shock diagnoses

Hi, I have not been on here recently, however I have just been told that I have leukaemia, I have had a spate of kidney infections and they took my blood count after having my 3rd in 6months. as you can imagine I have been scared stiff, as I have had 2 people die from it in my family and my uncle has it at present. anyway after a 2 week wait I finally got to see the consultant, she informs me I have neutropenia which is a low white blood count, and a blood disorder which means my bone marrow is not working. I have been reading up on symptoms, which include sore mouth, bad teeth, sinus problems, and breathing difficulties, and more on list, and with genetic neutropenia stunted growth. Mostly all these things I have suffered with my entire life, except breathing difficulties. They do not know what is the cause yet, and I am going for numerous tests to find out. What I would like to know is if I have had this my entire life, how on earth did they not find out sooner, when I was little and found out I had an underactive thyroid for growth problems, or even when I had my 3 children by caesarean section. ? or is it something else like my kidneys that are failing that have caused it. I also read that taking medication for hyperthyroid can cause it. If anyone has any information I would be most grateful, I daresay they will find out later, rather than sooner, but if I have some knowledge I will be able to help myself, as I don't trust the doctors anymore than I can throw them, especially my own useless article who knew since January this year my blood count was low and did not do anything about it. It was only when I pointed out to another doctor my family history that he decided to send me for consultant appointment. Angry and very scared.

4 Replies

  • I'm sorry ((( vickilou ))) that no-one has replied. It's very difficult to know what to say, I think, is part of the issue. This is the worst of having an impaired immune response - cancer.

    Try not to be angry - it will raise your stress levels and that's no good. This has happened and you have to move forward now from your diagnosis.

    Don't be scared. Knowledge is power and I bet there are HU groups to help you through this. Find them and make some new cyber buddies who can share their experiences.

    My very best to you and your family as you find a way to forge on. xx

  • Thank you Rapunzel, I am looking on the neutropenia website forum, and it doesn't necessarily mean doom and gloom, I am still going through the tests to find out what and how I will be treated. I don't feel ill thankfully, just shocked. The neutropenia website has come up with thyroid disease and vitamin B12 problems could be a factor, that's why I wondered if anyone on here would have any thoughts or knowledge. I am very lucky to have a very supportive family and friends and I am trying to stay positive, I am a fighter anyway. Thanks again to you and others for replying.

  • Oh vickilou - so sorry to read about your diagnosis. I am not a doctor but I do know you need to keep strong ( easy for me to say) and focus on getting well and through this. I do not know alot about neutropenia. I do know it is not uncommon and that it can have many causes . I am also aware that not everybody who has neutropenia has cancer. I am presuming they have done all the tests for you and have concluded it is leukaemia. Are the tests you say they will be doing to make sure you get the best possible treatment now ?

    There is a forum site ( or there certainly used to be ) for Neutropenia may find they can advise you - I think they were an American site. Are you in the U.K. ?

    I think you have every right to feel angry -especially if this should have been picked up as far back as January...or beyond. But as Rapunzel said anger can raise your stress levels and you definately don't need extra stress at the moment. Be kind to yourself and focus on getting through this. I am sorry I cannot offer any pearls of wisdom....but will be thinking of you. Hang on in there vickilou and do let us know how you get on

  • Sorry to hear this vickilou, if it was me I would research and try to find out as much as you can about it. As Rapunzel has said, there are bound to be forums you can join to discuss these specific issues with people who are also going through the same thing. I wish you luck and remember you can always keep posting here, even just for a chat. Take care. :-)

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