My ferritin is 23 ng/ml.
My panel reads: Iron 64 mcg/dl,
Total Iron Binding Capacity 407 mcg/dl,
Iron Sat 16%
I am taking Nature's Bounty Gentle Iron (Ferrous Bis-Glycinate)-- two 28 mg every other day. How long might it take before I feel some relief?? My RLS is NOT severe... but still very annoying. I am not taking any meds.
Hmmm... I dunno. I typed this exactly as the Kaiser report came in. I will message my doc. In a message from her, she said I do not have anemia. And to take otc iron. Once I hear back from her, I'll be in contact. Thank you so much!!!
Btw, my "Iron Sat" of 16% shows the Standard Range is 20-50%.
Some sources say that a TSAT below 25% possibly indicates anaemia.
I would ask your doc, politely, on what basis is she saying you don't have anaemia. The usual measure of iron deficiency anaemia (IDA) is the haemoglobin level. So is she saying your haemoglobin is normal?
I hope the following makes sense
When it comes to using whatever iron is available the body gives preference to making sure that haemoglobin levels are OK. This is because without this we start running out of oxygen.
Haemoglobin levels then may be maintained even if this means that other parts of the body don't get enough iron e.g. the brain.
Since transferrin is the substance that transports iron a low TSAT suggests that there's not much iron around to transport. Hence although there may not be an actual anaemia it still means there may be iron deifciency in other places e.g. the brain. Brain iron deficiency is a cause of RLS.
Your results are slightly anomolous hoewever, because if your iron levels are generally low, then you'd also expect serum iron to be low.
It’s called “Iron Deficiency Without Anemia “ and it presents special clinical challenges. I can personally attest, it can be massively overlooked.
ncbi.nlm.nih.gov/pmc/articl...
I reported so many symptoms of anemia it’s not funny. All I heard was “Your blood is fine” right up till I got an infusion.
I was told by my psychiatrist who scheduled me for iron infusions...that there are questions if iron tablets have enough iron to penetrate the brain where the iron is needed to relieve RLS.
I'm sorry but I find that quite amusing. Of course you want simple explanations from a doctor so that you can understand. They shouldn't be so simple that it's what you'd say to a child. What your psychiatrist told you sounds like a fairy tale.
It's certainly not based on any fact and has nothing to do with why oral iron is not so effective.
I'm not sure why a psychiatrist should be treating you for RLS, it's a neurological condition, not a mental health problem. It would be better if you were treated by somebody who knows something about RLS.
It's great that you can get iron infusions, it is the most effective way of treating RLS. Do question however, the safety of having infusions. Really they should be given by a haematologist and you should have a blood test for transferrin saturation (TSAT), if this is above 45% it's not safe to have an IV iron infusion.
The real reason that oral iron supplements aren't particularly effective is that the amount of iron you can absorb from the gut is limited by a hormone called hepcidin. Without this hormone you could very quickly suffer from iron overload, even without taking any iron at all, just that in food.
The amount of hepcidin released is dependent on blood levels of iron, so if these are normal, e.g. your ferritin is above 12ng/mL then hepcidin prevents iron being absorbed. In which case it doesn't matter how much iron you take, it won't get absorbed.
The problem with people with RLS is that for some reason, not enough iron is transported across the Blood Brain Barrier and hence there's Brain Iron Deficiency even if there's no iron deficiency anaermia. This is a part of the condition and has nothing to do with how much iron is in a tablet!
It has been found that if ferritin levels are increased, stored iron, then brain iron levels can be increased.
The recommendations are then
If ferritin is below 75ng/mL then take an oral iron supplement which can raise ferritin to at least to 100.
If ferritin is between 75 and 100, little point in taking oral iron as hepcidin will prevent its absorption, hence an IV infusion is needed as it will bypass this limitation.
Your psychiatrist is reassuring however, I wouldn't want iron tablets penetrating my brain.
Kicker2, you may want to share the following science paper on iron for RLS with your doctor. She may view your results differently when she has seen this paper and its recommendations: sciencedirect.com/science/a....
Also, do try to read it yourself so that you are acquainted with the main recommendations for your situation (low iron, probably bordering anemia). I suspect you qualify for an iron infusion. Can't remember your RLS and treatment history, but there is always a good chance you may benefit. Taking iron orally is a very slow process to raise iron levels.
Finally, do discuss with your doctor whether there may be something going on that keeps your body from absorbing the iron. At least the levels in your body should be medium-high for people with RLS. How to raise iron levels in the brain, especially the areas involved in RLS is still elusive. Unfortunately. And no-one seems to work on that.
My hemoglobin results came in : HbAC% is 5.3%. The standard Range is 4.6-5.6%.
Omgosh!!! The Title page of my bloodwork said Hemoglobin. When I clicked on the link to these results, up came this A1C test result!!! I knew A1C was for diabetes, but didn't make the connection. Soooo glad you caught this. I have a message to call Kaiser because I had messaged about my ferritin based on what Widebody posted. The "hemoglobin" (diabetes test) likely would have been discovered at the next appointment, but great to cover this now rather than later.
Ok... so I did stop taking iron for 1 week before my bloodwork to "play it safe". If I need to get my hemoglobin "re=tested" (meaning tested) , do I need to stop taking iron again?? I'm already so low and if I made any progress, I certainly don't want to lose any progress. I do know that you have posted it takes a lot of supplementation before your iron levels go up, so I kinda assume that I may not need to pause my iron. (or pause just 48 hours and resume??)
I am hoping that my doc will/can order iron infusion... so definitely want to keep this in mind.
So my HGB results were in the CBC link. My HGB is 13.9 which according to Kaiser falls in the Standard Range.
Yes that's normal.
Improving serum ferritin levels
Infusion how long to \"kick in\"? Hehe. 
Measuring Brain Ferritin?
Long haul flight relief!
How long shall I trial codeine before giving up on it?
