Hello, quick update before I try the dreaded bed time 🙏🏻
So the iron results.....
All she could tell me was “normal” when I questioned my ferritin levels all she said was TIBC was 50% and trans saturated 27.9 so was does this mean???
Now down to 3mg of ropinorole and seem to be coping with the help of magnesium citrate and arnica gel on my legs before bed oh and 60mg of codine.
Hope everyone is making progress x
What about the report in 2013 by Dr. Richard Allen, PhD from Johns Hopkins who said the latest studies for the etiology of RLS is too much glutamate in the brain's thalamus? I went back expecting a 'miracle' and instead was told I would be taking methadone for the rest of my life or a drug very similar to Gabapentin. One more band aid 'treatment' hits the dust. I can't tell you how disappointed I was. Why is research not being directed to removing the excess Gutamate instead of just suppressing the symptoms?
Because “excess glutamate” itself is not the cause, There is excess glutamate in a certain location ( I always forget: post - or presynaptic in the brain cells). The best hypothesis there is so far, is brain iron deficiency (BID) causing a reduced number of specific receptors on the brain cells. Receptors function kind of like a watchman at the door , selecting who and how many - in this case neurotransmitters - get admitted to enter or leave the cell. And this alters the BALANCE of our neurotransmitters.
What causes the BID or how that exactly causes the low number of receptors is still not known. Unfortunately.
You asked for ferritin levels, you should get ferritin levels - a number.
Demand the number, you are paying for it, it is your property.
This makes me angry, you are absolutely entitled to full information. Period.
Here is the RLS Foundation talk on iron by Doctor Christopher Earley.
Recent research has found that the gut microbiome can produce neurotransmitters and cause low iron uptake. Many of the microbiota feed on sugars, so often symptoms of rls derease when people go on a zero sugar, low calorie diet.
Keep that mantra going - NO SUGAR! More and more this is a gut issue. It is the only explanation of HOW I could have become Iron deficient causing the RLS. I'm getting ready to go full on Keto/Paleo in the near future. I'm trying to ease into it.
Good luck, though removing one trigger may reveal another, like my E202 issue. p.s. when giving up sugar, it helps if you like spicy food, so that you can get an alternative 'taste hit'. I haven't investigated whether spices cause a dopamine release like sugar though.
The keto diet is a passing fad leading to poor git microbiome and other health problems.
businessinsider.com/is-the-...
It is hardly a passing fad. The article mainly targets longevity - not a bad thing, but also... " Some benefits of going keto are difficult to dispute. Following a high-fat, low-carb diet can be a solid strategy for rapid weight loss and blood-sugar control. The keto diet can also be great for children with tough-to-control epileptic seizures. For decades, people have seen stellar results managing those conditions on a keto diet with the help and guidance of professionals." The connection to epileptic seizures is interesting and the connection was recently discovered to be caused by changing the microbiome when in ketosis. Gut bacteria developed that can control the seizures.
livescience.com/62659-keto-...
It is curious to note that Gabapentin is an anti-seizure medicine used "off-label" for treating RLS.
I would concur that Paleo/Keto is not the "forever" diet. I remember reading the China Study some years back with the indictment of meat in the diet. Keto is a "metabolic trick" and I would use it or anything to control my RLS and Sleep issues. I still consider myself athletic so there are variations in the Ketogenic Diet that can also be used.
I keep coming to the same conclusion. It all goes back to the gut! even Iron therapy is only addressing a symptom. But what is causing low Brain Iron levels? It would seem to be the gut. And it makes sense of why what we eat affects our RLS symptoms so much. Whether it's SIBO or leaky gut or whatever, I think the answers we are all seeking lie there.
Also if you take a broader look at what we've done over the past 50+ years, with Antibiotics, and our low fat, high sugar diets, it makes sense that our gut's microbiome is totally off kilter. Not to mention all the additional neuro-toxins we have introduced into our bodies from immunizations and pesticides and even drinking fluoride in our water. No wonder we are experiencing neurological problems!
Now the question remains how do we fix it or reverse the possibly generational damage we've done to our bodies.
I agree. Our diets have changed much faster than our bodies can adapt, which is a multi generational thing. Interesting to read on a SIBO website that it can cause poor uptake of minerals, especially iron, so iron deficiency may be an indicator as much as a cause.
The problem with this crazy disorder is it’s so different for everyone. The only food that triggers my symptoms is beer, so I think it must be the hops. Other alcoholic drinks don’t, sugar doesn’t. Nothing else does. So if a Dr. used me as an example, she’d have to be looking for something else. Iron - I’m working on that to see if raising my ferritin level affects the symptoms. I’m considering keto/paleo also for my general health, not for my RLS. If it helps my RLS, wonderful. I’m finally sleeping, and for me, that and backing way off Mirapex (Pramipexole) are the miracles that have reduced my symptoms. My case would suggest that lack of sleep is the primary cause - though I know that’s not the whole story.
The range of normal iron levels is from 400 down to 10.
My level of iron is 21. Recently I saw a consultant who asked me to bring my iron level at least to 100.
She advised to take Spatone Liquid Iron which I bought from The Boots. It is helping me with all my symptoms oh RLS, fibromyalgia and chronic fatigue..
here seem to be lots of different "normal" ferritin levels. The Path labs around the world can't even agree on this starting point. In Australia one of the major Path lab "chains" state the normal range to be 35 to 500. I think normal doesn't matter too much we know now that raising the ferritin level disappears the symptoms in many patients. Some symptoms go away at 100 while others at 200 and the last at 300+
There seems to be no logical reason why we don't just raise the ferritin level to 350 and then if your symptoms are gone then you are in the lucky bunch and if they are not gone then we might be able to conclude that raising ferritin level is not going to help you. If this happens to me I will try to get someone to give me an infusion to raise ferritin to 500 just to see what happens. I think I'll stop there until I get advice from an expert I trust to say its safe to go higher. I hope 300 will fix my problem.
For those who haven't seen the following quote from Doctor Buchfuhrer I repeat it here.
20Jun18
We have learned a lot about iron absorption and iron therapy for RLS in the past few years.
When we quote the goals for iron therapy, it is based on only 2 studies that showed a benefit from oral iron therapy when the serum ferritin is brought above 50-75. That was the guidelines for those studies and they did not look to see if higher levels brought further relief of RLS symptoms. Furthermore, it is very hard to get serum ferritin levels much above 100 with oral iron therapy.
Now that we have been doing iron infusions for RLS for a few years, we have gained additional knowledge. We find that some patients need to get their ferritin levels above 200-300 in order to drive enough iron into the brain (the best way to find out how much iron gets into the brain would be a spinal tap but that is of course not something we would do very casually or routinely). However, we would recommend keeping the ferritin level no higher than about 350 in order to avoid issues with iron overload which could effect organs like the liver, kidneys and heart. Therefore, an iron infusion with a goal of getting your ferritin between 250-300 could be very helpful. You should also be aware that only certain iron formulations (INFeD and Injectafer) are beneficial for RLS patients.
Ferritin tests can be fairly reproducible (and it is likely not a lab problem that causes variation) but must be done fasting without any excessive iron intake for the previous 24 hours. The other issue is that ferritin is an acute phase reactant so it may stay falsely high for as long as a month after inflammation (such as a bad cold). A low ferritin is always an accurate result while a high level could be falsely high.”
When this knowledge eventually filters through to the GPs then RLS patients will start with an iron infusion and maybe 80% will have no further symptoms. In the meantime we have to wait months and fight for an iron infusion!! Very annoying!
Those are pretty cryptic numbers. TIBC should be a number, not a percent. My Ferritin was 49 - raging RLS. Docs said normal - no idea what was going on. I found out myself from the Johns Hopkins website "A study has shown that in patients whose serum ferritin was < 75 µg/l, oral iron therapy (325 mg ferrous sulfate twice a day on an empty stomach) on average improved RLS symptom after 3 months." Iron tests should be after fasting to be accurate. Here's a pretty good write up of what the tests mean. healtheiron.com/iron-tests
I always ask for, and get, a copy of the complete pathology lab report and put it in a file so I can track what's happening and look for changes. I like to make sure that someone has a history of my condition. I am sure that if you say you really want your own copy then your doctor will give you a copy.
Owe numbers don't mean much by themselves. You need to push your doctor to tell you your ferritin level, which is by far the most important number from your blood test. For most people, ferritin levels around 50 or so would be fine, but for those of us with RLS, we usually need to get ferritin up over 100, and for some of us, upwards of 300 or more.
Here is a link to the latest gold-standard publication on iron treatment for RLS, written by a number of well-expected RLS experts. It's dense, but it is well worth the effort to read it through. It discusses the high ferritin levels we need, and when to use oral vs. intravenous iron infusion therapy. You might consider sending this link to your doctor, as I did. Good luck!
My late Mother & RLS
Iron Infusions
Iron Panel Results High
Iron Infusion 
