Foundation Webinar on Co-morbid conditions

For everything and anything else not covered in the other WED/RLS sections.
Rustsmith
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Foundation Webinar on Co-morbid conditions

Postby Rustsmith » Sat Apr 13, 2019 7:52 pm

For those of you who are members of the Foundation and who did not listen to the Foundation webinar on Co-Morbid conditions presented by Dr. William Ondo, I highly recommend spending the time to listen. He only discussed seven conditions, but a number of his side comments about RLS provided information that I have never heard before. I need to go back and listen again, but one of the conditions was iron deficiency, as in anemia. I think that I heard him say that there was a connection between age of RLS onset and the chances of having high ferritin levels and still having RLS (like me). Another few bits of trivia was that for kidney patients, RLS correlates to dialysis and not the actual kidney problems, that the RLS goes away with a kidney transplant and that having RLS during dialysis is a pretty good predictor of mortality without a transplant.

Essential tremor was interesting because it does not correlate well with RLS but RLS is far more likely to occur with essential tremor. Both are genetic, but they haven't ID'd the gene in common yet.

As for the conditions discussed, they were 1) iron deficiency, 2) kidney dialysis, 3) pregnancy, 4) Parkinsons, 5) multiple sclerosis, 6) essential tremor, and 7) neuropathy.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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suttmes69xx
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Re: Foundation Webinar on Co-morbid conditions

Postby suttmes69xx » Mon Apr 15, 2019 3:48 pm

I agree that this was a really informative webinar. However, I am a little confused. It is my understanding that most RLS patients have low Ferritin levels in the brain. I have heard discussion that our Ferritin levels should be over 100. But Dr. Ondo said that Ferritin levels can be artificially elevated by inflamation,infection, renal functions etc. So how does one know if one has low ferritin levels in the brain, if blood test s may show artificial readings?
Shelly

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Re: Foundation Webinar on Co-morbid conditions

Postby Rustsmith » Mon Apr 15, 2019 5:43 pm

You are confusing two different chemicals. Dr Ondo showed the ferritin structure. It is a spherical protein that surrounds something like 120 iron atoms. Ferritin exists in the bloodstream and is a measure of total iron stores throughout the body. The problem that we all have in common is that the levels of iron (think atoms) in a specific part of our brains is low. This is not the same thing as ferritin in the bloodstream. Ferritin is used as a very poor indicator of iron in the brain. It works reasonably well for some of us and is totally ineffective for others. The problem is that there is no easy way to measure iron levels in the brain of a living person. Research is just starting to come up with ways to do this, but it currently requires very specialized, research grade equipment such as super powerful MRI machines that are not the same thing that is used at your local hospital. They can also measure the iron levels in cerebral-spinal fluid, but this requires a lumbar puncture and there is far too much risk involved to do this as a routine procedure for RLS.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

suttmes69xx
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Re: Foundation Webinar on Co-morbid conditions

Postby suttmes69xx » Mon Apr 15, 2019 8:39 pm

Thanks for your reply. But I am confused. If what you say is true, why does the Paper put out by RLS.Org -Understanding Iron & Restless Leg Symdrome- (along with so many other articles talking about relationship between RLS and low brain Ferritin ) stress the importance of testing blood iron. I quote: " Iron deficiency without anemia has been associated with increased fatigue, depression, cognitive impairment, decreased work capacity, and also RLS. ..Currently the best guide to body iron stores is the serum ferritin...e other indices like serum iron level, total iron binding capacity, and percent iron saturation may be of value in concert with the serum ferritin, as these factors are sometimes less affected by the inflammation or infection. Your serum iron level will increase significantly within 15 minutes of taking iron-containing food and will vary by nearly 50% from the morning to the nighttime level. erefore a fasting, early morning blood test is recommended in order to improve the interpretation of the results..Based on current research, it is recommended to treat patients with iron supplements whose ferritin levels are less than 75 ug/l, with the goal of getting the ferritin above 100 ug/l. e serum ferritin, iron,TIBC (total iron binding capacity) and percent iron saturation should be checked every three months until the goals are reached.
Once you have reached your ferritin goals, whether you should remain on iron at a lower dose than initially used, will vary from individual to individual"

A prrevious webinar I saw also talked about the importance of increasing brain iron by taking iron suppliments or transfusions. If brain ferritin is not the same as iron in the blood stream, why do so many experts talk about the importance of getting your iron levels up over 100? I'm not trying to be diffficult, just to understand.
Shelly

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Re: Foundation Webinar on Co-morbid conditions

Postby stjohnh » Mon Apr 15, 2019 9:03 pm

The ferritin test is really only helpful if very low (less than 20). In that case there is a fairly good chance that an RLS patient may get some releif by taking oral iron. For those with a ferritin between 20-100, there is some chance that oral iron will help. For those with a ferritin over 100, there is virtually no chance that oral iron will help. Oral iron has a very strong regulation system so that if the ferritin is somewhere between 75-100 virtually none of an oral iron tablet will be absorbed.

All, or nearly all, people with RLS have low brain iron. The problem is that there is currently no good test for brain iron. Doctors are very worried about excess iron in the blood, it causes lots of bad stuff, so if a person with RLS has a ferritin over 100, almost no doctor will give iron treatments, even if the doc knows enough about RLS to know that the patient's brain needs more iron. It appears that for most people with RLS the low brain iron occurs because the transport system moving iron across the blood-brain barrier is defective, but for those with very low ferritin, it may be because of just not enough iron.

What we really need are two things, a good test for brain iron, and a drug that causes more iron to move from the blood to the brain. We are coming closer to a good test for brain iron. Drugs that can increase transport of iron from the blood into the brain are likely 10-20 years away.

All this is the reason the International Restless Legs Syndrome Study Group has recommended that IV iron therapy be moved to a first line treatment.
Blessings,
Holland

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Re: Foundation Webinar on Co-morbid conditions

Postby ViewsAskew » Mon Apr 15, 2019 9:19 pm

Ferritin in the brain is the issue - that is where it is low for us. The only really accurate measure of the ferritin in the brain is to test the cerebrospinal fluid, as I understand it. Very expensive ($3000 to $5000!), painful. Somewhat dangerous. So, the only thing we have is a serum blood test of ferritin. While ferritin is almost assuredly low in the brain for those with RLS, it may or may not be low in our blood stream. If you put it in the blood, it may or may not reach the brain. Hence the test not being perfect for us, but all we have at the moment.

For example, people with too much ferritin (haemochromatosis), still can have low ferritin in the brain. https://jnnp.bmj.com/content/76/7/1009

Does that make sense?
Ann - Take what you need, leave the rest

Managing Your RLS

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Rustsmith
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Re: Foundation Webinar on Co-morbid conditions

Postby Rustsmith » Mon Apr 15, 2019 9:33 pm

Ferritin and iron are not the same thing. The iron in the brain probably doesn't exist a ferritin. It exists as simple iron. You can think of ferritin as a cargo ship that carries lots of iron around the body and some of its load of iron can end up in the brain. It also supplies its "cargo" of iron to other organs around the body. It is this supply to the other organs that causes the concerns about ferritin being too high that Holland has mentioned.

Since it is not currently feasible to measure iron in the brain, doctors had to search for another measure that has some correlation with brain iron, even if the correlation isn't a good one. The one that has been selected is the level of serum ferritin, which measures the amount of the ferritin proteins that carry iron in the blood. Other "easy" measures of iron, such as serum iron, a measure of the iron in the hemoglobin, simply don't appear to correlate well with RLS. That doesn't mean that ferritin works well, it is just not as bad as the others.

As for the other blood tests for iron, the main reason why these need to be done is to determine whether there are other things going on that are causing the ferritin levels to be out of whack. Very low serum iron (anemia) would cause low ferritin because the hemoglobin gets first shot at any iron that is ingested, but anemia is a totally different and much more important issue. As mentioned earlier, infection elsewhere in the body could cause ferritin levels to be high, but this would also cause issues with the TIBC and iron saturation values.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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suttmes69xx
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Re: Foundation Webinar on Co-morbid conditions

Postby suttmes69xx » Tue Apr 16, 2019 1:25 am

Thanks to all. While searchng for more information, I found 2 helpful videos when asking " is there a link between iron levels and RLS?" The videos are by Dr. Richard Allen who apparently works with Dr. Earely out of John Hopkins. His work seems to indicate that there is valuable information to be had if one tests 4 iron indicators in the blood: https://www.rls-uk.org/news/rls-and-iron
Shelly

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Re: Foundation Webinar on Co-morbid conditions

Postby badnights » Fri Apr 19, 2019 6:16 am

@ suttmes69xx: Richard Allen is the god of RLS-Iron thought :).

Re ferritin in the blood: the test is done even though it's not exactly reflective of brain iron levels because if blood ferritin is low, you can be sure there is a problem somewhere - a deficiency somewhere; and since you have WED/RLS, the problem is likely in the brain. However, if blood ferritin level is high, you don't know if there's a deficiency in the brain or not.

holland wrote:Oral iron has a very strong regulation system so that if the ferritin is somewhere between 75-100 virtually none of an oral iron tablet will be absorbed.
I know that's the standard dogma but my experience seems to refute it a bit. My ferritin level hovers around 120-130 and I keep it there by taking 3x65 mg Fe (as ferrous sulfate or fumarate) every night. I have dropped to two tablets, dropped to one, dropped to every second day; in every case, my symptoms worsen after 2-4 weeks, and improve a similar amount of time after resuming the usual dose.

I know that evaluating the severity of my own symptoms is a subjective measure, but in my own mind, anyway, I am convinced, because two or three of those times, I was not even aware during the decreased-iron phase that I was on decreased iron. Not because I hid it from myself, but because the events were years apart, and I'm slow and stupid and completely forgot each time until I'd been suffering for a week or more, and trying to figure out why. I can't do that anymore because I'm hyper-aware of the potential for increased symptoms if I stop.

I mentioned this to Earley and Allen at the symposium and neither of them seemed surprised. It was Earley who was doing the talking, and he said, more or less, "that's kind of weird but not impossible". (They also agreed I was a candidate for IV iron, in their eyes. What a bitter thing that the people I have access to here don't agree.)
Beth - Wishing you a restful sleep tonight
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stjohnh
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Re: Foundation Webinar on Co-morbid conditions

Postby stjohnh » Fri Apr 19, 2019 1:25 pm

Beth, Standard reference ranges in medicine are usually defined as the numbers within two standard devations from the mean. This means that 2.5% of NORMAL people will have result that is higher than the reference range and 2.5% of NORMAL people will have a result that is lower than the reference range. That you manage to get your ferritin to 120-130 with oral iron is a little unusual, but not terribly surprising.
Blessings,
Holland

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Re: Foundation Webinar on Co-morbid conditions

Postby Rustsmith » Fri Apr 19, 2019 1:53 pm

Holland, in that case, I am one of the really low probability outliers (which wouldn't be the first time). I started out with a ferritin level of 42 and started taking oral iron 3xday. When my ferritin got up to about 150, I dropped back to just 1xday. Over the next several years, my ferritin level increased to about 350 and hovered there for a while and then it jumped to 600. Six months later it was 650 and I was advised to stop taking iron. My neurologist's statement was that I wasn't showing any outward signs of hemachromatosis other than the "normal Colorado golden glow", which comes from living at altitude in a desert area and spending as much time as I do outside walking.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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Re: Foundation Webinar on Co-morbid conditions

Postby stjohnh » Fri Apr 19, 2019 2:16 pm

Steve, Yes if you are otherwise normal, a ferritin of 650 would be a super-outlier. More likely, your elevated ferritin has another explanation, most likely age+chronic inflammation. Have you had any tests for chronic inflammation? The most common basic tests are ESR and CRP, but there are a variety of more sophisticated inflammatory markers. Another possibility is a genetic abnormality of ferritin or ferritin control.

Here is a helpful article on elevated ferritin and its significance and evaluation:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3093720/
Blessings,
Holland

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Re: Foundation Webinar on Co-morbid conditions

Postby Rustsmith » Fri Apr 19, 2019 4:12 pm

Holland, as I indicated, this wouldn't be the first time that I was an outlier. To start, my normal BMI is about 19 and I have an inability to gain weight, not matter my diet. When I was first married, my wife thought that there was something wrong with her cooking because I was always raiding the refrigerator. Then she realized that most of my family are thin, but just not to the same degree as me.

Then while I was running marathons, I was constantly getting ill near the end of the race. I thought that it was due to dehydration, so I tried drinking more sports drink during the run, but that didn't help. So, I volunteered to be a test subject in a hyponatremia study. Interesting process. I did get ill in that race. About a week later, the doctor in charge of the study emailed me to let me know that I did finish with hyponatremia, but that I was also dehydrated. She threw me out of the study because they were looking for people who had been drinking too much. The study was never published. But later I found where the results from our group had been added to a number of other studies. Out of about 2200 subjects, only two had clinical hyponatremia AND dehydration, so I could pick out my datapoint on the scatter chart and it was an outlier by a signifcant sigma.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

stjohnh
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Re: Foundation Webinar on Co-morbid conditions

Postby stjohnh » Fri Apr 19, 2019 4:30 pm

Sounds like you may have a genetic mitochondrial abnormality.
Blessings,
Holland

Oozz
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Re: Foundation Webinar on Co-morbid conditions

Postby Oozz » Wed Jun 26, 2019 4:27 pm

Is there a way we can view this webinar? I wasn’t able to find a link to it on the foundation website.


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