I have to thank the people here on this site who helped me get this done. From a suggestion by ViewsAskew, I wrote an email to Dr. Buchfuhrer and was astounded to actually get a reply from him last night. I had attached my latest iron levels and a brief history of my experience with RLS. Here is what he replied:
So I printed out both of the articles he sent and added a copy of this letter and my labs and presented the pile to my rheumatologist this morning. Unlike my PCP and the neurologist I saw last week, he didn't show any attitude about being given advice from another doctor via a lowly patient. He immediately read Dr. B's letter and then started right off arranging iron infusions for me. He took the suggestions from Dr. Mark Benkowski I had on me for what kind of iron to order (Injectafer) and then went through one of the papers to find out the amount usually ordered. It was astounding.First, let me say that your RLS treatment has not been optimal. It is a good thing that you had side effects from the Requip or otherwise you would very likely have developed augmentation (a worsening of RLS from taking a dopamine drug) which occurs at a rate of 7-8%/year of people who take a dopamine drug (see attached augmentation article). With proper treatment, almost all RLS patients should get excellent relief from their very disruptive RLS symptoms.
The issue with iron and ferritin levels is that the normal lower limits (below which is considered iron deficiency) varies considerably from lab to lab. Your lab chooses 15 as the lower limit for iron saturation (this is more accurate than total iron as your body has produced more iron binding protein to carry the decreased iron stores). Many other labs use lower limits for the iron saturation as high as 20% or more. Your value at 18% is considered low (see attached Iron for RLS consensus article which recommends iron infusions for patients under 20%).
In addition, the consensus paper also recommends iron infusions for RLS patients with serum ferritin levels under 100 (your was 30).
Oral iron rarely helps as absorption decreases as ferritin levels approach 50 and we only recommend oral iron once a day due to decreased absorption due to negative feedback from hepcidin (a hormone that goes up when increased oral iron is taken).
You might be able to convince your doctors that iron deficiency is the correct diagnosis based on the consensus paper attached but it is a lot to read and most doctors are not that interested in learning more about RLS (unfortunately).
When he finished, he turned to me and said he hoped they would help. I told him, yes, there is a chance they might not but I had to start with them to see if they would. I told him that I didn't know why it was so hard to get my other doctors to try something so simple. Why did it have to be such a fight with them?
I'm not positive that insurance will pay for them, but while I cared a lot about that 2 weeks ago, right now I'm willing to pay anything just to sleep better. I did suggest that they try ordering it for "iron deficiency" rather than restless legs, and they were okay with that. The doctor is going through an infusion center so we don't have to get a hematologist involved.
So hip hip hooray and thank you to all who helped. I will let you know how it goes.