Following the advice in the Mayo's clinic protocol, I asked my doctor for a full iron assessment including serum iron, ferritin, total iron-binding capacity, and percentage transferrin saturation which should be measured in the early morning after an overnight fast.
She did not arrange any tests for me, so must have been relying on past tests for the information in her reply to me, which was:
"Your ferritin level is 70.8ng/ml, which is well within the normal range. Your haemoglobin is also normal. In iron deficiency, generally the red cells are small and yours are not. I am afraid I can't therefore justify detailed iron studies and we would also been highly unlikely to suggest IV iron treatment."
I can't help but feel short-changed by this, especially as I have read that ferritin levels should be over 100. Neither do I remember fasting before any recent blood tests.
Any advice please?
Written by
Desperate100
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Yes you have been shortchanged and she is also not familiar with the treatment of RLS. Print out the section in the Mayo Clinic Updated Algorithm on RLS on ferritin and send it to her again asking for a full iron panel test. In the meanwhile, start taking iron supplements. If she won't read it or refuses to do it, switch doctors.
My ferritin levels, revealed in routine - i.e. not specially requested - blood tests, have never been below 200-300, so I've never had to push on this area. But my current GP is always amenable to discussion and flexibility. But that wasn't the case at previous GPs!
On the other hand, I've been referred to consultants who blindly quote NICE guidelines despite clear evidence that they are wrong...
I'm afraid it's all a bit potluck here in the UK - but not necessarily much better in other countries from what one reads on here!
Sadly UK doctors aren't taught anything about RLS and rely on the outdated NICE and NHS guidelines.However, if your results from last tests showed levels of 70, you could start supplements yourself and try to raise levels with ferrous bisglycinate every other night. Another possibility is to bypass your GP and write to the haematology department at your nearest teaching hospital sending them the Mayo algorithm and the links below.
I had a doctor who was reasonably helpful, eventually agreed to a proper iron blood test and then referred me to a neurologist who agreed I probably had RLS without speaking to me but said they just don’t do infusions and were too busy and overworked to implement it as a treatment option. If they’d spent the time looking into treatments that they spent listing excuses for not doing it such as underfunding, over work etc. etc. it probably would have been possible as some places do give infusions. I was recommended to go private. In all it was a pretty sad experience. My plan is to go private and then if it works I will be back making a fuss to get them to offer it.
Dont waste time trying to teach this doctor what we all know. Your number one priority is getting rid of your RLS. 60% of RLS patients get a benefit from intravenous (IV) iron infusion. Some of these, perhaps half, get 100% relief. Some patients need their Ferritin to be raised to 350 to get relief. The fastest way to get possible relief is to get an IV to raise your ferritin to 350 as soon as possible. Once I decided that an IV was possibly going to help I had to go to five doctors before I found one who was very helpful and she spent quite a bit of time finding a specialist who would do it. Its a very normal treatment for all sorts of problems and I sat in a room with about 20 other people all being stoked with whatever they needed. My daughter also has bad RLS until about 4 years ago, she had an infusion and has been 100% fixed since that day. Unfortunately it didn't help me but don't let that stop you trying it!
One of the great things about Australia is that pathology is regarded as a routine tool for the medical profession and my regular doctor has no qualms about ordering a full suite of tests at regular intervals. (usually 6 months) It makes the pathology companies rich but it adds a bit of scientific feedback.
A scientist at one of the pathology laboratories recommended that I always use the same lab because for some tests there are variations between labs which can be confusing. A couple of doctors I have seen say that you don't need to fast but other experts say that fasting is required. I always fast before an iron measurement just to be consistant.
Don't expect instant relief (like my lucky daughter had) because it can take a couple of months for the ferritin boost to work.
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Iron Blood Test Results
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Blood test (Iron) results - likely the cause of my RLS?!
Good iron levels for the four blood tests relevant to RLS?
Iron panel test results
