A Golden Oldie
What can I say in this bio?
Well, I started to get sicker and gained a lot of weight of age 7 years old. in the mean while, this concerned my parents.Another issues started to occure which happen to be I got sick one night and went to the hospital, and they dianoised me with diabetes.
From the time I was 10 years old through my teenage years. My parents tried to get me on a eating right plan, but they realized I still could not loose the weight, and I still was sick. My parents decided to dump the endro I had, and find a doctor. This doctor happen to be one of the best doctors because he told my parents she looks like she has cushings.
Well, I had to leave my doctor that I love because I turned 18. He was not a adult doctor. My parents had to find me another, and they did. But the doctor i seen for a short period time died of a heart attack. Than we ended up with the doctor I have now, and he dianoised me with thyroide issues. He even said this is whats giving me the symptoms.
4 years have gone by and nothing has changed. I found out I was not converting to T3, and my thyroide has gotten a lot worse. My thyroide is 4 times larger and it is gaining a lot of water. My parents see I am not getting better, and my doctor is dragging his feet. We are going to see another doctor for a diffferent opinion.
My parents are thinking that I could have thyroide issue that the doctor is passing up that is causing cushings like symptoms, or this could be cushings in itself. We are still testing and fighting to get answers.
We are excited about getting a second opinion, and my PCP was delighted to give me a referral to see a doctor outside my county. Not to mention, my PCP is getting concerned.
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Nov 01, 2013 @ 23:47:50
Hey Kimberly, Your story is my daughter’s story. I think something started going wrong with her before kindergarten. Took years before we could get her thyroid diagnosis. So many wrong diagnosis before that…not to mention the numerous times we just felt like the doctors just did not care what I was trying tell them. They just get focused on the “symptom of the day” and totally miss everything else going on. Still feel like we can’t get someone to connect the dots. Posting my intro below, which explains my daughter’s past and current situation. Good luck to you and your parents!
“I am a mother of a 20-year-old daughter with suspected Cushing’s. She was diagnosed with Hashimoto’s disease (with goiter) almost 4 years ago. Synthroid no help. Armour keeps TSH levels in range, but symptoms of fatigue, increased weight, etc, etc continue. Noticed hump at certer top back, at base of her neck, some years ago, but had no idea about Cushing’s. Four months ago noticed that it was getting quite larger. Started research of this development, which of course, brought me to Cushing’s. So many other symptoms line-up with Cushing, including larger midsection/skinner legs, moon face, purple stretch marks on stomach, rapid, unexplained weight gain, extreme mood swings, extreme anxiety, etc. Great-grandmother, same body shape, died of diabetes. Grandmother, same body shape, recently diagnosed with diabetes. Father, same body shape.
When first diagnosed with Hashimoto’s disease, first endocronologist experience was so very, very disappointing. Prescribed synthroid, which did not work, then decided we should do a thyroidectomy. No signs of cancer. Doctor’s husband just happened to preform thyroidectomys. We did not have this procedure. Found a general practicioner doctor who prescribed armour, which seemed to help somewhat, at least better than synthroid. With development of the hump and worry about Cushings, we have found a new endocronologist. In the last few weeks he has ordered the following tests:
1st test: Overnight Dexamethasone. Results: Cortisol (normal scale of 4.0 to 22 mcg/dl); her levels were at 5.4 mcg. So she was only slightly abnormal. Could not rule out Cushings.
2nd test: 24-hour Urine-Free Cortisol Test. Cortisol (normal scale of 4.0 to 50); her levels were at 42.1 mcg. Creatinine were slightly elevated at 2.60 g/24h (normal scale of .63 to 2.50).
Based on the results of the follow-up 24-hour urine test, endo states she does not have Cushing’s. Reading online, I found information that if urine creatinine levels are abnormal, which hers were, this invalidates the 24-hour urine test. The test should be repeated, right?
What do I do? Trust this endo? Or do I ask him to order more tests? If so, what test? Should I look for another endo (running out of these in western NC)?
She just has all these physical and emotional markers that hint at something more than Hashimotos. I certainly do not want her to have Cushings, but, if there is a chance she has this disease, then I want to know now, so we can address it as soon as possible.
Any help on interpreting these tests from people who understand this disease better than me would be so appreciated.”
Deidre