Serum ferritin level, iron tablets and thyroid medication

[Yankiwi]

Many posts in the discussion board recommend getting our serum ferritin level checked and that what's considered normal for most people is not normal for those of us with severe RLS.
I had a regular check up today and asked my GP to check my records for my serum ferritin level as the last time he just said it was “normal” and now I know that isn’t an acceptable answer for me. Mine has been in the mid 50s for several years.
I take 125mcg of Levothyroxine because I had my thyroid removed years ago due to goiter. When I asked my GP about taking iron tablets he said iron reacts with thyroid medication and as long as my serum ferritin level is in the 50s I might not want to go through adjusting my thyroid medicine which could take a while. My RLS is under control, sort of, by not sitting in the evening, taking a low dose (.25mg) of Ropinerole nightly, tramadol and, recently, magnesium which seems to help a little. The medication is complemented by reading and stretching for 15 - 30 minutes each time I get up in the night. I can usually get back to sleep fairly easily.
I take 60mg of codeine on car trips over 45 minutes and in the movies.
The point of this post is--if you take thyroid medicine, see your doctor before starting to self treat with iron tablets.

[Rustsmith]

Yankiwi, thanks for pointing this out. I have had three different doctors in the last six months review everything that I take and none of them pointed to this interaction. I was put on Levothyroxine at the earlier this year and nothing was said about an interaction even though each of my doctors was also checking my ferritin level and therefore knew about my iron sulfate supplements. As a result, I have been taking my Levothyroxine and iron sulfate together each morning since both are supposed to be taken on an empty stomach. When I looked at this issue on line (now that I know what to look for), I also found an article about coffee and Levothryoxine. You can now imagine what I just washed my Levothryoxine, iron and vitamine C tablets down with just before I saw your post .

[Yankiwi]

Sometimes young doctors are best. They are up on the latest information and still enthusiastic. I'm lucky to have a young GP right now who is also clued up with RLS. He told me a lot of his patients claim to have it but they don't, they have different issues. He knows I do have it and works with me. I go loaded with Clinical Management and printouts of relevant information. Ever since Requip started to advertise on TV there are probably lots of people who jump on the RLS bandwagon unnecessarily.

[badnights]

I think that's why stuff "works" for some people but not others. Honestly, I think some people who are helped by some things might not actually have RLS/WED. But it's really hard to tell without being able to question them closely about their symptoms.

The point about interaction with thyroid meds is a very good one to know about, especially for us as moderators. I don't believe we ever recommend self-treating with iron without seeing a doctor first, but it's illuminating that a lot of doctors - Steve's, for instance - don't think of or know of the interaction.

[ViewsAskew]

Excellent discussion.

[barbls]

I have just started taking sinemet for Rls. (Diagnosed about 2 months with Rls) I also take thyroid medication and high blood pressure meds. I am so confused about all the different drugs and I live in small town where their is no neurologists. I called gap today to tell him I am experiencing some Rls in evening now after sitting at my computer. He is upping my sinemet and told him I wanted my iron levels checked. Any suggestions?

[Yankiwi]

Sinemet is not usually prescribed for regular use as augmentation is common with it. From my experience it worked great for car drives and movies as it works fast, but for regular use it caused augmentation (symptoms earlier in the day, among other things) after only a short while. You probably don't want to increase your dosage, it would probably make things worse. If you've just started taking sinemet it might be a good time to stop and start with something else.
Amazon sells a very good book "Clinical Management of Restless Legs Syndrome, 2nd edition". I bought two copies and gave one to my GP but it's good enough to just have one that you can take to appointments. It's written for medical professionals but the layperson can understand most of it.

[Polar Bear]

barbis = exactly what Yankiwi said....... Sinemet is not for long term use. Upping your dosage may help in the very short term but you need to get off it.

Regarding getting your iron levels checked - It's your ferritin serum levels in particular that you need checked.
. It is a blood test that is not normally done with routine blood works and you need to ask for it. This tells the level of iron stored in your brain – and that is what is important to us sufferers of WED/RLS. We need a level of around 100, especially if we are taking a DA drug such as pramipexole or ropinerole. Sinmet is also a DA medication. When getting the results of this test please ask your doctor for the actual level = do not accept ‘normal’ as an answer. Doctors and Labs may consider 20 to be normal… but it isn’t normal for us.

Having no neurologist in your small town - you may not be missing much. Some, even the self claimed RLS experts, are not as good as they think they are. However, if you find a doctor who knows the condition, be it a neurologist or your everyday GP, make him your forever friend. My neurologist was hopeless but my GP works hard with me using the Clinical Management book mentioned by Yankiwi i.e. Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the second edition.