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Possibly Cushing?....

Posted , 5 users are following.

lissy7878
lissy7878

Hello,

38 yr old female in U.S. I've been sick for many years over 8 to be honest. I was a very fatigued super skinny 90 lbs for most of my life until I started gaining weight out of nowhere. I literally have no appetite maybe 1 cup of food a day, and a belly like I'm 6 months pregnant. I now weigh 130 so I've magically gained 40 lbs in my abdomen and chest, neck with thin arms and legs! I was tested 2 years ago due to having a high plasma cortisol 38 range was 22...and high prolactin but they just repeated the plasma tests and did one 24 hr urine and it was normal so they never checked it again. I naturally have low blood pressure 90/60 but have been having spikes of 140/90 randomly, and I also have tachycardia all the time. I do not have purple or red stretch marks they are silver/white and on my thighs and chest but I do have little purple veins all over my flanks and thighs, looks like a buffalo hump forming, and a weird double chin on a skinny face. My body is definitely different I hardly recognize myself anymore. My stomach feels like its pushing on my lungs so I get wore out with activity. My arms and leg muscles are weak and my fingers are swollen not in the joints though. Its so much to deal with. Im awaiting a new appointment with a GP to be retested and Im scared of knowing, but Im hopeful to finally know if I can ever get better. I've been sick so long I've almost accepted just being sick forever. A few other things are I have anxiety like attacks, hot flashes, major depression and very irritated at times.....also the memory issues are pretty embarrassing (example) I went to a store and forgot how to count my money to make a purchase and handed the cashier all of my money to count it for me!!!! I laughed at the time but it really worried me...Thanks for reading. I sure hope this mystery is solved soon.

Lissy

0 likes, 14 replies

14 Replies

  • cycliccushings
    cycliccushings lissy7878

    Posted

    Hello lissy...some of the most usual symptoms of Cushings is a moonie face, buffalo hump, trunkal obesity. Many Cushings patients have different symptoms, different test results none of us fit a set stereotype except for those 3 issues I listed. I never had any stretch marks...I was cyclic...the first one ever diagnosed in 1989. Blood and urine would be sky high then would look fine ...took nine years to diagnose me..had 23 doctors..a frustrating mess. I had bad acne on my face, my chest and cysts even in my pubic hair. Even my eyes looked sick, extreme fatigue, I would get so sleepy I could sleep for 3 days. Then it would switch up and I'd not be able to sleep and was like the energizer bunny couldn't shut me off. I named myself for the personalities...jekyll and hyde...jekyll was up for two to 3 days ..then hyde would come...fatigue just extreme fatigue, quiet didn't want to talk even, then there was normal me. I went from 110 lbs to 276 lbs rapidly within 6 months or so, was eating baby food and throwing that up. I had anger outbursts, lost my temper easily the closer I got to diagnosis it was severe, I was severely depressed ..who wouldn't be...concentration is another issue..sometimes I'd be sharp as a tack and others unable to complete a sentence. So first let your GP do a endo workup on you for Cushings, blood tests, 24 and 48 hour urine tests...then see if those tests show any indication of Cushings....ACTH and Cortisol levels....if you don't feel satisfied with your GP go to a Endocrinologist who specializes in Cushings disease and request a workup. Hope this helps...if you have any other questions just ask...I'm sure there are more people who will respond also to your post.

    • lissy7878
      lissy7878 cycliccushings

      Posted

      Thank You for your reply, I see you had a very long journey too. I have had some pretty bad luck with GP's and was getting so frustrated with being blown off, the last 2 GP's I had were very rude insulting and I walked out balling my eyes out. My emotions are out of control my usual calm rational self is now very defensive and fragile so I try to prepare myself better for upcoming appointments. I did have the plasma acth when they did tests 2 years ago and it was a a.m acth (13) based on what I have read thats kinda low...so maybe I could have been diagnosed years ago if they did more than one test..

  • caroline31144
    caroline31144 lissy7878

    Posted

    Hi Lissy,

    Yes i agree with what Cycliccushings has said. I too didn't received the stretch marks on my stomach and thighs but i got everything else. I was too weak to walk by the time they took me in for the operation and thats only because i took myself off to the local A&E department! (With the help of my family) I had been poorly for 10 years so you can imagine how bad i looked and how i felt..

    all i will say is push and persist to be taken seriously, demand you be referred to an Endocrinologist. It really sounds to me that you could possibly have cushings. Dont give up!

    Good luck xx

    • lissy7878
      lissy7878 caroline31144

      Posted

      Thank you for your reply ! Just joining this site makes me feel better knowing others know what Im possibly dealing with. I printed some before and after photos to take to my new doctor and I hope she has more compassion.
    • caroline31144
      caroline31144 lissy7878

      Posted

      I know exactly how you feel. This site was a godsend to me when i first got diagnosed. Looking back at my first comments i can see just how desperate i was... its an awful thing to have and was such a dark time in my life. Just know that you are not alone and we will all answer any questions you have if we can. If you are diagnosed with Cushings you WILL get better. Good luck with your appointment xx
    • vicky61456
      vicky61456 caroline31144

      Posted

      I remember when you first posted!  How are you doing now.  OK I hope.  I never dreamt when I first started this page that there were so many people desperate for answers just as I was. Take care.
    • caroline31144
      caroline31144 vicky61456

      Posted

      Hi vicky61456!

      Yes im fine thank you! Its took a while il admit but yes everything is ok apart from the now Addisons diagnosis. I took a college course and im just waiting on a visit from Ofsted to register me as a childminder. I do have days of tiredness but i put it down to my 40 years! 😂 xx

    • lisa99975
      lisa99975 caroline31144

      Posted

      Hi I am chiming in on this discussion looking for some help and advice and just anything! I don't know if I have had any specific symptoms prior to the last month. I mean I have been overweight most my life always hard to lose weight. I am tired pain etc but I always relate to weight. I did have a weird episode about 3 years ago that I had swollen groin lymph nodes for no reason they showed swollen on ct scan and ultrasound my left foot was extremely swollen with putting edema. Every test I had was negative even a pet scan. I lost some weight about 2 years ago and have gained it back and I've gained it in my face more so and shoulders etc. now that I look I think I have the supraclavicular pads and a small hump I always say I look like a quarterback. Fast forward to December. I got bronchitis. I'm an RN so I went to employer health and they said it was and gave me a z pack. I had this congestion in left lung and cough wouldn't go away. Finally end dec I got a UTI and they said it's now pneumonia. I was put on prednisone and abx and breathing treatment. The UTI is resistant to a lot of abx so I had to take another which is weird cause I haven't been on abx in years and have had one UTI my life. I really wasn't getting better I tried multiple meds they extended the abx and prednisone I had 2 cxr they were ok. I had abd ct nothing I had chest ct showed small area mucous or inflammation. Then I developed sudden extreme high BP like 200s/100s. Heart rate 150s I had another ct for blood clot was normal and it showed that inflammation area was improved. But it did show a tiny adenoma on left adreNal. I have also had this dull ache on left side constantly some days worse than others. My face gets extreme redness cheeks over nose and sometimes chin. I also get blotchy on neck and notice blotchy on extremities. I have periods of uncontrollably shivering cold to the red face and hot only in face and sometimes sweat at night. My eyes get very dry. I have palpitations. I feel very shaky. My stomach is off I have recently lost my appetite. I developed the same UTI again and back on abx. And the first episode when the bp rose they put me back on prednisone so I've had two rounds the first one was extended I was on an inhaled steroid also. They tested me for carcinoid syndrome and phetocycroma both negative. Tested for lupus negative. So Saturday my dr called said worried about Cushing so I did a 24 hour urine for cortisol I just delivered this am. I feel like absolute crap. I sometimes feel so shaky and my eyes shake I don't know how I can function I also just internally feel not right at all. I am not myself and I am not sure if I am having periods of anxiety also since I am worried about what is wrong. Sometimes everything hurts and one minute it's one thing then another. I am trying to push through and move on but I feel so awful. I also have a headache. I feel jittery. Etc. just curious for others stories. I also feel like I am burning inside then sometimes I get this cool sensation all over. Very very strange. But if anyone can chime in and let me know their thoughts or if having this makes u feel this awful every day. Thanks.

    • vicky61456
      vicky61456 lisa99975

      Posted

      Hi Lisa,  Your post seems to have got lost somewhere.  Naybe confusing you with Lissy?  Anyway I am hoping that some of the others will reply to you as well. Have you had the results of your 24 hour urine test yet?  When you have it should be easier for your GP to order further tests or refer you to an Endocrinologist.  Cushings is such a rare diease and there are not many hard and fast symptoms it is no wonder that GP's get confused.  At least you are now on the way.  Some of your symptoms sounds like Cushing's but a lot of them I personally didn't have.  I hope you get more reples.  We are ususally always here to chat and help in anyway we can.  Chin up and let us know when you get the urine test results.

    • lisa99975
      lisa99975 vicky61456

      Posted

      Hi thanks. No I haven't gotten my results back yet. I guess it's a send out lab so I was told my next Tuesday. So we will see. My biggest issue lately is my blood pressure and this red face that I keep getting. They are switching my bp med today cause I had problems with the cardizem. So we will see yesterday I actually felt the most normal yet and today same but bp is very high so we will see. When you were sick did u feel like absolutely awful and just not yourself?

    • vicky61456
      vicky61456 lisa99975

      Posted

      Hi Yes I did feel awful but I think the worst thing was the not knowing.  My GP tested me for a lot of things but they came back normal.  The relief at knowing why I felt so lousy was good.  My worst thing was the sweating and more facial hair.  Also the weight.  I ended up with a 45 inch waist.  All back to normalish now but I still have to take a couple of tablets.  I have never had high blood pressure and didn't then.  Let us know, you are on the way!

    • lisa99975
      lisa99975 vicky61456

      Posted

      I agree.  Everything I have so far is normal but something is obviously wrong.  I have always been overweight so that is hard.  I don't have any extra hair.  But my hair on my head is awful hasn't grown in years, and is course but fine.  It is crazy.  Thanks for your replies.  I actually enjoy talking to others who have actually experienced. Thanks.

  • vicky61456
    vicky61456 lissy7878

    Posted

    Hi Lissy,  You are having a bad time.  The trouble is that there are no hard and fast symptoms for Cushings really.  At least you are going to see another GP who will hopefully help.  I was diagnosed mainly from watching Doc Martin on TV.  I had not told my Gp about my xecessive hairiness or the excessive sweating as I had thought these were personal problems.  Once I went back to the Gp he did another test and I was diagnosed with Cushings.  You will get better but it is a long road.  Once you see your new GP you will be on the right track and there is light at the end of the tunnel and it is not a train!  Keep in touch, we are always here to listen and chat but never to diagnose.  Good luck!
    • lissy7878
      lissy7878 vicky61456

      Posted

      Thanks Vicky. Pretty amazing a show led to your diagnosis.. Being ill for so many years I pray for signs or hints all the time, my doctors focused on possible autoimmune diseases and disregarded my weight gain without eating I never thought to look back and be retested until autoimmune was ruled out. Tomorrow I go to a teaching hospital( rheumatologist ) for the finger swelling and broken vessels and I will see if she can talk to the endocrinologist at the hospital there maybe Im closer to a answer than I know. 5 hour drive not looking forward to it but I have to do it all the local doctors don't deal with complex illnesses. So wish me luck😀

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