Restless Legs Syndrome (RLS) Discussion Board

I was talking to my GP about IV Iron yesterday. I showed her the Consensus Clinical Practice Guidelines for Iron Treatment and she was somewhat receptive to the idea. She's going to talk to the haematologist and have a full iron panel run on me for my next visit.

My question is what kind of oral iron should I be taking. Following what I have read on this forum I have been taking 25 mg Iron Ferrous Bisglycinate Chelate with 500 mg vitamin C and 1000 mg L-Methylfolate. In the Practice Guidelines they talk about 325 mg oral iron as Ferrous Sulphate twice a day.

So I guess my question is should I change the Oral Iron I'm taking?

Probably best to take the recommended ferrous sulfate otherwise, when it doesn't work, the doc may say you didn't give the oral iron a proper trial.

My GP talked to the haematologist in my insurance group who will only treat anaemia with IV Iron. I was prepared for this after reading other's experiences with haematologists. I guess I'll change to Ferrous Sulphate with vitamin C and increase the dose to that specified in the Consensus Clinical Practice Guidelines. I see my neurologist next but don't expect anything new from him but I'll run the IV Iron past him. Maybe he can be more helpful in finding a haematologist that has an open mind.

Stainless wrote:My GP talked to the haematologist in my insurance group who will only treat anaemia with IV Iron. I was prepared for this after reading other's experiences with haematologists. I guess I'll change to Ferrous Sulphate with vitamin C and increase the dose to that specified in the Consensus Clinical Practice Guidelines. I see my neurologist next but don't expect anything new from him but I'll run the IV Iron past him. Maybe he can be more helpful in finding a haematologist that has an open mind.

I have no idea if Dr. B would do it...but when I saw the hematologist for my last infusion, he really didn't "hear" me. I asked him if he would talk to my Dr. and he said yes. In the visit, I pulled out my phone and called Dr. B's office. His staff got him on the phone and he explained it Dr. to Dr.

I had the infusion the next week.

I just saw a NEW hematologist (I moved). We chatted about it and he listened to my points. At one point he said, "Are you in the medical field?"

In the end, he ordered new blood work (last one was in December and I had an infection at the time as well as some autoimmune stuff going on). He also said he would see if my insurance would cover it. At least I felt he was considering it. But, when I go back, if he says no? I will again pull out my phone and call Dr. B, lol.

Ann: Has the intravenous iron infusion worked for you? Has it relieved your RLS symptoms?

redshoes wrote:Ann: Has the intravenous iron infusion worked for you? Has it relieved your RLS symptoms?

It reduces the meds I need to take, does not eliminate it. I get about a 45-55% reduction in meds. Given that I take what is a LOT of methadone, relatively speaking, that is a very good thing.

redshoes wrote:Ann: Has the intravenous iron infusion worked for you? Has it relieved your RLS symptoms?

Welcome redshoes: RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood tests doctors usually do (ferritin test) to check for low iron only check for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://www.sciencedirect.com/science/a ... via%3Dihub

In relation to oral iron, I have tried various supplements but never managed to get my serum ferritin to 100. In the last few months I started eating liver every second day. At first it was a process of attrition but I am getting used to it now and have a nice recipe. Chicken liver is the least unpalatable. I am pretty sure that my rls is less severe when I am eating it. If I stop eating it for more than a few days, I think my rls definitely worsens. It is subjective at this stage as I haven't had my serum ferritin checked since starting it but I feel that my symptoms respond better than they do to iron supplements.