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Punky Brewster

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Punky Brewster Newbie

I have RLS. I have tried Mirapex And Requip. These drugs had terrible side effects from insomnia, nausea, vomiting and headaches. My neurologist now has me on klonopin 1 mg. 2 times daily at my request. Now I am sleeping and the RlS is subsiding.I recently saw my primary physician and requested iron levels be tested along with other tests that are done every 6 months. Dr. called me today with my results.Everything was in range except the iron that is stored in bone marrow was low. I believe she said level was 8.Any ideas?


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mushroom Proficient

Hi, Punky. I am wondering if you have any other symptoms of celiac disease besides RLS and low iron. In case you are not familiar with all the symptoms here are a couple of sites to check them out (there are many more if you do a google):

For symptoms see: Open Original Shared Link

Open Original Shared Link

See if you can find yourself somewhere in here.

If I were you and could put forth a case for it, or even on a whim, I would ask my PCP to do the initial testing. Just ask her if she would run a celiac panel on you (make sure she includes total serum IgA and DGP). If these are negative then she probably won't' refer you to a GI unless you have a PPO plan where you can refer yourself. But the GI's tend to be rather imperious and know-it-all and it is hard to find one tht knows a lot about celiac (or knows as much as he thinks he knows :P ).

Anyway, read through the symptoms and see if any of it applies to you. Google for extra sites and read all you can about it so that you can arm yourself for a doctor's visit where you ask for the testing. It is sthe only way to know. If the testing comes back negative, then try going gluten free (you don't need a doctor's permission) and see if it helpsl :)

cassP Contributor

im assuming your stored iron in the bone marrow is FERRITIN... and if yes, 8 is WAY tOO LOW, and could most definitely be causing your RLS. now, why do u have the LOW FERRITIN?? could it be Celiac? do u have Hashimoto's Hypothyroid?? (both these diseases impair your digestive system's ability to absorb iron)... or do u have any kind of bleeding disorder?? Fibroids??

my bff's Ferritin was 6 or 7, she had really bad RLS, pica, hair loss, fatigue, etc... and she had enormous fibroids that had to be removed.

my ferritin was 11.. and i had fatique, hair loss, and could not tolerate my thyroid meds at all ( i have both Celiac & Hashimoto's).

you should aim to get your ferritin between 50-90.. and iron 70-80 ( i think)... dont supplement too fast like i did.. iron above range can be dangerous too.

& i agree w/Mushroom- i actually just asked my PCP to run a Celiac panel... she asked me why- and i told her about all my digestive crap. i was lucky she ran a complete panel, as i didnt test positive on ALL the antibodies..

good luck to u!

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