Looking for a bit of advice.

Posted , 3 users are following.

Hello, everyone! I've slowly been accumulating strange symptoms over the past five years that have lead me to believe that I might need medical treatment for Cushing's, but I thought it would be a better Idea that I come here and talk to patients with Cushing's before I haul off and spend money I don't have on specialists and things like that.

In 2013, I had thick hair, smooth skin, and had never needed to watch my weight. Sometimes I could eat cake for meals even, and I'd still be the perfect weight for my height, much to the envy of friends and family. One day my grandmother teased me that she could pinch an inch, and my now ex-husband was commenting that every night I felt bigger and bigger to him. It wasn't long before I was looking at a stomach pooch in the mirror, with both disdain and confusion.

In 2014 I gave birth to my firstborn child, a boy. Extremely reluctant to experience pregnancy again any time soon, I had a nexplanon implanted into my upper arm. My son was born almost a month early, and after he was born I went from a trim and athletic 130 to a bulking and constantly exhausted 190. My favorite foods were fruit and chicken, and I was very active, I even got into Insanity, but I kept gaining and gaining. My ex-husband became ridiculously abusive. I left and moved back to my parents with my little boy in tow. I started several psychiatric medications to try and move on with my life and my newly diagnosed bipolar disorder.

I got up to 250 lbs before I noticed dark hair follicles all over my throat that would come and go, a couple of coarse hairs growing from my chin, and what I thought at the time was a Dowager's hump/kyphosis. I was always way too hot and sweaty, and couldn't get out of bed some days. Even though I had no stretchmarks during my pregnancy, I was suddenly riddled with red streaks all over my midsection. My self-esteem plummeted. 

I was single indefinitely at this point, so I had my nexplanon removed. Shortly after having my birth control method revoked, I met my husband. Being a bigger guy who had been with much bigger women than me, he didn't mind my size. He was more than happy to try for love with me. We fell, and we fell hard. 

It wasn't long before we were in a house with my son- and pregnant with our daughter.

The pregnancy brought literally every complication you can imagine; gestational diabetes, pelvic dysplasia, sciatica, my hormone levels were so out of whack I had to have hormone therapy so I didn't go into early labor, my progesterone levels were so weird my bones wouldn't move to make space for my daughter to exit. Nothing was loosening, one night a round ligament flipped and the pain was so severe that I couldn't move or breathe and was taken via ambulance for what the paramedics thought was a burst appendix. I had to have a second doctor to monitor our daughter's growth, as well as physical therapy and a special diet for my gestational diabetes.

In that time, I actually lost so much weight I got down to 190 lbs! I was so happy postpartum to have my shapely legs, large breasts, and trim-for-a-mother-of-two waistline. But then I started breastfeeding, and things took a turn for the worst again.

I could never produce more than three ounces of breastmilk (from both breasts combined), and even that was a feat. I was nursing for hours at a time to try and keep my little girl satisfied. Breastfeeding, however, triggered another hormonal explosion, and I suffered hypermenorrhea and chest/knuckle/toe hair for the first two months of her life. It started getting so bad that I was thirsty all day and faint on a regular basis. I went to my doctor in tears, feeling like a failure. He told me that some women just can't produce enough, and to please stop trying to breastfeed before I hurt myself, that I gave her the best possible start at life and a good immunity. He also sent me to ultrasound to rule out any retained placenta. I tried to not feel like less than a woman and went to WIC to start formula feeding. (She didn't notice or mind, and it was nice to have a break from sitting with a baby in my lap for hours on end). It's at this point that my mother informs me that I was born with a very slight intersex condition called vaginal agenesis, which means that I was born with just a urethra and underdeveloped internal secondary sex organs. THAT WOULD HAVE BEEN NICE TO KNOW A FEW YEARS AGO, THANKS MOM.

As soon as I stopped breastfeeding I shot back up to 210 lbs, and have a period either twice a month or every two months and no inbetween. I noticed a lump in my breast, and that my tonsils kept swelling up, so I made an appointment with an obgyn to rule out any cancer because at this point I'm just about ripping out whatever hair I have left that isn't falling out in clumps in the shower. She can't find the lump. It's gone. She asks me a few questions, tells me that it sounds like I have hypothyroidism, and orders some bloodwork. It comes back that it appears I have very EXTREME hyperthyroidism, even though my symptoms point me in the other direction. She had me repeat the test and here I am with my TSH under .006. 

I'm at my wit's end.

Should I be evaluated for possible Cushing's? This is my last hope and I'm at a dead end.

0 likes, 3 replies

3 Replies

  • Posted

    well it depends what your t3 and t4 levels are in

    relation to your tsh

    then you can look at possible underlying conditions

    for cancer you want to test your blood platelets

    for hormonal problems you want to check your pituitary

  • Posted

    First of all hi and welcome.  You have certainly had a rough time.  I can only answer for my own Cushings journey.  First thing I would say is ask to be referred to an Endocrinologist.  Whilst G.P.'s are quite able to deal with ordinary disease when it comes to Cushings they have probably never seen a Cushing's patient and we are all so different.  Also when you go to see someone take someone with you and write down a list of ALL your symptoms.  When you are in a consultation there is so much to take in and remember you need both of these to help.  Your symptoms certainly sound like Cushings.  My diagnosis was delayed by the fact that I did not tell my G.P. all my symptoms.  It was only when I was watching Doc Martin on the TV that I realised that excessive black hair growth on your face and body and excessive sweating are both classic symptoms of Cushing's!  Once I told my Gp things moved quickly towards lots of tests and was finally diagnosed after about 2 1/2 years.  There are lots of tests to go through so be prepared.  The other things you mention are probably not related to Cushing's.  I have had breast cancer and also benign cysts but that was an entirely separate thing.  Having been diagnosed as bi polar must complicate things too.  Poor you.  It is important that you have all the support and help you can get as it is a long haul.  We are always here to listen and advise and will always tell you the truth about the tests etc.  Do you live in the UK or the USA.  Sometimes the tests differ but we have people from both sides of the Atlantic.  The Buffalo hump and the red stretch marks are also indications of Cushing's but you need to see an Endocrinologist.  Please let us know how you get on.  Good Luck and remember you know your body better than any G.P.

  • Posted

    I'm sorry for what you've gone through with your


    this condition can be difficult and I still

    can't get anyone to believe me.

    the hair thing is called hirsituism

    and it can be because of Cushing's

    hopefully the doctors can first check your cortisol

    and go from there

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