Stuck in limbo

My local consultant still wants to hunt for an anaemia cause but have enlarged spleen.p.hypertension stomach ulcers.had recent endo which showed small varices. .also get some blood am from back of throat which they know about but ignore. ..but still he wants to look elsewhere have had colonoscopy a few years ago ...all clear so why the hunt..has anyone else had the same problem. P.s.have been mildly anaemic for 25years when pregnant with eldest son its now worse but so is the pbc...any others had similar situation? Thanks cazer.

5 Replies

  • Hi there... I have portal hypertension.... Varices banded ... Enlarged spleen and recently became anemic. My Hep wants me to have another colonoscopy (had one two years ago which also was clear) in June at the same time he does endoscopy to check on varices. It seems it is one thing after another with this disease! I hope all goes well for you!

  • Yes! I had severe anaemia when first diagnosed three years ago, that is actually ended up in hospital. They checked everything and then presumed when nothing else showed up that it was the underlying AIH/PBC. Had blood transfusions, iron infusions, iron tablets for 6 months, steroids then imuran and urso. All was fine until last December when my iron went low again, another infusion, back on iron tabs. Lots of tests, colonoscopy etc, ultra sound, CT scan, all looks fine. Last blood test shows iron up again. They just think it's the underlying condition again, might have to stay on the iron tabs! At least they are being sure.

  • Hello caxer.

    My GP wanted me to go in and have cameras 'up and down' back in 2012 due to having a continued one point below normal HB count each time. I had a month of iron tablets back in early 2010 and then another month course end of 2013 and was found to be then normal with the ferritin count. I have in the past had a short course of iron tablets. I did say years ago to one GP that I was experiencing nose bleeds and she just shrugged it off by saying 'Everyone has a nose bleed from time to time' after asking about my menstrual cycle (never had problems there) so I left it.

    I was diagnosed with PBC in Dec 2010 but in 2009 I saw ENT at hospital and was just given some nasal cream after having a camera stuck up my nose. Cream was useless. Nose bleeds continued and I found myself going back and forth to ENT several times during 2011 and 2012. I was discharged from ENT a third time November 2013. So far not been bad and my ferritin levels were OK last count.

    I had read that a slightly lower HB count (it on the Mayo (US) site) can be normal in certain females, the body adjusts. I mentioned this to the GP what mentioned me having the cameras and he agreed but he still said he'd like to find out what was causing anaemia. I told him it was my nose and I knew myself that I had no other problems internally at the time. I still feel I do not and the PBC has been stable for quite some time now. I only take urso, never had any other meds since diagnosis except a bit of nasal cream briefly the odd time from ENT.

    Given my iron (ferritin) levels did go back to what is considered normal after some yrs., the HB too, I still feel it was due to nose bleeding at times. I know for the last 2yrs now I've been going through the change but it is only the last 6 months my cycle has reduced in volume and also in the last 2 years spaced out somewhat so I do not have what was normal for me over the years now.

    I can't say for definite what you should do not being a doctor but I know myself I'd ask a doctor to go through all the abnormal bloods, mainly the full blood count and ask why he feels investigation might be something he is recommending.

    I do think for some females in particular it can be a case that we come up most of the time with a slightly below normal reading for the iron levels but there are apparently different kinds of anaemia too, some dietary linked, others due to blood loss. I don't think years ago I did myself any favours eating very little in what is considered the best form of iron for us, red meat.

  • I have had anaemia for many many years and PBC diagnosed maybe 6 yrs. I take a high dose of iron every day to stop it dropping. I too had every test they put it down to stomache bleed at first and now it is just accepted as there. I have yearly endoscope to check for portal varices ( so far so good) but I do have G.A.V.E Gastric antral vascular ectasia , stomach problem . I would ask to be on a dose of iron to keep it level. Good luck

  • Unfortunately I don't tolerate iron tablets so they gave an iron infusion which yhen in turn gave me terrible period problems....which meant I could hardly get out of the house. Then after that I was surprise surprise anaemic again! Mow they want me to have another infusion! ! Interesting to hear that you ve always had iron troubles. Sorry of repeating self but have come up as anaemic since my first pregnancy..

    Hes now 25!ive had endo in November and have small varices and stomach ulcers but was anaemic way before these thoights are that along with the pbc perhaps that causes poor ironproduction but really can't see the point in this endless hunt. Thanks for thoughts glad to hear it's not just me.from cazer

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