My Doctor says the info from RLS is old - ferritin level not so important

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MikeS
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Joined: Fri Sep 13, 2019 12:23 pm

My Doctor says the info from RLS is old - ferritin level not so important

Post by MikeS »

Not sure what to believe now. I went to my doctor (general practitioner) to discuss my RLS. I asked for a ferritin iron level test and showed doctor some of the RLS literature en the subject, but he says that is old information and the "current thinking" is that ferritin level is not as important as once thought. I should not worry about that - as the standard blood test for iron (hemoglobin) says I'm in the normal range.

So is my RLS literature I'm getting here outdated - or is my doctor getting bad info form somewhere?

Should I start looking for anew doctor?

Rustsmith
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Re: My Doctor says the info from RLS is old - ferritin level not so important

Post by Rustsmith »

I will let our resident expert on iron (Holland) provide a more complete response, but your doctor seems to have gotten some very bad info from somewhere. The critical thing is iron levels in a specific portion of the brain, but it is only possible to measure these levels postmortem. So, ferritin levels are measured as a less than ideal indicator of the iron levels in the brain. For many, treating with iron to increase ferritin can result in dramatic improvement in their RLS. But for a small percentage of us, increasing ferritin doesn't help. As for hemogolobin levels, they generally have no relevance to RLS.

My personal opinion at this point is that it is time to start looking for a new doctor, but wait for Holland's response before doing anything because he will provide you with the latest recommendations on the various iron levels and treatment protocols.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

QyX
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Re: My Doctor says the info from RLS is old - ferritin level not so important

Post by QyX »

This is an absolute disaster that many of our physicians don't know about iron treatment or even think it is dangerous.

It is way easier to get a prescription for opioids and medical Marijuana than it is to get i.V. iron treatment.

The reason for this, I am starting to think more and more is that there are not that many severe RLS cases compared to all those cases who only have RLS symptoms for a couple of hours per day or only a few days per week.

And then you will always have a big group of patients who will do well with small doses of medication without any issues for many years.

We here are the more unlucky ones and often seem to have needs and demands who are difficult to explain due to lack of information and knowledge on the side of the professionals. Experts are rare and in seems that in certain areas even the experts are split in their opinions. Otherwise it would not be so difficult to get prescriptions for opioids in severe RLS cases.

I've made the experience several times that it was quite shocking for a doctor to learn that my RLS is so severe that it requires high potent opioids even though that is nothing that rare or special in itself.

When you search the medical literature, you can find case reports for RLS patients who need to be treated with 24/7 intrathecal injection of morphine because oral opioids were not tolerated anymore. RLS can get so much out of hand that any form of surviving would not be possible long-term.

RLS it is a quite severe conditions when long-term high potent opioid treatment becomes necessary. And even when the doctors don't want to prescribe opioids, the symptoms will simply become that severe and extreme that the patients will be forced to find a doctor. Always this jumping from doctor to doctor, always in the hope to find someone who is know what he is doing.

It is honestly quite absurd that there is a medical consensus between RLS experts how RLS should be treated but doctors fail to look up that information, even when they have patients with quite severe symptoms. I suspect they already feel like they know what they are doing and don't realize, how flawed their understanding is. At least this would be the good faith version. Who knows how many think that they will only produce addicts when they would prescribe opioids.

But then at least please give us the i.V. infusions and not make us search and beg for several years.

stjohnh
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Re: My Doctor says the info from RLS is old - ferritin level not so important

Post by stjohnh »

Yup, I agree with Steve and QyX. You need to look for a new doctor. The International Guidelines were published in 2018, not exactly outdated information.

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 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 tests doctors usually do (ferritin test) to check for low iron only check 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

ViewsAskew
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Re: My Doctor says the info from RLS is old - ferritin level not so important

Post by ViewsAskew »

Add me to the list who thinks a new doctor is in order. As noted, ferritin is not at all ideal as a method of measurement. But, that is what we have at the moment.

If I thought he would listen, I'd say go back. But, my guess is that he will not. I would like to ask him, thought, what he DOES think is up-to-date.
Ann - Take what you need, leave the rest

Managing Your RLS

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.

Bridgercan
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Re: My Doctor says the info from RLS is old - ferritin level not so important

Post by Bridgercan »

MikeS-ditto to responses so far: I would strongly encourage you to contact the nearest RLS Quality Care Center: https://www.rls.org/treatment/quality-care-centers

It is worth the travel time and expense you can spare; this is your health after all. And it is enormously helpful to find a doctor who can really hear you. This is key because you and your doctor(s) are a team and need to function as one to achieve one ultimate goal: successful management of this disease. I’ve found it takes a lot of interpersonal skill to make this happen for me: concise communication, clear expectations (who, what, when, where, how), documentation, humor, patience, persistence, and more humor.

Having someone you trust to come to appointments as an advocate is another worthwhile teammate to have. I’m lucky to have my spouse on my team who has been invaluable as my advocate when I’m just too exhausted to do anything more than nod and agree to whatever is being recommended. He’s also kept me from snapping off the heads of those who were “trying” to help but were really not hearing me or bothering to consider current research and consensus (my fuse tends to get exponentially shorter as my frustration with medical egos grows). An advocate, especially one who is more rested than you, can be another pair of eyes and ears to catch things you might not, take notes, and ask follow up questions.

Because of the lifelong (for most of us) aspect of RLS, it is an long-term investment in yourself and your health to find a doctor that is a good and knowledgeable fit for you. Good luck!

MikeS
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Joined: Fri Sep 13, 2019 12:23 pm

Re: My Doctor says the info from RLS is old - ferritin level not so important

Post by MikeS »

Thanks for all the responses. I guess I will look for a new doctor (just for my RLS treatment).
I'll stay with the same practice for my regular checkups/treatments (non-RLS) as I have no complaints about my GP and I've been using the same group of family practitioners now for over 25 years (although the one I started with has retired, and doctors come and go over time).

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