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Diagnosed with angiomyolipoma feeling unwell

Posted , 5 users are following.

margaret22116
margaret22116

hi I have recently been diagnosed with an angiomyolipoma. Haven't yet seen a nephrologist. I am wondering about others experience of this. Anyone felt unwell with it?? It says online it is usually unsymptomatic but I have been feeling a bit unwell. I do have auto immune disease but that is usually well controlled at the moment. So not sure if the unwell feeling is due to the angiomyolipoma or other issues. Any feedback appreciated. 

0 likes, 21 replies

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  • jazzyanne
    jazzyanne margaret22116

    Posted

    hi margaret in what way are you feeling unwell, ive been really unwell with uti over the past year am waiting on ultasounds, i also have high cortisol which can sometimes mean something is growing on your kidneys have you ever had your cortisol checked 

    x

    • margaret22116
      margaret22116 jazzyanne

      Posted

      Hi I don't think so. I will ask GP.

      So I am confusing because I have auto immune disease and symptoms could be that as similar. But that is so well controlled and the real jey symptoms not coming back.

      I feel tired generally run down. I am experiencing hair loss and muscle pain. Getting twinges of pain in that area. Difficulty sleeping. All vague. So my gp discussing my hair loss with me says I just may have carcinoid syndrome. I am waiting to see a dermatologist about the scalp. And then I get this diagnosis. It is really quite general mallaise.

    • jazzyanne
      jazzyanne margaret22116

      Posted

      hi marg. you should get your cortisol checked mine is high which means i may have cushings, whichs causes hair loss muscle pain difficulty sleeping weight gain, anxiety , i have low b12 and vit d also
    • margaret22116
      margaret22116 jazzyanne

      Posted

      Hi Anne...did you ever get anywhere re a diagnosis. Saw a really nice doc yesterday at King's College. He is a professor and pioneering surgeon. Very knowledgeable and really good. He said my symptoms not likely to be related to the growth in my kidney. And a lot of things are beginning to settle down.

      Am wondering if my symptoms which are still ongoing are b12 related. Just repeated my blood test. There may be an absorption problem. Did you ever have your b12 rechecked? Can make you feel lousy if it is low xx

  • janet89368
    janet89368 margaret22116

    Posted

    Hi Margaret

    I was dagnosed with my first Angiomyolipoma on left kidney in 2009 (currently jyst over 3 cms) and then one on my right kidney in 2015 which is only small so not got accurate measurement until I see my Consultant on 18 October.

    They are being monitored annually via Ultrasound but, originally, I was told treatment would be offered when they reach 4cms as they become more unpredictable then, but now the goalposts have been moved and nothing will be done till they reach 5 cms.

    I do not have any symptoms as yet. 

    Hope this helps you.

    Best wishes

    Janet

    • margaret22116
      margaret22116 janet89368

      Posted

      Thanks Janet. Yes I read they are mostly symptomless so I don't know it is related but just wondered. Thanks

  • margaret22116
    margaret22116

    Posted

    I also wondered....as I haven't seen the nephrologist yet....are we more likely to develop a cancer because of this??

  • jazzyanne
    jazzyanne margaret22116

    Posted

    meant to say margaret cortisol is also  hormone
    • margaret22116
      margaret22116 jazzyanne

      Posted

      Ok. Interesting in light of my current symptoms isn't it. Thanks. Back to GP or push for my referral to nephrologist! Thank you.

    • margaret22116
      margaret22116 jazzyanne

      Posted

      hi, I will do - am getting a bit worried now to be honest. I have a lot of symptoms of Cushing's as it happens. Have e mailed my gp today as it turns out my referral hasn't even been sent! Weeks down the line! I am totally fed up. I will update you when I get seen but am thinking this will take ages now. x

    • margaret22116
      margaret22116 jazzyanne

      Posted

      Can I just ask if you were on steroid treatment? Just wondered if that is why you had high cortisol x
    • jazzyanne
      jazzyanne margaret22116

      Posted

      hi margaret people in the uk find it really hard to get  cushings dianoised there is loads of tests bloods urine salvia , i was on steriods for 10 days after a op 10 years ago,have u ever been on them
    • margaret22116
      margaret22116 jazzyanne

      Posted

      Only a couple of short bursts. I took them fir auto immune flares. But see online cortisol can be produced in body because of tumours.
    • jazzyanne
      jazzyanne margaret22116

      Posted

      yes usually the pit gland or adrenals gland  are you on the net i will pm you via the site
    • margaret22116
      margaret22116 jazzyanne

      Posted

      thanks for your input. I have today asked to join the Cushings group on fb and also phoned hospital and had a bit of a mental meltdown with them about not being given a follow up appointment in all this time. Over a year now since it was discovered and I am feeling rotten. Now worried about Cushing's. All I need at the moment. Already have one awful auto immune disease going on so don't need this on top of that. 

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