Iron

[linda41]

Just wondering is Iron control RLS if you lack in Iron. As had blood's done and on high dose of iron at the moment it was just a question to ask if that was the case.

[beardedtwitch]

It is suppose to have some effect as mine was at 30 a few weeks ago and I went to my doctor and he has put me on Ferrous Sulphate 200mg tablets 3 times a day for 3 months to try and bring it up to 70 to see if this helps and I shall let you all know the results about mid December, by the way low iron is a type of anemia.

[Hidden in reply to beardedtwitch]

Beardedwitch, how do you feel now that you are taking

iron at that frequency?

[nightdancer in reply to beardedtwitch]

You are talking about your Ferritin score - "getting it up to 70"? That is different than a plin iron level, just for general information. It shows how your body stores the iron.

[Hidden]

ive had iron from my doctor, until its coming out of my ears, but it just does'nt seem to get my levels up, and im sick of taking it, i know i works for some but not for me sadly.

[Hidden in reply to Hidden]

Cast Iron Cookware, ever try that? My mother used to make meals

in that thing and all of my family had really nice iron levels...

it's just another way of delivering iron to the body..I do know

that you mean ferritin, but maybe mom did a great thing for us.

A old new invention, eh?

[Hidden in reply to Hidden]

Well Yikes, maybe so, but you do have RLS...taking iron is not the anwer for most people who have RLS..

[Hidden in reply to Hidden]

well ive had more iron, from my doctor, and my neurologist that i can remember, and it has'nt done me a scrap of good, every time they test me, my ferritin levels low

[Hidden in reply to Hidden]

I wish that I had a cast iron pan..I haven't had

a meal from one in 27 yrs...= /

Maybe I will buy one since I was reading up on a

local sales ad and saw them advertised for $44 US dollars.

My good news is that taking iron supplements raised

my very low blood level of 9.2 to 13.9. I took a

big glass of orange juice or a kiwi fruit only on

an empty tummy...ate chili with lots of beans in it...

frequently.. the tomato based soup may have helped.

I will get my Ferritin levels checked in 4 months again..

they were running lower than should be.

[Hidden]

Its our Ferritin Level that counts as whether we need iron to help with RLS. Ferritin Level test is different from just a blood test. For us RLSers it should read 70 or above, getting to that level is tough and very rarely do people reach it. Thats because absorbing the iron is hard to do Taking a Vit.C tab with the iron pills can help. Ferritin is how iron is stored...

It doesnt help everyone, and can take months to see if it makes any difference to the RLS. or whether the ferritin level actually moves...But, its worth getting the test done and trying the iron pills if needed with your doctors supervision...

I will add, it didnt help me....

[baccib]

iT HAS HELPED TREMEDOUSLY,. MY IRON WAS SO LOW NO DOC EVER THOUGHT TO CHECK UNTIL I WENT TO NEURO. SO THE IRON IS HELPING, THE NEURPRO IS HELPING WITH PAIN BUT HAVENT FOUND ANYTHING BT AMBIEN TO PUT ME TO SLEEP AND DONT WANT TO DO THAT. ITS A GOOD 2:30 AM MST, AND HERE i AM LOOKING UJP THIS OVER THE COUNTER DRUG CALL ALTERIL. ANYONE TRY IT???? LOOOKS LIKE TI DOESNT WORK FOR A LOT OF POEPLE. GGGGGRRRR GOOD LUCK TO US ALL

[Hidden in reply to baccib]

What works for one might be the enemy for the other..Ambien

didn't work well for me but I had that for exactly 1 night..It did

make me so tired that I thought that my breathing would halter

but it did not settle my legs down in the least. I wish you luck

in trying it. Let us know how that goes for you baccib.

[nightdancer in reply to Hidden]

it is not supposed to settle your legs down. It is to help you get sleep, take in combination with RLS drugs that do work for you. Ambien is for sleep only, not RLS.

[morth1]

i suppose i did inherit rsl. Looking back now i have had it for a long time. As i'v said before i turned to alcohol to help me sleep relieve the discomfort. Trust me dealing with addiction is no easy task along with rsl. Iam sober 6 years not one single drop. Its all to do with acceptance it;s never going to be perfect but on a daily basis i make my life as comfortable as possible. I am fifty nine, so age , and other factors also have to be taken into account, weight ect, ect. I had a bad night last night, but it has passed i can just hope tonight will be better. Some say stress triggers it, so i try to deal with problems that are annoying me, i wish you all well .And tonight you have a great sleep .

[Hidden]

morth1, first of all, let me say congratulations on kicking the alcohol

addiction, Way to go, you are a brave one. =)

Stress indeed is a trigger for me, so is being overtired.

I bet when you don't sleep well, your molehill size issues become mountain size.

It's hard to put things in perspective as is, let alone when you are worried

about getting to sleep, staying RLS free, and feeling refreshed when

you wake up...

[beardedtwitch]

I do not feel any change to my RLS at the moment although my doctor is very positive about the outcome but It is no good looking for any results until at least 3 months as it can takes a long time to change ferritin levels and many people never do raise them much so as usual with this it's pot luck!

[Hidden in reply to beardedtwitch]

I was told just the same as far as the Ferritin levels go..I am not even

going to be re-checked for 4 months..

It's a shame that our raising levels (ever so slightly) seem to take

even longer to give us any relief from RLS.. It's almost insulting

that the doctor may say "but your levels are improving" and

we are still just as restless as we were on day 1.

[nightdancer in reply to Hidden]

it does not work for everyone. I had iron infusions and got itv waaaay up, and still had raging RLS, so I don't even worry about iron any more. And, dietary iron does not bring it up , as in frying pans or your diet. It is supplements only that can bring up your Ferriti level. Cooking in an iron pan wuld not chemically help at all. (according to many many studies, not just me yakking)

[baccib]

I think what happened tonight, 4am MST, is I took a hot bath with the patch on. I thought if I wrapped a towel around it the water wouldnt get it. BUt I think it did and the medicine seeped out and now Im having the jerky legs and th arms hurt too. In order to get to sleep, I will probably revert to an ambien although i hate to do it . I'll once I get upstairs. This might sound fummy but I read where a climax helped the pain to go away. So I tried it and gavev my self a horrible Urine tract infection. gggggggggrrrrrrr

[Hidden in reply to baccib]

This is not good news..sorry that you are ill with that tract infection.

I had a kidney stone scrape on the way out and it infected me..

wasn't fun. I feel bad for you...

In America here, they make a clear covering to seal the patch

in..I had to go to a medical supply store to get them. They

use them for people who have had a surgery and they can

shower immediately...they work so well. I do wish that I could

send you a bunch at once. I guarantee that moisture will not

get in..It's brand name is Tegaderm-film by 3M.

[nightdancer]

Taking dietary iron is a hit and miss thig and it takes months and moths to get your levels up. It will never it 70 in 3 months, generally speaking. So, dietary iron, such as you find in foods or frying pans, takes forever, if you are already low. Nt veryone with RLS is helped by iron. n fact it is not too common, though it does happen. Instead of doing dietary iron, my doctor decided to hook me up with iron IV infusions fr 3 sessions/once a wk. ( I am in the USA) Even after infusing me with iron and we got my Ferritin up to 150, it never did a thing for my RLS, so we did all that so we could eliminate the iron factor quickly. Taking iron supplements, like I said, will take months, so don't expect any big dramatic changes right away, if at all. Infusions are considered experimental in some places, and i am pretty sure they are harder to get in the UK. But, I thought I would tell MY story to show that even if you take iron, eat iron rich foods and/or cook in a iron frying pan, it will not get your levels up fast. It can take 4 months to go up 5 or 6 pts. so, just sayin.........you will have to have patience to do iron supplements. Good luck! It all depends on your body absorbs iron. Iron helps dopamine work, so that is why iron works for some, but defintely not all of us.

[Hidden]

Boy oh Boy, the doctors lead me to believe that the ferritin levels

is the key to the magic kingdom...I was just crashed by your news

and Ellsies..=/ As I am taking these iron supplements, I am getting

monthly blood tests to watch how my liver is coping..I have RA as

well and some of those medicines are unkind to the liver..

[nightdancer in reply to Hidden]

It is ONLY the key for SOME people. grrrrrr

[hairyfairy]

I`ve had blod tests in the recent past for cholesterol, & they always check other things such as iron levels & liver & kidney function. All these are ok, so it`s a complete mystery as to what`s causing my rls.

[Hidden in reply to hairyfairy]

not iron levels hairyfairy. its ferritin levels different than iron levels , the ferritin level shows how your body stores the iron, and our levels should be around 70, higher than what is normal for others

[nightdancer in reply to Hidden]

Yup! Lots of doctor look at theb "normal" ferritin level, which is 12-15, or close to it. So, it takes a loooong time for supplemental iron to get a person up to 70. months for a few points, usually.

[nightdancer in reply to hairyfairy]

Have you asked to have a Ferritin level done? It shows how your body STORES the iron, not a regular iron serum test. Getting liver and kidney functions done is necessary with most of the meds we take, so that is good. Nothing but Ferritin shows up in blood tests for RLS, or causes for RLS. if at all. All the other tests are mainly to rule other things out.

[Hidden]

There is Primary RLS and Secondary RLS. so if you have underlying health issues which can cause RLS, they come under Secondary RLS, For the rest of us its Primary RLS..

Research Primary and Secondary RLS.

[cumoneileen]

had my blood taken last week, have to repeat in one month from day. my levels were high whatever that means. all to do with my RLS see how it goes. cumoneileen

[nightdancer in reply to cumoneileen]

You ned to ask what levels? The only thing that would be used to point towards RLS is your Ferritin score. see above. Other blood tests are just to rule things out. I would want to know which levels were high, if it is cholesterol,triglycerides, liver enzymes, kidney function,etc. all very important, but there is no blood test for RLS. Ask them if they took a Ferritin level which would be low, probably. that is the # you want tob know, ut if they said your levels were high, it is not Ferritin,and probably cholesterol, which they would not want to be high. If the storing of the iron is not affactimg you, it would be high also, so that can;t be it. You need to get curious about your blood tests, and know what they mean. It just helps everything move along when you understand more what is going on and what blood test results can affect you.

[jefro]

I recently spent a couple of days in hospital due to a dramatic loss of blood caused by diverticular disease. My blood count was 11.9 when admitted and 9.5 when I left. I have found that 14 is the normal level for a bloke so my levels have been low for some time.

I have posted here before about taking a small amount of iron and how it made my RLS easier, well I can tell you now that my RLS is the worst it has ever been and I now have it virtually 24/7 and even with taking 4Mg Ropinirole.

My GP (who is great I might add) says it will take 3 to 6 months to get my iron stocks up even though I am taking 200mg of iron a day. I don't look forwood to months of feeling like this!!!!

My best regards to you all and thank you for this site.

[Hidden in reply to jefro]

could be augmentation jefro, i got that with Ropinerole, maybe time for a change of meds

[nightdancer in reply to jefro]

4 mgs is the absolute max dose of Ropinerole.

[Hidden]

Jefro, it could just be that the Ropinerole is not working, so that might be why your RLS is really bad at the moment aswell as the low ferritin level, i take it you mean your ferritin level. Its the Ferritin level that counts on whether taking iron will help RLS.

[jefro in reply to Hidden]

Sorry Elisse, I meant to reply to you but replied in general instead. I'm so tired I don't know what I'm doing!!!

[jefro in reply to Hidden]

Sorry Elisse, I meant to reply to you but replied in general instead. I'm so tired I don't know what I'm doing!!!

[jefro]

I have only been on Ropinirole for about 6 months and it was controlling my RLS fine before the blood loss with 1mg at 5 o'clock and 1.5mg at 10 o'clock and going to sleep about 1am. Now I'm lucky if I fall asleep before 4am and get 4 hours sleep, only a couple of hours sleep last night, up at 6 this morning.

[Hidden in reply to jefro]

So, 1mg then 1,5mg is 2.5mg of Ropinerole, you could up the dose a bit while waiting for the iron to work....even just half a tab might be helpfull, i would ask your doctor if you could do that..

[Hidden in reply to Hidden]

Oooops, just re-read your earlier comment, you say you are on 4mg of Ropinerole, so that is the highest dose for RLS... sorry, i didnt read it properly....

[Martyrtothecause]

Just a general comment.. Don't self medicate with Iron. My understanding is that too much is just not good for you. Get your GP to check it out and if necessary he'll prescribe the correct strength and dosage..

[nightdancer in reply to Martyrtothecause]

Iron overload is waaaaaaay more dangerous. It can literally stop your heart from functioning, plus many other life threatening issues. Good post!

[Hidden]

It can cause as many problems to self medicate with iron, your GP is the one to ask about this

[nightdancer]

YES, never, never take iron unless your doctor tells you to. Iron over load is way worse than having low Ferrritin scores.

[jefro in reply to nightdancer]

Hi nightdancer..... I presume you mean me and self medicating with iron. As I said on here before, after a blood test my ferritin levels were "a little low" so whilst I was in Boots the Chemist I found a daily dose of 16mg which was the most I could buy over the counter and it appeared to work. I have a feeling that a diverticula was slightly bleeding over a few years causing my low blood count and finally gave way when i lost pints of blood and was rushed into hospital. The 200mg a day I am taking were prescribed by my GP with regular blood test's including one this Friday.

PS I find your comments very interesting and informative. Keep up the good work.

[baccib]

question my new doc asked was when was last time I had iron test. 2nd was B12. I was so low on the scale that we started both therapy. With this and the new patches...I am 92percent better but of course have to deal with side effects of patches which is fatigue.

[beardedtwitch]

As promised I can now tell you that after 3 months taking 2 x 200mg Ferrous Sulphate tablets my iron level has risen from 30 to normal levels (70 ish) and the doctor has said to just take one per day and see if it stays at this level. I do not get any leg cramps at night now so with this and the the use of my 'Circulation Booster' things are somewhat improved thank goodness. If this information helps even just one of you I will be very glad indeed.