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Hi all,
I went back and read everything again and wanted to post....

I DO still have my periods every month. They are not bad right now; last year they were pretty heavy at least every other month, but not bad at all now.

I am taking Nexium (40 mg) daily and have for years so I wonder if that's at least some of the cause of my not being able to absorb iron. When I talked to my gastro doc about this, he didn't seem all that convinced about it. I also asked him if he could check my thyroid since my iron isn't THAT bad (11.4 if I remember correctly), my ferritin levels are just pretty low (3) and I have heard that when something is going on with your thyroid that it can mess up your ferritin levels. He said he would check my thyroid next time I get my blood testing done which is mid-March.

On Monday, March 1st, I do go for the camera/capsule test after my insurance company finally approved it! It took alot of hassle for them to finally approve this test, so I'm really relieved that I can get this done. Has anyone had this test done? Wondering what to expect and what your results were. My doc said that I might have blood vessels that pop and bleed randomly and that could be causing my low(er) iron and ferritin. Have you heard of this?

I also had a question for all of you out there--are you FREEZING all the time? I am so cold that the minute I get home, if I can, I get in my pj's, socks and robe (all fleece!). I wear a sweater and jean jacket all day at work and sit with a portable heater by me and at night I sleep with a heating pad that shuts down automatically every so often and since I don't sleep well AT ALL, I wake up and turn it on all the time!! LOL!

I am also concerned about losing my hair! I know people have posted that their low ferritin has caused hair loss and that freaks me out! My hair is dry lately, but so far it looks like I'm keeping it all.

Gosh, I am sorry that all my posts are like a novel. I just have so many questions about this and thank all of you that are willing to share your journey. I probably didn't ask all the questions I wanted to when I read thru your posts so I may be back again with more questions!! :)

Take care and thanks again!
[QUOTE=wanglin;4254787]I have had 2 iron IV infusions (don't get confused with transfusion) and am set up to have my 3rd in about three weeks. This has been over a 3 year course. My Ferritin levels went from 165 last August to 32 a week ago, so my body is still not naturally absorbing iron even thought I take 1 Icar tablet each day. My white blood and red cells are below normal levels and my hemaglobin is low as well. I am still very frustrated about the hematologist not knowing why I can not absorb iron after every test inthe book(Bone Marrow, Pill cam, endoscopy, colonoscopy, smear tests). The PA last visit said, " I guess we'll just write it off to your cycle as the issue" and I immediately told her NO Way as my cycles are not heavy. I truly think it is a heriditary auto immune disease since my sister appears to be anemic as well without answers. I hope that maybe something will stand out in your blood work to give your doctor a direction to take.

On the first visit you can expect a great nap as they feed you benedryl in case your body reacts to the iron in a allergic way. I have not had an allergic reaction and feel pretty normal afterwards, just groggy fromt he benedryl. The only other thing to watch out for is bad headaches, and lower back pain or joint pain because your body is trying to absorb a large quantity of iron all at once. Cheers to IV Iron![/QUOTE]

Thanks for the response and for the correction about infusion rather than transfusion! Rookie mistake!! LOL! The info you gave me was REALLY helpful. I have a couple of questions, tho, other than the headaches and back/joint pain, did you notice that overall you felt better right away? Honestly, I don't feel ALL that bad. Tired, yes--but I think I've been this way for so long it doesn't really slow me down or stop me from doing what I've always done as far as chasing after my family. BUT once I get home, I see that I am TIRED and it's not a normal tired... I really, REALLY tired, but I don't sleep well, it is really strange. :confused: So there's not a ton of motivation to get out and exercise and that's what I'm hoping this iron will do for me. Help me to feel better all around that I WANT to exercise and feel better!

I am so sorry that they're not able to get to the bottom of your iron problems; that IS so frustrating. My gastro doc did the same thing--"it's because of your period" and "you're cold all the time because you're a woman, women are generally colder than men; it's not anemia related". Frustrating. I hope they can get it figured out for you. Do you by any chance take Nexium? I am really hoping that's the main cause of my anemia and this will just "go away" if I am able to stop taking it.

I hope to hear back from you :wave: and thanks again for taking the time to post an answer! You don't know how much I appreciate it!

**Jonnstar--I will look into this! Thanks for your responses, also! So helpful.

-Wendy
Well, I've had my 2nd round (week of) Venofer IV infusions and have had no side effects! I have noticed that I'm not freezing all the time, too! I honestly haven't sweated in years (because I was always so cold) and I've been hot and actually sweated at times! I can't believe it!! I am praying that between the switch to Zantac and the IV iron, my iron and iron stores (ferritin) will put me back at normal levels and I can get on with my life (even it it includes sweating!). LOL!

I will keep you posted on how it goes once I'm done with the IV iron. I have three more weeks of them, then wait 6 weeks before I see the doctor and give blood again before they check where everything is at. I'm believing that I'm going to be back to "normal".

Thanks to all who have read and commented on my situation. You have all been so wonderful!

-Wendy
Well, I had my 5th and last iron infusion a couple of weeks ago. I honestly can say I don't feel much different. For awhile I was feeling warmer, but now I'm back to feeling cold much of the time. Energy level hasn't gone up much either. I know everyone says it can take up to three months for that to come up, so I'm patiently waiting.

Upon the request of my hematologist I had to have another Upper GI/EGD last week. Had that with my gastro doc and they took a bunch of biopsies and went all the way down to my bowel to check it all out. From what I recall and my husband says, everything looked okay to the doc, but I haven't gotten any results from the biopsies. I would assume that since it's been about a week and a half that if anything serious was going on, I would know by now. I guess I'll find out more info when I go back for my follow up with the hematologist on Sept. 13th where my numbers are, etc, and the results of my EDG biopsies.

One things I did find out was that I have pancreatic tissue in my stomach!!! Of course I freaked out, but the doc said it was just a genetic thing and not to worry at all. I googled it when I came out of my "fog" from being put out for the procedure and it looks like only 15% of the people in the world have pancreatic tissue in their stomach and it's usually nothing to worry about. OF COURSE "I" would have to be one of the people in that 15%. FIGURES!! LOL!

So, I'm praying that everything comes back as normal. The gastro doc did say before I had the upper GI/EDG, that my body just may not absorb iron. Lovely. Can't wait to hear if that is the case and what they do for someone in that situation. Iron infusions for the rest of my life? Oh brother!! LOL. Guess I just have to see what happens. I'm going to just keep on praying!!

-Wendy





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