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Posted 8/18/2011 10:04 PM (GMT 0)
As I mentioned in Eva Lou's thread, my ferritin level is 708, which is VERY high (I've read high end of normal range to be 115-300). I'm freaking out! I guess this explains why I've been feeling nauseated, no appetite, and having headaches all week (had the last iron infusion on Monday). The ANA test that the hematologist ran came out positive and I'm waiting for the additional lupus test results.

I'm going into panic mode!!!

Posted 8/18/2011 11:12 PM (GMT 0)
bookworm21,

Take a deep breath, now let it out. Repeat 4 times.

I'm sorry about your ferritin levels.

Don't panic, take it one step at a time. And you'll figure out what you need to do with your doctor.

I send you a big hug.


 

Posted 8/18/2011 11:40 PM (GMT 0)
((hugs)) and I'll be hoping for good news. Keep us updated, ok?
Posted 8/18/2011 11:53 PM (GMT 0)
Relax :) I had a positive ANA as well....but guess what? Now I don't - no Lupus. It could be a fluke. But I know what you're feeling. When I had the positive ANA, I freaked out too. But than I got to thinking. IF in the event I had Lupus or some other form of other AI disease, freaking out won't make it go away. Lupus can be controlled just like many other AI diseases.

Take one day at a time and try not to think of the what if's. I know easier said than done but your gut will thank you for it.

Please let us know how it goes with the testing okay?
Posted 8/19/2011 1:51 AM (GMT 0)
Thanks everyone. It's nice to know that I can always count on my HealingWell family.

I'm not too worried about the positive ANA--I've had a negative one before and I don't have lupus symtpoms.

I just realized that that ferritin level was before my last infusion, so my ferritin level is probably even higher. I think iron overload can lead to liver issues, but the nurse on-call said not too worry unless it's over 1500. But I'm a worrier...and I've been having loose stools (turned into diarrhea in the last couple of hours), headaches, and nausea the last couple days.

I'm just so sick of everything going wrong. I was hoping that the iron infusions would help with the energy levels and headaches, but I guess having too much has the same symptoms as having too little. So sick and tired of being sick and tired.

Posted 8/19/2011 6:26 AM (GMT 0)
If God forbid your lupus test comes back positive there is a world renown nutritionist in NY named Carmen Fusco who is known for getting people with lupus in remission; she helped a friend of mine achieve this and has been in remission for years now.

Be well
Posted 8/19/2011 11:34 AM (GMT 0)
Can't keep any food down--non-stop diarrhea since yesterday evening. Even if I take a sip of water, it gives me a BM and/or dry heaving. Diarrhea, nausea, and vomiting are listed as side effects of the iron infusion.
Posted 8/19/2011 1:53 PM (GMT 0)
Yeah, I've been thinking about your post, the level of iron... it does seem remarkably high! Have you been able to speak to your hematologist???? I'm so sorry, another thing to worry about, & here you thought the infusions would make you feel better! Plse. try to talk with the doctor- get feedback from her/him re. the high level, what they want to do about it, why they kept doing infusions with it being so high, etc.

Posted 8/19/2011 4:40 PM (GMT 0)
The hematologist doesn't seem concerned--she just said that we won't do any more supplementation and that the ferritin will decrease on its own. A couple of my liver markers are above normal range, which concerns me but not the doctor (only a problem if it is high consistently). I'm just paranoid that the doctor might be missing/ignoring something that could be wrong. Like what if the high ferritin levels are causing liver problems? (My liver markers were all normal before the infusions began)

Post Edited (bookworm21) : 8/19/2011 10:45:05 AM (GMT-6)

Posted 8/19/2011 5:14 PM (GMT 0)
well, you'd think the liver enzymes would drop as time goes out from your last infusion date. If they don't, then I'd worry! You could always check with your PCP too, at your next visit, or call them- explain the situation & ask them if they feel you ought to be concerned about any of it. Of course they may defer to the hematologist, but it's worth a shot.

Posted 8/19/2011 6:02 PM (GMT 0)
It's so scary dealing with all of this.

My liver levels were 6 times normal in March of this year, no idea why, two months later and it was down to 2x normal and I think it is normal now.....I have too many diseases to keep track of off the top of my head and don't have my records with me.
Posted 8/19/2011 10:10 PM (GMT 0)
Oh, my PCP already deferred me to the hematologist--didn't even think about that for a second! I contacted the first hematologist I went to (the one who wouldn't even prescribe me oral iron supplements b/c my ferritin was 14, which is technically normal), and he said he'll see me next week. I guess he was right about not doing iron infusions...

My liver levels aren't that much above normal I guess...ALT is 88 instead of 65 and AST is 42 instead of 30-something. I'm just a worrier--I can't help it!

On the bright side, two Imodium, lack of eating and drinking, and 1.5 liters of fluid stopped the diarrhea.

 

Posted 8/20/2011 4:45 AM (GMT 0)
Oh dear :( Well, hopefully things will improve, but as a fellow over-worrier, I imagine that it's not helping the way you're feeling. Try meditating...I use it all the time to help control my worrying (and subsequent symptoms!).

Good luck, and keep us updated!
Posted 8/21/2011 6:44 PM (GMT 0)
Not doing too much better. I moved onto some solid foods yesterday, which caused me to have some loose stools this morning. The nausea is non-stop. I don't know what's going on! And classes start this week too...ugh.
Posted 8/23/2011 10:16 PM (GMT 0)
Apparently my ANA is very high (the results for the specific lupus test haven't come in yet). This is not looking good sad
Posted 8/23/2011 11:32 PM (GMT 0)
((Hugs)) to you and don't worry too much.
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