Normal people iron vs RLS iron levels

[SkyCop]

Hiya All! I finally found a Dr to give me a series of iron infusions and it was such a life changing treatment. Sadly, that practitioner is no longer in my area and I need to let the new Dr know that my iron treatment is not for anemia. I should be due for another infusion soon but have a question for y'all about what ones iron should be. The scale says that normal range should be 37-170 but what is the optimum range for those of us with RLS? I find that many practitioners use anemia guidelines instead of understanding that RLS is a different diagnosis. Thx in advance

[Munroist]

Hi, advice differs but the minimum recommended is normally 100 µg/L. The Mayo Clinic Algorithm recommends infusions for people under that value and because it's hard to raise your ferritin much higher using supplements. However some people find more benefits at higher levels such as 200-300 µg/L which most haematologists won't have a problem with. The ranges quoted on the results of blood tests are not recommended ranges, but are more to do with what the lab can test so should not be used as a guideline. There is some useful information on the one page guide for iron therapy half way down this page:

rls-uk.org/useful-resources

mayoclinicproceedings.org/a...

[SkyCop in reply to Munroist]

Thank you! I saw the article cited serum iron as 100-300. I wonder how many of us only see lessening of our RLS symptoms at the higher ranges. Since my last infusion my serum iron has dropped to 117 and I am really suffering again. Would like to hear more about others' experiences about what iron levels they get relief... Thanks again for the article. I will print it for the Dr.

[SueJohnson in reply to Munroist]

Actually Mayo recommends iron infusions for ferritin 75 to 100 and supplements below 75.

[Munroist in reply to SueJohnson]

Indeed they do, but it's a ridiculously small range and means you can never have an infusion if your ferritin is over 100 or under 75 even though we know some people do benefit from higher levels, and some struggle to raise it over 25 with supplements. When I emailed Dr Buchfuhrer about it as one of the Mayo's authors he acknowledged that and explained that it was a compromise to find something which all parties were happy to sign up to. He also said "I have patients who do not get enough iron in the brain unless their serum (blood) ferritin levels are greater then 100, 180 and even as high as 230. We can only determine this value by infusing iron then checking serum ferritin levels when patients start complaining about increased RLS symptoms (then seeing that another iron infusion resolves the symptoms). Some experts worry about iron overload which accounts for the caution and the lower recommended doses. We often get ferritin levels as high as 400-500 without such issues."

[SueJohnson in reply to Munroist]

It also says they can be given if ferritin under 300.

[Graham3196 in reply to SueJohnson]

Hi Sue I hope you an help me. My latest doctor wants me to start on Statins to control my cholesterol. My cholesterol has increased slightly but she has a pretty computer program that converts data you enter into probability of a stroke. By this program as I age my tolerance to some cholesterol reduces so if she enters my data I have an 11% chance of a stroke, presumably in a year or some time frame. But if everything remains the same except she reduces my age then the risk drops to around 3%. This is why she wants to reduce my Cholesterol to keep the risk down to below something like 3% as my age relentlessly increases the risk. Sounds good but I have no idea if the program has any validity.

She gets a tick as an RLS doctor because she gave me an infusion and she carefully read the Mayo clinic algorithm report. I have resisted because I have read that statins reduce the absorption of iron. She says that's incorrect so I did a quick search of the internet and couldn't find any support for this interference effect of statins. Given the choice of RLS or an 11% chance of stroke is a hard decision. But next year it might be 20% so I have to take action now if its needed.

Can you give me a good reference to this?

You have mentioned some alternatives. Are these alternatives equal in terms of side effects and effectiveness?

Thank you. Its nice to have a knowledgeable advisor available.

[SueJohnson in reply to Graham3196]

I' have to go to bed now so will look at the iron tomorrow but I assume you meant this on the statin alternatives: Nexlizet (Nustendi) is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) reduces cholesterol although it doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS. And then there are Triglide (Fenofibrate, Fibricor, Lipantil, Lipofen, Supralip) and Bezafibrate (Bezalip) which are not statins which seem safe. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.

If you take gabapentin or pregabalin you should be closely monitored as it can raise the bad LDL and lower the good HDL.

[Graham3196 in reply to SueJohnson]

Thanks Sue.

[SueJohnson in reply to Graham3196]

I haven't found anything that says statins affect the absorption of iron.

[Graham3196 in reply to SueJohnson]

Thanks for looking.