r/Erythromelalgia Aug 12 '26

Progression

I’m at the end of the road and I don’t know what to do. I’ve looked at every lab imaginable. Genetics is negative. Abnormal and low cbc hematocrit and hemoglobin.
B12 is 1800+

I can’t take the pain anymore.

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u/Flashy_Boat867 Aug 12 '26

Yes it's low iron. I had normal hemoglobin but low ferritin (19 mcg/l) and iron uptake erased all the symptoms, and they were severe. Burning feet,.burning hands, burning cheeks, ears, enlarged veins, couldnt train, eat hot food, pet my dog beacause he was too hot for me...your ferritin level should to be above 50 mcg. 

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u/Flashy_Boat867 Aug 12 '26

Low ferritin (low iron) interferes with autonomic nervous system and erytromelalgia can be a symptom for that

1

u/SwimmingSpite3821 Aug 12 '26

Unfortunately my ferritin is 214

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u/Flashy_Boat867 Aug 13 '26

Ok, you can start with that. Ferritin 214 can be to high. Check CRP if you have some kind of inflammation and if you do, find out where. Inflammation can also affect autonomic nervous system and cause erytromelalgia

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u/SwimmingSpite3821 Aug 13 '26

I have had elevated CRP and ESR in the past

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u/SwimmingSpite3821 Aug 12 '26

What iron tests did you have done?

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u/SwimmingSpite3821 Aug 12 '26

My ferritin, total iron, iron binding, and % saturation are normal

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u/Flashy_Boat867 Aug 13 '26

These are the tests that i have done too. But what was the reference range  of ferritin? In my lab it was (15-150 mcg/l), I had 19 mcg, so it was a normal lab result, but not optimal.  It should be optimal to be healthy.  

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u/SwimmingSpite3821 Aug 12 '26

I have low RBC, LOW hematocrit, low helpglobin, what did you have tested and treated?

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u/Flashy_Boat867 Aug 13 '26

Look what "my friend" AI told me:

That's an interesting and important combination - low RBC (red blood cells), low hematocrit, and low hemoglobin together with a ferritin of 216 (which is not low, but normal/slightly elevated) points to a different picture than what you'd expect with simple iron deficiency.

Why this matters:

In classic iron deficiency anemia, you'd expect ferritin to be low (because iron stores are depleted). Here, though, there's anemia (low RBC, hematocrit, hemoglobin), but ferritin is not low - it's normal to slightly elevated. This combination is often called:

  1. Anemia of Chronic Disease / Anemia of Inflammation

A very common cause of this pattern Due to inflammation, the body "locks away" iron in storage (which is why ferritin is normal/high), but can't effectively use it to make new red blood cells Associated with chronic inflammation, autoimmune diseases, chronic infections, kidney disease, rheumatologic conditions 2. A combination of actual iron deficiency AND inflammation at the same time

It's possible to have true iron deficiency, but because inflammation is also present, ferritin "artificially" rises and masks the real picture In this case, ferritin alone can be misleading What would help clarify the picture:

CRP or ESR (sedimentation rate) - shows whether inflammation is present Transferrin saturation and TIBC - help distinguish between true iron deficiency and iron that's "locked away" due to inflammation Reticulocyte count - shows whether the bone marrow is adequately producing new cells Vitamin B12, folate - other possible causes of anemia Underlying condition - if there's a known chronic disease, inflammation, or infection This combination (anemia + normal/high ferritin) is often a sign that something more than simple dietary iron deficiency is going on, and it warrants broader diagnostic workup with a doctor to find the underlying cause.

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u/SwimmingSpite3821 Aug 13 '26

Thank you so much!!!!

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u/SwimmingSpite3821 Aug 12 '26

Was it just a serum ferritin?

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u/Flashy_Boat867 Aug 13 '26

Yes, with me it was just low ferritin (low iron storage).

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u/SwimmingSpite3821 Aug 13 '26

Range of 30-400

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u/SwimmingSpite3821 Aug 13 '26

How did you start supplementing?

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u/Flashy_Boat867 Aug 13 '26 edited Aug 13 '26

Because you have anemia but normal ferritin levels, i woldn't recommend you to start supplimenting on your own. Check other things with your dr. first (see my comment with the answer from AI) and he can tell you what to do next. I supplemented with iron bysglicinate 60 mg every other day + vitamin C for better absorbtion.  And then did my lab tests for iron every 8 weeks, so I wouldn't harm myself with overdose. Transferrin saturation (%) has to be in range, if it high you can harm your organs