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Restless Legs Syndrome

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HIGH FERRITIN

Arjiji profile image
Arjiji

Hello partners

We always speak of low Ferritin, because that condition is what can indicate that iron is low in the body and consequently in the brain, producing R.L.S.

I´m suffering from PMML, and an ultrasound brain Doppler test confirmed insufficient iron in brain stores. But nevertheless I have 700 ng / mL of Ferritin.

Transferrin at 201 and Transferrin Saturation Index at 45%.

No genetic markers for Hematomacrosis were found.

Is there anyone in this group who has Ferritin as high as I do and still has RLS or PMML?

23 Replies

Hi Arjiji, what's PMML?

You do have some contradictory iron results!

Arjiji profile image
Arjiji in reply to Manerva

Periodic Leg Movements (PLM), in Neurology manuals PLMM is also written.As you know, it is a nervous symptom of lower severity than Restless Legs Syndrome, characterized by muscle spasms in the legs, or from the hips, motor restlessness, and the need for movement to calm it down.

Yes, I understand the contradiction, since the Iron in my body is normal (120 mg / dL), the Transferrin too and the Transferrin Saturation Index is bordering on what is advertised for Hematomacrosis, but the specific genetic tests for this condition came out negative.

Manerva profile image
Manerva in reply to Arjiji

Thanks, I'm used to referring to PLMD (Disorder) and the variants PLMS ( when sleeping) and PLMW (when waking). I've never heard it referred to as PLMM before.

Have you thought that inflammation might be the cause of the high ferritin?

Yes my ferritin is over 700 and I still have serious rls.

Interesting Arjiji. But like Manerva, I have no clue what PMML is and google didn't help.

I don't have iron values like yours, but I do like the intellectual challenge of your iron values and RLS. First thing that springs to mind is that ferritin is the best / easiest indicator we use for brain iron deficiency (BID), but it is not a very good one. It is not based on a direct relationship between BID and ferritin, but -I think- on the acquired knowledge that BID seems to be the cause of RLS and that people with RLS generally have lower ferritin values that people without. The route between ferritin (or iron in the body other than brain or iron in the blood) takes at least several steps before it has reached the brain and the relevant parts for RLS. A while ago I tried to reconstruct that route and the step based on knowledge from the scientific literature, but got stuck. I think it requires an 'iron' specialist with far more knowledge on iron homeostasis than I have and most likely additional research to elucidate specific steps specifically for a RLS-brain. Something for Profs Juliane Winkelmann (from Germany) or Dorine Swinkels (from the Netherlands). I would love to discuss the idea with them ☺️.

Manerva profile image
Manerva in reply to LotteM

I agree, I have often wondered about the iron connection, it's known there is a connection, but it doesn't seem to be known exactly what the nature of the connection is.

In fact I have two gaps in what I know. One is why iron isn't apparently crossing the blood brain barrtier and the other is exactly how BID brings about the pathophysiology that causes RLS symptoms.

LotteM profile image
LotteM in reply to Manerva

I can only have a go at your second question, Manerva. From the top of my head, I think I have read that the iron is involved in the making and probably also maintenance of the dopamine receptors.

Manerva profile image
Manerva in reply to LotteM

Thanks

Ebi1909 profile image
Ebi1909 in reply to Manerva

Hi Manerva, the interplay between BID and neurotransmitters was posted in an article by Mr. García-Borreguero. I hope it helps: sciencedirect.com/science/a...

Eitheror profile image
Eitheror in reply to Ebi1909

Great article. Should be at the top of this site permanently.

Manerva profile image
Manerva in reply to Ebi1909

Thanks ;-)

A good article.

It does say that BID is due to deregulation of iron transport across the blood brain barrier but still doesn't explicitly say why this happens.

This is a key question really, an answer could possibly lead to a treatment that promotes this transport hence treating BID.

It also gives a good explanation of the involvement of adenosine, dopamine and glutamate but doesn't explicitly say what the nature of the connection with BID is. That is, how does BID cause dysfunction.

That relationship has not been found yet. I have been to a Hematology specialist, I have consulted in Dr. García Borreguero's clinic with his own hematologist, and other doctors: none of them know the cause of my very high ferritin. At Dr. García Borreguero's clinic, in double consultation with his hematologist, they told me that perhaps the Ferritin reading was false, that it does not correspond to the real ferritin in my body. This can be motivated by an inflammatory disease in my body, cancer, and other causes.I have been disassembling all the possible causes one by one with medical tests but the high ferrine is still there and nobody knows why.

The response of the particular hematologist I went to is: "It is not very important, get an analysis every 6 months and medical follow-up."

This condition has prevented me from making the decision to admit Dr. García-Borreguero's therapy of Intravenous Iron Infusions, although he did not advise against it, but I was afraid to put so much iron in the body with ferritin so high.

Manerva profile image
Manerva in reply to Arjiji

I believe that transferrin saturation is a more important indicator of whether it's safe to have an IV infusion. In which case it does appear it would be risky for you.

Graham3196 profile image
Graham3196 in reply to Arjiji

In an email doctor Buchfuhrer discussed the high ferritin level and inflammation. I understood him to say that if you have inflammation somewhere then a blood test might indicate a high ferritin concentration. This is not a false result and the ferritin level is actually high. It is a non-representative measurement if you assume that the inflammation is a temporary condition, in which case the ferritin level will go down when then inflammation goes away.

The point not discussed was whether the effect on RLS would be the same no matter the reason for the high ferritin.

I'm afraid I can't explain that one Arjiji.

Have you managed to maintain the good results from rTMS?

Arjiji profile image
Arjiji in reply to Amrob

Repetitive Transcranial Magnetic Stimulation, rTMS, worked well for me until a month ago. The last session was in October 2020 and it took a month to take effect but subsequently I have had 4-5 months in which the leg movements had stopped, but for a month they have resumed, not every day, only a couple of times a week, without knowing why or what the antecedent cause is.The doctor who gives me this therapy tells me that after 3 months I had to have given another 10 sessions to consolidate what was achieved and then other sessions at six, and then once a year to maintain that improvement. But due to Covid-19, in Spain we have had movement restrictions and I live in the Balearic Islands when my doctor lives in the peninsular territory, so it has not been possible.

Amrob profile image
Amrob in reply to Arjiji

Thanks Arijiji. Sorry to hear you haven't been able to access rTMS. I'm always interested to hear how different therapies work for different people. Hopefully you'll be able to resume your sessions soon. Please keep us posted.

I had an iron transfusion which raised my ferritin to 650. Did not make any difference in my RLS.

Hi, just had my Ferritin level checked for the first time and it was 444 and I have horrible restless leg.

Hi,I had my ferritin checked recently after suffering from rls for years and not once did any doctor recommend a iron check.I saw it on this website,told the doctor I wanted a test which he heartly agreed.My reading came out at just under 1000.As I had no inflammation and no previous record of iron tests,he said it could have been high for years without knowing.I was then sent for a liver scan,which diagnosed Fatty Liver Disease.I was classified as low risk and will be checked yearly.I'm still suffering with rls and take 900mg Gabapentin which has made an improvement.

I also went on a diet and now use sweetners instead of sugar.My doctor phoned me and said my iron levels have came down after last test.

Manerva profile image
Manerva in reply to Lambretta175

Hi, your screename has sparked memories I had a lambretta 125 in my youth. Did they stop production?

Mine cost me £15 in 1967, I see you can get vintage models now but they cost £1000's!

Thank you all for your answers and collaboration.

I had a ferritin test recently and it was 560. Seven years ago it was 360. Both numbers are high and both doctors concluded that the results indicate that iron deficiency is not causing my RLS. I looked up information on high ferritin and it mentioned that some cancers cause the body to store iron. Today I had my bladder scanned and I have some reoccurring bladder cancer. I had bladder cancer surgery in 2013 when the ferritin was 360. IF YOU HAVE HIGH FERRITIN GET CHECKED FOR CANCER. Make sure the urologist has a scope with a video monitor so he/she and you can see it. In 13 days I will have some cauterizing. I have had one missed diagnosis each time; LOUSY EQUIPMENT = AN INCORRECT DIAGNOSIS. I feel confident of a successful outcome and a checkup at least every year.

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