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Old 08-01-2008, 03:53 PM   #1
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Unhappy could really use some advice...


I could really use some advice so I'm hoping someone can give me some...

I have been having signs of anemia for several years now but every time that my blood was drawn it was always "borderline normal". I had gastric bypass (weight loss surgery) almost 5 years ago and so it is not unheard of to be either anemic or to have low B12 levels. I have tried taking over the counter of both iron (ferrous sulfate) and B12(pills, sublingual, liquid) but the iron makes me extremely constipated and the B12 just didn't seem to work. On top of this I have a history of Asthma, allergies, migraines and also fibromyalgia so every time i have gone to the doctor my symptoms have been pushed off as something else. For example tired=fibro, shortness of breath = asthma, constant headaches = fibro, allergies or migraines, dizziness = allergies or medications I'm on, constant lung infections etc. = asthma & allergies and/or fibro. I also know that ice eating is a form of PICA which is associated solely with being low on iron...I have been eating at least a 7 lb. bag of ice each night for 3 years, on some days even 2, yet doctors have laughed in my face because they think it is funny and tell me its "in my head"!
Sorry to vent...so here is my real delima...

2 weeks ago after having my 2nd extreme pain attack of the intestinal area I went to the hospital via ambulance because I was afraid i had a blockage due to my weight loss surgery and just had not felt right in days. The pain did not seem to be a real problem except that I was "full of it" so to speak. While i was in the emergency room they did a CBC on me and found that my hemoglobin count was a 5 (normal is between 12 - 17 according to ER staff). Needless to say the ER team was highly concerned and ordered all kinds of tests to rule out internal bleeding including a CAT scan of my intestines (with the dye injected in me) and a scope of my stomach and intestinal opening to make sure I did not have a blockage or bleeding ulcer. I received 3 units of blood in the ER and was kept over night at the hospital. During this time I was talked to by something along the lines of 20 doctors as I'm always a good case study (its a teaching hospital) as they do not see people every day with these symptoms and having fibor/asthma and weight loss surgery etc. The doctors there and staff were wonderful. It was decided that there was no internal bleeding but more than likely this has been going on for some time and just took some time to get to this level and it was due to the weight loss surgery and just not having the portion of my intestines any longer that absorbs iron - in other words no matter how much leafy greens I eat etc. my body just doesn't absorb it. The discharge instructions were to follow up with my doctor and schedule some iron infusions. My hemoglobin level was a 9 when i left the hospital (still low but better).

So I went to my primary care doctor on Tuesday after discharge and he said to come back in a week and have my blood tested again and then get a B12 injection. He said he would get the results and then schedule the iron infusions.

So this Tuesday I got my blood drawn and got the results yesterday.
My hemoglobin was 9
My B12 was 210 (normal is 200 - 1100) so I am still going to get B12 shots for a number of months
I don't know the other numbers since I have not physically seen the results

When I spoke to the doctors assistant yesterday she did not mention the iron infusions so I asked her about them and she said she'd call me back. Today when she called back she said that the doctor said my iron levels were good/high (may be because of the transfusions last week) and becasue of this he is not going to schedule me for any iron infusions.

I'm concerned becasue my hemoglobin level is still quite low and I am still dizzy, my heart beating like its coming out of my chest when I go up stairs, I'm still having issues breathing, I'm still extremely tired etc. Even more so I'm concerned becasue I still am not able to absorb Iron on my own so am I just suppossed to wait until my blood level goes way down again and not know it until it gets really bad? I'm probably overreacting but then again I never thought i would have to have a blood transfusion and I have felt like total crap for over a year and a half and every doctor has just blown me off. Last fall I even had a nervous breakdown because I was so tired of being sick and doctors just telling me nothing was wrong with me. I was finally hopeful that I was finally going to get the care that I needed and maybe i would be able to regain my life back but now I'm just scared they are going to push me back off until i get really sick again.

Good news is I'm not eating near the amount of ice I was before.

I'm sorry for going on so long...I'm always long winded and unfortunately it's not a cut and dry case.

Thanks in advace,
Amanda

 
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Old 08-01-2008, 04:40 PM   #2
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Re: could really use some advice...

Amanda--I'm so sorry that you have been experiencing all this. I can sympathize with you because I went through %^&* last year myself. Nothing of course compared to the years of your endurance. You must be a very strong person. They would have brought me the straight jacket long ago.

I can share a couple of tid bits of knowledge with you from my own experience.

I also had PICA, mine too resolved as soon as I started getting iron. This is (((NOT))) in your head!! The difference in eating ice and PICA is that some people just like to chew it and enjoy it. For me, I took ice to the bath, store, always in the car. Glass after glass until my daughter finally told me that I was out of control. It was BAD. That is when I went to the net and read that it was a sign of anemia but for some crazy reason I didn't believe it. Hum......

My sister had GB and I can tell you so many people end up here and they have never even been told that they should be on B-12 shots, you guys need the loaded doses. This is for the rest of your life. You should look up symptoms of low B-12 they it may even be some of your other problems. Deficiency presents as Neuro symptoms similar to like MS at times.

Iron, this is another story. This is hard for many, many, of us. You already know that you don't absorb well or not at all. There is an iron that is especially designed for people in your situation. It was given to my sister by her Bariatric specialist. It is a RX and the name is Foltrin. The ingredients are iron, plus Vit-C, B-12 and IF intrinsic Factor. That is what you don't have in your stomach/pouch anymore. It's worth a trial to see if your body can in fact absorb it at all. Iron has to have acid to break down and absorb. If I were you, IMO, I would be asking for this RX from your doctor who probably knows nothing about it, I'm sorry to say. Regular iron will get you nowhere fast. If constipation is a problem you can add stool softeners to the mix.

Most people with GB go on to receive IV iron therapy from a Hematologist because you need to keep your ferritin as high as you can. Did you have a ferritin reading? This is your iron storage. Yours is probably at undetectable levels.

I would recommend seeing a Hematologist or a Bariatric specialist ASAP. You are now moderately anemic at a 9 Hgb. But, you were at the life threatening stage before. Your body can't keep going through this. So, you need a Specialist, Specialist right away. See what your PCP can arrange for you or do it for yourself. For you it's a matter of getting iron and B-12 then you will be a new person. I hope I have been able to help you a little. I wish you well. Keep us posted. FLFLOWERGIRL

 
Old 08-01-2008, 09:44 PM   #3
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Re: could really use some advice...

Thank you so much flowergirl for taking the time to read my post and writing so much wonderful information for me.
I had 1 B12 shot in the past and even though I felt it helped the primary doctor said it was probably just a pleceabo affect...what does it matter if it helped?
I sent my surgeon (weight loss surgoens) nurse an email for more advice as we have been communicating since I was checked out of the hospital. I loved the doctor in the hospital and am going to see if I can see her regurarily once she graduates fully.
Thanks again. I plan on researching further the info you gave to me as well as calling my doctors office again on monday!

Amanda

 
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