What are possible causes of elevated TIBC and Iron with Low Ferritin

[girlygirl333]

I've had ongoing problems with muscle pain/weakness/stiffness. Even minimal repetitive activity (ie: lifting arms over head and bringing them back down 2-3 times, or walking up my stairs, typing, etc) will cause effected muscles to feel like they are loaded down with lactic acid. I've had other things going related to a possible CSF leak but at this point we've decided that there might be two separate issues. In addition to the pain/weakness/stiffness, I vomit clear foam for no apparent reason. Sometimes accompanied by nausea other times not. I also have a problem of my lungs filling up with what can best be described as clear air-bubble filled gel sacs. When this happens it sounds like I'm breathing through a series of waterlogged filters. Also my lungs will fill like they stop working momentarily and I have these strings of mucous that come up, lately they are filled with air bubbles also. I have a severe symptom flare up every couple of days to every couple of weeks that is so severe that anyone around me thinks I may die before this gets figured out. It was strongly suspected that I had an autoimmune disorder but all tests have been negative.

There are other symptoms but my main question is what would cause this combination, besides having taken iron supplements or having eaten a high protein diet prior to the test? (I fasted for 12 hours prior and do not eat a high iron diet)

Test                    My result      Standard Range

TIBC                       514             228-428 ug/dL

Iron                         191              35-160 ug/dL

Total Iron
Binding Capacity,      323             92-365 ug/dL
Unsaturated

Transferrin Sat%          37              15-55 %

Ferritin                        12               22-291 ng/mL

My vit D is low, it was 13 a year ago I had it up to 42 then it went back down to 17. Not sure why. My CRP has been elevated, should be < .5 but is between .6 and 1.1 (the 1.1 was taken during a flare up of my symptoms) My neut have been slightly low and Lymp and Eos slightly high for the last year and a half. I've been tested for ANA and other specific antibodies everything comes back negative. One exception would be a test for HLA-B27 typing, it came back "not determined". My doctor literally just picked some random tests stating "Well I'm just going to throw a bunch of different things in there and see if we get a hit". As far as labs, we've R/O mono, lyme, sjogren's (though due to symptoms I was diagnosed with sicca syndrome), lupus, RA, etc.  

Two other notes, since I don't know what is important...I can not drink water without getting sick to my stomach now, this did not happen prior to onset of symptoms. At times my urine smells like hot sweet buttered popcorn.

[doctornee medical]

Hi
Thanks for writing to the forum!
Elevated Total Iron Binding Capacity will automatically result in low free iron in the blood. Hence if with elevated TIBC, iron too is high, it could be due to iron supplements you took.
Another possibility is hereditary hemochromatosis. “The total iron binding capacity test measures how well your blood can transport iron, and the serum ferritin test shows the level of iron in the liver. If either of these tests shows higher than normal levels of iron in the body, doctors can order a special blood test to detect the HFE mutation, which will confirm the diagnosis.” Refer: http://digestive.niddk.nih.gov/ddiseases/pubs/hemochromatosis/#diagnosis

“Hemochromatosis can happen because of certain medical conditions, such as thalassemia or sideroblastic anemia.” Refer: http://digestive-system.emedtv.com/hemochromatosis/hemochromatosis.html

Your symptoms of muscle pain/weakness/stiffness can also be explained by hemochromatosis.
It is difficult to comment beyond this at this stage. Do consult a hematology specialist regarding this. Please let me know if there is any thing else and do keep me posted. Take care!

[girlygirl333]

Thanks for this information *smile*  I do not take iron supplements so I think these results are definitely something I should look into further.

[girlygirl333]

I can not figure out a way to edit my last post so I'm writing a quick add-on.

When I looked up info on hemochromatosis it says that in treatment the goal is to bring the ferritin levels down..etc. While my TIBC is high and my Iron is high, my ferritin is low. Can you have hemochromatosis and low ferritin?