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    Old 10-16-2003, 03:35 PM   #1
    PaNik5717
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    Post Hematologists

    Can you tell me what tests hematologists run? What have yours looked for and/or found?

    My PCP thinks that my gyn problem may be something that should be evaluated by a hematologist. She tried to refer me once before and the local guy looked at my chart and said that I should go back to my gyn.
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    Old 10-16-2003, 05:32 PM   #2
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    I'm really more interested in advice about hematologists. I'm guessing the main concern would be leukemia, but I really know nothing.

    I thought I would mention, though, that my PCP has always had this notion that anemia can cause heavy uterine bleeding as well as the other way around. She seems to think that my bleeding gets heavier as my anemia gets worse, instead of the other way around. Kind of a chicken and egg thing, but I wonder if this is a supported idea in the medical field or where she got the theory from.
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    Old 10-16-2003, 05:58 PM   #3
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    Here's what I've found out as I went through the same process you are...my GP referred me to a hematalogist awhile ago, mostly for the IV iron, but also to make sure my bone marrow is working ok and that it isn't the cause of my anemia. The hematalogist gave me a couple rounds of IV iron and then ran a CBC about 5 weeks after the first IV to see where my red blood cell count, hgb, hct, etc, were after the iron. If your bone marrow isn't working properly, you won't be able to create new red blood cells, no matter how much iron they give you. My rbc went up a little, although not quite into the normal range. He also checked my reticulocyte count - which should be above normal if you're anemic since your bone marrow should be constanting making new red blood cells to make up for what it's missing. If the tests indicate that your bone marrow isn't responding as it should be, the hematalogist will probably do a bone marrow biopsy.
    My hematalogist told me that my bone marrow appears to be working fine, and sent me back to the GI doctor to find out where I'm losing the blood from. He wasn't too much help in finding out what's causing my anemia, but the IV's of iron have been helpful, so at least he's of some use to me Good luck!

     
    Old 10-17-2003, 01:19 PM   #4
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    I guess you're finding out that the cause of anemia can be pretty elusive. As for the heavy periods--my hematologist explained to me that iron plays a role in constriction of the blood vessels. If your body is very low in iron you tend to bleed heavier during your periods. I did notice mine were lighter after iron treatment when my ferritin levels were up. He also stated that this wouldn't extend my periods, just cause them to be heavier for the normal duration. I've read some of your other posts and it sounds like you've got a really difficult problem to diagnose. My periods were never that big a deal and they're ALWAYS on time exactly 27 days apart! I'm on the pill now to stop them and I'm lucky in that I respond well to it so I have no periods at all. I also think that there are problems of absorption of iron that aren't determinable. I've had all the GI tests checking for Celiac, Crohns, etc and all of them came back negative. BUT my iron levels never rise on their own and keep dwindling down. Good luck in your continuing quest to find an answer. I know how frustrating it must be for you.
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    Old 10-17-2003, 03:45 PM   #5
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    Thanks for your replies so far. I am copying this from another post. I usually hate it when people do that, but you guys are anemic, so I guess you can understand the fatigue and depression of it all.

    My D&C went fine, but my old bleeding pattern emerged about a day after the surgery. I waited a week and then I called the doc. She had me wait two more days so I called today. The bleeding is bothersome - especially when I bleed all over myself or someone else's couch - but the anemia is the worst. I have terrible headaches that get much worse for about twenty seconds after I stand up. I get dizzy if I am standing and talking at the same time - not enough oxygen to do both. I get up and cross the living room and I bump into the walls of the hallway. I don't know my numbers, but I know they are low.

    The doc called back. She is terribly frustrated and out of ideas. She talked to her senior partner about me and he would have done all the same things. So, he recommended that I get the depo provera shot and get it more often than every twelve weeks. The last doc I had wanted me to get an IUD or depo, but I know both are contraindicated if you have dysfunctional bleeding and I know that both can have HORRIBLE side effects. I had discussed those things with this doc when I first started with her and she agreed, but now she wants to give me the shot. She seemed to want me there today, but she said to come in on Monday if I am still bleeding since I am two hours away - I already have a follow-up for Wednesday, but I guess the lab results from the D&C must show nothing at all.

    I don't know what to do!!! My family is terribly worried about me and I have lost all quality of life. I would rather have a hysterectomy than the shot, but I don't know how to get one. My dad did talk to my PCP the other day and she wants me to see a hematologist. The one she told me to call can't see me until the end of November. My PCP already showed my file to a local hematologist and he told me to go back to my gyn who then gave me a script for sleeping pills. The only thing I can find that my PCP might be thinking of is leukemia. Could that possibly cause abnormal uterine bleeding? I know that abnormal bleeding is one symptom as well as anemia and many of the symptoms of anemia.

    I guess I am rambling now, but I am devastated at the idea of getting the shot and devastated that no one can think of anything else to do. I guess I am just plain devastated.

    Please let me know if you have any advice.
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    Old 10-17-2003, 05:13 PM   #6
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    Hi Nik, I'm so sorry to hear all that you're going through. I know we've both been posting on this board for awhile now, along with Quietstorm, so don't feel bad about "rambling on" at all! This is a great place to get advice, but also to vent a little to those who understand what you're going through!

    Why is your Primary considering leukemia as a possibility? I don't know much about that disease, but I would think that your white cells and other numbers would be off too (but I don't really know). Also, your hgb has gone up a little over this time right, even though it goes back down again. My understanding from my hematatologist was that if your numbers go up that indicates things are working ok, but your body just can't keep up with the blood loss. I don't really know anything about what the symptoms of leukemia would be, so if anemia and bleeding are among them, that would make sense to rule out that possibility. Have you posted on the leukemia board for more info?

    I'm sort of in a similar situation to you (not with the bleeding), but in that my doctors don't know what to do with me either. They've done every test known to man, given me IV's of iron, and my hgb keeps dropping. Through all this, my hemoglobin once got up to 12.0, but of course now it's back down again.

    Anyway, I figured I could live with IV's every now and then, even though it's frustrating not knowing what's causing all of this. But over the past couple of weeks, I've been throwing up every few days. It's not the flu, and I'm not pregnant (they ruled that out!), and it happens pretty randomly....not to mention that it's inconvenient and interferring with my work and studying (I'm just about to finish my Master's). So, they want to start repeating the GI tests again

    My boss at work has been pushing me to go to Stanford Med Center this entire time - and I've finally agreed to. The advice he gave me, and he has A LOT of experience with the medical field, is that it's best to go to a larger, nationally known medical center that is used to seeing cases that are "out of the ordinary". The regional medical facilities just don't know what do with people who don't fall somewhere near the textbook cause of anemia. Also, it's easier to get referrals to see a couple of specialists at the same time, and they work really well together being under the same roof. I'm going to start this process on Monday...I just can't take getting sick every week like this anymore - I know what you mean about losing your quality of life...I'm only 27 and I'm drinking Ensure half the time for meals!

    Well I've just gone on for quite a bit too...Good luck to you, and let us know what you find out next week!
    Adrienne

     
    Old 10-17-2003, 06:16 PM   #7
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    Ditto the above. Please don't stress about cancer! I'm pretty sure that would show up in your blood tests as well in the way the numbers arrange themselves. It crossed my mind for me as well. (Most of those GI, GYN, etc. tests are checking for cancer along with other "stuff.") Don't be afraid to ASK though. Tell them you're scared and mention to them that you've worried about such possibilities. At this point they should at least be able to tell you what it's NOT. You'll also feel better for having expressed your fears. I'm surprised that the GYNs haven't been more agressive about stopping the blood loss. I can totally understand why they won't agree to a hysterectomy. I really didn't want kids EVER and here I am the mother of three and I wouldn't trade 'em for the world. I can't even tell you what changed my mind (all three were PLANNED!) It IS really hard to be agressive in requesting treatment especially if you don't even know what to ask for!! Can you get a referral for a specialist from your specialist? What I mean is, can your current GYN call on help above her/him and get you in to see someone? This way you can usually get in fast. (My daughter has a really bizarre visual deficit and was sent to three levels of specialists I didn't even know existed--none of those hot shots figured it out either BUT they really tried and ENJOYED trying to solve the puzzle--they did not give up) By what I've gathered your location is a big hindrance. The only way you're ever going to get any better is to keep at 'em! Be a ROYAL PAIN IN THEIR BUTTS and DON'T apologize for it! It's YOUR life and they're being paid for their services--it's why they're there!!!
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    Old 10-17-2003, 07:25 PM   #8
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    Thanks so much for understanding. I have moved on to a bigger Lovelace health center in the closest city. There are others, but these people saw me the soonest. I was pleased to know that the gyn I am seeing discussed me with her boss. The local loon who offered me sleeping pills and sent me away to sleep in a puddle of my own blood never consulted with anyone.

    The reason I am thinking cancer is that it is one of the only routes not pursued yet. I have never seen an endocrinologist or a hematologist and my regular doc thinks hematology should be next. I did make some blood in the beginning, but I don't seem to be making much now. I am wondering if things slow down gradually. I was down to a hgb of 8 last winter two months before my bleeding started. I had gotten to 12, maybe higher, when I had my first epeisode of excessive bleeding. I don't know where I am now. They did a CBC before my surgery, but I didn't get the results.

    There may be two reasons that she knows of that seem like puzzle pieces in all of this. They are not related to the bleeding at all, but could be related to concerns about some greater disease. About a year and a half ago, I got some bizarre illness. They tested me for mono and hepatitis and never got any results. They tested me for everything. I had a fever of 104 for 12 days and my liver functioning was elevated. My liver got enlarged so I couldn't eat. It went away, but I never felt as strong as I was before that illness. Then, five months later, I broke my leg very mysteriously. I broke my tibia right by the growth line while I was flying a kite! It was a straight break on a BIG bone. It hadn't twisted and I didn't trip. I was just running with a kite on a soccer field and my leg broke. Four months later, I was carving ice and asked for a blood test and that is when I learned that I was anemic. Two months later I started to bleed.

    I think this new doc has been fairly aggressive in trying to stop the bleeding. She has followed the protocol for women my age, but it hasn't worked. She keeps putting me on higher doses of bcp's. Starting high and tapering off is standard, but it hasn't worked as soon as I start to taper and that has to be a sign of something wrong. So, she did the D&C and hysteroscopy and apparently found nothing. After my uterus was cleaned out, I continued to bleed through 10 - 12 overnight pads a day.

    I have always been in favor of adoption. I'm not that maternal yet and maybe I will be one day, but will I live that long if I hold on to my reproductive organs? Will they work after all of this? And, will I ever be able to leave my house long enough to date? Or get a job? The world is full of special kids that need love. And, the bible says that women without their own children are mothers to all children. I know I would have to get counseling before I could get surgery, but I am convinced the shot is a greater risk.

    Long story. I keep spreading it around in the hope that someone will see something significant.

    Thanks for sharing with me.
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    Old 10-20-2003, 03:29 PM   #9
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    Hi Amwood and QuietStorm,

    I was feeling so terrible this weekend, I almost lost the will to live. I think I picked up a virus that my nephew brought home from school and that made things worse. I am not feeling great, but better.

    I am still very discouraged that my gyn can't think of anything else to do. I didn't go to see her today. I decided that she will probably have more time to sit and go over things with me if I wait until our scheduled appointment. I am not going to get the shot and I stopped taking my bcp's this weekend. That has been one constant through all of this and there is a remote possibility that the pills exacerbate things. I don't know how long it will take to get over the withdrawal, which of course means bleeding.

    I'm not stessing about the cancer at all. I just can't believe that my body would turn on me like this for no reason and that there would be no cure. I only think the hematology thing is worth pursuing because it is something as opposed to nothing. I did post on the leukemia section. For both kinds of leukemia that I got responses on, anemia is a symptom and bleeding can be a symptom. White blood cells are only elevated for one. I did make blood before, but I'm not sure how well I am keeping up right now. I am still waiting for the darn nurse to call back. My PCP doesn't work every day so maybe the nurse left a message in a pile for her or something.

    Hey Adrienne, what are you studying? I can't imagine working on my Master's right now. I did my coursework a few years back and I don't think I could have done it with anemia and, now, throwing up. That is one of my least favorite feelings. I had no idea the IV iron could do that to you. I was afraid of IV's until I had my surgery and it wasn't all that bad. Now, I am thinking I could even go for a transfusion! Ick! It's funny, we're both the same age. You're on Ensure and I use Depends!

    Thanks to both of you for just being there and going through it, too. I know it is going to get worse as the weather gets worse. I hope to at least talk to my PCP before Wednesday and ask her to order some tests. I'd like to at least know my hgb because I haven't felt this bad yet so I am guessing something like 7. Then, off to the gyn on Wednesday. I am going to ask her to start the process of preparing me for a hysterectomy. I am guessing it is not quick and I will be able to get the other tests run and get the hormones out of my system by then. Then, if anything else turns up, I can cancel the hysterectomy. It would be sad to get one and not have the problem solved because they never got a reticulocyte count.

    OK, I'll quit for today!

    Nik
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    Old 10-20-2003, 03:58 PM   #10
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    Hi Nik, wow, I was just signing on to vent a little to you as well! I'm so sorry that you're not feeling any better - hopefully your doc will have more to offer on Wed. Your primary should be able to do a reticulocyte count when they do your labwork - mine's ordered it along with the CBC. That's definitely a test they should run at some point...probably should've done it already! My mom had a hsyterectomy ealier this year, and it's not a long process once the decision is made. But, it sounds like you're taking the right approach and doing this cautiously...it would be nice to know that they can tell you that the surgery would solve your problem!

    I've been trying to jump through all of the insurance hoops for a second opinion and it's driving me crazy! Everything seems to have finally been straightened out, but I've got to talk with my primary and she's out of the office until tomorrow morning. I've never gone through this process before and it's really intimidating - at least for me! My primary seems to work with the same GI docs all the time, and that's who would be doing the endoscopy again (he also did it in Feb). For some reason, I feel strange telling/asking my doctor about getting another opinion from a place like Stanford. Have you guys ever felt this way too? It's almost like I was taught not to question my doctor (I think by my parents), even though I know this isn't true....

    They're doing the GI testing again because I've been throwing up lately. I wasn't experiencing this earlier in the year, and it's not a result of the IV iron because I haven't had an IV in about a month. Actually, I've never had a reaction to the IV iron at all - it was probably the easiest thing out all the stuff I've had to do this year! I've tested positive for occult GI bleeding but they haven't been able to find the source, and now it seems like I'm starting to experience GI symptoms, instead of just being anemic and having hidden blood in my stools. So that's my story for the day...this is just so frustrating, and it seems like things should be taken care a lot faster than they are!!

    On another note - I'm working on my Master's in public policy and will be done in May. All of this medical/anemia stuff has made school a little challenging this year, but I'm so lucky to have amazing bosses at work who are really flexible and just great people! What did you study? I had to laugh when I read your line about Ensure and Depends....it's so true though, half the time I feel like I should just check myself into the local retirement community and call it a day! I really hope you're feeling better, and keep us posted!
    Quietstorm, anything going on with you? I know you have 3 kids so I'm sure they keep you busy! Have you seen your hematalogist lately? Take care,
    Adrienne

     
    Old 10-20-2003, 04:20 PM   #11
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    I feel exactly the same. The local docs are all connected by the local hospital. I had been seeing the same gyn for about 7 years and finally had him broken in (he had a little problem with not reviewing my chart and lecturing me about safe sex when I had been infected during a sexual assault). He had been so nice to me through the cervical stuff (which isn't resolved, yet) and the anemia. He gave me tons of free iron pills and free birth control and he gave me his son's phone number which lead to a new job. So, I still feel terrible about seeing someone else. I feel like I am cheating and I hope he doesn't notice that I am not coming back next month.

    But, I am also learning how i****ct the practice of medicince is. We really have to be involved and be proactive about it. Doctors simply can't keep up with it all and with us. Finding new leads and new doctors is essential if we want to get well. It just takes so much time and energy to do it. I have tons of time since I just sit here bleeding all day - afraid to get up and walk across the house because it hurts my head so much and it could be the time that I faint. It's the energy that is lacking. I think there was a woman on an oxygen tank here awhile back. I wonder how much that would help. The air is already thin way up here at 6500 feet.

    Public policy isn't too far from me. I studied psychology and political science in college. For my masters, I was in a social science program, but my research was in biopsych and philosophy. I just kinda snuck them in when they were cross-listed in the social sciences. It was only a one year program and I got what I wanted - things to read and people to discuss them with. Once I finished my research, I never wrote my thesis. Oops. Let's hope you do better...and with a lot more challenges.

    Nik

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    Old 10-21-2003, 01:52 PM   #12
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    I'm sorry to hear about your past problems in life...it's amazing how insensitive people can be sometimes. I know what you mean about feeling somewhat personally attached to your doctor. My primary has helped me through a lot over the past couple of years - I'm a recovering anorexic and have spent about 6 months at an inpatient treatment center. My doctor stood by me the entire time when I really believe most would've given up (before and after treatment). But, here I am today, back into life (well almost considering this anemia situation) and getting back on track. I really did feel uncomfortable questioning her opinion on who should do the next set of GI tests. But, I talked with her first thing this morning and it went great. She said she agreed a second opinion would be a good idea, and she didn't know of anyone in our immediate area that's better than my current GI doc. So we talked for awhile about the nearby larger facilities...Stanford, UCSF, and Cal Pacific in SF. She's calling around to Stanford and Cal Pacific and is going to get back with me on who she thinks would be the best to see. I am SO relieved...I really don't know what I would've done if she didn't agree with me on getting a second opinion!

    Nik, did you have an appointment today? Maybe being on oxygen now and then might actually help? Considering you're at altitude I can only imagine how tired you must be! I remember when I went skiing last winter (not knowing that it was that bad of an idea) I was so winded from walking up 4-5 steps in my ski boots...I thought I was extremely out of shape until my doctor told me what could've happened that day!

    I've started a little work on my thesis...hopefully I'll finish it in time. I've talked with some other people in my program who aren't planning on finishing their's right away. But, after I graduate I'm thinking about going on for my Ph.D. in public policy, so I'm going to try my best to finish by May...I'm actually headed to North Carolina in a couple of weeks to meet with some people at UNC - hopefully I'll at least have some of this anemia/GI stuff under control by then! Well, hang in there...I hope your docs have something new to offer you this week!

     
    Old 10-23-2003, 05:31 AM   #13
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    Hi Guys!
    Sounds like you're each doing a little better--at least making some headway in the medical arena. It took me a VERY long time to find physicians I could actually talk with which is why my anemia went on for soooo long. And, lets face it do you know ANY women who AREN'T tired? It's almost expected. It IS a LOT harder to get care in a small town. It can also be really uncomfortable. Everybody knows everybody and EVERYTHING about everybody!! I live in a large metropolitan area now so I'm surrounded by research facilities. The doctors here don't hesitate for a second to send you to a "higher authority."
    I've actually been doig pretty good. My blood levels, although low, aren't plunging as much as they were. My hematologist checks me out every 6-12 weeks. I haven't had to get any IV iron for almost a year now! I think my problem is a glitch in the system as opposed to any significant or worsening health issue. I just seem to have a really hard time getting iron--I don't think I lose significant amounts.
    As young as you two are you DO need to be really agressive about seeking the care that you need. If I were you Panik I'd probably want a hysterectomy too. It IS drastic only because of your age. BUT, it sounds like you've tried all of the options and weighed the consequences as well. If it does solve the problem it'll be worth it. There aren't any "good" options. Good luck to both of you. I check the board every once in a while to kind of check up.
    Robin
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    Old 10-23-2003, 02:14 PM   #14
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    Hi Robin and Adrienne,

    I went to the doc yesterday. We had a long discussion, almost heated, about my options. I want her to make sure everything has been checked. I know they have ruled some things out without testing me and I need to know why. I finally convinced her that the shot was not an option and she finally realized that I have never been on the regular provera. She wants to try that. I told her I had stopped my other pills because they have been a constant through all of this and could be part of the problem so she said I could wait through the week of withdrawal.

    She sent me out with some good news - my cervix looks healthy right now. Looks like I may have beat HPV. Then, she sent me off for a CBC and about ten tubes of blood disorder tests. I have wanted them done, but I didn't know they would take that much blood! Each drop is so precious. I wish someone would have ordered them three months ago when I was at 12. I was supposed to call her Monday for the results and to talk about the Provera, but she had a nurse call me because I am at a 6 now and they want me on the provera to make it stop now. I was hoping to stay away from the hormones to see what mine would do. I don't know how I will react to the progestin or how long it works. But I guess I will be happy if it stops it for even a few days. At least it is something new.

    They took the ten tubes and they did a bleed time on me. Interesting little test. I sat there longer than I had expected and bled all over the chair! (Oh, not from the tes, from my uterus.) The lab tech was so understanding. She let me change in their bathroom so that I didn't have to walk through the hospital wearing my red badge of courage.

    I also think I have developed diaper rash. I have to travel with a diaper bag, too, so that I have extra pads and clothes in case of an accident.

    Oh, and she would not talk hysterectomy at all!

    It is so nice to have you two. Thanks for readng, again.

    Nik

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    Old 10-23-2003, 03:58 PM   #15
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    Oh Nik, you're at a 6! What are they going to do about that, besides the hormones? Have they started talking to you about a tranfusion? Or maybe try the IV iron to see if that works better than the supplements? Wow, I hope you're doing ok and that you don't have to get up and do anything at all today, or anytime soon! My hemoglobin got to a 7.4 once and my doctor said that they don't transfuse people at that point, but that was something I should keep in mind if things didn't change with the IV infusions (this was just before I had started the IV iron). I remember feeling so exhausted when things got that low...and on top of my hgb being low, I was scheduled for the small bowel series test that day, and then I went to work, and then to class that night....I don't think I could do that again even if I tried (actually, I only vaguely remember most of that day)! I did talk with my doctor about transfusions though, since I don't think I could get one if I ever needed one (just a fear of mine). She said that there's really no set standard on exactly when to transfuse someone or not, it's all evaluated on an individual basis. She was a little worried about me since I had developed a heart murmer due to the anemia, and the lower my hgb gets, the more strain is put on my heart, and the worse the murmer gets. Has anyone ever mentioned this to you, or have they even checked that out? Considering you live at altitude I would look into it!

    I really hope they get things figured out for you soon...I can't even imagine going through what you are right now! I know, the grass is always greener on the other side and we're both anemic, but even though I hate throwing up I can at least make it to a bathroom and get on with my day....

    Well I'm about to leave work right now and go to class but I just wanted to see how you're doing. I just can't believe they're stuck right now on what to do...I hope the labwork they did today will at least give them a direction to head toward. I know what you mean about them drawing all that blood...one time after they had taken about 4-5 tubes I stood up and felt light-headed for awhile...they really should do those tests sparingly!! I just had labwork done this morning too, but they only took 2 tubes today! Well take care and take it EASY!
    Adrienne

     
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