Blood donations and ferritin levels.

[wendersgame]

Hi all, I used to be a regular blood donor when I was younger, then due to regulations when I moved to Ireland, I was unable to donate for years (they had a ban on donations for anyone who had lived in the UK due to CJD/mad cow disease). Anyway.....That has been lifted now and I donated for the fiest time in July last year. I wasn't sure if it was a coincidence, but ky RLS kicked off after it (that night) snd didn't leave me for months. I ended up st my GP, who put me on Pramipexole (which I came off quickly once you guys told me!!).

I'm relatively free of my RLS at the moment as I started new iron tablets that appear to be working (I need to get ferritin checked to be sure).

Anyway... I've been asked to donate blood again next Monday and I'm not sure. I'm torn. I hates the years I couldn't donate as I think it's a good thing to do if you can... you may save someone's life. I feel bad if I can give it... to not give it... but I'm worried I will kick off months of RLS again immediately if I do.

Does anyone know the science behind this and if ferritin levels are hugely impacted by donating 1 pint of blood?

This probably is the most ridiculous question as you have people going for infusions and here I am talking of giving blood... but my social conscience is having a battle with me here. I like to donate and help someone if I can, but equally I don't want to dramatically reduce my ferritin and bring back my RLS when I feel it is controlled at the moment.

Thank you!

[SueJohnson]

It will definitely reduce your ferritin and you will again suffer with symptoms.

[wendersgame in reply to SueJohnson]

As I suspected. I didn't want to assume... in case it was a coincidence last time that my RLS kicked off badly. Thank you..

[Madlegs1 in reply to wendersgame]

Ferritin will go down by something loke 25 units per pint of blood, AFAIK.

I certainly wouldn't risk it.

Maith agat.!☘️

[wendersgame in reply to Madlegs1]

25... can't be dealing with that one bit!!! thank you!

[Hidden in reply to wendersgame]

Hi Wender, it sounds like you should put 6 months between donations. In one study, 15% of men and 14% of women had lowered ferritin due to that first donation. Second donation, shortly thereafter, caused 23 and 22%, respectively, to have lower ferritin. Third time within a year caused 40% of donators to lower ferritin. HOWEVER, it sounds like blood donations cause everyone to lose serum iron to the tune of 225mg of iron. Ouch! That’s what caused your RLS symptoms to worsen last time you donated blood. And it may take several weeks to six months (without supplements) to replace this lost iron. redcrossblood.org/donate-bl...

I believe that ferritin has very little to do with RLS, whereas serum iron is everything. You are a prime example. You got near immediate relief by taking iron at night. And even though your ferritin has increased over the past several months that you’ve been taking oral iron, you’re still pretty far from the “alleged” ideal ferritin for RLS which is over 100, preferrably 200 and 400 to 600 ideally. Yet despite this fact, and being off the Prami, your RLS is under control. It’s under control because you’re sneaking your brain some iron at night when it needs it the most because serum iron plummets at night. So no, don’t donate.

[wendersgame in reply to Hidden]

Hey Salem lake - thanks for your reply. I'm actually the opposite way... I never get immediate relief from taking iron - it took me about 4 months to get back to 'normal' after my last bout of RLS, which is why I thought it could have been the blood donation. My haemoglobin is always fine, yet my ferritin is generally rubbish (24 at lowest and 75 ish, maybe 78 at highest). I'm hoping to get this checked again next week as I've been on different iron tablets now for about 3 months and they seem to have helped, so I'm interested to see has my ferritin gone up, while my RLS has gone down - only then will I know (with a little more confidence) if it's the ferritin that has helped. I do think the blood donation messed me up last time, but I couldn't be certain as my RLS seems a little random at the best of times!

Oh and I always take my iron in the morning ha ha... I have been reading everyone here is taking it at night but I always take it the minute I get up as I know my stomach is empty, then I eat or drink nothing (apart from the orange juice I take it with) until an hour and a half later. I'm not sure I'd remember to take it if I had to take it at bed time - I'm a shocker ha ha

[Hidden in reply to wendersgame]

I never mess with success. If morning iron has done the trick then keep up the good work 🙌

[wendersgame in reply to Hidden]

Exactly 🤣 I'm better taking it when I remember or else I won't take it at all 😃

[Tanker1]

Until about 4 years ago I had very mild RLS/PLM and it didn't really bother me. Then I gave blood and the symptoms became much worse. I've never recovered even through my ferritin is back above 100.

[wendersgame in reply to Tanker1]

oh no that's not good!

[wendersgame]

thank you everyone - I am definitely not donating my blood then... it's a real shame as it's good to donate, but I can't do another 4 months of RLS for it - and especially as you're saying Salem Lake that 2nd and 3rd donations tend to lose more again!

[Moonwalker1967]

I have the same problem. I have a very rare blood group and have put myself down for a donation. It didn't have much impact on my RLS. Mine is hereditary. I am going to carry on donating.

[wendersgame in reply to Moonwalker1967]

That's great it has no effect on you. So if yours is hereditary, does your ferritin levels have no effect on your RLS?

[Moonwalker1967]

I have no idea Sorry! Only had my ferritin levels checked once and was 57. I know it's supposed to be 100. In the UK it's hard to get a blood test. I only get one a year for my L-Thyroxin levels. I have had my thyroid gland removed and to take those. Really tricky.

[Guitarist235]

Hi to all, I've found that the best temporary relief for my RLS is to simply take a walk. It doesn't have to be a long one, I do it inside the house especially if it's dark already. I just hate to push a lot of chemicals into my body which invariably always have side effects so you have to take a different tablet as well to counter that. No thank you. I'm a South African and I'm always amazed at the number of different tablets Americans consume(as portrayed in the movies of course) If that's not the case I apologize.

[wendersgame in reply to Guitarist235]

I prefer to take things naturally where I can, and I consider Iron to be something natural so go with that, but the going for a walk doesn't work for me as it's always around 2.30 am when my RLS kicks in - I do get up and walk, but it's SO disruptive to sleep that I prefer to have it not happen in the first place. It also can trigger night terrors for me (a whole different and NOT fun ball game ha ha! These are more likely with lack of sleep), that to keep myself in bed is better. I agree the walking helps and eventually it passes, but if Iron will control it then that's what I need to do myself.

[Hidden in reply to Guitarist235]

walking does work and it is part of the criteria when diagnosing RLS . Problem for me is that I have to walk for like an hour or the RLS starts right back up the minute I lie down. The longer I’m awake the lower the chance I’ll get back to sleep. I am not a big medication person either, so I use a strong vibration gun on the bottom of my feet, hot baths(nothing with cold for me), electrical stimulation, compression pumps for the legs. I do occasionally take a CBN/CBD gummy with 1 mg THC and that works well, but not something I can do very often because of my work.

[ChrisColumbus in reply to Guitarist235]

I agree that it's best not to get on prescription drugs for RLS in the first place if at all possible: mineral supplements, a careful diet and awareness of interactions with drugs prescribed for other conditions are key.

Movement is a key reliever, but while simple walking helps some, this is sometimes impracticable or insufficient. I find that vigorous movement of the legs while standing on the spot worked better for me than gentle walking.