My Ferritin level is 29.7. I know that I need to get it up to 100-350 range and the best possibly only way to get my levels up that high is an IV iron infusion.
Even though I've explained the situation that RLS suffers needed higher levels, and just how hard it can be to obtain those levels with oral iron, my doctor just doesn't get it. and won't give me iv iron. She wants me to take oral iron for a couple months and re-asses. meanwhile I have to continue to suffer.
She also mentioned that it would be very difficult/ impossible to get insurance to cover an IV iron infusion.
how does one go about getting a doctor to give you an IV iron infusion and is there a trick to get insurance to cover it?
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RLSgirl
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RLSgirl it might be a good idea to give oral iron a try first. A few of us on here are quite lucky and actually get nightly relief from the RLS by taking a tablet or two of ferrous bisglycinate (I buy Gentle Iron from Amazon) on an empty stomach about an hour before bed. Then there are several people on here who have been taking oral iron on a regular basis and found that in the long run it has helped them. And some it does nothing. Since you recently checked your iron levels and they are quite low for someone with RLS it is unlikely you will suffer from iron poisoning by doing a trial run of the recommended dose. For the price of $10 you can find out if your RLS is responsive to iron supplementation. I won't be without it.
I don't know why there isn't more general interest in Ferrous bis-Glycinate as a preferred oral and transdermal iron supplement. It is non-constipating and very easy on digestion. I don't see it mentioned in any studies regarding iron and RLS. And seeing that RLS is pretty much a dysregulation of iron and/or dopamine IN THE BRAIN - it would stand to reason that Ferrous bis-Glycinate would be the best supplement as it readily crosses the blood-brain barrier. Once a day 18mg took me from Ferritin of 49 to 105 in 3 months - and literally reduced RLS dramatically in 3 days! More at the company website albionferrochel.com/
I presume you are in the US so I can’t advise how you get insurance to cover certain treatments as I’m in the UK.
I managed to get my serum ferritin up from around 50/60 to 165 over 18 months by taking ferrous bisglycinate every other night (25mg pill and 45mg transdermal patch from PatchMD in the USA).
Someone on here wrote that taking the supplements every other night worked better and I’ve followed that advice.
It doesn’t work for everyone but as your level is so low, you have nothing to lose by taking the supplements.
Make sure you have all iron bloof values assessed again in 6 months max. There is always a risk for iron overload, although probably not as much in RLS-ers. And definitely lower risk with taking iron orally every other day. But, better safe than sorry.
I would suggest you keep looking for a supplier who will provide you with an intravenous iron infusion. With proper care there seems to be very low risk and it might save you three months or two years of misery. There is even a chance that extra iron will not help so you want to know that in a few weeks not a couple of years, so you can try something else.
The cost of an infusion doesn't seem to be very high if you can't get insurance to pay for it. I have been told its about AUD240 in Australia. (That's about USD180) Some people need repeats to keep their iron level up so it could be an on-going expense.
I just thought I would add that if you do need a repeat then the doctor should be looking for a reason, probably loss of blood somewhere inside your body. According to Doctor Buchfuhrer. Not a nice thought but you might need to think it.
Sorry this is so long but its a bad news -good news story waiting for a happy ending.
Today I met the GP we don't need. He works in my local clinic and also in another clinic that include facilities for iron Infusion. So my regular GP said I had to talk to this doctor who triages patients for the infusion clinic. Nice guy at first but agreed that he didn't know much about RLS. I explained my background and the changing attitude overseas toward the importance of ferritin being raised to about 300 or so. I also pointed out that this was still in the range of normal. He looked up something on his phone ( I hope he didn't just Google RLS to see what I was talking about) and just said no because your ferritin is normal. We had a brief discussion in which I offered him copies of the paper on iron and a couple of quotes from Doctor Buchfuhrer. I explained to him Doctor Buchfuhrer's recognition in the world of RLS and that he worked at Stanford and was associated with John Hopkins Hospital. He refused to read them. I asked if he has read anything about RLS in the last two years and he said no and just repeated that he can't help me. I was annoyed and told him.
Next GP I apologised for acting like I knew all about my condition and that I might insult him by telling him what I want rather than asking his opinion of what would be best for me. He laughed and said that there are thousands of diseases out there so he can't keep up with all of them. Many patients are inspired to research their condition far more thoroughly than he could and he just wanted to help me get better any way he could. Chalk and Cheese.
I supplied him with my latest pathology report showing ferritin at 108. He said that he wanted to make sure an infusion couldn't harm me but since the target was still in the "normal range" he was very comfortable about that. He understood about the chance of an anaphylactic reaction but he knew I'd be safe at the hospital I proposed so long as I spoke to one of their specialists first.
I already had contacted a large Melbourne public hospital and they recommended I talk to their sleep clinic, all I needed was a referral from a GP. A few minutes later I had the referral and it was faxed away to the hospital. So sometime in the next 6 weeks ( as soon as the hospital gets a cancellation) I will get a phone call to meet one of their specialists and an interview as a preliminary to getting an infusion. I will go armed with notes again and I hope I can persuade the specialist that I need an infusion. I am a little less confident but still determined!
If they agree to do it then at the hospital all the costs will be met by my fellow taxpayers. Thanks to some good socialist governments in the past. I've been paying taxes (happily when I see them used for good work) for 60 years so I deserve to get something back.
Trying to establish Doctor Buchfuhrer's status is a bit difficult from his clinic's website. I am not sure if he works for Stanford University or if he has a sleep clinic in the city of Stanford. Does anyone know if he is associated with the Stanford University and his official status there? I referred to his published book and that he's been in practice for many years. With more TV doctors around than you can poke a stick at I understand that a medical doctor should be a bit careful of a patient walking in and quoting an "internet doctor" who the GP has never heard of. Delicate problem.
I’m sorry you had such a bad experience with your GP. But I can empathize. It was similar to my experience.
At this point I have an appointment with a neurologist in Nov. I’m just going take oral iron and the Patch MD iron until then and get my blood tested again to see if it has gone up with any significance. But even if it has, It sounds like its nearly impossible to get one’s ferritin levels to the abnormally high levels the RLS experts are recommending without an iron infusion. I hope I can convince this neurologist to give me an iron infusion.
If you need a doctor with some recognition you can also reference Dr. Christopher Early from Johns Hopkins…..but that still didn’t help me when I was talking with my GP!
Isn’t is just a shame that a Dr. would admit that he cannot know everything, but then when you confront him with legitimate information he won’t consider it! Sometimes They just seem to have a God complex!
I’ll keep you all posted on how my neurology appointment goes in Nov.
The difference between God and your doctor is that God knows he (or she) is not a doctor.
I'll dig out some references to Dr Early. His expertise might be more clearly defined. That's probably what we need - something that establishes the credentials of one of the experts we are quoting in about 20 seconds. The John Hopkins University School of Medice has a good ring to it.
I have had ferritin between 10-30 for 10 yrs and just finally got infusions. I’m on 3rd of 4 this week. I was finally referred to hematologist who of course better understands. Just got a blood draw today. So far no improvements so waiting to see if my levels have been effected at all
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