Hi RLS survivors
So I mistakenly had my Ferratin and TST levels tested at the wrong time of the day but the readings were:
Serum Ferratin level - 64ugl/L
All suggestions welcome ?????
Transferrin Profile
serum iron levels 12umol /L
Serum transferrin levels 3.06g/L
Transfer in saturation level. 17.5%
Assuming the transfer in saturation level is your transferrin saturation (TSAT) then your 17.5% is very low and would normally warrant an iron infusion. However I am confused because you list haemochromatosis which would mean you have too much iron, the opposite of what your tests show, On the ferritin, the fact you didn't have it in the morning means if you had had it in the morning the value would be higher than 64, which is also confusing since your transferrin saturation is so low, I would ask your doctor what your TSAT was to confirm that 17.5% is it. In any care talk to your doctor and see what s/he says.
Hi Sue
Yes this relates to TSAT which is at 17% and the GP has noted this is ‘below range’. I am repeating the test on Monday morning following fasting overnight.
How can I push for an infusion as opposed to over the counter iron tablets?
If you live near S. Wales, Dr Jose Thomas would arrange an iron infusion. He's at Gwent Sleep Clinic in Abergavenny and works privately in Cardiff.It would seem you might be someone who would respond quickly and positively to an infusion. Iron infusions dramatically improve RLS for over 60%.
You would not then need to take any medication.
As most neurologists are not up to date on latest treatments as set out in the Mayo algorithm, it will be trial and error to find a neurologist or sleep doctor in the UK who will instantly agree to iron infusions. Most still believe they are dangerous, despite newer formulations like Injectaefer having good safety profiles.
I know Prof. Walker in London is another doctor who will arrange iron infusions.
Hopefully, in the next 5 years, UK doctors will have learned about RLS and Iron infusions will be routine, first line treatment on the NHS.
Thank you so much. I suspect this won’t be offered on the nhs??
I had mine on the NHS by writing direct to St George's haematology dept in London with lots of back up research papers. I know the Royal Cornwall in Truro will also do them. But it will be the usual NHS postcode lottery. The link between low brain iron and RLS isn't taught or widely known so haematology departments are not set up to give routine iron infusions for RLS.You will have to fight your corner locally or travel somewhere a private doctor sends you. It's very early days right now.
My hematologist in Virginia before we moved was awesome… but he had/had me taking children’s chewable vitamins with iron, like flintstones. They’re absorbed differently. But I also don’t absorb iron or b12. I have intestinal metaplasia and atrophic gastritis.
Am I right in thinking that Ferritin should be 100 or over and TSAT should be 45??
Yes on ferritin. TSAT should be be between 20 and 45. The ferritin is the critical number as long as the TSAT is between those numbers.
Thank you, Sue. So if my ferritin is below 100 and TSAT is 17.5 this would indicate my levels are contributing to RLS? As in previous messages, it’s now a case of doing battle with the GP to get an iron infusion unless I go private which is costly. It’s exhausting. Would you suggest repeating the blood test? This was not done in the morning. Just wondering what benefit that would have.
It’s frustrating that medical professionals don’t understand this condition enough to really advise patients
It doesn't mean it is contributing to your RLS. Only 60% of those with Ferritin below 100 are helped by increasing it to 100 or more. Yes I would repeat the iron test to get an accurate reading. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible.
Omg I love the word survivors. Truly the worst thing ever. Your iron is lower than mine has ever been. I have to go back and look but your iron saturation is barely above normal I think? Mine has been 5% and I have iron transfusions. I think your ferritin would be “called” normal. I’m no professional just another RLS survivor. I have severe..was that a family doctor or a hematologist? Just my 2cents. Hope someone can provide more help.
Iron Infusion - Successful ?
Blood Test Results - Comments on levels please
Can anyone offer some help regarding my Ferritin levels for my RLS please.
RLS and Iron Levels
Iron stores
