I was wondering how many of us have had their Ferritin Level checked by their doctor, and what the result was and if iron pills were given and if it helped or not with your RLS...
I had my ferritin level checked a while back and started a course of iron from my doctor, but cant say it helped my RLS..
My ferritin level is around 85 and I was given no iron treatment.
That is a good level....the experts says it should be 75 or above for us RLSers.
They used to say 50 or above but have recently changed it.
I had my Ferritin checked many times. My first sleep study the level was at 12. Was given irron pills-did not help me one bit to get my numbers up. So, then to iron infusions, and they brought my Ferritin up tp 152, and I still had no difference in my RLS. In some places, iron infusions are controversial, but I had none of the possible side effects when I had one a wk. In the US, you have to check into the hospital to get infusions, so they are not to be taken lightly. The only thing iron pills ever did was make me constipated. :o)
waiting for my results so good to know the new recommended level thanks
Hi I had a 3mth supply of Iron tablets + they did not help my RLS one bit!!!,
My ferrite levels were not tested,I think the doctor was just covering themselves OR fobbing me off as this Was fairly early-on in my quest to get help from my surgery which has Around 10 G.P's in it! + it seem's from what "nightdancer" has posted, That this Iron thing + (RLS) is not always the cause of (RLS)???.
There is primary and secondary RLS. No one reason or cause gives us RLS. It can be purely genetic, with no found cause (idiopathic). Secondary RLS means you can actually figure out what the underlying cause is and treat it. Not cure it, but treat it. No one thing works for everyone, and your parents could have passed the gene to you, even if they di not have active RLS. Never pin your hopes on any one thing when it comes to RLS, unfortunately. It is trial and error. If you want a Ferritin test done, then ask them to order one for you. If they don;t then you will know that they don't know much about RLS.
I got my iron up with iron infusons, and it still did not help, but now I know that it is not the cause of my RLS. Tests are for ruling things out much more often than diagnosing, generally speaking.
Donna
Are making your RLS you on any other meds for anything that could be making it worse or causin it?some over the counter meds can drive you batty.
3 months of iron pills will only bring your Ferritin score up a few points, if that.
Had bloodtest on thursday checking for a lot of different things.ferroton level included rang for results todau and doc wants to c me appointment at 2.40 will keep you posted!!!!!!!
Your right, taking iron isnt always the answer. But if your ferritin level is low then sometimes and i stress sometimes it can help some with their RLS, if they can get the level up, that is the hardest thing to do for most. It can take months to get the level up, and for some it hardly moves.
Also iron shouldnt just be taken, you should have had your ferritin level tested first.. Too much iron can cause problems, aswell as not enough.
I posted the question because i did wonder how many people did have the test done, and if they hadnt to get it done... There could be people who MIGHT just benefit from taking iron after the test..
Hello had my results from ferritan level test today. Mine was 8 !!!!! Doc was quite worried have been put on iron tablets 200mg twice a day and got to try and eat better back in a month for another bloodtest to see if its improving if not she wants to look into anything going on in my bellycause i get alot of bad belly trouble for quite a long time now she said about looking into chrons disease and other stomach problems that could be going on. Im so glad i asked for a ferritin level test and its thanks to everyone om here giving me your advice thankyou everyone!!!!! I know this isnt the end but at least the ball is rolling now!!!!
hi, when mines was tested it was 5, and i had a course of iron, 3 months of it, got my ferritin level up to 58.....yay.....not a scrap of difference did it make, but i know it does with some of us, in my case the rls is in my family, maybe that would make a difference???
jean
Yes that is low... Just want to say, it is usually 375, 3 times a day for the iron treatment, but i am sure your doctor knows what she is doing.
Some more advise, take Vit.C with the iron, it helps to absorb the iron, and be prepare for constipation, get some senna pills in.
I hope your
level ups in a month, but it normally takes alot longer than that.
Having said all that, i am glad your doctor is investigating other problems that could be going on.
Look forward to an update on your progress.
As my friend Donna has said before, (not on here i dont think) If after taking the iron pills and you do manage to up your ferritin level to a reasonable level. and your RLS is still the same, then at least you know that isnt the reason for your RLS...
Hello, I think it's a very good thing to have your Ferritin levels checked out,
As other people have said it MIGHT Just help in your battle with (RLS)???.
+ We ALL know we will try anything to find out if it helps relive our symptoms!.
Thanks to you all as i will go back to my doctor + have a re-test + if my levels,
Are low + Iron tablets are prescribed i will take them for longer than 3mths
As nightdancer has mentioned 3mths is not really longer enough to raise,
the Ferritin levels, to see if the Iron is working!!!.
I am pleased my question has got some people who havent had their ferritin level checked geared them to go to their doctor and ask for it.
If just one person finds that they have low ferritin and taking iron helps them with the RLS, then that is one person less who has to suffer less with the condition. But i hope more than one will find it works for them.
I wish the iron had helped me, but it wasnt to be.
It is usual that you go back to your doctor after 3 months and get it checked again to see if it has moved.
This country (UK) doesnt support having iron infusions, which would be a quicker way to get ferritin up. I asked my doctor a long while back about them, and he gave a resounding NO....they dont do that for RLS here... Mostly because it can be a tricky prodedure and not without its problems but safer these days than it used to be years ago.
I have haemochromatosis (iron overload) which is a genetic condition that causes too much iron to accumulate and damages the organs. The treatment is to have blood removed every so often, which removes the excess iron. I have never taken much notice of the information on iron and RLS, thinking it could not apply to me, but after reading Elisse's comment about ferratin levels I checked yesterday when I went to get blood withdrawn. My ferrratin level was 350 when I started treatment 6 years ago and is now down to 23 - the nurse said that they like to keep it in the 20s. So I now know that the haemochromatosis treatment could be making the RLS worse, and I'm feeling pretty dumb for not working this out before!
A very late reply to you Ptillium -my husband had haemochromatosis -and had blood removed every month. He also suffered from twitchy legs [as he called it] - and now very late in the day I've realised why!
Hi Dangermouse,
I have stopped getting blood removed to let my iron levels rise and see if that helps the RLS - no improvement so far.
It's very difficult worrying about the treatment for one complaint impacting on the RLS isn't it? A tricky balancing act. I very much hope that letting your ferritin level rise helps the RLS, and doesn't cause you problems with the haemochromatosis.
I have just had my serum ferritin level result and it is 33 and the health centre said that my doctor does not want to see me so not sure what I will do. My RLS is mild with just aching calf muscles at night and sometimes in the evening and I find having a hot water bottle under my lower legs at night allows me to get to sleep (on my back) with no problems although I wake up a couple of times between 11pm and 6pm and do feel tired most of the day. One thing that I have found is that if just one medium glass of wine is drunk with dinner at 6.30 then things are worse although I think that white wine has more of a detrimental effect than red wine so why is this so?
I have heard/read somewhere that taking anti depressents for a long time - I stopped 18 months ago - can trigger RLS and this would fit in with mine appearing about 14 months ago.
Hi Beardedwitch, Alot of people find heat can help them get relief, it helps me sometimes, i use a heat pad.
You could ask your doctor if you can have some iron pills as your ferritin level is a bit low.
Your doctor i am guessing doesnt understand that RLSers need a ferritin level of 75 or above and thinks 33 is ok. Taking iron MIGHT just help your RLS, as yours is mild i would stay away from meds. for now, until it gets to the stage of keeping you awake all night.
I dont know why white wine and red wine would be different, but must have something to do with the grapes...??
You could also ask your doctor for a sleep study, see if you have any other sleep issues going on while you are asleep, might be a reason why you are tired most of the day.
For bad nights you could take a pain med. as that can be taken on a as and when basis and doesnt need to be taken everynight like most of the other meds for RLS...
Yes, some anti depressants can trigger RLS off....
Red wine is absolutely bursting with anti-oxidants which are beneficial to almost every part of us. White wine isn't !
Hi My Ferratin level was 280 and my GP was slightly concerned, having read the above I am now worried that it is too high and they try to lower it which will make my legs worse. I can just about cope with RLS 24/7 but know if it was worse I would not cope at all., Dam these b....y legs.
Our iron levels are unhealthily too high, because of all the supplemental, "enriching," of the foods we buy. Few cook from scratch anymore, Done correctly, iron levels should be fine. I'd recommend researching this online at Oregon State Universities' Linus Pauling Institute. Some very good information there on nutrition...Go For It
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Anyone suffer from haemochromatosis or have high Ferritin levels?
Serum ferritin level
