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What were your UFC values?

Posted , 3 users are following.

gina32124
gina32124

I’m curious as to what everyone’s 24 hour urine free cortisols were during the diagnosis stage. Mine are mildly elevated, like 56 with top range being 45. Is this likely to not be cushing’s? 

I have no idea what is wrong with me but I’m getting worse by the week. Today I must have lost 800 strands of hair. I can’t touch my hair without clumps coming out. I’m so fatigued and weak and my sweating and sleep issues are worse than ever along with my mental health. I’m still waiting for my midnight saliva. My UFC’s go up and down. My lowest one was 32.5. I feel like my symptoms are at their worst but I finally lost weight after nothing budging for years. My face looks thin. I’m so confused by my symptoms. 

Anyone with fluctuating results and mildly elevated results go on to get diagnosed? Anyone with fluctuating weight? My body composition is still off even though I’m at a low weight. 

0 likes, 11 replies

11 Replies

  • courtnay26
    courtnay26 gina32124

    Posted

    It must be difficult to get diagnosed with Cushings when your skinny because I bet all the doctors would say, your too skinny

    There is a chance you actually have low cortisol

    It is called hypoadrenalism

    Then you have to test your AM Cortisol

    If it is low, they will test you for

    Either primary or secondary deficiency

    Either way I would get your plasma cortisol checked

    • gina32124
      gina32124 courtnay26

      Posted

      I’ve had my am cortisol taken a few times. Before birth control it was 21.2 and 21.0 with top range being 22. Then on birth control it shot up to 49 and 41. I know the estrogen makes it higher but it’s not supposed to affect the urine. I’ve has UFC’s that were 48.6 and 32.5 with top range being 50. And this recent one being 56 and the top range being 45 at that lab. 

      I’m freaked out this is an ectopic tumor and it’s cancer and that’s why I lost weight but the endo didn’t seem to think so. She mentioned pseudo cushings but I have so many symptoms and did for years. Only recently did this blow up out of control. I was struggling with losing weight up until March. I’m so scared, I haven’t felt myself in years. I just want this to be resolved. 

    • courtnay26
      courtnay26 gina32124

      Posted

      Hi Gina

      Im in a similar situation

      Some of my labs are confusing

      And even more confused , are my doctors.

      But I do know the endocrinologist I went to

      Was wrong and didn't seem to care

      About looking at pituitary issues

    • courtnay26
      courtnay26 gina32124

      Posted

      If you think it is cancer

      Get a cbc count

      If it is normal, it likely isn't cancer

      Cancer usually shows up under

      Wbc's and platelets or red blood cells

    • gina32124
      gina32124 courtnay26

      Posted

      I had my CBC done three times within the last month and a half. Even saw a hematologist because my red blood cells, hemoglobin and hematocrit were slightly high. But they came down and it was blamed on dehydration. I went to the Er last weekend and my red blood cells and whites were in range but I did have slightly raised immature granulocytes but everyone says it was fine. I noticed my neutrophils were on very high end and lymphocytes were low end which I read is a feature of cushings and immature granulocytes can also be caused by steroids. I have no idea what’s going on with me. My midnight salivary was so high I have all the mental symptoms, sweating, insomnia issues, muscle weakness, hair loss and growth but I lost weight. My symptoms started years ago but were mild and would come and go so I’d just ignore it and blamed fibromyalgia like my Dr suggested after years of me complaining but after getting sick with the flu in January of this year all my symptoms exploded and I’ve never been worse and i lost all this weight. Developed blood sugar issues and hypertension and hair is falling out if my head. I’m so skinny. My legs are so tiny. I’m so confused. But my stomach is still flabby. 
    • courtnay26
      courtnay26 gina32124

      Posted

      Hi Gina

      From your symptoms , I

      Definitely agree with you it sounds

      Like Cushings

      Cushings can cause skinny arms and legs

      With a poochy belly

      Sometimes you can get an MRI

      At a private clinic

      And then go back to your doctors

      With the results

      You might ask for a

      Pituitary MRI

  • cycliccushings
    cycliccushings gina32124

    Posted

    Yes, you can have values that are high per time, normal the next time, or lower..with your urine tests and your blood tests. I'm the first person in the United States diagnosed with "cyclic" Cushings. The classic symptoms of Cushings are a "moonie" face, a buffalo hump on your back, and excessive weight gain. Do you have a buffalo hump? Cushings is a confusing illness, in my knowledge I have found that most Endocrinologists are arrogant and do not listen to their patient. It took them 9 years to diagnose me with the cyclic cushing's..they didn't believe in it in 1989. I would be sick on and off during those 9 years..until I had gained from 105 lbs to 276 lbs in 6 months..and the arrogant drs would still say..you just need to quit eating..yeah right u was eating 3 baby jars of vanilla pudding and throwing it up...23 drs..9 years..insane.

    So yes don't get discouraged you know something is wrong..keep at it til you get your answers and get well.

    • gina32124
      gina32124 cycliccushings

      Posted

      When I was my high weight I had noticed a hump on my back and it hurt. I thought it was from hunching at a desk all day but then started to suspect cushings due to my mood issues and body composition changes and after staring at every other girl on the subway to see if they had this hump. My face was puffy and round looking from around 2015-recent months. I don’t understand how I lost weight so fast since April, but my body still looks not like it used to at my normal weight now. I have a fat belly still which was what was unusual for me when I started gaining years ago, I used to be very thin with a flat stomach. I have almost every symptom though still, thin skin that wrinkles like I’m 70 but I’m only 30, major hair loss, suddenly all the vellus hairs on my body and face got super long. I’m hairier. I bruise easily. Cuts heal slowly, recently started getting infections. Just had cellulitis on my ear that is still healing after ten days of two types of antibiotics. Insomnia, waking up every couple hours and vivid dreams. I wake up in a panic and night sweat. My emotions are a mess. I’m depressed, highly anxious, paranoid, had irritability and rage. I blamed misophonia for years. I have suddenly developed insulin resistance, prediabetes, hypertension, and high cholesterol. I have had zero sex drive since 2015. Bad muscle pain and weakness. Inability to build muscle too. I haven’t felt like myself in years. I originally thought I was going through some sort of early perimenopause because I was hot flashing too with mood swings, this was when I was about 27 years old! I also blamed myself for the fatigue and weight gain. I kept telling myself I was lazy and didn’t exercise enough and just thought it was depression. When I felt I was in a place in my life that I should have been happy (engaged, planning a family, etc) and I still felt wrong, I saw my gyno who found high prolactin and I thought that was my issue because I used to have a high sex drive and I was getting migraines almost every day. But the MRI was normal.

      The endo im seeing is supposed to be a top pituitary dr for cushings but I’m worried I ruined my meeting with her bc my anxiety was off the charts that day and I cried and didn’t get to express all my concerns and explain how I used to look, etc. she’s waiting for my saliva results, but mentioned either pseudo cushings or I have a pituitary tumor that was too small to see on my MRI. My ACTH was in range for the AM blood test. I know this is not pseudo cushings. She wants me to come off birth control for six weeks and retest the full pituitary blood panel, do another urine test, dexamethasone test, and saliva again. But isn’t going to see me again for three months. Ugh. 

      I hope she believes me. If my midnight saliva tests come back high, im going to ask her if I can do another 24 hour urine in the meantime since the birth control isn’t supposed to affect the results for free cortisol. I’m so tired of suffering and having no answers as I’m sure you more than anyone can understand. 9 years is sooo long!!! 

    • gina32124
      gina32124 cycliccushings

      Posted

      I just found out my midnight saliva was normal one night hutvtge next night was high at .25 but should be under .09.  What does this mean? I’m scared. I had no tumor show on an mri and I lost weight. I’m scared. 
    • cycliccushings
      cycliccushings gina32124

      Posted

      Gina..I understand your frustration and anxiety. Do you have pictures..showing the changes in your body..if you saw mine...you would see exactly how severe it was...gather all the pictures you have..showing the dramatic changes in your body...I didnt realize either that the arrogance of the dr would overshadow my desperate need for diagnosis...do you live in the U.S. or in another country? Put the pictures side by side showing those changes and print them out 8 x 8..show there is no doubt of the changes. Keep detailed diary of your symptoms daily..your thoughts ect..this will help you to keep a journal. All of the symptoms you listed are part of Cushing's..none of us are the same, nor do we have all of the same symptoms. If you need to talk extensively with me please connect with the private email then we can converse with more info for you.

    • cycliccushings
      cycliccushings

      Posted

      Oh I forgot..yes the tumor can be the size of the top of a straight pin...they couldnt see my tumor either, a radiologist saved my life..all he could see was the stalk of the pituitary was bent..suggesting a tumor.

      So not seeing it does make it harder...your Endo is doing what is needed done...24 and 48 hour urine tests..I should have a gold pea bottle...I even now am having to do saliva tests and 24 hour urine...so yes I'm a pro at this ..been dealing with it since 1981..I was 30..now I'm 66..almost 67..you are going to make it through this...

      Pam

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