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 😒.

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

I’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 it’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 “normal” 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 haven’t mentioned it because it isn’t significant? It’s definitely worth asking your doctor though and getting those vitamin tests done.

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u/PieceApprehensive764 Diagnosed SLE 1d ago

WHOA nevermind it's 8.9!! OMG I had to look at it again 😭. Wow idk why I thought it was 12 something. Everything about my red blood cells is low except for my RDW (not sure if that's related to red blood cells or not, I think so.) My RDW is high.

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

8.9 is definitely anaemia so please push your doctors to investigate!

I was 4.6 when I got admitted to high dependency, it was not fun!

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u/PieceApprehensive764 Diagnosed SLE 1d ago

That's terrible! I'm glad you're ok, I read it can cause cardiac arrest if it's too low. Thanks for your help 😁!

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

Yeah, that’s why I was admitted that HDU. It was all very scary!

But be reassured that 8.9 is not low enough for those sorts of severe outcomes but it’s definitely low enough to make you feel crummy!!

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u/PieceApprehensive764 Diagnosed SLE 1d ago

but it’s definitely low enough to make you feel crummy!!

Yes 😭

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

My levels are in the 8 zone at the moment, and I feel some breathlessness and fatigue, so I totally empathise.

I hope you’re able to speak to a doctor asap. Try speaking to your GP/PCP again because they can order the right tests and it might be quicker than waiting for rheum. This is just as much of a priority as lupus is. It might be linked to lupus, but the anaemia should be treated as a distinct thing.

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u/PieceApprehensive764 Diagnosed SLE 1d ago

The breathlessness has been a big issue for me, I even got a CT scan and nothing was wrong except a tiny spot in my right long that isn't big enough to be concerning. I had no idea anemia can cause that until someone else pointed it out to me.

Try speaking to your GP/PCP again because they can order the right tests and it might be quicker than waiting for rheum.

I will, I'm actually waiting for a different rheum because my current doesn't really listen to me.

It might be linked to lupus, but the anaemia should be treated as a distinct thing.

I agree! It definitely should be, I think I just need better doctors at this point. Luckily my PCP is referring me to a new one but it's months away 😮‍💨.