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[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]
StephRabin--Thoses were some crazy prices. I too would have turned around and left!

Susieq14--Sorry that you were having a bad day. Yes, it is always scary when the docs call you at home. That is how I found out that I had a 2 ferritin, my Endo called me and said, "It's not an emergency, but you need to find out why." Doesn't that sound familar?

Regarding the iron, this is the type that I have been taking for 2 years. My first iron was Ferris Sulfate which sent me to the ER. The Poly Iron 150 is the ~Generic~ which also has Vit-C in it, I took 2X 300 mgs daily for the first year and now 1 X 150mgs daily [email protected]!! The cost is just under $30.00 (I think $27.99 something like that) for 100 and is well worth it! I can even take it on an empty stomach and is extremely easy on the GI tract. It is also OTC, forgive me if I have told you all this already. You have to ask for it at the pharmacy but it is available script or no script. Sometimes they have to order it in. Insurance does NOT cover this either. It is so worth it if you have problems as we do. I get mine at Walgreens Pharmacy and Wal-Mt. but they had to order it for me there. There is another Poly Iron Forte 150 it has B-12 also added, but this is not the one I get. If you do try it be sure to get the right one in orange and brown caps. And.... Ferrix, I have no idea how much iron you are getting and you need a high dose. What were you prescribed?

The Poly is really 150mgs of elemental iron. The BRAND names that I know of for this are; Fe-Tinic 150, Hytinic, Niferex and Nu Iron 150. I have never heard of the names that you said other than the Niferex BRAND name. Poly iron is a Polysaccharide -Iron Complex elemental iron. The good thing about this iron is that it is meant for long term use which other irons can be dangerous to take over a long period of time, free radicals and such. This iron is meant for long term use. Anyway, for what it's worth, I love it. I feel like it saved me.

I can tell you from your ferritin that your Iron Panel results are going to be low as well most likely so be prepared not to be too upset. Your Hgb looks pretty good. The iron will bring it back up soon enough. It took me 2 months the first time I took iron to get from 8.5 hgb to 12.9 I think it was. The I got realy sick and couldn't take it. When you saturate the system with iron and raise the Hgb to normal levels that is when the ferritin begins to store. Tomorrow will be a better day!:) FLFLOWERGIRL:)





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