If you ever start to turn a nice shade of yellow, don't ignore it. Trust me, just don't.
In a nutshell, I went from healthy to dying (even tho I didn't know it) thanks to taking a simple, common herbal supplement. If you have the time and interest, here's the whole story....
I was doing rather well, I must say. Thirty years old, and never felt better. My workouts were increasing my strength. ( I mean, hey, plank-rows with 20 lbs was an accomplishment for these skinny bones.) I had a healthy appetite, ate "mostly clean", no recreational drugs, alchohol, smoking, minimal over the counter meds... oh yes, very healthy lifestyle. But, I had a weakness - Googling herbal supplements that could make my body even better. So I ran across a blog that said to "take two weeks of milk thistle to cleanse the liver of excess hormones and environmental toxins." I'm not talking about an extreme "liver cleanse", with dieting, juice fasting, etc. I'm talking about popping a simple capsule 1 to 3 times a day. Did some more research about the safety of milk thistle (not to be confused with milkweed, which is known to be toxic) and ordered some through Puritan's Pride - NOW Foods Inc. Double Strength Silymarin Liver Support (Milk Thistle with Dandelion and Artichoke.) The milk thistle supposedly helps flush and support the liver, while the dandelion and artichoke help the other systems of the body eliminate the toxins.
I'm not one to do anything half-way, and since I was planning on a short two week usage figured I should go with the maximum recommended dosage of 1 capsule, 3 times daily. Actually sat down with my planner and wrote "MT" "MT" MT" on each day for the following two weeks, starting with a first dose on 9/11. How else would I remember? I also stopped taking all my other supplements (which consisted of basics like iron, evening primrose oil, a multivitamin, all things I'd been taking for months.) because I figured I should let my little liver focus on the milk thistle.
That week I took it faithfully, and must say, I thought I noticed an increasing yellow hue to my eye-whites and skin. In retrospect, I also began to notice some tiredness, especially near the end of the week. By 9/19, my husband even agreed, I was definitely Y e l l o w. We cracked a lot of jokes about it, sent pictures to people. Found it amusing. Because I love to laugh. Of course, it was also back to my old friend Google. I could find very little on milk thistle and jaundice, so presumed it was a "detox symptom" ( Oh those two fatal words.)
Sunday, the 20th, I felt awful. Fatigue, weakness, and a strange pounding in my head. I remember taking a nap, and feeling like I was sinking into myself. In a half-awake state, I thought I said to Seth "I think I'm dying" but he never heard me. At any rate, I didn't feel so deadly-ill once fully awake, pulled myself and a wagon full of toddler for a walk, and that night, took another milk thistle pill.
The next morning, I woke up, pushed through my morning workout, and..... took another dose. By unfortunately ( maybe, fortunately) it wouldn't stay down. Feeling horrible, I didn't eat and decided to take a break from the supplement. I talked to two different "herb shop ladies" and heard things like "detox symptoms - sometimes it gets worse before it gets better" "don't stop taking it". "try lemon water for three days, then go to one milk thistle dose per day to finish the detox". My instincts said to stop it anyway, so I did. And I tried a home remedy for plugged liver ducts that you don't want to hear about.
I was "feeling"somewhat better by Tuesday morning, but one strange symptom, was that the pounding in my head was distinctly the sound of my heartbeat.( Google again... I hadn't learned yet.) Apparently some people have this condition, they call themselves "whooshers" based on the whooshing sound, and it didn't sound very serious. There's even a "whooshers support" website -who knew? But boy, was it annoying, worse when lying down, and ever constant. Like a helicopter, or someone pounding on the front door. Tuesday and Wednesday I felt strangely weak and short of breath, but managed to struggle through my workouts and do other every day things, just rested more. By Wednesday night, I was out of breath just carrying my Rowan, or walking through the house. Oddly, I noticed my legs would ache when my breath grew short. (Later I realized this was my body fighting for my blood most likely.) I checked my blood pressure and pulse. BP, normal. Pulse was running around 100-110, even at rest. But this didn't seem high; I didn't realize my normal pulse is around 60.
Meanwhile, my friends and family and the nice lady who works for poison control were concerned, and wanted me to get some medical care.(Besides pregnancy-related visits, I've been to the doctor once in 4 years. We're part of Medishare but without regular insurance, you don't just run off to chat with the MD or hop into the ER) But Thursday, I decided to go to a Dr. who provides at-cost labs. And that day, when I tried to exercise, couldn't even lift a quarter of the weight I normally can, literally did not have the strength and breath. It was frightening, and I had to admit something was definitely wrong. That afternoon, the doctor told me I was sicker than I felt, and not to exert myself. "Total couch potato status" were his words, while waiting for the lab reports. Like I can do that.
The labs didn't come back til Friday. In my extensive amateur internet research I'd run across "anemia". But anemia sounds so harmless, right? Like, you take some iron, and your fine? However, that night, I lay there unable to sleep, and could hear my "heartbeat in my head" changing, as in, there was a sort of whirring sound to it, like not enough "something", like my cat's heartbeat sounded when I listened to him die, from a virus that had cause, oh, that's right, anemia. I'd been tossing around on the couch so Seth could rest, and in that late night state of insomniac irrationality, I crept back to bed. "If I'm dying, I don't want to die out here alone, cold on the couch."
Of course daylight always makes you feel less ill, but then an aural migraine hit, a very rare treat for me. (The only two other migraines I've had were a result of a bad batch of Kombucha). Spent the morning in bed, waiting to hear back on that blood count. The other labs showed elevated bilirubin in the blood (level of 10%, normal is like .1%) and slightly elevated liver enzymes. But not enough to hint at liver failure. We were debating just going to the E.R., but really wanted to wait on that pivtotal CBC. We prayed for some of God's clear direction, and within 15 minutes the Dr. called with the results.
"Your hemoglobin (red blood cells) is 5.4. It should be at around 10 at least. You need to get to the hospital for a blood transfusion."
My E.R. wait was blessedly short. They ran more labs right away. Hemo was 5.2. The nurses seemed amazed I hadn't blacked out and was still up and trotting around, (tho' at a slower pace than normal.) Remarkably, I wasn't anxious yet. Maybe I didn't realize I should be. We were joking and laughing with the nurses. After all, it's not every day you see someone who's turned yellow from an herbal supplement that's supposed to help purify your body. They did "assure" me I wouldn't be going home that day. Finally, the hemotologist came in and explained what was happening. He said since supplements are not regulated by the FDA, there was most likely a contaminate in the one I took, which had bonded to my blood cells. (Milk thistle itself wouldn't cause this) and that it had resulted in what they term "drug induced immune hemolytic anemia". In essence, my immune system was attacking my blood cells because they contained a toxin, breaking them down, and my bone marrow couldn't spit out new ones fast enough to keep up, and the cells it did produce were immature, weak, and easily destroyed. The jaundice was result of bilirubin, which was released into the blood when the red blood cells died.
"You're going to have blood transfusions, and then be given a long, slowly tapering course of Prednisone to stop the immune response".
(Aaauugh steroid, no! I thought. Heard horrible things about steroids).
"So, what are the side effects of Prednisone?" I innocently asked.
"It doesn't matter, because if you don't take it you'll die."
Well. That answered that. At least he was honest, no way I was going to fight the treatment now.
I was supposed to get my new blood right away, but there were issues of various sorts, including the fact that my antibodies were whacked out and they couldn't match my blood safely. They tried multiple times to "clean" some blood to make it compatible, and finally, were waiting on some from the KS City blood banks. So I lay there all night, hooked up to monitors, but no IV or medication yet. The next morning, the 24th, I said, "Hey I feel a little better, and I'm not as yellow. Maybe I don't need the blood and can go home?"
"You not as yellow because you don't have as much blood in your body now, you have less than half what you need. Your hemoglobin is down to 4.2" They also decided to move me to ICU for the transfusions.
"Well, I seem stable right? I mean, I couldn't just die suddenly or anything..."
"Actually you could, your body knows which organs to shut down first. But that's why you're here, we won't let that happen. Oh, and be careful, We don't want you to fall or anything and lose any blood..."
It was in that moment, that for the first time, I could feel a panic rising up. I'm not given to anxiety attacks, and they'd done a wonderful job of taking close care of me all night, without letting me realize how serious things were, or could be. They last thing I needed was to make my heart work harder. I looked up at God, and I begged Him,
"Please, let me live. Let me just go on living the life you've given me, forgive me for any discontents I've thrown at you. I'm not thinking about the "big exciting adventures" I've not experienced, all I want is to be with the people I love, to get up in the mornings and breath and just be. To see my children grow, to get old with my husband, to laugh and love enjoy the world you made and let me be a part of. Please. And please calm me down right now, no matter what else happens." He heard me. He answered me by sending an instant sense of peace, I could feel my body relaxing, even as they wheeled me down to ICU.
Late morning, I was so happy to see those red bags pulled from those ice chests. I'm also happy they didn't tell me some of their concerns, which included the fact that my body could have rejected the blood (even after their precautions) or that my immune system could have destroyed the transfused blood as it came in. Didn't know that was a possibility until after the fact. If it had happened, I'm not sure what they could have done. But there were no complications.
*A side note: You know how you can sometimes "see things" behind your eyelids? When the blood started coursing into my veins, it was like a journey behind my eyes. And it was all red. I could see shapes that looked like feilds of sea anemones, waving grass, plains, hills, living forms, all red, all surreal. All alive. Of course, this might have been a result of a high dose of Benedryl and not some inner-body experience, but I've got to say, it was amazing, and relaxing. You should try it. Or not.*
By early Sunday morning, my transfusions were complete. With 6 units of blood, my hemoglobin was in the 9s. There was still some hemolysis taking place, but things were basically stable.
I was moved to the regular floor, where I got to spend the next three days, having my blood checked. My sweet husband banned me from any medical internet research. I'd already encountered some terrifying information, such as one of the lowest recorded red blood counts being something like 2.75 and requiring freezing the patient in order to sustain life, etc. Or the possiblity of ongoing hemolytic anemia. The doctor said in my case there was no reason to suppose it would happen again, but to avoid all non-FDA evaluated supplements. And to not look up "so much stuff online".
My hospital stay wasn't too bad, thanks to my friends and family. I missed my children terribly, and suffered some long nights, with anxiety (compliments of steriods) The nurses and doctors were mostly excellent. And the only really negative experience was when a nurse got confused and was going to happily give me another unit of blood that the doctor had NOT ordered. Fortunatly, my sister insisted she double check and I was spared.
So to make a long story even longer, I'm doing much better now. Down to 10 mg of the Pred (started at 75 in hospital) and hopefully tapering off in a few more weeks. My last red blood count was 11.3, hemolysis seems to have stopped, and now I go to have it checked every two weeks instead of every week. Crazy to think it's almost twice what it was at the lowest.
My strength is coming back, and I've never been so much at peace, or had such contentment. God gave me back my life, when He could have so easily let me slip away. Not that I'm afraid of my souls destiny when I die, but for the first time ever, I realize what a gift life is. Not something to be taken for granted, or disregarded, or ever, ever wished away.
And who knows? Maybe almost dying saved my life. Because now, I'm oh-so-paranoid about supplements, and it's possible I might've someday gotten a hold of one that was instantly instead of gradually fatal. It's opened up knowledge that many don't have what they claim in them, even if the ingredients aren't dangerous per say. I'm happy to invest more in getting all nutrients through food sources. Comfort Food: food that makes you feel safe because it contains what you need to be healthy and alive, like iron, potassium, protein, oh yes.
Anyway, hopefully the FDA or Comsumer Labs will investigate. I was told if I'd been older or in less optimal health, I would have had a stroke or heart attack or worse by the time I was hospitalized, with red blood count levels that low. I so hope that no one else experiences this from that supplement.
One last thing. If you can believe online medical statistics, drug induced hemolytic anemia occurs in 1 in 1,000,000.
Too bad I don't play the lottery.