Last resort

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Posting here as a bit of a last resort. I’ll preface this with the fact that I know I caused this myself and am amazed at my own Capacity to ruin my body. About a year ago after massive depression I did a round of steroids for physical purposes. After about a month I stopped taking them I started to get this response like my body was in constant fight or flight. It was literally as if I had taken 1000mg of caffeine but was happening all day. I felt like my body was attacking itself. I figured I had just stopped the steroids and my hormones were correcting. After blood work everything came back normal. But I was sceptical because obviously cortisol tested once doesn’t mean a whole lot. I gave my body a year, tried natural remedies like adaptogens, vitman c, diet etc. But everything apart from the vit c makes it worse. I’m at a spot where my body is constantly tingling like I’m having a panick attack but 24/7. I have a constant sense of vertigo to the point where I feel like I’ll faint all day. I feel like I gave myself cushions syndrome or somehow messed up my HPA axis. What are next steps? I live in Canada and the health care system takes soooo long to get things going. Should I request seeing a specialist? I have a son and a baby on the way and I can’t imagine living like this. I can barely work and even days off are terrible. Please help

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  • Posted

    Kyle.. Did you cold turkey those steroids? Or did you gradually come off them?

    Did you go to a dr about any of this in the last year or so since you stopped the steroids. My advice is to get a primary dr and tell that dr everything you have done.

    I would have a endocrinologist look at you if you have high blood results that indicate a hormonal problem..not just cortisol is a Cushings disease or syndrome issue.

    Do you have a buffalo hump a moonie face or massive weight gain in a short period of time? Why do you suspect Cushing's disease is your issue?

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    • Posted

      Thank you for answering Kyle.  It is hard for me when I live in the UK as I know things are different in the USA and Canada.  I am hoping that someone may reply with an address of an Endo in Canada.Thanks.
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    • Posted

      Vicky I agree that UK and USA test differently for Cushings and it's hard to understand those results from the opposite location.

      But we all know how hard it is to find endocrinologist

      that we can trust who listens to the whole picture without judgemental responses that are inappropriate. I have some really bad endo drs..you just have to keep trying. The Cushings Support and Research Foundation may have a dr they list in Canada im not sure but if you type in that name im sure you will be able to access their website and able to check where and who. It saddens me that after all I did in 1989 to show the drs that none of us fit the mold they are still insisting that you have to fit the Merck manual to have Cushings so that's really crazy as thats not true.

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  • Posted

    Hi Kyle.  So sorry that you are in such a state.  It is possible to get Cushings from taking steroids.  I live in the UK but there are people on the forum who live in the USA so they would be better placed to help you re medical care etc.  It can take many years to get a firm diagnosis of Cushings.  It is a very rare disease and many GP's will never see a case.  Also none of us have the same symptoms.  We may have some but not others.  The things to look out for and note down to tell your Practitioner:-

    A hump on the back of your neck

    Incresed weight gain especially round the waist

    Red or purple stretch marks anywhere on your body

    A moon shaped face

    Excessive hairiness

    Excessive sweating

    Pains in joints and muscles

    Sometimes headaches

    I am sure that some of the others on the Forum will reply with their advice and experience.  We all tend to be on the Forum at different times so be patient with us especially over this festive period.  The person you really need to see is an Endocrinologist, they are really the only people who will have had any experience of Cushings.  I have been trying to make a list of Practitioners but I do not think we have a name for an Endo in Canada.  I will do some research.  I am sure that Cyclic Cushings and the other people from USA will respond.  Please do not give up, it is a long road but in the end you will get a diagnosis one way or the other and then depending on treatment you WILL start to feel better.  Explain to your employers once you get some idea of what is wrong.  Please feel free to message whenever you feel down.  Support from the family is wonderful but unless you have actually had diagnosis of Cushings it is nice to be able to talk to people who have been there.  Take care and keep in touch please.

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  • Posted

    Kyle further to my last post I have found a recommended Endocrinologist in Canada.  You may be miles away but in case it is any good:-

    Dr Andre Lacroix,

    Central Hospital,

    University of Montreal,

    Canada.

    (514) 890 8000 ex 26620

    Hope this might help.  Keep in touch

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  • Posted

    Hi Kyle

    Seeing an endocrinologist would be the next step

    They probably know about the effects of steroids.

    You may want to consider a dhea supplement

    Whether it will help , I'm not sure

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