It just adds up..

Posted , 4 users are following.

So apparently when i was 19 a routine blood test said i had hypothyroidism...then they said i had Hashimotos diease...then after two years of thyroid med. a different doctor said i didnt have thyroid problems. I am now 25 and looking back all of this seems to fall in to place. I turned 21 and constantly felt like my stomach was itchy. Very rapidly my stomach just ballooned up with big stretch marks that were very deep red, the shape of my face changed (which can be decieving when your growing into an adult),  all the while my arms and legs have stayed slim. Looking back i can say my personality has changed, i used to be a competative swimmer, i can now sleep for 15 hours if im not working...i have thin skin, hair loss, and i bruise like a peach. Im not sure if i had always had anxiety because it seems like a lifestyle now.. but what brought me upon the possible diagnosis of Cushings was when i googled the words "thin arms and legs, pot belly, fat face" and then came across the buffalo hump. Mine may be small, but for the past four years i cant recall having much muscle control or movement in that area and the hump appeared along with the weird abnormal weight gain around the face... So im currently waiting on my endo. apt. to get here but i have attached some photos to get some input. Obviously the photo of the red stretchmarks are when it began when i was 21ish  and the other photos are from this month im now 24..about to be 25. Id appreciate any input i can get. Im just extremely tired of explaining symtoms when they seem so common sad 

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  • Posted

    Hi,  Firstly I think you are incredibly brave!  You look a lot like I did in the tears that I was waiting for my Cushings diagnosis.  The trouble is  and I am sure Debs will correct me if I am wrong but very few GP's will ever see a Cushings patient.  You are lucky if your GP has even heard of it.  i think it is about 8 in a million people who are diagnosed with Cushings.  It is always an incredibly long and horrid journey to get a diagnosis but you are at least on your way.  The Oituitary Gland which controls the hormones in your body and sometimes has the nenign tumour that causes Cushings affects the thyroid a lot.  I am still on Thyroid tablets after my op.  I do hope that you get your appointment soon and hope that others will reply to you.  We are very special people although I suspect that we would rather not be "Cushy's"!!  Thank you for contacting us and please let us know how you get on or if you just want to rant go ahead!
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    • Posted

      Blah, yeah. The last time i saw the doctor they did an ultrasound on my thyroid because my neck seemed swollen, im assuming because of possible moon face maybe? The doctor seemed confused about the weight on my stomach compared to the rest of my body and im sure if it is cushings the rarity of it/ signs and syptoms can just slide by. Thank you for responding to my post, i really appreciate it. I am territbly frustrated and tired. Please keep reaching out like you have, its incredibly comforting to know someone is listening! 
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  • Posted

    I found it very interesting that you said " Im just extremely tired of explaining symtoms when they seem so common ", Yet if you speak to most doctors they will tell you Its so rare you cant possibly have Cushing's. I hope as you head into the world of possible Cushing, you keep you sanity smile

    The best advice i can give you is to write everything down, have a list of questions for your endo, be prepared to have month after month of Test apon test ( I had 5 months of Urine, saliva, blood, dexamethazone tests over and over again, followed by an MRI, IPSS test before i even found out the doctor was suspecting cushings. when ever i asked what was going on, she just kept saying do another lot of tests, i dont want to diagnose till im sure ).

    Cushings is not something i would want to wish on anyone, but if you are going to be diagnosed with it, i just hope you are a straight forward case and you get treatment fast. To be honest, i dont know anyone who has been a straight forward case. I was certainly atypical even if i did have the abdominal weight gain, stretch marks ( striae ), buffalo hump, easy bruising. My biggest problems were my Mega high ( stroke level ) blood pressure and major swinging blood sugar levels despite no change in diet. So many times my medication was increased with no one taking the time to try and work out WHY!!! I am sure I have been living for about 30 years with undiagnosed Cushings. Hind sight is a wonderful thing. But as i look back over my life, yep i was about 17 when things started going pear shaped. Mind you cushings was a lot rarer 30 years ago. So almost 2 years ago now i had my pituitary gland removed as my whole gland was full of excess over large ACTH cells. They only left behind 5%and yes my cortisol levels have dropped from 1262 to 960 with a normal range of 118-619. So its still high. That seems to be the norm for me. I hit absolute rock bottom about 1 year ago. I'm talking serious Anxiety and depression. I was ready to take permanent action for a temporary problem. After much chatting with a clinical psychologist one day i just woke up and i thought to myself.... Nope Im not going to let this ruin my life. And ever since Ive been doing so much better. Yes my cortisol is still high and probably will be forever. We have managed to get my blood sugars stable with the introduction of insulin, and my blood pressure is still high, but not mega high. I found it important to talk things out. If you cant find someone who knows what your going thru, then come and have a chat to us here. Dont bottle things up, it just makes things worse. Be prepared for lots of testing and if they tell you its definitely not cushings after one round of tests, get them to retest ( there is such a thing as Cyclically cushings). It may not be cushings, there is always that chance, but biochemistry doesnt lie, so if you have elevated cortisol levels...then you will know. Your picture of your striae and buffalo hump do look pretty typical. It is possible to get the striae if you have a very sudden growth spurt and you body isnt ready for that spurt, so you end up with striae. Anyway, if you have any further questions let us know. I wish you the very best and i hope like hell that you dont have the trouble i had with doctors ! ( I finally found a good Endo now though, so Ill be sticking with him smile ). I hope thats helpful. Deb

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    • Posted

      Thank you for your words! Im looking forward to maybe getting this figured out. Having done some research on this condition i want you to know that you and vicky 61456 are real troopers and i really appreciate both of you reaching out. Its really special to see a group of people sharing a support system. I had approached other medical/forum websites before that were either outdated or didnt take me seriously and i just want to say please keep doing what you are doing! It is really special...i honestly felt like no one was listening to me *even in person!*

      I will make sure to keep you updated! Im pretty sure my apt. is this upcoming week.

      Many thanks

      -Francine  

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  • Posted

    Hi Francine, I completely agree with Vicky and Debs. Doctors don't expect to see Cushing's,and many will never see patients with it. They try all sorts of tests, diagnose virus, early onset menopause,and depression. From the real start of my symptoms,I was told numerous different things, and it took 5 years to diagnose. In hindsight, I also probably showed some symptoms earlier. Once Cortisol was mentioned, and an endocrinologist referral, all the proper tests started. I was fortunate in being referred to an Endo who had previously worked with Cushing's patients elsewhere, so when I walked through her door, she could see what was wrong. I had just about all the listed Cushing's symptoms, except high blood pressure. I was 33 when diagnosed. I also come on these forums because I hate to think of anyone going through this, and if I can help in any way, I will. My surgery was 18 years ago, 16th December. We had no computer then, and very little information. Even now, there are family members who don't or won't understand what I go or went through. It's a case of shake it off with work or exercise with them. Afraid that doesn't work with Cushing's.My Cortisol is now just above zero, so I take a number of replacements. Good luck to you, and do keep in touch.Gill
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