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1Busiteacher 04-18-2011 06:32 AM

Frustrated with low ferritin
I'll try to make this long story short. On my annual visit to my cardiologist (I have left bundle branch with no symptoms, but family history of heart problems) last August, everything was okay except for a complaint of extreme fatigue. Therefore, he ordered blood work. A couple of things came back a little off, so he recommend I see my family doctor.

My family doctor didn't think anything looked too out of the ordinary, but recommended that I have a colonoscopy done due to family history. It turned out fine, but the gastroenterologist ordered more bloodwork to try and figure out why the fatigue seemed to be getting worse, along with other things like extreme cold, thinning hair, and severe constipation. This bloodwork (in December) showed that my ferritin had dropped to 5 from 11 (in August). He said I had iron deficiency anemia and prescribed oral iron, but said if it didn't work, we would consider an iron infusion.

After a couple of months of feeling even worse, I returned to my family doctor who decided that the oral iron was not being absorbed and recommended the iron infusion, since my ferritin was still between 5-6. The insurance would not preapprove the iron infusion, so my family doctor referred me to a hematologist. The hematologist did not feel that I was even anemic due to my hemoglobin being in the normal range, even though it was at the very bottom of normal at 11.9. (My hematocrit is on the bottom of the normal range as well.) And he also said that my ferritin level of 5 should not cause the fatigue and other symptoms I was experiencing. Therefore, he decided I needed to go back to my cardiologists to see if my heart was the problem.

Last week, the cardiologist agreed to recheck my heart and see if there was any changes since August. The nurse called to tell me there were no significant changes. Therefore, I have gone full circle with doctors. My symptoms have gotten worse to the point that I am lightheaded and dizzy at times, and I end up in bed every 4-5 days for an entire day. I spend more time correcting myself because I am not functioning at the speed or accuracy I once did. (I teach high school/college computer courses.) I really feel that my low ferritin is causing the problem and iron infusion may be the answer for me, but I don't want to overdose on iron or make things even more complicated. I'm sooooooo tired of being tired and frustrated!!! Any suggestions or help would be greatly appreciated!

jonnstar 04-18-2011 06:00 PM

Re: Frustrated with low ferritin
Try NSI Ferrochells 45mg.

It is a type of iron that is especialy well adsorbed by mouth. Best taken with a vitamin c tablet to enhance adsorbsion even more.

You can buy it online from NSI, it costs about 15 dollars for a 12 month supply.

azure7789 04-18-2011 11:02 PM

Re: Frustrated with low ferritin
1busiteacher...I had excellent fast results with Proferrin. Prior to using proferrin I used various forms of iron including ferrous sulfate and ferrous fumerate. Both of the ferrous supplements made me sick to my stomach and it was long and slow getting any improvement. A friend told me she moved her ferritin up from very low , around 8, in a few months. She said her hematologist had recommended the I decided to give it a chance. And, for me it worked too. You can find it online and there are also studies you can review.

TxThyroid 04-19-2011 10:54 AM

Re: Frustrated with low ferritin
I would request that your GP run a thyroid panel on you, and ask for an antibody test as well. Many of your symptoms can be from anemia OR hypothyroidism.

Good luck, living with that sort of fatigue is really hard.

jonnstar 04-19-2011 08:24 PM

Re: Frustrated with low ferritin
Also worth noting that just because one has low ferretin and fatigue, it doesnt mean they are linked, most people with fatigue have nothing that doctors can find wrong with them, they are just tired all the time.

Hopefully getting your ferritin up will help. I agree with asking for the thyroid test as well.

1Busiteacher 04-24-2011 03:23 PM

Re: Frustrated with low ferritin
Thanks for the replies and suggestions. I did have a thyroid test done last week and it came back within normal range. I am currently doing a test to check for bloody stools and have to have three BMs within 14 days to complete it. Unfortunately, I am always extremely constipated and have had only 2 BMs in 9 days, and I cannot take most of the meds (Vita C, iron, etc) while doing the test. Therefore, it has been a pretty rough week, as the symptoms seem to be escalating. I have slept most of my Easter away with a three hour nap, but still woke up with aches and twitching facial muscles. I just want to enjoy a normal life again without my kids not complaining that I'm always on the couch asleep. Is that too much to ask? (Sorry, guess I needed to vent today!:()

azure7789 04-24-2011 03:45 PM

Re: Frustrated with low ferritin
Sorry you are feeling awful.
I still think it is possible that your symptoms could be due to the low ferritin. This would really seem like a top priority. As I mentioned before when I had trouble getting my ferritin up over a two year period , I tried proferrin on a friend's suggestion and my ferritin started moving quickly. It is a heme iron and it is more easily taken up. There are other heme irons out there as well that you can consider.
About not going at least 1x a day.... You need to get things going there as well. Are you drinking at least 8 glasses of water, getting at least 30 minutes of exercise and eating fruits and veggies?
Don't despair I think you can help yourself a great deal.

1Busiteacher 04-24-2011 07:50 PM

Re: Frustrated with low ferritin
Thanks for the encouragement. I do drink all day long, some water and some diet coke. I honestly don't have the energy to exercise, especially since I have an hour daily commute to and from school and 2-3 nights a week I try to attend my kids sporting events. (I do spend a lot of time sitting and watching from the car during the events.) As soon as I finish this test and can start back on meds, I will try any and all of the iron that has been recommended, but am a bit nervous about becoming even more constipated. Nevertheless, thanks again for the encouragement.

Fitness Seeker 05-20-2011 01:07 PM

Re: Frustrated with low ferritin
Hi Busit: So sorry to hear about your not feeling well. I, too, have very low ferritin levels like you. I got diagnosed w/ severe anemia 3.5 yrs ago inadvertently. Also had bad monthlies and excruicating ones. Later found fibroids, had myomectomy to remove them 2 yrs ago. After the surgery, my hemo fluctuates (within range/borderline/low out of range). All this time the family MD thinks i am still anemic. Iron stores super low , they have fluctuated and gotten worst the past 2 yrs after my surgery. I got impatient w/ my family Md and decided to go elsewhere. Symptoms of fatigue, weakness, out of breath walking up stairs, can't climb uphill like i used to.

So after seeing a gyno today she tells me she suspects it's hypothyroid issues and that i DON'T have anemia anymore based on the hemo and hematocrit (even tho hemo is sometimes out of range). She says it could be thyroid related, although i don't show visual symptoms and it can't be felt. She had me see an internist and he ordered an ECHO test for me. We'll see how that goes....

I'm interested to hear the diagnoses and symptoms of others having the same problem.

Now, this Proferrin this OTC or does it require a prescription? Has anyone relied on food sources to up the ferritin levels?

teri579 05-20-2011 07:02 PM

Re: Frustrated with low ferritin
1busyteacher; I never take my iron without a stool softner! I have my iron in my pill separator and each iron pill (I have to take 3/day) is accompanied by a stool softener! I've also been eating a healthy salad with mixed greens and purple lettuces with either chicken, steak or salmon on top every day for lunch! I swallow my iron pills with grape juice (vitamin C), and stay away from any dairy for 3 hrs after taking the iron so that it can properly absorb.

My Ferritin level went from a 3 to a 10 in only 10 days on the iron (and a prenatal vitamin every day)! My hemoglobin levels are really low too though, that was a 6.9 and rose to an 8.4 in that 10 day period on the iron & a prenatal vitamin! I know their still low but I'm so excited that they rose so much in a short period of time.

I sound like an infomercial ... sorry!


1Busiteacher 05-22-2011 07:03 AM

Re: Frustrated with low ferritin
@ Fitness Seeker and mjinteriors,

Thanks for your input and understanding. It's so good to know there are others out there who understand when most of your friends and family can't understand why you sleep and have no energy the majority of the time. Here is an update on what is going on with me:

The hematologists finally called me back after his vacation and receiving the report from my cardiologists. He still insists that I am not anemic, but wanted me to take 325 mg. iron a day and get blood work checked again in two weeks. He also wants me to do a sleep study due to my fatigue, but I think this is a total waste of time and money since I have no other symptoms of sleep apnea. Therefore, I started taking that plus tried taking the heart meds (Lisinopril) I previously had been given from my cardiologists that made my blood pressure drop (but only every other day instead of daily). Strangely enough, this is also about the time I started having diarrhea 3-5 times a day. This continues still. Towards the end of the two weeks, I also had a follow up with my gastorenterologists who was satisfied that I no longer had constipation, but decided to run blood work to check for Addison's Disease since I was going to get blood work done anyway.

After 2 weeks on the iron, the blood work showed that my hemoglobin had dropped to 11.8 (very bottom of normal range), ferritin went up slightly to 8, hemacratic is still low and always has been. The study ordered by the gastroenterologists showed my cortisol is low which indicates adrenal insufficiency possibly leading to Addison's or Cushing disease. The hematologists called with the results and says I'm still not anemic, but now wants me to double my iron to 650 mg a day and if possible, triple it. He still thinks I should do the sleep study, but wants me to talk to my family doctor about that. He also think the low cortisol level could be causing a lot of my problems as this is the hormone that supplies adrenalin to all the organs (if I understand it right). Called the family doctor and they haven't called me back yet. They are notorious for that and it is frustrating. So I am still in the stage of trying to find out what is going on and what exactly to do to fix it. Thankfully, school will be out in a week and I will have much more time to rest, but until then, the end of school with finals and graduation is one of the most stressful times. Well, thanks for listening and your input again. Oh, one more thing. I am trying very hard to eat iron rich foods as much as possible and trying to be the best patient I can be, but I admit it's tough.

Fitness Seeker 05-22-2011 08:44 AM

Re: Frustrated with low ferritin
Hey Busi: hang in there. I hear your frustrations as I have had them for the past few yrs myself.They may tell you that you AREN"t anemic (that's what i was recently told by my gyno) b/c your hema is up (even if it's borderline or slightly out of range-under) they say your'e not anemic. My ferritin is low, lower than yours, at 5. It has dropped from 9 to 7 to 5.

I have also been ordered some Echo work and sleep test. I know i dont have apnea. I have never snored in my life. Now i make a very slight noise when i lie down. But the pulmonary/cardio work may not be related to my previously anemia/low ferritin problems. Will keep you updated. hopefully we get some answers soon...:)

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