Ferritin Levels: Well not sure what... - Restless Legs Syn...

Restless Legs Syndrome

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Ferritin Levels

Avosyl profile image
16 Replies

Well not sure what this all means re my RLS but for now i could not be happier. My doctor did a blood test in December specifically for the Ferritin and long story short it was at 15. Got the iron tablets and about four weeks later another blood test showed them to be up to 40. We were both delighted at this and he has marked my records to say they have to be kept an eye on. I still have to go back for a third one to see how well its going but in the meantime i was sitting here the other night when something suddenly dawned on me. Despite some really wet weather ( my legs act as a weather warning for me) my legs had not twitched or annoyed me in some time. I felt a slight ache as if they were going to start last night for about half an hour but it came to nothing. I am still taking the Pramipexol and the iron tablets but the complete relief i have at the moment for the first time since i was a child and it all started is amazing. I don't know how long it will last but it just goes to prove how much this site helps. I knew nothing of the Ferritin levels until i joined this site and its only because i have gotten my info from here that i got them checked. I doubt if its a "cure" but in the last year it has helped so much in my and my GP's education and handling of this horrible affliction i would just like to say thank you to all of you and share the good news.

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Avosyl
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16 Replies

Thats good to hear, and that ferritin level going so high after a short time, it can take months for some to reach anywhere near that number, and for some it never moves. I hope it continues for you.... :)

Avosyl profile image
Avosyl in reply to

Thanks Elisse your one of the people on here who have given me advice in the past so thank you very much. Think this is the first time i have had any luck with a medication in relation to RLS lol normally if there is an extreme side effect i tend to get it so that the levels are going up fast is a nice change for me ...:-)

in reply toAvosyl

Your welcome. :)

Here in Sweden we get iron injection if the ferritin is under 75, pills take too long time.

Avosyl profile image
Avosyl

They dont do injections in the uk unless your are severely lacking in iron. Its only a last resort. It also seems that i am one of the lucky ones where the levels have shot up very fast.

Jaynielynne profile image
Jaynielynne

They don't do injections in Wisconsin where I live unless it's very low.

in reply toJaynielynne

But every level below 75 Is very low if you have RLS/WED!

Here in Sweden 100 is the limit for serum ferritin in RLS/WED and if you have 75-100 you get iron pills and under 75 injections.

Kaarina profile image
KaarinaAdministrator

That is wondeful news, Avosyl. :-D It is great to hear that you and your GP have worked together on this and he has learned more about RLS as well as you.

I agree with you, Elisse is very knowledgeable about RLS and is always around to help others. She is a gem.

Kaarina

Jumpey profile image
Jumpey

Really glad that you have found respite from your RLS. That's fab.I'm interested to know how much iron you have been taking per day to make such an improvement in your ferritin level.

Avosyl profile image
Avosyl in reply toJumpey

Thanks Jumpey. I am taking Ferrous Fuarate 210mg three times a day. It seems i am one of the lucky ones that my levels have gone up as fast as they have done. I am going to go for another blood test next week to see how they are doing. Will keep you updated on then.

daisyw profile image
daisyw

This happened to me also. After reading on this site that low readings could affect RLS I asked my doctor to do a test, ferritin levels were 8, which is very low. My GP phoned me at home to say that there was a script at the local chemist's and to start taking the tablets immediately. Not perfect but I am much improved and get a great deal more sleep than I used to :). The one thing I couldn't understand was 'how was it my readings (Haemoglobin) were fine and I wasn't anaemic' although ferritin was so low. The Doc said that I wasn't storing ???????

Its the ferritin level that is the important reading for RLSers, its how your iron is stored... I will look for some info for you.

daisyw profile image
daisyw in reply to

Thankyou

Here is some info on iron and your ferritin level. Its a bit long winded reading it, but it might help some understand the ferritin level connection to RLS. rls.org/Document.Doc?id=2078

Avosyl profile image
Avosyl in reply to

Thanks Elisse that's very informative and i will print off a copy for my GP. Like Daisyw i wondered why i had a reading of iron levels being within the norm while the ferritin was below the normal range. This article explains a lot. Cannot tell you how much i appreciate the info you take the time to find and pass on. I have come further to finding respite from RLS on this site in a few months than i have in years of seeing various GP's or consultants. I have been really lucky in finding a GP who is so willing to find out more about this and who trusts me enough to listen to what i find out on here. I wish we all could find one like him. Thanks again for your help.

daisyw profile image
daisyw in reply to

Have run a copy off and thank you for the effort you put in on our behalf. Will have a read of it when I get a moment. :)

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