Anemia

[Kacey]

SO my ferritin level was 12 in June, then 10 in September and last I've heard it was 8. I am white as a ghost, I've been losing WAYYYYYYYYYYYYYY too much hair, I have dizzy spells associated with low blood pressure, I am tired and sooooooo incredibly irritable. I am just wondering if anyone else has or is going through this. This is the worst part of the disease for me. I feel and look like shit! (excuse the language)
What happens if the iron doesn't work? Will my ferritin just keep dropping? I just had blood work done today, going next week for TB test to prepare for remicade. I can't wait to feel good again.
confused2:

 

[katiesue1506]

I've been in the same situation. I usually hover between 9-10 area. I get around 8 when I'm flaring real bad. If you get much below 8 they will transfuse you (blood transfusion). If the oral iron doesn't work, they also can give you an iron iv infusion to help. Hopefully you are cleared for Remicade. Once your bowels heal up your numbers will go up. I know it doesn't feel like it now, but once you start controlling the Crohn's, the anemia will get controlled too. I recently hit 12.4 with Humira, Imuran, and Prednisone... I was so happy. Normal level for menstruating women is 12-14. Also what kind of iron supplement are you taking? I've found the brand SlowFe (or CVS makes an off brand of it too that's cheaper) is the best because its slow release and doesn't upset the tummy as much. Good luck Kacey!

 

[kasper87]

ferritin? Are you sure you don't mean hemoglobin?

my worst was 6.6 somewhere around there. I needed a blood transfusion.
Ive had 3 transfusions so far. Scary I hate it. I need to donate my own blood for the future.

 

[Kacey]

Ya it is ferritin. They've prescribed iron supplements, but she said the hemoglobin was ok...never gave me a number. I really don't know exactly what it means (to have low ferritin, normal hemo) Do you know what the heck it all means? That's probably a silly question, but I have always asked minimal questions, taken or not taken meds, and had my monthly blood work done. Just now am I starting to take an interest in the disease, I was very careless. I can imagine how scary blood transfusions are. That must be a lot of blood loss!

 

[shazamataz]

Apparantly there is a difference between different types of iron in your blood. The tests can show what is circulating and also iron stores. I can't remember the terminology. I have for a long time had okay circulating levels but low iron stores so amd constantly on iron supplements.

 

[imisspopcorn]

Iron is absorbed better when it is in the presense of Vit. C. If you can't take it with OJ, buy a chewable Vitamin C tab. and take them together. I always take a multi with iron and during my period I take an additional iron too. Also, if iron bugs you stomach try Flintstones chewable with iron, it doesn't bother me as much.

 

[katiesue1506]

I take childrens multi's without iron and then double my Slow FE dose to two tabs daily when really low. Then I also take a VitC when REALLY low.

 

[Kacey]

I don't find the iron bothers my tummy, but getting some OJ is a good idea! It's only been about a month, so I guess it is possible that the supplements havn't taken effect yet. I'd go tanning in a tanning bed if I wasn't so scared of getting cancer! lol, I am sooooo white!!! Is 8 a really low number for ferritin? I've been on a multi-vitamin too, my B12 was low for a while, so I was taking B12 tablets, now B12 is all good.

 

[SammyAnny]

I have been in your shoes, but was almost given a blood transfusion I was so low (5), they gave me an infusion and I responded immediately, so they opted for weekly infusions. IV infusions are the fastest way to get iron into your system. Be sure you aren't given Iron Dextran, they are banning it in many hospitals due to it making people stop breathing. Call your doctor and ask if that is a path you can go. I recommend infusions for anyone in the critical region of anemia.

 

[Kacey]

so is 8 a critical region of anemia? (p.s. thanks all for your info)

 

[Pirate]

After having my heart atack in Feb of 2008 I was put on Plavix even though I objected. (Plavix is a real no-no for CD patients). I was back in the hospital a week later and my levels were down to 7. I was given a couple of units of blood and it came up to 8. I had to have Iron infusions once a week for 3 weeks just to get it over 10. it took a long time to get it up to a normal level for a man. Around 16. Janis thinks that by taking the Plavix it is the reason I started this latest flare-up. I'd been doing good before that.
I can't take iron supplements orally cause they cause me a lot of stomach pain.

 

[Creepy Lurker]

Just finished a 5 week course of Venofer infusions. I'll find out if it's worked next week.

 

[chelli]

Hey Pirate--Are you still on Plavix?

 

[Pirate]

Hey Pirate--Are you still on Plavix?

Nope. Just low dose bayer asperin. When my GI came back from vacation and I was backin the hospital from the bleeding I told her about the Plavix and what her replacement had said about worrying about the heart first and she said I'll take care of this. Had a talk with the Cardioligist and off I came. Had my stress test back in March of 09 and aced it. Things are good with the heart.

Plavix is a big problem if you tend to have leisions that bleed and/or ulcers.

 

[Nytefyre]

My ferritin level was around 3 in July of last year. I have had multiple blood transfusions. I have been on IV Iron since July and my number is at 113 as of last Thursday. I have my next infusion on the 20th and I can't wait, as this crazy flare that I have been in has sapped my energy.