Ferritin Level

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
dayandnight
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Ferritin Level

Postby dayandnight » Fri Jul 12, 2013 11:26 am

I have elevated my ferritin level to 308 and the saturation is 29% but the RLS has not changed. Even though these values are in the normal areas, isn't the bottom line, the ferritin level in the cerebral spinal fluid (CSF)? Am I correct that this can only be measured via a spinal tap? And let's say it turns out to be low, how do you elevate it? The hematologist that infused my iron had never heard of the concern about low ferritin levels in the CSF with regard to RLS. Do these MD's ever get on the same page? There is considerable data out there about low CSF ferritin and RLS.

ViewsAskew
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Re: Ferritin Level

Postby ViewsAskew » Sat Jul 13, 2013 1:39 am

I do believe it can only be measured by a spinal tap. I haven't been reading research results as I used to, but I don't recall reading that the CSF level was ever tested on regular patients. They studied it, I thought, just to see if it was lower in WED patients - and it is. I also don't think they yet know the mechanism for the iron failure or how to treat it. It's just low....and for now,it's something we just live with. Badnights will likely know if I'm missing something.

Per the doctors, I think the first studies about CSF iron took place over ten years ago! I've heard that it takes about 15 years for new information to make it into the common knowledge and collected wisdom of doctors. Guess we're still waiting.
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.

badnights
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Re: Ferritin Level

Postby badnights » Sun Jul 14, 2013 2:23 am

Sad, isn't it? There are just so many diseases and treatments that GPs and specialists in other fields don't learn about developments unless they actively seek to stay up to date. It must be hard, because there are so many things to stay up to date with.

I don't mind that they don't know (though it irks me if they call themselves sleep specialists or neurologists yet don't know 10-yr-old WED developments) - but I get really ticked at people who are not even interested in learning, or in pursuing information when they see they are lacking, like when a patient tells them something they didn't already know - they should look into it! not just ignore it, or worse, assume the patient is mistaken. And if they're too busy to look into it, they shouldn't pretend to be treating you any longer - they should pass your care along to someone who has the time to look for recent information.

Wishful thinking.

CSF iron and ferritin will supposedly go up as serum iron and ferritin go up, but no one knows exactly why. (it's not diffusion so it can't be a diffusion gradient). In cases where the WED symptoms don't improve, the underlying assumption seems to be that, for some reason, iron levels remained very low on the CSF side despite raising iron in the blood. Maybe you're one of those people. On the other hand, Dr Earley in the recent WEDF webinar on iron and RLS/WED, said he wouldn't even hesitate to give intravenous iron to a WED patient whose ferritin was as high as 200. Higher than that, he might still do it, depending on other factors.

The way he does it, is he raises the ferritin as high as necessary to make symptoms go away (within limits, and I'm sure I don't have the whole story, but you will see my point:). Then over the next months, he monitors the ferritin level on a regular schedule. When symptoms return, the ferritin level at the time of return becomes the target level for that person. The aim is to keep that person's ferritin above that level at which symptoms returned. For you, it might be 250. For me, it might be 80. You see?

So maybe your ferritin still isn't high enough for you.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

ViewsAskew
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Re: Ferritin Level

Postby ViewsAskew » Sun Jul 14, 2013 2:46 am

Thanks, Beth. I MUST listen to that webinar....Beth, I just looked for it. Is it in the Members Only section? I couldn't find it.
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.

badnights
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Re: Ferritin Level

Postby badnights » Sun Jul 14, 2013 5:52 am

Not obvious! They're on the blog site (http://wedinfo.blogspot.ca/)

Actually, try this
http://wedinfo.blogspot.ca/#uds-search-results

EDIT: ouch, they did not include the presentation slides. That will make it harder to understand, especially Connor's part.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

dayandnight
Posts: 32
Joined: Sun Feb 26, 2012 4:24 pm

Re: Ferritin Level

Postby dayandnight » Sun Jul 14, 2013 9:56 am

Thank you Beth. All my labs will be faxed to Dr. B, so I'll let him decide what to do next. He and Dr, Earley on the same page, right? In the webinar, did Dr. Earley mention what form of iron he likes to infuse? I know Dr. B. likes Dextran, but none of the infusion centers, including hospitals, use that anymore. Infed (iron sucrose) is all they use. Ideas?

badnights
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Re: Ferritin Level

Postby badnights » Sun Jul 14, 2013 9:40 pm

Dr Earley was very very clear that low molecular-weight sugars were the only ones that would be effective for WED. Low molecular-weight iron dextran (also called INFeD) is what he uses, 1000 mg per dose. He says this form allows the iron to end up in the blood whereas the short-acting, HMW iron molecules cause iron to go to the marrow and stay there.

Since it takes 4-6 weeks to take effect, he does a followup at 6, 10 and 14 weeks. The IV 1000 mg iron dextran is repeated if symptoms have not improved or have not improved enough - I don't know how he determines this, but that's the idea anyway. I don't know how many times he would want to repeat the iron dextran IV. Some people just don't respond.

If symptom relief is obtained, the procedure I mentioned before is followed to find the baseline ferritin level for that person.

He is more than willing, he is happy to work with any doctor (usually a hematologist) who wants to treat WED with IV iron dextran. He says, however, that even after providing them with the research, and with a protocol to follow, it is a struggle to convince most of them that the important factor is ferritin in relation to WED, not in relation to anemia.

He has been trying to get IV iron approved by FDA as a treatment for WED, but it's complicated and my notes don't explain why.

Examples of HMW iron complexes that are ineffective : Venofer/ iron sucrose, Ferrlecit (sodium ferric gluconate complex in sucrose)

Examples of LMW iron complexes that have been effective: Ferinject/ ferric carboxymaltose; iron dextran /INFeD/Dexferrum/Imferon (mixture of ferric hydroxide and dextran)

The response among WED patients to IV iron dextran is bimodal: it works, or it doesn't. Studies vary, but it's probably safe to say at least half of WED patients who have tried it have benefited; in one study, 25% were still without medications 6 months afterward. For the most part, if it works, the result is significant, and if it doesn't work, it doesn't work at all.

If your ferritin is below 75 ng, you might be better off trying to raise it to 75 with oral iron. Above 75, oral iron is not likely to be effective, and IV iron becomes a better option.

This is my understanding of what he presented.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

dayandnight
Posts: 32
Joined: Sun Feb 26, 2012 4:24 pm

Re: Ferritin Level

Postby dayandnight » Tue Jul 16, 2013 11:42 am

Beth, thank you very much. Although fairly technical, I have been doing acute patient care in the medical field for 30 years as a respiratory therapist, so I appreciate the science that's involved. My labs came back from my last infusion two weeks ago; serum ferritin 345 and iron sat 17%. Why would the sat go down? I do Have Crone's Disease, so maybe it's low due to a chronic inflammatory bowel. Although, it doesn't appear to be the least bit active. I take Remicade infusions to keep it under control. I have Googled causes for a combination of, normal serum ferritin and low sat, but the issue really isn't addressed. 1000mg, boy that's a lot. I have been getting 200 mg. Guess I have a ways to go. Does Dr. Earley have concerns about iron overload, and if he does, at what point? With regard to what you have told me, is there a website where I can read about all this? Better yet, how can my hematologist get up to speed? Thanks again...don

rthom
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Re: Ferritin Level

Postby rthom » Tue Jul 16, 2013 12:57 pm

Don a lot of the information came from a Webinar Dr E gave a few months ago. Last I saw it was available on the WEDF site. I'm not sure where offhand.
Anyway here's a link:

http://wedinfo.blogspot.ca/2013/06/webi ... -iron.html

Also because of your Crones I wonder if a gluten free diet would help you at all. It works for some, May be worth a shot for you.
Good luck

badnights
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Re: Ferritin Level

Postby badnights » Wed Jul 17, 2013 7:26 am

I don't know enough about the iron system altogether, particularly why the saturation would go down with ferritin staying the same. I would guess it's something to do with the Crohn's.

I believe Dr E would want to consider other factors before giving you/recommending infusions. You're above the upper end of the "normal" range (20-200, according to a study he mentioned). To get your hematologist up to speed, definitely ask him if he would contact Dr Earley at Johns Hopkins, who sure sounded like he would be happy to work with other doctors on WED treatment by iron infusion. Dr E won't be able to recommend anything without knowing more of your medical background, which seems to require that your hematologist consult Dr E on your case. Not sure how to make that happen.

The webinar (see rthom's link) is sound only, not the slides, unfortunately, but it's still valuable. There are questions and answers at the end.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.


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