Ferritin levels and IV iron

[sarahpatto]

Hi Jackolette,
Frustration is the word!! Okay night, bad night, miraculous good night - it's inexplicable. I just painstakingly made a chart of my various iron levels over the past year including the Ferritin which has stayed high after my iron injections last December. Hemocrit remains low so they're saying I'm anemic but the hematologist doesn't seem knowledgeable or interested in learning more about the correlation between anemia and RLS. Onward!

[Rebecca12*]

Does anyone have experience with Venofer?

[Trophyman]

My hematologist has also prescribed 3 infusions of Venofer. I too am wondering if this is the correct iron formulation to use.

[Rustsmith]

Here is a publication that describes the types of iron used for infusions. Venofer is iron sucrose. Dr Earley at Johns Hopkins has done the largest part of the evaluation of IV iron treatments for RLS and he prefers iron carboxymaltose over the simpler iron sugars like sucrose.

I don't remember if it is discussed in this publication or not, but apparently the simple sugars are adsorbed quickly and then discarded quickly. They are the preferred treatment for anemia. Whereas, Dr Earley says that the more complex sugars take a bit longer for the body to process and therefore more ends up in the brain, which is where we need them.

Perhaps this publication would be useful in convincing your doctor to switch?

https://www.sciencedirect.com/science/a ... 5717315599

[Brynmr]

I am now seeing a sleep specialist in Portland, OR who had their residency at the Stanford Sleep Center in CA. In our first hour long consult, she was very knowledgeable. However, I had a complete iron panel prior to this appointment which also tests ferritin levels of course. My ferritin level was 70 and when I asked about IV iron infusions, she said that 70 was adequate, that to get it over 100 would not add significantly to abatement of RLS symptoms and that it is not effective for a percentage of people. She stressed that it was very expensive and that insurance would not pay as I was not medically anemic. She acknowledged that at a European conference of sleep specialist she attended, it was a.ways the first line of treatment in Europe—of course. She recommended that I continue taking oral iron.

Frustrated because whether it is Dr. Early or the other Care Center doctors, so many feel that ferritin has to be above 100 for RLS patients. Have any of you experienced this dead end and what course of action did you take?

My ferritin level is low 40s. I asked my neurologist about an iron infusion and he said the patients he knew who had received an infusion got little to no benefit, so he did not recommend the infusion. I won't be taking it. He did recommend 65mg of iron daily - which I have been taking. Know too that he himself has RLS.

[redshoes]

Blood ferritin level is important but is not the only blood iron number that matters—the blood's “percentage transferrin saturation” is also important. A full iron assessment should include 4 metrics: serum iron, ferritin, total iron-binding capacity, and percentage transferrin saturation. (Silber et al, “The Management of Restless Legs Syndrome: An Updated Algorithm” (Mayo Clinic, 2021).)

I have severe lifelong RLS, and have augmented on Requip and pramipexole. Had an iron transfusion 5 years ago, and it helped immeasurably but the effects eventually wore off.

A few weeks ago, my neurologist referred me to my hematologist, who initially said I didn’t need IV iron as I wasn’t low in iron. All my numbers were within normal limits. Ferritin was 93.

I then showed my hematologist the Mayo Clinic article and the passage that reads, “According to a consensus of RLS experts, the base requirement for any use of IV iron therapy in RLS is that the serum ferritin concentration should be less than 100 micrograms/liter … AND transferrin saturation less than 45%.” (My caps.)

My transferrin saturation number was 37%, therefore, less than 45%. My hematologist looked at the article and ordered IV iron.

You don’t need to know what transferrin saturation is, or what it means—just that according to these RLS experts, publishing for the Mayo Foundation for Medical Education and Research, IV iron is first-line treatment for moderate to severe persistent or refractory RLS, and that ferritin level and percentage transferrin saturation should both be considered.

Grateful to my neurologist and hematologist. Grateful as well to Holland St John, who posted often here about IV iron for RLS, and advised us to give our health care providers the 2018 article by Allen et al, re iron treatment for RLS. Holland, and this entire forum, have been incredibly helpful. Thank you.