It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Anemia Message Board


Anemia Board Index
Board Index > Anemia | 0-9 A B C D E F G H I J K L M N O P Q R S T U V W X Y Z


Susie--Thanks! Glad I am able to help. You never know what helps people, so I just throw things out there that come to mind.

You didn't say in your original post that you were on PPI's, but that could very well be at least a ~part~ of your problem. Especially taking 40 2X daily. Do you take them morning and night? That inhibits absorption 24/7. If you were to only take 1 daily (I take mine at night), it would only inhibit 15-17 hrs something like that. The rest of the time you will be absorbing. It's worth a try. I take it hrs after dinner (hopefully I will absorb iron), and before bed. My main problem is at night when I lay down, the rest of the time I am fine. I have a hiatal hernia. I feel that I have to stay on PPI's because I start to get sick if I am not. My mother last year when she had the GI bleed was DX'ed with BE, so that really scares the heck out of me. She is 75 and had no symptoms at all, isn't THAT strange. I have heard of GERD being silent for some, and she was one of them. I was the one that had to take Nexium and watch out for everything and eat early. At the time of my endoscopy, the doc said that if I haven't gotten BE after 8 years that I probably won't get it. I thought that was strange too, but someone else on another board said that their doc said something similar to them. I am tempted to try not to take them but I know I can't handle it. Last year the Nexium stopped working for me and I had to change to Zegerid. Maybe that is something for you to try it is supposed to be better than Nexium according to my GI. I think that it is too. Perhaps one of those will take care of your 2 Nexium problem. I was so burned up when the Nexium stopped working I was not too happy for a month straight.

Anyway, people always try to find the one reason for a low ferritin and/or anemia, but there can be a few reasons, if not several. Maybe you have a few reasons. The ferritin takes years to deplete I think 2-5 yrs, but I may be getting mixed up with something else, however, it does take years for most. So if you had a combination of things like fibriods/ulcer? and never got your ferritin back up and then added PPI's to the mix with a lowered ferritin, I can see where it could become depleted. For me I had several reasons; I hardly ate red meat, drank tea all the time and red wine or tea with dinner, heavy periods (7 polyps removed at the time of ablation), and Nexium for 8 years. Did I leave out anything? So you see it can be from more than one thing, I don't think that the doctors can tell you definitively, I think that they rule things out and use common knowledge. This is why I was told one thing to find out it is another, although the periods really added to the problem I am sure of it. Ask your Hematologist about that.

Oh, and I see you B-12 and Folate are great. That's a good sign, I missed it the last time I posted. What clued you in that you were iron deficient?

Good luck to you with your Hematologist on Thursday. FLFLOWERGIRL:)

Edit to say: I forgot the thyroid as another reason for low ferritin, I knew that list was too short. Have you checked your thyroid or have a history of Hypo-T? FLFG
I'm so disappointed; I could cry. I finally got to see the hematologist today and she was very,very nice and I liked her but I still have no answers.:(

They took lots of blood and she actually had some results when she met with me but not all. I need to return next Friday so she can discuss other results. I also need to do those 3 day stool sample cards. She said would you do a stool sample for me? I said of course, I'll do whatever you want if you can get me some answers as to what is wrong with me. I thought that was a little strange that she asked. Also I already did them in August and had a colonsocopy n October with no signs of bleeding.

She didn't think the iron deficiency was due to my liver hemangioma or my fibroids especially since I had no vaginal bleeding. She was surprised that my GI didn't do another upper endoscopy (I had one in March 08) especially
since I had an ulcer scar. She did not think that the Nexium was causing malabsorption!?!?!? She said that would only be the cause if I was taking iron supplements and had low numbers.????

She might want to do a bone marrow biopsy.

She asked if I had any blood in my urine and I said no and also expressed surprise that no one ever did a urinalysis. She said that it wasn't really necessary because you would see the blood or the urine would be pinky. She then said that she could order a urinalysis but then she sent me on my way. i didn't remember until I was driving home. Maybe next week when I return.

She is defintiley testing my blood for high protein levels which are an indicator of multiple myeloma since both my parents were diagnosed within the last 10 years.

She mentioned I could have tiny little tears in my blood vessels that might be causing the blood loss. there is a test called a bleeding scan that can be done to locate these tears. I can't remember exactly what she called this - but it was 3 letters - maybe amv??? She was explaining everything very quickly while I was on the examining table and my notebook was sitting on the chair so I couldn't write anything down. I'm so mad at myself that I didn't say stop - I need to take notes.

Sorry to ramble and whine - I am so frustrated at myself for not remembering everything. I'm angry with the medical system that makes you crazy waiting for test results and appointments and I just want some answers.

Thanks for letting me vent.
[QUOTE=susieq14;3792852]I'm so disappointed; I could cry. I finally got to see the hematologist today and she was very,very nice and I liked her but I still have no answers.:(
[B]
I'm sorry that you are so disappointed. I was going to warn you not to get your hopes up, (didn't want to be a pessimist) because this is what I went through as well:(. Each time I thought the next doc would have the answers, but they did not. I can honestly say I feel your frustration. Two years later I still feel that my case is unresolved.[/B]

They took lots of blood and she actually had some results when she met with me but not all. I need to return next Friday so she can discuss other results. I also need to do those 3 day stool sample cards. She said would you do a stool sample for me? I said of course, I'll do whatever you want if you can get me some answers as to what is wrong with me. I thought that was a little strange that she asked. Also I already did them in August and had a colonsocopy n October with no signs of bleeding.

[B]Well, one good thing about the stool test is that you will already be very good at it. I thought I was going to croak when I had to do that. I have a very easy gag reflex and OMGoodness, it was bad. My DH took them to the lab for me:D.[/B]

She didn't think the iron deficiency was due to my liver hemangioma or my fibroids especially since I had no vaginal bleeding.

[B]This is good news. But if the fibroids were bleeding in the past 5 years as a problem, and the blood donations. Both of these could have lowered your ferritin, couldn't they? If the stores were not built back up then it would repeat itself, especially with 80mgs Nexium daily. You have to consider all forms of blood loss. But I don't know your whole story there, you will need to clue me in on that.[/B]

She was surprised that my GI didn't do another upper endoscopy (I had one in March 08) especially since I had an ulcer scar. She did not think that the Nexium was causing malabsorption!?!?!? She said that would only be the cause if I was taking iron supplements and had low numbers.????

[B]My GI wouldn't repeat this test in one years time unless my Hgb dropped and I had fresh bleeding or some other reason.[/B]

She might want to do a bone marrow biopsy.

She asked if I had any blood in my urine and I said no and also expressed surprise that no one ever did a urinalysis. She said that it wasn't really necessary because you would see the blood or the urine would be pinky. She then said that she could order a urinalysis but then she sent me on my way. i didn't remember until I was driving home. Maybe next week when I return.

[B]I would agree that you would see the blood. And to have that much loss you would definitely see it!![/B]

She is definitely testing my blood for high protein levels which are an indicator of multiple myeloma since both my parents were diagnosed within the last 10 years.

[B]Is this the same protein level that is tested on the CMP?? One of my docs did a test on me and it came back flagged High. He told me that it was the test for MM, but at my age it wouldn't be the case. I am 47 and he thought I would be too young for this and dismissed it. The Hematologist made a copy and said it wasn't high. My PCP said that it was the fact that I had a lot of fighting cells so I just put it out of my mind. Sounds like you are going to go through the 3rd degree on this note but that's good because you will get more answers.[/B]

She mentioned I could have tiny little tears in my blood vessels that might be causing the blood loss. there is a test called a bleeding scan that can be done to locate these tears. I can't remember exactly what she called this - but it was 3 letters - maybe amv??? She was explaining everything very quickly while I was on the examining table and my notebook was sitting on the chair so I couldn't write anything down. I'm so mad at myself that I didn't say stop - I need to take notes.

[B]My Mom just had an MRA the other day to test her veins. I wonder if this is what you are talking about. It was easy and they inject you like with an MRI. I've never heard of this before. Isn't it funny how none of my doctors said any of these things? There all so different.[/B]

Sorry to ramble and whine - I am so frustrated at myself for not remembering everything. I'm angry with the medical system that makes you crazy waiting for test results and appointments and I just want some answers.

[B]Your doctor sounds really good and she came up with a lot of things that I have not heard of or things that my doctors have not even considered. But when it comes to the PPI's I would ask the GI doc because it is his/her expertise much more than a Hematologist. If I have learned anything, it is that these doctors may know a lot about their profession but NOT near enough about other professions. At times it is almost scary the lack of knowledge.[/B]

[B]Keep your chin up and maybe you will get further answers next week. I think that she has many good ideas. I really hope that you get to the root of this. FLFLOWERGIRL:)[/B]

Thanks for letting me vent.[/QUOTE]
FLFLOWERGIRL - I'm so sorry that I didn't respond sooner to your very hekpful and encouraging message. Friday was a crazy day and I didn't have time to write back and yesterday was not a good day for me.

It began when I received a phone call at 10:30 from the hematologist!!! OMG I have never had a doctor call me on a Saturday. I immediately thought the worse - I mean why else would a doctor call you on a Saturday unless they needed to talk with you about a serious problem?!?!? Well it was not as bad as I thought but not so good either. She got more of my blood results and my Ferritin is still at a 5 so she wanted to start me oral iron. She does not have my iron or TIBC or Saturation yet but thought we should move forward.
My HGB went down to 11.4 from 11.6 but she wasn't too concerned about that. My MCH is still low at 25.

So she called in a prescription at CVS for Niferex 150 (also known as Feogen or Hematogen or Vitron-C). She though this would be a good iron because it has less GI side effects since I have GERD and IBS. Well when I went to pick it up, I got the shock of my life. My insurance which happens to be a very good plan did not cover it and a one month supply was $116. The pharmacist was not very optimistic that it would be covered even if I appealed. He said that he very rarely sees any insurance cover this med. He suggested that I ask the Doctor if I could use Ferrex instead. He said that it is somewhat mild for GI effects and his mother uses it. I did not buy it at first because I wanted to think about my options but I went back and picked it up first thing this morning. I decided it might take too long to deal with an appeal etc. etc. and I need to get some answers sooner rather than later to keep my sanity. The doctor told me to cancel my appointment this Friday and instead come any day to drop off my stool sample and do a urinalysis. Then she wants me to come back in 2 - 3 weeks to have my blood drawn and then see her the next day to determine if there is any improvement.

So I have taken one capsule! We'll see what happens. She did kind of allude to the fact that we might not find a reason why the levels are low just like you said. Geez that is so discouraging.

Well that is my sad tale of woe so far.:( I know it could be a lot worse and I do thank my lucky stars but it is still very discouraging and scary while waiting for all the results.

Thanks for listening!

P.S. Has anyone taken this Iron that I was prescribed????? Did your insurance cover it?





All times are GMT -7. The time now is 01:27 PM.





© 2021 MH Sub I, LLC dba Internet Brands. All rights reserved.
Do not copy or redistribute in any form!