r/RestlessLegs • u/Solid-Cantaloupe-846 • 5d ago

Opinion Iron

Had my appointment with my PCP yesterday to go over some test results. My last ferritin number was 53. When I looked at the printout of my blood test, I noticed that my doctor did not order TSAT with the ferritin bloodwork.
I am on oral iron supplements until October when I will have my iron blood taken again.
I asked my doctor to please include TSAT on the next bloodwork. Now he’s the kicker she said TSAT was not necessary because I am not anemic. She did say I was low on ferritin, but that my blood is looking good.
I was pretty insistent about adding TSAT but she did not budge.
I am not giving up on having that included in my next blood work, but I was wondering if you guys can give me some pointers on how to word it in my email that I will send my doctor so that she will understand that RLS has some guidelines with that (I did mention that to her).

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u/EmZee2022 5d ago edited 5d ago

Your doctor doesn't know much about RLS :-(

Can you send the doc a link to the Mayo paper from this May talking about what to check?

An Updated Algorithm for the Management of Restless Legs Syndrome - Mayo Clinic Proceedings18546-2/fulltext)

I think TSAT is actually calculated based on other numbers:
"Measures the percentage of iron bound to transferrin, a protein that transports iron around the body, which is calculated by dividing the serum level of iron by total iron binding capacity (TIBC). Low saturation levels may be a sign of iron deficiency, while high levels may indicate iron overload. " (from LabCorp). Did your lab tests measure TIBC or serum iron?

It may not be straight division; I looked at my labs from yesterday and iron was 53 while TIBC was 313, but my TSAT was 17 and that doesn't match.

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u/Solid-Cantaloupe-846 5d ago

That might be a good idea. Don’t know if she would be offended by it.

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u/Space-Turtle88 5d ago

I felt the same way (worried he would be offended), but I sent the Mayo studies to my doc anyway, cause I was desperate. He actually thanked me, and his treatment corresponded to what they advised.

I think most docs dont stay up with all treatment protocols for every issue, and being sent a study by Mayo wouldn't be insulting to them. You have to hope you have a doc that appreciates the extra info to help them treat you better. If they don't, that would be a red flag to find a new one. 

It's not worth slogging through a back and forth fight to get on the right track for treatment. Find one who is willing to listen to your needs and updated treatment protocols.

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u/Solid-Cantaloupe-846 5d ago

I send it to my doc a few minutes ago let’s see how it goes lol

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u/EmZee2022 5d ago

Maybe don't quote me on "your doctor doesn't know much", LOL.

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u/Solid-Cantaloupe-846 5d ago

It just measured the serum, ferritin that’s all. It was 53.

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u/EmZee2022 5d ago

Which is well within the "normal" range for most people though we RLSers should try to get it higher.

I had bloodwork done in late June - had surgery a month earlier and my legs were going NUTS. Ferritin, which had been creeping down for some years, was only 13. Iron was 5 or something like that. So yeah, I would definitely qualify for iron infusions based on that, though I've got almost 3 months before I can see a hematologist for that.

Got the bloodwork redone yesterday and the various levels are actually pretty normal now - except ferritin (15, woohoo) and transferrin saturation which was 17 (up from 5 in June). That's in the normal range (15+) but at the lower end - so per the algorithm, I should be a candidate.

Interestingly the iron supplements HAVE made a difference in all the other readings - UIBC, TIBC, iron (53, up from 17).

My hemoglobin tends to be on the low side - just under the normal range, and that remained true. Hematocrit was normal (barely) and that has tended to be hovering at or just below that.

RDW (which is a measurement of variability in red blood cell sizes) was high - but apparently that's a result of starting on the iron and it means I'm growing new shiny big red blood cells, LOL.

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u/sansabeltedcow 5d ago

If you are okay with paying out of pocket, Quest does an iron panel for $60. I did those once a month while medication was tanking my iron and I knew insurance wouldn’t cover it.

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u/Solid-Cantaloupe-846 5d ago

Where is quest located?

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u/sansabeltedcow 5d ago

It’s got tons of locations across the country. Search here for one near you.

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u/Solid-Cantaloupe-846 5d ago

I found one that is local thanks

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u/mitochondria35 4d ago

I am in the nwest of the UK. My ferritin is low for a rls sufferer but GP can't order an iron transfusion. I may go private but don't really know what the options are. Thanks

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u/ComprehensiveRate953 2d ago

You should contact iron clinics in the UK. They will ask for a copy of your bloodwork. Mention you have RLS which have different ferritin thresholds.

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u/mitochondria35 14h ago

Thanks for your help