1. Community
  2. Diabetes and hormone problems
  3. Cushing's Syndrome

I think I might have capillary fragility

Posted , 2 users are following.

sheltielife
sheltielife

Hi, I am new here. I have been diagnosed with having Cushing's Syndrome due to a tumour on my adrenal glands. For years I have had problems with my feet and legs. They are very blotchy, red, hot and painful. The doctors have said that it's nerve damage due to diabetes, but now I keep seeing that it can be caused by Cushing's Syndrome. Is this correct? If so, what can I do to help? I am waiting for the operation to remove the adrenal gland, but until it's done if there is anything that can help this symptom it would be wonderful. Regards Sheltielife

1 like, 16 replies

16 Replies

Next
  • carolyn80777
    carolyn80777 sheltielife

    Posted

    Hi, I am new to this also! I had my adrenal gland removed 3 weeks ago due to an adenoma. I don,t really know the answer to your questions, but hopefully after your op your healing processes will be improved and the problems may resolve even if it is due to Diabetes. My legs have been tender to touch at times, but not in the same way as yours. Mine was due to bruising and swelling. Take care Carolyn. 
    • sheltielife
      sheltielife carolyn80777

      Posted

      Hi, I too have poor healing and bruise easily and so it's probably the same as yours, except mine has been going on for many years.  The main problem is that the doctors keep insisting that it's due to my diabetes and I don't think it is. I do also have swelling.  Nice to know that 3 weeks after the op your are getting better.  My op is on 9th February  On top of this I have just found out that my husband has terminal cancer with only months to live.  What was it like immediately after? Regards Julia
    • carolyn80777
      carolyn80777 sheltielife

      Posted

      So sorry to hear about your husband,that's terrible. Have you got to wait till Feb next year? Surely not! I had an open Adrenalectomy, which was quite a major op. The surgeon said the incision would be 3-4 inches, but actually  it's 6 1/2 inches! I had a Morphine PCA which was brilliant, I could just press the button before moving and the pain was not too bad once sitting or lying.I did have some nasty shoulder tip pain due to wind on a few occasions.That was after the PCA was down and I had a dose of Oromorph and Codeine, which was effective. I was discharged on day 5 with an enormous pharmacy bag,( 3 boxes of Enoxaparin and loads of laxatives!) I was so glad to get home as I was fed up of being pricked every day for Cortisol levels and  cannulas ect. I felt very bruised. I took regular Paracetamol, and Codeine in the evenings and night for nearly a week. Now I just take very occasional paracetamol.I still get some wind pains and the area around thewound stiffens up when I have been still for a while. I can't eat large amounts as I get uncomfortable and nauseous, the wound is close to my stomach under my left bottom rib. That is probably doing me a favour! I took Hydrocortisone 40mg for the first week and now I am on 20mg a day until the Synacthen test which should be the beginning of May. I shall pray for you and your husband. Carolyn.
    • sheltielife
      sheltielife carolyn80777

      Posted

      Hi Carolyn,

      Sorry, I put the wrong date it is May 9th the date of my op! Mine isn’t planned for the open op, but things can change. So, mine hopefully won’t be as bad as yours. I already take strong pain killers for rheumatoid arthritis so they will be alright when I get home. I have been told I will have to be on hydrocortisone for a while until my other adrenal gland realises that it needs to work harder. Thanks for praying for us. I will report back after my op. Julia

    • sheltielife
      sheltielife carolyn80777

      Posted

      Hi Caroly,

      Well, I'm still here.  The op went really well, the surgeon was very pleased with how it went.  However, that's more than I can say about the hospital, the care was awful and I was discharged on Sunday.  My husband rang the surgeon's secretary on Monday and he rang us back that evening.  He was amazed that I had been discharged so quick, but I just wanted to get out of there.  I didn't feel great at first, but I am getting there. I am currently on 20mg of hydrortisone until my other adrenal gland works as two.  This is just a quick reply.  Julia

    • carolyn80777
      carolyn80777 sheltielife

      Posted

      Glad to hear you are ok. I hope you are not getting too much wind pain. Which hospital was it? Carolyn.
    • sheltielife
      sheltielife carolyn80777

      Posted

      Hi, I did have some wind, but not bad.  The pain from the op is not much at all, more due to the bruising, where the camera went in.  What I am amazed about his how quickly my swelling has gone down.  My face looks more like it used to and when I was measured for socks prior to the op my calf measured 17 inches and now it's 14.  I have already lost about a stone and a half in weight. I used to be really slim, but for many years I haven't been able to lose weight even on a strict diet. I am looking forward to going on a shopping spree so that I can buy clothes I  like, rather than ones to prevent me looking overweight!  The hospital was the Royal Cornwall Hospital (Treliske), which a friend of mine called Trerisk!  I  now have to concentrate on my husband, as he has terminal cancer!  He goes for a PET scan at Plymouth tomorrow when they will know for certain.  His doctor said originally that he only had months to live, but they have been wrong before.

      Where are you from?  I came from Middleton near Rochale originally, but moved to Cornwall in 1997 when my husband retired. I am on 10 mgs of hyrocortison in the morning and 5 mgs at lunchtime.  My GP has been told to monitor me and reduce the dose accordingly.  He was having to look into what tests should be done, as the hospital haven't told him, so I will email him to say that it's what you are having. Julia

  • sheltielife
    sheltielife

    Posted

    Hi All, It's now 3 weeks last Friday since my op.  Things are slowly improving.  My muscles are getting stronger and my blood pressure is going down and I am losing some of my weight.  However, I still haven't had my levels checked.  The surgeon said he would ask the endocrine man for a quick appointment and that was 3 weeks ago last Monday. I hadn't heard a thing and so I rang the booking office, who told me that there was one made for 14th July.  I expressed my concern as that isn't a quick appointment and she made me an earlier one for 26th of this month, which I think is still too long.  I am wondering if this is alright?
  • carolyn80777
    carolyn80777 sheltielife

    Posted

    HI, I have just had my Synacthen test this morning. I don't know when I will get the results,so I just have to continue on 20mg hydrocortisone till then. The weight is dropping off, which is great, but is because I haven't got much appetite, very strange! I also feel anxious and depressed since i had a period. So I'm hoping that might be due to fluctuating hormones and that it will go soon. I live near Kettering in Nothamptonshire. I used to live in Bude when I was 3 years old. My mum is from Rochdale.How is your husband? Take care Carolyn
  • carolyn80777
    carolyn80777 sheltielife

    Posted

    HI, my consultant phoned on Friday with my results. My right adrenal gland is completely flat. There was no response to to the injection at all,so I have to stay on hydrocortisone. I don't think there is any urgency to have the test quickly, although it seems a long time and you probably want to get off Hydrocortisone. I was worried that 20mg would stop me producing my own, but that is only enough to keep me "ticking over". I hope you and your husband are ok.
  • sheltielife
    sheltielife

    Posted

    Hi Carolyn,   Oh dear, doesn't sound as if your other adrenal gland is improving to compensate for your other one.  I have now got my appointment for the endocrine man, but it isn't until 26th June and it's only after that he will arrange the test. It seems a long time to wait.  I am also having a very rapid pulse still and I am wondering if it's because I am still on metformin for diabetes.  I know that Cushing's can cause an increase in glucose and I am wondering if I shouldn't be on the metformin.  My husband has just had his week's radiotherapy, which they say will extend his life for another 6 months. It's been hard work though driving as the hospital is a 50 mile round trip and he isn't fit to drive after the treatment. Regards Julia
  • sheltielife
    sheltielife

    Posted

    Hi all, my husband passed away on 1st November, it was a horrible death for him. His funeral was last Thursday.  When they took my left adrenal gland out the histology showed hyperplasia.  The dreadful thing is that my symptoms are coming back and I haved heard that with hyperplasia you sometimes have to have the other gland removed.  I now have an ulcer at the back of my heel, which is really worrying me.  I still have my problem with my feet and legs being very red and a burning pain.  My glucose is going up again! I am wondering if anybody has any idea if often your other gland starts to over produce sometimes. I have only had one cortisol test in July done and I thought it should be checked more often, any thoughts?
    • carolyn80777
      carolyn80777 sheltielife

      Posted

      Hi, I'm  so sorry about your husband, at least his pain is over. I'm afraid I don't know anything about Adrenal Hyperplasia. You will have to keep going back to the doctors. I would have thought it would  be good to have it checked about 6mths post op. I had a Cortisone Day curve test in Oct. Adrenal still not working. Take care carolyn x
  • sheltielife
    sheltielife

    Posted

    Well, it was a relief that Bob passed away, it was awful watching him suffer.  Sorry your other gland isn't working yet.  Well, at least my GP is having a dexamethasone suppression test done now. I have to have a pill the night before and then go to the surgery at 9 a.m. the following day to have a blood sample taken.  I just hope I can drive by then, as I have a foot ulcer on the back of my left heel and at the moment I can't drive. I have the district nurse coming and she has put a decent dressing on and it feels a lot better. She is coming again tomorrow and so I hope it looks better then.
Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.