You have a great deal of knowledge about iron infusions. Thanks for sharing all your information! We are so badly in need of caring doctors like yourself that work hard to keep updated on the latest.
I’m in Australia and we have a public health system and even here they’re super reluctant to give us iron infusions, in fact it was the only useful info I got from the neurologist.
Suffering RLS for years, and taking fairly addictive medication, that occasionally had to be topped up , after waiting your video I made appointment for iron blood test. Hopefully will explain and prevent, or at least, slow down me running marathons every night, to at least short distance run , and a good night sleep, that I can’t even remember ever having. Thank you.
First, I want to say, thank you! You have saved my life. I have been suffering from RLS for 25 years. I saw your video on buprenorphine, worked through a ton of hurdles to get it, and it has made a huge difference. I was taking 22 mg of Ropinirole daily, now I’m down to 8mg. Now I’m working to get IV iron. This is more difficult than the buprenorphine. My question is, how often, say in a year, do you have to get the IV iron treatment.
How often one should get iron is a complex question. General consensus is to repeat the infusion if the ferritin level < 100 ng/mL or the transferrin saturation < 20%. However, for each individual, if the iron infusion is effective, there may be a unique level for that person below which symptoms start to get worse and that would be the point to repeat it. It may not be exactly ferritin 75 or 100 or 125 ng/mL for a specific person.
Andy, thank you for explaining this process in such a down to earth and easy to understand concept. I am benefiting as a patient from your knowledge and insights. This will enable me to understand and follow steps in treatment. 👏👏👏
Outstanding video! Please keep up the great work helping us Doctor B:) What kind of doctors know the most about treating RLS? It's not taken seriously from my GP or others:( Klonipin is the only thing that stops it in its tracks, but now the drs don't want to prescribe it.
RLS is a bit of an orphan condition. It is a neurological disorder but neurologists are generally not familiar with treating the condition so it generally falls under sleep medicine. Finding a neurologist that is specializes in sleep medicine is probably the best bet. The RLS Foundation also has a database of clinicians who report that they treat RLS: www.rls.org/treatment/find-a-healthcare-provider
@@andyberkowskimd Dr. Berkowski, sadly, I went to a sleep disorder neurologist; he said not only that they were not set up to do infusions, but that he would not order one for me.
After 15 years of R.L. caused by a surgery, I have new info. from Restless Leg Syndrome Foundation. After one year of oral iron, TSAT test went up only one point. My level is 23 right now. Looking for doctor to do iron infusion. I have been through 4 doctors now. Dr. Berkowski, are you seeing patients and if so can one visit you and see if a iron infusion can be done?
If my serum ferritin is below 75 what is the best iron supplement to help build it back up if an iron infusion is not an option. Would Feramax be a good supplement?
Unfortunately, there are only high quality studies of ferrous sulfate, but it is likely that many types of iron work. From my experience only, I tend to recommend ferrous bisglycinate or heme iron, which seem better tolerated and better absorbed that those with iron bound to other chemicals. I cannot provide research to support this however.
My Dr put me on elemental iron, so far I don't feel any different, actually I feel worse. I'm so weak if I squat down I don't have the strength to get back up. I feel so weak and tired all day everyday, like on the verge of passing out. I can't take it anymore.
With iron supplements, there is often poor absorption into the body by the GI system. Fortunately, testing iron levels again after two months of supplementation can provide objective data as whether the supplement is moving the needle. If not, iron infusion is indicated and much more powerful. th-cam.com/video/oeYSHJkktQQ/w-d-xo.html
Dr. Berkowski, I have had 4 blood tests in 2023 to check my ferritin levels. The ferritin levels ranged from 48 to 103 with a saturation percent between 21% and 32%. 3 of the tests had ferritin below 100. 2 of the tests were below 75 and one test was below 50. Do these numbers suggest that i would potentially benefit from an iron infusion? I would describe my RLS symptoms as severe as they occur every night. Thank you, I very much appreciate your response.
Unfortunately, there are no studies that show optimal cutoffs for ferritin, and moreover, it does not exactly correlate with iron levels in the brain and may vary among individuals. Many people cannot absorb iron supplements to get over ferritin 75 ng/mL, but iron infusions can increase iron well above this. Some people who have ferritin levels from 75-125 or as high as 150 actually do benefit from getting the levels higher through infusion, but we do not yet know how to identify who will benefit other than through trial and error.
My Ferritin level was 37 on lab work, my serum level is normal. Should I get an infusion? Dr said try taking 2 irons pills a day. My hemoglobin was 16.2 hematocrit was 47.3, both on the high end.
Ferritin < 40 ng/mL, sometimes < 30 ng/mL, is the cutoff for "iron deficiency" regardless of what the iron studies show. Iron levels are a spectrum so a cutoff is somewhat arbitrary but these levels reflect low iron stores in the bone marrow, which is the gold standard for determining iron deficiency. As I discuss here, both the ferritin and the transferrin saturation% can be falsely high for a variety of reasons so if one is low, iron is most likely low, even when the other is normal or high. th-cam.com/video/XoT3Wa96MvU/w-d-xo.html Of course, ferritin of 30-40 ng/mL, whether iron deficiency is present or not, is generally far too low for those with RLS, where the goal is at least 75-100 ng/mL but varies substantially among individuals. This video discusses ways of supplementing iron for RLS: th-cam.com/video/TB2Udcpdv48/w-d-xo.html
That's why certain patients have to go look look for someone else that do iron infusions and they can pay on their own they don't have to go through the insurance to pay anything if they go look on their own they can pay their own cash lol😂
With the 2024 AASM Guidelines recommending multiple types of iron infusion, hopefully third-party payers will be encouraged to cover the cost for those paying for insurance coverage and this will progressively be less of an issue.
You have a great deal of knowledge about iron infusions. Thanks for sharing all your information! We are so badly in need of caring doctors like yourself that work hard to keep updated on the latest.
I’m in Australia and we have a public health system and even here they’re super reluctant to give us iron infusions, in fact it was the only useful info I got from the neurologist.
Suffering RLS for years, and taking fairly addictive medication, that occasionally had to be topped up , after waiting your video I made appointment for iron blood test. Hopefully will explain and prevent, or at least, slow down me running marathons every night, to at least short distance run , and a good night sleep, that I can’t even remember ever having. Thank you.
Sorry to hear about your condition and hope that you can get appropriate treatment soon
Thank you. Very professional and informative!
Thanks!
First, I want to say, thank you! You have saved my life. I have been suffering from RLS for 25 years. I saw your video on buprenorphine, worked through a ton of hurdles to get it, and it has made a huge difference. I was taking 22 mg of Ropinirole daily, now I’m down to 8mg. Now I’m working to get IV iron. This is more difficult than the buprenorphine. My question is, how often, say in a year, do you have to get the IV iron treatment.
How often one should get iron is a complex question. General consensus is to repeat the infusion if the ferritin level < 100 ng/mL or the transferrin saturation < 20%. However, for each individual, if the iron infusion is effective, there may be a unique level for that person below which symptoms start to get worse and that would be the point to repeat it. It may not be exactly ferritin 75 or 100 or 125 ng/mL for a specific person.
Andy, thank you for explaining this process in such a down to earth and easy to understand concept. I am benefiting as a patient from your knowledge and insights.
This will enable me to understand and follow steps in treatment. 👏👏👏
Happy to help
Outstanding video! Please keep up the great work helping us Doctor B:) What kind of doctors know the most about treating RLS? It's not taken seriously from my GP or others:( Klonipin is the only thing that stops it in its tracks, but now the drs don't want to prescribe it.
RLS is a bit of an orphan condition. It is a neurological disorder but neurologists are generally not familiar with treating the condition so it generally falls under sleep medicine. Finding a neurologist that is specializes in sleep medicine is probably the best bet. The RLS Foundation also has a database of clinicians who report that they treat RLS:
www.rls.org/treatment/find-a-healthcare-provider
@@andyberkowskimd Dr. Berkowski, sadly, I went to a sleep disorder neurologist; he said not only that they were not set up to do infusions, but that he would not order one for me.
After 15 years of R.L. caused by a surgery, I have new info. from Restless Leg Syndrome Foundation. After one year of oral iron, TSAT test went up only one point. My level is 23 right now. Looking for doctor to do iron infusion. I have been through 4 doctors now. Dr. Berkowski, are you seeing patients and if so can one visit you and see if a iron infusion can be done?
If my serum ferritin is below 75 what is the best iron supplement to help build it back up if an iron infusion is not an option. Would Feramax be a good supplement?
Unfortunately, there are only high quality studies of ferrous sulfate, but it is likely that many types of iron work. From my experience only, I tend to recommend ferrous bisglycinate or heme iron, which seem better tolerated and better absorbed that those with iron bound to other chemicals. I cannot provide research to support this however.
My Dr put me on elemental iron, so far I don't feel any different, actually I feel worse. I'm so weak if I squat down I don't have the strength to get back up. I feel so weak and tired all day everyday, like on the verge of passing out. I can't take it anymore.
With iron supplements, there is often poor absorption into the body by the GI system. Fortunately, testing iron levels again after two months of supplementation can provide objective data as whether the supplement is moving the needle. If not, iron infusion is indicated and much more powerful.
th-cam.com/video/oeYSHJkktQQ/w-d-xo.html
Dr. Berkowski, I have had 4 blood tests in 2023 to check my ferritin levels. The ferritin levels ranged from 48 to 103 with a saturation percent between 21% and 32%. 3 of the tests had ferritin below 100. 2 of the tests were below 75 and one test was below 50. Do these numbers suggest that i would potentially benefit from an iron infusion? I would describe my RLS symptoms as severe as they occur every night. Thank you, I very much appreciate your response.
Unfortunately, there are no studies that show optimal cutoffs for ferritin, and moreover, it does not exactly correlate with iron levels in the brain and may vary among individuals. Many people cannot absorb iron supplements to get over ferritin 75 ng/mL, but iron infusions can increase iron well above this. Some people who have ferritin levels from 75-125 or as high as 150 actually do benefit from getting the levels higher through infusion, but we do not yet know how to identify who will benefit other than through trial and error.
Thank you, much appreciated.
My Ferritin level was 37 on lab work, my serum level is normal. Should I get an infusion? Dr said try taking 2 irons pills a day. My hemoglobin was 16.2 hematocrit was 47.3, both on the high end.
Ferritin < 40 ng/mL, sometimes < 30 ng/mL, is the cutoff for "iron deficiency" regardless of what the iron studies show. Iron levels are a spectrum so a cutoff is somewhat arbitrary but these levels reflect low iron stores in the bone marrow, which is the gold standard for determining iron deficiency. As I discuss here, both the ferritin and the transferrin saturation% can be falsely high for a variety of reasons so if one is low, iron is most likely low, even when the other is normal or high.
th-cam.com/video/XoT3Wa96MvU/w-d-xo.html
Of course, ferritin of 30-40 ng/mL, whether iron deficiency is present or not, is generally far too low for those with RLS, where the goal is at least 75-100 ng/mL but varies substantially among individuals. This video discusses ways of supplementing iron for RLS:
th-cam.com/video/TB2Udcpdv48/w-d-xo.html
That's why certain patients have to go look look for someone else that do iron infusions and they can pay on their own they don't have to go through the insurance to pay anything if they go look on their own they can pay their own cash lol😂
With the 2024 AASM Guidelines recommending multiple types of iron infusion, hopefully third-party payers will be encouraged to cover the cost for those paying for insurance coverage and this will progressively be less of an issue.