Dear All,I have now had my latest blood tests back and my ferritin levels, with the help of iron tablets, has risen from 45 to 120.
However, unlike others in our group, my RLS are still pretty awful.
Do I have to be patient and hope the RLS now improve????
Otherwise it will be pretty depressing.
Sue and others in our group, what do you think?
Unfortunately you may be one of the 50% for whom iron does not help with the RLS.
You could continue, to see if getting to 200 would help. There is always hope.🤔
Meanwhile, look at all the triggering mechanisms that have been described here- food ,drink and medications.
Good luck.
For some years two 30mg codeine tablets at bedtime had worked to an extent, allowing me to get to sleep, but by 3.00 - 4.00am RLS would be back.
Following the advice on here I managed to raise mine from 55 to 115 so a similar path to yourself. It was some months before I started to improve and now, while I am still not a great sleeper (never have been), RLS is no longer the reason for that and I only occasionally experience that 'breakthrough' in the early morning.
If you can stick with it and keep taking the iron for a bit longer, you might just get some benefit, it did take a while for it to make a difference to me.
Thank you. That is really helpful advice. I will stick with the iron.
There are two numbers that need to be considered in a morning fasted full iron panel. Ferritin should be above 100. Some Doctors think Transferrin Saturation Percentage is more important! If TSP is less than 20%. An infusion should be considered.
I supplemented with iron everyday for a year, got my ferritin to 207 from 7. It did nothing for my RLS, the nurse told me to stop supplementing. It took 18 months for my ferritin to fall to 30. I got an infusion. It was the best damn thing that ever happened for my RLS. I take iron daily now and I have never needed another infusion.
You need to look at your iron stores, not just what is floating around in the blood. Everything you ever wanted to know about iron and RLS can be found here. Complete with flowchart to follow.
sciencedirect.com/science/a...
This video is very interesting at worth your time. Want to learn about the circadian rhythm of iron and why ferritin is low at night ? (Start at the 25 minute mark) The whole video is absolutely worth your time.
Also it should go without saying, check your Vitamin D too! Vitamin D helps with iron absorption! Vitamin D and low iron are correlated.
Good luck
Many thanks. Lots to absorb so I shall sit down in a quiet moment.Have to be a bit careful how I put things to my wonderful doctor but sounds as if there is hope for a restful night.
Why do you think the iron infusion worked when the iron supplements didn’t?
There are two numbers to look at Ferritin and Transferrin Saturation Percentage. TSP is more like Iron Stores. I had something called Iron Deficiency without Anemia. Supplementing with iron when the iron stores are really low, the iron will go every where, but where it is need the most, the brain. By giving an infusion, I got 5 infusions each contained 200mg of Iron Sucrose. That is way more than can be absorbed with oral supplements. The infusion "topped off the tank", now I just have to keep it full.
Oral supplements may have worked eventually, but I suspect it would have taken a long time. BTW, 8 weeks after my infusion, my ferritin was 114. My RLS was doing great. I now try to keep my ferritin at 200. That is a lot harder than it sounds. I have been as low as 150 and a bit over 300. I get retested every 4-6 months.
That is amazing, how long did it take and how did you do it? My ferritin is at 26, was 20 4 months ago. Doing everything I can to raise it and finding it impossible
Iron (not ferritin) test
Update on Ferritin and Serum Iron
Iron/ferritin deficiency
Iron / ferritin levels
Iron ferritin levels
