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I finally saw a hematologist on November 20 and she did very thorough bloodwork. According to the letter she sent my PCP she wrote that "unfortunately in some patieints an obvious source of GI blood loss cannot be identified."

I am not anemic because my H and H were low but within normal ranges. I'll post my test results below.

I do have very bad GERD and have been taking Nexium and/or other PPI's for more than 4 years and they could be the problem according to what I have read and heard especially here from FlFlowergirl. I was tested for celiac/gluten and the blood test came back normal (but I have read that these tests are not always accurate) but I might still have malabsorption ???

The hematologist also wrote that it "typically takes at least 6 months to fully replenish iron stores and that I would need to continue on iron supplementation for at least 6 months."

She gave me a prescription for Niferex 150 to take 2 times a day. I paid $115 for a 30 day supply! It was not covered by my insurance because it is considered an OTC drug even though the pharmacy has to order it for you. I filed an appeal with the insurance company but they still refused even though the Hematologist thought this was a better iron supplement for me because it had Vitamin C in it for better absorption. So beginning in December I now take Ferrex 150 twice a day along with a Vitamin C tablet. The ferrex has B12 and Folic Acid and for some reason it is not considered an OTC and my insurance covers it.

I had a second blood test at the hematologist on January 7and my ferritin increased to 12. She does not want to see me or do another blood test until 3 months have passed - so I am in limbo until April 7 if the new iron is working as well.

sorry for the long post. I feel like I'm whining a bit and I guess I am.

[B]Ferritin (5-148) [/B]
[COLOR="RoyalBlue"]Aug = 5 (L)[/COLOR] Jan = 12
[B]Hematocrit (34-46)[/B]
[COLOR="RoyalBlue"]Aug = 35.6 [/COLOR] Jan = 38.8
[B]Hemoglobin (11.0-15.0) [/B]
[COLOR="royalblue"]Aug = 11.6 [/COLOR] Jan = 12.7
[B]Iron (35-170) [/B]
[COLOR="royalblue"]Aug = 25 [/COLOR]Jan = 51
[B]TIBC (250-450) [/B]
[COLOR="royalblue"]Aug = 469 (H) [/COLOR] Jan = 393
[B]% SAT (20-55)[/B]
[COLOR="royalblue"]Aug = 5 (L)[/COLOR] Jan = 12 (L)
[B]MCV (80-100) [/B]
[COLOR="royalblue"]Aug = 77 (L) [/COLOR] Jan = 83
[B]MCH (27-33) [/B]
[COLOR="royalblue"]Aug = 25 (L) [/COLOR] Jan = 27
[QUOTE=FLFLOWERGIRL;3899443]Susieq14--I hope you don't mind if I chime in here. I was wondering what you were up to.

[COLOR="RoyalBlue"]Hello FLFG!

It is always so nice to read your posts! And I sincerely mean that! I don't know how you find the time to respond to everyone with such helpful and thorough answers. We are truly lucky to have you on our side!!!:angel:
I try to jump on board to at least read the latest posts 4 or 5 times a week but sometimes I can't get here no matter how I try. And then when I do I often don't have much to contribute since I'm still learning and I worry that I might give incorrect info. [/COLOR]

The hematologist also wrote that it "typically takes at least 6 months to fully replenish iron stores and that I would need to continue on iron supplementation for at least 6 months."

Susieq14--That may be true for ~some~ (normal people), that aren't having malabsorption issues. That is what they recommend for everyone. My GI doc said, "You are married to iron," and you know what that means. I have tried the PPI's every other day, it only lasted 2 weeks. I don't know if that causes more damage or if it's okay. What are your thoughts? That is what my first GI said to me 8 yrs ago. I think it was because of the whole malabsorption thing, but I knew nothing back then.

[COLOR="royalblue"] I'm not sure what to think because my GI was pretty nonchalent with her opinion. I saw her in August immediately after the PCP told me my blood tests needed follow-up and I was able to get a squeezed in appointment at which time she told me to cancel my originally scheduled 3 month follow-up in October until this was resolved. I saw her in October for the colonscopy obviously but have not talked to her since. I had the capsule endoscopy and a nurse called me with the results.
Anyway I would worry about stopping the PPI's because I was told I had erosive esophagitis and needed to take them to heal it and prevent it from coming back. Were you ever told you had EE? At the time of my first upper endoscopy in Feb 05 I had bad heartburn and lots of upper GI distress but never lots of burning heartburn or reflux liquidy burps so I'd be afraid to stop them for fear of causing a more serious problem like Barretts. I do need to schedule a follow-up with my GI but I just keep putting it off. I want to discuss this malabsorption business and I really want another upper endoscopy. She found polyps in my stomach and I want to see if there are any changes. Also in the letter to my PCP, my hematologist wrote "since she has recurrent reflux symptoms it may warrant repeat endoscopy to rule out occult blood loss secondary to peptic ulcer disease. " [/COLOR]

IF-- this turns out to be your problem, then get ready to start whining like me. 2 years to get to a 58 ferritin. And then people like Audrey-B build up and then drop, how stressful. If I do that the whole planet will hear me scream!
[COLOR="royalblue"]I certainly hope you don't have to but if you do please feel free to whine as loud as you can!!!![/COLOR]

Susie, you may want to have a follow up (later, maybe 6 months -1yr) with your GI doc to go over your ferritin stores and malabsorption. I did this at the one year mark and that is when he changed his mind about my periods, (that was the first DX) to malabsorption. The minute he heard that I was 43 at the 1 yr mark, he knew. My hematologist said, that I was a hysterical woman and needed a "H." Imagine that.
[COLOR="royalblue"]Unfortunately I can imagine that - it is sad what we as patients have to deal with sometimes. I'm sorry he insulted you.[/COLOR].

Really it was very much both causes, I'm not so sure about the malabsorption, I don't know what to think about that. For me, somehow I think that it is related to the Hashimoto's, I may be wrong. Have you had your thyroid checked right? I'm sure I've asked you that already. Can you imagine if you had blood loss on top of this.

[COLOR="royalblue"]My TSH always is normal but on the very low side in my unprofessional opinion. The range is .35 - 5.50 and in May 07 it was .65 and in Dec 08 it was .41 No one has said it is a problem[/COLOR][/COLOR]

Your numbers look really good. Your ferritin looks like it is responding well too. You are definitely making headway. I hope you are doing well. FLFG[/QUOTE]

[COLOR="RoyalBlue"]Needless to say I'm very anxious for April 7 to arrive for my big blood test. I wish it could have been done sooner.
Again, thanks so much for chiming in! You take care! Susie [/COLOR]

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