Discussions By Condition: I cannot get a diagnosis.

Undiagnosed Iron Deficiency Anaemia after 5 years

Posted In: I cannot get a diagnosis. 1 Replies
  • Posted By: amy.l.johnson
  • May 8, 2012
  • 10:00 PM

Hi. I am a 25 year old Caucasian female who, from the age of 20, has suffered with chronic acuta iron deficiency anaemia. At the start of my illness my haemaglobin dropped to about 4.5 which resulted in me being rushed to hospital for blood transfusions. After the transfusions my haemaglobin dropped to 6 within a month, prompting another stint in hospital; after those transfusions my haemoglobin dropped to an all time low of 3.9 after a month and a half. During this time I had a endoscopy and a colonoscopy, to no avail. I have been seen by thousands of doctors it seems, none with any answers. I have had ever test going (to date: 3 x endoscopy, 3 x colonoscopy, 2 x capsule endoscopy, push enteroscopy, balloon endoscopy, coeliac disease screening, 2 x bone marrow aspirations, chrones disease screening, barium meal test, meckel's scan, tests for any autoimmune disease possible). Unfortunately I cannot absorb oral iron supplements, malabsorption meant that my ferritin levels remained almost non-existant so I moved onto an intravenous preparation. I cannot recall how much iron preparation I have received over the years, but I do know that my consultants, both haematology and gastroenterology, are stumped as to what is causing my acute iron deficiency anaemia (IT IS NOT MY DIET!). I have lost faith in my consultants and this is ruining what is supposed to be the 'best years of my life'. I have been discharged from haematology, they do not think that it is their domain, yet they still accept me for treatment as and when I require it. Everybody is convinced it is a gastro problem, but all they are looking for is a bleed and I cannot see how it can be this (I have no heavy blood loss, I don't even have periods). They have suggested a procedure using Heparin, where they want to admit me, administer the heparin to try and induce bleeding and then get me into surgery immediatly. This is a novel procedure, there is a lot of questions I feel they cannot answer, it is not readily carried out, and as I say, I am unconvinced it is caused by a bleed. I really am at my wits end, I don't know where to turn to next. If you can, PLEASE HELP ME!! Any information would be useful. Thank you for taking the time to read my cry for help.

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  • Hi Amy. I came across your post on a Google search and was intrigued. I am a hematologist with a special interest in iron deficiency. Did your problem get solved? What happened?
    Anonymous 1 Replies
    • January 13, 2018
    • 00:53 PM
    • 0
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