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Gosh, I haven't been on HealthBoard in so long, I forgot my password!
:wave: Hi everyone! Ok, I was born with a genetic disorder of a musculoskeletal/connective tissue nature called Nail Patella Syndrome. I think I've become a bit of an expert on that one as myself and 3 of my 4 children have it as well, and it can cause kidney issues and I'm currently Stage 3 chronic kidney disease. I was also diagnosed with Fibromyalgia in 2009.

Anyway, I have been feeling more exhausted, lethargic and antisocial than I've ever been in my life for the last few months. I went in to see my Nephrologist as my GP couldn't seem to figure out what was wrong with me and just told me it was depression and/or anxiety. I know I have those problems, and I do take medication for it, but it's different than that. It's PHYSICAL not MENTAL. I just don't feel good. So my Nephrologist decided to do some blood work including Ferritin levels, which I haven't even ever HEARD of until last Friday! So I get a call on SATURDAY directly from the Nephrologist (who's specialists call them on a Saturday?? Unless it's bad news, right? Freaked me out anyway) and he wanted me to schedule an appointment with the chemotherapy unit of my local hospital (I live in "Nowhere'sville" Nebraska) as soon as I possibly could to get Venofer, an IV iron infusion once a week for 4 weeks and set me up another appointment to see him in a month and get rechecked. He said that my ferritin level was 4 and my hemoglobin was 9, and as a 31 year old non menstruating female (I had a hysterectomy in 2009 because of endometriosis), it should be between 60 and 120 and he claimed to have first considered a blood transfusion before deciding to do the Venofer. He didn't stay on the phone long, and I was so surprised that my brain left my head for a few minutes there, and I didn't really get a chance to discuss this further with him. So, my questions are for anyone who can answer them for me.... How low is too low and is a ferritin level of 4 dangerous? I had my first infusion yesterday and have a few mild side effects, how long will they last? How many infusions will it take to get it to "normal" or "healthy" levels?? Any input will help me tremendously, because I'm one of those weird people that need to know, and has a horrible fear of the unknown. Even if it's bad, I'd rather know what I'm up against, than be left in the dark letting my imagination go wild! I've done some internet searching (that's how I found this board and remembered I had an account), but it doesn't seem there are a ton of answers on here for what I'm asking, or maybe I'm just looking in the wrong place? Thanks for any and all responses!
Thanks Heatherx5! It's reassuring to hear positive words back from you. I had some mild anemia when I was a teenager/young adult, but not once did anyone ever test ferritin levels. It's so surprising the things you don't know about your own body and health! I can't say I feel better after the first infusion, but I do think I notice a bit more mental clarity. I'm not so foggy and not losing as many thoughts. I'm really hoping that I'll get my energy back one of these days, as I have 4 kids, a husband and farm I need to be taking care of, and it's just so hard to do anything at all, let alone something as simple as a shower! From what I've been reading online, many of the symptoms I've had for possibly even years, and really couldn't attribute to anything in particular, are likely caused by low ferritin. I've never been tested for Celiac or Chron's, but I also don't have any of the symptoms of those either, other than the low ferritin. I'd imagine I should start up a quest to check for ulcers as I had them as a teenager, and/or H. Pylori. At least, that's what I've read on other threads. I've got chronic kidney disease though, so I believe that it's likely caused from that. I'm glad to have a good Nephrologist on my side! I didn't like him at first, as most specialists I see tend to be a bit pompous and disregard a lot of the symptoms that I've brought up in the past. This time (my 4th time seeing him) he finally took note and listened. My other labs are a little messy too, but mainly just the electrolyte balances from my kidneys playing up. The low ferritin was just such a surprise, and it seems that 4 is pretty darned low, but why would he have considered an actual BLOOD transfusion? That doesn't seem to make a terrible lot of sense to me.

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