Iron advice please

[Edeen]

My RLS flared up last summer out if the blue and it looks like it’s here to stay 🥲 I’m 43.

I had a blood test to check my ferritin levels and the result was 30. I’ve been taking 1 x 200mg of ferrous sulphate daily ever since (on and off but mainly on!)

I’ve just had another blood test and the level is 60 but I’m still not getting much relief from this awful RLS. From what I’ve read on here trying to increase my level to 75-100 might help so I’m now taking Vitamin D in the morning, magnesium in the day and 1 x ferrous sulphate along with a vitamin C tablet approx 30 mins before bed (every other day) . Does this sound like the best plan to try and increase my levels?

Thank you in advance for your advice, and I’m so sorry we’re all suffering with this it’s miserable!

[Edeen]

Thanks for your advice, that’s really helpful x

[Munroist in reply to Edeen]

I did the above double dose of ferrous bisglycinate (Holland and Barret gentle Iron) every other evening with a bit of vitamin C and my ferritin levels went from 75 to 140 over a month or so so it seems to work. No stomach problems either.

[Edeen in reply to Munroist]

Did you find your RLS symptoms were reduced as a result? 🤞 thank you

[Munroist in reply to Edeen]

Unfortunately RLS didn't seem to improve noticeably, but I'm still not particularly high iron levels for an RLS sufferer - I believe 200+ is where I need to be, but then again serum iron isn't a great predictor of brain iron so it may not help ultimately. I have a referral to a neurologist to try an iron infusion in case I'm one of the 60% it helps but I'm already getting negative responses e.g. the NHS doesn't do these etc. Not giving up yet though.Personally my triggers are mainly exercise and particularly strenuous exercise e.g. weights, fast running, cycling etc. I find I need exercise to keep the symptoms down but it needs to be moderate so I manage it that way, just avoiding going over 80% effort. I've tried magnesium, low carb diets etc. which are generally not a bad idea anyway and I have a feeling they help but nothing dramatic.

[Zedz in reply to Munroist]

If no luck with neuro go to hematologist. Mine was the key to getting infusions after years of begging for referral. The intricacies of how all the components of the blood works together isn’t apparent to other specialties.

[Munroist in reply to Zedz]

Did the infusions help your RLS?

[Zedz in reply to Munroist]

Yes in combination with gabapentin and when ferritin gets less than 120 I feel it return. I was also diagnosed with Megaloblastic anemia (low b12 and folate) so getting B12 shots and taking folate has decreased my frequency of need for infusions. Life has been way more enjoyable now

[Munroist in reply to Zedz]

Thanks

[Jumpey]

Just wondering if anything changed to make it flare up.Did you start taking any other meds which could be exacerbating it? Anti histamine or anti depressants for example?

[Edeen in reply to Jumpey]

Hi No absolutely nothing, it was all very strange. I’ve always suffered on long flights, sitting in a cinema/theatre and sometimes in the evenings if I was tired but it’s never disrupted my sleep like this. I’ve put it down to age?!

[Eryl]

In asking why did it flare up you should look at your diet, did you increase the ammount or type of fruit you eat, increase the ammount of fruit juice or sugary soft drinks or ices? The ammount of sugar in the blood can be very inflammatory and cause nerve sensitvity leading to RLS. It can take a few weeks to six months for this inflammation to clear up.