Anemia Support Group

Anemia (or anaemia), which literally means "without blood," is a deficiency of red blood cells and/or hemoglobin. This results in a reduced ability of blood to transfer oxygen to the tissues, and this causes hypoxia; since all human cells depend on oxygen for survival, varying degrees of anemia can have a wide range of clinical consequences.

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deleted_user 05/27/2009

Hello all :) I'm new and I thought I would share my story in hope that A. it would help me to vent, and B. it would benefit someone going through a similar situation.

I've struggled with anemia during pregnancy but up until this last time seemed to bounce out of it alright.

I had my last child 2 years ago via c-section where I suffered a hemorrhage and haven't really recovered from the anemia since. As my condition has worsened they have tried and tested almost everything.

I can't tolerate the oral iron due to peptic ulcer disease (currently battling 6 ulcers that are not bleeding). I had 2 IV iron treatments to which I reacted to badly even with pre-medication on the last treatment (yesterday) and now my hemoglobin is down to 8.8 and I'll be getting 2 units of blood in a couple of hours.

Color me not excited, or just color me, because I'm really pale.

I will be having a capsule endoscopy when my hemoglobin stabilizes. My TIBC is 19 and my ferritin is 3- so I'm willing to try anything that will find a cure for this unrelenting fatigue, weakness, dizziness, and palpitations- oh and the being short of breath at 32 is a real drag :(

I hope everyone is seeking the medical help and having good results.. I'll be floating around as I am able and I hope to update in the next couple of days about how the transfusion goes today.

:) Thanks for listening!

Cherie

deleted_user 05/27/2009

Sorry to hear that you are going through all that. You mentioned being short of breath, have you been checked for pulmonary embolism? I was just diagnosed with that on 3/3/09 and small deep vein thrombois in my lower left leg. I thought I was just having a hard time getting over bronchitis and that it had turned to pneumonia. About a week and half of getting very short of breath, my co-workers urged me to go to ER to have it checked. It turned out that I had multiple bilateral clots throughout both lungs. The anemia, I had had in the past and it showed up again while I was in the hospital. The doctor thought I was just iron deficient but now that my iron levels are up from taking supplements, I'm still showing being anemic. I now have to go next week and have my b-12 tested and some other tests to see what is still the cause of my anemia.

I'll keep you in my prayers. Please go have yourself checked out at an ER if the shortness of breath continues and the other symptoms of weakness, dizziness and palpitations!

Hugs and blessings,

Tabby

deleted_user 05/27/2009

Tabby,

Thank you for your response- I was in the infusion center today getting 2 units of blood and got a good assessment. The shortness of breath is mainly when I walk up the stairs. I have a strange "full" feeling right now in my belly and chest from the blood transfusion. I had it before I left so they said to go in if it gets worse.

I've had a PICC line in for a little over a week. Now that they gave me the blood and discontinued the iron infusions I hope to have it out within the week.

My OB called back and said go ahead with an ultrasound without having to be seen first, so they will call to set it up tomorrow (I hope to be in by the end of the week).

Right now I'm just trying to relax about it all and try to sleep tonight. Thank goodness for ambien these days. You would think with the anemia I'd sleep like a rock at night.

Does anyone else have trouble sleeping even though you are exhausted?

I hope your testing goes well, Tabby. I've read a lot of your posts and it sounds like you are dealing with multiple issues at one time (much like everyone on the board) but I know how complicated diabetes can make anything!

Best of luck to us all :)

deleted_user 05/28/2009

I have trouble sleeping even though I'm exhausted. I'm afraid to take anything to help sleep because I work full time and would be afraid that I might have a hard time waking up to make it on time to work. It's hard to go to bed before 11:30 pm because my husband stays up until about midnight. It drives me nuts sometimes at how late he stays up as I'm a light sleeper.

Hope all goes well with your ultrasound. Keep me posted.

Aust 05/31/2009

Sounds like your not having fun right now. My iron dropped to 6, they have no idea why yet, also diabetic and epileptic and other things like so many. I had a c section, followed later by an etopic preg that burst on the operating table. If I had been in any other situation they couldnt have saved me the specialist said. But it did leave an infection which took a while to be cleared. Damaged permentley part of the bowel and that caused a b 12 anemia for life. But this is nothing to do with latest. Just thought as you said c section, if by chance you picked up any infection from op that may have done something too. Hope they can help you fast and find a reason.

deleted_user 05/31/2009

Aust:

The ultrasound turned out good- no fibroids. I\'ll see my OB soon and talk about the uterine ablation for the heavy periods.

My B12 tested ok so it isn\'t that, but I\'m sorry for what happened to you- that is really miserable. Do they give you shots to replace it?

deleted_user 06/01/2009

I went to my Dr. recently also to discuss my heavy periods. She gave me a few suggestions. One of them being to take 400mg of Ibuprofen every 6 hours for a day or 2 prior to my period and for a day or 2 into it. That is supposed to reduce your bleeding by about 1/2.

Even more amazing for me, however, was something so simple! I took 2 500mg capsules of Evening Primrose Oil 2x/day for a month. My period went from being very heavy @ 10+ days long to about 5 days long and quite light in comparison. I did take Ibuprofen as well but not as much as my Dr. recommended. I mainly took it just for the pain relief over the first 48 hours.

This has worked for me 2 months in a row now. I am thrilled! Hopefully this information will be of use to others. I was astounded that something so simple and natural could help so much.

Aust 06/01/2009

Had to have a shot before starting meds. Told them first and last and it was. Supposed to be about every month, but no way. Who ever gave it to me needs to learn how to do it without hurting that much. Found one iron tablet a month ago that is ok for celiac and diabetic and taking it. More blood work in about 5 weeks if Dr gets his way. But feel better after nearly the first bottle already, so must be doing some good I hope. Thanks for asking, and do hope they can help you.

deleted_user 06/02/2009

I just did the blood work today for B12 to see if that is cause for my Anemia. I should know in a few days if I can get a follow-up appt.

deleted_user 06/02/2009

mia176: Thanks for the response :) I\'ve been taking the primrose for about a month. They have me on the birth control pill, skipping the sugar pills, but I just started spotting today- so I\'ll see how bad it gets in a day or so I suppose.

I have 6 ulcers- at last check they weren\'t bleeding, but I can\'t have any ibuprofen/NSAID products (no onions, pepper, peppers, spices, and oddly- high fiber products- I do ok with natural fiber though).

During this last week I\'ve had increased belly pain and there has been talk of doing the capsule endoscopy. My appointment with gastro is tomorrow at 9 so I\'ll update on what the plan is tomorrow:)

I have notice a huge increase in burping- what\'s up with that? I don\'t feel very lady like.

In other news they took out my Picc line today! Yay! I get to take the bandage off tomorrow.

Back to parenting- it\'s bed time around this house :)

Let us know about your lab results Tabby!

deleted_user 06/02/2009

Congrats on getting pic line out. Wow, you are going through so much. Please know you are in my prayers. My son is only 11 1/2 yrs old be he has bowel issues/acid reflux and some of your gastro problems sounds like what he goes through sometimes. He went to his school nurse today because his stomach was hurting but not much she could do. He said when he got home from school that he passed a lot of gas and that helped. He\'s never been scoped but has had many other tests relating to his problems, hopefully when you get capsule endoscopy done it will help with what\'s going on with you.

I\'ll keep ya\'ll posted about my bloodwork and let us know how things go w/gastro appt.

Take care,

Tabby

deleted_user 06/02/2009

Awww Tabby, I\'m sorry about your son\'s troubles. I\'ve struggled since I was a teenager and part of tomorrow is being screened for Zollinger-Ellison syndrome

http://www.mayoclinic.com/health/zollinger-ellison-syndrome/DS00461

because I had an elevated Gastrin Serum level. I have more anxiety the more I read but it\'s pretty rare so I\'m hoping the numbers work out. The most recent bout (feb) I started on 80 mg of prilosec then dropped to 40 mg daily after 6 weeks but it\'s not helping anymore :(

Has your son had a gastro work up? I started feeling better when I cut out dairy- pardon the pun but "food for thought".. I have a lactose intolerance like nobodies business and before I realized that was part of the problem I had painful bloating and trapped gas pain until I could pass it.

I\'ll update again tomorrow :) Thank you for your thoughts and prayers as you share mine as well!

-Cherie

deleted_user 06/03/2009

The GI doc wants to repeat the EGD today (leaving in 15 minutes hungry with a killer headache) and they want to do a colonoscopy- scheduled for Friday (joy).

My job asked me to resign with 2 weeks notice- I\'ve missed so much work lately I can\'t say that I blame them. They agreed not to contest my unemployment for health reasons. I\'m not happy about it but it\'s for the best.

Plus they are going to do a medication/blood test for the Zollinger Ellison syndrome. I can\'t remember the name of the medication but when given the Gastrin levels will rise with the ZE syndrome, but if you don\'t have the ZE syndrome your gastrin level will not rise. He said it\'s just to make me feel better because the syndrome is so rare.

I\'ll be out of it tonight after the meds for the EGD so I\'ll update tomorrow before starting my bowel prep. Ick ick ick.

I\'ve never had a colonoscopy before- any heads up would be appreciated! :)

deleted_user 06/03/2009

EGD showed that my ulcers have healed. They put me on a stronger med to help with the pain. Colon exam Friday so I start my clear liquid hell tomorrow :P

deleted_user 06/06/2009

Colonoscopy went fine- no bleeding, so still no answers, but still good news. Capsule endoscopy to be set up Monday as well as the Zollinger Ellison Syndrome test. Apparently it's done so rarely that they are having to research how to even do the test.

Tested negative for celiac disease again (yay!)

Tabby- how did your B12 turn out?

deleted_user 06/11/2009

Hello all! I have my ablation set for tomorrow at noon (kinda scary) and then I have bowel prep on Monday and the capsule endoscopy on Tuesday.

I'm glad to be getting closer to a resolution but nervous about all of these procedures.

Has anyone else had an ablation? Any tips on what to expect?

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