Ferritin and iron

[ViewsAskew]

I'm with Susan. Press for the ferritin test.

I also agree so start low. Start at .125 of a tab and see if it works. My doctor started me at .25 then I read Dr Buchfurer saying .125. Made a HUGE difference in my side effects. I needed that lower dose. And, best, that lower dose worked for me initially.

[Hickoryeer]

Thanks. I am male btw. I will take my first .125 Mirapex dose this evening. I'll let you know what happens!

[ViewsAskew]

A lot of the men on this forum have low ferritin - not all, of course, but many of them. It does tend to be worse for women.

Originally they said we should have ferritin of 50. Now some of the docs are saying at least 100. (It's over 225-250 that it's a problem, so as long as you're under that, you're fine).

[Betty/WV]

My doctor also started me at .25mg Mirapex at 9 PM. Then when I started having symptoms earlier in the day, he told me to take .25 mg also at 11am. After that I heard that Dr. B said always start at .125 mg., so what do I do now.??? Go back to .125 mg. or stay with what I am doing? It works pretty well. Once in a while I have symptoms, but just for a little while, then it goes away. My neuro is young and still doesn't know much about RLS but is willing to give it a shot. I copied the Mayo Clinic Agorythm and gave it to him and he acted pleased to get it. Wish all you RLSers the best, and especially a good nights sleep. BETTY/WV

[ViewsAskew]

Betty, remember that we're not docs....with that said, here are some options that our members have tried and were successful.

1. If you have used it before (and I think you did but it didn't work), try switching to Requip for two weeks. Then switch back to Mirapex at .125 and see if it works. If it does, great. If not, go up to .25 and see if it works. You can also cut a .125 in half and take .18.75 (that would be .125 PLUS half of a .125 OR half of a .25 with a quarter of a .25).

2. Go off the Mirapex for 2-3 weeks. Try something else during that time, like a benzo or an opioid. Sometimes, if you haven't augmented much, this will work fine. After the 2-3 weeks, try the Mirapex again.

3. Simply cut back the dose of Mirapex to .125. When I augmented severely, the doc had moved me up to .75 over time (from .25 prescribed). By the time I got to .75, I was crazy with RLS, all day. I wanted to stop the drug, to I started tapering it. I realized I couldn't stop it, but by cutting it back, I was able to reduce my symptoms quite a bit. It didn't make the augmentation go away, but for several months I was able to manage until I could get the help I needed.

I don't know what the "right" action is....and there may not be a right action. You could also run it by Dr Buchfurer and see what he says.

[sunrainwatershine]

RLS post on iron

I was very surprised that my neurologist did not test my ferritin levels when he diagnosed me with RLS about a year ago. It took me a while, but when I did find all the research indicating that raising ferritin levels can cure/significantly ameliorate RLS, I was not happy. My ferritin levels did test low, 9 and I have been supplementing under the supervision of my primary care physician with oral iron sulfate/fumarate for three months. But my individual health is not why I’m writing today.

Since there is such a large amount of research indicating a connection between low ferritin levels and RLS:

-Shouldn’t everyone who is diagnosed with RLS be tested?
-Could the RLS Foundation recommend ferritin testing as a standard practice?
-How about polling members on their ferritin levels/experience with iron supplements/transfusions?
-Or dedicating one Discussion Board to the topic?
--How about a pamphlet/screen that summarizes the current research?
--Could the Foundation begin compiling a list of MD’s that do transfusions/the rules/law/health insurance mandates on iron transfusions?

Because low ferritin is implicated in a number of health disorders--besides RLS--addressing it is a clinically appropriate strategy regardless of whether it cures RLS. On the other hand, it is not an intervention that will make Pfizer (the makers of Miraplex) one bloody red cent. Anyone who suffers from any health disorder should always be aware of which side of the fence the profit motive lays. In the eyes of large pharmaceutical companies we are the perfect customers—customers for life. Iron cannot be patented and thus pharmaceutical companies have no reason to fund studies of its effectiveness or recommend that doctors prescribe it.

I will have my ferritin levels tested this week and if they are anywhere below the upper threshold of 150, I will continue to take oral supplements and investigate the possibility of a transfusion. And I will continue to ask, “Why?” Why is the most obvious remedy the most difficult to come by?

[ViewsAskew]

I absolutely think everyone should be tested.

I can't speak for the Foundation, but I am going to guess that the problem right now is that treatment doesn't always pan out, even transfusions. And, they are dangerous at some level. It makes it hard to say everyone should do this when the studies are still in motion and the efficacy isn't proven.

I would definitely suggest that ANYONE that can get to Johns Hopkins and is willing to participate in their studies, to please do so. The sooner they can make some recommendations, the sooner we will all benefit.

[sunrainwatershine]

I'm wondering if there's a way to get my suggestions for gathering information to the Foundation?

How about a poll on ferritin levels and iron supplements, oral and IV?

Low ferritin is implicated in many disorders, and probably a culprit in many ways yet to be discovered.

If doctors weren't paid like plumbers, ie, by the item, then an MD who found possible signs/symptoms of low ferritin, like RLS, would test for it and then, if necessary, address it, as part of proper preventive medicine.

Recommendations for testing are not the same as recommendations for treatment.

I think the Foundation should recommend testing for ferritin and then let the RSL'er decide from there what to do about the results of the test, if anything.

[ViewsAskew]

You can write them and suggest it. If you are a member, you can write a letter to the "Ask a Doctor" section of the quarterly newsletter. You can also call them. All of their information is on the main website.

[satipler]

I learned in a recent newsletter (Nightwalkers?) that for RLS sufferers, a ferritin level under 50 needs supplementation. I contacted my dr's office who agreed to test my ferritin as well as overall iron and a CBC (see last paragraph as to my reasoning). When I went in to get the lab slip I gave the info, the actual hard copy about the ferritin, to the front desk for them to give her. I don't know if they did so but I can't say they didn't either.

My lab results came in the mail today stating only that my levels were normal. I left a message with the dr's office asking what the specific numbers were, and got a return message that my ferritin was 40 and my hemoglobin was 13.1. So, I left ANOTHER message stating I'd like to "self-supplement" my iron and would like a call back.

I have a feeling they'll tell me I need to come in for an appt. Sigh.

I also decided to wean myself off of my fluoxetine (Prozac) to see if that helps (I've heard that this antidepressant exacerbates RLS symptoms). I've been taking it for Premenstrual Dysphoric Disorder and it's been helping my severe pre-period crabbiness (sorry guys) but my RLS symptoms kick in big time about a week before my period anyway. I'm also frequently unable to donate blood because my iron is borderline low.

All of this makes me think low iron/ferritin. Any ideas for a response to my dr's office if they "fight" me?

[D4]

I saw someone mentioned needing a serum ferritin level of over 100.

I last had mine tested at Mayo Clinic in June. I see the head neurologist of their sleep disorder clinic. Mine was 76 and he said that was fine. (I have had low numbers in the past.)

[ViewsAskew]

Each doctor thinks something different: 40, 50, over 100....all have been thrown out there. No one really knows yet (not enough studies) what is the most helpful, just that it definitely needs to be higher than 8 or 12 or 16 numbers that many of us have!

I can't imagine your doctor's office fighting you especially because you can easily take over the counter iron. What can they do?

Regarding the fluoxetine - tough call. Yes, some people get worsened RLS when they take ADs. But, many do not. If you are getting a lot of help from it AND if your RLS is under control, it might not be worth switching. If the RLS is not under control, it makes it more tempting, but again, what is the cost to you by giving it up? You might find that the next AD works as well for you and doesn't cause RLS problems or that it doesn't make any difference to the RLS at all.

To me, these are really tough decisions to make.

[Aiken]

I think what most people are told by Doctors who know what they're talking about usually runs along these lines:

If you have RLS, try to keep your ferritin at least at 70 or so.

If you still have RLS symptoms at 70, see if you can get it to 100, and see if that makes any difference to your symptoms. If not, chances are good that your issues are not strongly linked to low ferritin.

Going much over 100 should not be done without a doctor's permission, as it is possible to damage muscle tissues (including your heart) with excessive iron intake. However, one person has reported success at 150, so it would still be worth discussing with your doctor, especially if you did sense some minor lessening.

That's a paraphrased summation of about twenty different pieces of advice I've been given over the years. YMMV with your doctor(s).

[satipler]

I plan to start taking iron, 325 mg, this weekend and see if it helps after a month or so. I'm also going to stay off the fluoxetine and see if that helps as well. There's another side effect that I'm not too happy about anyway (TMI for the forum)

I don't think my dr. is fighting me on this, I just was hoping for their "blessing" on taking it. They suggested I try the minimum dose and go from there.

I'll keep you "posted"!

Smiles,
Suzi