first improvement in over 20 years

[babydragon0]

I'll first start by apologizing for this post. I took Ambien CR 12.5 mg. and am now wide awake but feel stoned. It is only my second time taking the pill and i don't think I like it. Ok on to the post

I was tested last week at the OBGYN for low Iron levels as part of my prenatal treatment. I failed the test. The nurse said my levels were extremely low so they gave me a prescription for an iron supplement and the label reads: Hematinic with folic acid. From what I've gathered it is a 106mg tablet with folic acid. They also put me one 1000mg of Calcium a day. And I take both with my normal Prenatal Vitamin. So far things have been going great. I've slept more this past week then I have in months. My legs hurt but not to the point that I can't get to sleep and they have stopped hurting during the day.

I was tested years ago for low iron by the first doctor that said I had RLS and it came back normal. Over the years I've been retested but again Normal. I know that being pregnant can make you anemic but if the level of my iron was normal and I had symptoms before then why is it that I now have low iron and the meds seem to be working great?

I read an article about the level of iron in the brain being lower then the rest of the body and that this can cause RLS. I also wondered how you went about adding more iron to the brain to raise it's level. Do you just take a supplement like you would to raise it in the rest of the body? Would doing so make the iron levels in the rest of the body too high?

I'm just curious because this has given me some hope that maybe I've found what will work for me. I think that if it wasn't for the other uncomfortable pregnancy problems (backache, heartburn, etc) I'd be asleep now. I've sat at this computer for 3 hours and my legs have not twinged once. Too bad the Ambien CR doesn't seem to be working.

Oh again sorry if this is confusing. I'm writing while under the influence of Ambien CR.

[ViewsAskew]

You can have low blood iron - hence anemia - or low iron stores. The second is tested differently - it's your ferritin level. Many people have fine blood iron, but very low ferritin levels.

Taking iron can and does improve RLS in many people. If you search on the word "ferritin" you'll find many posts that talk about it and describe it in detail.

The short of it? Taking iron improves some and not others. Taking intraveneous iron seems to work better, but still not for all. I hope it works for you.

For everyone reading this, this is one of the first things that everyone with RLS should do - get their ferritin levels tested and take iron if it's low.

[babydragon0]

thats the thing. I've had my ferritin levels checked many times over the past 20 years. Every new doctor I've gone to has checked it and it always came back normal. It even came back normal about 6 months before I got pregnate (I started seeing a new doctor then). Now that I'm anemic from pregnancy it is the first time my iron has been low. and this is the first time I've tried an iron supplement.

I've read that the ferritin level in your brain can be lower the rest of the body. Which means that your body test normal and that they only way to know if your brains iron (ferritin) level is low is to have an MRI done. The low Iron in the brain has been linked to a problem with the dopamine system. This is even mentioned in the RLSF Medical Bullitin.

I'm just wondering if a low Brain ferritin level could be the cause of my problem and be why this iron supplement is making it better. It isn't gone by no means but my symptoms have gone but now instead of only getting 2 to 3 hours sleep I'm getting 6 to 8.

I'm going to ask my doctor about it next time i go see him.

[ViewsAskew]

Definitely iron in the brain is part of the problem for you (for all of us) - taking iron supplements doesn't always resolve it, though, but in your case it is - they say about 20% of those taking supplements have a complete remission of RLS. Another 40% get some reduction. But, the other 40% get no help. Taking iron intraveneously resolves it at a much higher rate - at least for awhile. But, the procedure is fraught with problems. If I lived close to someone who would do it, I would get it done, though. My ferritin tests low - has for several years.

The problem with the iron in the brain - the last research I heard on this - is that the cells that pick up and transfer iron do not work quite right. They have a docking mechanism that is slightly disfunctional. There are also not as many of these cells as in non-RLS brains. They just don't know why. So, the brain tries to deliver iron, but it can't do it very well. Then, the cells don't work right, because they are low on iron. This is implicated in the dopamine issue.

When you were tested in the past, Babydragon, did they use the "standard" lab values to determine if it was low? The labs set a value of between 10-20 as the low for ferritin. But, the RLS docs say we should be at least at 50 - and even higher is better. So, many times our docs say we are not low, but for RLSers, it is low. My first doc told me I wasn't low. When I had her re-test it 6 or 8 months later, I knew to ask the value (I didn't the first time). The second time it came in at 12 - she said I was slightly low. The lab's value for low was 15. The first time she took it, it was 18. So, all along I was low - but not according to the lab's values - and the doc didn't know (she was a GP - no reason for her to know).

[musiclover]

Babydragon0 I went to a Neurologist 4 months ago due to increased RLS problems. After a complete exam she sent me to have blood work done - to test the ferritin iron level. Mine came back at 8. The doctor immediately had me start taking 325 mg Ferrous Sulfate 2 times a day. She wants the level to be close to 100. I'll be tested again after 6 months or so. I don't think I've been taking it long enough to see a difference, plus I started Requip at the same time so it's hard to know which might be helping. Still have some bad nights but now are 1 or 2 bad nights out of 7 compared to every night.