I've recently had 6 iron infusions with venifer. I have an appt. to get my iron checked soon. My ferritin level was at 11.5 when I started. It was at 5 last year and I took iron supplements for 1 year and it only came up to 11.5. I am now having upset stomachs, diahhrea, stomach pain and it wakes me up in the middle of the night. It hits whenever and nothing settles in my stomach. I've read that iron overload can cause these symptoms as well. Has anyone had iron overload as a result of infusions? Do I need to be concerned? Tired of feeling sick and sick of feeling tired!!!
if the pills were working why would he do iron ivs? 10 is the low end but you would have gone up if you still took the pills im getting my blood tested next week after 3 and they say better to be safe what was your dr thinking doing all 6 at once before testing i am a 2 and my hemaglobin is 8.5 until i get the results back i have talk to another girl whos ferrtin went up to 1330 and has iron overload from 2 ivs
Thanks for responding. It is scarey to hear that you can get iron overload so quickly. I started at 5 and went up to 13 on Repliva, but then it dropped back down to 11.5 while on Repliva. I have been taking Repliva for over a year. He felt I was having an absorption problem and that IV's would take care of that and get me into the range I need to be. My hair is falling out, I've gained about 25 lbs. and I am exhausted.....I don't see a significant change in energy levels. I did a couple of days after an infusion. Since I've stopped I pretty much feel the same. The only thing I notice is my nails have grown for first time in years. I will go Thursday morning for my blood work. It is the only day I have this week. We shall see...Diana
11.5 is good so i dont understand why the ivs unless you kept going down my blood has been 9.9 for 11 yr at least until it was down to 8.5 nothing was done im going sat for my blood work im hoping i dont need anymore let me know
I finally got the results of my iron tests after 6 infusions. My ferritin level is at 63. That was as of two weeks ago. I had my iron drawn again yesterday to compare to see if there is a major difference. He feels it should have been higher. Although, he said 50 is good for children and he'd like to see me around 100 because my fatigue will not go away. I am exhausted and I have been tested for everything they can think of because diabetes, lupus, heart disease etc. runs in my family. I had part of my thyroid removed last year because of a growth and my levels are okay. What else is there? I do have fibromyalgia (very achy joints, abdominal pain (IBS), and frequent yeast infections). I've gained 35 pds, but don't eat any differently. I am 47 years old..any ideas?????? I just want to have energy...Diana
Diana--We are always talking about where our ferritin should be to be symptom free or for overall wellness. I can tell you that I am still fighting the fatigue. I am guessing that my ferritin is around 60'ish right now, I hope. When I continue to use up my energy, then the fatigue sets in. It used to last about 3 weeks, now it is around 1 week or so to recover. Then I start to feel well again and the cycle begins again. Like you, I have also been tested for all the things that you have had done and pages more that I don't even know what all the things are. Nothing ever comes up, so for that, I am grateful. But it gets a little scary not getting over something like this. After reading your post, and what numbers your doctor gives for you makes me feel a little better about how I am still feeling. I can also tell from my experience that when you have more than one thing going on along with the low ferritin it can in fact make the fatigue unbearable. Then the anxiety begins to set in because you don't want to fell so bad or know why it is happening. I think you got the double whammy with the fibro and it just takes more time to feel well again. I have been at it for well over a year now. I will also be 47 very soon and the docs say that age is another factor for getting well and that it just takes time. It's so hard to believe. I can say that I continue to get better even with the bouts of fatigue and they too are getting better. Keep us posted on your progress. FLFLOWERGIRL
The Following User Says Thank You to FLFLOWERGIRL For This Useful Post: choclo (08-12-2011)
Here is the new news....My ferritin was at 63 after 6 iron infusions...after two weeks...36..why?????? They now are looking at celiac disease..Does anyone have Celiac? I have gained 35 lbs..not lost weight....and my stools are somewhat normal. I have to go back for testing in 3 weeks. My symptoms are as follows: weight gain, bloating up to one full size more, night time peeing, sometimes brown urine, hair loss, fatigue, fatigue, fatigue, joint and muscle pain, sometimes really bad. Anyone who has these symptoms and has found an answer please help...I am tired of being poked and prodded....Thank you Thank you Thank you
The following user gives a hug of support to dgolred44: choclo (08-12-2011)
It sounds like your doctor is still searching for the causes of your anemia if he's going after a celiac diagnosis. Do you know what is causing your anemia at this point? That would be important information to know. How are your periods? If you are peeing alot at night, that can be caused by fibroids. If you are still menstruating and it's heavy, that could be the cause of anemia.
Also, how are you sleeping? Fibro can wreck your sleep. Heck, any kind of pain can wreck your sleep. My mother has fibromyalgia caused by years and years of statin use. Sleeping well is absolutely key to fibro, cfs, and fatigue. If you need help with this, talk to your doctor. It's too important to ignore. Are you taking anything for the fibro? One of the standard medications that doctors give fibro patients is a small amount of an antidepressant. Not for the antidepressant effects but because of a side effect of helping with sleep, when given in tiny doses. Even half a tablet will help put the pain away for the evening.
Last edited by ChickieLou; 06-17-2008 at 09:28 AM.
Thanks for getting back to me. They dont know what is causing my anemia. They thought heavy periods. I did have fibroids so last spring I had ablation (sp) to help clear up fibroids and heavy periods. Didn't stop the period problem at all. I dont sleep well. I have taken anti depressants and still do..it does help some symptoms. I am just afaid they are missing something bigger as my symptoms get bigger and more broad and my mom has lupus and RA and diabetes. When I read lupus symptoms, I swear that is what I have. They need to find a way to keep my iron up and nothing is working so that is why they are still trying to find a cause. ??? I am a little frustrated because this is going on like 4 or 5 years now.
So, if I am reading this right, you are still experiencing heavy bleeding even after the ablation and they are moving on to the next possible cause of anemia? I'm no doctor, but that sounds like it's the still cause of your anemia. You will likely always have anemia if that isn't fixed no matter how much iron you take and would account for your numbers being all over the place. It's like trying to fill a bucket with a hole in it if you are bleeding out every month.
True, it could also be Celiacs and you will need an upper endoscopy to confirm that (please don't start a Celiac diet based on a blood test alone - they are not very accurate but should be used as a first step only).
Good luck, be well.
Last edited by ChickieLou; 06-17-2008 at 04:03 PM.
dgolred44--Have you had the testing done to R/O Lupus and other things? That is a big one to get out of the way. Especially with your symptoms and family history. I thought that I had that too but it was ruled out so they say. That is if all the correct tests were done, guess I just have to trust that they were. I understand how you feel that is a long time to have things going on. But ChickieLou is right about the fact that you have to stop the heavy periods because you are always losing too much iron for your body to keep up and it will NEVER work. Good luck to you and keep us posted. FLFLOWERGIRL