Endoscopy and colonoscopy done...

[Willow7733]

When I was admitted to the hospital for multiple blood clots this December, my hemoglobin was very low. They later diagnosed me with lupus. But still, the specialists thought that I must be losing blood somewhere for the severe anemia. I had an endoscopy last week and colonoscopy today and both came out fine. No bleeding. The colonoscopy showed no polyps, no cancer. So now I am wondering what is causing my anemia (had hemoglobin this low twice before, each four years apart). They kept telling me that my suggestion of always having a heavy period can’t be the reason. My anemia was too bad. So...my question now is what could cause this? Could lupus cause low hemoglobin??? There has to be a reason why.

[PMRpro]

There is a form of anaemia called the anaemia of chronic illness. I'd have thought that and in combination with heavy periods could bring it pretty low. Bet they are all men?

[Willow7733 in reply to PMRpro]

Yes! I tried to tell them my periods are very heavy. I don’t think they understand what I am saying. They did refer me to gynaecologist (a woman) and she seemed to take that explanation just fine.

[weathervane in reply to Willow7733]

I had this problem 15 years ago , it was related to heavy periods , i was constantly exhausted and anaemic . I was referred to gynae and had treatment which really helped. I hope you are able to get some help xx

[Willow7733 in reply to weathervane]

I knew that it was a strong possibility of the cause of my problem. . Mine were heavy my whole life. I thought it was normal.

[happytulip]

I am chronically anaemic and I have been told by many doctors that chronic ill health, especially with AI disease caused anaemia. They don't know why for certain vbut it is a recognised thing.

I've tried all the prescription supplements but they upset my stomach to much so I focus of diet instead.

[Salzer in reply to happytulip]

Do you mind if I ask if yours is iron deficiency anaemia or anaemia of chronic disease? I think ferritin levels are the thing that define which it is? I've had iron deficiency anaemia for a number of years now and seem to have no ability to store iron. All the investigations have come to nothing so I've wondered if it's related to the autoimmune disease. Some docs seem to suggest yes, others no. Like you I can't tolerate iron supplements. But tbh apart from losing hair, it doesn't usually bother me that much.

[happytulip in reply to Salzer]

My ferritin was and still sits around 5 and my HBbis usually around 10, or 100 as they call it now.

I can tolerate vthe iron supplements for a certain vperiod of time but then my stomach just gets to upset.

You can purchase iron supplement patches now. My friend bswears by them but I am not sure how effective they are.

[Salzer in reply to happytulip]

My ferritin never gets past 5 or 6 either. A gastroenterologist once asked me how on earth I was still functioning with so little iron on board. I can take the low level iron supplements for a bit too when Hb falls but hate them. Tried and failed to get an infusion so now I just accept it's how it is with me and it doesn't seem to affect me that much unless Hb drops into the 9s. I might look into those patches though! Thanks so much. It helps to know that iron deficiency anaemia can be caused by autoimmune disease. Some unhelpful rheumatologists in the past have told me no way, only anaemia of chronic disease is relevant, it must be my diet!

[happytulip in reply to Salzer]

Just a tip but if you have any foods high in iron then take some vitamin c as bit c helps the absorption. You probably vknow this already.

So if I have a steak I will have two oranges etc. I try to avoid the vit c tablets because I don't want to rev my immune system up to much.