Genetic/familial RLS

[Dires]

Genetic/familial rls respond to iron in the same way?

Just found out that my sister suffers from rls and we feel that our father may have.

I have taken three months of iron with no improvement at all in fact, the rls is worsening. I am about to request a recheck of iron panel.

Just wondered, if the condition is genetic, would you expect it to respond to iron in the same way?

OR, is it the genetic component that causes the low ferritin etc?

Any clues?

[Madlegs1]

Good question.

My own case is genetic and I have experienced RLS for over 70 years.

Iron is not my problem.

At one stage my ferritin level was over 1500 and the thought I was haemocromatomic.

But I didn't test out on any measures for haemo.

I have found my biggest cause are triggers.

Of all kinds.

Rising agents-- biscuits, Crunchy bars etc.

Also beer with sulphate and any alcohol.

Processed foods like smoked meats, MSG ( that's a real humdinger and I could write a whole post on that alone!!!😝)

Ok - I'll leave it at that.

[Dires in reply to Madlegs1]

Thanks Madlegs 1

I know my Ferritin was low ( for RLS) at 50.

I eat a pretty healthy diet, very little processed food, I make my own bread, no caffeine after midday, I’ve cut out the red wine. I still have the occasional gin but late afternoon/early evening, not too near bedtime.

I just wondered if it was the genetic element that caused low brain iron and if so, does taking iron have any benefit?

[SueJohnson]

Only 60% of people with RLS have improvement with raising their ferritin over 100 and for some it takes raising it to over 200 or 300. Whether it is genetic makes no difference. I would get a new test to see what your ferritin is now. It still might be less than 100.

[Dires in reply to SueJohnson]

Thank you Sue, that’s all I wanted to know. I’ve got a retest in my plan.

I expect we all hope to be one of the 60% responders.

[Jumpey]

Mine is genetic. Low iron definitely makes it worse but high ferritin does not eliminate it sadly.

[Dires in reply to Jumpey]

That’s sad to hear unless you’re one of the 40% of non responders?

[Jumpey in reply to Dires]

I had an iron infusion but it didn't eliminate my symptoms.

[Dires in reply to Jumpey]

I’m sorry to hear that. We all must have hoped that a simple course of oral iron or an infusion would help. How are you managing your symptoms now?

[Jumpey in reply to Dires]

Wouldn't that be wonderful. I take oramorph nightly.

[DicCarlson]

I think our iron stores are like a coffee cup - nearly full, spilling over slightly - whatever the amount, that's you. Something happens - injury, triggers, gut dysbiosis, absorption problems - the level goes down. Less noticeable symptoms may ensue, from other deficiencies - magnesium, potassium, sodium - leg cramps, sleep disturbances. Then, when it's low enough RLS can rear it's ugly head! Iron is a big player in RLS and I believe the gut dysbiosis is a big deal with iron absorption. There is a connection with Small Intestinal Bacterial Overgrowth (SIBO) and RLS - again probably due to absorption issues in the gut. Everything is connected to everything else!

[Tankerville]

Hi Dires,

I've had RLS more or less all my life, (63 years) although only severe in the last 30 years or so. My father, brother and sister had/have it but not to the level that I have reached. I was seen at the John Radcliffe hospital in Oxford UK for brief (and dismissive) consideration for Deep Brain Stimulation some years ago. When they saw the familial connection they said that it would be a good idea to put RLS into the 1000 Genome Project and would follow up with a possible brief case study. Unfortunately, I heard nothing more.

I know this doesn't answer your question but I thought I would mention it as a matter of interest.

[Dires in reply to Tankerville]

Thank you Tankerville

I think that just goes to demonstrate the general disinterest by the medical profession in this condition. I feel it’s very hard for anyone, who doesn’t suffer with RLS , to understand the impact of the condition on our lives. How could they if they haven’t experienced the soul destroying symptoms? How many times, when I’ve told a friend about my condition, do they say ‘ Oh I had a bad night, last night too!!!’

But having said that, you wouldn’t expect a health professional to have to experience cancer, to then have an interest in curing it. The difference being that the effects of cancer are clear, obvious to the eye whereas the effects of RLS cannot be seen.

It’s frustrating and soul destroying.

[stteb]

I am wondering the same thing, as my mother suffered horribly back in the 70's with RLS and at that time it was totally dismissed as "all in her head" by her doctor.

I have been searching for a cause / cure for my mild RLS, but very severe PLMD which prevents me from ever getting deep sleep or feeling rested.

Curiously, I just received results from an Iron panel blood test yesterday and it came back with Iron level, Total Iron binding capacity, Transferrin and Transferrin % saturation all right in the middle of the normal range, but Ferritin was above the high limit at 335.

I'm just starting to research this, and may have it wrong, but have found information from studies stating that high ferritin is also caused by " chronic activation of cell-mediated immunity" such as chronic infections or inflammation in the body. The elevated ferritin reflects increased total body iron stores, but paradoxically, the stores are sequestered and not available, contributing to anemia.

This leaves me to wonder if even though my iron levels are good, the iron is not being taken up properly, especially into the brain. My answer may be to find the cause of the high ferritin.