Monday, June 5, 2017

Finding a Doctor Who Will Help You

A woman recently competed that she has had a rough time finding a doctor who could help her feel better with her Addison's Disease.

Some doctors brush you off as just another person who can't handle life and needs tranquilizers. This happened to me and I wouldn't take them. I knew that something was wrong. We know our bodies best. A health journal where we write down all our observation and share them with our doctor can be a great help. It took me many years to find a doctor who would listen to me and work with me to help me feel better. Don't give up. Keep trying doctors until you find the right person for you. They are out there!

3 comments:

  1. Honestly, finding a doctor that can actually help me, or even take my condition as seriously as I do, has been the most difficult and stressing part of my battle. My initial diagnosis took over two years, and having my cortisol/adrenal levels tested was a lucky guess that I made based on my own research of my symptoms. I was first misdiagnosed with hyperthyroidism, due to my Addison's causing elevated thyroid levels, and the dozens of adrenal crisis modes that sent me to the emergency room were originally thought to be thyroid storms. This led my doctors to a decision to have me undergo a complete thyroidectomy. Which made my symptoms drastically worse. At one point, the abdominal cramps and spasms were so severe, and had gone on for so long, that I was doubled over in excruciating pain with tears running down my face. After six hours in the ER, I left with nothing but a doctor asking me if I had ever had severe gas before. Even after my diagnosis, I went into the ER during an adrenal crisis, barely able to stand under my own weight, with tunnel vision and slurred speed. My wife fought with the doctors for several hours to explain my condition and get them to give me an injection of cortisol. After I received the correct treatment, the doctors were amazed at how my condition corrected and admitted that they were not familiar with an Addison's patient and the corresponding treatment. They apologized for not treating me properly sooner, but they thought I was just heavily intoxicated or high. My road has been very long and very difficult, and I am still looking for a doctor that can truly help me. My last endocrinologist took me off of my cortisol medication, because he believed my diagnosis to be incorrect. Yet after putting me through two months of blood tests feeling like complete hell, he simply said, "well I guess you did have Addison's after all. We need to get you on replacement cortisol as soon as possible." But I haven't given up. I'm still fighting every day, and I keep looking forward to a day when the maybe the battle isn't so hard. I just try to remember that there are doctors out there that can help, i just need to keep looking until I find one that can help improve my quality of life.

    ReplyDelete
    Replies
    1. You are fortunate that you were finally diagnosed with Addison's disease. Hope you are feeling better now that you know what you are dealing with. Study all you can about the disease and monitor your treatment. You can improve.

      Delete
  2. I am in the process of getting Dx with Addison's. I have had two tests for cortisol levels that have come back low. I am supposed to go for the acth stim test in the next week or two (I have to wait for them to call me to schedule at the outpatient facility).

    What really has me frustrated is trying to understand how having a LOW cortisol level can contribute to weight GAIN?! I have gained over 125+ lbs in the last year or so and I have been saying "something is wrong" almost the entire time.

    Finally, my TSH raised high enough to give me a clue and I asked my doctor to see an Endochrinologist and he tested me for the MTHFR marker? Which I do have (joy!) NOT! And HLA-B27 which I tested positive for.

    So now, I am trying to figure out how I can HAVE Addison's yet have weight GAIN?

    Any ideas?

    ReplyDelete