Ferritin- how low , ESR high, have you guys seen this?

[sptcmom]

DS 8 got his bloodwork back yesterday. Ferritin is very low at only 7. I'm curious as to why does this happen. I asked Dr K back in May and he said it happens with PANDAS, doesn't know why exactly. I couldn't find a link. Here's the only connections I found

DS has a high sed rate at 29. It used to be 61 for a year till May 2010 when it came down to 22 and now back up. We are 11 weeks post IVIG. One would think the inflammation would be down altogether.I am frustrated to think there is still such a high level of inflammation in DS's body most probably the brain.

The mystery is DS's CRP (C reactive protein) has always been normal and this is a more solid indicator of inflammation. Go figure!

One explanation DS's hematologist gave us was that both Ferritin and ESR and acute phase reactants and can vary together one up the other down.Also if the immune complexes are high they are heavy and the erythrocytes fall faster ("sedimentation" ) and hence the high sed rate.

I am still waiting on DS's immune complexes results.

Maybe I should try an anti-inflammatory diet. No corn, etc. I have search this forum.

I am supplementing with iron but DR K says to keep it short term.

Has anyone supplemented with iron long-term and have you found an increased susceptibility to infections?

Thanks

Jodie

[P_Mom]

How is his iron saturation????

[mom md]

My son's ferritin was low (24) and dropped to 20 after a year of supplememntation. His small bowel biopsy showed mild inflammation (despite steroids and two rounds of IVIG). There may be some connection here with gluten sensitivity. I don"t know. His iron saturation levels were normal.

[P_Mom]

Ferritin is iron stores....I was told that if the iron saturation is normal...the ferritin is not too much of a worry.......my ferritin is low, always has been... but my doc told me NOT to supplement with iron because my saturation was high. Iron can damage organs if given too much.

[amy s]

Be very careful with supplementation with iron long term. P. Mom is right, it is toxic to the organs if too much is in the body.

 

Hemochromatosis is one of the most common genetic illnesses and it is usually not found out until mid life, causing organ failure due to iron overload. The only real

way to really get iron out of the system is by bleeding. The treatment for hemachromatosis is to donate blood constantly for life! Menses is another way to remove iron from the body. That is why most women are not found out to have hemochromotosis until after menopause.

 

Sorry,I don't know how to raise Ferritin levels.

[KeithandElizabeth]

Hi Jodie:

 

Low vitamin and low Ferritin and be a result of a chronic infection. My son had low Ferritin as well and we did do the iron supplementation for a while. Our current doctor is treating my son for all of the microbes (lyme, bartonella, babesia and mycoplasma) and said that once we deal with ridding the body of the infections, then the body will work more efficiently and we should see an increase in the Ferritin and Vitamin D levels. I will let you know when we draw blood next.

 

Elizabeth

[sptcmom]

Thank you so much guys. The wisdom you guys give is priceless. I don't know his iron saturation. I will do that two weeks later when we draw again for further tests.

Is that the same as transferrin saturation? That was normal in early May and total iron and iron binding cap was also normal back in May. Even though Ferritin was low and falling.

I will run the iron panel again.

Why does iron supplement help his leg aches and pains overnight though? Literally. I started yesterday afternoon and this morning his left leg was 80% better. If his body had enough iron why would it respond like it was starving?

I have to investigate this Ferritin business in depth. The hematologist is on vacation this week. I will ask her next week.

I agree with the infection bit though. I am waiting on the igenex results but I do suspect Lyme coinfections. DS does indeed have VERY low vit D as well.- Jodie

[Suzan]

I have issues with low ferritin as well. When my ferritin was around 20, I could hardly walk up stiars I had no energy. Taking iron and increasing my ferritin levels helped so much. I don't know much about taking too much though. So far, I get my iron and ferritin checked every 4-6 months when I get my thyroid checked. But I have hashimoto's and I think it's related. My vitamin D is low too.

 

I've had my girls ferritin checked but so far, they have very good numbers. I am interested in hearing what you learn about it after you talk to the doc.

 

Susan

[Joan Pandas Mom]

My son had low Ferretin too. Dr. K. told me to be careful with supplements too. I'm going to try to get it through diet more and I bought a cast iron pan.

[Lori Ann]

My son's ferritin is low too. It was 11 and now after three months of supplementation, it is at 36. Our doctor says that it should be above 100. Below 50, neurological problems can occur such as restless leg syndrome, mood changes (as iron is important to the production and function of certain neurotransmitters) and sleep problems. Our doctor still thinks that low iron is the root of all our problems, but I disagree. I think that PANDAS might be linked to his low iron. If he had low iron before the PANDAS, why did we not see any of the signs? He slept well, did very well in school and had no mood problems before his bout with strep late last fall. He was recently diagnosed with seizure disorder too after an ambulatory EEG. I am convinced that the infection is the cause of the seizures as well. I am looking into the relationships, but there is very little information out there. Make sure that if you are supplementing that your child gets plenty of vitamin C, this helps the body absorb the iron more efficiently (keeps the iron from oxidizing too quickly). Also, supplement throughout the day, as the body can only absorb so much at a time.

[purple66p]

Is this a blood test different from a CBC? My son's hemoglobin, hematocrit, and RBC are all low. I've been watching them drop steadily over the last 4-5 years, but this last test is the first where it dropped below the normal range. When I brought it up to doc last week, he indicated that it should go up as his immune system recovers and didn't recommend iron supplementation at this time.

[Lori Ann]

Found out something interesting today about iron. Strep bacteria actually sequester iron from the host in order to reproduce. " Group A Strep produces extracellular protease that releases iron from ferritin". (Journal of infection and immunity) My son never had iron problems (or even any symptoms of iron deficiency) before this. I am wondering if his low iron levels are due to the infection instead of the other way around which is what I originally thought. I also wonder if I am doing more harm than good by supplementing his iron intake. Some studies show that increasing iron availability to the strep will allow it to thrive. Since we increased his iron and stopped abx, I have seen an increase in rages and negative behavior. I know we need to get his iron levels up, but I wonder if they would not increase on their own if we completely eliminate the strep?