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Just wondering about this but not tested yet

Posted , 3 users are following.

sheltielife
sheltielife

Hi, I have had lots of illnesses including having Cushing's Syndrome due to my left adrenal gland and rheumatoid arthritis.  I have recently found out that I have very poor circulation and causes me to have really painful feet and legs etc. I have been seeing a vascular man and he did some blood tests and found that my blood is very thick. I have to go for a blood test at hospital on the 13th February that will take between 2 and 4 hours and then see a specialist.  For years doctors have been saying my feet problems are nerve damage due to being diabetic, but it was the adrenal gland pushing my glucose up and now it's going up again. I never thought it was nerved damage and the nerve tests only showed very slight nerve damage not consistent with my symptoms. I told an old friend and he suggested it might be this as he has had it.  My GP said if the test is positive I would have to go for blood letting every week.  Does this sound as if it's the problem. Regards Julia

1 like, 8 replies

8 Replies

  • sheryl37154
    sheryl37154 sheltielife

    Posted

    Always worth being tested for.  Iron Studies is the test you need to have, not just iron. Then if two of the 4 levels are high, and dr might do it twice, then a genetic test should be done.

    Let us know if positive, and search out info on it.  You need to self educate on this to be sure you are being treated properly if you have it.  Talk to your country's haemochromatosis association, and get info from them.

     

    • sheltielife
      sheltielife sheryl37154

      Posted

      I'm not sure what the test is going to be, it just says haematology and I see a Dr. Noble I am in Cornwall and go to the Royal Cornwall Hospital. It didn't even say on the appointment what it was for I asked my GP and he said it was because my blood was thick.  It's supposed to be an urgent appointment. I got it early last week and so to my mind the 13th February isn't quick enough for an urgent appointment but that's the NHS these days!  Perhaps I will find out more what it's about when I get there. I have looked up quite a bit of stuff since last night and it certainly sounds a possibility. If it is it's a good job I don't have any alcohol. However, I have been on iron tablets for years due to bleeding in my stomach and I don't suppose they will help. I haven't had one this morning.  A funny thing to talk about but when I go to the loo my stools are black, I put this down to the iron tablets but I only have one a day and it never used to be like that.
    • megan36105
      megan36105 sheltielife

      Posted

      I agree with Sheryl - when you go in definitely ask that they test your iron/ferritin to make sure that that's covered. I wonder if maybe your tests are similarly labelled like th ones where I am (Canada)? When I went in last year due to feeling more fatigued than usual I had a CBC which is a total blood count test so they look at everything that's in my blood - red, white, plasma, etc. Maybe that's what you are being sent in for?

      And just out of curiosity, before you were put on iron tablets did they check your iron/ferritin levels? If they didn't then your doctor didn't take proper care to be sure that's what your body required.

    • sheltielife
      sheltielife megan36105

      Posted

      Hi, It's so confusing as nobody has told me what they are testing for just that my blood was found to be very thick when the vascular man did some tests and I don't even know what those tests were for. That's the trouble when they don't tell you what they are testing for! Over the years for various things I have had duplicate tests done purely because the person requesting didn't know I had already had the test!

      I was put on the iron tablets as they said I was anaemic due to losing blood in my stomach caused by anti inflammatory drugs, but that was years ago and I don't even know if it's been tested over the past few years. The problem is that I have had that many blood tests to find out in the end that I had Cushing's Syndrome that I don't know what has been tested and when.

  • sheryl37154
    sheryl37154 sheltielife

    Posted

    You can solve that problem with always asking for a copy of the lab results from your dr.

    My blood was often thick and black looking, even up to last year (16.5 yrs after diagnosis) for the first half of my venesections.  My back was always "sore".  A masseuse did some cupping and bleeding before diagnosis and he told me the blood came out black.  We just thought it was something like stagnation, lack of circulation, that was causing the problem.

    Ultimately just on diagnosis, one of my hips broke up from osteonecrosis - my blood was so thick with iron the blood could not get into the finer capilliaries that fed the bone, so the bone died.  I was always complaining about leg and hip pain too.

    Iron Studies is just a quick withdrawal of blood - does not take 2-4 hrs unless one has to wait in line a long time.  Pituitary gland blood tests take a long time, as they get you to drink glucose between taking more blood.  That might include adrenal glands and glucose tests again.

    I usually copy the lab request too before I go to pathologist.  You can always google the 'words' to find out what they mean.

  • sheltielife
    sheltielife

    Posted

    Yes, I always ask for a copy but don't always get it, which isn't right as you are entitled to see them. I would be able to know what they meant as I was a research chemist, but they treat me as thick! I know the blood test is nothing to do with glucose or adrenal problems as  for them I had to have preparation beforehand and there isn't anything with this. I will find out on the day what the test actually is but they say I will see a doctor before and after the test. I was suggested it could be this illness due to a friend having it after I had told him my blood was thick. I have made sure that I have had all test results now from last year. However, I requested them from my old GP had to pay for them and I got all the consultant letters and my medical history but no test results and it was the test results I wanted!  I have since changed my GP practice and so am hoping they will be better.  My original practice missed my husband's diagnosis of cancer of the oesphagus and when he eventually found out it was too late and they said it was terminal and he passed away last November.
    • megan36105
      megan36105 sheltielife

      Posted

      I'm really sorry about what happened to your husband, but I'm very glad that you've changed GPs. It sounds like your last one was negligent in terms of letting you know exactly what was going on.

      And I've had that problem before too - only with nurses and not my doctor - I'd say something to them and they'd talk back to me like I was a child. It makes you feel horrible and you end up kind of shutting down because they make you feel small, which is ridiculous, because you have a complete right to know what's going on and what they're testing YOU for. It's your body, so you can ask whatever questions you want.

      And I assume you're going to a lab for the tests? When you're there why don't you ask them to quickly explain what they're testing you for? Then you could know ahead of time and then you'd also know what you're looking for when you get your test results back. And regardless, don't be afraid to be persistent. If you think that you're pestering your doctor for test results, who cares, it's their job to keep you informed. You shouldn't even have to ask.

    • sheltielife
      sheltielife megan36105

      Posted

      Yes it was awful about my husband but had to prove their negligence. Unfortunately it's the local hospital that are doing the test arranged by my new GP. I live in Cornwall and I don't think there are any local testing places and as I don't know exactly what test they are doing I can't even pay at the private hospital.  I had a blood test for something else at the hospital last year and I knew it should have been kept under ice until it got to the lab at the hospital, but the nurse wasn't doing it. So I said it should be kept under ice and she lost her temper with me saying she had been doing that job for 30 years. I was annoyed and said "Well you haven't been doing it right for 30 years!". Of course she didn't like that one little bit.
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