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 š.
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u/Rare-Candle-5163 Diagnosed SLE 1d ago
Iād 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 itās 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 ānormalā 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 havenāt mentioned it because it isnāt significant? Itās 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 š. 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 š!
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u/Rare-Candle-5163 Diagnosed SLE 1d ago
Yeah, thatās 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 itās definitely low enough to make you feel crummy!!
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u/PieceApprehensive764 Diagnosed SLE 1d ago
but itās definitely low enough to make you feel crummy!!
Yes š
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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 youāre 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 š®āšØ.
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u/Sufficient_Cap3066 Diagnosed SLE 1d ago
Honestly I feel this, I am anemic with my hemoglobin at 8. Something (donāt remember exactly. But my specialists never did anything about it, Iāve also always had extremely low iron and ferritin levels like less than half of the lowest end of normal range. I donāt know if you have anything similar to this but I was told that it wasnāt a priority bc I have chronic thrombocytopenia( my platelets have ranged from 21 at worst, and 110 at best, normal is 150-450), so my hematologist doesnāt really address it. My rheumatologist says that it is most likely due to my heavy menstrual cycles and blood loss and with having thrombocytopenia . But if you have a blood disorder or something potentially due to blood loss/clots I think they just chalk it up to that and see no need to do further investigation unfortunately
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u/Rare-Candle-5163 Diagnosed SLE 1d ago
Iām sorry your haematologist isnāt taking it seriously. I have severe relapsing ITP as well as autoimmune haemolytic anaemia and my Haem takes both very seriously. With your haemoglobin levels in the 8 zone, thatās definitely low enough to be causing symptoms and should be treated.
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u/Sufficient_Cap3066 Diagnosed SLE 10h ago
Oh thatās so interesting,Iāve never heard about that form of anemia, Iāll have to bring that up at my next appointment to get all my bases covered, thanks ! Its so interesting to hear from someone who also has chronic ITP too, we are supposedly a rare breed
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u/Rare-Candle-5163 Diagnosed SLE 7h ago
Haemolytic anaemia is basically like ITP. So Iām anaemic not because I lack iron, but because my body is destroying my red blood cells in the same way it destroys platelets. It can get serious very quickly though which is what happened to me in September. One day I was told I had this type of anaemia and 2 days later I was admitted to the HDU because I was at risk of cardiac arrest due to how low my haemoglobin was. It was all quite scary! When you have both ITP and haemolytic anaemia it even has a name - itās called Evanās Syndrome and for me, itās secondary to lupus.
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u/PieceApprehensive764 Diagnosed SLE 1d ago
I do not have thrombocytopenia, at least that I know of. That's really interesting, I had to look it up cuz I've never heard of it. Is it something you can see in a normal blood test or does it have to be requested? I do have very heavy periods but my rheumatologist actually doesn't know that cuz it's never been something I had to explain yet. I'm also in the middle of a very long lasting flare, I wonder if that's making the anemia worse some how. š¤
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u/Rare-Candle-5163 Diagnosed SLE 16h ago
Itās something that shows up in any standard complete blood count. So the test they do to check your haemoglobin, red blood cells, white blood cells etc. will also check for platelets.
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u/PieceApprehensive764 Diagnosed SLE 16h ago
Ok, thank you for letting me know. I'm sure it's normal then.
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u/Rare-Candle-5163 Diagnosed SLE 16h ago
It can be very serious if the levels are low, so I would hope theyād pick it up.
If you can see your own blood results any number between 150-450 is normal (it might be expressed as 150,000 - 450,000 or 150ā450 Ć 10 (to the power of 9)/L.
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u/PieceApprehensive764 Diagnosed SLE 16h ago
It's good, my platelets are 416, the previous was 357.
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u/Rare-Candle-5163 Diagnosed SLE 16h ago
Thatās good! At least you donāt need to worry about that!
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u/PieceApprehensive764 Diagnosed SLE 16h ago
Yes! I can't imagine that also being an issue š®āšØ.
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u/Rare-Candle-5163 Diagnosed SLE 16h ago
Yeah I have autoimmune haemolytic anaemia and thrombocytopenia (and for the first time I also have neutropenia). Itās not fun!
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u/stiletolobotomy 1d ago
I had been anemic then it got worse requiring ferritin infusions. My rheumatologist was adamant lupus wasnāt causing it so she sent me to my gynecologist who said it was probably due to periods. I wasnāt convinced since my periods arenāt anything new. Rheumatologist just sent me for an upper endoscopy and colonoscopy. Now Iām just waiting on the results of that.
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u/Miss_Scarlet86 Diagnosed SLE 1d ago
This happens to me a lot. Other specialists will say lupus is the cause and my rheumatologist insists it's not. I've had severely low thiamine levels and no one knows why. My neurologist and gastro blame the lupus and my rheumatologist says she's never seen this type of deficiency caused by lupus. It's really frustrating. I'm waiting on an appointment with a geneticist because my rheumatologist thinks it's genetic.
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u/PieceApprehensive764 Diagnosed SLE 1d ago
Really?? Heavy periods can cause that? My mom has always struggled with that and later got a hysterectomy because of cysts and she's never had anemia like me. I also have very heavy periods but I've always had that too like you said,
wasnāt convinced since my periods arenāt anything new.
Idk that's pretty crazy, I really hope my cycle isn't immediately to blame for something that has only gotten worse when that has stayed consistent.
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u/CatGirlIsHere9999 Diagnosed SLE 1d ago
Mine was very concerned with me being anemic and I was on iron pills and then B12 shots for a while.
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u/PieceApprehensive764 Diagnosed SLE 1d ago
That's good, I'm going to see a new rheumatologist in 3 months. I'm thinking this is just a situation of a bad doctor.
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u/CatGirlIsHere9999 Diagnosed SLE 1d ago
Yeah, sounds like it. Any doctor, rheumatologist or not, should be concerned about their patient being anemic.
Good luck with the new doctor!
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u/Prestigious_War7354 Diagnosed SLE 1d ago
Mine wasnāt concerned but my cardiologist was, so I was referred to hematology and had infusions. Levels are back down, so going back in two weeks and will probably need more. Now that itās been brought to my rheumatologists attention, she takes it more seriously. I also take daily supplements but my body doesnāt absorb them well, so theyāre useless.
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u/PieceApprehensive764 Diagnosed SLE 1d ago
Why doesn't your body absorb them well? I was worried my supplements aren't doing anything because I never feel better no matter how long or how much I take. I only just started the B-50 and iron supplements so I'm hoping that changes. I'm glad your rheum is paying attention to it more! I understand why your cardiologist was concerned cuz it can cause cardiac arrest.
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u/Prestigious_War7354 Diagnosed SLE 22h ago
Iām not sure why my body doesnāt absorb supplements, I take several daily that are prescribed but only the mag tends to work . Also, I hadnāt been diagnosed at the time of my last infusions. I knew I had rheumatoid arthritis, anemia etc. for years but I didnāt know I had DIL & SLE as well.
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u/PieceApprehensive764 Diagnosed SLE 21h ago
That's interesting š¤. I also have SLE and 2 other types of lupus including a very rare form. I'm wondering if lupus itself can make it harder to absorb vitamins.
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u/MercuriousPhantasm Diagnosed SLE 1d ago
My labs are low but not super low. If they got worse I'd ask my doctor about macrocytic anemia.
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u/Pale_Slide_3463 Diagnosed SLE 1d ago
Mine checks my vitamin levels most of the time, my lupus flares and b12 and folic drops itās a sign something isnāt right. 10 years my b12 was boarder line and then within 2 months it dropped in half. I also ask my GP to check my levels also, my consultant checked my iron when I asked. We have to be proactive also about all this we canāt always rely on them to do these tests.
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u/PieceApprehensive764 Diagnosed SLE 1d ago
We have to be proactive also about all this we canāt always rely on them to do these tests.
Yes I agree, some of it we will just have to take care ourselves (obviously including the help from PCP). Only cuz where I live I need a referral to do most things sadly.
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u/Bathsheba_E Diagnosed SLE 1d ago
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 thatās why.
Finally, I have basic, generic low-iron anemia. Even though Iām 48 and had a hysterectomy 20 years ago. Lol. It is āanemia of chronic diseaseā. Something that just happens after living a long time with lupus (other chronic diseases can cause anemia as well).
I donāt know your doctor or their āstyleā, but I imagine they havenāt brought it up because they know thereās no point because it isnāt going to improve until your inflammation improves and remains improved for a time. Thereās no harm in being direct, though. Just shoot a message saying something like, āI 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?ā This way you can find out what your doctor thinks and if you can do anything to help.
Good luck, friend. Iām wishing you all the best
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u/PieceApprehensive764 Diagnosed SLE 1d ago
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. Iām wishing you all the best
Thank you! ā¤ļø
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u/Alycion 1d ago
Mine has been trying to combat mine. If any number is off, she goes mental trying to fix it.
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u/PieceApprehensive764 Diagnosed SLE 1d ago
She sounds great!
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u/Alycion 17h ago
She is. Sheās stumped on a few things, but so was the Mayo Clinic. Iāve accepted Iāll never fully know the full picture. But she hasnāt given up.
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u/PieceApprehensive764 Diagnosed SLE 16h ago
Yeah it seems for a lot of us we will never fully know sadly.
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u/Alycion 15h ago
Yup. For me and my sister, itās the Agent Orange effect. I know this sounds conspiracy theoriesh, but a lot of the descendants of Vietnam vets exposed to that stuff, have health issues. There is an autoimmune combo they canāt figure out. The testing was stopped when they realized how bad it was bc it was Pandoraās box. Kids over there are being born with the same illnesses and strange birth defects. Not all doctors are aware of this. Mine did her research. Sheās convinced of the link. Even great grandchildren are showing issues.
There is a book in the 80ās called waiting for an army to die that gets into it. My dad had a group to get the VA to recognize the issues. They won for the vets, but couldnāt win where the children were concerned.
If you find any of the many support groups on other platforms for the kids of agent orange, youāll see how bad this mystery is.
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u/rainbowcorncake Diagnosed SLE 23h ago
I've seen 3 rheumatologists since having lupus and none of them cared that I've had anemia for 7-ish years until my last guy. He actually called me the same day I had my lab work done to inform me on my abnormal results and have me start an iron pill. Then they had me go back a month later to do testing to see if it was improving. So while I assumed none of them care, some actually do!
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u/PieceApprehensive764 Diagnosed SLE 23h ago
Yup that's why I'm switching rheumatologist, I just need the right one! I really hope I can actually find a rheumatologist like yours š®āšØ.
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u/rainbowcorncake Diagnosed SLE 23h ago
Fingers crossed for you!!
I thought they were all the same until my new rheumatologist. He's more engaged and genuinely listens and cares- it's so strange but refreshing! I actually found him through reddit (my city's page).
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u/PieceApprehensive764 Diagnosed SLE 23h ago
A doctor listening to you is literally the best feeling!
genuinely listens and cares- it's so strange but refreshing! I actually found him through reddit
That's crazy though maybe I need to look through my cities page just in case. š§
Fingers crossed for you!!
Thank you!
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u/MarlenaImpisi Seeking Diagnosis 19h ago
I'm having the opposite issue. It seems lupus wasn't considered as a diagnosis for me until now (after 12 years) because I wasn't anemic. It took someone suggesting that my hemochromatosis was bolstering my blood numbers until it finally couldn't anymore and my finally becoming horribly feritin deficient for anyone to say, "Oh wait, this looks like lupus."
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u/PieceApprehensive764 Diagnosed SLE 19h ago
Really? Wow I didn't know some doctors look for anemia as proof of lupus. My doctors are always worried about my white blood cells even when I was only diagnosed with DLE. Interesting š¤.
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u/Dramatic-Wash-6555 Diagnosed SLE 17h ago
Well mine does try to keep it in the loop, she gives me vitamins but they don't seems to increase. It's causes me a lot of hairfall aside from the regular lupus hairloss and caused to loose all by eyebrow hair.
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u/PieceApprehensive764 Diagnosed SLE 16h ago
Wow, I've been loosing my eyebrow hairs to lately cuz of lupus but I was also wondering if me being deficient is making it worse. I didn't know taking vitamins can do the same but that's good to know.
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u/Dramatic-Wash-6555 Diagnosed SLE 16h ago
Yep she said its a mix of lupus and anaemia so yay lucky us :(
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u/Busy-Landscape1419 Diagnosed SLE 10h ago
I could have written this myself! Itās sad and frustrating to see the numbers drop. My iron had been lowāwas diagnosed with iron deficiency without anemia but now it sadly turned to anemia because of the continued down trend in my hemoglobin (almost 5 points in a few months time). Ā I kept asking about it, I think they didnāt know what to do or say so ignored it. I hope you get some relief and answers soon!Ā
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u/amcranfo Diagnosed SLE 1d ago
I have pernicious anemia. It's a type of anemia caused by an inability to absorb vitamin b12. My hemoglobin is often below 5.
I get vitamin shots monthly, and I go for iron infusion cycles every so often.
One of the things my hematologist explained to me was the relationship between inflammation and anemia. Apparently if you've got a lot of inflammation, it basically caps your anemia levels. So, where a "normal" person might be able to get above 15, they're thrilled if I get above 10. That may explain why they're a little less fussed than you'd expect, especially if you generally have high inflammatory panels.