Kind of wondering…

[Willow7733]

Since the past four years, I have been having trouble with my hemoglobin. I am always becoming severely anemic. When I was in the hospital last year, they needed to give me two blood transfusions and six iron infusions.

I was seen by a gynaecologist, (she is awesome!!), and it was determined des that maybe the huge fibroids I have were pet of my blood clotting problem and anemia. Had a hysterectomy last October 28th.

Last month my rheumatologist ran usual blood tests (I get them every 3 months.). And it shows my hemoglobin is low again! 🤷‍♀️ I had the hysterectomy to solve that problem. Not only that, but I have had two more pulmonary embolisms since the hysterectomy too. It didn’t solve anything.

I am new yo my lupus diagnosis, could lupus cause anemia? My platelets are high, which is weird because I don’t have any infections. And my eGFR shows mild kidney damage. Can any of this be related to lupus?

I have a phobia of talking to doctors, and I just want to be ready for my next phone appointment, armed with questions to ask so I get a better idea of what is going on. Thank you for any info you can give me to help with my next rheumatologist appointment.

[suzannah16]

I've no idea if it's lupus but I was always getting anaemia and tablets didn't help so I was given an iron infusion and told that would "cure" me. I then had another infusion a few years later and am on iron tablets too. just seems to be ongoing.

[Spanielmadlady]

Hi.Some 60% of lupies have kidney involvement without being aware of it .the only was to be certain is to have a kidney biopsy.i have class v lupus nephritis diagnosed by biopsy in 2018. Anaemia is also common amongst us.i have b12 deficiency anaemia which is auto immune and if you have 1 AI illness you are more likely to have another as they often go hand in hand .Good luck with your next appointment try to get over phobia of talking to doctors unfortunately there is no getting away from them ...we need them for a long time x

[Suvi8901]

Get your serum vitamin B12 levels checked ASAP!Normal will be ( but labs will differ): 200-500 ng/L or 200-500pg/ml. Pernicious anemia?

Due to 2 year lockdown neglect my GP finally rings me to say my levels have been dropping now at 137ng/L😱😥.

Many times I rang for an appointment but gave up not being able to get through triaged by the receptionist!🥺

It seems many lupus sufferers lose intrinsic factor so cannot absorb this vitamin due to Al destruction of intrinsic factor in the gut. Ironically I was taking vit B12 supplements daily but these molecules weren’t being absorbed. I’m now on intramuscular injections 3 doses per week for a fortnight and then quarterly lifelong!👆🥺 Certainly feel an improvement. Can Wordle better🤣.

There was I thinking that my fatigue, ataxia, dizziness, giddiness, strange gait etc and brain fog were all due to lupus?? 🧐

No, it’s also due to vit B12 DEFICIENCY.

Very similar symptoms.😱

Also get test done for intrinsic factor autoantibodies!

This can be treated but unfortunately it was missed for too long in my case.

Regards