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cushing tests

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paulette37038
paulette37038

I am new to this forum it’s lovely to meet people going through the same experienc.

i have not been well for over two years back and forward to doctor like I am a headcase.. it all started with my hair falling out tremors and unable to work diagnosted with Parkinson’s took medication but my symptoms became worse the fatigue was so bad I could sleep all day. If I try to do anything I would perspire and my heart would race and I would feel sick. Had further test and told not Parkinson but Functional Neurological Disorder no treatment. I no longer go out as I start vomiting and bad pain in my stomach back to doctor further test diagnosed with none functioning gallbladder and fatty liver disease.. I had my gallbladder removed but didn’t come around from operation 40% temperature tachycardia sepsis and ridged muscles they work on me for six hours packing my body with ice and giving medication for Malignant Hyperthermia and transfered me to another hospital ICU. I was so weak could walk my body was swollen it took three week for me to feel myself again. I was okay for a few months but now feel unwell again back to doctors.. I saw a amazing doctor kind caring who said I didn’t look well and was concerned about me.. I had some tests  for the vomiting and pain and a X-ray now told I have diabetes I have put 10 kg in six months

and also have a blockage in my bowel.. I received a phone from my doctor he had put all my symptoms together and rang a endocrinologist and they feel I may have Cushing so having tests next week. I am so lucky my doctor has gone out of his way to talk to me and understand how I am feeling I am at the point of being desperate my mood swing are awful at times I am out of control with anger then I will sob my poor husband has been amazing but I cannot go on like I am.

0 likes, 13 replies

13 Replies

  • cycliccushings
    cycliccushings paulette37038

    Posted

    Paulette

    You are so lucky that you have caring doctors that are going to get to the bottom of what is wrong. I understand your being so upset that this is going on so long. However i been dealing with my issues for over 30 years and am facing possibly my third pituitary surgery. It took them 9 years to diagnose me in the 80s. I had 23 drs and im the first "cyclic" Cushings patient diagnosed in 1989 in the U.S. I know how very devastating the symptoms are and the overwhelming helplessness of trying to get answers from drs who have no clue. So im so happy for you that you have caring drs and they will figure it out..hang in there..it will get better..and lucky you that your husband is supportive and understanding. Mine was cheating on me while i was in hospital. We all care here that you get answers and get well..

    • paulette37038
      paulette37038 cycliccushings

      Posted

      I am so sorry you have endured this disease for 30 yours, your Husband didn’t deserve you and a lot of partners use illness to leave a coward way out. My husband does almost all the housework and cooking, I try and do one job everyday today managed to clean two bathroom I crawl on my hands and knee.

      i have seen four doctors at the practice but they just said they couldn’t unterstand my problems and got know where. When I saw this amazing doctor I felt depleted and just sat and cried.. in a space of a week I have had a scan and other tests I count my bless and I am very greatful. I am to pick up prescription for steroids and to take them at 11 in the evening and blood test at 9 the next morning.. You will know what the test is as over the years you will have had a lot.

      i hope your treatment will go well and hope to read your update.

      i cannot believe how unfit I am I was a Maternity Nurse travelled the world and walk 10 miles a day.

      i was shock when someone took my photo and saw how awful I look and over weight. 

      I hope you have some wonderful family to help you on your journey.

  • cycliccushings
    cycliccushings paulette37038

    Posted

    Paulette..the test you are doing is dexamethasone test..they give you the pill..take exactly at 11 pm..go early enough where you are drawing the blood as it needs to be taken out exactly at the time they say..the pull is supppse to suppress your cortisol ..if it doesnt thats not good. I just did one and mine was corrtisol high 3.8...when l.8 is high..so let me know how you do.
    • paulette37038
      paulette37038 cycliccushings

      Posted

      Hi my results came back normal so I don’t know what to do. I have asked to speak to my doctor but don’t know what to say to him.  Maybe need to go private but not sure of cost we have to watch our pennies as retire but my Husband is very supportive and he want to see me well again. 

  • paulette37038
    paulette37038

    Posted

    I had no blood test today my doctor forgot to write on the form what test I was having I had a form he gave me so the lady that took my blood put in the bag with blood sample which was so kind of her. I may have to go back but fingers crossed I won’t she say results will be back with my doctor in two days. 

    My mood has been so bad I through my iPad at my Daughter but thankfully I missed her I don’t know what comes over me I am so so angry or I sit and cry I think I will need some medication to help me. 

    I am thankful to read all your stories and realise that I have a lot of the symptoms which has helped to understand

  • cycliccushings
    cycliccushings paulette37038

    Posted

    Paulette..i too had uncontrollable rage..when i was in the hospital i would lock my door so the nurses couldn't come in because i would rage at even dropping my pencil on the floor. I just gave another member advice to start writing in a journal daily and if needed write in it a lot to get your feelings and your emotions down on the paper. I also suggested that you use the bible. When you are having a rough day just let it fall open and read those two pages the answer will be there..believe me. If you feel you cant control the rage then seperate your self from the family..your bedroom, the bathroom take a bath or shower to try to stop the rage..be aware of how you are feeling. Its the imbalance of the hormones and hard to know other than knowing you feel out of sorts. Hope these suggestions help.

    • paulette37038
      paulette37038 cycliccushings

      Posted

      The last few days I have slept almost all day the minute I sit down I am asleep I am desperately tired I felt very sick with awful pain in my stomach I finding it difficult to eat but have lost no weight my mood is much better at the moment.. I hope my results are back next week, if negative I don’t know what will happen next..  I might have to go private if I cannot get answers ..
  • paulette37038
    paulette37038

    Posted

    Very disappointed my blood results came back negative. Don’t know what to do now. Wondering if I ask to go private and get some more tests done I cannot go on the way I am. Don’t know how much test will cost will look into it. Just need to fine a good endocrinologist so will look on the internet. 
    • cycliccushings
      cycliccushings paulette37038

      Posted

      Paulette Where do you live?

      What tests have you done? 24 hour urine? 48 hour urine? Saliva tests? Other blood tests..like tsh and t4?

      Have they tested to see what your ATCH level is? None of us Cushing's patients are the same..we all have different symptoms..

      and if cyclic the tests will come up normal they need to repeat them..let me know the answers to these questions ..then ill try to advise you what to do in asking the dr for a next testing step.

      Pam

    • paulette37038
      paulette37038 cycliccushings

      Posted

      Hi I had the Dexamethasone test medication at 11pm blood test at 9am that’s the only text I have had done so far, if my Doctor says I don’t need more test I will have to find away myself.. I live in Kent so need to look for a endocrinologist in Kent or maybe London..
    • cycliccushings
      cycliccushings paulette37038

      Posted

      Paulette

      Ahhh you live in England..i live in the U.S. so my situation is different..as the drs and hospitals i think are run differently. You can ask the dr to do both of these..

      do 24 hour urine test and also check for ATCH levels.

      Because the issue could be on your Adrenal Glands and not your pituitary. Im hoping you can reach out to your drs and discuss your options.

    • paulette37038
      paulette37038 cycliccushings

      Posted

      Hi thank you for your help I will do that.. it difficult getting an appointment so  doctor with call for phone conversations..
    • paulette37038
      paulette37038

      Posted

      Had phone call from doctor no more test for Cushing only had blood and rule out Cushing. I feel so depleted I sat and cried, I cried talking to doctor then they put you down as a headcase which makes me angry.. so will go it alone and go private.
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