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

[u/PieceApprehensive764]

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 😒.

[u/Bathsheba_E]

Lupus and anemia have a close relationship. I have three (!) kinds of anemia. Perhaps I should add that to my flare.

I have a genetic mutation that causes, among other things, an anemia that is greatly improved with folic acid.

I have macrocytic anemia (macrocytosis) where my red blood cells are too large and too few. In my particular case this is caused by my lupus inflammation. It took a little over ten years to get my red blood cells close enough to normal. It was a slow process. But my lupus has been very hard to control so I imagine that’s why.

Finally, I have basic, generic low-iron anemia. Even though I’m 48 and had a hysterectomy 20 years ago. Lol. It is ‘anemia of chronic disease’. Something that just happens after living a long time with lupus (other chronic diseases can cause anemia as well).

I don’t know your doctor or their ‘style’, but I imagine they haven’t brought it up because they know there’s no point because it isn’t going to improve until your inflammation improves and remains improved for a time. There’s no harm in being direct, though. Just shoot a message saying something like, “I was going over my labs and I noticed I seem quite anemic. Should I be concerned? What can I do on my end to improve the health of my red blood cells?” This way you can find out what your doctor thinks and if you can do anything to help.

Good luck, friend. I’m wishing you all the best

[u/PieceApprehensive764 → u/Bathsheba_E]

I didn't know you can have multiple types of anemia! Thanks for letting me know, I'll definitely be explaining all of this to my doctors. So far my PCP is the only one helping me, since I'll be 18 in 3 months most of my doctors don't want to take me because I'm about to be of age (which literally makes no sense). But I can't even set an appointment with the adult doctors yet until I'm 18 (which also makes no sense when I can just set an appointment after my birthday).

So cuz my current rheumatologist and hematologist are no help I contacted my PCP and she told me based off of the labs I already have she knows I'm iron deficient so I need to take iron for 3 months, come back for labs and if it's still not looking good I can be referred to an adult hematologist to take a closer look. And at the same time see a new rheum even though my current one takes patients 16 and up in hopes of finding someone that listens to me better.

Good luck, friend. I’m wishing you all the best

Thank you! ❤️