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reginamatthew 06-24-2003 09:31 AM

Nothing found again except severe anemia
Well I have been anemic since 8. My level is usually around 8 and my Ferritan is only 1. I have started going through test and no one can find a reason. They just did a Endoscopy and Colonoscopy yesterday which showed nothing. He took a biopsy to rule out Celiac Disease but thought the chances were slim. He contributes it to heavey periods but my level is always low even when not on it and I don't feel like I bleed that heavey. One Dr suggested seeing a Hematologist and another a Hysterectomy (I am only 30 and I have one child but would like one more). I am so fusterated. I am always weak and it has been causing swelling and enlargement of my heart lately. What should I do? I don't want to be sick anymore and yet I am so tired of seeing so many Dr's who find nothing. Any recommendations?

QuietStorm4000 06-25-2003 06:36 AM

I've got a similar situation--had all the tests with NO answers. Why not consult a hematologist? It couldn't hurt (except the needles!) Just try and find one with a tad more personality than mine!! REALLY-ask around and find a doctor you can talk with and who will LISTEN.
You might want to ask about going on a continuous dosage of birth control pills to stop your periods altogether. Mine weren't heavy either but since I can't seem to absorb and store iron I couldn't afford to lose any. It shouldn't impair your future fertility if you want more kids.
I get periodic intraveinous infusions of iron which does help. They're a pain in the arm but that's about it.

amwood 07-14-2003 10:08 PM

It sounds like we're all in the same boat - I've had every GI test done and I've been referred to a hematologist. The hematologist didn't have much to offer...he ruled out any problems with my bone marrown and gave me 3 iron infusions. The iron infusions have helped with the anemia, but my levels continue to go up and down since they haven't found out what's causing the anemia. This is a frustrating process, and I've been told by my co-workers to head to a nationally-known med center to be evaluated. A couple of my co-workers have had some not-so-common medical problems and weren't properly diagnosed until they went to a national/research based institution. Definitely worth looking into if you've exhausted all other options...good luck...I'm still looking for an answer too....

reginamatthew 07-15-2003 09:14 AM

I wish you luck too! It is tiresome just going to all the different Doctor's. They son't seem to have much to offer or even seem like it is a problem. My Endoscopy and Colonscopy came back fine so he recommended a hysterectomy. I am 30 and will not do that. I know there has to be more options. My Family Dr has not even called me in to dicuss the test results and the next step. I feel like Ihave to push them. I am so tired and I am gaining weight and ave no energy I want something done. I know 8 is low and so is a Ferritan of 1. Isn't that important? Good luck!

amwood 07-15-2003 11:11 AM

Yes, 8 is a low number for is at about 9 right now, and I'm a little better off than you with 2 ferriten stores compared to your 1 :) We're close in age (I'm 27) and no one has even suggested a hysterectomy to me at all! I've tested positive several times for hidden blood in my stool so that's when they began with the GI testing. I had a colonoscopy and endoscopy a few months ago, and since then I've had a capsule endoscopy, small bowel series, and a nuclear medicine study done. They haven't found anything, although the capsule test did show something, but it was inconclusive so they've kept on looking. I'm really lucky - I've got a great family doctor who has been on top of this since it all began. I just want you to know that are several tests that can be done in addition to the colonoscopy and endoscopy you've already had. I would look around for a good GI doctor or find a general practitioner who will work closely with you...that has helped me so much throughout this. Given your lab results, this isn't something that should just be put off by your doctor...and I know how horrible it is to feel tired ALL THE TIME! I've been able to get some energy back with the iron infusions, but my iron will keep going up and down until they find the cause. It's amazing how medicine is really just one big guessing game....

reginamatthew 07-16-2003 07:41 AM

We are in the same boat. My stool test all came back negative though. No one has even suggested iron transfusions for me. I have read alot about them on this site and I think mine is low enough that I someone would of suggested that ny now. Some times I almost feel like a hypochondriac.

QuietStorm4000 07-16-2003 08:38 AM

I guess that's why they call it the "practice" of medicine!!! I'm a bit better off than you two with a Ferritin score of 3. Lately my Hgl and Hct scores have been holding and my hematologist has NO idea why!
Sometimes there aren't any answers. At least if they've ruled out the "big stuff" you can relax a little. One of the most important things you can do is to find a group of caring professionals who will LISTEN. THIS is the most difficult task of all!!! It took me a while (I'm 43) but I've now got some keepers!

amwood 07-16-2003 10:47 AM

I'll second that - I also feel like a hypochondriac with all of this stuff too! If not for my hgb, hct, and all other iron-related numbers being out of range, I would really be questioning my own sanity right now! Regina, I would say that your numbers definitely are low enough for an iron infusion...of course, I'm not a doctor, but yours are lower than mine and I've had 3 infusions so far! I would call your doctor and ask about the doesn't sound like your doctor will take the lead on this, and the infusions will help with your energy level. I don't know much iron shots, but from what I understand the infusions (given by IV) cause fewer reactions than the shots and seem to be a better way to go. The hematologist I saw was the one that ordered the infusions, and they can usually do them right there in the office. Believe me, the couple of hours it takes to get the IV will be well worth your time...I didn't realize how tired I had been until I started getting some energy back. And, throughout all of this, it has helped that my primary care doctor listens, is sympathetic, and proactive on finding a solution...I encourage you again to keep looking for a doctor that will work with you and take some initiative in solving this problem. Good luck, and let me know if you look further into the iron infusions!

amwood 07-16-2003 10:50 AM

One more thing...quietstorm - has anyone figured out why your iron is so low? How long has this been going for you? Have you received iron infusions also? If so, how long did they last for you? Thanks :)

[This message has been edited by amwood (edited 07-16-2003).]

QuietStorm4000 07-17-2003 04:32 AM

Nope, amwood, so far nothing upon which to blame my low iron. All the usual tests came back negative. I think I've always had this problem but up until a few years ago I refused to see a doctor about it. I've always been a real chicken when it comes to doctors. One of my earliest memories is of getting lost in a large department store on PURPOSE so my mom couldn't get me to the dr!!! BUT, I finally got really sick and tired of being sick and tired!! I guess you all can relate to that. After a 5 MONTH bout with pneumonia and a total energy crash at the gym I figured it was finally time to buck up and brave the white coat! I've been seeing the hematologist for almost 3 years now. I've had 1 infusion of Infed (which knocked me on my butt) and 3 rounds (set of 8 IVs) of Ferrlecit. I never manage to hold onto it for very long but during the infusion cycles and for a month or so after I feel pretty kickin'! My Hgl scores will shoot up to 13-14 and I can go running again. Lately I seem to have entered a holding pattern and the dr. has NO idea why! My iron count is still an embarrassment but my Hgl and Hct scores are quite respectable. Who knows?!! [img][/img]

reginamatthew 07-17-2003 12:22 PM

I hope this does don't seem too pushy but I did it! I am so tired of feeling like this so I made an appoitment with an Hematologist myself. My Doctor had stated if the Colonscopy and evrything came back ok that would be the next move. Of course I have not even heard from her and the Doctor that performed them told me weeks ago they were ok. I hate to keep going back to her for her to refer me. I contacted the office and my insurance does not require a referral so I made the appointment myself. I hope the Hematogist is ok with that. Ugg guess I am a little desperate!

amwood 07-17-2003 01:40 PM

Yay! Good for you! And it's NOT too pushy at's up to each of us to be our own advocate for our health. I hope things go ok - when is your appointment? I've had three infusions of infed so far, and I just had my hgb checked again today and it's starting to go back down again. I usually have a good week or two where I'm able to get out running/to the gym also, but I didn't even really get to do that this time. It's frustrating, but I've got a great doctor who is sympathetic - she actually gave me a hug before I left her office today, knowing how frustrated I am with all of this. Good luck to you Regina, and let us know how things go... :)

reginamatthew 07-17-2003 01:59 PM

Thank you, I was a little nervous about taking the step myself. My appointment is next Tuesday the 22nd in the afternoon. I will let ya'll know how it goes. I called my PCP and requested all labs and test be forward to the Hematologist (hope that gets done). Is there anything else I should do? Thanks for your support an dgood luck to you hope you are able to get back to the gym soon!

amwood 07-17-2003 03:53 PM

I don't think there's anything else you'll need to do. The hematologist will probably run his own lab tests for his records, since they all seem to like to repeat these things :) Hopefully this will help boost your energy level, and will be a step in the right direction for figuring out what's causing this for you. I've been so relieved to see that others are in the same position as I am with this. Before I came on this board I had never heard of anyone with the same type of problem that I've got. Of course, don't get me wrong, I hope we ALL can get the answers and treatment we need, but it's nice to talk with people who understand my frustrations!

Quietstorm, I noticed you had one infed treatment and then had Ferrlecit...what's the difference between the two?

QuietStorm4000 07-18-2003 05:17 AM

There's not much difference between the Infed and the Ferrlecit. I had a really bad reaction to the Infed and the nurse had to yank me out of it. With the Infed you can get 500mg of iron in one sitting. The Ferrlecit is only 125mg per infusion so it's usually administered in sets of 8 (1/week) for a total of 1000mg. But I seem to be tolerating that well. I just don't hold on to that for long either!! There's another infusion drug I just found on the internet called, I think, Venofer.
I am also SOOOOO glad to find some others in the same boat. Think the Titanic!! It's a sink or swim situation! I really thought it was only me!!
To Reginna--It was really SMART to make your own appt.!! Only you know how you feel and the dr.s need to LISTEN. So many just blow you off! If you don't like this dude don't hesitate for a second to change to another!! BUT, ask around and see who others use and LIKE. I really should have changed mine but it is such a hassel! Mine is a good dr. BUT not a good listener. It's taken us a long time to build up some sort of working relationship. BUT, his nursing staff is the BEST and they're the ones I have to spend the most time with anyway.

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