lieze Posted October 18, 2011 Report Share Posted October 18, 2011 Just got back from hematologist.I am emotionally devastated.I just feel so so bad I'm so weak.I'm shaking and scared knowing it's that low and knowing I need to get infusions of iron.I react to everything and I'm scared.My iron saturation is only 3%.No wonder I feel so absolutely horrible.I just want to curl up in bed all day. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted October 18, 2011 Report Share Posted October 18, 2011 I am so glad you have something that can be "fixed". I know it won't be easy, as you say with all of your reactions to things. But, getting just this one thing fixed could help in a lot of areas. I know you have alot of anxiety. Maybe getting your iron levels up will help that, as your body won't be in panic-mode all the time desperately trying to get oxygen to your brain and cells. This could be a great thing for you in getting this fixed!! When do you start? Quote Link to comment Share on other sites More sharing options...
lieze Posted October 18, 2011 Author Report Share Posted October 18, 2011 I told them ASAP.They have to get me precertified with insurance to cover it.So they will be calling me soon to set something up. Quote Link to comment Share on other sites More sharing options...
kclynn Posted October 18, 2011 Report Share Posted October 18, 2011 Have they tested this before? There have been some recent conversations about low iron, I think. So sorry it might make you feel bad before you feel better Keep trying to look beyond, and it might not make you feel bad. Breathe... Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted October 18, 2011 Report Share Posted October 18, 2011 Hi lieze,Imho, this is great news as it gives you something to work on. Did they test other nutrient levels too ?Fwiw. I'm hyper sensitive and I was ok with the one iron infusion they gave me. My iron loss was from heavy extremely heavy menses that my NEW gyn eventually stopped by giving me a shot. I had to fire the other one for not helping me. I felt so much better once this reached a normal level. I use a cast iron pan when I remember to keep my iron levels up now. Tc .. D Quote Link to comment Share on other sites More sharing options...
sue1234 Posted October 18, 2011 Report Share Posted October 18, 2011 I'm wondering along with kcmom--is this the first doctor to find this? I am so glad you get to get it done quickly! Let us know how it goes. Quote Link to comment Share on other sites More sharing options...
lieze Posted October 18, 2011 Author Report Share Posted October 18, 2011 I am very discouraged about this.Apparently it's been going on and no one has caught it.When I called my doctor she indicated it was no big deal and I did not need to see a specialist.He obviously thinks it's concerning enough to order IV infusions weekly.Another catch-insurance doesn't want to pay.I told them I will pay upfront for each infusion.They are finding out a cost for me. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted October 18, 2011 Report Share Posted October 18, 2011 That is wrong! Why would insurance not pay?? You should not have to pay for a necessary procedure. Quote Link to comment Share on other sites More sharing options...
Maiysa Posted October 18, 2011 Report Share Posted October 18, 2011 Hi Lieze,I'm new to the forum & dystauonomia, but am not new to iron deficiency. My ferritin level (iron storage) was down to 1 not long ago and they give blood transfusions at 2 or 3. I refused that and the iron drip, since I can't even take a simple iron tablet, I didn't think it would be a good idea. It's been a battle for five years and mostly all of my life. If you can take iron pills, ferosol is the easiest on your stomach and take it with some form of red meat to get it to absorb quicker. I have found... and I hate it with a passion, I have to eat liver. YUCK. But the doctor told me I have no choice. But the iron in liver is 100% immediately absorbed. When you take an iron pill it only absorbs about 10% of the dose, but liver has anywhere from 10 to 18 mg. of iron and is not hard on your liver and has lots of other vitamins. Also if you eat spinach with it, it causes the spinach to absorb 300% of the total iron in spinach. So always eat liver with another iron source. I find that if I cut up bite size pieces of liver and fry it with potatoes and add a little bit of soy sauce and salt and possibly onions or onion salt, I can't taste the liver. Also, I take a children's vitamin from Target (it contains iron but not niacin which I can't take) and it carries 18 mgs of iron for wimpy stomachs like mine. Within a few days I can start to feel better. I'm anemic right now from a few terrible cycles, so I just ate the liver and potatoes. But before I realized I was anemic I was very dizzy, so tired, my legs felt hollow, I have terrible headaches, nausea and my muscles ache so bad, and it causes every symptom of the dysautonomia to worsen. Mayo told me to never let myself get anemic because it is a huge trigger for dysautonomia. Now, you might feel better in a few days, but that doesn't mean that you can quit taking the iron. Once you have depleted your iron levels it can take 3 months to a year to get it back to normal. Sometimes I don't feel anemic and then I start to feel terrible and sure enough I go to the doc and my levels are low low. So don't get too confident that it's passed if you feel better, keep up with iron. Also, buffalo burger has the highest amount of iron in the red meat category. And it makes a tasty burger. But be sure to eat some fruit and lots of water as iron can cause constipation. Also, you have to get your liver levels checked if you take large doses of iron. If you have any questions let me know. Good luck and good health to you! Hang in there. Quote Link to comment Share on other sites More sharing options...
Katybug Posted October 18, 2011 Report Share Posted October 18, 2011 Hi Lieze. I'm sorry this is another thing added to your plate. I know you really didn't need it right now. I don't have any great solutions but I am sending good energy your way and want you to know that I am thinking of you and your kids. I send well wishes and a big hug to you. Hang in there....Katie Quote Link to comment Share on other sites More sharing options...
lieze Posted October 18, 2011 Author Report Share Posted October 18, 2011 Thank you : )I am completely feeling overwhelmed.I am still staying with my mom but they do not recognize how weak I am and pester me to do more.I have daily trips across town to make to take my son to preschool and pick up the kid's.Our home causes me great stress due to the mold or whatever it is in the air there.So I sit in the car for hours nibbling on food.The kid's are so cranky and whiney.It would be a big enough task to take care of them without all the behavior.I'm sure all of this is hard in them too and causes them a lot of stress.My husband goes for his colonoscopy and procedure to clean up from the tumors they removed 6 months ago on Monday so this was a time I needed to step up and do more and I don't even feel at this point that I can do my own tasks let alone take on more.Come to find out his parents are headed to Florida for several weeks.We are to get possession of our new home in less than two weeks now and I just have no idea how we will handle that.It's just not a good time to go down and I just don't know what to do. Quote Link to comment Share on other sites More sharing options...
Katybug Posted October 19, 2011 Report Share Posted October 19, 2011 Lieze, I know it sounds cliche, but, ONE thing at a time, one day at a time. Try to focus on the thing that has to be done next, not all of the things that have to be done. And, if you have any experience with meditation, try to find just 5 mins. a day to meditate so you can completely clear your mind. If you haven't done any meditation in the past, a really easy book to learn "everyday" meditation from is "Where ever you go, there you are" by Jon Kabat-Zinn. It teaches how to do meditation while doing everyday tasks. And, it has really short chapters and is an easy read. I was helped loads just by reading the book as it teaches being present in the current moment as opposed to living in the "what ifs". Quote Link to comment Share on other sites More sharing options...
lieze Posted October 19, 2011 Author Report Share Posted October 19, 2011 You are completely right-after writing what I did I thought hmm it sounds like I just have a rough couple weeks ahead and then things should get a bit easier.I am stressing now though on this iron treatment.I looked on the Internet and it looks like it can run anywhere between $500 and $1000 per treatment. Wowzers!!! Quote Link to comment Share on other sites More sharing options...
roxie Posted October 19, 2011 Report Share Posted October 19, 2011 Lieze, I am positive this is contributing to your weakness & tiredness.Earlier this year I started following this articlehttp://www.hospitals...-pots-recovery/She talks about her iron problems with POTs, among other things. I decided to get better testing & found out my ferretin was 5 (it should be 70) & my saturation was low too though not as low as yours. I also has to fight dr's on it.The woman who write this article recommend this type of iron & it's what I'm takingwww.amazon.com/gp/aw/d/B001AS9PLG/ref=redir_mdp_mobile/187-6703801-5919466In the beginning I was a bit nauseous but I've been doing alright with it. I also take it with a buffered vitamin c powder to help with absorption. My numbers are creeping back up BUT the biggest thing is how much my achiness & weakness has gotten better. I'm not strong by any means but that feeling if my muscles hurting down to the bone or that they are about to give out is mostly gone. Quote Link to comment Share on other sites More sharing options...
lieze Posted October 19, 2011 Author Report Share Posted October 19, 2011 i hate bananas can you try to post the type of iron you take again? I think part of that may have gotten cut off.So the ferritin level is iron storage.Mine was 13- I remember 3? Years ago it was 15 but I felt much better than I do now.I did see a liquid iron called spa tone? That is supposed to be totally natural.I think CVS carries it and it's supposed to be easily absorbed.I did also see that the insurance representative gave me wrong information not sure it will make a difference bit she indicated that iron was not FDA approved when in fact Venofer is an FDA approved drug ( which is what he ordered ) so I'm not sure it will make a difference but I'm going to call and check tomorrow. Quote Link to comment Share on other sites More sharing options...
Maiysa Posted October 19, 2011 Report Share Posted October 19, 2011 Lieze, Yes, ferritin is iron storage. Your red blood count/RBC is where the iron should come from but sometimes it steals from the warehouse/storage house first. Sometimes RBC can be normal even if your ferritin or saturation level is low. There is an iron liquid supplement called Herbal Iron that is very good too-it's a syrup and doesn't carry B12 which can cause panic for a lot of dysautonomia patients. Although, B12 is important for those who have low amounts-it helps iron absorb, but I found out the hard way, B12 can do strange things to blood pressure and heart if you don't need it. Also, be careful of Floridix liquid iron supplement-it has ALOT of B12. But that's only if you don't need it. Have you had your B12 checked? Don't worry, if you can't get the iron drip right away, you can help yourself through your doctor with supplements. There are alot of options. It sounds like you have an overwhelming situation happening. Sorry to hear. Hang in there. Quote Link to comment Share on other sites More sharing options...
lieze Posted October 19, 2011 Author Report Share Posted October 19, 2011 Thank you for the reassurance-it really means a lot to me.I am munching little bites on flinstone with iron.I do only little bites because it contains corn starch and I have a corn allergy.And drinking pediasure sidekicks-they have just 15% of iron but have milk and I know milk inhibits iron absorption.I also ordered the spa tone liquid spring water with natural iron which is supposed to be easily absorbed and am thinking to check with the farmer I get pastured lamb and beef to see if he has any liver?My mom also purchased a cast iron pan.We are trying everything we can think of.The chest pain and weakness really is the pits. Quote Link to comment Share on other sites More sharing options...
roxie Posted October 19, 2011 Report Share Posted October 19, 2011 It's called cypress poly-ironhttp://www.amazon.co...rce-full-site=1And if you take the liquid, use a straw & put it in the back of your mouth bc liquid iron can turn your teeth black Quote Link to comment Share on other sites More sharing options...
lieze Posted October 19, 2011 Author Report Share Posted October 19, 2011 Ha ha it might have been a typo but you wrote to take it with a straw because it can affect your feet! I'm glad we can laugh...anyway...This is what I ordered and wanted to share.http://www.nelsonsnaturalworld.com/en-gb/uk/our-brands/spatone/ Quote Link to comment Share on other sites More sharing options...
sue1234 Posted October 19, 2011 Report Share Posted October 19, 2011 I am laughing as I write this--use a straw or your feet will turn black!! LOL! And, I hate bananas, I'm not laughing at you, just your previous typo--I knew you meant teeth! Yes, we do need a good laugh sometimes!Leize, I hope your insurance ends up covering it. Getting your iron levels up may make a world of difference in how you feel. Quote Link to comment Share on other sites More sharing options...
lieze Posted October 19, 2011 Author Report Share Posted October 19, 2011 Thank you Sue I did look up the Venofer and it is an FDA approved drug the insurance representative got that part wrong-I do feel nervous about taking it though I read it is very effective in raising Hmg and ferritin levels in a short time but there have been fatal reactions to it also. Yikes biting nails. Quote Link to comment Share on other sites More sharing options...
roxie Posted October 19, 2011 Report Share Posted October 19, 2011 Hahaha- autocorrect. I meant it can turn your teeth black! Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted October 20, 2011 Report Share Posted October 20, 2011 Sorry - I can't read a lot right now ...you may have already said, but just wondered why your iron is low? Is it because of diet or is there a disorder at work? I hope getting in some iron will be easy and make you feel much better! This seems like such a simple thing to check - how are they just now finding out? Quote Link to comment Share on other sites More sharing options...
Maiysa Posted October 20, 2011 Report Share Posted October 20, 2011 Hmmm....I thought about the iron turning the feet black and thought, wow I am lucky to never have had that. Haha. Black teeth makes much more sense. Quote Link to comment Share on other sites More sharing options...
lieze Posted October 20, 2011 Author Report Share Posted October 20, 2011 I am wondering myself how long this has been going on and this is why... It's been 2 years since I had that ferritin checked and it was 15 now I am 13 how do I know that I haven't been chronically low?And then during my pregnancy my son is 5 now my hemoglobin was down to 8.So since I have not followed this I have no clue.I ask everytime regarding hemoglobin and it's always pretty good but iron levels could have still been low I'm thinking. Quote Link to comment Share on other sites More sharing options...
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