Image from Pixabay.
Had my yearly check-up with my gastroenterologist yesterday, and he finally decided, after personally following my struggle with iron deficiency for about three years, that an an iron infusion is indicated in my case, even though technically I don’t fulfill the requirements of VSSHP (my hospital region) My hemoglobin is ok right now (six months ago I had anemia), but my iron is currently 38 (30 is empty/no iron in cells at all so 38 is really bad) and it took me over a year to get get to that from 9 (normal rate is 5-10 a month with oral supplements, if it worked like it should, it’d be 60 at minimun. And it keeps plummeting immediately if I pause the supplements). I’ve been hoping for an iron infusion for at least five years!
IBD patients are recommended to have at least 100 even in literature, but talking to other Crohn’s patients here, it’s like that ruling doesn’t exist and majority seem to have levels between 2-50 and doctors say it’s okay and normal 😐 It’s also notable that practically every one of these patients I’ve talked to is a woman – there’s been like 2 men, and dozens of women.
I’ve personally been struggling with low iron/hemoglobin levels for 20 years now… and probably long before because I would faint/almost faint during my period despite not having that much pain, and my periods used to be heavy, but I didn’t know anything about anemia or iron deficiency until 20 years ago when I first had to take an oral iron supplement for more than a year because of iron deficiency. Then after, I kept having to take courses of them every year, and still my hemoglobin would plummet. I was even admitted into hospital in 2008 because my hemoglobin was dangerously low (the nurse who called the lab results said that I must to come to the hospital right now at 8pm, because if I got into an accident I might bleed to death just because my hemoglobin was so bad). That hospital trip is the time from which all my health problems started one by one.
Iron deficiency is a very controversial medical issue here, with general consensus among doctors basically being that it doesn’t matter, only anemia matters. Only a few doctors think good iron levels are important in general, and even fewer think that good iron levels are possible for IBD patients, and if necessary, to treat IBD patients with infusions regularly if they are not. To tell the truth, I’m not even sure my gastroenterologists would have paid as much attention to my iron levels if I didn’t always bring it up with them in each yearly check-up and complain about the exhaustion, headaches, brain fog etc. So now that I’m going to get an iron infusion “to see what it does” and “if your levels get better/stay up”, I feel like I’ve won a small battle! He said that it’s going to be a small infusion (which I guess is better for in case there’s side effects, but may not be enough if the iron deficiency is serious and/or has continued for years). But small is better than none, so I’m happy! And very curious if it’ll do anything to my daily background headache.
Otherwise, other labs are mostly okay – AFOS is a tiny bit elevated and needs to be followed to see how it develops, but he said there’s no reason for alarm yet. ALAT and AFOS (both labs are to do with the liver) are checked every three months anyway, and we’ll keep doing that. ALAT has been acting weirdly the last year or so – it used to be elevated (but tolerated because of the meds I’m on) but suddenly the last year it’s been anything from 25 to 72. So it’s been going up and down a lot. He couldn’t really explain it. Just that if AFOS stays elevated, then MRI needs to be done because liver related diseases are relatively common in IBD patients.
But the really big thing yesterday was the iron infusion news 😀 They should send the invitation letter for the infusion inside the month. I’m happy and excited and also a little anxious because anaphylactic shock is always possible… but mostly I’m excited! This has the possibility to improve my quality of life a lot, if it helps with the exhaustion!
Oh, and wanted also to mention – I only had two actual migraine attacks in February! Ajovy does seem to be working!!! 😀