Ferritin level is 6. Info needed ple... - Restless Legs Syn...

Restless Legs Syndrome
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Ferritin level is 6. Info needed please!

3labs
3labs

I had my ferritin level checked and it is 6. Can anybody tell me what this means? My doctor says that that number is fine and the only time to worry is if it's high. Please comment and tell me what I need to do next to help her understand the connection between ferritin levels and restless leg syndrome. She is a great doctor who I am very happy with but I need some info to bring to her attention so that she can help me. Thanks so much for your help!

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I would have thought that was quite low- but it would depend on the test of your blood tests. %saturation should be under 50.

There is a thing called iron avidity, where the body gets too low in iron and one can get quite sick. What are your other iron readings- hgb and serum? Do you get very tired?

I'm sure there is research on iron and rls which you could print and give to your doctor.

Maybe someone can point us in that direction.

Good luck.

3labs
3labs
in reply to Madlegs1

Thanks for your help!

Hidden
Hidden

Go to youtube in search put .. video of Dr Early on RLS and the role of iron I tried to do a link for it but it didnt work. Dr Early explains in depth of the role iron for RLS.

3labs
3labs
in reply to Hidden

Thank you very much!

My ferritin has been reduced to 31, so far. ... since reducing iron via blood donation, my restless leg issue has stopped.

From my saved notes:

Lab Ideals:

o Mag RBC = 2.67 mmol or 6.5 mg/dL o Plasma Zinc = ~100 mcg/dL o Serum Copper = ~100 mcg/dL o Serum Ceruloplasmin = 35-40 mg/dL o Serum Transferrin = 300 or 3.00g/L (however reported) o Serum Iron = 100 mcg/dL o Serum TIBC = 285 (F) / 340 (M) o % Sat (Iron/TIBC) = 25-30% o Serum Ferritin = ~20 ng/mL

Please understand, these markers are inspired by the FACT that IDEAL body temp is supposed to be 37C or 98.6 F -- and NOT 32-45C or 92-108F, which are the "bookends" of body temp. Again, it's the "Bookends" of ANY range that will cause symptoms & poor health.

3labs
3labs
in reply to knoXj

Thanks so much for your help!

Oh lord, another totally uninformed doctor.

I believe 6 is not okay for anyone on the planet, and it is at least fifteen times too little for RLS.

Your doctor may think like this because too-high iron in older women is a cause for concern. But we need it in the brain, where we are unable to store it. BID (Brain Iron Deficiency) is at the very core of RLS. Crucial.

rls.org/file/understanding-...

3labs
3labs
in reply to Parminter

Thanks so much for your time and consideration!

I have raised my serum ferritin to 170 over the last 2 years by taking ferrous bisglycinate every other night and my RLS has definitely improved over that time.

Serum ferritin of 6 is way, way took low for someone with RLS and you need to get it over 100.

A lot of people have found their RLS disappears completely after an Iron infusion.

The “ normal” range is not relevant for those with RLS - we need to have higher levels to get more iron into the brain.

3labs
3labs
in reply to Joolsg

Thank you for the information!

LotteM
LotteM
in reply to Joolsg

That’s interesting, Jools. The common belief - even among doctors /RLS researchers - is that it is virtually impossible or at least very hard to raise ferritin above 100ng/l with oral administration. I find your result encouraging. Thanks for sharing.

Joolsg
Joolsg
in reply to LotteM

Hi Lotte,

I take 25 mg of oral ferrous bisglycinate and 40mg ferrous bisglycinate patch (from PatchMD in the USA- also look for coupons- they usually have 10% off) every other night. I read somewhere on here that you must take iron every other night or the body somehow stops iron entering the brain. I never miss this regime - I follow it very strictly. I also take folic acid around 3 nights a week.

I’m getting my ferritin levels checked again tomorrow and it will be interesting to see if the levels have dropped- I have been vegan for the last 4 months.

No idea why my levels have gone up - I don’t eat meat.

I’ll let you know the results asap.

Take care

Jools

3labs
3labs
in reply to Joolsg

Thanks for the great information!

marsha2306
marsha2306
in reply to Joolsg

I wish the iron infusion lasted. Mine only helped me for a few months. Interesting, though, my ferritin level went up to 650 (!).

After a year, it was still over 400.

Joolsg
Joolsg
in reply to marsha2306

That's a real shame. I wonder why it works for months and then stops? I really hope research can shed some light on why infusions work well for a time.

marsha2306
marsha2306
in reply to Joolsg

I wish it had lasted longer. During that time i was able to get by with 300 mg gabapentin and now I’m back up to 1200 and am pacing most nights.

Dr. Early, Johns Hopkins Neurology Dept. hopkinsmedicine.org/neurolo...

3labs
3labs
in reply to DicCarlson

Thanks so much!

Your doctor obviously doesn’t know a thing about RLS and the effects of low ferritin. It needs to be over 100.

3labs
3labs
in reply to marsha2306

Thanks so much!

Just seen the neurology specialist in the hospital and he said I have augmentation from Pramipexole, he said I need to go on gabapentin up to 6 tablets a day, increasing slowly and slowly reducing the Pramipexole. He told me that with RLS you loose more iron than other people and mine was 6 in January, then 40 in April, he said this isn't high enough for RLS people, that I need to be on iron tablets for the rest of my life, the reading needs to be 100 for us and he should be able to get me symptom free!!!!! By god I hope so, but going to be fun swapping meds

Thanks for the information.

That is REALLY optimistic. A level of 100 may help your symptoms lessen, but symptom free is very hard to achieve if at all. Good luck!

Thanks, I am being realistic, even if it eases a little it would be lovely. The specialist seemed really certain this was what was needed, but like you say it varies to each person, I asked him about diet and he said it makes no difference, I'm sure sugar plays a part and tiredness, but I will follow what he says and see what happens. I will keep you updated. Good luck to everyone

A ferritin level of 6 is in iron infusion territory. Mine was a 6 when I first had it tested years ago. The first thing to do for a level that is that low to ask about infusions, they usually do 3 a week apart. Oral iron takes months to bring it up a few points. I had 3 infusions, but it did nothing for me. Some people get no success, but you need to try it, since it is one thing you CAN try. Ferritin shows how your body stores the iron, it is not the actual iron serum level. Just be aware infusions and higher numbers are not always a help for all of us. RLS is all trial and error, and it sounds like you have a good doctor! :)

3labs
3labs
in reply to nightdancer

Thanks so much for the information!

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