Feratin level update: For those of you... - Restless Legs Syn...

Restless Legs Syndrome

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Feratin level update

AnneJende
AnneJende

For those of you who dont know me and those of you who do, my iron fusions have made me a new person! I will not have new feratin levels drawn for 2 mo but I sincerely believe that this is the action needed for my rls.

I sleep every night from 6-10 hours a night. I have no breakthroughs throughout the day. Is this the answer for all? Absolutely not. But please take notice and get your feratin levels checked.

Hurray! I'm a success story!

22 Replies
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Hidden
Hidden

This is wonderful news, long may it continue :))

Congrats but why is a ferritin fusion? How does it work?

AnneJende
AnneJende in reply to Chopsies

It is actually an iron infusion necessary because of unusually low ferratin levels. Mine were at 11 when they should be, for an rls sufferer, 70-100.

I was given 5 separate infusions which is simply an IV of iron in your arm takes about an hour.

This is a treatment Johns Hopkins is really positive about and thankfully I found a Dr. in Wisconsin that was familiar with it.

99selkies
99selkies in reply to AnneJende

I cannot find a doctor in UK who will do this

AnneJende
AnneJende in reply to 99selkies

I am in the USA. And I got a lot of "why are you having this done? Never heard of it being done for that..." in the outpatient area I was sent to locally. So it's new here too.

Hopefully others here can help you find a Dr. who can help.

Congratulations ! I hope it lasts.

Really pleased for you.I hope you stay well. Can you say what your ferritin level is now and what it was before? And what is the advantage of an infusion over an oral dose of iron?x

AnneJende
AnneJende in reply to Jumpey

My level prior was 11...I know crazy low! The Dr. wants to wait until I'm 3 months out before he takes another level. I suppose to see if it holds.

I had gastric bypass surgery so have a difficult time retaining nutrients from food and even if it was enough the oral iron makes me extremely nauseous. I actually still take a chewable gastric bypass vitamin and wear an iron patch and a B12 subcutaneously.

I will probably need the process done yearly.

Jumpey
Jumpey in reply to AnneJende

Thank you for your reply. I hope you continue to get relief.I would be interested to know what your levels are after 3 months.x

AnneJende
AnneJende in reply to Jumpey

I will definitely continue to update my journey!

Hooray, I am delighted for you - a good success story is needed every now and again.

My advice - enjoy every moment and long may it last.

I mentioned ro my dr about getting my level checked. She said since i take an iron tab daily it would effect my results from the test

Should i get one anyway?

Hidden
Hidden in reply to Cindymcn

Yes you should, even more so if you are taking iron daily and you havent got your ferritin level tested first. You need to know your ferritin level number, its possible that you are taking that iron pill and not need it. You could have a healthy ferritin level.

AnneJende
AnneJende in reply to Cindymcn

Absolutely! And not just an iron level, a feratin level. Very important distinction!

I was also on the iron patch and a chewable vitamin with iron and my body just stopped keeping iron in my system.

Our bodies are crazy things! For a lot of us it takes a certain feratin level and says "that's enough " and flushes the rest. What an infusion does is raises it well above the normal level in an attempt to fool the body to level off at an acceptable feratin level,

Cindymcn
Cindymcn in reply to AnneJende

I will be asking her for a ferritn check then..Thanks so much. I wonder about my doc sometimes...

AnneJende
AnneJende in reply to Cindymcn

I think we've all felt that at one time or another....unfortunately!

Wonderful news Annejende. Great to hear positive news.

Hidden
Hidden

Great news Annjende, I hope it last, but it can drop so getting it checked after 3 months your doctor is on the ball. :)

AnneJende
AnneJende in reply to Hidden

I do like him! Finally a Dr who gets it!

👍👍👍👍👍👍👍

Hi, so happy for you 😊 I have had rls for about 25 years, I have been taking pramapexil for about 10 years now! & to be honest it really cured my rls (but having to live on 2 a day) with a side effect of obsessive yawning which drives me mad, but obviously this is nothing compared to rls, also l never raealised it can cause obsessions,until I came across this group! I am obsessed with food litterly cannot stop, when I look back it is since I have been taking pramapexil, I have put a lot of weight on😂 & no matter how much I try I cannot even diet for a day, when I start the day I think right today I will try to eat healthily but never understood why i just have no will power but reading the obsessions other people have with this drug I now know why ☹️ But just lately the drug has stopped working so been taking more ( abslolute nightmare) so went to doctors on Friday, she said that my iron levels may be low, & this seems to have a connection with rls.

Sorry for long reply 😂 I have my blood test Monday so maybe this is true!

Paula

AnneJende
AnneJende in reply to Paulamaria

Just make sure they did a feratin level not just an iron level. The feratin level is what is important.

Yes. I believe I am one of the lucky ones who can find no genetic component in this illness but because of my gastric bypass and honestly not very iron rich diet I have an incredibly low feratin level.

I have also been using gabapentin for years for epilepsy so a happy side effect was to just increase this a bit and it also helps.

Although not the only answer for all it is most certainly a big, big help for many!

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