I have asked this question before but cannot find the answer. My endo and GP say my iron results are fine and that I am not anemic.
However I remember that there are situations where tests seem okay but where the isnt passing the blood brain barrier.
Is there a test that shows that? My endo told me to take gentle iron daily anyway (even though he said my b. tests wete okay?) I suppose because he knows my diet is very poor.
I am wondering whether to book to see Dr Chauduri in London after an unsucessfull meet with a neuro here in the north east (UK).
I have adequate medication for my restless limbs, however I would rather get to the root of the problem and stop the meds.
Do you think that I should just take gentle iron for 3 months and see if it helps?
And then make an appointment with a specialist?
Also to reiterate, which is the full iron panel I should take?
Many thanks for reading.
Jane 😊
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smilingjane
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I hope you get an answer to this. I would say not to take anything if you plan to see the specialist, as it would distort your results if they want to do their own tests.
Hi Jane, the key issue is that doing an iron panel wen you have RLS is NOT to assess whether you are anemic. That is the standard aim when iron in blood is assessed. The issue is to get an indication for brain iron deficiency (BID). BID can only assessed directly by autopsy and we don't want that, obviously. The closest indicators are ferritin values (should he mod to high in the 'normal' range for anemia) and transferrin saturation.
The background as well as what to assess and how to react are in the following tow papers:
The first one gives quite complete but also complex information. The second paper gives an extensive summary of the essential of iron in tue cade of RLS and very clear guidelines (also in boxes). I would bring both to your doctor and point specifically to the boxes on iron in tue second paper. Your gp should be able to handle this. Nothing very high-end thus no need for an expensive private consultation. A doctor willing to listen is all that is takes. Although sometimes hard to get.
The bloods you should have are serum iron, transferrin saturation (TSAT), ferritin and haemoglobin.
If iron and TSAT are low you have iron deficiency and if haemoglobin is also low then you have iron deficiency anaemia. You would need iron therapy to correct these before you could expect iron to be of any help for RLS.
If your GP says your iron results are fine they mean you have no general iron deficiency. However, in this case you need to know the exact result for your ferritin as the recommendations are that if ferritin is under 75 then you should start an oral iron supplement.
The aim is to raise frritin to at least 100.
50% of people who raise their ferritin to 100 benefit from this.
Ideally, it needs to be 200 or more.
Gentle iron, (ferrous bisglycinate) is a good option.
Take it in the evening at least 2 hours after eating
Take a glass of orange, vit C or folic acid tab at the same time
Do NOT take any antacid or magnesium at the same time.
Only take it every OTHER day, not daily.
I suggest taking it at least 3 months if not longer. It's best to have the ferritin test repeated to see if it's having any effect.
Please don't expect too much, only 50% of people benefit from raising ferritin to 100. Up to 60% can gain from an IV iron infusion.
Sadly not everyone responds to iron therapy for RLS.
Correcting kow iron levels does not necessarily "get to the bottom" of RLS. Primary RLS is genetic in origin.
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