Gosh, I haven't been on HealthBoard in so long, I forgot my password! 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!
First of all welcome back to the boards. Second yay that you have a Dr. that is doing his/her job! Is having anemia dangerous? If left untreated yes, but it sounds like you are on the right track to taking care of your problems. My ferritin was a 2 and some people here don't even have numbers that register. I would say within a few infusions you should be back to normal levels but that all just depends on you and how well the iron is taking. You are very lucky to be getting infusions they are the fastest way to build iron back up. I have never had an infusion but I read a lot here and most ladies seem to report feeling better within a weekish, but again that just depends on you. The iron is going right into your blood, right where it needs to be.
Anemia and low iron is a symptom of a larger problem but it could be a simple fix, where your not bleeding that can be ruled out but there are a few others you may want to have them looking into. B12 levels, need to be checked having low b12 can cause anemia. Celiac's disease, which is gluten intolerance and nutritional caused anemia, easy fix as well and all in a diet change. Anemia can cause an array of symptoms including anxiety/depression so I am glad you have something to take care of that. Hang in there and be glad that you have a great Dr. in your court. A lot of ladies here have Dr's who just brush this off as not a big deal.
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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.
Sounds like you are going through quite a bit. The x5 that is my amount of kids and believe me I know how you feel. My oldest has sure been a help and I don't know what I would have done w/o her. It's hard when you have all these responsibilities and walking up a flight of stairs makes you feel like you need a nap!
It could be from the kidney disease and iron not correctly absorbing. Maybe he just wanted to get you some iron fast and blood transfusion was an option. My Dr. said he was going to wait till my hemoglobin got to around a 7 before we did that and thankfully, I got my iron up and avoided all that. I just didn't like the idea of it at all. I would just stick with the infusions for now and see in a month how you are doing, I bet your numbers will shoot up and you will avoid it as well. I hate the brain fog so bad! I feel like I'm losing my mind sometimes. I had low b12 & D though too and that didn't help matters at all.
I have been battling this for 8 months, I think? I lost track of time. The last almost year of my life has been nothing but a nightmare. I just pray my ablation worked, the OB told me I can plan on taking iron for another year? I don't want to do this for another year!
I hope everything works out for you, keep us posted on how your doing and your numbers! I can't wait to see some good ones .
My oldest is a boy who will be 13 next Tuesday and I don't know what I would do without him either. We have a lot of animals, and he's helped me a lot by feeding calve and other chores that are just too much for me right now.
I'm going to do my best to avoid any sort of transfusion, as honestly, it scares the puddin' out of me. I used to donate blood, but I guess that's a thing of the past now. If I can't keep up with ME, I don't think I'll be able to keep up with donations. Oh, well.
I've only had the one infusion yet, and really don't feel any better yet, but I'm so hopeful that I'll suddenly get some energy one of these days, and that the next infusion might just be that one that brings it. I can't lie, I was a little disappointed that I didn't see dramatic or instantaneous results though with the first one. I'm impatient by nature, and probably shouldn't have gotten my hopes up.