It just adds up..

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!

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

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 ). I hope thats helpful. Deb

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