I have been reading so many threads here and learned a lot from you all but also wanted to post just to get into the conversation.
I was dx'd anemic when I was pregnant in 2007 (they thought it was thalassemia (sp?) initially because of low hemoglobin.) I took iron as much as I could (constipation, anyone?) but didn't keep up with it. Fast forward to jan 2010 and my ferritin is at 5.
Iron supps again, and so on. I get up to 8, 9, 10 you know how it goes. Last one was some months back and 12.6 (I gotta double check with the doc that he gave me the number for ferritin as I know he also looked at my hemoglobin).
Just did another iron test on Friday and get the results tomorrow.
I'm not even sure what symptoms I have because I have them so often. (brain fog, confusion, hair issues, lacking energy are some of my minor ones, plus anxiety/panic attacks and dry eye syndrome, restless leg and so on.)
The symptoms that REALLY BOTHER ME are:
getting breathless doing little things like picking stuff up off the floor or going up stairs
Heart pounding on little exertion
Discomfort/tight feeling in chest when I exert myself and get out of breath (this doesn't last long, just a few seconds until I get enough air.)
burning or aching muscles when showering, brushing hair, getting dressed etc.
I am a cardio phobe and regularly see a cardiologist so I have had lots of heart tests over the past 4 years: countless EKG's, a few echos, some Holters, couple of cardiac memos for my extrasystoles, 4 stress tests in the past 2 years (last one was 9 weeks ago and was 40 seconds BETTER than the previous one). I bug my cardio doctor a lot because I have generalized anxiety disorder plus health anxiety focused on my heart.
I also tend to hyperventilate and feel like I'm being choked/smothered and I take xanax regularly. I went on Zoloft for a year which helped with my chest pains (from GERD mostly -- did I mention my stomach is a mess? I have had an EGD and showed mild hiatial hernia and stomach and eso were all red and sore. Have taken PPI's a lot in the past -- could that be cause for anemia?). Had to stop Zoloft because it made me want to eat everything and I gained 35 lbs.
I have been having my heart poundy/chest tightey/muscle achy/breathless stuff for the past few days. I am coming off the flu and in the past 2 weeks I hardly ate anything and lost 10 lbs (probably why I am feeling anemic now as I wasn't this bad before.)
I'm looking into Ferra Max -- anyone heard of it? Also is it possible to raise iron through stuff besides meat -- like kale, spinach, molasses etc.? I am supplementing now but my cardio guy was saying that 12.6 was borderline normal and while he told me initially last year to take 325 mgs of ferrous sulfate 3x a day for 3 months, he knows I am crap at taking it and now says that I can take it a couple of times a week. I will see what he says tomorrow, but my SIL has anemia and her doc wants her up to 50. (I hope and dream about 50, it's sooo far away.) We're just fighting to get to 15 over here.
I don't have pica I don't think but I have had weird urges to eat things that are not edible. I don't actually do it and I don't eat ice though I have always enjoyed chewing on crushed ice -- i just don't go out of my way to do it.
I do have insomnia, grind my teeth constantly, pick at my hair and scalp all day, and have all kinds of aches and pains.
Hope to chat with you all more. I don't even know if what I feel is a symptom because I've become so used to it all.
Finally, I am female and don't really get chronically heavy periods but I have had ones where it was worse than usual and the last one I had lasted an extra day than normal. I also had some mid cycle spotting a couple of times and here comes some TMI -- I have an internal hemorrhoid that DOES bleed when I strain/get constipated. I had a sigmoidoscopy back around 2003 or 2004 which found that. And IBS. So no scopes since the EGD maybe 4 years ago. Not sure where my anemia comes from exactly but my mom has always had it since her teens as well. Does it run in families? Maybe I just don't absorb iron well?
I hope I don't miss anything! First of all welcome. I always tell people sorry to have met you like this. Which I truly am. After reading your post I think I have found another one of my long lost twins (I have a few here). I too am a little hypo as far as my health goes but I want to add I wasn't like this before the anemia. One day I was sitting at my computer desk and just had this rush of "omg I feel funny" my heart began pounding out of my chest, I was dizzy, couldn't catch my breath, panic attack ensue. Fast forward to me blacking out and saying goodbye to the world. I thought I was dying.
All of your symptoms (when I say all I literally mean all and then some) I have had. At first the chest pain, more like I had an elephant sitting on me smothering me, was the worst for me. Then the dizzy came. Honestly looking at it, no wonder we have anxiety and panic as well as depression. So I did a lot of homework over time, since my diagnosis, I'm rolling up on a year. The best terms I can find, our bodies are literally STARVING for oxygen, every cell, organ, tissue. Starving, including our brains. So in my own opinion I think that is where all the psychological issues with anemia come from. It sucks. Having xanex is probably a good thing.
My stomach, well it's a mess too. It's been a mess and it hasn't cleared up at all. My last check my ferritin was at a 33, up from a starting 2. My stomach still tore up. I don't get constipation, exactly the opposite. I probably have some weird issue going on in there, I'm honestly to scared to get it checked. I'm afraid what they will find. I had an ablation in December due to heavy flows and I'm hoping and praying that does the trick otherwise I will feel so doomed.
Yes you can get iron from other things besides meat. Leafy greens and yes yes yes to the molasses. Just make sure it's "Unsulphured Blackstrap Molasses", nothing else. Eat a couple tablespoons of that a day. It's not that great tasting but it does contain nice amounts of iron. Also I suggest Hema-plex slow release. Check your health food store for both, our bodies can only absorb so much iron at a time and a slow release iron may help with the constipation as well as absorbing more because it's not all hitting you at once.
Insomnia is my best friend! I had a terrible ice pica but that has since gone, thank the lord because my teeth are now cracking because of it! Some anemias can actually indeed be hereditary. On the other hand in most cases anemia is just a symptom of a larger problem but you seem to be aware of that so I won't bore you with the blah blah there.
Now lets move on to ferritin. If anyone tells you ferritin of a 12 is normal you should probably be stand offish to any further advice they want to give you. Most of the symptoms you have listed, they are caused by low ferritin. Most people don't report feeling good til their ferritin reaches a level of 50-70. We are talking about a number that takes months & even years to rise. I started with a 2. I am now at a 33, well last check, it has been 8 months of me taking iron faithfully. My OB says I can plan on taking iron for another year. I am doing the oral route it goes up faster for people who are doing infusions because the iron is going straight into the blood where it needs to be. Unfortunately at the time of my diagnosis I had no insurance. Anyways back to ferritin, not something that goes up fast also the hairloss? You can blame it on low ferritin. Once your ferritin starts going back up you should see your hair return.
Anyways, it's late. The brain fog thing you mentioned I am Queen of so if none of this made sense I'm sorry, lol! A couple of other things I strongly recommend getting checked: Vitamin B12/folate (something us anemics tend to be low on) as well as Vitamin D. You can't overdose on B12 so I would suggest just getting a good Super B complex while you out getting your other items you need or maybe a B12 sublingual, little microdots that absorb under that tongue in seconds. Anyways that is all I have for now. Look forward to chatting and getting to know you better and again, welcome! If you need anything holler I always check the boards here.
I forgot about the visual disturbances which I feel like I am queen of, too. In the past I have had flashers, and floaters (sing this to the tune of the beginning of Rudolph the red nosed reindeer, hahah), and black spots, and blobs, blurred vision from my dry eye, blepharitis (a dandruff of the eyelashes which can make your ducts infected), and now I am having focusing problems. My eye doc says that my glasses script was too strong so he lessened it but I'm still getting bleary eyed and sometimes when I look at things up close for a while (ipad, computer, crochet etc.) and look up, I can't see f all for a minute. My eyes can't focus. I can't wear makeup as it makes my eyes get bleary, too. I have had lots of ocular migraines in the past as well. (Seen opthamologist etc. and they don't see anything wrong beyond simple stuff like the dry eye.)
Last night I was laying down to sleep and felt a little chest tightness sensation and I'm totally freaked out because I really don't ever feel that unless I have been exerting myself. Maybe it was an esophageal spasm (they feel a little the same -- you get this feeling like your chest is tightening while your throat is closing up or tensing, then it relaxes and goes away. I get it when I eat, usually, but I seem to be getting it more when not eating now as well. Usually it would happen first or second swallow of food.)
So now I'm in a bad dither over it, thinking it's my heart and that I'll die here all alone (hubby is at work and I work at home on the computer.)
Hubby got me some molasses but it's "Grandma's" so I don't know if it's unsulphered. I have to check. It didn't smell nice haha.
Does drinking water help anything at all? I think I'm dehydrated (esp from the 2 weeks not eating/drinking much) but I don't know if water helps any of these symptoms.
I woke up today and first thing on my mind is of course, the chest tighteyness I felt last night which only lasted a couple of seconds...now it's gonna plague me all day.
I also have this terrible habit of swallowing air and forcing myself to burp it up which of course also brings up acid which is probably how I got my GERD in the first place and I do it when I'm nervous which is almost all the time. (My GERD was dx'd by a pulmonologist who said I was wheezing due to acid in my lungs. Gastro doc confirmed with barium swallow.)
I have been to soooo many doctors it's CRAZYZYZYZYZY. I still don't feel better, though.
If a lot of my problems are due to anemia, then I can't expect that I WILL feel better because I haven't been taking care of that at all. And then when my docs kind of look at 15 and say yay you're at 15, no need for iron, I will never have a chance to get there and see if I can get higher or feel better. I feel like a SLUG. I never want to move, I'm always slow, tired, fatigued and something hurts and I can't breathe.
I must have been grinding my teeth in my sleep because under my tongue hurts a touch with like, nerve spasms or something under there. Oh wait, i'm grinding my teeth RIGHT NOW. hahah , I do so many things without even realizing. Then I think all the pains are from my heart.
I wish I had a friend who understood all this stuff. I think people just get aggravated and annoyed with me and I have to learn not to talk about my body no matter how bad I feel.
My doctor called me just now and I explained that chest tight weird oppressive sensation and he says that it is from being deconditioned and he wants me to walk, to exercise (granted I do NOT exercise and I am extremely out of shape and heavy since I gained all that weight. I used to take swimming lessons and now I have been sitting mostly on my bed all day since we moved to a new city and I can't find a gym here with a pool -- yeah it's crazy.) Anyway, yes I am really weak and out of shape and all.
My ferritin is 15 and he says should be 31-300. So he said I need to take one iron pill a day because if it goes lower I will be anemic again. My hemoglobin is 13.3.
He said ferritin is a marker for inflammation so he says that I don't have inflammation which is good and iron won't cause inflammation.
He is reassuring and trying to get me to exercise, and says I have to just work through my anxieties and do it. I guess I just have to take my iron and deal with the weird sensations until I get in shape again.
I used to live in NYC and walked everywhere and never had these problems; it was when I moved to TX and couldn't walk anywhere (need a car there) that my BP and weight went up etc. Now we're in Canada and again, not many sidewalks and nowhere to go if I walk. Just around the block over and over, I guess. Half of which doesn't have a sidewalk at all.
I need to go see my therapist, I guess. My cardio guy has been following me for about 2 years I guess now almost and he lets me call him when I have weird symptoms and he does take me seriously but I am out of shape and have so much anxiety. He says he does not see any evidence of heart disease in the tests and exams, and that I need to lose weight, walk every day, get in shape, take iron.
Last edited by Somnambulist; 01-28-2013 at 06:19 AM.
One day about 4 months ago I was standing in my kitchen (no fans) and I saw fan blades spinning in my outter vision, my vision was flashing in the corners. Full on panic took me over. I walked around my house in a daze. The blades started spinning closer to the center of my eyes, nothing but flash flash flash for about a half hour. After the flashing went away I got one of the worst headaches of my life and everything just seemed faded out. A few weeks later it happened again. I ended up going to the eye Dr. and he reassured me that there wasn't a lot of pressure behind my eyes and it was just an ocular migraine. I see dots all the time! Sometimes blue, sometimes black, then the ever so wonderful sparkly white ones.
On to the anemia thing, you need to be all over this now that the Dr. has said you need to take iron! Now is your chance, while taking iron labs are something the Dr. needs to be checking a little more often. If you hemoglobin and hematocrit haven't taken a complete dive and are up there the iron will take a little faster, so my Dr. tells me. Take the iron faithfully, give it a while because it does take a while to get where it needs to be and start working. Eat your leafy greens, meat, cook in cast iron, take your iron with a glass of OJ the vitamin C helps it absorb and lets not forget the lovely molasses (gag).
Ferritin seems to be one of the first things that starts to go down with anemia, then iron serum, saturation, hemoglobin, crit. So...do this and stick with it.
Baby steps as far as the walking goes. I had a hard time climbing stairs let alone walking around the block. Do as much as you feel comfortable with and don't walk so far that it's going to be hard for you to get back. I know exactly what you are talking about. You have good Dr's in your corner from the sounds of it. I stayed in bed for 3 months, there was no way I had the energy to walk. My thoughts are maybe take the iron for a couple weeks and see if you feel up to it and just walk a little bit at a time.
I always had the feeling of stomach fullness my Dr. wanted me to drink tons of water, but my stomach was just always to full and I had no appetite. Water will just keep you hydrated which is of course good for us anyways. I'm sure I could lose 40 lbs. if I ditched the soda for water, lol.
Iron deficiency can cause tongue pain. My tongue used to hurt so bad all the time but I always blamed it on the eating to much ice. My jaw used to stay clenched all the time and was so tense I would get extreme pain in my face just from holding my jaw tight.
Moral of my story, take the iron for a couple weeks see if you feel better then try walking. Don't overdue it, your anemic it's ok if you get tired and it's normal to have chest issues. Your heart needs oxygen to pump, lack of oxygen makes it work harder. Even a little bit of bleeding overtime can cause anemia.
The lovely ocular migraines!! I started with that around 1998 and I was playing a video game and man did I have a HISSY FIT. It started with a little dot in the center of my vision and it got bigger and bigger and shimmered in all sorts of colors and was just shimmering and shimmering, getting bigger and bigger in like an arc and it went towards the periphery of my vision and it took about 20-30 mins to fully fade away. I didn't get a headache with that but I have chronic sinus migraines since before 1997 anyway and I went to a retina specialist and all that when they finally said it's ocular migraines. Last time I had one was around May of 2008, and I had 2 or three in the space of about a week (I was pregnant and gave birth that week. I had one the day before giving birth and a couple in the week after.)
I also get hypnopompic hallucinations (since around 1998 as well!). These happen when I wake in the middle of the night -- I see stuff for as long as maybe 20 seconds. Usually it's patterns like gingham, checks, lines, dots, etc. and sometimes it's actual things. One time I watched a bi plane fly across my bedroom ceiling. They are always when I wake up from sleep in the middle of the night (not in the morning) and don't last very long, but sometimes it can be scary because you can imagine some person is in your room and stuff. I suspect a lot of stuff about "spirits" is due to this phenomenon. I have seen stuff like lamps and whatnot. Crazy stuff, eh?
My brain is easily overstimulated.
I will try not to worry about that awful chest feeling. I hate it and it's soooo creepy though. Today I also had a fizzy sensation in my throat (just under the voicebox area) and it felt clenchy, like it was tightening up and fizzy, like I had a lil pop rock stuck in there.
My belly feels like a giant BLOATY BLOB.
It was weird today I went up 3 flights of stairs at a good clip and was very out of breath but no weird chesty tightness. Then I was bending over to zip up my child's coat and felt it a bit. Isn't that strange? I can't tell why I get it sometimes and not others. It's so random. I just know I will not be bending down for stuff -- (i hate to even say that straining in the bathroom gives the same kind of chesty tightness so I do try to keep my guts from becoming clogged.) Also when I bend my stomach is pushed up to my chest and I have so many issues with the stomach.
Do you get any of that as well with your stomach and throat?
I have been taking an iron pill every day since Saturday so I shall continue. I will keep checking in here though because you're just so nice!! I feel so bad that you have to suffer like this, too. But you're knowledgable and know a lot! I had a steak today and some spinach and that's more food than I think I've eaten at one sitting in over 2 weeks now. I felt soooooo FULLLLL but I was hungry! lol
This sounds like me talking!!! I have EVERY SINGLE SYMPTOM! Even the dry eye!!!! My stomach is also a mess and have a hiatal hernia and all red and sore inside! My ferritin is a 6 right now and I am working on getting a second opinon because the doc I am seeing is not being helpful at all!!!! I feel good that I am not alone in this! I also have panic attacks and general anxiety pretty bad. I am glad we can help eachother and give information to get us through this!
I get everything, I always say one symptom bothers me more then others but the throat thing yes. They all bother me equally and yes it's all very random and at random times. I dread the panic attacks the most and my Dr. has been firm on treating the anemia to see if it helps with the depression and panic.
I lost my brother in October and was finally able to squeeze some Klonopin out of him, he wanted me to take it daily. I know he's not going to give it to me on a regular basis so I take it sparingly because I don't want to not have something if I need it and make an uneeded trip to the ER. They are scary. I worry about having them so much I'm surprised I don't have them more. I am just so ready to move on with my life and be done with this. I don't feel like my brain will allow it. Just to much all at once.
I have also become super hypocondriac (spelled wrong I'm sure). My Dr. also likes to call me OCD, I don't buy it. I just think sometimes it's easier to say your depressed take this then get to the bottom of things. I do that myself, he wasn't going to check my B12 and D. I did some research online and demanded that he do those test, "I think your fine". I said lets do them anyways? Guess what, I wasn't fine. Both were horribly low. Another reason to feel crummy.
Worry I really hope you get a 2nd opinion! You are never alone, all these symptoms are very real and they are very scary and terrible to live with!
The Following User Says Thank You to Heatherx5 For This Useful Post:
I have ocd also! hypochondriac is my middle name!! my depression has gotten a bit worse. I have an antidepressant that I have not taken yet. My Family is not that supportive and that is tough. It helps so much to relate to everyone. Sometimes I feel sooooo tired! I have 2 kiddos so I dont have time to relax. I am getting a second opinon, no doubt! thanks again Heather!
Three years ago I went through my first 8 infusions. I started out being tired but nothing like this time.
I had the first of my 8 infusions last Thursday (second go round). I gasp for breath when I walk. I had to stop and rest on the way to the doctors office. I teach school and I gasp for breath anytime I have to move which is often. I also crave ice this time and didn't the first time. My hemoglobin is at 8.3 and hopefully it won't be too many more weeks that I can breathe better.
Do any of you have the gasping to breathe?
I go for my second infusion at 9:00 today. I can't walk 10 feet without the heavy breathing, pounding heart and chest tightness. I don't know how I am going to get to the doctor;s office. I have someone dropping me off in the emergency lane but can't walk to the office. I am to the point of being scared my heart is going to cause an attack. Major problem is I can't walk but about 5 feet.