Measuring Brain Ferritin?

[Restlesssinger]

Many of you have mentioned taking "gentle iron" to help the RLS. My physician tested the level of iron in my blood, but claimed there is NO WAY to determine the amount of iron in the brain. The blood iron came back within normal limits, so my physician recommended I NOT continue taking the "gentle iron." Does anyone in our Forum know the name of the test which would measure the level of iron in the brain? Thank you.

[Pippins2]

The test you need for RLS is Ferritin iron which measures stored iron. Get the exact number as Itneeds to be at least 100 for someone with RLS x

[Restlesssinger in reply to Pippins2]

Thanks, Pippins2!

[Graham3196 in reply to Pippins2]

Recent information from Doctor Buchfuhrer says that he and the team at Johns Hopkins are now using a ferritin level of 300 as the standard for RLS patients. In Australia up to 500 is considered normal.

[involuntarydancer]

I have a feeling there is a test that can be carried out to test brain iron but only after death.

Like Pippins says the serum ferritin is the test we use. It is important to get the actual figure (as Pippins also says). They always do this - tell you it is 'normal'. Normal can be anything from 20 to over 300. We need to be over 100 according to latest rls experts so you need to know where in the 'normal' range you are. It is quite possible that your physician does not know about the different requirements for serum ferritin in rls sufferers. Many do not.

[CalgaryContributor in reply to involuntarydancer]

Serum ferritin can appear totally normal ... while brain ferritin is running on flat out empty!!!

Apparently there is at least one test that is a specialized type of MRI for circulating ferritin in the brain. And yes it is done on live people ... no need to wait for death!

That is all I know and is according to a friend of mine who is also a medical doctor.

Realize that this was posted two years ago but figured I would respond just in case you are still looking fir information.

[Restlesssinger in reply to CalgaryContributor]

Thank you! I've been taking 25 mg. of Gentle Iron every morning on an empty stomach along with 1,000 mg. of Vitamin C. That, along with Low Dose Naltrexone, has nearly gotten rid of the RLS for me!

[Pippins2]

Studies have been done to measure ferritin iron levels in cerebrospinal fluid -gathered via lumbar puncture x

[Parminter]

Ferritin, not iron, will give a fair estimate of brain iron.

[TaraJR]

So if your basic iron level is ok/ good but your ferritin is quite low, how do you raise ferritin level safely, without your iron level going too high? I assume you take an iron supplement, but it's dangerous to raise your iron level too high? Sorry but I'm confused!

[Hidden]

Just keep taking gentle iron but every 2nd day to fool the mechanism which decided there's enough in your body and have your ferritin checked regularly to make sure it doesn't go sky high I think. If your ferritin isn't sky high your iron levels aren't either as far as I understand

[DicCarlson]

There is no test for brain iron - as suggested above serum Ferritin Level is a key marker for a potential RLS trigger. Again the best info is the Johns Hopkins discussion. I did read somewhere - that Ferrous bis-glycinate chelate readily crosses the blood/brain barrier - but I can not find that info again. hopkinsmedicine.org/neurolo...

[tom137]

My serum ferritin was 67 six months ago. After taking gentle iron every other night for 6 months i tested again and serum ferritin was still 67. So my doc added ferrous sulfate once or twice a day. It has a higher iron content but possibly not absorbed as easily. Have to test again in a few months. Ive been as high as 117, but if i stop taking any type of iron supplement it quickly drops. Symptoms of RLS definitely better when over 100.

[Hidden in reply to tom137]

Be sure to add Vitamin C to help increase absorbtion of the iron!

[Restlesssinger in reply to Hidden]

Yes, agreed!