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emmerrube: Hi there! :wave: Isn't it nice to know that we aren't just lazy and therefore out of shape?:yawn: 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!

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!:dizzy:

What hospital would you be going through? Did the CAT scan say how many centimeters it is? Don't be in shock, it's really so common that I think that it's more uncommon if you don't get fibroid cysts in your lifetime! I think I read that 50% of women between the ages of 30 and 50 have fibroid cysts. Most of them are removable in the office, like outpatient surgery. Mine is unusually large (like a cantaloupe) this is not common, and this is the only reason they have to do a hysterectomy on me. The reason I asked about the hospital you would be going to is because you need to ask them if you can speak to someone who does health insurance counseling, tell them what your situation is, what you were diagnosed with and that you need help finding insurance that you can afford.

I hear you about the time off work not paid etc. I've been dealing with this issue for a month or so now and have not finished any jobs in the meantime, which means I don't get paid. So this is one of the reasons I'm hoping to have the surgery a couple weeks later so that I can get caught up on my business (and of course, get paid too!).

The supplements might make you feel better, but they won't help the discomfort from the fibroid nor will they lighten your periods (at least I don't think so, I actually haven't been on my supplements long enough to have a period yet, so I'll let you know if I get my period before my hysterectomy otherwise we'll never know!). Any doctor should take you for a brief office visit to discuss your problem and do a round of blood tests. Discuss ahead of time that you have no insurance and see if they will negotiate a discounted rate for your visit and your bloodwork? I was surprised that my blood tests were not really that expensive - I have to pay for a bit more than half of each of them (my current insurance negotiates a rather large discount - it does not pay for any of this). My balances are in the low $100 range so I think most of them were around $220 or something in total. I'm hoping they will allow me to make payments on these since I had 5 of them done and I saw 3 specialists plus my regular doctor twice (plus ex rays and a sono-hystogram). You won't have to see all the specialists and have all those rounds of blood work most likely. I was an extreme case, a month ago I felt like I was wearing a 110 year old body, I felt like I had bone cancer and arthritis and my blood work was all messed up... so they had to do extra rounds and send me to specialists but that's probably not going to happen with you so I don't want to scare you. Anyway what I'm trying to say is that maybe you can have a consult with a PC and she can order one round of blood-work based on your symptoms, tell her what's going on and that you suspect anemia etc. The office visit may cost you a bit more than $100 and maybe the blood-work will be in that vicinity also? Or maybe you can come up with a figure that you can afford and ask if they'll see you and if you can make payments or something.

Oh, and the first thing my 'substitute' doctor had me take was prenatal vitamins. Then my regular doctor came back from maternity leave and said she would have said iron 3X/day but that I should get in to see the gynecologist immediately, then the hematologist. Then the hematologist said iron 3X/day but I could keep taking the prenatal vitamins too since I thought they were making me feel better. Don't take iron 3X/day without having your blood tested though because you can overdose on it if you don't need that much! I needed that much. I think I'd start out with prenatal vitamins once a day and try to get in to see a PC, and talk to somebody at the hospital that can counsel you on the health insurance piece. Good luck! Keep us posted...

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