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Hello All!
I apologize for whining but I just need to vent about my 3 month follow-up with my hematologist this morning.

First issue: My appointment was at 9:00 but when I got there my name wasn't on the list because the receptionist forgot to put me into the computer. Fortunately she had written it on my chart so she apologized and said she would explain to the doctor and squeeze me in.

Second Issue: doctor did a quick exam, then left and said she would return with bloodwork results. Soon she returned and said there was a delay. Finally returned with a printout and was all smiles.

I was not - the labs were incomplete - no ferritin, iron, Saturation, B12 - they take longer she said and she promised that she would call me later in the day with the results. You guessed it - no call.

This happened the last 2 times I saw her as well. I don't understand why they won't let you come in the day before to have your blood drawn so the results are all there for the doctor to discuss with you in the office instead of over the phone?

Third Issue: I'm really frustrated because she was all smiles with the CBC results and I am concerned about what she said. She was happy because my Hemoglobin and Hematocrit were normal and shows that I don’t have anemia. DUH! I reminded her that they’ve actually been normal every time since they discovered my ferritin was a 5 last July. Ironically the range on my lab results say that normal for Hemoglobin is 11- 15 and I keep reading everywhere that normal is 12. My results today were 12.9 which is better than 11.6 in July, 11.4 in November and 12.7 in January. My Hematocrit (range is 34 – 46) was 38.2 but previously it was 35.6, 37.2 and 38.8 in July, November and January.

Doctor then says since your H and H are good and show no anemia and you’ve been on iron supplements for 6 months, you don’t have to take anymore iron and you don’t need to see me for 6 months. I immediately corrected her and said but I’ve only been on the iron since November 20 which is only 5 months. I then reminded her that she said she wanted to see my ferritin get up to 50 and asked if she thought it would have improved to that when in January it was only a 12. She insisted that it was not necessary to take any more iron and that I would get enough in my food. Now I know I didn’t go to medical school and I don’t even have a degree in biology but this goes against all I have read here from you ladies and in other places. She said she was not concerned because I’m postmenopausal and have no bleeding.

I don’t get it. So tomorrow I will wait again for the phone to ring to see how much my ferritin improved.

Thanks for listening! I tried to explain this to someone at work and she couldn’t understand why I wasn’t happy not to take the iron pills anymore. Thank goodness I knew I could come here and vent to someone who would get it.
My hematologist called me today and my ferritin and iron levels and Saturation % were all up.

Here's the comparision from July 08 when I was told I had a problem to now after being on 300 mg poly iron since November 18.

Ferritin: July = 5, April = 40
Iron: (35- 170) July = 25, April = 55
%Saturation (20 - 55) July 5, April 16 (this is up but still not normal)

She said my B12 level was good as well as all others and will mail me a copy of the report. It was a quick conversation without time for any discussion other than she said reiterated what she said at the office vists yesterday that it was okay to stop the iron and see her in 6 months unless I have a problem.

I'm a bit confused and disappointed. From what I 've read here from you guys a 40 ferritin is not that great but she seems to think it is. I do have to admit that I've been feeling better than I did last winter and spring but what is to prevent my levels to fall again since we do not know what caused the drop in the first place? I had a colonoscopy and capsule endoscopy which were all clear and I am postmenopausal with no bleeding since my last period in May 2006. Celiac blood tests were negative. I do take 40 mg of Nexium twice a day to control my GERD and prevent erosive esophagitis from returning so maybe they are the problem.

Hematologist did suggest that perhaps I should ask my GI to do another upper endoscopy since I still experience reflux. She also expressed suprised that my GI also prescribed prescription Pepcid. She said why are you taking 2 of the same medicines? I said isn't one a PPI and the other an H2 blocker which from what I read are two different categories of drugs to treat upper digestive issues. She kind of agreed but I felt like she didn't really. (Duh? who went to med school?) :rolleyes:

I have not see my GI for an office visit since August when I was squeezed in to see her because of the low blood levels. I had a regular follow-up visit originally scheduled for the day before my c'scope but she cancelled it when I saw her in August. I then saw her in October for the c'scope and got a form letter with the results and got my capsule endoscopy results over the phone from the NP. I know it is my fault and I should have made an appointment because she's certainly not going to call me up and say "hey how are you doing Susie?" Wouldn't that be a hoot? :eek: Then I would be the one "looking like a deer in the headlights"!!! I needed a refill for my Nexium in January and called the office and it was done - I thought that might cause a phone call that I needed to come in and see the doctor but it didn't. So I guess I should call tomorrow although she probably won't have anything available for 3 months but I do want and need to see her. I'd like to have another upper endoscopy to check on the polyps in my stomach and intenstinal metaplasia seen on my Sept 07 scope which she said was nothing to worry about. I may have to tell a little white lie and exaggerate my symptoms to convince her however. :p

Oh well I do have a previously scheduled follow-up with my GP on April 29 so I guess I'll discuss the situation with him but he will probably defer to what the hematologist says.

Well, I am really whining now and I'm beginning to get bored re-reading my own comments so I will sign off for now before I bore you to tears.

I do appreciate your listening and suggestions. Thanks so much!
Susieeeeeeeeeeq!!!!!--:wave:Okay, I'm going to tell you what I think, not that I went to med school or anything like that either. I was thinking that I could apply for one of those online diplomas for $$$$ to place in my home office:o LOL.

Okay, the problem really sounds like 2, 40 Nexium daily:dizzy:. I'm sooooo serious. My mom has BE and she doesn't even take 2 daily. For one reason, I won't let her after what has happened to me. Could you imagine if ~I~ took 2 instead of the ~one~ that so called got me here with a 2 ferritin and 8.5 Hgb.

Through my search I have read that PPI's only decrease absorption up to 12-15 hrs, :confused: I think that's what I read. If you are taking 2 then you are around the clock malabsorbing to some extent anyway.

I would make that appointment with the GI doc. Ask his opinion regarding discontinuation of iron supplements at this point and future. Ask about the use of PPI's. Also, I think I suggested this a while ago, but I would try a different med that you only take once, if you feel like one Nexium wouldn't be enough. And.... I really understand this stuff, I have lived it for 9 yrs. now on meds. It's rough, I know. I have found such relief with Zegerid, I don't know if you have tried that or not but the Nexium stopped working for me. He never even suggested taking 2, I don't know why but my PCP did. It's worth a shot. I only ever took 2 if I was really ill. If your doc doesn't think that it is PPI related, please educate me. Then I would ask for the repeated Endo. That's the easy one. I have found that (I'm sure you know with your experience) each office visit with a specialist is different. This is how I found out that I had a different problem was because I went back a year later and said how hard it was to raise my ferritin and he knew immediately what was wrong. Best of luck to you. Let us know how everything goes. :cool: FLFG





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