Ferritin

[NonnieJ]

Please can you remind me of lowest Ferritin levels acceptable for RLS sufferers.

My last reading was 60, having gradually come down from 400 following an infusion. I had to fight for that infusion(level was then in the 20s.) I only managed to get it because the mother of a locum I saw was high up in that hospital department and arranged it.

Mostly my requests via gps are refused by Haemotology.

I have managed two infusions previously. One because my ferritin was deemed to be too low for an operation I needed and another when my level was 7.

Since my last infusion approx 18 months ago, I have tried to keep my levels up by taking Gentle Iron every other day with orange juice. Evidently this hasn't helped..... I have Coeliac disease and my body just won't retain it.

I need ammunition for my gp appointment next week.

Many thanks.

[SueJohnson]

100

[NonnieJ in reply to SueJohnson]

Thanks Sue. I was pretty sure that was what it was, but just needed to check.

[Joolsg]

sciencedirect.com/science/a...

Try showing this. There are as few other research articles and Cochrane research, regarded as the gold standard of research concludes iron infusions result in 'moderate improvement'. For Cochrane to say that, it means results are VERY good.

cochranelibrary.com/web/coc...

If you can't get an NHS infusion, Prof. Toby Richards at the Iron Clinic in Harley Street will do one for around £800. You just send him your full panel iron results.

[NonnieJ in reply to Joolsg]

Thanks Joolsg.

I will download that,very helpful.

[DicCarlson]

This may help - get the probiotic strain Lactobacillus plantarum 299v (Lp299v). "intake of Lp299v can increase iron absorption by over 100 %" You can purchase it from Jarrow "Ideal Bowel Support". Or the Good Belly brand of probiotic supplements and drinks.

ncbi.nlm.nih.gov/pmc/articl....

[NonnieJ in reply to DicCarlson]

Thank you. That's helpful to know.

[Debra626]

This is from US experts on iron; this is what I used to get my insurance in the US to pay for my IV iron. At the time, my ferritin was 90. Good luck.

IronPg2

[NonnieJ in reply to Debra626]

Thanks Debra. I'm in the UK & I need as much ammunition as I can get.