Ronnetta Griffin, Iron Disorders Institute


I was slowly and silently dying but did not have a clue that I was within an inch of losing my life. A heart attack was right around the corner. I was feeling run-down and exhausted, frightened because of heart palpitations, shortness of breath, foggy thinking and at night suffering with Restless Leg Syndrome (RLS). I had the constant urge to "eat" ice despite the fact that I was always freezing and couldn't get warm.

Eventually, I concluded that my symptoms were caused by drinking too much iced tea – up to six glasses a day. I wondered if it could be the caffeine and decided to kick the habit, but as soon as I did it was like hitting a brick wall. I totally crashed. Caffeine had been the only thing keeping me going! (Later, I would learn that although the caffeine was combatting my fatigue, the tannin in the tea -- also found in coffee -- was blocking my absorption of iron. The tea had been creating a vicious cycle!) After four days on the sofa, nearly lifeless, lacking the energy to even brush my hair or care for my two boys, my husband took action. He carried me to the doctor. My hemoglobin was 6...less than half the minimum normal range of 12-16. My blood cells, which should be plump and full of oxygen, were shriveled like deflated life preservers!

After an immediate series of iron infusions, I eventually would be able to get back on my feet. But while sitting in that infusion lab for four days, I vowed to learn more about my condition. I started researching and talking about anemia with anyone who would listen, and I was shocked to learn that I wasn't the only woman in the dark about this deadly disorder. With help from the Iron Disorders Institute (IDI), I learned that with simple changes in my diet and occasional iron supplementation, I could take control and do a better job of maintaining my iron health.

As a daughter, wife and mother, I want other women to know the dangers of anemia and seek help before it's too late. As a former Miss South Carolina, I realize the power of having a public platform and sharing my story to help raise awareness. I’m honored to help advance IDI’s vision that “No one should suffer or die prematurely because of Iron-Out-of-Balance™.”

~ Ronnetta Griffin
Director of Public Relations
Iron Disorders Institute 

Read my handout

21 comments (Add your own)

1. Sondra wrote:
I had my first infusion in 2009. My last one was 3 weeks ago. I am now down to every 2 months. HELP I do not know where to go from here.

Sun, March 10, 2013 @ 2:09 PM

2. Jasmin wrote:
I also put off taking my iron pills because of the side effects and the fact that I had to take a pill everyday for a long time. In order to see improvements in symptoms, it would take months on the ferrous sulfate pills. I just up and quit, deciding I could deal with the symptoms. It's been about a year and now my symptoms have tripled in intensity, I feel like I am going to die. I read this and decided that I should stop putting this off and get my act together. Going to the doctors tomorrow. Thanks for sharing your story!

Thu, July 25, 2013 @ 11:25 PM

3. Deb T. wrote:
It is so scary finding out how low iron can cause so much problem as you described. I was so short of breath and weak. My levels were low enough to make my life miserable.

I have had RA and FM for 30 years so everything was throw into this bucket! I just thought this was causing all these problems.

Then my brother died at 45, He had hemochromatosis and Hep C, we found out in the final stages. :( I since had the test and am a silent carrier and so far a sister is a carrier too.

Finally a couple years a go the PA asked me to try iron, I did and I was so constipated. I could not live like this either.

I went to my local health store and Linda told me about Nature's Plus, Hema-Plax. It took 1.5 years to bring my levels into normal middle range. My PCP decided that I may do best in the middle area than lower. I felt so much better on this supp.

I am feeling better. But a weird thing happened. I was still having all the heart stuff, fatigue, brain fog, weakness and full body pain. This was all blamed on RA. I have A Fib for 2 years, then began the PVC's and the other heart palps...It was happening all the time.

My RA Dr asked if I would begin a new drug called Acthar injection to help my adrenals and pituitary gland to function once again due to long term prednisone use. This injection is powerful No more heart issues...I can walk better again.. I have been cleaning my house like I have not in years! It lasts only 2 days then I feel yuck again, but it is so weird. I wish I could feel this way all the time again. I take 2 shots a week on Tuesday and Friday.

I pray this keep working I love this new life and body! I even look younger when I see myself in the mirror!

Sorry I got off on a tangent, but my life is so complicated with all these health issues and my Dr's do not know how to help me. I pray this injections help me for the rest of my life.

But thanks for listening! :)

Deb

Wed, December 18, 2013 @ 12:24 AM

4. Christina wrote:
Thanks so much for this site. I literally have the same story as Ms. Griffin; I've just had the blood tests and I have only 9.5g/dL Hgb and I'm extremely iron deficient and a little anemic.
I had no idea that it was so serious. I, too, tried iron pills a year ago but decided to go the diet route. That obviously didn't work.
I have to go to an infusion center in four days. I'm thankful to find your site.

Thu, May 1, 2014 @ 3:40 PM

5. georgina wrote:
hi... iv had ida twice in the past three years ...im on ferrous fumerate twice a day and still tryin to raise my ferritin levels higher.... they have been 5 both times and the first time they were raised i was taken off iron...bad move as within the year they went rite back down .... this time im bein kept on them... iv jus hit normal range but the low end at 32 and iv heard it needs to be at least over 70!!! the first time i was bad with severe dizzy spells allways tired and at times i couldnt even get out the bed without help as the room was spinnin..cold hands to a point they went yellow.. sum breathlesnes too.... my docs took ages to diagnose ida sayin it was pollen... stress...ect!!!! as i suffer panic attacks aswell( no wonder with levels so low tho aye) sigh...... this time iv had same symptoms but with added hair loss ulcers and realy bad palpitations that have put me on the floor at times... now my ferritin is 32 the breathlessnes is improved and hairloss but im still very tired and have palps... not as reg but still there.... it amazes me how so many docs are just not up on this at all and it can go on undiagnosed leavin you so ill untill someone finally tests right....

Wed, May 21, 2014 @ 10:10 AM

6. Nana wrote:
I had been perpetually ill for months before finally going to the hospital and finding out that I needed a blood transfusion because my iron levels were so low.

Sat, March 14, 2015 @ 9:06 PM

7. GingerJ wrote:
I guess, I'm extremely to find an ob/gyn, who took me more serious than my new (soon to be hold) primary care physician. My periods got extremely heavy and I ignored/didn't notice the creeping fatigue. I did start to notice that I seemed to have no lung capacity while dancing, something I had been doing for years. I've been dealing with it for over a year.

Back in Oct, I thought I was having a heart attack and went to an Urgent Care and they diagnosed it as a hernia. Said my blood work was fine. Things seem to be getting worse. I went in to get a "free" test from RedCross, even though I knew they would refuse my blood... they did... iron wasn't high enough... when I asked what it was, they said their machine only went to 10 and mine was below that... I didn't do my research then.

Fast forward to the past couple of months, things were getting even worse and then I realized a lot of my symptoms felt like my blood pressure was "bottoming out." Two weeks ago, serious enough that I finally went to a doctor. First time (other than the Urgent Care) in probably 20 years. They had me in for a blood transfusion the very next day.... my hemoglobin was 4.1. The infusion nurse wanted to know how I was walking. Two pints of blood later they sent me on my way. The PCP called in a script for iron tablets even though I told him that it wouldn't stay down.

My obgyn has been a knight on a white steed. He's called in a favor that and I received 1 of 2 iron IVs today. He said my counts are so low that I probably won't feel better after this one, but the second one next week should bring me up.

My HGB after the two bags of blood is now 6.0, my iron saturation is only 2% (should be 15- 50) and my Ferritin is currently only 4 (not 50). I feel like Dr P will get this solved. And he's been very concerned about the possibility of cardiac arrest as I currently have what he called a heart flutter. He wants my HGB up to at least 11.5 before he removes the fibroids he thinks is responsible.

I'm just tired of being tired and folks really not understanding that I'm not as functional as I appear.

Wed, May 13, 2015 @ 1:49 PM

8. Gina wrote:
Hello, I take Iron (Ferrous Sulfate 325 2 x daily).

Fatigue/Weak, rapid heart rate (up to 133 - with just 1 flight of stairs), Hemoglobin low @ 7.2, Folate High, shortness of breath, constantly chewing on ICE. Bloating, Pale skin. Achy. Headaches.

Note: I have been anemic off & on since teenager. Again when I was pregnant/nursing, and now again during perimenopause (2 years). However prior to this recent IDA crisis I would walk 2-3 miles day - no problem - now I am out of breath walking to the corner.

I am a busy wife/mom + I work F/T, but crash when I get home, take naps whenever I can on the weekends. Don't know how much longer I can work at this pace. However, I am sole provider in our house so I keep up the pace. I barely have the strength to keep up laundry. (Thankful kiddos keep up some of the kitchen work)

I eat the leafy veggies, and the red meats, citrus (love mandarins) etc., But now after reading your site I will be conscientious of the BULLIES (I constantly drink iced tea ;) but watched your video on the Buddies vs. the Bullies.

Doc has ordered IV Iron Infusion treatments x 2. (Pending insurance authorization). Hoping to feel better soon.

Mon, June 8, 2015 @ 7:31 PM

9. Elizabeth whitson wrote:
Can you take tea and coffee out of this. I've suffered for years on my death bed not moving eating drinking showering. I'm 48. I have finally just gotten help from a new doctor and iron transfusions. I've had every symptom you can. I went crying to my doctor of 35 years monthly for decades. I'd start iron and again the iron gone at the next dr. Apt and that's all he did. Say I'm anemic. I never ,stupidly cared or new anything about it or I'd have digonosed myself much sooner. I drink none but water. You do not have to drink any coffee or tea or caffeine products to end up here. Is there a huge study backing that in anyway. It's like a kick in the face. Well just stop drinking tea. No , Never will that help anything. Is there anything you can take while waiting for the iron to absorb. I feel it working , but am still miserable. Thanks for this site.

Tue, June 23, 2015 @ 4:17 PM

10. wrote:
I just turned 60 and this is my second time with iron deficient anemia. I had a blood transfusion the first time and this time being post menopausal, the doctor out me in ferrous sulfate 325x 2 day. My energy seems to be getting better but I am suffering badly from bone and joint pains. The pain has worn me down so much I don't do much but sit at my work desk all day and nothing extra. I try to go out shopping and each time I do, my knee aches so badly that I cry like a baby. It's debilitating and Im afraid. I've been run down because my husband was diagnosed with pancreatitis and this destroyed our lives but at least I had my energy then. Now my fear is I can no longer care for him and he actually has more gumption these days than me. I'm just down and out and fear I have some dreadful bone disease. This site has been my only help. Thank you

Wed, September 16, 2015 @ 9:01 PM

11. Nina wrote:
Hello I just recently started with some of these symptoms and was told I had low iron. But my question is, I know low iron can cause RLS (restless leg syndrome) but has anyone felt just your whole body restless? Like you have to constantly move around?

Mon, February 22, 2016 @ 10:12 AM

12. wrote:
I have been suffering from anaemia for over 17years.am 33 now only now I started taking my iron supplements seriously because am in my final year of medical school and trying to prepare for my state exams! My problem is I eat sand, just can't live without it.

Wed, March 30, 2016 @ 11:25 AM

13. Jess wrote:
I was diagnosed with IDA a few short months ago and was prescribed iron tablets but within a week of taking them I was throwing up daily and it got to the point where every time I moved I threw up I haven't taken them since and don't know what to do now as most of my symptoms are coming back

Sun, April 10, 2016 @ 4:26 PM

14. Feeling Faint wrote:
Thank you so much for posting your Venofer experience! It was so helpful to me. Most online posts on the topic are frightening and/or negative. I have added my experience below for those who are facing their first infusion in hopes that it might help them get through. I spent a LOT of time searching forums for other people's Venofer experiences (and completely freaking myself out in the process). Hopefully this will help to put another anemia sufferer's mind at ease about getting iv iron.

First let me say, I arrived at the infusion center this morning already wound up into in a semi-panicked state. Reading online about all of the possible horrifying outcomes had made me a nervous wreck. I mean, totally cuckoo. One would think I was heading into an appointment to stand before a firing squad. My heart rate was through the roof (and it already works hard on account of the anemia). Morbid thoughts hijacked my brain. Will this be my last day on earth? Did I forget to tell anyone that I loved them this morning? Will it be over quickly if I am one of the unlucky ones or will I suffer for a long time in my anaphylactoid state? Seriously, off the reservation panic had gripped me. I'm surprised I didn't turn tail and leave.

But it was all for nothing.

This morning's infusion was such a non-event, I'm still in a pleasantly surprised state of shock about it. In fact, I'm *almost* looking forward to my next one as I really want to feel better, and I look forward to not dragging myself through every day in a dizzy haze once the iron kicks in. But back to the infusion . . .

I had a wonderful nurse. Couldn't have asked for anyone better. She wrapped my arm in a hot blanket for a few minutes to get a vein to show easier (i'm a tough stick--female, small veins). Then she inserted the iv. I hardly even felt it. She hooked up my iv to a little machine that mixed the 200 mg Venofer solution I was scheduled to receive with a certain percentage (not sure how much) of clear saline. That's all I got. They do not give Benadryl, Tylenol, steroids or anything else before or with the iron unless you have a bad reaction.

Then she started the machine--and my panic soared to new heights! My semi-calm facade quickly melted, and I was near to hyperventilating once more, worrying about what would happen the moment the iron hit my veins. The nurse was so concerned that she took my oxygen level (using the thing that clips onto the finger) just to make sure it was still good. It was even though I felt like I couldn't breathe. By this time she was probably considering slipping a Valium into my drip!

I stared with dread at the brown liquid snaking through the iv. The seconds and then the minutes ticked on, and what do you know? I was still alive. I didn't feel any different. Everything was fine. I did notice a slight metallic taste in my mouth, and the nurse said that's fairly common so no worries there. After a few minutes I also noticed my left hand was tingling a little (the iv was in my right arm). But that was it. And it was a very mild tingling sensation, almost like it was just starting to fall asleep. The nurse said that was not a problem. Nothing else tingled, itched or hurt. After about 5 minutes my iv arm started to sting where the iv was. The nurse said that iron can often be irritating to the vein. She added more saline to the mix and slowed down the infusion rate a little. So what was supposed to be a 10 minute infusion ended up taking about 20 minutes--not that I cared. When it was done dripping, they unhooked me but left the iv in because they always monitor patients for 30 minutes after the iron finishes *just in case* there are any delayed reactions. I had no side affects at all. My left hand had quit tingling almost as soon as the iron finished. I left the infusion center and went straight out to eat lunch. I have felt no ill effects from it at all. I will be much more relaxed when I go for my 2nd of 5 infusions next week. Not my first choice of how I'd like to spend my morning, but nothing to get so worked up about either. This post is not meant to make light of the people who do have bad reactions as I know they do happen and it's an individual thing. But I wanted to put something positive out there to balance out the bad reports.

Do it without hesitation if you need it!

Thu, May 19, 2016 @ 4:20 PM

15. Nora wrote:
Thank you so much for hosting this site. It is such a relief to know I am not the only one suffering anemia. I wish I knew the cause of my deficiency and I am encouraged to hear of others who have been suffering for years (meaning the deficiency is not caused by something imminently fatal). I have a husband, children, a career and so much to live for! I hope my energy will be back soon, as I love running and exercising and want to be able to do all that again soon. Now I can't even vacuum my house without having to lay down for a break! I am having an iron transfusion next week.

Fri, May 20, 2016 @ 8:48 AM

16. Faye wrote:
After being on the birth control pill for just a few months, I developed fibroids and as a result had 14 day periods with very heavy bleeding (up from 5 days, light flow prior to the pill). My iron got very low, I almost blacked out a few times, very weak, out of breath just going up stairs. Dr said if iron got lower I would need blood transfusions. As I don't have health insurance, I tried supplements as a first resort knowing that the root of the problem that ultimately needed to be addressed was the fibroid.

I first tried chewable iron supplements - I don't recommend them. There is a type of bacteria normally present in the mouth in small amounts that thrives on iron; they are not dangerous however they form a black film around your teeth. It looked like I had outlined my teeth with a magic marker!

I seem to handle liquid iron supplements the best, my choice being one from Gaia called plant force liquid iron. It is a whole food supplement and I have none of the problems other supplements caused. Made a huge difference in how I felt in a short amount if time.

I have managed my fibroids through alternative treatments and as a result, my periods last only 8-10 days, not what they used to be pre fibroids but much better. Ultimately that was the cause of the problem and supplemantation was secondary. My iron is finally borderline normal, though still needs some improvement. I no longer use the liquid supplement, I recently purchased an item called "lucky iron fish". It is a chunk of iron, in the shape of a fish (fish are considered good luck in some cultures, thus the shape and name). One places it in their pot when cooking thus leaching the iron in the cooking food and increasing iron intake. A very good option to consider if one can't tolerate supplements. One can also use iron cookware with same effect. Just be careful with feeding friends and family that don't need the extra iron!

Good luck to everyone.

Sun, June 5, 2016 @ 6:56 PM

17. Wanda clark wrote:
Wow. I started throwing up on monday. Tried to work on Wednesday an my precious coworkers sent me back home. Went to dr on thursday. Had infection, gave me antibiotic, echanacea,. Thought med was making me worse so stopped it. Stayed dizzy, rls, couldnt breath. Went back to dr an nurse looked at me an said youre anemic. My dr came in, said same thing an realized wasnt any better. Did blood test
An told me what could happen, but if would go home, flood body with fluids an keep takin (iron,potassium,magnesium,echinacea)this was on friday an called me on Sat. Everything was low, red, white, hemglobin. She made appt with hematologist, i had seen couple years earlier with low platelet count. Platelets are stable. He ran blood test, this was on tuesday. Counts had come up a little. Did first iron infusion while was there. Scheduled colonostopy see if loosing blood. So far no reaction to infusion. Rls has stopped. Can walk to car an back now without stopping. Stil low energy, but all ive read,may be week to month to really tell difference. Go back for labs on Aug 3. Have colonostopy scheduled for aug 11 but my reg dr is trying get someone quicker. I have been blessed with drs who cared an will work with each other.

Wed, July 13, 2016 @ 7:21 PM

18. Wanda wrote:
Also changed my diet. Lots of dark green, just about anything thats suppose to help your blood, im eating. Our garden stuf is coming in an my dad(87yrs old) keeps me stocked with fresh vegies. Our super consisted of Shrimp an asparagus, spinach salad with tomatoes, cucumbers an green peppers. I drink water with turmeric, lemon juice an black pepper. I am starting to raise some of my own herbs to. Oh i am also diabetic an have ibs. I have a wonderful church that are constantly praying too..

Wed, July 13, 2016 @ 7:34 PM

19. Helen wrote:
I woke up last week feeling tired and dizzy but put it down to not drinking enough and lack of sleep. As the day went on I started getting chest pain and feeling breathless. Noticed stools were black . I went to the emergency dept and had a bp of 60/40 started vomiting coffee ground (blood) .Had a gastroscopy which shewed a bleeding peptic ulcer . On iron and ppi. Home now feeling drained having lost 3units of blood . Extremely scary experience. Helen

Thu, July 14, 2016 @ 4:56 PM

20. Nikita wrote:
Thank you guys for helping to feel not alone. I was so tired of my family and friends saying oh you look fine just take a nap eat better I felt like I shouldn't complain because so many have it worse I didn't take any of this serious until I was sent to the emergency room for a blood transfusion my hg levels where a 5 when I came into the er even after the blood transfusion I still felt out of it I began iv iron infusions two weeks later I am doing better but some days are just bad days I am I tired of people telling me to get over it I would continue to eat healthy work out and take iron but I think this is something I am just going to live with.

Sun, August 7, 2016 @ 1:59 PM

21. Jane wrote:
I've been suffering with fibroids for almost 10 years now. I had a myomectomy and a laparoscopy done but the fibroids keep coming back. Fortunately for me I do not have heavy bleeding but unfortunately though I have very painful periods, back and leg pain and the fibroids also affected my fertility. I have been trying to conceive for 7 yrs but nothing happen. In addition to the fibroids, I also have endometriosis and cysts. I tried almost everything and nothing seem to work. I had almost given up hope of becoming parents. A friend of mine recommended me to http://iyareyarespellstemple.webs.com/ Priest Iyare and he did a spiritual breakthrough for me to make me get pregnant, within 3 weeks I contacted him i got pregnant (naturally!!!) I am writing this message for those women who are at the stage I was at depressed with no light at the end of the tunnel give Priest Iyare a try to help you solve your problem and hopefully you’ll have the same success that I have had. Here is his website http://iyareyarespellstemple.webs.com/

Wed, November 16, 2016 @ 6:24 PM

Add a New Comment


code
 

Comment Guidelines: No HTML is allowed. Off-topic or inappropriate comments will be edited or deleted. Thanks.

Iron Tests

Now you can purchase Iron Lab Tests from the comfort of your living room. The process is simple: visit our tests page, purchase the tests you want, receive a prescription right on the site and take it to thousands of lab centers across the United States. 

Purchase Now

Buy The Book

Guide to Anemia is an excellent resource for the Iron Deficiency Anemia patient. This book is backed by world-renowned Physicians that specialize in the field of Anemia. The book also boasts personal stories, genetics information, and much more.

Learn More

IDA & Diet

Diet is such a vital aspect of the Iron Deficiency Anemia patient's journey. This is why Iron Disorders Institute created a diet page specifically for the IDA patient. On this page, you can get diet tips, recipes, and much more. Follow the link below for more. 

Learn More