Raising Ferritin Levels

[jennywotherspoon]

My DD's blood tests have just come back. She is low in Ferritin which I understand is the protein that binds to iron in the body. Can anyone offer some advice on raising levels? I am pretty sure supplementation is not wise as pseudomonas thrives in an iron rich environment.

 

[RayRDT]

I had IV Iron Therapy. Way faster than the pills. I didn't know that Pseudos thrive in Iron ... Can you give more info pls ?

 

[Gammaw]

Same here. I never heard of iron feeding pseudemonas. Where did that come from?

 

[DrRoe]

According to research Pseudomonas aeruginosa needs iron to establish and maintain a biofilm in CF lungs and it may also inhibit the effect of antibiotics -here's a link to an abstract you might like to read ... http://www.ncbi.nlm.nih.gov/pubmed/24436170

 

[jennywotherspoon]

Thank you Dr Roe. My information in this regard came directly from my daughter's treating specialist. We don't want to fix the ferritin deficiency at the risk of encouraging pseudomonas, hence my search for ways to lift Ferritin levels via diet.

 

[Gammaw]

Got me again. Thank you for this forum. What an education.
My next round of confusion - If raising ferritin levels with supplementation would optimize the environment for pseudemonas growth, wouldn't fixing the ferritin deficiency with diet also risk encouraging colonization? What's the difference in methods?
Thank you DrRoe. Frankly I'm still trying to digest the abstract you linked. My brother is a medical whiz, so I may have to forward it to him for translation! But I had no idea there was a connection. Wow. At the risk of sounding naive, why are we stuffing these children with all kinds of multivitamins?

 

[MotherofCFBoy11yrs]

I've read that there are high concentrations of iron in the lungs of people with CF who have a PA infection. The worse the infection, the more iron. However, there was a small study recently showing that iron supplementation is safe : Iron supplementation does not worsen respiratory health or alter the sputum microbiome in cystic fibrosis (http://www.sciencedirect.com/science/article/pii/S156919931300194X). So maybe iron intake is not related to lung health. Anemia is common in CF.

People with CF tend to have very low vitamin levels, at least partly caused by malabsorption. Vitamins are very important for health, especially vitamin D. I give my son 100 ug (4000 IU) of vitamin D plus 4 g vitamin K daily in addition to Aquadeks.

 

[jennywotherspoon]

Yes I think fat soluble vitamin supplement is a definite yes as far as supplementation goes. I agree with Gammaw that we shouldn't just randomly throw every supplement that catches our eye at our kids. I am sure this can do more harm than good even though it makes us feel better because we are doing something. Iron supplements are definitely not going to be included.

I also understand that taking a calcium supplement at the same time as eating read meat will reduce the absorption of iron. I think we have to be really careful with supplements and research very thoroughly about when to give, especially around medications. Dr. advised trying to increase ferritin with diet is the safe way but will ask what the difference is with supplementing . We eat red meat, dark leafy greans and beans often. I am going to add orange juice or a Vitamin C supplement to help increase absorption.

Any other ideas really welcome.

 

[Gammaw]

Yes, I really didn't mean to suggest anyone with CF should avoid supplementation with A, D, E, or K. They are fat soluble and since fat absorption is a primary issue, they are absolutely necessary. Deficiencies in these vitamins can be ugly. I just found it interesting to hear a doc tell someone NOT to supplement in the face of any deficiency. It will be interesting to hear what the doc says is the difference in methods.....please do post the response!

To MotherOfCFBoy - I see you are from Finland. Is it common there for CFers to be given prophylactic TOBI to avoid pseudemonas? Based on your signature, it certainly sounds like it might have helped your son.

 

[MotherofCFBoy11yrs]

Hi Gammaw, yes the Tobi prophylaxis has made it possible for us to lead a perfectly normal life, practically no CF complications. I think the result is pretty much what people are hoping the Vertex drugs will achieve. My son never coughs, in the CT scans his lungs are absolutely clear, he has never missed a day of school because of CF, his weight is normal, FEV1 95%.

There is only one center I know of that uses this treatment regime, in Brussels. Their results are great, I've posted a link about them some time ago here. It's not a typical treatment here in Finland nor in Australia where we lived until my son was nine.

A year before my son was born, our firstborn had died as a result of a head injury, or actually because of a series of medical errors in the treatment of the injury which was not major. So by the time I found out about my son's CF, I had learnt a lot about medicine and doctors - most importantly that not all medical care is equal. Also, in an effort to find out what actually had lead to the death of our firstborn (the hospital was reluctant to clear things up), I had emailed a number of people in the top university hospitals in the US and got some very good information. Encouraged by this, after the CF diagnosis I again emailed a number of people in the US and got in touch with Jeff Wine who is the director of the CF laboratory at Stanford University. It was on his recommendation we started the preventative treatment. He gave a plenary about this approach in the 2008 North American CF Conference, I can send you a link if you are interested.

Doing things differently from the standard CF care has required a huge amount of determination, and dealing with the clinicians has at times been hard, but it definitely has been worth it.