ferritin

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Momo
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ferritin

Postby Momo » Fri Sep 19, 2008 11:18 pm

i got my blood test result, all of them, cuz i wanted to know my exact ferritin level, so they sent me a paper copy of the whole thing

anyways... my ferritin level is 69.0 ng/mL


is that high enough?
Never go to a doctor whose office plants have died.

becat
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Postby becat » Sat Sep 20, 2008 1:22 am

Hey Momo,

Gosh I would be jumping for joy if I could hit that high in my own ferritin. I think mine was around 6 last time we checked it, early this yr..

Unless something came out this yr at one of the National meetings and it's all changed up, 50 mcg/L would be the best place to start for most RLSers.

So, your above the rate thus far.

If the number is changed I'm sure someone on this board has been to a meeting and we tell us both, but sounds great to me.

Lynne

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Aiken
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Postby Aiken » Sat Sep 20, 2008 3:35 am

Momo--

Well, that's normal for a person who has no RLS. At the very least, it means you don't currently have a significant iron absorption problem, or you'd probably be down below 20 or 30.

For RLS patients, we're told it's good to try getting it up to 100 or so. For people like me, whose RLS seems to be due at least in part to insufficient iron affecting the dopamine system, that helps. Others seem to have dopamine problems for a different reason, and don't benefit from more iron.

There's only one good way to figure out which type you are. I'd say try to get it up to 100 and see if it helps. If you get no change, let it go and pursue other ideas.

Edit: SleepyRed just mentioned needing ferritin at 150+ in this thread: http://bb.rls.org/viewtopic.php?t=6251&start=23
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

ViewsAskew
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Postby ViewsAskew » Sat Sep 20, 2008 4:52 am

I surely wish we all had low ferritin and that getting it up would resolve all problems. Too bad it's not that easy.

Since iron does affect this how thing and since some people DO have positive results with the ferritin being higher than 150 (see Aiken's link to Sleepyred's post), it is worth a try.

I am so happy that you got the info. You're doing great advocating for yourself.

Now that you know that this isn't an "easy" fix (people's who iron is below 50 are more likely to respond to ferritin according to preliminary research), it's time to see the next options.

You also know that there is no "easy" fix in terms of diet or other potential illnesses - you don't drink alcohol, you don't smoke, you don't tkae any OTC meds that would worsen it, you don't have thyroid or diabetes, etc.

It seems that the only non-pharma thing left is to try things that tend to work for a lot of us:hot baths or ice (some like hot, some like cold, some like to alternate to two), yoga or stretching exercises, massage...am I leaving out anything that seems to work for a lot of people? Hopefully someone else will fill in what I missed. I can't remember if you tried any of the OTC vitamin/mineral options like B-complex, magnesium, calcium, vitamin E...

All of those things, except the vitamin/mineral suggestion, are used at night when the RLS strikes. You may already do some of them. If you haven't tried them, please do. I find the bath thing doesn't work too well but the stretching/yoga works great. It used to always be enough to get me back to sleep. But, other people get great results from the bath.

After you try some of these, let us know if they are working or not. If not, the only option that I know of that is left is medication. Again, if I'm missing something, please someone, correct me!
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Momo
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Joined: Sat Jun 21, 2008 12:18 am
Location: NH, United States

Postby Momo » Sat Sep 20, 2008 1:19 pm

yea, i have tried all those non-pharm things, and they dont really work, execpt for the bath helps temporarily.

i guess i just have to wait to see what my neurologist thinks. and my appt. witht them is in like mid oct. so yea...

but thanks for the input,
i am still taking iron (as well as those other vitamins) but i am not expecting any results, cuz i have been taking them all summer without any luck.
Never go to a doctor whose office plants have died.

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ctravel12
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Postby ctravel12 » Sat Sep 20, 2008 2:35 pm

I know that my b/w when I first started seeing my neurologist was 50 and he wanted it between 100 - 150. He put me on a low iron tablet and when I had the last b/w it was 135 so for me the iron table worked.

Also I have noticed since our weather is not as hot and humid as it was my rls is doing much better. I still now and then have the symptoms but not as bad as I did this summer. We had more humidity this year then we ever had before.

The humidity started around May and did not end until just a couple weeks ago.

Also one other thing I wanted to mention is that I went to see my neurologist (3 mo check up) he asked how I was doing and discussed what was going on with my rls.

I had suggested (not his) of maybe trying a pain med and he had samples of Lyrica. Well that pain med is definitely not for me. I had tried it twice and I was like zombie the next day. Could not function at all. I will just have to work through the pain when it hits next time.

I know some people can take it and that is great but not for me.

I guess that what we say what works for one may not work for someone else and how true that is.
Charlene
Taking one day at a time

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Aiken
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Postby Aiken » Sat Sep 20, 2008 10:17 pm

Momo wrote:i am still taking iron (as well as those other vitamins) but i am not expecting any results, cuz i have been taking them all summer without any luck.

Ah, Momo, that may not be true. Your ferritin is at 70 after a full summer of taking iron supplements. That suggests to me that your ferritin before was probably lower, possibly a lot. It may be that you've brought your ferritin from 30 or 40, or less, all the way up to 70. That's a long way, but it may be that you're still just halfway to the goal.

Personally, I seem to get worse when my ferritin drops below 70 or 80. I need to keep it up around 100+ to get good results, which is exactly what my doctor said was the case for RLS patients.

I wouldn't get disheartened yet. Give it a few more months and then get your ferritin checked again. If you've gotten close to 100 and there's still been no perceptible change, then you can probably think it's not the right course for you.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

john_a
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Joined: Sun Aug 24, 2008 3:40 am

Postby john_a » Sun Sep 21, 2008 1:07 pm

My ferratin levels taken about three weeks ago (I have never had them checked before reading on here) were 225 ug/L with the reference range being 30-300.

We use metric in Australia, how do these compare with imperial readings?

Thanks


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