Blood tests ✅ : So this morning I had... - Restless Legs Syn...

Restless Legs Syndrome

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Blood tests ✅

RestlessMe profile image
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So this morning I had bloods taken, a full iron study. I should get the results by Tuesday. I just want to tell somebody who gets restless legs.

So this morning I had bloods taken, a full iron study. I should get the results by Tuesday. Watch this space.

I’ve just found this link on another post I thought I’d share it . bloodtestsresults.com/iron-...

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RestlessMe
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RestlessMe profile image
RestlessMe

Just an added note to the above. I am having the most just played with my legs. , I’ve been taking a gentle iron tablet every other day, and I’ve left those off for the blood test. My thoughts are perhaps they were helping? It’s the only thing that’s different as far as tablets go.?

WideBody profile image
WideBody

I agree that every day is the quickest way to raise ferritin. I did iron supplements every day, for a year, ferritin went from 7 to 207. It did nothing for my RLS so I stopped. It took 18 months for my ferritin to fall back to 30. An iron infusion changed my opinion a lot.

While I do think people should try the least invasive approach first, if iron stores are low, supplementing could take years. From my understanding that is why Transferrin Saturation Percentage can be more important that Ferritin levels. If TSP is under 20%, I think an infusion is the best choice.

BTW I still supplement every night. Need to get retested soon.

Amrob profile image
Amrob

There's a solid evidence base to show that taking iron supplements every other day results in greater uptake by the body.. And it's widely accepted practice.So hardly an urban myth.

RestlessMe profile image
RestlessMe in reply to Amrob

I was advised to take it every other day. So I take a gentle iron tablet every other day. It works for me, and that’s all I can say really.

WideBody profile image
WideBody in reply to Amrob

The way it was explained to me, is the percentage of iron absorbed will be less if taken everyday, but the overall absorption will be greater.

I also think it is important (for me) to monitor Vitamin D. I also have low vitamin D. Vitamin D blocks hepcidin which lowers iron absorption.

RestlessMe profile image
RestlessMe in reply to Amrob

Every other day works for me.

Munroist profile image
Munroist

I take gentle iron and it doesn’t have any immediate effect, ever. Over several months I raised my ferritin from 70 to 140 and I believe I saw an improvement in symptoms, still restless but less intense. Regarding infusions there are plenty of people here who have had them or are having them and report a very clear benefit, the anecdotal rate of success being 60% of people benefit. Plus recommended in latest Mayo Algorithm by the people most experienced in treating RLS. Difficult to discount.

RestlessMe profile image
RestlessMe

I agree.

Munroist profile image
Munroist

I agree oral iron is first and best option but unfortunately is only having a very limited effect for me. I’d much prefer not to have to be following up with the hassle of infusions especially as half the NHS doesn’t recognise them as valid treatment so it’s hard work.

WideBody profile image
WideBody

I agree, taking the least invasive approach is best. However, I do think if iron stores are low, it will take years to get iron levels back up and stable. The body will use it the iron for a lot of other things before it the iron can make it to the brain. An infussion can make it happen more quickly. I believe the clinical consensus is if TSP is less than 20% an infusion is recommended.

WideBody profile image
WideBody

I am buying it. I think the infusion saved my life and greatly benefited my RLS. There is tons of science around Iron and RLS. Iron does not account for everyone though. Here are some resources if your interested. If not, That's fine too.

RLS and Iron Webinar, at about 26 minutes they talk about the circadian rhythm of iron. This is why we take iron at night.

youtube.com/watch?v=VVlQKOO...

Evidence-based and consensus clinical practice guidelines for the iron treatment of restless legs syndrome/Willis-Ekbom disease in adults and children: an IRLSSG task force report

sciencedirect.com/science/a...

If you would like to know the mechanisms behind how low iron in the Central Nervous System creates the movements of RLS. Also why I take Dipyridamole

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

As I said, I experienced it so I am a little biased.

WideBody profile image
WideBody

I don't fully understand your theory. I would love to hear your analysis of the third paper. Adenosine Hypothesis of RLS. That paper and the rabbit hole it goes down confirms it is an iron deficiency of the CNS. (Central Nervous System). BTW, If you have questions, Dr. Ferre responds to his email. :-)

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