Ferritin Level Not the Issue

[maulsby]

I have read numerous posts that indicate RLS is a low brain iron level condition. I have my ferritin level tested 3 times over the past 5 years and the ferritin level is always over 200.

I am not certain what 2.5 MG of pramipexole each day is doing to my brain from a detrimental standpoint, but it controls my RLS 5 to 6 days a week. On those other nights, I have to take an additional 0.5 MG to control RLS. I have been taking 2m5 MG per night for 6 years. I don't have day time RLS.

I made an appt. with an RLS Quality Care Center in Houston for Feb. 9th.

Is there anyone taking 2.5 MG (not ER version) per day?

[stjohnh]

Hi Maulsby, I'm glad you found our group, hopefully you can get some good information. There are two issues in your post that I'd like to address:

First, 2.5 mg of pramipexole is a VERY high dose, well above the acceptable range of treatment for RLS. At that dose, you have almost certainly augmented and will need to get off the medicine. I'm glad you have an appointment with an RLS specialist.

Second, the ferritin test is not a very good test for iron levels in the body. Most people with a ferritin of 200 will have some type of inflammation in their body making the ferritin higher than the actual blood level of iron. A normally functioning person should have a ferritin of about 100 or less. The normally functioning human body controls the iron levels closely. Assuming there is not an inflammatory process making your ferritin of 200, this still doesn't tell us anything about your brain iron, which is the important factor for RLS patients. For unclear reasons, people with RLS do not get the iron from their blood into the brain properly.

[maulsby]

There is no test to determine brain iron level, so ferritin level is all we have. I am not sure about inflammation causing high ferritin level, but I will look into it. I have been taking 2.5 MG for six years and symptoms are not getting worse. I don't exhibit all of the symptoms of augmentation, but do exhibit several. Thank you for responding.

[maulsby]

Mayo Clinic serum ferritin normal range for a male is approximately 24 - 314. My ferritin level is below their max level. What is your source for concentration over 200 indicating inflammation?

[maulsby]

I found a technical paper on inflammation associated with autoimmune diseases, bacterial infections, and viral infections. Elevated ferritin levels were connected to each.

[stjohnh]

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5890889/
This article reviews the multiple functions of ferritin, with careful explanations of how they work.

https://www.sciencedirect.com/science/a ... via%3Dihub
This one also is a general article on the many things (besides iron level) that increase ferritin.

[Rustsmith]

The question of iron levels is one that is exceedingly complex, as Holland's second reference points out.

To complicate things even more, many of us take some form of opioid. Opioids can reduce testosterone levels in men and this can play havoc with iron levels because the testosterone can interact with the way that hepcidin functions. So about all that we can do is try to manage whatever parameter is out of line, whether that is low or high iron, low T or treating a chronic inflammation like arthritis. And if only there were a way to elevate brain iron for those of us with the combination of high ferritin and severe RLS.

[stjohnh]

The question of iron levels is one that is exceedingly complex, as Holland's second reference points out.
... And if only there were a way to elevate brain iron for those of us with the combination of high ferritin and severe RLS.

Before I got my IV iron infusions I tried several things, the nails in my ears didn't help though. LOL.

[Rustsmith]

the nails in my ears didn't help though.

That reminds me of a spot on the news several years back about a carpenter who accidentally fired a nail gun into his head. That would be going WAY, WAY too far out - LOL!!!

And in case somebody doesn't understand and thinks that we are serious, Holland and my posts are JOKES!! As they say, do not try this at home!