Ferritin Questions

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TimG
Posts: 112
Joined: Wed Nov 23, 2011 2:26 pm

Ferritin Questions

Post by TimG »

How many of you take oral iron supplements to raise your ferritin levels?

If you take iron supplements how much iron do you take daily?

How often do you check your ferritin level ? (Whether you take an iron supplement or not)

How long did it take on supplemental iron for your ferritin level to get to an acceptable level for those with WED ( greater than 70 to 75 )?

What was your baseline ferritin before you began supplemental oral iron

If your ferritin reached acceptable levels, did you stop or continue to take iron supplements?

Did you notice a difference in your WED symptoms with increased ferritin?

Other comments about your iron supplementation regimen and ferritin level?

happy2010
Posts: 5
Joined: Sat Mar 15, 2014 2:29 pm
Location: West Vancouver, BC
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Re: Ferritin Questions

Post by happy2010 »

Dear Tim,
I can't speak for myself, but in the year 2012, my mom had to take 3x/day (325 mg each) of Ferrous Sulfate. Mom had for a while been suffering from very low iron due to a slow blood leakage which they could not pinpoint. But she was always tired and feeling dizzy. They would check mom's level and it would slowly increase, it took awhile and mom was back to normal. Mom gradually went off the iron to 1x/day part of 2013, and then after she doesn't have to take it anymore. On her regular doctor's visit, they would make sure everything is ok. So far so good. Mom had suffered stroke in the fall of 2011 effecting her right arm and leg.

I don't know if they helped and probably not what you are looking for since my mom doesn't have WED, but I hope you find what you are looking for.

ViewsAskew
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Posts: 16571
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Ferritin Questions

Post by ViewsAskew »

My serum ferritin was 8 and I took iron for 6-8 months and it got to the thirties. I stopped taking it for a couple years. Then, about 3 years ago, I started taking it again, but I didn't have a test. I figured it couldn't hurt - I was able to reduce the drugs during that time slightly, but I attributed it so something else. Maybe I was wrong, though, and it was the iron. I stopped the iron about 6-8 months ago because I wanted to try in infusion and I figured I'd have better luck convincing a hematologist to help if it was under 50. I had it tested two weeks ago and thought it might still be in the 30s or even higher because I'd taken the iron for a couple of years....it was 14!

Dr B has told me that oral iron works well when it's really low to get a person from, say 10 to 50, but seems to stop working as well for some people when you reach 50 or so. It's as if your body says, sorry, but I have enough. So, oral iron therapy doesn't seem to work well for many of us. And, there is no way of knowing if this will find its way into our brains - that is where we need it.

Johns Hopkins has found the best results are with an infusion. After ten years of hearing about this and them doing the research, I had one about 12 days ago. Dr B told me at my appointment that about 20% receive no benefit from an infusion and 80% receive slight to significant results in terms of reduced WED - I think he said up to 60% get substantial results and 20% are slight. One week is the fastest for anyone to show improvement, the longest is about six weeks, the average around 3-4. If no results occur within 6 weeks, then they test the ferritin and may or may not try again.

It seems that they've moved the minimum to 100, by the way. Used to be 50, then 75, now 100 - or even higher. Dr Earley has said that he'd consider giving an infusion to someone who had serum ferritin of 200! They really seem to believe that A) it's about getting it to our brains, not into our blood, and B) each of us has a different level that we have to hit for that to happen. It might be 100 for one person and 200 for another and even 300 for someone else. I do not know if an infusion increases the chances of it getting to our brains or not - but it certainly is faster and achieves levels that seem unachievable with oral iron.

I'm going to start reducing meds a bit at the two week mark and see if I can. For the last year, I've used 25 mg methadone daily and have breakthrough at least 70 percent of the time. I've never been able to use less in this time frame, though have tried. If I can use less, it will show it helped.
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.

TimG
Posts: 112
Joined: Wed Nov 23, 2011 2:26 pm

Re: Ferritin Questions

Post by TimG »

My latest ferritin level is 42, up from 19. This is after taking 27 mg oral iron supplements daily for six months. My WED synptoms seem milder. Lucky me. My primary care doc wants me to increase the dose to see if the ferritin will increase more.

Delpha Hirth
Posts: 1
Joined: Mon Mar 03, 2014 9:19 pm

Re: Ferritin Questions

Post by Delpha Hirth »

I've been taking "pur absorb" liquid iron supplement for about 3 weeks. Last blood chem. indicated iron had come up, some. Past few days I've had very rough RLS symptoms especially
at night. I'm "wondering"............has ANYONE personal experience as to whether the pur absorb can be 'lessening' the efficacy of my Sinamet or Ultracet? I'm trying to obtain/maintain
a 'happy medium" with the iron/sleep factors. Input MUCH appreciated!

ViewsAskew
Moderator
Posts: 16571
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Ferritin Questions

Post by ViewsAskew »

I have never used that product. TO my knowledge, no one has ever said that taking any kind of iron has worsened their symptoms.

When WED is worse at night suddenly and you are taking Sinemet, I'd have concerns about Sinemet causing augmentation.
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.

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