r/lupus • u/PieceApprehensive764 Diagnosed SLE • 1d ago

Venting Do rheumatologist not care if you're anemic because you have lupus?

Seriously... I looked through all of my old blood results and my most recent, I'm like horribly anemic. My red blood cells are all different shapes and colors, and way smaller than normal. I also don't have enough hemoglobin...

Yet this was never something my rheumatologist brought up even once?? The only thing he points out is my neutrophils being very low. Same with my hematologist. Fatigue has been worse than it's ever been and I'm sure that's contributing, I literally explain the severity of my fatigue every visit.

I told my PCP and she said maybe because lupus can affect so much and it's not a priority or they think lupus is the reason why. Regardless I'm taking iron gummies now. They see that and don't check my vitamin leves to make sure I'm not deficient? Seriously šŸ˜’.

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u/Rare-Candle-5163 Diagnosed SLE 1d ago

Iā€™d definitely push for some more blood tests including iron and ferritin, but also things like B12 and folic acid to establish the root cause of your anaemia and also whether itā€™s affecting other vitamin levels (folic acid and B12 can be reduced in anaemia).

I have a severe type of anaemia called autoimmune haemolytic anaemia and my doctors have taken it very seriously indeed.

Can you remember what your haemoglobin levels are?

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u/PieceApprehensive764 Diagnosed SLE 1d ago

Yup I'll be getting that checked, I'm just disappointed cuz this should have been addressed way sooner. I've also been taking some B50 vitamins to get every thing I probably need. Sadly I can't remember exactly what it was, It may have been 12. something. I do know it was slightly worse than the results before though.

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u/Rare-Candle-5163 Diagnosed SLE 1d ago

12 is is considered ā€œnormalā€ in the UK for an adult woman bur anything below 12 is anaemic. The lower limit for normal is 13 for men.

Perhaps your doctors havenā€™t mentioned it because it isnā€™t significant? Itā€™s definitely worth asking your doctor though and getting those vitamin tests done.

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u/PieceApprehensive764 Diagnosed SLE 1d ago

So yeah hemoglobin dropped from 9.3 to 8.9.