100 comments (Add your own)

1. polly wrote:

I believe I have anemia, but my blood work doesn't make sense. My main symptom is feeling cold, and it has got to the point where the circulation to my toes and fingers is cut off in response.

Other intermittent symptoms include chest pain, can't sleep because my heart is racing, constipation, and pain in the upper right abdomen. The medics have done front line tests and come up with nothing, except depression. Of course, I feel low, I don't feel particularly well a lot of the time.

My serum ferritin was 19, but this test was done on a day when I had swollen finger joints and then my whole immune system went into overdrive and I had to calm it down with antihistamine; does that mean my true level could be even lower?

When I started supplementing with iron, there was a dramatic improvement to how I felt - within 30 minutes of eating beef washed down with iron water, I suddenly got restored circulation in my toes which started to hurt as they warmed up again. I woke up the next morning feeling not just okay, but happy.

However, my hemoglobin reading is 15. What's going on? The symptoms match everything on your chart. But low ferritin and normal hemoglobin doesn't match with anything. Can the tests be wrong? I'm at my wits end with my doctor, who just wants to give me anti-depressants. Please help.

Sun, March 13, 2011 @ 4:30 PM

2. Lisa wrote:

I also have low ferritin with a normal hemoglobin. This is called iron deficiency and iron supplements and change in diet can boost your ferritin levels.
Your ferritin level may have been increased because of your inflamation.
You should probably go back on another day when you have no inflamation and have the test repeated to know for sure. The next stage after ferritin (iron stores) have been depleted is iron deficiency anemia where your red blood cells in the marrow are made smaller and therfore cannot carry as much oxygen.
My ferritin level is critical and I have many unpleasant symptoms everyday including depression, pain in joints, numbness in feet and hands, extremely painfull shooting pains in arms, legs and tougue (yes, my tongue) that wake me up at night, restless leg syndrome, extreme fatigue...and the llist goes on.
I got my doctor to agree to an iron infusion and I am looking forward to seeing how this will affect me.

Tue, March 15, 2011 @ 8:38 AM

3. Knowpeace wrote:

Hi Lisa, I have had several iron infusions. They help to ease some of your symptoms as your numbers get better, but that can take a little while. I am prone to allergic reactions, but did not have any. I lay in a recliner, the nurse offered a warm blanket :-), they set you up and you get your iron. I'd get a 'funny stomach' a couple hours after, but I didn't get sick. I just didn't want to eat. The next day I usually slept and watched tv because I'd ache. I have discovered that those symptoms likely had nothing to do with my infusions, but I'm sure you feel that way already because of your anemia. I wish you well. Ask questions, trust your nurse, and relax. It's not a bad experience.

Thu, April 7, 2011 @ 10:23 PM

4. Ronna Sneary wrote:

Hi Lisa, I have just started my first series of iron transfusions yesterday. I am iron deficient. My iron level is 4, my hemoglobin is 8, and my platelets 66. I agree with Knowpeace. The only side effects that I have experienced are swelling in the feet, ankles and hands, and not wanting to eat. I go for my second transfusion today. I know this will take awhile, but hopefully it will help me. I hope it helps you too!!!!

Fri, April 8, 2011 @ 8:35 AM

5. Pat O wrote:

Hi everyone. My name is Pat & I am 65 years old. I have spent all day researching causes of low ferritin levels and those searches have led me to this site. A brief history of my medical saga is that, although I was often sick as a child, after reaching puberty I was disgustingly healthy until the day after Thanksgiving in the year 2000. That Friday I woke up feeling like I'd been run over by a truck during the night & haven't had any long term improvements since. After the first 18 months I was dx'd with an auto-immune condition - Mixed Connective Tissue Disease with an overlap of lupus, scleroderma and sjogren's which was later changed to a definite Systemic Scleroderma diagnosis. Usually skin involvement is the first symptom but I have more of less skipped that part & gone right to organ involvement - esophagus motility, gerd and intestinal inflammation as well as some beginning pulmonary lung tissue hardening.However, overall, the autoimmune stuff has not been as bad as later developments. I next began having TIA's which led to discovery of, not one but two congenital heart abnormalities which were allowing clots to pass through the heart to the lungs & onto the brain. So, these holes were patched up by a fancy new procedure in 2004. Until 2006 I was doing ok with a lot of meds, diet, exercise etc. Then I started having neuro problems and after another 18 months of debilitating symptoms including horrible vision problems, falling over on my face in public places, & staggering around like a drunk & after 5 brain MRI's it was discovered I had a condition called Chiari I which is literally your brain falling out of your skull & pressing on your brain stem which can cause all sorts of really bad things to happen. This was also deemed "congenital" & I was lucky enough to have the one of the best neuro surgeons in the country & he corrected this with a really nasty surgery. Morph to Jan 2009 when I woke up feeling like the truck that hit me in 2000 had backed up over me again. Since then it's been one thing after another including (finally) extremely low ferritin, B12 & D levels BUT with all other blood work being within the "norms". My primary & rheumatologist both thought that I was probably having a GI bleed due to the scleroderma and NSAID use so went back to the GI doc for tests - all ok , then onto scans & MRI's to rule out any gyn cancers etc - again ok. So, my primary bascially put me on supplements including iron & after a few months the b12 & d were back to ok & the ferritin was up to 15 & she then discontinued that even though I was still feeling horrible. In the past year I've been dx'd with Polymyalgia Rheumatica and then Temporal Arteritis which is inflammation of the connective tissues and cranial arteries & have been up & down on high dose prednisone therapy with mixed results.
Thank you for sticking with me so far - that wasn't as brief as I intended - NOW, my questions......since Christmas my low energy level has been going farther down & this week I had my primary do a ferritin check & it came back as SIX!! She said to start iron supplements again but (again) had no explanation as to WHY this keeps happening - she even said to me that "extreme fatigue is not caused by low iron levels". I think this is an unacceptable answer & is mainly because she is as frustrated at this as I am but I'm done with this being a "patient" patient. I "think" it might by Amenia of Chronic Disease but might be Iron Deficiency Anemia instead & it sounds like treatment is different for each. Can anyone tell me what type of doctor I should see to get to the bottom of this?? Is it a Hemotologist? an Endocronologist? or someone else...??? Also, if you have any other advice for me regarding how to deal with this horrible fatigue - any type foods (I don't eat much red meat because it kills my stomach) but am not a vegetarian either. It's gotten so that I cannot exercise at all - walking down my driveway for the morning paper seems like a 5 mile run - & the lack of exercis is just making all of my autoimmune and inflammatory problems worse so I'm ready to try just about anything to get back to my version of normal.

Again, thanks for listening to my soap opera & any help will be much appreciated.

Pat

Sun, April 10, 2011 @ 12:00 AM

6. TOM G. wrote:

PAT.......DO A GOOGLE ON D- RIBOSE POWDER ............(SPECIAL VITAMIN FOR LOW ENERGY ON THE CELLULAR LEVEL)......HELPS MAKE ATP........GREAT STUFF FOR PEOPLE WITH AUTO-IMMUNE PROBLEMS SUCH AS FIBRO-MYALGIA, COLITIS AND POSSIBLY WHAT YOUR SUFFERING FROM......DO SOME RESEARCH AND YOU WILL BE AMAZED AT IT'S PROPERTIES.....I ORDERED SOME FOR MY WIFE ON AMAZON.COM, AFTER LISTENING TO A MEDICAL DOCTOR GIVING A SEMINAR ON ALTERNATIVE MEDICINE......HE SWEARS BY IT!......YOU TAKE TWO LEVEL TEASPOONS (5,000 MG) PER DAY.....USE WITH ANY DRINK YOU LIKE ........I BOUGHT (2) 8 OZ. BOTTLES FOR $41..........EACH BOTTLE IS GOOD FOR 22 SERVINGS.....WILL KEEP YOU POSTED ON THE RESULTS.....

Sun, April 10, 2011 @ 1:20 PM

7. Pat O wrote:

THANKS TOM!! I'll certainly give it a go..Hope this helps your wife & me too. I figure I spend so much money on useless tests that tell me what's not wrong that any money spent on something that just might help is money well spent!

Pat

Sun, April 10, 2011 @ 4:47 PM

8. Nancy wrote:

I have a B-12 and Iron defieiceny and recieve monthly B-12 injections and ferritin infusions as needed. I have developed some significant memory issues and wonder if this may be associated with the iron deficinies?

Sun, May 1, 2011 @ 5:35 PM

9. Faith wrote:

My doctor suspects mds altho 2 yrs ago marrow biopsy was normal. Have had severe id anemia 3 years or so. Several blood transfusions and iron infusions. Yesterday, received another 1000 mg iron infusion. (Ferritin was 3, hgb 8.) This lasts about 3-4 months. Also had the 250 mg infusions over several weeks last year. Also lasted about 3-4 months.
Doc is flumoxxed ... Have also had ,MANY tests that ruled out any internal bleeding. Any ideas?

Fri, May 6, 2011 @ 12:24 PM

10. TOM G. wrote:

COMMENT FOR PAT #7..........D-RIBOSE REALLY DID A NUMBER ON MY WIFE PAT........SHE HAS COMPLETED TAKING A BOTTLE OF THE POWDER THE PAST 3 WEEKS AND I CAN'T KEEP HER DOWN.......SHE HAS MORE ENERGY THAN A PUPPY 3 WEEKS OLD...........BESIDES WORKING OUT AT A GYM 3 TIMES A WEEK, SHE WALKS THE DOG TWICE DAILY, CLEANS HOUSE , COOKS AND SHOPS LIKE THERE IS NO TOMORROW......HOPE YOU TRIED IT AND GOT THE SAME RESULTS.......GOOD HEALTH, TOM G.

Tue, May 10, 2011 @ 2:13 PM

11. Faith wrote:

Update -- took an ambulance ride to ER last Thu. Had to get 2 units blood, spent a night in the hospital. Still a conundrum ... was fibby, shocky, unable to sit or stand ... Now after blood transfusion, I feel better. Still looking for clues about causes. Any ideas, anyone?

Sun, May 15, 2011 @ 6:32 PM

12. Mommy2boys wrote:

I was told, over a year ago, that I have iron deficiency. I have been on iron supplements ever since. My numbers keep falling and symptoms are worsening daily. My last iron level was 25 but hemoglobin has stayed within normal range (last taken on Wednesday June 8, 2011) . As of Wednesday of last week, I have been blacking out, dizzy, weak, feeling nauseated, completely exhausted, headache, and feel like my insides are always shaking. For the past few days I have been in tears and feeling completely helpless. I feel like there is something really wrong. Is all of this normal? Should I be worried that something else is wrong?

Sat, June 11, 2011 @ 2:56 PM

13. Kate wrote:

Hi Mommy, I have B12 and iron deficiency anemia. I take b12 injections every two weeks and 100 mg of iron per day. My iron and ferritin were really low and I felt what you are describing. That internal shaky feeling that made me think I was having constant anxiety (went away as my numbers got better). Wanting to cry all the time over nothing (went away as my numbers got better). I also get weak and feel nauseous often (still experiencing). Exhaustion, headaches both symptoms I was having as well (still have but less severe). As my iron, ferritin and B12 have gone up, most symptoms have all improved. I still have RSL and joint/body aches and am cold all of the time, especially my poor feet. Even when it's 90 degrees out, my feet are so cold! Keep after you doctor to get your numbers up. I think we forget what normal feels like but your doctor should be working with you to feel normal. Remove the symptoms by fixing or treating the cause- not the symptom.

Sat, June 18, 2011 @ 1:02 AM

14. Kate wrote:

I take 1000 mg of iron per day not 100. That was a typo.

Sat, June 18, 2011 @ 1:03 AM

15. Erin wrote:

I have been in the same place as Kate. Doctors can be less than helpful when it comes to iron and anemia symptoms. I have tried dozens of iron formulas and had a bad time with most of them. I have had good results with "gentle iron" by Solgar, 25mg tabs. I take two 25mg iron capsules in the am and 2 at noon and 2 in the pm. I take 400mg of Magnesium and 1000mg of Vitamin C with the iron. I also take a iron free high B vitamin multi-vitamin. I have not had significant change in HGB, HCT or other CBC numbers, but my ferritin went up a lot, 16 to 44. My iron sat and iron are still at 5 and 7, they never seem to improve, with anything. I do feel less joint pain, less RLS, less weepy, but I do still have headaches and fatigue. I would not take this much iron without my doctor's supervision and routinue iron labs, it could be unsafe or deadly for some people. Finally I am having procedures to check for GI bleeding. I am also at a loss for understanding why iron supplements aren't working as well as they should, and why I feel so rotten a lot of the time. So while I search and try to feel better I have had good luck with the gentle iron and the above combination of minerals and vitamins, it is not a cure, but it has been helpful for me. I also have a strict dairy free diet and keep a lighter weight. I hope this information may be helpful.

Fri, June 24, 2011 @ 10:51 AM

16. Julie wrote:

I have been trying to find out information about what the 'normal' recovery time for iron deficient anemia after receiving iron by iv should be. I had been mildly anemic for several years (and I have Sjogren's Sydrome and lupus like one of the people above) and tried oral iron but it didn't do anything. In February, my hemoglobin was 9.5 and hematocrit was 28.8. In May it was rechecked and hemoglobin was 8.9 and hematocrit was 27.7 and my iron level was 3 so my primary care doc sent me to a hematologist.
I have to be honest and say that I wasn't super impressed by his personality (he kind of dismissed what my husband and I said about symptoms) but I didn't want to wait to find someone else because I felt so crappy. I had five treatments over the course of 11 days (and had some of the stomach upset and aching joints that were mentioned but I was okay with it if it worked) and on the last day of treatment, my hemoglobin was 10 and my hematocrit was 31.4. Maybe I'm being unreasonable about my expectations but I was hoping that it would be higher. I have felt a little better since the treatments but I'm having trouble evaluating if it is the treatment or the fact that the school year is over and I'm not teaching 8 hours a day at the moment. I'm trying not to be whiney but fatigue and aches aren't something that you can show someone else so while everyone started out as sympathetic, they're not as much now.
I have been searching everywhere to find out what the rate of increase over the course of the treatment is generally but can't find anything. The hematologist told me that it would work because it didn't have to go through my digestive system but I want some actual specifics. i was diagnosed with lupus 15 years ago and everything that could be weird has been at one time or another but it's so frustrating to be patted on the head and told to go wait. If I had listened to that advice 15 years ago, I would still be diagnosed as 'depressed due to multiple miscarriages' rather than finding out that the miscarriages came from the lupus and that I would not carry to term without medical intervention. I've had two children since the diagnosis and feel to this day that I had every right to be depressed about losing children and still be able to say that something else wasn't right. I hate it when people look at a person and say, 'oh, she's depressed,' instead of 'well, I would probably be depressed too if I hurt everyday for 17 years' - it took two full years of pain, hospitalizations, kidney stones and other issues to force my insurance company into sending me for the tests that finally led to the lupus diagnosis.
Anyway, sorry for the rant. As odd as this may sound, it was sort of a relief to find something after days of searching and that other people are also having some difficulties but are still doing their best to live their lives. I wouldn't say I'm Miss Sunshine but when I'm not exhausted and hurting, I do love teaching, love my kids and doing stuff with them, and love being alive, sick or not. So if you got lost in my narrative - I'm trying to find a place where I can find out what rise in blood levels I can look for after 5 IV Iron treatments. The doctor is going to check 30 days after treatment which is the week of July 19. Quite honestly, since I don't really care for his bedside manner, I want to know what the numbers should be if mine are different.
If someone knows a good website where I can find more than generalities, I would appreciate it. Thanks!

Fri, June 24, 2011 @ 8:10 PM

17. Mommy2boys wrote:

Kate,
Thank you for responding. It is good to hear that I am not alone!

A quick update. I have seen a gynecologist and I will be going to pre-op the first week in July. I have by diagnosed DUB (dysfunctional uterine bleeding). Evidently I have such a heavy period that no matter how much iron I take, I lose too much blood every month for it to do any good. I have been taking only 50 mg of iron daily due to intense nausea. I have found that any more than that and I can't even eat that day or the next (I have spent hundreds of dollars on different kinds with no relief). I have started taking Emergen C everyday with my iron and that seems to give me a little more pep (not like I can go go go, but it helps get a couple loads of laundry done!).

Julie,
I completely understand where you are coming from. I have been fighting the exhaustion battle for almost two years. At first, my husband was very understanding. However, now it has turned out to be a huge burden on my entire family. Because my symptoms aren't visible (like scarring or bleeding would be) my family often forgets how rotten I really feel. Recently, friends have decided that I need to be seen for depression. I don't agree. I think that I am so down because I am sick. It is hard to be excited about things when you feel so bad. I can't wait to start feeling better on the inside and go back to enjoying life with my family!

Sat, June 25, 2011 @ 11:42 AM

18. Tanya wrote:

Hi. I went to my GP last week as I've been feeling very tired physically, and emotionally finding little things very hard to cope with for about 4 or 5 days each month at about the same time in my menstral cycle. My doctor gave me a blood test and wrote to me saying that my blood stores were low and that I should take one or two 200mg iron tablets a day for a few months. I've been taking two a day for a week and they are brilliant - I didn't realise how little energy I had and I'd just put my generally grumpy mood down to psychological issues. So - my question - as I think this is a problem related to blood loss and as my fatigue was noticably different at different times of the month, can a blood test that was taken when I was sort of ok be accurate - i.e. can my iron levels fluctuate every day or are they a pretty constant sort of thing? Also if they do fluctuate then It doesn't seem that sensible to stop taking the tablets after a few months if I'm still losing too much blood. Also (sorry) two tablets is double the dose of one - could I be taking too much iron? Thank you so much.

Fri, July 1, 2011 @ 11:05 AM

19. JG wrote:

My husband has had a number of health issues in the past couple of years. He was diagnosed with Type 2 Diabetes about 3 yrs ago. He lowered carbs & sugar in his diet, started exercising regularly, lost aoubt 45 lbs, got the diabetes & cholesterol levels into better range. But he has been placed on a lot of meds to control high blood pressure and cholestoral (3 different drugs for each), plus 1 med for the diabetes. About 2 yrs ago, he saw a nephrologist because our primary care doctor suspected his kidneys were being affected by the high blood pressure and diabetes. He was diagnosed in Stage 3 of Kidney Disease. Then 15 months ago, he began experiencing anxiety & panic attacks, also digestive problems with pain, pressure and discomfort in his stomach. In about a month he lost an additional 15 lbs., experienced extreme insomnia, and depression. About this same time the nephrologist told him his iron level was too low and the best way to improve it was iron infusions; he had 1 per week for 4 week. However, the other syptoms continued. After extensive tests to rule out gall bladder, colon problems, etc, and 2 trips to the emergency room, he saw a cardiologist. The cardiologist found 2 blockages in his main artery and placed 2 stents in the artery. The pain & discomfort improved immediately; however, due to the insomnia, depression, anxiety, etc, doctors had now added 3 more meds (1 for anxiety; 1 for depression, 1 for insomnia). The cardiologist added a blood thinner & increased his daily dose of aspirin from 81 mg to 325mg. Iron levels were within normal limits for 8-9 months after infusions. Now they are at record lows; all other numbers for cholesterol, high blood pressure, and diabetes are great, But he is now taking 11 prescription meds, aspirin, plus viatmins & supplements, and is scheduled for another 4 weeks of iron infusions. I'm concerned that possibly the medications and all the doctors are causing as many problems as they are helping. He now sees a primary care doctor, cardiologist, nephrologist & psychiatrist every 3-6 months each.

Sat, July 9, 2011 @ 11:16 AM

20. Dani wrote:

Hi poli
Test for hypothyroidism

Sat, July 9, 2011 @ 11:23 AM

21. Dani wrote:

Iron infusion iron gluconate x iron sucrose

After 2 iron infusions with ferric gluconate I had a infusion with iron sucrose.
NO COMPARISON!! With Ferric gluconate I had so many side effects ( nausea, cramps, diarrhea, malaise, extreme fatigue) iron sucrose: nothing at all!

Sat, July 9, 2011 @ 11:34 AM

22. Melanie wrote:

Hi Mommy2boys and Tanya. I had fatigue, no energy, low iron etc. most of my adult life. And it's so true--your family starts to get frustrated with you, because you don't "look" sick. After four children, I also had excessive monthly bleeding (thought it was "normal" perimenopause stuff!). My gynecologist performed a uterine ablation and it was like someone flipped the energy switch on! I also found out I have PMDD (think PMS multiplied by 1000!), which is being helped greatly by Cymbalta. I urge any woman with heavy menstrual bleeding and low energy/fatigue and low iron, Hb or ferritin levels to find a gynecologist who understands the connections between all of these things.

Mon, August 22, 2011 @ 10:29 AM

23. Melanie wrote:

Hi again. This time I am hoping someone can give me advice about my 15-yr old son. His entire life, he has had excessive sleep needs. He will sleep 12 hours a night, be exhausted all day, nap for 2-3 hours at various times during the day and still be grouchy, and then go to bed and fall asleep right away. Until puberty, he was also chubby, even though his diet was (and still is) very good. For the past 6 years, he has seen numerous doctors at the best children's hospitals, had sleep studies, bloodwork, lung function tests, EKGs and psychoeducational testing. This is what the doctors came up with: excercise-induced asthma, GERD, periodic limb movement disorder (PLMD) and ADD. He has been on provigil, Adderall, clonidine, levo-dopa, asthma inhalers and Zantac at various times over the years. We would see temporary improvement, but he hated the side effects. We have discontinued all of the meds at this point. Finally, a doctor paid attention to the periodic limb movement disorder and had my son's ferritin levels checked (Before, bloodwork only checked for Hb and hematocrit and they were always normal). Sure enough, he has low ferritin (first result was 4 mcg/L). He went on iron supplements, and ferritin got up to 15 mcg/L after 3 mths. His PLMD improved minimally, based on sleep study results, and the fatigue and ADD seemed to be helped by Adderall. The doc said he was satisfied with this, but couldn't answer my question as to why his ferritin levels are low. So, here is my query. Is iron deficiency without anemia the main problem we should be investigating? Based on the hours of research I've done, it seems like many of his diagnoses could arise from his low ferritin levels. I'll throw in a few more things--he has always been a huge milk drinker (24+ oz a day), has occasional migraines and has had two dizzy/fainting spells in the last year. These three things can also be linked to iron storage or absorption problems. I would greatly appreciate any advice on what kind of doctor we should see (hematologist, neurologist...) and the next step we should take to unravel this increasingly frustrating situation for my son and us (he essentially is stumbling through life half asleep). Thank you!!

Mon, August 22, 2011 @ 11:05 AM

24. Mommy2boys wrote:

Melanie,

I want to say up front that I am not a Dr. and my medical knowledge is only based on experiences of my own or that of my family...

Having said that. We found out about 8 months ago, through our own investigation, that my nephew (12 years old) has a milk intolerance. He does not get really sick or have hives or anything like that. However, he stays tired, irritable, and we noticed that he was gaining weight around the middle. I have first hand knowledge of food allergies and suggested to my sister she put my nephew on a milk free diet. By milk free, I mean all milk... even the milk that is found in processed foods (to know if it is there for sure you have to learn how to read labels). Within about 4 weeks we noticed a huge difference in his weight and attitude. His waist line decreased and he wasn't so quick to snap. His attention level and tolerance level both increased. That left us with the sleep issue. We started him on melatonin (I would not suggest this without talking to a Dr. because melatonin could interfere with hormone levels and cause different issues).

I guess the one sure thing I would want to check is B Vitamin levels. Have they done that yet? Aside from that, I would try to see if it is something that he is eating. I know it sounds like a stretch, but you would be surprised how much things we eat can affect our bodies! The first think I would cut is milk. It takes about 2 weeks for milk to leave your systems so you will have to be milk free longer than 2 weeks to see any results. If you are interested in trying this, let me know... I have taken two kids and myself through this process and will help if you want.

As for what doctor to see next. Tough one! I have found that even when you go to the same kind of doctor, with the exact same symptoms, you can get a different diagnosis and a different action plan. For instance, my sister had been having major stomach issues. She went to 3 different GI docs. It wasn't until the last one that she found out she has a rare bacterial infection, Strep G.

Best of luck to you and your son!

Sun, August 28, 2011 @ 3:02 PM

25. Valerie wrote:

Hi! Wow I have been have huge revelations about my "low iron!" Doctors have told me for years to "just take iron pills, you're a little low on iron." Now at age 53, I find that I am not even absorbing all that iron in pill form. I also had no knowledge of all the foods that inhibit iron absorption until I found this website and did further research. No doctor ever even said you have anemia, it was "you're just a little low on iron." After another recent blood test I was told I had low iron and I finally challenged what I was hearing and said I take iron supplements regularly, how can this be? The NP finally did listen and did follow up iron tests. Turns out I had a very low iron binding factor-40 when it should be close to 100. I started having numb/cold feet a few years ago and thought it was neuropathy- it is not- it tested negative and my quadriceps fatigue after about an hour of walking. The last doctor said to just wear compression shorts and never checked blood issues. I am now ruling out spinal stenosis before I say this is from anemia. Even my NP who is following up to rule out other neurological causes didn't treat the anemia that seriously. I have had to find resources like this IDI website on my own. I did start taking liquid iron instead of pills and that helped a little to raise my numbers. Now I am watching all the foods that inhibit iron absorption. I now realize I have to demand followup treatment and testing and perhaps go to a hematologist. Any other ideas are welcomed.

Sun, September 11, 2011 @ 6:41 PM

26. Valerie wrote:

OOPs! I need to correct myself in my last post. My serum iron was only 40 and should be about 100. My iron binding factor was also low.

Mon, September 12, 2011 @ 5:59 PM

27. Elizabeth wrote:

Have just found this website. Could someone advise me if I have anemia. I am on ferrous sulphate 325mg twice daily prescribed by my consultant who has said that my serum ferritin is low. It is 26. Have been to see another consultant and was asked as to why I was taking iron supplements as my iron level was normal. I had been told by the consultant who prescribed the iron that it would take 6 to 12 months to restore my iron levels and to feel better. But now I am totally confused as to whether I should actually be taking iron supplement or not. Could someone please advise.

Thu, September 15, 2011 @ 6:26 AM

28. Marty wrote:

I have been under the care of a gastroenterologist since 1986 for Crohn's disease. I also have iron deficiency anemia. I had a bone marrow biopsy done and the biopsy showed "0" iron in the bone marrow. My hgb is slightly low, 10.6 as of last week but my ferritin level stays between 1-3. When my ferritin level is low, I have no energy, itch all over, extreme shortness of breath with exertion, and have extreme muscle & joint pains. I get iron infusions occasionally but only when my hgb. is below 9. My doctor states he doesn't want to give me iron infusions very often "because it could have serious side effects" I can't believe any side effects could be worse than the symptoms I'm having now. I can truthfully say the iron infusions make me feel like a different person. I get 3 doses in 3 days. After the 2nd infusion, I can tell a huge difference in my energy level. I told the doctor I'm going to start bootlegging the iron if he won't give it to me when I feel I need it. I highly recommend iron infusions!

Mon, September 19, 2011 @ 3:15 AM

29. candyt wrote:

I am a 64 yr old diagnosed with primary (genetic) hemochromatosis. Initial treatment was phlebotomy (only 2 1/2 units). Prior to that I also had been diagnosed with chronic Depression, Chronic Fatigue Syndrome and have had weight loss surgery. Fatigue has been a constant and it gets harder to manage My ferritin stays low and has gotten down to to 2 at one point. In the past I was treated with REPLIVA twice with good results, but it has been removed from the market (can't find much info on why) and I do not absorb oral iron. I have had iron infusions several times, but they don't make me feel much better. Has anyone else had similar problems?

Thu, September 29, 2011 @ 12:21 PM

30. Tania wrote:

I have had low ferritin for years. Levels of about 3-9. I have tried every supplement on the market, and my levels are not increasing ( I can imaging what they would be like if I had not taken any supplements). I feel like life is going by, and I can not catch it. I feel like I am going crazy. I am so tired. I am working out, but have gained no muscle in a year. My cardio is horrible. I even feel that certain fabrics on my skin are intolerable. The always wanting to move my legs is so frustrating as well. I am set to have four Venofer infusions, one every two weeks. Does anyone know how long it takes to work? I have two young children, and a husband who need me.

Wed, October 12, 2011 @ 4:53 PM

31. Kim wrote:

I don't see on here where people are being checked for Celiac Disease. This can be done with a simple blood test for transglutaninase Antibodies (tTGA) . This is the most common cause if you can't get your iron levels to increase with supplementation and there is no obvious cause found, i.e. bleeding. Quite possible to be an asymtomatic celiac. My husband has it and only had neurological symptoms, no gut symptoms at all! The villi in the small intestine are damaged and therefore cannot absorb the iron. Must be on a gluten free diet in order for the villi to grow back and takes strict adherence to the diet. It takes a few months for the villi to fully recover so be patient. Googleq celiac disease and anemia. Not many docs are very good at looking for this.

Wed, October 26, 2011 @ 4:26 PM

32. Marcie wrote:

Hello,
New to the site and very frustrated and looking for anwsers, which I guesseveryone is. Dx with Iron def March '10 but decided to try to boost myself with diet. Plus was sick of seeing physicians and having tests (had liposarcoma-no longer have to do frequent f/u-Hey). Anyway had low ferritin/iron levels but hct/hgb were low but never got to bad considering how low my ferritin level was (4). After failed oral started IV Iron & finished 8 infusions (they changed med 3x-once due to a reaction & the other was the change on formulary). Saw my doc who decided on maintenance therapy. I felt better as well and my blood actually was getting red instead of black. Prior to starting maintenance which is every other week Iron infusion for 10 wks I became symptomatic (extreme, very emotional, palpitations, very short of breath, etc.) & y blood was blood was black (noticed when IV was started) Saw the doc who put me back on every week for 10 wks of Iron infusions. Now that decision was made because I called & was concerned on how I felt because my labs were never different. Basically my hct/hgb in normal range as well as my iron/ferritin & TIBC. They could use a boost & be higher but were in normal range. The one value TIBC saturation % basically though has never changed (been very low-from 2 to an 8). I asked why & was told they do not know. My concern is whether they are missing something and maybe I have something else going on. Being worked up for heavy menstrual period for cause but nothing unusual. I am perimenopausal and bleeding slightly more but never really had any issues with my reproductive. Always heavy periods but not convinced that is the culprit. The GI workup is (-) so what else could it be and how do I get it worked up to know for sure. Any ideas or suggestions? Seeing a hematologist but thinking I should see someone else (different speciality) any ideas on that as well.
I thank you in advance for reading & possibly replying to this post. Best to you all n your own challenges with this iron dilemmia.
Marcie

Mon, November 7, 2011 @ 10:35 PM

33. Buffy wrote:

I've been experiencing symptoms of anemia but can't seem to get my doc to take me seriously. He says my numbers aren't low enough for me to be symptomatic. Fatigue, excess shedding of my hair, any basic exertion makes my heart race.... My RBC, HGB, and HCT seem to stay just under the normal range. My FE is 29, and percentage of saturation is 8. But my Ferritin is 51 which is in the normal range. Does anyone have any suggestions? Do these numbers indicate iron deficiency? My menstrual cycle is very regular, but extremely heavy.

Any advice would be appreciated.

Wed, November 9, 2011 @ 7:33 PM

34. Mary wrote:

Hi Buffy - my story is very similar to yours except my ferritin is 40 (still in the normal range). I've been reading that in order to stop shedding & regrow hair, your ferritin should be at least 70, and some information says it should be 100. I'm in the process of eating more iron-rich foods along with vitamin C - I'm desperate to feel better. I'll even eat liver if it makes things better! I am also going to ask my doctor about supplements.

Thu, November 10, 2011 @ 12:19 PM

35. Buffy wrote:

Mary, thanks for the info. I didn't know that about the ferritin level. I also make a point to eat iron rich foods, cook on cast iron (I read that trace minerals can be absorbed), and I also juice kale and spinach and drink wheat grass daily. I'll draw the line at liver though! I remember having to eat it as a child. Good luck to you.

Thu, November 10, 2011 @ 4:47 PM

36. Jen wrote:

I Have IDA as well as most of you and have recently been refereed to a hemotalagist. My blood work is way out of whack Serum Iron was 2 Ferritin 2.6 and Percent saturation of 7. They told me to change my supplement to Ferrus Gluconate and take it twice a day with vitamin c. I was curious if anyone knew what I should expect at the hemotologist visit as they assess me for Iron infusions and how that process would work. Also they told me I may need my bone marrow tested has anyone had that done?

Fri, December 30, 2011 @ 6:03 PM

37. Cindy wrote:

My anemia adventure started back in August 2011. I was feeling really crappy and was having real bad back pain. Went to the emergency room and found out during a bunch of blood work that I was mildly anemic. Followed up with my GP and after a barrage of more blood test was told it was chronic disease anemia. At this time my iron was normal everything out of wak was around my red blood counts and my protein was low. Its been down hill since, because of getting no true cause answers and getting more frustrated and worse by the day started seeing a hematologist by this time I had paid another visit to the ER this time for low potassium and magnesium and hemo was getting lower. I didn't have the energy to do anything started missing a lot of work I was tested for bleeding from my gastro specialist and I found out my beta carotenes were low. Kept getting worse started seeing the hema in November had an Iron infusion first week of December my ferritin serum jumped up to 470 so now its high but my saturation is still low and my hema came up to almost normal 11.8 but I have been fighting a lot of respiratory issues started with bronchitis and than christmas back at the ER and was diagnosed with pleurisy. Specialist retested my beta and now liver counts and my beta is down to 5 so my immunity is compromised right now. I was told 3 weeks from the infusion I would feel like a new woman. Still waiting for that new woman because she never showed up. My husband and I are very frustrated and need answers but so far nothing on what is causing this. As far as my blood work its always been pretty normal accept for by type II diabetes which its the one thing that is under control now. Imagine that! My mom had mylodisplasia syndrome and I am concerned this is the onslot of it but they have yet to do a bone marrow test and I am not quite sure why not. Never feel like I am asking the right questions.

Wed, January 4, 2012 @ 9:02 PM

38. wrote:

I am a 65 year old women who has been in petty good health until some blood tests revealed I was borderline iron deficient. After repeating the RBC a few months later, it was found I had a very low ferritin level--5--but was not yet anemic. My doctor said this was a precursore to anemia and I should get it checked out with a hematologist. I am looking for causes--I know bleeding somewhere in the body could be a cause but I had a colonoscopy in the last 5 years along with a endoscophy which diagnosed GERD and take an acid inhibitor everyday. It was after taking Omeprazle that my blood levels changed so I was wondering if anyone else had experience with a drug inhbiting acid might interfere with nutrient absorption.

Tue, January 17, 2012 @ 11:41 AM

39. Fayth wrote:

I've been dealing with various levels of ID since I was 12 years old. I have been on ferrous gluconate for years to deal with it. In spring 2011 my iron level was at a four fo my doc put me on FerraMax, easier to absorb, when I went back 2 months later my levels dropped to 2. She referred me to a heatologist and changed my oral iron Proferrin, supposedly the best oral iron there is. I got into a special combination clinic held at the Women's Health Centre here, where I am now seeing a Hematologist and Gynocologist at the same time. The hematologist has put me on Venofer treatment once every two weeks, while the gyn is having me get every type of ultrasound available and has put me on cyclokapron during my period to try to control the bleeding. I have had 4 iron infusions and although my iron and hemaglobin levels are up, my symptoms aren't getting any better. I'm still exhausted and freezing all the time, I keep getting sharp pain in the upper left abdomin, always nauseous, no appetite, headahces, ect. SHouldn't my symptoms be alleviated somewhat by now?

I was diagnosed as borderline hypothyroid about 5 months ago and have been taking synthroid ever since. I was also hospitalized 2 years ago with acute cholesystitis and had to have my gallbladder removed. I was 29, not over weight, low-fat diet and had been experiencing episodes since the age of 12 as well.

Should I be pushing for a different diagnosis? Something is obviously wrong.

Thanks.

Fri, January 20, 2012 @ 1:07 PM

40. Dylmansmom wrote:

I have severe iron deficiency. Almost any activity at all causes my heart to race and I am short of breath all the time!!! I have terrible restless leg syndrome, I have a lot of trouble sleeping, constipation and I am tired and cold ALL the time!!! I was told to take 325 mg of iron twice a day but I am unable to take this. Everytime I take an iron supplement I feel horribly nauseous and usually vomit!!! I just cant take this anymore!!! I have never heard of an iron infusion, maybe I should ask my doctor about this. I have depression issues too, I'm not sure if its from the deficiency or because of it.

Sat, February 4, 2012 @ 5:00 PM

41. Kim wrote:

Dylmansmom- I have the same problems with the iron my doctor prescribed makes me extremely sick and I cannot take it. I learned that when pregnant women cannot keep their prenatal vitamins down the docs will have them take the "Flintstone's Children's Vitamins with Iron". I have been taking them and have been able to raise my ferritin level from 2 to 28 in three months. I am careful not to drink milk, coffee or tea or eat any dairy when I take them as these can bind with the iron and block absorption. I also take 3 vitamins at a time and make sure to take with a meal high in iron. I haven't gotten sick to my stomach at all since I started doing this and so far it is working. At least these are better than nothing. Hope this helps!

Mon, February 6, 2012 @ 6:12 AM

42. Lisa wrote:

Have any of you had stool samples done to eliminate a bleed in your bowel.
That's my problem...I am losing more iron via a bleed than I am taking in,
About to have another colonoscopy.

Wed, February 8, 2012 @ 5:27 AM

43. sam wrote:

Ive has several test done to find out why my hemaglobin is always so low i stay at a 7 even tho im getting iorn therapy every month. Im always super tired and never feel good at all and just dont know what to do anymore. What can be causing my rbc to always stay so low my dr is good but he hasent given me an answer on whats wrong with im looking for some answers please help

Wed, February 15, 2012 @ 12:59 AM

44. Anette wrote:

To ALL that experience low iron levels;

Have any of you tried eliminating GLUTEN? You must understand that when you are gluten intolerant, your stomach lining becomes so damaged that vital nutrients such as IRON can not be digested, and your brain literally starves for what it needs to function appropriately. Gluten intolerance is a MAJOR cause of unexplained anemia, thyroid issues, autoimmune responses, fatigue, psychological issues, and much more. Gluten is a major cause of AUTOIMMUNE DISEASES so you must heal your gut first by eliminating gluten from your diet and you will see huge improvements in autoimmune issues, energy levels, and most importantly; anxiety and depression. It's so easy to do and you'll know within 2-3 weeks if you are someone who would benefit from this. Also, you have to understand that gluten intolerance is not detected on a blood screen so western doctors don't know to recommend this. MOST naturopaths are all about this, and after 10 years or feelings extremely anxious and "off" I finally feel WELL thanks to going gluten free.

The crazy thing is that if you're gluten intolerant, each time you ingest gluten you are causing your system to go into stress, inflammation, and overdrive. Imagine how happy your body will be once you take away this toxin. Look into yourself, google gluten intolerance and learn more about it for yourself.

I urge you all to try this. It can't hurt you and it may be the best thing you've EVER done for your health!

Best of luck to you all!
Anette

Sat, February 18, 2012 @ 12:37 AM

45. Susan wrote:

I totally agree with Anette regarding the gluten. Long story short, I went off of gluten twice, once 2 years ago for a short time, only be told by the drs. to go back on, no reason, not to eat it. Fast forward to last October, diagnosed with horrible anemia. Ferritin at a whopping 3. Took myself off of gluten and my tummy has never felt better. The Drs are still telling me that that is not the issue, but to bad, I am actually feeling human again. Now, just finished up my third iron infusion and waiting to see if it worked.

Good luck to everyone!
~Susan

Thu, February 23, 2012 @ 6:50 AM

46. Michelle wrote:

I have recently been diagnosed with iron deficiency anemia. I was wondering if anyone had any advice about what the best/strongest brand of iron suppliment was? I am tired of feeling tired! Want to get started on something effective as soon as possible. My diet is almost totally non dairy, a do green smoothies and juicing. Lots of beans/nuts and some meat...so, I think I'm doing all I can in this department. Thanks for any advice.
Michelle

Fri, February 24, 2012 @ 12:52 PM

47. andrea wrote:

Help! I've read everyone's postings and can relate to most. I am 44 female, w/Ferratin 7.8, RBC 3.98, Hemoblobin 11.4, and HCT 34.4. I realize these are a lot of numbers, even I can't figure it all out! I've had one doctor tell me Ferritin @ 7.8 was reason for iron/blood transfusion. My Internist just keeps blowing me off. Even ER dept. sends me home. I've been Rx'd 50,000 unit vit. D, 325 mg iron 3 x's day (but I usually vomit), and am nauseaus, migraines EVERY DAY. Restless Leg, freezing, depressed, irritable, and I miss having a life. My children and husband have "lost" their mother and spouse. I am so dependent on my husband, I feel like an infant.

Any advice? I'm so grateful...............

Sun, February 26, 2012 @ 5:15 PM

48. Miskin wrote:

Intersting reading all your comments.
I was in hospital yesterday having an iron infusion all day. 6 hours in all after the inicial tester that they do. I had one in Novemwber but unfortunately all the iron i had has dissapeared again. I was diagnosed with water mellon stomach and am waiting to see a consultant to see if this is the cause of the loss of iron. I do not have periods as early menopause so it's not that.been tested for coeliac as runs in the family but was negative. other than that i do have a rare blood disease but my heamotologist says the tummy is the problem, when i had an endoscopy the consultant then said i will need laser surgery/ Problem is i am still iron deficient and feeling like all you other people on this site, feeling done in and fed up.....

Tue, February 28, 2012 @ 1:08 PM

49. shell wrote:

Hi there I have a low b12 and low iron I have jabs of b12 and put on iron tables 3 times aday 325mg I've been taking these every day yet feel nobetter went bk to the doctors had yet other blood test done and I just been told that my iron is still droping so now don't no what to do I feel awful all the time just wanna sleep and I really have to push myself to do anything I get upset tummys and feel sick my head never feels as if it belongs to me . I think I'm 33 yrs old I shudnt be like this I've also dorped from a size 12 to a size 8 .

Thu, March 1, 2012 @ 9:33 AM

50. Miskin wrote:

You need to keep bugging your doctor to get sorted. Sounds like you need an infusion to have a full load of iron all at once......after a few days you will feel alot better. Ive just had infusion and three days on i feel much better. Before like you my head didnt feel like it belonged to me. go to the dctors again!!!

Thu, March 1, 2012 @ 1:58 PM

51. Miskin wrote:

Sun, March 4, 2012 @ 6:03 AM

52. Erin wrote:

For the past few years, I've experienced being really cold, very tired and fatigue and I would chew ice like nothing. I finally was diagnosed with really low iron, it got as low as 1.5 and the Dr. was wondering why I wasn't in the hospital, but I think because my body did it so gradually that it just got used to it, plus I have children and you have to go on about your day. They gave me an iron infusion and it came up a little but then it would drop again over the course of 3 to 4 months. Now I just got back from the Dr. and I have to have another iron infusion, this is the fourth time, and I don't want to continue having these, plus I feel that their just covering up the problem not finding out why my body is not holding on to the iron.They have sent me to my Gyno to check out my periods and they also sent me to have a colonoscopy and that came out fine, but why does my ferritin keep dropping so low but my hemoglobin doesn't. That doesn't make any sence.

Mon, March 5, 2012 @ 4:34 PM

53. Mark Spencer wrote:

My wife has been anemic it seems all her life. Recently she found a Dr. who understood her condition. He did the test and her iron level a 2. he said he did not know how she was able to get up each day.She eats ice constantly and when she doesn't have ice she chews her hair. He started giving her iron transfusions and they really worked. But,soon after that I lost my job and insurance and she can no longer receive the infusions. She has now gotten worse than before.She can barely walk a few steps before she is exhausted. Her heart is skipping beats. She is chewing ice again. She can not see a Dr. because we have no insurance and even if she could there is no insurance to cover the cost of treatment. I am very worried about her as I watch her get progressively worse. Are there any supplements out ther that will help her. Iron supplements make her incredibly sick. So does infusion,but,she tolerates it. If anyone has any advise it would be greatly appreciated. I am very worried about the results if I can't help her.

Wed, March 7, 2012 @ 5:25 PM

54. Marie wrote:

My daughter was recently diagnosed with Celiac and her ferritin level was 4. She is on a gluten free diet. Her doctor does not want her taking any supplements at this point. Does anyone know how long it takes before she will see improvements in the ferritin level?

Sat, March 10, 2012 @ 2:55 PM

55. Debbie wrote:

I am anemic and have had 7 iron infusions. My iron level is still @ 9 with an iron saturation of 1%. Not sure what to do next.

Sun, March 11, 2012 @ 2:27 PM

56. Erica wrote:

I haven't had serious medical issues ever. I'm anemic and have in the past taken B 12 shots but haven't taken iron or B 12 shots in quite some time. Yesterday evening while stopping to pick up a food order, I was cramping a little cause my cycle will be starting soon. I hadn't eaten since twelve that day and it was about 5:15. I went in, asked where the restroom was and the next thing I knew I was on the floor and someone was asking me if I was ok. Paramedics came and they said my blood pressure was 90/6 or something like that. Sugar level was 78 which they said was good. I asked them to take pressure again because it was low at the dentist once and when they did it again it was normal. The paramedics did pressure again and it was 110/68. Could this have been because of low iron?

Thu, March 15, 2012 @ 8:49 AM

57. Dawn wrote:

hi,
for all of us that are unwell and low in iron, i know that if we cooked everything in a cast iron pot/pan that would help and also the dessicated liver you can buy is supposed to be good. I really feel for the gent who's wife needs the infusions and no insurance, do try liver and iron pots. go back to the olden days :)
A lot of my symptoms are due to my thyroid supplements not being used properly in light of my deficiencies. Low ferritin\iron and some other nutrients stops proper thyroid hormone metabolism which equals feeling rubbish.
Then of course on top of that the anemia symptoms and low zinc and ,roteins aghhh I feel terrilble, i am bedbound with fatigue, breathlesness and pain, and even typing this is hurting my arm muscles. So weak.
Blood tests showed liver enzymes so i am a tad worried.
Please get better everyone. Would try the iron pots thing myself but i cannot cook for myself.

From the lady with the racing heart and legs but isn't really moving far`lol.
hugz Dawnx

Mon, March 19, 2012 @ 4:58 AM

58. Tootired wrote:

I have just found your website at 3:00am. I am up again with an upset stomach, insomnia and out of breath. I have had a history of very low ferritin. 2-3. My doctor only pays attention to me when i become anemic. Today's labs reveal I am anemic,really low ferritin 2 , b12, and thyroid numbers moving from hypo to hyper. I am exhausted all the time.
I paid $30.00 for a b12 short and was told i couldn't see a doctor without an appointment. I gave the nurse my symptoms, the doctor told her to tell me to go to the ER if I felt that bad! She wouldn't even speak to me personally.

I had 2 iron infusions in about 1.5 years ago and they worked pretty well. My underlying concern is why the ferritin is so low, and why we have no doctors to tell us what this is a symptom of. Everyone is saying the same thing.

I am also a regular blood donor. Is this a bad idea?

Wed, March 21, 2012 @ 3:20 AM

59. Jakmac wrote:

Hello,
I am 50 years old - Female. My ferritin is 6. Saturation 1%. Hemoglobin normal. (I think he said 130?)
I had gallstones/gallbladder removed at age 18. Dx with Hashimotos at age 25. Have always had symptoms of fatigue. I have been taking B12 shots for 25 years.
I had a hemorrhage after the birth of one of my children (so I am wondering about iron avidity)
Exercise often gives me symptoms of arthritis - but those tests are normal as well.
Last five years have had Roseacea on face.. it actually looks like a lupus rash but the one test I did for lupus came back normal. I've gained 50lbs in the last five years.

What works for me: Magnesium supplements have greatly helped me over the years - I have to take 500mg at night otherwise don't sleep well. Vitamin C usually makes my face go red.
I have recently started taking HCL Betaine supplements with my iron to address absorption problems (WHAT A HUGE DIFFERENCE IN NAUSEA AND NO CONSTIPATION PROBLEMS)
Here is my question:
When ever I start taking iron supplements - I get intense aching in my hips and shoulders after a few weeks. Although I have better energy and less shortness of breath (I have problems walking up stairs or any hills) but I can usually walk on flat surfaces. I am worried that I am getting iron overload - although that doesn't make sense. My fear is that the problem is with the ferritin but not with iron in my body. Does anyone have any information on this?
Jakmac.

Fri, March 23, 2012 @ 9:27 AM

60. Jakmac wrote:

post script about the supplements: I also take 5mg of folic acid fairly regularly. For those people with insurance problems. I buy B12 over the counter - for about $8 - and this has about 10-12 doses in it.. and I give myself the shots in my thigh at home. Not a big deal and much easier than having to make monthly appointments with doctors and nurses.

Fri, March 23, 2012 @ 9:31 AM

61. sickallthetime wrote:

After seeing all of these horrible symptoms, and having them for two years, and having had doctors tell me I was making it up, and try to send me to a mental institution....

..even when they finally ran the tests and, by modern guidelines, my numbers are off, and they refuse to update their practices..

..having had my doctors tell me to ignore my swollen hands, or that maybe it's because I am fat (I gained 50 lbs BECAUSE of being sick. I used to be a highly active 135 pound woman with tons of energy, now I'm fat because I can't stand)..

..my best advice is to realise that you're never going to find a good doctor unless you're royalty or a celebrity, and jump off a bridge. I wish I had done so, when I could still walk well enough to get out to one.

Sun, March 25, 2012 @ 3:55 PM

62. Doodlesquat wrote:

Oh, yeah--I got all the same stuff. Over the past year, I have had 14 iron infusions. Been checked for Crohn's disease, celiac disease, had upper GI series twice as well as two colonoscopies and 2 fecal occult X3 tests. You name it, they tested it, probably twice and ruled it out. I DO have RLS and have had it for 30 years and I DO have migraines also and have had since childhood.

Questions to ask you guys:
Have you noticed the RLS gets much worse as you get more anemic?
Notice breakthrough symptoms during the day and maybe the symptoms become abdominal?
And the migraines increase?

Here's a couple of facts you might be interested in:
* about 25 % of long time sufferers of RLS become iron deficient anemic.
*Several independent research studies point to a genetic cause for RLS and its link to both migraines and the need for iron in the brain.

Thu, March 29, 2012 @ 12:27 AM

63. Farzana wrote:

Hii... i am 5 months pregnant and asked to take iron supplements.. but the problem is wenever i take iron tablets i get violently sick.. infact my body becomes extremely weak.. i start having loose motions too.. n the whole day i have a very heaavy feeling in my stomache... n hence i do not eat anything... please help.. is it ok if i dont tak the iron supplements??

Thu, March 29, 2012 @ 3:51 AM

64. Jakmac wrote:

To Farzana. Many people are able to tolerate a liquid formula called "Floradix' that you buy in health food stores and this is usually just fine for helping keep up your iron stores in pregnancy. However, if you are very anemic and that is why you are being asked to take iron supplements, that may affect your baby and your pregnancy, not to mention you will feel extra tired so you should keep working with your doctor/midwife!

Thu, March 29, 2012 @ 8:22 AM

65. Mamzie wrote:

Could someone please tell me what kind of iron tabs to buy when the dr. tells you to take 325 mgs of Ferrus Sulfate. I had been taking Integra F once a day which did not bring up my Ferrin rate ( at four currently) I am still anemic and my white and blood cell count has halved in two since the needed blood trasfussion back in Sept. All tests have been neg. for bleeding out ect. Thanks Female 53 who is sick of being sick and tired

Thu, March 29, 2012 @ 2:52 PM

66. hopethishelps wrote:

Just a few thoughts.....Low Ferritin that is me..until I went to a blood disorder doc.:
hematologist, that is when I received Iron transfusions..definately a boost to mood, energy.. be persistent, don't give up ..advocating for yourself to feel better.
to the posts who have taken iron rich foods and supplements: but iron level does not improve:
have doc./NP Nurse Practioner check an H-PYLORI test, this is a blood and breath test. if you are + then you will be put on antibiotics. +h-pylori will cause stomach ulcers and inflammation and prevent iron absorption in the gut. (it as thought that ulcers were once caused by stress but it is from a bacteria in gut)!
To the posts who need a good source of Iron over the counter' BIFERA seems to be a good choice,: Keep tryin sister soldiers' and the men who support us!

Sat, March 31, 2012 @ 10:58 PM

67. Nina Gallo wrote:

Hi;
I hope someone can give me some insight. I recently had a heart attack (1mo ago).
I'm now taking Plavix & Aspirin 325, both daily. My recent labs show the following:
RBC...2.75 (low), Hemaglobin 8.6 (low) & Hematocrit 25.9 (low). The odd thing is that my total iron level is 214 (high) & Platelets 359 (wnl). While I feel cold & somewhat tired, thats nothing new & tolerable. I have been somewhat depressed, but that's expected after a cardiac event, I would think. Do you think it's a GI bleed? I'm not experiencing any abdominal pain and my stools look normal. Thanks

Mon, April 2, 2012 @ 4:42 PM

68. hopethishelps wrote:

Nina: why do you take high dose aspirin?... did doc recommend??

this maybe cause of internal bleeding?? i wud recommend GI doc to evaluate.

Wed, April 4, 2012 @ 11:12 AM

69. Emily wrote:

Hi,
I am 17 years old and I know very well that I have anemia through the news of my school nurse. My school nurse had given me a blood test and they had tested it at a nearby health clinic. I got the results back about two months ago which is how I found out. I was prescribed iron supplements (Ferrous Sulfate pills 67mg= a day's worth of iron for a normal person) and have been using them every day for the past two months along with a cup of orange juice.
I signed up for a bi-annual blood drive that has been held at my school hoping that my iron levels were normal. However I was wrong. During that time, the doctors (phlebotomists??) had to check my blood pressure, iron levels, and blood sugar. They used the automated blood pressure machine 7 times on me until they did it manually (weird, huh?). After that they checked my iron and blood levels, and it wasn't until then that the doctor had told me that all three tests showed that I have low but normal blood pressure, low iron, and low blood sugar. Then they had to deter me from being a possible blood donor until I am better.
But that is crazy since I enjoy having some form of glucose (such as chocolate!) every day and have been taking iron supplements since my last checkup.
I told my physiology teacher this but it kind of freaked me out when she said that she heard of a story similar to mines where a friend of hers had the same problem as me, as the friend had it as a result of a stomach ulcer. Now I'm really scared and I don't know who to go to besides a doctor (but I am a slave to the evil medical insurance corporations that frequently changes policies that screw honest people over, so I cannot go). :/
What is going on with me?

Fri, April 6, 2012 @ 4:35 PM

70. Kristen wrote:

I saw a sleep specialist last week because I have been sleeping terribly and am exhausted constantly. I'm foggy at work and it's really starting to impede my performance, which is bad since I recently started a new job. I don't want to lose it over this! My doctor talked to me about my symptoms which, aside from terrible sleep include achy legs that "fall asleep" constantly when I'm sitting still, and an inability to get comfortable. Surprise, surprise, it's RLS. My ferritin was 25 and the doc said it should be over 60 to be normal for me. So, I am going to be scheduling IV infusions (I've struggled with anemia before and I know I can't stomach iron pills). He said I should feel some relieve almost instantly. Is that true? How long does it take to start feeling and sleeping better??

Mon, April 9, 2012 @ 2:27 PM

71. H.B. wrote:

I'm in the same boat as most of you above in regards to the iron and gluten etc. When you've had an iron shot, is it normal to have swelling (like a hard bump about 2 inches) in the location of the shot? I'm assuming yes, but wanted to see...
My B12 shot, no swelling.
Thanks~

Wed, April 11, 2012 @ 12:45 AM

72. Ruth Dorn wrote:

64 yr old have so many surgeries feel frustrated that I feel so bad all the time knee replaced two hips major back surgery pulmonary valve replaced Now I can't walk 25 feet without getting out of breath went to ER blood count so low could have been fatal got 5 or 6 blood transfusions spent almost 3 wks in hospital had colonscopy and upper GI done no bleeding finally said I OD on coumadin was pure hell tied to IV S and heart monitors sent me home did well for 2 wks then gradually went back to the pain in stomache and shortness of breath Just had bloodwork done and everything fine but blood count low again doctor dumbfounded said will consult with a specialist and told me to take iron 325 mg found this site and getting excited hoping found a cure also everytime I had surgery had kidney problems wondering about erythropoitin factor any thoughts? I just have been in this pain all the time and couldn't describe what I felt Hope this is my answer

Thu, April 12, 2012 @ 6:41 PM

73. kraut wrote:

I was very tired all the time until my doctor did blood work for vitimin D and I was quite low. So now I take 4000 iu per day and feel fine. Your can also replace vitimin D by being in the sun. It's the sun shine vitimin.

Thu, April 12, 2012 @ 8:16 PM

74. mommapearl wrote:

I had gastric bypass surgery last June and my iron is dropping every time I go to my follow up. I am taking 2 chewable iron pills a day and 2 ferra sumate iron pills a day. It seems like the more iron I take the more it drops. They said I am ALMOST a candidate for the infusion. Any suggestions?

Tue, April 17, 2012 @ 11:49 AM

75. Tina wrote:

I feel like I cannot even get up without getting so out of breath. Last check my iron level was 20 and hemoglobin 9.6 back in February. I at least could get up and move around before a little bit. I have very very heavy periods which could be the cause. They say I have a Polyp and they say will remove that but want me to gain weight. This all started back in august when I was short of breath so I ended up in ER to find out Potassium was very low had to get 4 bags. I am wondering is my potassium really low again or because I am anemic now is that why I can not even move. I am wondering if I need blood transfusion and some iron injections ? Has anyone been so short of breath and needed transfusions or iron injections right away for it ? I am also afraid of that too.

Mon, April 23, 2012 @ 9:40 AM

76. Julia wrote:

Hi, my name is Julia.
Please ! Is there anybody who can help, I have low iron for over 25 years and don't know what to do because the body doesn't absorb the iron. I take iron pills and eat foods rich in iron but very little is absorbed. What can be done to improve this condition? Thank you.

Mon, April 23, 2012 @ 5:46 PM

77. Renika wrote:

I was at school and on my way to class i started feeling weak & tired in my body. As i sat in my next class preparing to write i was shaking while writing and i went to see my school nurse. I mentioned to her i had low iron & that my cycle was on, she checked my blood pressure it was normal but i still believe that i'm anemic. What do i do?

Thu, April 26, 2012 @ 5:42 AM

78. Emily wrote:

Hi,

I have hypothyroidism, and low iron is a symptom and sometimes a cause of this. This site has been extremely helpful to me and my mom who suffers from the same thing. http://www.stopthethyroidmadness.com/ferritin/

Maybe some of you have hypothyroidism, or adrenal fatigue. I take 30mg of Natural Desiccated Thyroid Hormone every morning and it has changed my life. Read the symptoms on the site I mentioned to see if you have it. http://www.stopthethyroidmadness.com/long-and-pathetic/

Best of luck!

Thu, April 26, 2012 @ 9:56 AM

79. Gina Torres wrote:

I start my 1st iron infusion this thursday. Do I have anything to worry about? Symptoms? Can I return to work the next day?

Sat, April 28, 2012 @ 6:52 PM

80. candie wrote:

Hey everyone. I have been trying to do some research to see if I should consult a hematologist. I was having SEVERE symptoms: dizziness, fatigue, exhaustion, confusion, lack of ability to focus, lack of awarenss of times, bad memory, overall fuzzy vision ect. Had my levels done at the begging of this month.

Iron total 11 out of 40-175 mcg/dl
Transferrin saturation 3 out of 15-50%
Ferritin 3 out of 10-154 ng/ml

Hemoglobin 10.0 out of 11.7-15.5 g/dl
Vit D 25-oh total 4 out of 30-100 ng/ml
Vit B12 serum 232 out of 200-1100 PG/ml

My doc put me on 325mg of iron 3xday with vitamin c and prescription strength vitamin d once a week for 3 months.

She also ordered tests to see if I'm bleeding internally. After 3 weeks I do admit to feeling an improvement but I am starting to feel the exhaustion return.

I'm concerned as to whether I should see a hematologist and at what point a blood transfusion is needed.

I can not go back to how I was feeling and I'm worried that that is the direction I am heading.

Any advice would be appreciated.
Thanks.

Sun, April 29, 2012 @ 4:13 PM

81. Gary wrote:

I have been feeling tired fatigued dizzy weak etc. I discovered I had blood in my stool so had a colonoscopy done and found out that i had a bleeding polyp. Who knows how long it had been bleeding for. My iron levels were all within the normal range but at the very low end, with the exception of my FE which was mid range. My saturation was 15%. I just started iron supplements. I want to encourage everyone to get colon screened if not by a simple blood stool test or a colonoscopy if you are near 50.

Mon, April 30, 2012 @ 2:49 PM

82. Missy wrote:

I used to feel like the odd woman out, until I read all of your entries. I am GIAD (GastroIntestinal Absorbtion Disfunction)- meaning I don't absorb iron from any oral source (e.g. food, oral iron supplements). I also have consistent small intestinal bleeds. I strive to reduce loss of blood any way I can. I have had an ablation to slow menstral bleeding down and I am on prilosec (acid reducer and ulcer healer) meds for the rest of my life along with other intestinal health supplements to optimize healthy digestive tract. I had a hematologist that helped me after the original discovery and diagnosis, who has since retired. When my iron panel levels drop I get Iron IV for 6 weeks and I get back to feeling like a vibrant me. I have a high base line Hemaglobin 14.9. When my Sat rate gets in the teens and my ferritin gets in the low 30"s, I get all the symptoms of anemia (fatigue, palpations, temperature swings, short of breath, leg cramps and restlessness, dizziness). My new hematologist says- "your HGB is still normal range so you are fine. I can hardly sit at my desk and stay awake and I am fine? I am so frustrated. I have to wait until I bleed out and my levels drop to threatening levels in order for my insurance to pay for the Iron infusion. I am so frustrated with the ignorance in the medical field about iron levels. So we all have to wait until we pass out or bleed out to qualify for treatment. If any of you are GIAD, I would be most grateful to hear words of encouragement and Ideas of how to feel better with all the "standard of care" red tape.

Thu, May 3, 2012 @ 1:25 PM

83. Gina Torres wrote:

My Hemotologist told me my iron is in the single digits (what does this mean?) and I will be getting iron infusion weekly for 4-6 weks. I felt like something was wrong with me because I am always tired I look forward to taking naps. I am hoping this is one of the symptoms because I am tired of being tired. Can someone please tell me what to expect after the infusion and is being extremely tired part of the symptoms? My story I had Gastric Bypass and recently had it reversed. Gina

Fri, May 4, 2012 @ 8:01 AM

84. Naomi wrote:

I really just wanted to say I am so glad I found this site. Though my ferritin and hb levels remain low and my symptoms continue, to know I am not alone in suffering with this is a real comfort.
I have been anemic for nearly 2 years and had a lot of misdiagnosis along the way, I have been treated with blood transfusions as I also have a blood disorder but am about to have my first iron infusion and I am really hoping it helps. I have had to be persistent with my doctors and they have acted only because of research I have done a lot of the time!
I suffer with a lot of the symptoms listed above, particularly fatigue and dizziness but it was only when my hair started breaking off (something people could physically see) that I started to get listened too.
Here's hoping that this next treatment works, if not I will keep pushing and won't give up! Good luck to you all. X

Sat, May 5, 2012 @ 5:52 PM

85. t.w. wrote:

Hi. Ive had rls for years and finally saw a sleep specialist who said my ferretin was 12 and said that alone could cause rls. The thing I'm concerned about is he gave me iron supplements 3 times a day but as I gradually increase my dose to that amount a day, it gives me increasing joint and muscle pain. The pain dissipates and then starts up after I take another dose. Does anyone know why it's causing me pain? It otherwise seems to help with my rls and fatigue and strangely enough has helped my depression......

If anyone has any input about the joint and muscle pain after taking iron supplementation please let me know. Thank you.

Sun, May 6, 2012 @ 1:49 PM

86. Emma Mayers, Dallas wrote:

i have a doctor’s appointment in two days. i wonder what’ll happen.

my hgb level is extremely low, even lower than it was the last time i had a blood analysis. i know the doctor’ll want to put me on iron pills but they make me constipated so she can take them herself if she really wants to. i’m not about to feel like shit for the next few years (and i will have to take them for at least a few years because my brother has the same problem and he’s been taking them for at least a year now - he, however, does not have any problems with constipation, which i did when i tried to take them).

also, i’m pretty sure putting me on both iron pills as well as something with a laxative effect (be it actual laxatives or something with the effect) will fuck me up even more. iron pills are already harmful for the liver (ha, the irony).

maybe i’m just way too picky. i don’t eat liver, i don’t eat beetroot, i eat too little red meat as i would like to not eat it at all, i.do.not.like.taking.pills. i would eat spinach if my parents would buy it.

and even though she probably will not say a thing about this because doctors seem to be blind when it comes to illnesses that have started due to mental problems, then if she does ask me if there’s any other reason behind my deficiency (other than genes, as i was already born with low hgb), i fucking hope she won’t tell my mother (who, i think, has a doctor’s appointment right after me - not sure why, though). she can’t, right? i’m an adult, no matter how much i’d like to deny that.

Mon, May 7, 2012 @ 5:18 PM

87. Donna wrote:

Ferritin is 7.5
Hemocrit 35.4
Platelets 354

Does that make any sense at all?

Tue, May 8, 2012 @ 5:10 PM

88. Missy wrote:

Donna- your HGB is probably within a normal range too right now, but with ferritin that low you are becoming fast iron deficient. Think of HGB HCT and Platelets as the Roof. The Frame and support beams of your blood level house are the Iron, Ferritan, Saturation rate, TIBC. As your iron warehouses empty (for whatever reason that is) your Sat, Iron, Ferritan numbers will drop and your TIBC will go up. Then your roof numbers will start to drop. (HGB, HCT, Platelet count, Red Blood cell size). That is why you can feel like crap, but still have "normal range" roof numbers.

Fri, May 11, 2012 @ 7:31 AM

89. Missy wrote:

Naomi, I, like you, felt really alone until I read all of these comments. I have also done a lot of research and have found that I have to push to get doctors to understand that "Normal Range" - is statistical. We, the small percentage out here are outside the statistical range. We get "grouped" or misdiagnosed. My FAVORITE in the the beginning was an old heart doctor that was looking at my good heart tests after I started having lots of palpitations due to anemia. He said to me that Women in their forties often have heart flopping because of stress in their heads, and that if I could just stop "creating" worries in my head then my heart would stop flopping. I sat there in disbelief....was this 1960? Needless to say, I stated politely but firmly that he needed to either retire or get back into med school and I left. Later I found out from a REAL doctor that anemia causes your heart to flop around in your chest like a fish out of water. How hard was that??? We all just have to keep pushing our doctors to step out of their normal comfort zones of "Standard" and make them look at the whole picture. We all know our numbers and bodies and symptoms better than anyone else. Also remember that doctors are not gods. They are human. They have bad days and good days like the rest of us. Don't put them on a pedestal and don't agree with everything without asking questions and doing your own due diligence. In the end, it is your energy and your life that is sacrificed and you cannot share yourself with your family if you don't have the energy to keep your body running right.

Fri, May 11, 2012 @ 7:55 AM

90. Gary wrote:

I had low iron serum (53 mcg, range 45-160) and low saturation % (15, range 11-70). Had a bleeding polyp that was removed a few weeks ago. Red blood cells low at 4.12 range 4.15-5.75. Ive had the dizziness weakness (esp in my legs), tinlging in my hands and feet, vision issues, especially at night. Ive also had some wierd muscle/bone pain in arms and hips. Has anyone else had wierd pains with anemia? Thanks!

Mon, May 14, 2012 @ 10:14 AM

91. Gary wrote:

adding to above post, my ferritin was normal at 152ng (range 22-322), but I read somehwere that ferritin is not a good level to look at for anemia. I also have a reverse T3 problem that could explain the normal ferritin. Tx

Mon, May 14, 2012 @ 10:17 AM

92. Gary wrote:

Also, has anyone ahd any gastro issues with low iron anemia? I had a bad gallbladder removed 6 months ago. Tx

Mon, May 14, 2012 @ 10:37 AM

93. Beth wrote:

Just curious on what people who understand these results would say....my recent test results were: IronBinding Capacity: 558 (250-450 ug/dL normal; Iron, Total 26 L (35-155 ug/dL normal); Transferrin Saturation 5L (15-55% normal); Unbound IBC 532 (150-375 ug/dL normal) and Ferritin, Serum 5L (13-150 ng/mL normal). So it appears there is iron in my body but not being absorbed??? What do I do and what kind of doctor could help me?

Mon, May 14, 2012 @ 11:32 AM

94. Gary wrote:

In my opinion you need iron supplement and to figure out why your iron is low. I would go to your GP or a hematologist asap. Those are some low numbers.

Mon, May 14, 2012 @ 12:36 PM

95. Kathy D wrote:

Hi all,
I've read the majority of the comments, and i sound like so many of you.
Frustration has overcome my body, which is most likely causing me to be very anxious. As many of you, I've been in and out of many doctors offices seeking resolution. I too have gone from digestive problems to low iron saturation. Most recently diagnosed with a rare condition, Erythromelalgia (EM) Which is condtion where the feet burn, and become very red, gets worse in the heat. I do not think that this is the main source of my condition, this may be secondary. My face is very pale in color, my tongue is red, and hurts, fatigued the majority of the time. My last blood tests, determined that my iron saturation was on the low side. I've asked to be referred to a hematologist, but doctors will not refer me. I'm seeing a acupuncturist at this time, and that'sgoing well. She looked at my tongue and said that my vitimins are not being absorbed as needed, and I was most likely in iron. I'm taking additional supplements that are natural. I will keep in touch and let you know the outcome....hope to feel better soon, Kathy ps. in addtion I'm looking into D-Ribose.

Sat, May 19, 2012 @ 1:16 PM

96. Kathy D wrote:

most likely low in iron (correction in above comment)

Sat, May 19, 2012 @ 1:18 PM

97. Gina Torres wrote:

So far I have had 2 iron infusions. I do not feel any different. So I am not sure if it is working. Maybe the 1st couple of days I feel ok, but I feel I am still tired.

Sun, May 20, 2012 @ 11:39 AM

98. hopethishelps wrote:

Just wanted to get an idea if any of you are able to work?

Most of us are women.....with family, house, pets to take care of, and need to work..

Are you able to work? If so how has it affected your ability to work?

Wed, May 23, 2012 @ 12:22 PM

99. cindy wrote:

I recently wanted to donate blood, but i was told tha my blood leve is fery low that i cant donate. so i have been adviced to take Iron supplement tablest, how is it going to increae my blood level??

Fri, May 25, 2012 @ 4:58 AM

100. Gary wrote:

After a few weeks on iron my rcb, hgb and hct have come up:

rcb from 4.12 to 4.79
hgb from 12.8 to 14.2
hct from 40.3 to 46.6

Having my iron levels tested next week and am stopping iron supps today. I also started on Testosterone supplement and I think that can incerase these numbers.

Fri, May 25, 2012 @ 10:45 AM

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