Elevated Iron

[Nikita]

Howzit gang!

Brief history,
My family has a strong hereditary link for RLS, going at least back to my grandmother and continuing to our kids. Recently, due to other issues, I had iron tested and the Ferritin level was 501. I did test positive as a H63D carrier, but that shouldn't be the cause. We are looking more into it, but my question was more related to the low iron levels reported.

Is it low stored iron or low iron in the blood that seems to be more related to RLS? My hemoglobin was borderline low. I'm going to start a low iron diet, I have to, but I was wondering if it may increase my RLS symptoms. Are there any medical reports about this?

It's odd I know. I never knew how to be normal.

[ViewsAskew]

It works both ways. Low stored iron (ferritin) is associated with WED/RLS. BUT, other people with hemacrhromotosis have WED, so we know that it's not a requirement.

But, any time you have low hemoglobin, secondary WED is often the result.

Increasing your iron shouldn't ever increase WED symptoms. The problem is that increasing it doesn't always reduce them, either. In one study, several years ago, they found that 20% of people who increased ferritin had a complete remission of symptoms and 40% had a partial remission. But, that's only 60% helped - symptoms stayed the same for the remaining 40%.

[Nikita]

OK, makes sense. Just wondered if a low iron diet could cause anemic conditions and increase the WED symptoms. I have Mirapex, I can compensate, but I didn't know if I should expect to adjust. I have found that the more I know, the better I can help the doctors put all the pieces together and we can work out a plan.
The human body is fascinating, isn't it?
Thanks for your help!

[ViewsAskew]

OK, makes sense. Just wondered if a low iron diet could cause anemic conditions and increase the WED symptoms. I have Mirapex, I can compensate, but I didn't know if I should expect to adjust. I have found that the more I know, the better I can help the doctors put all the pieces together and we can work out a plan.
The human body is fascinating, isn't it?
Thanks for your help!

Do you know if there is a correlation between low-iron diet and low hemoglobin? If so, then, yet, it could inadvertently cause WED. I don't know much about low hemoglobin other than that drinking tea can contribute (a friend has had it and was told to stop driking tea).

I couldn't agree more about needing to know a lot to manager the doctors and create a plan!

The body is fascinating...I just wish it was a little less fascinating in regards to WED/RLS! Or rather, I suppose, less mysterious.

[Nikita]

Honestly, no, I'm really confused! I have high stored iron, but not high iron in the blood. Red blood cells are usually normal and hemoglobin is low normal. A low iron diet is not well mapped out, a high iron diet is easy to get info on. I know what the recommended iron intake should be for a normal woman, but nutritional levels on packaging just gives a percentage for a 2,000 calorie diet. Iron needs vary for healthy individuals which it isn't based on calories and a percentage doesn't give mg. I do know the tannins in tea reduces the body's ability to absorb iron. Coffee helps too. But, of course, neither is good with caffeine for WED! Plus you add that there are two different kinds of iron, some absorption is affected by other foods, some aren't....(insert head exploding imagery here) I do have an appointment with a wellness coach, but I wanted to see what I could find out about the iron correlation with WED.
On a side note, my sisters have offered to do independent research with me. They offered to get some magnetic jewelry and toss me into a pool to see if I point north. My husband who is a musician, offered to learn Iron Maiden songs too! We believe that laughter is very powerful.
Thanks for your help! I agree, it is mysterious, but compared to the days when my grandmother had to pace nightly in agony because they thought it was all in her head and there was no diagnosis, I am grateful that we have made this much progress.

[ViewsAskew]

I do know that some articles have been written about hemochromatosis and WED/RLS. What I don't know is if your elevated iron stores are genetic hemochromatosis or there is a different cause. And, if you do not have hemochromatosis, then will the therapies developed for people with it work for you? This link, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2657669/, explains the percentage of people who have hemochromatosis vs other causes for high stored iron.

Here are some of the articles about hemochromatosis and WED - they may or may not apply to you:

http://www.sleep-journal.com/article/S1 ... 8/abstract - this one has advice in it.

http://www.ncbi.nlm.nih.gov/pubmed/11311689

http://jnnp.bmj.com/content/76/7/1009.full

I hear you about your grandmother - mine was in the same position. One time, in the 60's, she was put in a psychiatric ward because she tried to get help for WED. Now, THAT is crazy!

[Nikita]

Yeah, I didn't bring up hemochromatosis because I didn't test as a carrier for the C282Y. I am a carrier for the H63D chromosome, but that alone shouldn't be the cause. A little into that, the genetic testing only tests for the top three genetic mutations, and all are Caucasian. I am considered Caucasian, because my family is European, but we are Greek and Italian. The H63D is Mediterranean in origin (Ta Da!), but there are other genes that were not tested, that could be African in origin. My cousin had triple negative breast cancer, and that disproportionately affects African women, so I am comfortable thinking that there may be a genetic link there and am requesting testing for it. The problem is that all areas are not completely understood, so there aren't easy answers. Liver enzymes are increased mildly too. U/S and MRI do not indicate alcohol is a concern, I do work at a winery but I don't drink daily (WED takes care of that!). So that's the long story. I was kicked from the liver specialist to my family physician and now I am being punted to the Hematologist. I see her next week, but in the meantime, my doctor and I looked at all the data and decided to start a low iron diet to jump start a solution since donating wasn't possible and may not even be a good plan.
All of this is new research. No one quite knows about iron and WED, nor is there an exact label for what I have going on. There is apparent correlations, but that's about it.
Thank you for the links, it does help, especially to give to the doctor if it comes up.
I couldn't imagine what your grandmother went through! I am so thankful that we have the technology to prove what we are living with is real.

[ViewsAskew]

Do consider writing to the doctors at Johns Hopkins. If anyone in the WED/RLS community would know about high ferritin/low hemoglobin and WED, it would be them. They've done all the research on ferritin and WED. Dr Earley and Dr Allen were part of that team. Here is one of their articles: http://www.journalsleep.org/ViewAbstract.aspx?pid=26214

Dr Allen's email was: richardjhu at mac.com (written funny to prevent it from being copied electronically)- not sure it still is, but you could try. I bet he'd answer you if this is still his email.

[Nikita]

YOU SO TOTALLY ROCK!

Thanks!

[Nikita]

And I am ever so grateful for those hours in college pouring over medical journals and reporting on them for my classes. I never imagined that I would be using them and understanding them now, especially when back then, we had to go to the medical libraries to get them!

[Chipmunk]

It could be Anemia of Chronic Disease. I would get a SED test and C-reactive protein test to check for inflammation. Not to scare you but it can be an indicator of a serious underlying disorder, like cancer.

http://www.irondisorders.org/anemia-of-chronic-disease
http://www.irondisorders.org/Websites/idi/files/Content/854256/IOA%20ALL%202011.pdf

[badnights]

I am not sure if I didn't read carefully enough, and I apologize if that's the case. Do you have problematic symptoms other than WED? Does your wacky gene cause symptoms of any kind? Or is it just that your doctors think your ferritin is too high?

I don't know jack about it, really, but I do understand that WED patients have a completely different way of managing iron than non-WED people, and that higher ferritin levels can be OK in WED patients. Ferritin over 500 does seem high, though. Dr Earley mentioned in a webinar that he would not hesitate to recommend iron infusions for someone with WED whose ferritin was 200. Higher than that, he would investigate more, but 200 was low enough to be a no-brainer, more or less.

viewtopic.php?f=5&t=8439&p=68360
viewtopic.php?f=4&t=8476&p=69097

Straight from the horse's mouth (Dr Allen) would be even better, of course, but there's a link to the webinar slides in there somehwere