Thread by @Naomi_D_Harvey

So, I’m pretty sure I have an iron deficiency that all my doctors have missed. And it’s likely many pwME and LC do too, because it’s hugely overlooked even in symptomatic patients.

I’ve put together a thread 🧵 to help inform other with #MEcfs #LongCovid & #Fibromyalgia

This paper here is what I will cite in this thread. There are other papers but they’re mostly all cited in this one and I need to save my energy so I will just take from this one onlinelibrary.wiley.com/doi/full/10.10…

Key takeaway point:

“Iron deficiency may be severe despite a normal hemoglobin and full blood count”

“Symptoms which may be prolonged and debilitating, should raise a clinical suspicion of iron deficiency even if full blood count is normal”

#MedTwitter

“ferritin concentration may be near to normal, while iron staining of a bone marrow aspiration sample is devoid of iron”

“it is essential not to rely only on results of a single test but to consider the whole picture”

“Patients with true iron deficiency anemia on the basis of negative bone marrow iron staining may have a serum ferritin concentration close to 50 μg/L”

“Patients with restless leg syndrome should be considered iron deficient when their ferritin concentration is <75 μg/L”

“patients with negative bone marrow iron stores have been shown to present with serum ferritin levels of close to 100 μg/L”

In lay terms, you can be iron deficient even with ferritin close to 100 μg/L

“Iron deficiency in patients with heart failure impairs the quality of life, irrespective of the presence of anemia. There, iron deficiency was defined as a ferritin level <100 μg/L or, [ferritin] at 100–299 μg/L with transferrin saturation <20%”

How many have saturation tested?

Symptoms include: “fatigue, brain fog, muscle and joint pains, weight gain, headache, dyspnoea, palpitations, sometimes associated with sleep disturbances, arrhythmia, lump in the throat or difficulty in swallowing, and restless legs”

Given the overlap in symptom profile between ME/CFS, LC, Fibro, Lyme etc. and the links between ME/CFS and heart failure, I personally think we all need to be properly evaluated for iron deficiency.

Addressing it won’t be a cure but *could* improve quality of life.

So what are my tests like?

My ferritin has gone from 55-89ug/L (with iron supplements) since last year.

My haemoglobin is normal (149g/L).

So my doctors say I’m ok.

But, I’m symptomatic with ME/CFS and looking deeper, I have signs of iron deficiency (cont.)

All of these markers are below normal or low-normal (standard range in brackets):

Transferrin 2.40g/L (2.50 - 3.80 g/L)

Saturation 18% (16-50%)

Serum Iron 10.1 umol/L (9.0 - 30.4 umol/L)

Based on the paper above, and these results, I should be considered iron deficient.

It makes sense to me to use the definition of iron deficiency used in heart failure for those of us with #MEcfs and associated illnesses:

ferritin level <100 μg/L

OR

ferritin at 100–299 μg/L with transferrin saturation <20%

As per: nejm.org/doi/full/10.10…

Doctors need to be aware of this, because I’ve spoke with so many (so many!!) pwME who have extremely low ferritin (below 20) who aren’t even given tests for transferrin saturation or serum iron levels to investigate further despite being heavily symptomatic #MedTwitter

How many of us could see an improvement in our symptoms with something as simple as iron supplementation or infusions?

Iron deficiency is *hugely* overlooked in medicine. But especially in our symptomatic population, this needs to change.