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  • New here, seeing hematologist next week

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    Old 01-27-2009, 05:28 PM   #1
    nancyjo
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    New here, seeing hematologist next week

    Hi everyone--

    I have been anemic my entire adult life (I'm 48), and the situation is getting worse.

    Nine years ago, my constant fatigue was labeled "depression" (NOT me at all!). I was put on antidepressants and the dosage was raised whenever I complained of ongoing fatigue. I spent a number of years on various meds for depression and anxiety (huh, and all I really needed was a divorce), which led to a 60-pound weight gain.

    Four years ago, a wonderful internist really listened to me; he ran all sorts of tests and diagnosed me with pernicious anemia and iron deficiency anemia. I was put on b12 shots, but they made no difference at all. This doctor married and moved across the country, and from there I went on to have a string of docs who just didn't get it.

    Finally I have found another internist who actually listens to me. She put me on 325mg of iron three times a day for a couple of months, only to have my iron level drop to 20 from a "high" of 29. She sent me to a GI doc for upper/lower GIs; there is no evidence of a bleed, but they are concerned that I am not able to absorb iron or b12 (and who knows what else) ingested via food or supplements. It doesn't help that I HATE meat and rarely eat it!

    I see a hematologist at one of the top teaching hospitals in the country next week and my greatest hope is that she will have some answers for me. I am a single parent of two teenagers with a 60-mile daily commute...I am worn out! Like all of you, I have the usual symptoms: fatigue, muscle aches, extreme sensitivity to cold, insomnia, shortness of breath.

    The hematologist had to review my medical records before agreeing to see me, and I got a call from her assistant within two hours of them receiving my records, so again, I hope she can help me. Is there any chance they'll at least give me an iron shot the first day? Even if they did, wouldn't it take awhile for me to notice any difference? I think I have become accustomed to being tired all the time; I cannot wait to have more energy! My house and yard are a mess because I don't have the energy to do anything beyond working and making (an easy) dinner...then I'm too tired to even get up. It's SO frustrating, as all of you know.

    Thanks for taking the time to read this "novel" -- I appreciate any input/advice you can share with me!

    Cheers,
    nancyjo

     
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    Old 01-27-2009, 07:28 PM   #2
    FLFLOWERGIRL
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    Re: New here, seeing hematologist next week

    nancyjo--Sorry you have been having a problem for so long. I'm glad to hear that you are seeing a Hematologist soon. Hopefully, they will have better testing and answers for you.

    Iron replacement can treat general anemia but not PA. For PA as you know, you have to have B-12 shots for the rest of your life or oral replacement therapy. You also need a combination of folic acid along with the B-12 that you were receiving. I wonder if you were doing that. This may make a difference if you weren't. Just a guess here. Also the reason for not absorbing is a lack of IF intrinsic factor. They make a B-12 supplement with IF in it for absorption, and I wonder if this would work for you. At least there are a couple of things that you can discuss at your doctor's appointment, if you like. Also, you have to have very loaded doses in the beginning of B-12 and a frequent schedule. I wonder if they were prescribed right for you. This is an AI disease that can run in families too, do any other family members have this? Have you ever been tested for Celiac disease and H-Pylori? These are also possibilities. Best of luck to you. FLFLOWERGIRL

     
    Old 01-27-2009, 08:26 PM   #3
    nancyjo
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    Re: New here, seeing hematologist next week

    Thanks for the reply, FLFLOWERGIRL -- I appreciate it!

    I need to call Kaiser (my previous provider where all the IF, methylmalonic acid, etc. tests were run) to see about getting a copy of my labs. I doubt they can get them to me on such short notice, though I guess the hematologist will check all of that once I tell her a diagnosis of PA was made several years ago. My new doc (as good as she is) only tested my b12 level, but didn't look at the IF and/or size of the red blood cells (forget which test indicates that)...those and other factors were considered before the PA diagnosis was made. The doc that made that diagnosis also said I have malabsorption, but I don't know how he determined that. The more I type, the more I realize I need to get those records!

    I do remember that I only got one b12 shot per month, which as I mentioned didn't seem to help at all. Sure it boosted my serum level, but I suppose that's only like a band-aid if the other factors (such as folic acid) weren't being addressed. I was given straight b12 w/nothing else in it; I do remember that. If the b12 with folic acid and IF is available in a sublingual, maybe I could give that a try...any advice as to where to buy it? If one has malabsorption, I think sublinguals might be the ONLY chance of getting an oral preparation to work.

    I'm going to call my new doctor and request a copy of my labs so I can research them this weekend (I do legal research at my job, so it's kind of second nature). At least then I will be able to discuss my case intelligently with the hematologist, plus I'd really like to see exactly what was tested for and what my numbers were.

    I could swear I printed out all those Kaiser labs before my access to their website ended (when I changed jobs), but I haven't been able to find them yet. I still have a good friend who works there, so perhaps she can FAX them over to me.

    I beat myself up for the past several years (and my ex-husband was more than happy to get in on it); I told myself I was lazy because I'd let myself get so fat (I'd always been thin until I went on the psych meds). While I admit that being overweight DOES affect one's ability to do certain things, I have NEVER had problems running up stairs until recently...and I have asthma! From that, I can only conclude that the anemia is sapping my strength.

    I also wonder if the asthma is not exacerbated by the low iron levels...what are your thoughts? It stands to reason that if the red blood cells are responsible for transporting oxygen to the organs (lungs), then maybe I'm having increasing asthma trouble b/c of the anemia...make sense? Going a step further, I wonder just how much damage the anemia has caused to the asthma over the years...I just feel certain there is a correlation.

    My doctor can always tell when my iron level is low (huh, when isn't it???) b/c apparently I have a heart murmur that can be heard loudly when my iron is low. If my iron goes up, the murmur is less-pronounced.

    If any of you can advise me as to locating sublingual (or even injectible) items online, I'm happy to consider anything that might help. The doctor I am seeing is the main "anemia doctor" at the Winship Cancer Institute at Emory University, so I have great hope in her ability to help me get better!! I am looking forward to our appt. next Wednesday, though I know it means parting with even more blood!

    BTW, I did not mention earlier that my internist put me on a 90-day birth control pill (for hormone regulation; no strength for sex, lol) in an effort to minimize bleeding. The GI doc said only having 4 periods a year CAN help rebuild my iron stores, but that it would be a slow process. Like any of us who have been exhausted for TOO LONG, I'm hoping for some fairly immediate relief!

    I was reading a book I have about asthma last night, wherein the author states that DAILY shots of b12 for two weeks can help an asthmatic tremendously. Now I guess I should look into getting injectible b12 with folic acid and possibly IF online so I can give myself the shots...oh joy.

    Thanks again for any info you can offer!

    Cheers,
    nancyjo

     
    Old 01-28-2009, 10:18 AM   #4
    FLFLOWERGIRL
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    Re: New here, seeing hematologist next week

    Quote:
    Originally Posted by nancyjo View Post



    The doc that made that diagnosis also said I have malabsorption, but I don't know how he determined that. The more I type, the more I realize I need to get those records!

    PA is considered a malabsorption syndrome. B-12 can last 2-5 yrs with malabsorption going on. I suppose the IF test was the determination.

    I do remember that I only got one b12 shot per month, which as I mentioned didn't seem to help at all. Sure it boosted my serum level, but I suppose that's only like a band-aid if the other factors (such as folic acid) weren't being addressed. I was given straight b12 w/nothing else in it; I do remember that. If the b12 with folic acid and IF is available in a sublingual, maybe I could give that a try...any advice as to where to buy it? If one has malabsorption, I think sublinguals might be the ONLY chance of getting an oral preparation to work.

    In this case the malabsorption is from lack of IF, if replaced with oral supplement, you may be able to absorb it. However, it is very questionable.
    I would wait to see what the Hematologist has to say. They will also know more about supplements that would be right for you.

    The supplement that I was telling you about is, Foltrin (brand name), it has Vit-C, Iron and B-12 with IF for absorption. Other names listed are Contrin, Fergon Plus and Trinsi com. This is a script I think.

    Regarding the B-12 IM's, it my understanding that they should be given along with ORAL Folic acid. It is not in the IM with B-12.

    I have read that a typical protocol for B-12 IM's is 1 mg every day or every other day 5-7 X's, then once a week for 4 wks, then once a month for life.
    Hydroxocobamin Verses Cyano form of B-12 is preferred, although, many docs don't give this form. Methyl form of SB L B12 is available from Jarrow and is said to be a good supplement.



    I also wonder if the asthma is not exacerbated by the low iron levels...what are your thoughts? It stands to reason that if the red blood cells are responsible for transporting oxygen to the organs (lungs), then maybe I'm having increasing asthma trouble b/c of the anemia...make sense?
    I agree.

    The GI doc said only having 4 periods a year CAN help rebuild my iron stores, but that it would be a slow process.
    Just from my experience, I think that this is still too much blood loss if you are having problems with anemia/low ferritin. All blood loss needs to be addressed until it is minimal at least. A slow process is an understatement IMO, for what that's worth. FLFLOWERGIRL.

    nancyjo

     
    Old 01-29-2009, 06:46 AM   #5
    nancyjo
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    Re: New here, seeing hematologist next week

    Thanks again, FLFLOWERGIRL!

    I was able to get a copy of my old medical records yesterday and am not sure why the iron issue wasn't taken more seriously then, based on the numbers. For example:

    Iron: <33 - low
    Iron sat: <7 - low
    Transferrin: >391 - high
    TIBC: 489 - 515
    RBC: <4.29 - low
    Hgb: <10.5 - low
    Hematocrit: <32.0 - low
    MCV: <79.5 - low
    MCH: <26.7 - low
    MCHC: <32.4 - low
    RDW: >16.4 - high

    I think some of the last few tests listed are also considered when making a diagnosis of PA, but I'm sure the hematologist will test for all of the above and plenty more! Oddly enough, the printout I got doesn't list the IF and methylmalonic acid tests, which I could've sworn he used in the PA diagnosis. Again, I'm sure next week will "tell the tale".

    Like everyone else with anemia, I just want to feel better; as it gets harder and harder to get through each day, I get more and more discouraged. Being a very upbeat person, that really bothers me.

    Thanks very much,
    nancyjo

     
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