I just got my blood work results back. And I think my iron levels are low. I've heard that people with RLS sometimes need much higher than normal iron levels. I feel like I heard that Ferritin should be in the 100-300 range. Can anyone help me understand my numbers and what I should do?
Here are my numbers:
Iron = 94 ug/dl
Transferrin = 250 mg/dl
Saturation ratios = 26.9
Ferritin = 29.7 ng/ml
Yep serum ferritin is too low for RLS. You can buy ferrous bisglycinate OTC at most chemists and also online.
I take 25mg pill and a 45mg patch from PatchMD every other night and my levels have risen from 50 to 165 over the last 2 years and my RLS has definitely improved ( although that could also be due to the vegan diet I’ve followed for the last 4 months).
Doctor Buchfuhrer is an American who is highly regarded by many people in this forum.
I asked about ferritin levels because I was confused about why patients didn't just try boosting their ferritin to the maximum safe level of 500. 500 is the upper limit regarded as normal by one of the main pathology labs in Australia, I have seen other upper limits in other places. It would seem from his reply that aiming at a level of 350 is a good starting point. Note that it might take more than 12 weeks to feel the full effect so don't be disappointed if you wake up the following day and the RLS is still there. I think you can expect to need regular infusions in the future but I have seen it suggested that you can maintain the ferritin level with oral medication after the infusion. It is recommended that you take iron biglycinide every second day on an empty stomach and chew up a couple of Vitamin C tablets then swallow them with the iron. Perhaps someone knows how long after taking the iron you are allowed to eat a meal???
It should be mentioned that iron can be overdosed and permanently injure major organs. Make sure your doctor is monitoring your health while trying to boost iron levels.
Ferrocarboxymaltose is very unlikely to have an allergic reaction so it should be preferred if possible. An iron infusion overcomes the stomach problems of oral iron.
Doctor Buchfuhrer replied
We have learned a lot about iron absorption and iron therapy for RLS in the past few years.
When we quote the goals for iron therapy, it is based on only 2 studies that showed a benefit from oral iron therapy when the serum ferritin is brought above 50-75. That was the guidelines for those studies and they did not look to see if higher levels brought further relief of RLS symptoms. Furthermore, it is very hard to get serum ferritin levels much above 100 with oral iron therapy.
Now that we have been doing iron infusions for RLS for a few years, we have gained additional knowledge. We find that some patients need to get their ferritin levels above 200-300 in order to drive enough iron into the brain (the best way to find out how much iron gets into the brain would be a spinal tap but that is of course not something we would do very casually or routinely). However, we would recommend keeping the ferritin level no higher than about 350 in order to avoid issues with iron overload which could effect organs like the liver, kidneys and heart. Therefore, an iron infusion with a goal of getting your ferritin between 250-300 could be very helpful. You should also be aware that only certain iron formulations (INFeD and Injectafer) are beneficial for RLS patients.
(Graham's Note Injectafer® is (ferric carboxymaltose (FCM) injection; INFeD (Iron Dextran Injection USP) is a dark brown, slightly viscous sterile liquid complex of ferric hydroxide and dextran for intravenous or intramuscular use. Each mL contains the equivalent of 50 mg of elemental iron (as an iron dextran complex), approximately 0.9% sodium chloride, in water for injection.)
Excellent post, Graham. Many thanks - that’s very helpful information.
Thanks so much for all the info!
My GP is really clueless about RLS, but right now she's all I've got. should I ask her about doing Iron infusions, or should I go to a specialist like a neurologist?
If it were me I would go back to the GP and convince her firstly that raising the ferritin level offered you a reasonable chance of eliminating your symptoms and that , secondly, iron infusion was now the accepted method of raising the ferritin level to what might be required to do this.
In Australia my doctor can refer me to a clinic who will charge my health insurance so I pay nothing for an iron infusion. My understanding is that in the UK it is difficult for a doctor to order an iron infusion because its not on a list of accepted treatments for RLS
You could take along a couple of references that I have sent in a private message.
Graham
Iron levels -- borderline -- IV indicated?
Iron infusion rls
Iron article
Iron Level for RLS
Ferritin and Iron
