having ferritin serum level checked

[Gabby]

Might be a silly question but is there a difference between having your iron levels checked (which I do yearly) verses having ferritin serum level checked??

[Rustsmith]

The simple answer is yes.

The normal blood work that is done to determine iron levels does not usually include ferritin. When I last had mine checked, the lab's form for the doctor's orders had one box to check for the regular iron analyses and a separate box on the other side of the page for ferritin.

Further, it is entirely possible that your normal iron values will be good, but the ferritin levels could be low.

[Polar Bear]

When you get the results of a ferritin serum check please ask the doctor for the exact reading levels. For a non sufferer a level of 20 or 30 may be normal. For us it's best if the level is up around 100, especially if taking a DA medication i.e. ropinirole or mirapex.
Not all doctors realise that we need this higher level.

[Gabby]

Thank you for that information. I will be calling my primary care physician to have my ferritin level checked. I am on an iron supplement currently - 325 mg once a day. If he does find that the level is low then what? I am also on ropinirole

[Polar Bear]

I am not speaking from experience here but.... most folks appear to use oral iron supplement. My understanding is that it works slowly and once the ferritin reaches around 50, the oral doesn't make as much headway.
Others have spoken of iron infusions which I believe work in about 4/5 weeks but of course convincing a doctor that this is necessary is another matter.

[ViewsAskew]

Thank you for that information. I will be calling my primary care physician to have my ferritin level checked. I am on an iron supplement currently - 325 mg once a day. If he does find that the level is low then what? I am also on ropinirole

Polar Bear is right. Most docs suggest oral iron - ferrous sulfate is used most frequently - 3 times a day, on an empty stomach, taken with some type of acidic thing - like orange juice.

If you are lucky, you'll get it high. If not, you'll likely get it to the 50-70 or so range and have difficulty getting it higher. Or, you may not tolerate it at all.

Some people find they get relief very quickly. Some of us don't get relief with oral iron at all - that's where the infusion comes in.

[badnights]

I got my ferritin from 20's to over 110 in about 3 months (iirc), using 2x 300 mg tabs ferrous sulfate daily (with vitamin C).

I made no headway at all using ferrous gluconate, which I think has a lower content of elemental iron.

[Gabby]

has anyone's RLS improve after their levels were increased?

[Polar Bear]

Yes Gabby, some people are helped greatly when their ferritin serum levels go up.
Have you done a search of this board regarding ferritin?
I put the words... ferritin symptoms improved ..... into the search box at the top right of the page and many threads came up.
This is one of them viewtopic.php?f=4&t=7715&p=58623&hilit=ferritin+symptoms+improved#p58623

[ViewsAskew]

has anyone's RLS improve after their levels were increased?

As Polar Bear said, many people's are. Do a search on serum ferritin or Earley (the doctor who did the original research about it). You'll find information on clinical research and more.

[Gabby]

had my ferritin levels checked - it is 77 - now what???

[Polar Bear]

It would be good if your ferritin was up around 100.
As previously mentioned, oral iron can help to raise levels although it can take some time, perhaps several months.
You are already taking 325mg once a day, you could try doubling this - with your doctor's permission.
It is best to use ferrous sulfate (with vitamin C).
Then have your ferritin checked again in a few months to see if there is any progress.

[ViewsAskew]

Some doctors believe, such as Allen and Earley, that if you're having symptoms, your ferritin isn't high enough. At least that's how I interpret what they are writing/saying. The problem is that very few other people believe this. And, even if we get the ferritin higher, there is no assurance that it will get into our brain, where we need it.

If you're having luck taking iron orally, if we were me, I'd take it until my ferritin was at least 200 and see what happens. Some people have trouble using oral iron to increase the ferritin. If it works, keep taking it. It won't hurt until it's really high - like 250 to 300 (different labs have different values, but I've seen values as high as 300, so that's what I'd go for).

But, that's me! Not sure what you're comfortable with.

[EeFall]

]
If you're having luck taking iron orally, if we were me, I'd take it until my ferritin was at least 200 and see what happens. Some people have trouble using oral iron to increase the ferritin. If it works, keep taking it. It won't hurt until it's really high - like 250 to 300 (different labs have different values, but I've seen values as high as 300, so that's what I'd go for).

After having been given 3 infusions of ferritin over a few months period I was checked for ferritin levels several months after that and it was 335. It sure hasn't hurt me and it may have something to do with the Suboxone I now take working so well.

[Gabby]

Spoke with my Primary Care doctor and he wants me to double the oral iron supplements I'm taking. When I was first diagnosed with RLS several years ago the "RLS Specialist" never told me about iron deficiency in RLS patients. Thank God for all your wonderful people who shed light on this awful disease