Very high ferritin levels

Whether new to RLS or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
Post Reply
karl2005united
Posts: 2
Joined: Fri Feb 28, 2020 10:22 pm

Very high ferritin levels

Post by karl2005united »

Hi there everyone I'm brand new to the board but sadly not new to the world of RLS. Having been down the 4 DA's licenced here in the UK, suffered with augmentation with them all. I moved to codeine phosphate, once again my body got used to them so now after 8 years of severe symptoms I'm on 60mg of Oxycodone, 600mg Pregabalin and an anti depressant I cant remember right now as I'm always chopping and changing. I now get around 3 hours but this is very poor quality sleep and I'm constantly tired and depressed with anxiety through the roof. I'm lucky for the last 7 years I have a very good neurologist who the last time I saw him asked me to have a blood test for Iron or ferritin, looking at the level its 777!! Now I see under 100 is about normal, with lack of iron (common in RLS) its much lower. Has anyone any idea why my ferritin is sky high? Could this be a cause of RLS? Or is there some other primary going on with my liver? I don't drink or smoke around a stone heavier than I should be, so has anyone out there seen or had anything similar, just im worried as I don't see my neurologist until April...many thanks in advance best wises Karl

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: Very high ferritin levels

Post by Rustsmith »

Karl, welcome to the discussion board. Glad you found us but sad that you had to.

Ferritin levels for the general population do not apply to those of us with RLS. For them, a number between 20 and about 300 can be normal. For us, you need to have a ferritin level OVER 100 and that is especially true when taking one of the DAs since low ferritin levels can accelerate the onset of DA augmentation. Many RLS patients who have low ferritin levels (below 100) benefit from iron therapy either with oral iron supplements or an iron IV. It is possible to increase it from very low levels (say 20 to 40) up to around 100 with oral iron supplements, but to go higher it usually requires IV treatments with an iron compound. Iron IVs are a very new treatment that most doctors are not familiar with and because they are afraid of too much iron causing organ damage (hemachromatosis), most refuse to do it even when confronted with medical publications that discuss the safety and benefits for RLS.

However, there are some of us with high ferritin levels who still have severe RLS (my ferritin level has varied between 400 and 650 for several years). High ferritin levels can be due to inflammation totally unrelated to RLS or can be due to other factors. I have asked my doctor for an explanation of why my ferritin level is so high and has remained so high for years and she cannot give me an explanation, but she is also not concerned so long as I do not show any outward signs of hemachromatosis (such as jaundice).

Perhaps one of our other members who is more familiar with iron therapy and high ferritin levels can tell you more.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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
Posts: 1284
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Very high ferritin levels

Post by stjohnh »

Hi Karl,

Most likely your very high ferritin level is caused by some type of inflammation in your body (infection, autoimmune diseases, asthma, arthritis, etc, etc). Sometimes the cause of a high ferritin cannot be determined, and sometimes it is due to high BLOOD iron. People with RLS have low BRAIN iron, even if their BLOOD iron is normal or high. There are people who had hemochromatosis (disease caused by high blood iron) who had RLS and were found to have low brain iron. This is due to the blood-brain barrier, which keeps many chemicals (including iron) out of the brain. Current thinking is that there are special transport mechanisms for moving iron from the blood into the brain (all living cells, including plants and bacteria require iron to function). It is suspected that the known genetic abnormalities of RLS patients result in inadequate transport of iron from the blood to the brain.

Ferritin is NOT a good test of iron status, but is the best currently available (other better tests for iron status are under development, and we may have a better test in just a few years).

RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Syndrome Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood test doctors usually do to check for low iron (ferritin test) only checks for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://www.sciencedirect.com/science/a ... via%3Dihub
Blessings,
Holland

karl2005united
Posts: 2
Joined: Fri Feb 28, 2020 10:22 pm

Re: Very high ferritin levels

Post by karl2005united »

Wow ty Steve and Holland I find your knowledge quite astounding! Just a shame my GP's haven't a clue and I'm sure my neurologist isn't as savvy (even though he specialises in RLS) I will attempt to read through the links and attempt to absorb it, thanks once again for your time and your knowledge, best wishes Karl (UK)

Polar Bear
Moderator
Posts: 8797
Joined: Tue Dec 26, 2006 4:34 pm
Location: United Kingdom

Re: Very high ferritin levels

Post by Polar Bear »

[quote="Rustsmith"
Many RLS patients who have low ferritin levels (below 100) benefit from iron therapy either with oral iron supplements or an iron IV. It is possible to increase it from very low levels (say 20 to 40) up to around 100 with oral iron supplements, but to go higher it usually requires IV treatments with an iron compound.


Just as an example, my ferritin was always around 160 and for some unknown reason it dropped to 56. I started an oral iron supplement and it has taken over a year to get it up to 110. We will see if it goes any further.

An iron IV appears to be very successful.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Post Reply