Monday, April 7, 2014

Still running a few pints low

And then, it was six weeks later. I'm not sure how time got away from me, but I apologize for not updating my blog sooner.

To recap: Over the last 2-3 months, I have lost a lot of blood and become clinically anemic (low hemoglobin) because I have fibroids in my uterus. There are three of them and one is the size of a 16-week old fetus and the other 2 are about 6 weeks along. In fact, the big one completely fills my entire uterus! I got to see them in ultrasound pictures but decided not to get a printed copy to hang on the fridge. The main, troubling symptom is massive blood loss and the only way to recover from that is to take iron supplements and, well, stop bleeding.

Last time we met, my hemoglobin had tanked to a low of 9.7. Over, the past six weeks, I got it up to a high of 12.4. My goal is to be around 14. My running mileage and intensity increased steadily with my blood levels. I began feeling so much better with each incremental gain in red blood cells. I have also found that this is not necessarily a linear process. Some weeks, my blood levels rose in what appeared to be regular increments while in others, they didn't go up at all, even under the same supplementation regime and without any blood loss. Then, some weeks, like last week, I lost so much blood that I ended up losing ground and became anemic again.

Here is a quick record of my blood levels and corresponding workout milestones:

2/14/14
Hemoglobin: 9.7
Hematocrit: 29.3
Running workouts: Kept all workouts to short speed efforts. Ran about 3-4 days per week, ~20 miles/week. Felt very tired running. Had to stop numerous times to get through an easy run. Had to walk rest breaks when doing speed work.

2/18/14
Hemoglobin: 10.8
Hematocrit: 33.7
Running workouts: Still keeping to short speed efforts. Ran about 3-4 days per week, ~20 miles/week. Still felt very tired running. Still walking in rest breaks when doing speed work.

2/25/14
Hemoglobin: 11.2
Hematocrit: 35.4
Running workouts: Finally starting to feel better. Ran a long run at around 7:30 pace midweek and it was hard. Heart rate averaged 88-90% of max for the whole run (usual pace at that HR range is ~6:10). Did a short speed workout over the weekend and it was the first time I didn't have to walk the recoveries! 48 miles this week. Felt less tired running in general.

3/6/14
Hemoglobin: 11.7
Hematocrit: 35.7
Running workouts: Not much change here. Pretty disappointed that my hemoglobin didn't rise more over the last two weeks despite the iron supplements. I guess recovery from anemia isn't a linear process. I did some running on hilly trails and felt much better than I thought I would. However, I had to cut my first lactate threshold workout into chunks a few days later because I couldn't hold 6:15 pace for more than 800m:(.

3/12/14
Hemoglobin: 12.3
Hematocrit: 38.7
Running workouts: Had my first long workout with 9 miles at alternating marathon and lactate threshold pace. Ran all of it, but boy did I stop a lot. Averaged about 6:25 pace, but I did stop about 6 times during the course of this "continuous" workout.

3/21/14
Hemoglobin: 12.4
Hematocrit: 37.8
Ferritin: 35
Running workouts: Had my blood drawn on my own and decided to get ferritin checked too. Was happy to see that my iron stores are still up there! Ran a couple of lactate threshold workouts and stopped in at least one of the miles to complete at the faster paces (5:58-6:07). I don't recommend this, btw. It's not the way you're supposed to run them, but this is what happens when your brain is disconnected from your anemic body: you think you can run faster than you actually can and then you die during the repeat.

3/28/14
Hemoglobin: 11.9
Hematocrit: 36.8
Ferritin: 19
Running workouts: I had my blood drawn because I had experienced another major episode this week and was very worried about the effect on my blood levels. I had good reason to be concerned. Not only were hemoglobin and hematocrit low, but my ferritin took a nose dive because my body was really needing the stored iron to make new RBCs. I also changed my supplements a little this week from taking the liquid ferrous sulfate 3 times/day to taking it once and adding in a "gentler" product called "blood builder" with non-heme iron, folate, and B vitamins. I won't do that again. That stuff doesn't work for me.

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So, that was last week and I had a race yesterday. Maybe you can imagine the deflation I felt when I was making such good progress with my blood levels and then, BAM, I lose nearly a month's worth of progress and turn into anemia girl again. IN TWO DAYS!!! I had hoped I might be close to normal by the time the race rolled around.    

I was a bit conflicted about whether or not to even run the race. I had missed two other races I had signed up for in March because of my health issues. The first race in early March was a 10 miler and I couldn't even run 10 miles at any pace without stopping to catch my breath at that point, so that was kind of a no brainer. Then, there was the hilly but beautiful Race across the Bay in San Francisco where I did so well last year. I was feeling better by then, but wasn't sure I could run without walking the hills. No go.  

With yesterday's Sactown 10-mile race, I knew that the anemia was going to affect me, but I decided I didn't want to miss another race. There is this little thing called ego that tried to get in the way of my decision, but I decided to just suck it up and go for it. I'm really glad I did. I had hoped to run around 6:30 pace for the whole race and try to pick it up a bit if possible in the second half. I stuck to my plan and was at least able to even split the race. I ran 31:59 for the first half and 1:03:57 overall. I was very pleased with this given the fact that 3 weeks ago I couldn't hold that pace for 9 miles. What I have to forget about is that I was running 30 miles/week at less than 6:20 pace two months ago in training.

The good thing about being anemic is that I will feel like a freakin' rockstar once my hemoglobin levels get over 13. I still have a long way to go, but I am hopeful that the meds I'm taking to control the bleeding will eventually kick in. I have been able to keep my mileage up around 60 these past couple of weeks and will be gradually increasing as I get closer to the Eugene Marathon.

So what is the solution to my medical problem? Well, the "easy" answer is to have a hysterectomy. In fact, the two gynecologists I saw prior to seeing a surgeon a few weeks ago, had already written my uterus off. When I walked in to see the surgeon, she said, "so, you're done with your uterus and just want to take it out, huh?" I told her that I never said that and, in fact, had told both of the other doctors that I did not want a hysterectomy. I wanted to see if I could manage the problem with meds before yanking the thing out.

This doctor was very good. She told me I had a few options available before resorting to major surgery. She explained these to me and said that I could totally live with my fibroid babies as long as I could deal with the symptoms. She also confirmed that they were living off a diet of estrogen and that, decreasing that would make them shrink and die. This is why they go away in menopause. I am a few years away from that big change, but it at least gives me a timeframe to work with.

What I have been doing is looking for other alternatives to reduce estrogen levels in my body and to shrink the fibroids. Those of you who've been regular followers will recall that I had my blood estrogen levels tested about 2 years ago (on my own because my docs said it was not useful) and was shocked that they were in the 500+ range which is the ideal level for someone on IVF treatment (very high). The medical doctors I have dealt with think estrogen tests are useless because they change with the monthly cycle, etc., yet they prescribe hormonal pills to increase them in order to remedy problems like I am having.

I am operating on the assumption that my estrogen levels are high (well, I have tests to prove that) and that my progesterone levels are low (taking BCPs for that). I am taking a product called Myomin to reduce my estrogen levels. It takes about 3-6 months to see reduction in fibroids if it's going to work. This is a long-term strategy, obviously. I also believe that I can quash the Occupy Jaymee movement inside my uterus by taking systemic enzymes that help to break down fibrin. This is based on internet research I have done and there is some science behind it, but it is purely a trial. I am assuming it can't hurt me to try.

In making this choice to try these alternative treatments and give my body a chance to kill the little bastards I have chosen a tough option. I won't get quick relief from this route, but I will at least know that I exhausted my non-surgical options. It is so tempting to think about surgery on the days, like the two days last week, where I am bleeding uncontrollably and know that I am becoming anemic yet again.

I am seeing progress. My blood levels aren't dropping as much as they were over a month ago every time I have a period, and I have new ways of coping with the massive bleeding when it comes. Ladies, if you are in the same boat as me and haven't tried the Diva Cup or Lunette, you are missing out on a wonderful world of leak-proof protection! Gross, I know guys, but this little device has literally changed my life. I can do everything I want to do without worrying about the flooding interrupting the party. It is perfect for runners and offers 12 hours of protection (for me that's about 3 hours, but way better than the 5 minutes I get from the other options).

And, I do believe my fibroid babies are shrinking. They are big enough that I can actually feel them in my abdomen (be grateful I spared you the baby bump pictures). They are definitely smaller than they were a month ago. As my symptoms subside, I'll try to get in for another ultrasound in a few months to see how much they have shrunk.        

I am happy to be able to share my story with all of you and add another anecdote to the interwebs about dealing with fibroids--one that is specific to athletes. I got confirmation of the educational benefit of my efforts from a fast guy runner yesterday who confessed that he has been reading my blog despite the warnings I have posted. He said, "I had no idea how much older women have to deal with!" I told him these problems are a lot more common than he could imagine, but most women choose to keep their stories private--and for good reason! I'm glad I didn't.

21 comments:

  1. Hi Jaymee - I was googling piriformis syndrome and came across your blog. After clicking around I found this article about your anemia and had to comment because your story is so similar to mine. I have been suffering from anemia caused by a fibroid the size of a 24 week fetus. It was protruding from my belly. (I'm a size 0 so it was hard to hide) My periods were extremely heavy and lasted up to 14 days and pretty much took over my entire life. My running completely tanked as my ferritin dropped into single digits and remained there even after taking high doses of iron and eating red meat every day. Every doctor I talked to only recommended a hysterectomy and I did not want to have a surgery that would put my out for 8 weeks.

    Thru researching on my own - I found a non-surgical procedure called Uterine Artery Embolization and it is done while you are awake using x-ray guidance. The IR doctor makes a small cut in your vein near your groin and basically kills off all the veins that feed the fibroid. Your heavy periods stop immediately. The fibroid dies and starts to shrink. I was back running within a week. For some reason - probably my high activity level - my fibroid started to shrink at a miraculously fast rate (this is not the norm). I had the UAE 12/5/13 and by march my fibroid was only 4cm. I had a procedure called a hysteroscopy at the end of march to remove the remainder of the fibroid. My ferritin has climbed to 49 in 4 months. I also went from weighing 112 to 102 because of the huge mass of fibroid no longer being there. It has changed my life.

    I highly recommend looking into this to treat your fibroids. I'm not sure where you live, but I had an excellent doctor at Penn.

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    1. Thanks so much for your comment and for sharing your story. For whatever reason, my doctor is not offering UAE as an option. I think it might be because the HMO I belong to does not offer the treatment. Also, I have very minimal healthcare coverage right now, so even if they did offer it, I don't think I would be covered. Nonetheless, I have read about it and think it looks like a great option. Your story is encouraging! As I said in the post, I am working on shrinking the fibroids medicinally. If it doesn't work, or I get impatient (or too anemic), I will start looking for other options. One thing I do know is that they may not be able to surgically remove my fibroids regardless of how small they get if they are embedded in the uterine wall. Apparently, this is far too risky due to the large amount of blood loss involved during surgery as compared to a hysterectomy. The doc said she won't do it. More to come...

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  2. Jaymee, that's generous of you to share your story so that other readers may learn and benefit. The comment above shows promise if your 'babies' don't continue to shrink with the treatment you're giving them. All the best.

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    1. Generous is a nice way to put it, Ewen. I appreciate you continuing to have the courage to read these posts. I guess you know what you're getting yourself into, though. Thanks for the encouragement!

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  3. Thanks for the update, I was wondering how you've been going. I'm a year or so younger than you and I've already hit the pre-menopausal era. Yay. It has it's own challenges, luckily fibroids isn't one of them.

    I've really appreciated being able to follow your iron challenges. I have always, since puberty, had issues with low iron. My body just doesn't absorb it well, not matter what I eat or don't eat. Switching to Liquid-Ferro since reading about it here has been amazing. For the first time in at least ten years I don't feel tired all the time. I don't need to sleep 9-11 hours every night just to function (and that was when on ordinary supplements). I think I'm running faster, although I'm not sure as I'm dealing with ITB issues and soreness related to increasing distance.

    Good luck with resolving this and your alternative approach. I'd do the same thing, anything to avoid major surgery. Our bodies are designed to heal themselves from most things, if we can just support that process. Often I think we're too quick to go under the knife for a quick fix, when we should look at other options first. Yes, I frustrate my doctor regularly with this viewpoint! LOL

    Good luck and fast healing!

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    1. Yay! Glad the liquid FS is helping you. It is really the only thing I can take to get my iron levels up. As I mentioned in the past couple of posts, the real issue is actually getting hemoglobin levels up. Low iron is a precursor symptom to low hemoglobin. I wonder whether you've seen a change in that as your body has been able to store more iron. I bet it has gone up and that's why you're feeling so much stronger. Exciting! I hope that your ITBS heals fast so you can fully test out your new blood levels!

      And, thanks for the support on the decision to go natural with the treatment. It's working well so far (fingers crossed).

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  4. Thanks for posting this - this is the first time I've seen anything posted by a runner (let alone a fast runner) on the subject. I'm discovering the hard way that it is hard to find legitimate information about shrinking fibroids. I'm actually rather troubled by the lack of fibroid awareness out there in general because for years it seems that the attitude has been "if you can get a hysterectomy, who cares!" Which obviously, ain't ideal for anyone.

    I'm impressed you're still running well with the HG levels. I'm fortunate in that my stupid massive fibroid is external so I've avoided anemia. However, the damn thing has contributed to pelvic alignment issues and has compressed my bladder to the point that I can't run more than a few miles at a time, which is awesome when the stupid thing is large enough to make me look a few months pregnant. And in regards to what your friend said, I'm 34. While I guess I'm not exactly young, I think it's important for women to know that these things can show up and wreak havoc on your running, either from blood loss or just having it lean against the wrong organ.

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    1. AR, Thanks for your comment and I appreciate you sharing your fibroid story. Your situation sounds very miserable. I'm not sure if you read the post before this one, but tI linked to an article about a triathlete who had a fibroid that was pinching nerves and making it impossible to run. She had a myomectomy to get rid of hers.

      The good news, and I promise to update my blog soon, is that I seem to be getting mine under control. The BCPs have helped to regulate my cycle and my blood levels are skyrocketing. Running is so much easier with red blood cells!! I really can't know whether the things I'm doing to shrink the fibroids are helping to do that. I can still feel them, but maybe they don't seem as large? Hard to say right now. Regardless, I and thrilled with where I am right now. As you know, that can change any day, so I'm trying to enjoy the RBCs while I have them. I will continue to update about this, so check back often! All the best to you.

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  5. Thanks for being so brave to discuss your fibroids! As common as they are, you'd think they'd be discussed more, but the books I've read on the topic say women who exercise often don't have a problem with them. Sucks being the exception to the accepted dogma. I'm glad you have found a treatment that seems to be working to manage and hopefully shrink them. I have a few fibroids, including a large one about the size of your large one. Mine causes extended bleeding (half the month at least) but no flooding (yet). My grandma had one of the flooding ones and back then they just cut everything out to treat it. I've followed the research on options and they do have so many more options now, but insurance has been rather reluctant to cover the newer treatments. As for the old hysterectomy option, really, who wants to have major surgery and have a part of their body removed! Not me, that's for sure! I was on a clinical trial med for a while that really helped, but some folks were having side effects and so they shut down the trial. Now I just supplement with iron and know that sometimes my fast runs and races will be affected, especially races around mid-cycle when estrogen levels rise and I can feel the stupid things actually swell a little larger. Usually they just ache and spot and impact my bladder capacity (and racing while half-dehydrated sucks). On my next doc visit I'll have to ask him about Myomin. I hope you continue to see great progress with managing yours and that your performance starts getting back to normal!

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