Ferritin Level Of 9 ?

[carecare]

So I went in to have my celiac panel run. The dr ran some other stuff too. My ferritin level is 9 and it says standard range is 8 - 252. Would I just be considered just on the low end of normal or do you think I would be considered pretty low? Also, if ferritin has to do with Iron...then why does it appear my iron levels are normal.

IRON 128 50 - 170 ug/dL

IBC 388 250 - 450 ug/dL

% IRON Saturation 33 15 - 50 %

I think that was the only thing in my bloodworkup that seemed quite low. Haven't gotten the celiac panel back yet. Hoping I'll see it listed by the end of the day.

CC

[carecare]

So I've done some reading on ferritin levels. Hmmmm...still not sure what to think. I guess I'll see what the dr has to say.

My sister got the results of her genetic testing from prometheus labs...and she was at the low risk category with what genes she had. So she wasn't sure what it all meant as she just got the results and was telling me them on the phone. I guess she has one of the genes that puts you at risk but it's not a huge risk? She's waiting on the results for her husband now...he has crohns disease...so it will be interesting.

[pricklypear1971]

So I've done some reading on ferritin levels. Hmmmm...still not sure what to think. I guess I'll see what the dr has to say.

My sister got the results of her genetic testing from prometheus labs...and she was at the low risk category with what genes she had. So she wasn't sure what it all meant as she just got the results and was telling me them on the phone. I guess she has one of the genes that puts you at risk but it's not a huge risk? She's waiting on the results for her husband now...he has crohns disease...so it will be interesting.

I'm a low risk genetically, for Celiac, if you are narrowing it down to dq2, dq8. I'm half dq2, half a translated 8...

But apparently, it doesn't matter if the SOB triggers.

Read the fine print...I bet it says other factors contribute to risk like other autoimmune diseases.

[carecare]

Thanks. Yeah, I'm not putting to much into the genetics part of it. Her results were DQ2.2(HLA DQA1*0201:DQB1*0202)...so on the low end. It's just interesting. I did a ton of reading last night trying to figure out what exactly it meant and I think I figured it out. And I agree....so true...it doesn't matter when the SOB triggers!

[Skylark]

That ferritin is kinda weird with everything else looking good. Makes me wonder if it was a lab error.

[carecare]

skylark...I was reading about ferritin levels and if I'm remembering correctly it stated that the other iron level readings can look normal because your body is taking iron from it's stores of iron which is the ferritin. It said it's why ferritin levels should be checked along with the other iron levels...because the regular iron tests won't necessarily show a problem with iron until the ferritin levels are really depleted.

I read that low ferritin levels can be the result of malabsorption due to having a intestinal disorder. I know something is up with me...so I'm not surprised. 8 more days until my colonoscopy and endoscopy...then I can start to feel better. I can't wait!!!!

[MaryJones2]

Your Ferritin is extremely low. I honestly can't believe 8 is the low normal in the range. Most responsible doctors like to see your ferritin above 80. You ferritin can be low while other parts of your iron panel reasonably normal - your hemogloblin can also be normal. Mine was 7 when I was first diagnosed with anemia and eventually celiac - in fact unexplained iron deficiency has been linked to celiac. They start doing blood transfusions around 5 because extremely low ferritin is considered a life threatening condition when it gets that low. I hope your doctor put you on a prescription grade supplement immediately and discussed iron shots as a backup option. If not you should ask about it or find a new doctor. you should also have your thyroid checked as anemia can also be related.

[Roda]

Your Ferritin is extremely low. I honestly can't believe 8 is the low normal in the range. Most responsible doctors like to see your ferritin above 80. You ferritin can be low while other parts of your iron panel reasonably normal - your hemogloblin can also be normal. Mine was 7 when I was first diagnosed with anemia and eventually celiac - in fact unexplained iron deficiency has been linked to celiac. They start doing blood transfusions around 5 because extremely low ferritin is considered a life threatening condition when it gets that low. I hope your doctor put you on a prescription grade supplement immediately and discussed iron shots as a backup option. If not you should ask about it or find a new doctor. you should also have your thyroid checked as anemia can also be related.

My ferritin level was 4 when it was finally checked! I had completely normal hemoglobin/hematocrit(H & H) by the time it was tested but my other iron tests were wonky. Noone ever once said I needed IV iron. It sure would have made a big difference. I was six months gluten free before I was able to tolerate oral iron. I was taking two Slow FE brand of tablets/day for months. Luckily I tolerated it well. I found out in Sept., and looking back to June, that my ferritin has been droping again. Normal H & H, but serum iron dropping and % saturation low. Not that critical, but I want to avoid it. I'm supplementing again.

[peeptoad]

I'm another with low ferritin, but otherwise normal iron. My ferritin was 11 at its lowest and I had definite deficiency symptoms (fatigue, short of breath, lightheaded, etc). Along with the gluten-free diet I had to go on iron supplements 3 times a day with vitamin C for it to really start rising.

[carecare]

Thanks. I will be happy if it's the reason for my fatigue and headaches...because hopefully if it's corrected those will improve.

I have not heard from my doctor yet...and wonder if they were just going to wait until I see them next monday for my endoscopy/colonoscopy? Wondering if I should call and inquire about it or just wait until monday and ask the dr about it before my procedure. Hmmm....

[Roda]

I was very symptomatic. Symptoms I couln't find a reason to were all pointing to the low ferritin in hindsite. I truely believe that my two bad episodes of tachycardia were related. I ended up in the ED two times with a heart rate over 180! Saw a cardiologist for a few months but got released when nothing could be found. I also had extreme fatique, shortness of breath, exercise intolerance and hair loss. On a side note my low vitamin D was contributing to the fatique also. I actually started supplementing with RX vitamin D months before I started the iron. About a month later I woke up and felt like a whole different person. So between the two they made me miserable.

[MaryJones2]

Noone ever once said I needed IV iron. It sure would have made a big difference.

Roda, I'm a little surprised they didn't mention it BUT that being said doctors do not like to do iron injections or IV iron because they can be dangerous. Generally they put you on a very high dose supplement and check your iron levels every week to see if it goes up. When mine was so low they were checking it twice a week for 2 months. I think it took 9 months for me to hit 40. I take SlowFe now - at the time I was diagnosed I don't think you could get a supplement with that much iron OTC so I had to take a prescription version.

[MaryJones2]

Here's a good link that explains the different tests and you can understand how some can be normal and others so grossly off: Open Original Shared Link

[saintmaybe]

Wow, such a useful discussion. Another piece of the puzzle. I can't figure out why I want to sleep 12 hours a day. I'm guessing 18 for ferritin is bad. And that was measured *before* my acute celiac really set in. Thanks guys!

[carecare]

I emailed my doctor as I noticed on the online portal that there was an option to do so. She replied within an hour which is awesome. I asked about checking B12 and Vitamin D. She said sure if I want to. Also said she'll do another round of bloodwork to check levels after my endoscopy and colonoscopy. So I think I'll just wait and have them check the other stuff then too. She requested I start on a good multivitamin, B12 complete, vitamin D and calcium. I know it's strange but I almost want to know my levels of everything before I start pumping in the vitamins....however, no big deal I'll start on the vitamins. It's something I haven't been very consistant with over the years. If it helps me start to feel better I'm on it.

Roda...interesting enough a year ago I went to my doctor because I had this weird throbbing sensation in my calf muscle. When I got there my heart rate was normal but going from the chair to the table it jumped to 125 and stayed there throughout the visit. She was concerned and ordered an EKG. All returned to normal though by the time the EKG was rolled in and I had been lieing on the table for 30 minutes. Occasionally my husband would tell me my heart was really fast after he'd come to bed and get next to me...and feel my heartbeat. Wondering if it has to do with the low ferritin. Seems my heart has been doing some weird things for the past year. Hmmm.....

[Roda]

janetw--The only person to take the low ferritin serious was my endocrinologist. She had prescribed me a RX of Cromagen and I could not tolerate it. It gave me horrible reflux, which I had to start with. This was all before I knew I had celiac. It was another 1.5 years before I was diagnosed.

carecare--I do believe it was the low ferritin causing me the SVT or at least exasperating it. I've always had a high normal heart rate and I am very sensitive to anything that stimulates the heart. I can't tolerate very much caffeine, I do not tolerate pseudoephedrine well at all and my PCP said never to take phentramine for any reason. I had issues with the SVT during both of my pregnancies. I've had two echocardiograms, multiple EKG's and wore a 24 holter monitor. The cardiologist had me on lopressor to slow the heart rate down when it all started in 2006. I couldn't take the side effects any longer so I quit it. I literally couldn't function. I have normal-low blood pressure and it bottomed it out. I had to be really careful getting up out of bed or off the couch. If I got up to fast my BP would drop and I would black out. I'm glad eventually I figured out what was wrong. I don't ever want to feel like that again or take lopressor!

[MaryJones2]

Funny, Chromagen was one of the few iron supplements that I could tolerate for a while but then they changed from a gel type coating to a hard pill and I couldn't tolerate them anymore...grrr.

[carecare]

So...just talked to the GI doctor this morning before my scope and asked him about the low ferritin level. He was not concerned...and just said well, you aren't anemic because your iron levels are good. Man...sometimes doctors just don't know stuff. He said they'll just watch it.

From everything I've read having a number that low can cause so many symptoms...and be caused by things that should be looked into. I will just supplement with good vitamins and now that my scopes are done with I can start a gluten free diet and see how things go.

[saintmaybe]

So...just talked to the GI doctor this morning before my scope and asked him about the low ferritin level. He was not concerned...and just said well, you aren't anemic because your iron levels are good. Man...sometimes doctors just don't know stuff. He said they'll just watch it.

From everything I've read having a number that low can cause so many symptoms...and be caused by things that should be looked into. I will just supplement with good vitamins and now that my scopes are done with I can start a gluten free diet and see how things go.

I figure just like you don't need a doctor's prescription for gluten free, you don't need a prescription for iron supplements. Everything I've read lately by *knowledgeable* specialists (read: hematologists) is that anything below 40 can cause serious side effects. 70is better, and 100 is ideal. Hair loss, extreme fatigue, dizziness, shortness of breath.

I'm pretty much done with doctors, unless I have something specific in mind that I want them to do. I've found they're pretty useless otherwise. Threatening them with firing seems to work pretty well- except, you know, tactfully. More like, "if you won't perform this test, I'll find a doctor who will. Later dude." All of my improvements have come about, because of proactive changes I made in my diet or research I undertook on my own. Doctors hinder the healing process, in my experience.