood cells have shrunk, too, and they are misshapen. I am being stuffed with iron pills and will be retested in June to see if further action is warranted.

(And, just in case: good luck with the vampires.)
 
Hi Amy

I used to have the same problem, even after a blood transfusion...only half of it would show up when they tested my hemoglobin. I was losing blood with my UC but no way as much as the blood tests were showing.

In the end my spleen wasn't working properly, it was destroying my red cells before they had grown properly and quicker than my bone marrow could make more. It was an auto immune thing for me.

Sorry to hear about the vampire teeth !! Hope you find out what's happening soon.

Lyndsey xx
 
Hope your scope goes well and they find answers! That is totally nutty about your tongue turning black! Haha. Glad your spirits are still up though :)
 
Update - Upper scope - Good! Lower scope/J pouch - BAD! Real bad. Very active Crohn's. So much for that low CRP number.

I had told myself that if the scope was bad, I would start the Humira. So - Levi grabbed it out of the fridge and is bringing itdown right now. We'll fire up the loading dose tonight.

I am also getting 3-4 bags of blood to boost my hemoglobin.

Feeling good physically and mentally, though I feel really defeated because I wanted to do it my way. I am scared of the Humira but I can't let that fear rule me or keep me from doing what is best for me.

Thanks for your support, everyone. Don't know how I would be handling this if it wasn't for the friendship, advice and support I get here.

- Amy

PS Will still hang garlic on my door just in case....
 
I'm convinced CRP doesn't do much for saving us a trip to the hospital, haha.

You can do it, Amy!! You are one of the most positive people on here :)
 
hi Amy, dont worry too much about the Humira, or other TNF med. it is very effective with minimal side effects. dont see it as a defeat, as you are so positive.
Why 3-4 bags of blood? even with low hemoglobin ?
best wishes
 
On my last blood test mine was a little low, but nothing my Doc was to concerned with.

Don't stress to much about the Humira, it is not to bad (though jabbing yourself with a needle sucks). A little over two months now and I feel great.

I hope you can get back to feeling better soon.
 
Thanks, everyone, for the nice words of encouragement. I spoke with the doc this AM and he said ikely the hemo was so low due to "slow seeping" of blood, so slow I didn't see it in stools at all. I look tons better today - my color is much better. My teeth and tongue are still black!

I will try the Slow FE as it's been a while since I've taken it, and start eating clams!
 
Hi Amy,

Sorry you are in the hospital. I never liekd being therebut in the end it was when I really got soem wrok and thigns moving. ( Sorry about the opuns) i've had iron infusions. I had about 5 of them. i felt a lot better. I too have recently been told my iron is low again. I will liekly go back for an infusion.

I am also seeing some new health professionals and am considering new options for treatment. Like you I'd like to stop the slow leakage of blood.I am ok on my medication if I live a very slow and simple life but unfortauntely it can be lonely. I need to work or have healthy food and diet another way. I can't afford to live healthy on disabiltiy.
I am gratful taht I ma healthy enough to volunteer at a IBD Fundraiser tomorrow. I hope you are home with your sweeties very soon.
 
Amy, glad your feeling better. Know all about the 3-4 units of blood. Low Iron and low Hemoglobin just makes you feel 100 yrs old. Do what ever you need to do to get better. Your needed by some very special people (your family).

Could you post a picture of you with a great big smile. Want to see your vampire teeth. lol
 
I give myself Cimzia shots every two weeks and its not that bad... it is better than the 4 hours remicade IV. I have not try Humira but the TNF are pretty much the same.
My bloods were also very low and I feel I need to do something to boost my hemoglobin.
 
Floradix is an iron supplement you can find at the health store. Its supposed to be easy on the tummy, easy to absorb with less side effects than the pharmaceutical supplements. Lots of vegans take it actually.

Take you iron suppplements with vitamin C to increase the absorbtion.
 
Lydia said:
Floradix is an iron supplement you can find at the health store. Its supposed to be easy on the tummy, easy to absorb with less side effects than the pharmaceutical supplements. Lots of vegans take it actually.

Take you iron suppplements with vitamin C to increase the absorbtion.
Click to expand...


Thank you for the information. Are you taking it in the morning?
 
Hi everyone - Just a little update. I am feeling GOOD. Not sure if it's the iron transfusion, the blood transfusions, the Humira, the antibiotics, the low res diet or combo of all, but I feel great. Sleeping like a champ, no pain, no cramps etc.

I did start on Slo-FE and seem to be tolerating it so far. I just couldn't do the liquid iron.....

Pirate said:
Could you post a picture of you with a great big smile. Want to see your vampire teeth. lol
Click to expand...

Here's what it did to my tongue. Aren't I gorgeous?

mytongue.jpg


I have added a little more animal protein into my diet (mostly fish) to aid in the absorbtion of plant based iron. But since I am on lo-res and not doing many raw veggies, I started drinking this Green Goddess drink that is really yummy and has tons of raw veggies in it.

Thanks for the advice everyone! -Amy
 
That's awesome, Amy! I had no idea that would happen with iron infusions. Glad you are feeling much better. I'm still doing well too! :)

Where did you find the drink Green Goddess? I'm interested to know more about it!
 
I got the Green Goddess at the grocery store, in the produce section where the Pom brand pomegranate juice and cold apple cider are. If your store has an organic refridgerated section, could be in there too.
 
Glad to hear you are feeling better - I missed this thread when it started......

Wow about the tongue.......almost looks like you drank a bottle of red wine! lol.....

I've been super-tired myself lately - no other real symptoms so I'm not sure what is up.,.......

Take care of yourself - are you home yet?
 
Hey Amy! Its so great to hear that you are feeling ALL better!
Please keep us informed about how you tolerate the Slo-FE other than turning your gorgeous tongue black, lol!
 
Hi Amy,

Glad to hear you are feeling better. I have had problems with low haemoglobin and have previously had 2 IV iron infusions which seem to do the trick - I didn't have any blood in my BM at that time so still no idea why apart from malabsorption.

I have been on Humira for almost 3 years now (occasional breaks due to infection and surgeries). I had no side effects from it apart from redness at the injection site.

Hope you keep feeling well.
 
One unit of Packed RBCs should raise the hemoglobin by 1g/dL and the hematocrit by about 3%. (in an adult aprox. 150lb) I am guessing the doc needed to give you 3-4 units to get your numbers where they should be.
I double checked this in my blood bank book for school....
Hope you keep feeling better. And I hope you don't need any more transfusions!!!
 
terri_ann87 said:
Hi Amy,

Glad to hear you are feeling better. I have had problems with low haemoglobin and have previously had 2 IV iron infusions which seem to do the trick - I didn't have any blood in my BM at that time so still no idea why apart from malabsorption.

I have been on Humira for almost 3 years now (occasional breaks due to infection and surgeries). I had no side effects from it apart from redness at the injection site.

Hope you keep feeling well.
Click to expand...


Hi terri_ann87 and welcome to the forum. Humira, as the other TNF drugs like the Remcade and Cimza are known to lower the RBC count as well as lower the Iron absorption and maintenance. it is also one of the symtoms of our CD and UC.
Best wishes
ACG
 
Hiya amy
Jesus! You look like you've been sucking Black Jacks (yummy liquorice sweets)
so glad you're feeling much better, at last, good luck with the raw veggie wotsit, think I'd **** thro the eye of a needle if I drank that!
lotsa luv
xxx
 
I am anemic as well. I had several iron infusions and even had 3 blood transfusions! I am now on Bifera. It seems to help. Although the last couple of days I have been wondering if maybe my iron is getting messed up again. I have been having some tremors. Not sure. Going to ask my doctor on Monday.
Oh, and I have been on Humira for a while. I am still losing hair...which is very depressing to see so much come out. But my symptoms have been much better since starting the Humira. Good luck with it! I hope it works well for you!
I really like your idea about the vampires! Too bad no one bought it. :p Hope you are feeling better!
 
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Hey Amy, glad to hear you're feeling GOOD. Hope it stays that way for a long long time. The black tongue is very fetching.
Gail
x
 
Hi Amy,

Roo is always on the low end haemoglobin range too. Her GI says it's a combination of malabsorption, like you said - seeping blood (like a dripping tap) and menstruation. Glad to hear you feeling much better.
 
Thanks, everyone! I am feeling great these days!

Just a quick update - hair still falling out but the restless leg syndrome has completely gone! Amazing!

Tolerating the slow FE quite well -also added spriulina. Between those two things.... my poops are crazy green! Oh, so much fun!
 
I started Slow Fe a few weeks ago, and shortly afterward my poo turned blackish green. Must be why. Glad you are feeling better!
 

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