I wish I'd studied medicine!

[Graham3196]

Anemia is important to RLS patients. In Australia being officially anemic is the key to getting an iron infusion easily with support from the Government,

So I have been looking for a definition.

Found this but I have trouble following it. Its long and boring.

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

The title is "The definition of anemia: what is the lower limit of normal of the blood hemoglobin concentration?"

It might be useful to someone.

Interesting note is that the usual definition is based on some outdated work by the World Health Organisation. (WHO)

Like so many things I hear about the gospel according to research decades or a century ago have been enshrined in some standard and doesn't seem to have been reviewed, The profession apparently says that problem is solved so now we can base a whole lot of future work and advice on it.

This is irrelevant but I heard the Body Mass Index (BMI) is one of these things that was devised in about 1850 and human beings have changed a lot since then, even if the original research was acceptable by modern standards.

[Madlegs1]

Without having followed your links, I will offer the following observations from my recent experience with phlebotomy.

In USA Phlebotomy may NOT be undertaken if HGB is below 12.5. due to perceived implication of anaemia.

However, in other areas, (such as Ireland) they can go below 11.0 !

I had a terrible time whenever my HGB went below 12 - sore and bleeding gums, loose teeth, lethargy and utter exhaustion.

Now that I've finished with the Phlebotomy course ( ferritin down to a healthy 131 🤗) I am a whole lot better- have energy, can eat steak again without feeling a tooth was going to pop out , just feeling normal!

So-- there doesn't seem to be an accepted international level for "normal" hgb.

The Iron Disorders Institute is a reputable organisation with a lot of information on all matters iron.

Hope this helps.

[Graham3196 in reply to Madlegs1]

Thanks for that. I'll read up some more on iron. Its frustrating having to turn a disease into a hobby just to see what treatments there might be. For all of us its frustrating.

[Graham3196 in reply to Madlegs1]

Does that mean you were suffering from excess ferritin?

[Madlegs1 in reply to Graham3196]

Yes!

At the risk of boring the old-timers here, I'll summarise my story.

From reading here about the need for higher than normal ferritin levels, l persuaded my GP to test for ferritin.

It was 1400! I was immediately sent for tests- all normal, so I had to have an 18 month phlebotomy course to reduce it to acceptable level. They wanted me to go down to 70, but I was having none of that. So we agreed on 150 or thereabouts.

The final diagnosis is that the high level was due to transfusions while in ICU after a spinal trauma.

Dr Buchfuhrer reckoned the ferritin wasn't getting through to my brain, which seems to be the case for a number of people.

[Graham3196 in reply to Madlegs1]

Gee some people have more exciting lives than me! I wish you medical boredom in future.

It sounds like you would be an excellent subject for the Spanish trans cranial ultrasound and, depending on the result, subsequent iron infusion with whatever the doctor has to offer. Its an interesting thought that we might have a huge surplus of Ferritin in our blood but not in our brain where we need it to fend off RLS.

In my case I am managing the RLS at the moment so a trip to Spain might be off the budget. My wife might have to go to Germany for treatment of a problem in a year or so and that might be an opportunity for a joint medical holiday to Europe. Worse things could happen! Meanwhile I will look for english language papers about this measurement and treatment. I have spoken to a few experts in Australia and they don't seem to know anything about using ultrasound to measure iron in the brain. That doesn't mean that the next person I find won't be an expert at this.

[Madlegs1 in reply to Graham3196]

Thankyou, Graham. I wish both of you all the best in your various medical trips.

[Parminter]

We can have iron deficiency without anaemia, we usually do.

It is the capacity of the brain to store iron that matters, and only a ferritin test will demonstrate that.

So the usual blood tests may be of no help at all.

[1stdoginohladdie]

I have been anaemic for most of my adult life. Certainly before I was diagnosed with RLS. I take daily iron, potassium, magnesium pills. All of these are now in the good range but I still have RLS.