Ferritin level

[terrilynn35]

I started taking slow iron about 4 months ago because I'm trying different things to help ween myself off requip. I slowly noticed an improvement in my rls since taking iron. I'm down to 1/4 of my usuall dose of requip most nights. My dr ordered a iron and ferritin level. My ferritin level is 17 after 4 months of 1 iron tablet a day. I asked if I should increase the iron to 2 tables a day she said no continue 1 tablet and she will recheck my ferritin in a year. I am questioning her advice because i think if i can get my ferritin level to normal my rls would be more manageable and I'll be able to finally get off the requip. I usually don't go against dr advice but she is not a rls specialist just a g p . Wondering how much iron other people have taken to increase there ferritin?

[Bkc1777]

Hi.

So good to hear you have a GP who understands you.

I got given iron tablets too (210mg) and got told to take it 3 times a day. I only take it when my rls unmanageable though to help it to ease. Your level is so low btw! What is your dosage?

Hope you feel a lot better once your level is normal.

B.

[terrilynn35 in reply to Bkc1777]

I'm only taking 27 mg of iron now. I think it's safe to double it

[Bkc1777 in reply to terrilynn35]

Well I am not a doctor so best to check with your GP. My level is 37 and as it is normal for normal people but low for us RLS sufferers.

I am on iron bisglycinate and that is 20mg and I used to take 2 at one time and my gp thought that was still too low.

So call them

Good luck.

B.

[Vrnzjwl in reply to terrilynn35]

I'm taking 65 mg of iron, equivalent to 325 mg ferrous sulfate. Maybe this won't work for everyone, but it sure seems like I'm not having the RLS problem like I was. I haven't had a restless night in a week and a 1/2 now. I'm keeping my fingers crossed

[involuntarydancer]

17!! And he/she proposes to leave it at that level for a year??!!! That seems wrong to me. 17 is low even by normal standards and if you've been taking oral supplements for a while then it clearly isn't responding to them. The US specialists - Johns Hopkins crew and Dr Buchfuhrer in Southern California all recommend getting levels to over 100. It doesn't help in all cases but can make a BIG difference. I would think about approaching a different doctor.

In my case I brought my levels up from 37 over a period of 6 months taking oral supplements. I take ferrous fumerate and ferrous bisglycinate depending on what I have to hand but I did read that it can be more readily absorbed if it's not taken every day so I started taking it every second day (counter intuitive I know) and that's when the levels seemed to increase more rapidly. I currently take 40 mg iron bisglycinate every second day on an empty stomach. When I last got it tested it was about 130-ish which was a huge leap and I do wonder if that result was skewed but even the previous result was around 80. I have noticed a marked improvement in my symptoms with the increase in ferritin serum levels.

I would say that your levels should be coming up more than they are and it is not good enough to leave them at around 17 for a year when they haven't responded to oral iron up to now. It is optimal to take it on an empty stomach and you should take it with vit C unless you are taking ferrous bisglycinate which can be absorbed without vit C.

[terrilynn35 in reply to involuntarydancer]

thanks nightdancer for your reply. I do take ferrous bisglycinate but not always on an empty stomach. I have not heard about it being absorbed better if not taken every day. Its worth a shot to try 40 mg every other day on a empty stomach. I have hopes I will be off the last 0.25 mg of requip with the iron. since taking the iron my symptoms have improved even with such low ferritin level. I talked to my sons neurologist about my rls and he said he doesn't prescribe dopamine drugs for rls and my dr just wants to keep increasing my requip dosage but it causes augmentation in me so I'm getting off that drug and making an appointment with my son's neurologist.

[Joolsg in reply to terrilynn35]

Listen to what your son's neurologist says- he's right. Definitely do not increase the dopamine as you say you are augmenting so the only thing to do is get off it slowly, which is what you are doing. Involuntary Dancer is right, your ferritin levels are way too low for RLS and you can't wait a year to get them higher than 17. Where in the UK are you? Some members on here have been referred by their neurologists for iron infusions with levels as low as yours so see your son's neurologist asap.

good luck

[terrilynn35 in reply to Joolsg]

I am in the US. I hope that is ok. After reading some of the posts here I noticed so many knowledgable people I thought it was a good place for advice

[Joolsg in reply to terrilynn35]

You are very, very welcome to the site. Have a good look through all the posts and also have a look at the UK site

rls-uk.org/

which contains lots of useful info

Jools

[NoMoRLS in reply to terrilynn35]

You'll get good advice and experiences in this group. Well seasoned

[Grammieof4 in reply to terrilynn35]

I am in the US too and there are others here. Where in the US are you?

[terrilynn35 in reply to Grammieof4]

I am in IL near chicago

[AnneJende in reply to terrilynn35]

I'm American too and this site is far more knowledgeable than any I've found in the US. Welcome!

I use an iron patch if the iron irritates your stomach.

[NoMoRLS in reply to Joolsg]

Excellent advice here. Love you guys

[involuntarydancer]

Well done for cutting your requip intake btw

[DicCarlson]

17 is very low. From Johns Hopkins Neurology "Since the 1950s, it has been known that iron therapy, even without the presence of anemia has benefits for RLS symptoms. Studies have shown a strong relation between body iron stores as determined by serum ferritin and the severity of the RLS symptoms. A study has shown that in patients whose serum ferritin was < 75 µg/l, oral iron therapy (325 mg ferrous sulfate twice a day on an empty stomach) on average improved RLS symptom after 3 months.

A recent study has shown that giving oral iron more than once a day or at a dose greater than 85 mg per day does not necessary lead to a greater increase in absorbable iron. Oral iron equivalent to 65-85 mg of elemental iron will be best absorbed if given once a day. It should NOT be given with solid or liquid food/dietary supplements or with milk. It should be given on an empty stomach an hour before eating or two hours after eating along with 100-200 mg of vitamin C. An iron panel (early morning fasting blood to check iron, ferritin, TIBC, and percent iron saturation) should be done after three months to check on progress of the treatment. Oral iron should be stopped 2 days before the iron studies are done. The goal is to get the serum ferritin above 100 µg/l." Link hopkinsmedicine.org/neurolo...

[NoMoRLS]

Be careful with iron. An overload can be seriously unhealthy. You can look up daily amount and we have iron users here that can help.

Good luck and congrats on getting down on requip.