Doctors unaware of low Ferritin effect

[Muftah36]

When I felt a resurgence in my RLS recently ,I searched for what was different for me . I take Tramadol and codeine , and with diet restrictions I had managed to have some control over my RLS . Gradually my progress seemed to wane and upon my recent blood work which my rheumatologist and my practioner said was all fine , I obtained a copy of the report only to find that my Ferritin is 50. I have put myself on iron supplements , I’m not sure of the best kind . So what I’m wondering is ,if there are any studies , papers etc on the Ferritin effect ,which I can refer to my physician to validate what I’m saying next time I see them , about the possible link to Ferritin of under 100 and RLS .

This resource is a life line to so many , thanks for all the good info and advice you give . I have been following the posts and have gotten thru some really tough times with the help on here.

[Hidden]

sciencedirect.com/science/a...

I hope you can download the full PDF

[Muftah36 in reply to Hidden]

Thankyou Manerva. I was able to download . Good info there which I will print for my physician .

[Allyp69]

So sorry to hear that your RLS is still not responding to treatment all the time...join the club. The person who comes up with an actual cure or treatment for RLS will be a life saver! As I've said many times on here, I take no meds apart from occasional Valerian as I'm aware if side effects, augmentation etc..

My husband took Tramadol for 10 days after falling and cracking a rib..the side effects were loss of taste, constipation etc...but expect you are well aware and need the meds.

Hope you get good advice about iron tablets etc...

All the best.

[DicCarlson]

The best iron for oral supplementation appears to be Ferrous Bisglycinate Chelate. It's a patented delivery supplement combining iron with glycine. It apparently crosses the blood brain barrier more readily and it also is gut friendly (many iron supplements cause constipation). I had raging RLS with a Ferritin level of 49. Supplements literally stopped the severe RLS in a week! I raised my Ferritin level to 105 within 3 months. My docs all said my levels were fine! Here's Johns Hopkins Neurology Dept info on iron and RLS... hopkinsmedicine.org/neurolo...

[WideBody in reply to DicCarlson]

Do you have any documentation on Ferrous Bisglycinate Chelate crossing the blood brain barrier? I have tried quite a few over the counter iron supplements before my doctor prescribed liquid ferrous sulfate. However my blood test is this week (hopefully). After that, I will start Bisglycinate Chelate. I will let you know how it works.

I have wondered whether different types of iron can cross the blood brain barrier.

I also wonder if Bisglycinate Chelate comes in a liquid. I will let you know.

[DicCarlson in reply to WideBody]

I think it is a misnomer that it readily crosses the blood brain barrier - however it is better absorbed than other supplements. Some info from the maker here... albionferrochel.com/index.p...

[WideBody in reply to DicCarlson]

325mg of Ferrous Sulfate = 65mg of elemental iron

each Iron Bisglycinate = 27mg of elemental iron. So I would probably take at least two. (depending on the results of my test, maybe 3).

The test is not to see if it raises my ferritin better. The test for me if it helps my RLS better. But I will still test after 3-4 months. Mark the calendar. I am ordering from Amazon today. I just scheduled my test for Monday (I am off supplements until then). I hope it helps, I am ordering the Ferrochel, I was surprised, it was not that expensive.

[Muftah36 in reply to WideBody]

Thankyou you for your response . I was hoping for some documentation to provide to my physician re the ideal ferritin level for someone with RLS . My physicians tell me I’m in normal range at 50 and I know that is not acceptable for RLS. But I don’t think he hears me when I inform him/her.

[WideBody in reply to Muftah36]

Minerva posted the best paper on iron and RLS I know of. Give that to your Doctor.

[Muftah36 in reply to WideBody]

Thanks for your reply . I would be really interested in knowing what iron preparations cross the blood brain barrier. Obviously that needs to happen in order to obtain results . I don’t think an iron infusion is in my future . I can’t even see my physician since Covid !

[WideBody in reply to Muftah36]

The paper recommends 65mg of elemental iron. On an empty stomach with a little vitamin C.

[DicCarlson in reply to Muftah36]

I think the only thing you can expect is to increase serum iron - and some preparations are indeed better absorbed than others (ferrous bisglycinate chelate). From Psychology Today "Iron gets into the brain through the blood brain barrier via transferrin receptors. Iron uptake into the brain is tightly controlled, but it does vary with iron status in the body, so folks with low iron will have less iron going into the brain and those with more iron in the blood will have more iron in the brain. Certain areas of the brain seem to collect iron and have much higher levels than others (the substantia nigra, the globus pallidus, the caudate nucleus, and the putamen.)"

psychologytoday.com/us/blog...

[Graham3196]

I have sent some information by private message.

[Shaft1952]

Hi Muftah36 I am on pregablin pramipexole & codiene, my nurologist increased my codiene to 60mgs at night. But I have recently been diagnosed with issues in 2 area's of my spine so GP increased my codiene for that. I can't take Teamadol. I think the pain in my spine is worse than my RLS at present. I hope that helps you. I was on 30mgs at night & 15mgs as required prior to seeing nurologist. Cheers shaft 1952.

[Muftah36 in reply to Shaft1952]

Thanks for your response . I am finding the opiates helpful for sure. I am still up most nights but just for short periods usually . But if an increased Ferritin would give me more relief , that would be the way to go . I hope you find relief for your spinal pain as well as your RLS .