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Old 05-16-2011, 11:58 AM   #1
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Severe, Persistent Anemia & Fibroids

I was diagnosed with very severe anemia about 3-4 years ago inadvertently via a blood test. Within a year I was also diagnosed with fibroids. (i didn't have insurance for a long time so it wasn't previously plus it was not "feelable" for the MDs during the annual).

Anyhow...i had 3 prominent submucosal fibroids, which i had a myomectomy to get removed, successfully i was told. i also had cluster fibroids in other areas but was told they weren't a problem. Always had very "heavy" menstrual periods since i was a teen. never realized it was considered "heavy". It got so bad that when i had the submucosal fibroids I bled for 10 days every month (vs 7 being my norm). The Fibroids specialist told me those fibroids were the culprits for my *heavy* bleeding and the severe pain (adeyomyosis SP?) was for the mother of pains i get. After the surgery didn't work miracles for me, but it put me back to 7 days.

anyhow, it's been 2 yrs and my reg. MD is perplexed why (so am I!) why my numbers are still ridiculously low (iron, hemo,). After my surgery she told me i dind' tneed to monitor them so at the last physical i have been comparing the #s from the past 3 yrs and it appears my numbers seem the same b4 my fibroids surgery, which is surprising. I want to also know if something else could be causing me problems.

How I feel: i feel depressed all the time b/c i'm so fatigued and weak for the past years. I wasn't an athlete nor did i enjoy exericse. But i did and used to be able to do regular walks in the park, climb stairs for exercise. But the past years one flight of stairs was enough to get me super winded. I got a bike but even biking on flat terrain wears me out. I get so winded and try to catch my breath, i feel like i could past out, which further gets me stressed out. It's definitely not normal, as anemia is a common thing but I dont see it affect people the way it does to me?

has anyone had iron deficient anemia caused by severe monthly bleedings and had the fibroids removed ? Care to share your story with me?

So the MD sent me to the hospital again for a sonogram to see if the fibroids grew back. The submucosal fibroids that were removed from surgery didn't grow back, but the others did. Are there other tests to rule out potentially other causes ?

 
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Old 05-16-2011, 12:53 PM   #2
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Re: Severe, Persistent Anemia & Fibroids

Oh I will reply in a bit - I have to run out and pick up my son... be back in a jiffy, just wanted to make sure I was 'subscribed' to this post, to remind me that I wanted to answer you!

Michelle

 
Old 05-16-2011, 01:52 PM   #3
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Re: Severe, Persistent Anemia & Fibroids

"I was diagnosed with very severe anemia about 3-4 years ago inadvertently via a blood test. Within a year I was also diagnosed with fibroids. (i didn't have insurance for a long time so it wasn't previously plus it was not "feelable" for the MDs during the annual)."
Oh my goodness 3 things we have in common already! My anemia, also severe (what are your levels? I'll post mine below) was found inadvertently too - I thought I had Lymes Disease, had arthritis all winter long. Within a week though they found my one, big, fibroid. My insurance isn't that great but it's all we have been able to afford for the last couple of years, so I've pretty much avoided going to the doctor - I'm never really sick anyway (or at least I didn't think I was sick!)

Anyhow...i had 3 prominent submucosal fibroids, which i had a myomectomy to get removed, successfully i was told. i also had cluster fibroids in other areas but was told they weren't a problem. Always had very "heavy" menstrual periods since i was a teen. never realized it was considered "heavy". It got so bad that when i had the submucosal fibroids I bled for 10 days every month (vs 7 being my norm). The Fibroids specialist told me those fibroids were the culprits for my *heavy* bleeding and the severe pain (adeyomyosis SP?) was for the mother of pains i get. After the surgery didn't work miracles for me, but it put me back to 7 days.
More in common...my periods have been heavy for years. My average periods last 10 days, some lately have been 15 days...

anyhow, it's been 2 yrs and my reg. MD is perplexed why (so am I!) why my numbers are still ridiculously low (iron, hemo,). After my surgery she told me i dind' tneed to monitor them so at the last physical i have been comparing the #s from the past 3 yrs and it appears my numbers seem the same b4 my fibroids surgery, which is surprising. I want to also know if something else could be causing me problems.
What are you taking, how many mg of iron did your doctor put you on? I hope they didn't expect your levels to go up without the help of iron... also, I hope you have a good Gynecologist that you're working on with this gynecological problem and not a general practitioner. My Gynecologist explained to me right away that this is a gynecological problem and general practitioners are trained to work with children, men, women, anybody and all kinds of general ailments like coughs, colds, cuts, ear-aches but they are not specialists and they are not gynecologists, so it's a good thing my GP referred me to more than one specialist in my case... If you're not working closely with one, I suggest you get one. Also, I think you should be working with a hematologist for your anemia problems. These specialists in my little world are all working together as a team right now to help me.

How I feel: i feel depressed all the time b/c i'm so fatigued and weak for the past years. I wasn't an athlete nor did i enjoy exericse. But i did and used to be able to do regular walks in the park, climb stairs for exercise. But the past years one flight of stairs was enough to get me super winded. I got a bike but even biking on flat terrain wears me out. I get so winded and try to catch my breath, i feel like i could past out, which further gets me stressed out. It's definitely not normal, as anemia is a common thing but I dont see it affect people the way it does to me?
Gosh you sound like me, I don't get depressed 'too' much, its not in my nature, but I wasn't an athlete either nor do I exercise other than doing crunches on the floor and leg lifts to tighten my tummy and I do regular walks in my neighborhood, sometimes multiple times a day. In recent years I'm just like you, I'm so winded just from climbing up to my bedroom, then add a load of laundry to that climb and I'm ready to pass out I've felt soooo bad about myself thinking "how did I let myself get so out of shape?" when all along it was my blood, it wasn't me being lazy!

has anyone had iron deficient anemia caused by severe monthly bleedings and had the fibroids removed ? Care to share your story
So I'm about to have a hysterectomy in about 3 weeks... as soon as my gynecologist could get me in...this surprised the doctor I have to tell you, he thought I had fibroids and he thought he'd be able to take care of them in the office... said something like your doctor, like 'it'll be a breeze' or to that effect anyway... BUT....he couldn't feel them/it. The sono-hystogram revealed one 10cm fibroid, the size of a large, full term baby's head. So when I asked him if he'd still be able to take it out in the office he said "oh, nooooo, you're going to need a hysterectomy, this is much much larger than I anticipated" Amazing that it couldn't be reached, seen or felt with a regular pelvic exam.


So the MD sent me to the hospital again for a sonogram to see if the fibroids grew back. The submucosal fibroids that were removed from surgery didn't grow back, but the others did. Are there other tests to rule out potentially other causes ?[/QUOTE]I don't know the answer to that - but I still want to know if you've been on iron... and if you are still working with your regular doctor or it you're dealing with your gynecologist on this issue... especially now that they are coming back. My sister-in-law had them removed twice and finally they did a hysto for her. I never had one before this - well, if i did, I never went to the doctor in 10 yrs so I wouldn't know now...oh, my hemoglobin is a 6.9, ferritin 3, had 5th round of blood-work done today to see if the iron is working after 10 days... how about you?

Looking forward to your answers!

Michelle

Last edited by teri579; 05-16-2011 at 01:55 PM.

 
Old 05-16-2011, 02:00 PM   #4
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Re: Severe, Persistent Anemia & Fibroids

Michelle...I appreciate your answers too...even though I'm not experiencing much of the same as either of you. I was wondering for awhile too why I would get so winded going up the steps when I walk all the time! it didn't make sense. it's better now that I'm taking the supplement.

I hope the two of you feel better soon!

 
Old 05-16-2011, 02:24 PM   #5
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Re: Severe, Persistent Anemia & Fibroids

emmerrube: Hi there! Isn't it nice to know that we aren't just lazy and therefore out of shape? After only 10 days I AM feeling amazingly better! I am NOT winded as of just yesterday after climbing the stairs anymore! I might add that my GP put me on pre-natal vitamins before I could get in to see my gynecologist and hematologist and I felt slightly better after just a few days even with the prenatal vitamins... then the hemotologist started me on the iron, had me work up to 3 X/day of the 325 Farrous Sulfate (but continue with the prenatal vitamins too only because I thought they made me feel better). Today I had my bloodwork done again and I am so hopeful that something must have gone up because I feel so good. I know it's too soon for my hemoglobin to go up (after all, it takes 120 days for your body to make new blood cells, hatch and release them into your system, right?), but maybe my iron or my ferritin went up? I'm hopeful!

My first warning sign should have been last November when my family did our annual (well, semi-annual it's been lately) climb up a mountain up in NH. I could not believe it. I thought I was 120 yrs old! The climbing is the worst isn't it? Talk about burning thighs... I could NOT breath, had to keep sitting on a rock to catch my breath. My kids, ran way ahead and got to the top in no time, along with my brother and his wife (who happens to be a marathon runner)... my Dad blew me away... my husband stayed by me and kept cheering me on saying "come on honey you can do it"... now he feels like a complete heel... now that we've found out what's going on inside of me... he's saying "you could have died up there on that mountain and I kept telling you to keep climbing!"... I felt like such a loser - vowed I'd never do it again, kept thinking my marathon brother and sister-in-laws must think I'm so lazy and out of shape... Funny, now my husband thinks I'm the type of person that wants to prove that I can do this again, like after I'm all better. He's such a 'guy' isn't he? I told him I really don't have any desire to ever do it again after last year - even after I get better - don't feel like I have anything to prove to anyone. I DO HOWEVER want to get back in shape again - look SO forward to my 2X/day walks in the summer months, but we'll have to see how fast I recover from my hysto

Looking forward to following your story too!

Michelle

 
Old 05-16-2011, 07:21 PM   #6
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Re: Severe, Persistent Anemia & Fibroids

Thank you ladies, for sharing. It's so comforting to at least receive support from you ladies. Before my fibroids surgery 2 years ago i desperately was seeking for a forum to which I could find and share testimonials on the myomectomy I was to receive. There was a super old forum that people never returned to after their surgery to put updates. Anyway, so glad I found this site.

No, I don't see a gyne for the anemia. But i was actually thinking about that a couple of wks ago while discussing it with my friend about my desperateness to get answers. I even went as far as thinking do i need to see a blood specialist? So now that MJINTERIROS suggested that I will get right to it. I have been reading alot of articles online, but not in specific medical journals on fibroids and anemia. I have an appt Thurs to see the reg. MD again to "discuss" the results of last week's sonogram. I have Qs written for her and plan to at the time as for a referral to a blood specialist and will make an appt to see a gyne.

After the surgery 2 yrs ago i had asked her if i needed to monitor the anemia. I had also asked the fibroids specialist/surgeon this. Both said no. However, the blood tests were still low a year after that and now 2 yrs later. I have not been asked to take supplements, except during "that time of the month" which the reg. MD told me. Then a couple of months ago she denies telling me she said that!! Geez...so she told we will monitor it every 3 months...and told me to take it everyday (iron). My iron pills are 50mg. But i have in the past been asked to take 500 mg. I just started to take 3 pills a day. But like MJINTEIRORS say I need to have someone competent diagnose and treat the problem(s) so I will move fwd and ask her for some referrals. During my period now I sometime am bed-ridden. My legs get so weak from losing so much blood still. I still use a Depend for the first 3 days of my period, which is the heaviest. I certainly don't think this is normal. I'm so tired of being tired , fatigued, sick, unproductive, and having a comrpomised life. Wasted 2 decades of my life in pain and suffering and really don't want to continue being an invalid, and i do feel like this alot of times. sigh.

 
Old 05-16-2011, 07:36 PM   #7
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Re: Severe, Persistent Anemia & Fibroids

MJ Interiors:

When i first got diagnosed in 9/2007 my hemo was 8., ferritin was 1. hematocrit 28, iron 16 which alerted the nurse. Was supposed to go back in a week to collect results but the supervisor was so startled (She's never seen #s that low) that she called me to immediately see her the following day.

In the past couple of yrs the hemo went up and sometimes on borderline betw out of range and on the low site, but ferritin and iron is ridiculously low. Went up to 18 at one time (pre-surgery, when i actively took supps). But is back low again, iron serum low (30), iron saturation (7 alert), ferritin 7 (low). Then most current , ferritin 5.

Don't really know how to interpret the results just that some of the numbers are fairly out of range.

 
Old 05-18-2011, 11:56 AM   #8
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Re: Severe, Persistent Anemia & Fibroids

Fitness Seeker: Pleeeeease have a gynecologist handle your bleeding problem. One that specializes in fibroids and fibroid surgery and is fully aware of how these cause anemia! Your anemia is SEVERE and your MD is really ticking me off frankly. He/she keeps just laxidazically telling you to come back in every few months to discuss results again and only puts you on 50 mg? He or she needs to know what her limitations are and needs to refer you to the best Gynecologist you can get. She also needs to refer you to a very good hemotologist that knows how many milagrams to prescribe to you of iron and knows how all these numbers and levels work together and hopefully one that will work in conjunction with your gynecologist so that the treatments are coinciding! This has been going on since 2007? This is obsurd!

Ferritin of 1 is the lowest I've seen. My ferritin was a 3 as of 2 weeks ago. My iron was a 9 (not sure what it is today) at that time. My hemoglobin was a 6.9. I got the shocked doctors that never saw levels so low too - but I'm happy to report that my shocked doctors immediately referred me to the specialists! They even made me stay at the office while they tried to get any these specialists to see me immediately! They couldn't get me in for almost a week but they sent me the very next morning for further more detailed blood tests, and they put me on prenatal vitamins in the meantime (wha???? see? just from reading this forum you know that they should put you on 'iron' - what was up with the prenatal vitamins? Okay, they did make me feel better so I'm still taking them along with my iron... but General practitioners are NOT experts by any means, it shocks me how little they know - we can get better answers on the internet for heavens sake!).

So what kind of sonogram did you have? My gynecologist immediately cancelled the ultrasound that my regular doctor had ordered for me. He said 'nope - thats not good enough, we're going to do a sono-hysterogram (or something like that) right in my office and I'm going to do it. They shoot saline inside of you and then use this really long probe that somehow takes the pics from inside. He did NOT see my canteloupe sized tumor from doing a regular pelvic exam that included a pap smear etc nor could he feel it by pressing down from the outside. It was only visible via this highly specialized sono hysterogram (or so he called it).

I'm just wondering if you could have something like this too that isn't being noticed somehow?

Ok, lastly, what kind of iron are you taking? Is it the farrous sulfate? I just got my results back after being on the iron for only 10 days and my hemoglobin went from 6.9 up to 8.4 and my ferritin went from 3 up to 10. I'm ecstatic! I even still have my giant fibroid (for 2+ more weeks). I'm curious though, if the doctor calls me back I'm going to ask her if these levels could go down again when I get my period - like maybe this is normal for me when I'm not on my period.

Hope you get in to see these specialists soon! It's not right that your regular doctor was insisting on trying to handle this on his/her own, you're not a guinea pig! Don't let them treat you like one!

Michelle

Last edited by teri579; 05-18-2011 at 11:59 AM.

 
Old 05-18-2011, 12:35 PM   #9
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Re: Severe, Persistent Anemia & Fibroids

Thanks so much. Hugs and kisses, I love you for being so caring Michelle! Well, after subscribing to this forum a few days ago and learning things from our this valuable forum, i decided not to "wait" for the family Md. I will see her tomorrow, btw.

Yesterday I spent an hour calling up a list of gynecologists that I was given. gosh, could you believe 3 months for an appt! This was exactly how it was 2.5 years ago, going to the hospital w/ t he Fibroids center. Not all hospitals have fibroids center, so i was very relieved and grateful that i did not have to travel outside of my city. i called other gynecologists (on the family dr's list) as well as the same hospital where my surgery was done. So i secured an appt for late Aug and will call on Fridays on occasion to see if i can pick up a cancellation slot. One of the receptionist who answered my call (i had to explain as a new patient what I was seeing the gyne for and when i told her abt the anemia she said "I think you shd be seeing your family Md for that!")

I didn't go back to the fibroids specialist /surgeon after our "post op". Had the surgery in 5/09 and was fine but in 12/09 i did have a scary episode in which i had very sharp pains for 2 days. On the 2nd day i asked my hubby to take me to emergency (same hospital that did my surgery). They did the routine tests, figured i was alive and not dying so they sent me home and told me to see the fibroids surgeon. When i saw her in Jan. 2010 she told me that she is just the fibroids specialist (i guess she gets too busy) and that in the future i'd have to see a colleague of hers in Gynecology. (requires 3 months in advance booking). I wasn't interested in waiting 3 months for appts so i never went back...

I do have a PPO insurance so I could just randomly find a hematologist i suppose. Do hematologists usually work with cancer patients ? It's just a pain if i have to wait months for an appt. I was thinking it may be more efficient to see the specialists at the same hospital (and wait the 3 months) instead of seeking someone outside and then i would have to "explain" all the history and copy a mountain of labs, which they might not even review. What do you think?

If anyone here is located in No Calif I'd love to hear if you have any great gynecologists that would accept a patient sooner than 3 months! (Now you understand why i get so frustrated all the time?!)

Before the surgery, 2.5 yrs ago the fibroids center (i already told them I was confirmed w/ fibroids w/ Kasier but once they found out i did have fibroids the gyne there didn't want to do further testing or treatment. Simply asking me to take birth control pills to contl bleeding and pain releivers). So at the new hospital, we first did the reg. sonogram (they wanted to do their own work). Shortly after we did the saline sonogram (the one you had Michelle). This one was done with a physician and intern and technician, wherease the first one was done by just a tech.

So when the family MD asked me to get a "follow up" sonogram i was thinking that day, well hell, what good would a reg songoram do b/c the clarity isn't too good. They'd have to do the saline one at least to see anything. Hence, the report does say that if further eval is needed an MRI is an option.

 
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Old 05-18-2011, 06:20 PM   #10
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Re: Severe, Persistent Anemia & Fibroids

I'm shocked and grateful. Shocked that in a big city like San Fran, you have to wait 3 months to get in to see a gynecologist! I'm grateful that I don't live in San Fransisco! I mean, I'm only 25 minutes from Boston but I'm not going there, it's not necessary. We have so many wonderful hospitals and doctors around here (even up in the suburbs here on the North Shore) it's really quite amazing.

I think you need to be using your hemoglobin and ferritin levels as clout to get in sooner! My primary care doctor (well, her staff) made all these appointments for me and really would not let me leave until I confirmed them. She's that concerned about me, she knew my levels were that serious. She wanted any of them to squeeze me in immediately, I so appreciate her for that, and I was successfully in to see 3 specialists within 8 days and had already had 2 rounds of bloodwork, thanks to her. By the 10th day, had the sono-hystogram and my surgery was already scheduled, by my gynecologist for June 6th (less than a month from the sono-hysto). And I never have to wait more than 5 to 10 minutes to see my doctors, they never left it up to me to make the phone calls or set anything up, they did it all for me! I'm so blessed now that I hear your story and all that you are having to do and that you're not in to see a gyno until August!

Just make sure they know that your anemia is caused by blood loss from your cysts and tell them what those levels are!

Oh, I still didn't hear you say anything about your iron supplement? What are you on for iron? Did you see how fast mine went up (read previous post of mine) and I still have a fibroid the size of a canteloupe inside of me, so I feel like your levels should be able to go up in 10 days too if you did what I'm doing, right?

I hope I'm not sending you on a wild goose chase about the cysts and making you do all this work for nothing. Maybe you just need the right amount of iron. Sorry I'm crashing, suddenly I'm tired and my brain is turning into mush so I need to go to sleep. Take care,

Michelle

 
Old 05-19-2011, 03:05 PM   #11
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Re: Severe, Persistent Anemia & Fibroids

Hi Michelle:
Ok i went to see the GP for discussing the "results" of my labs. Gosh, she gets on my nerves! I don't think I will be returning to her. I don't even know why i had to go in b/c she could have just called me to discuss us. Wasted 2 hours of my time (driving to and fro). All she said was i need to take iron supps everyday for ONE YEAR. I asked how much do i take. She asked if i could tolerate them. I said i dont get constipated but i think i can feel slight discomfort in the stomach. She said that take as many as i can. That if i can take 3 a day (50mg each) than the better (faster I'd get my stores up). I asked her if i need to see a hematologist and she said no. She said that I could talk to a gyne abt the fibroids (regrowth, etc). So anyhow, I'm done with her. I just don't have the patience or time....

Yesterday I called Stanford hematology but awaiting their return call. I also got someone's cancelation in gynecology (hope it doesn't take 3 months to book appts here!) but it's early! I got to leave by 6:45am to get there by 7:45am. So let's see ...hope things are better there.....

 
Old 05-19-2011, 04:36 PM   #12
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Re: Severe, Persistent Anemia & Fibroids

Oh my goodness you are SO right, that could have been discussed over the phone! Again, I feel so lucky. My general practitioner's office is 5 minutes down the road (and I live in the boonies, but there are a few businesses, doctors and dentists in this nearby town). They only called me in to discuss when my results came in from my bloodwork, and I thought that warranted a face to face discussion... and at that appointment they proceeded to book all of those specialty appointments for me and set up my next round of bloodwork - a productive visit. Sounds like your visit was just another excuse to charge you for an office visit!

So that's GREAT news about the gynecologist cancellation! Do you mean tomorrow morning already? Oh, was it you that asked me if hematology and oncology share offices and yes, my hematologist is also an oncologist. I found it kind of scary when I was referred to her and saw her title that included oncology

Please keep us posted (or 'me' anyway!)

Michelle

 
Old 05-20-2011, 10:24 AM   #13
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Re: Severe, Persistent Anemia & Fibroids

Hi Michelle:
So i went to my 1st gyno appt at the new hospital. I was very happy to get a 2nd opinion and to get an MD who takes me seriously and thinks it's a concern. She looked at my past labs. She was concerned w/possilbe hypothryoid, altho i only had one test done the last 3 years. She requested to have me see an internist and i was able to do a 'drop in' after some begging! (so that i don't have to do an extra trip.) The ordered labs for everything--panel cbc, iron /ferritin, thyroid, etc.

although the gyno thinks it could sth else addl' (including thyroid issues) we won't know til labs come back. The internist doesn't think i have thyroid issues. He wanted to see pulmonary reports (i have seasonal allergies) and since the severe windedness and out of breath occurs when i climb stairs/hike/walk uphill/swim/or moderate-strenuous physical activities, he says the onset is just when i do sth physical. the chronic fatigue--we have to find out what causes that. Internist ordered an ECHO test. He suggested i run around the block b4 i take the test so they could record some good data, b4 and after exercising (on a treadmill i guess). So, although we are just re-doing various tests, I'm glad to be taken more seriously.

Gyno says I DON'T have anemia b/c my hemo seems ok (although it's low and not within range/borderline). She says 1 tablet of 50mg of iron is sufficient, don't take 3 as suggested by GP.

 
Old 05-20-2011, 11:14 AM   #14
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Re: Severe, Persistent Anemia & Fibroids

So happy to hear that wheels are turning in your situation... happy that you got in so quickly... happy that you're happy because you feel like somebody is taking you seriously. It sounds like they right away are finding things that might not have been mentioned by your other doctor (like the thyroid thing) and that they right away ordered more specific tests. This is the way you get to a diagnosis, not doing the same thing over and over again (have you heard that saying about the 'definition of insanity'? it's 'doing the same thing over and over again and getting the exact same results'... which is what it sounded like your regular doctor was doing with you for years. I hope you get some results soon and that your results point you in the direction of a correct diagnosis so that you can have a treatment that suits your condition!!!

Michelle

 
Old 05-20-2011, 12:11 PM   #15
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Re: Severe, Persistent Anemia & Fibroids

Hugs and kisses to you, for listening to my *frustrations*!! Ok, so i will start doing 1 iron supp daily til further directions. i forgot to ask her if i shd take the folic acid, too. Do u take them after a meal? I sometimes just have a snack and take them. Internist did mention that iron supps aren't absorbed too well as they leave pretty quickly, so I'll try to eat some more iron-rich stuff (ie beans). The former family MD didn't even realize beans were rich in iron! arrrghhh...

Yea, since i'm in my late 30s and i got married really late in life (2.5 yrs ago) and haven't had a child yet, we (gyno) was concerned about really taking care of these "issues" so we could proceed as i might have some challenges.

Internist also ordered a 'sleep test". I have had insomnia since i was a teen. I wasn't successful in getting a sleep test done w/ my insurance (2 yrs ago), so I did inquire abt this w/ the current internist. He says normally the insurance does accept it. I guess it's all about how they "code" the visits. I would be so thrilled if my insurance takes it. (we pay 50% of the premiums b/c we work for a very small com) so it would suck if they tell me it's not covered and will cost me $20k.

So how are things with you now? Your surgery is coming up, yea? Hope all goes well....keep us updated!

 
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