Iron Panel

[TimG]

Here are the latest Iron panel results. I've been on daily oral Iron therapy (65mg) for a number of years and have taken 0.125 pramipexole tablet nightly for 15 years

Total Iron 117 mg
Total Iron Binding Capacity 301
% Saturation 39
Ferritin 171 ng

My ferritin was 19 ng before starting Iron therapy about 5 years ago

Any comments?

[Rustsmith]

Those numbers look fairly good for an RLS patient on oral iron. The target is a ferritin level over 75 to 100. However, some individuals need even more. But also, some of us do not benefit from iron therapy. I was on oral iron for a number of years and was able to get my ferritin to over 650. Unfortunately, that did not help my RLS.

And in case someone raises the point, my doctor said that a ferritin value that high was still acceptable so long as I didn't show any signs of jaundice. My PCP later ran a genetics test to confirm that I did not have the hemachromatosis gene that would make high ferritin dangerous and I did not have it.

[Stainless]

I took oral iron for over a year with vitamin C. I never felt it improved anything, upset my stomach and I felt my RLS improved when I quit. At the time I had Iron numbers like you posted before starting oral iron and did not appreciably change while I used it.

A year and a half after radiation and chemo my iron levels crashed by a factor of 10 until my Ferritin was 17. I had an iron infusion finally and my oncologist / haematologist and I expected to see some RLS improvement. My numbers went back to normal but no RLS relief. In fact the pain is worse than ever. Next month we do another blood draw and PET Scan. It will be interesting to see if my levels are still up. I had many blood draws the first year after treatment and my iron levels stayed normal. Strange.

[ViewsAskew]

I took oral iron for over a year with vitamin C. I never felt it improved anything, upset my stomach and I felt my RLS improved when I quit. At the time I had Iron numbers like you posted before starting oral iron and did not appreciably change while I used it.

A year and a half after radiation and chemo my iron levels crashed by a factor of 10 until my Ferritin was 17. I had an iron infusion finally and my oncologist / haematologist and I expected to see some RLS improvement. My numbers went back to normal but no RLS relief. In fact the pain is worse than ever. Next month we do another blood draw and PET Scan. It will be interesting to see if my levels are still up. I had many blood draws the first year after treatment and my iron levels stayed normal. Strange.

Some doctors think I am making this up, but my ferritin needs to be at LEAST 200 to have any impact and is best when over 300. Getting the iron to the brain is the hard part and even if we have high ferritin, there are no guarantees that it will get there, sadly.

[Rustsmith]

I have said this before but will repeat it again. When I was first diagnosed with RLS, my ferritin was 42. I started taking iron and vit. C twice a day for the next few years. Once mid-morning and once mid-afternoon. When my ferritin got to be 300 (this was all before iron infusions), my doctor suggested I drop back to once/day.

I kept that up for several more years until it get to 650. My neurologist wasn't concerned about that but my GP was, so she ran a hemachromatosis gene test which came back negative. At that point, my GP suggested that I stop taking iron for a while. The next year it was 400. I changed doctors during the break and didn't get it checked again for a while and when it was tested last year it was about 100, so I started taking it each night. I get it testing in about six weeks.

While all this was going on, I followed some of the iron blood-brain barrier research that is still going on. The transmission of iron across into the brain is a lot more complex that even the researchers had suspected. One of the genes that has been tied to RLS is thought to be involved with fabricating the protein that carries iron across cell walls. Maybe there is a genetic component, maybe not. Apparently iron doesn't help me at all and maybe it only helps Ann just a bit. It will probably be another decade or so until they know and I probably won't care about it by then.

[ViewsAskew]

I have said this before but will repeat it again. When I was first diagnosed with RLS, my ferritin was 42. I started taking iron and vit. C twice a day for the next few years. Once mid-morning and once mid-afternoon. When my ferritin got to be 300 (this was all before iron infusions), my doctor suggested I drop back to once/day.

I kept that up for several more years until it get to 650. My neurologist wasn't concerned about that but my GP was, so she ran a hemachromatosis gene test which came back negative. At that point, my GP suggested that I stop taking iron for a while. The next year it was 400. I changed doctors during the break and didn't get it checked again for a while and when it was tested last year it was about 100, so I started taking it each night. I get it testing in about six weeks.

While all this was going on, I followed some of the iron blood-brain barrier research that is still going on. The transmission of iron across into the brain is a lot more complex that even the researchers had suspected. One of the genes that has been tied to RLS is thought to be involved with fabricating the protein that carries iron across cell walls. Maybe there is a genetic component, maybe not. Apparently iron doesn't help me at all and maybe it only helps Ann just a bit. It will probably be another decade or so until they know and I probably won't care about it by then.

Exactly!