Personal experience with Cushing’s Disease (hyp... - Thyroid UK

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Personal experience with Cushing’s Disease (hyperCortisolism) and with hypothroidism and hypothyroidism.

Hanne1977 profile image

This was actually a response I wrote to a user that asked how hyperthyroidism is in tandem with hyperCortisolism. It’s long, I hope readers realize I am not an expert in what I have written, but I have lived it! Some of the way this response is worded may sound out of context, I copied it from my original post. I hope the individual who initially asked a question is able to read this. Also, I would love to know if anyone out there knows of a support group online for Cushing’s disease.

I have Cushing’s disease, a pituitary Adema. I had brain surgery twice in 2015 to remove the tumor and the gland on my right side. There were several awful side effects I had for year and a half. I became diabetic, hypothyroid, producing too much ATCH. The pituitary is the master gland, and controls the thyroid the adrenal gland‘s and sex organs. So essentially most of the glands mentioned are affected by anything involved in the pituitary. This condition is more commonly called hyper cortisolism. High cortisol levels can cause hypothyroidism and hyper thyroidism. I found out in March that I have another tumor and what’s left of my gland. I chose to take an experimental medication instead of having surgery or radiation. The medication is called Korlym and costs 20,000 a month! Fortunately, they were free through national organization of rare diseases the medication is free. In My case, my last blood test for my TSH was 7.140! The normal range I think is between 2.000 or ye my case, my last blood test for my TSH was 7.140! The normal range I think is between 2.000 And 4.00. Meaning I now have hyper thyroidism. Basically, it means you are producing too much of a Specific hormone (something that starts with thx). The Hyperthyroidism causes too much of they T3 and T4.

My endocrinologist says this is due to the Korlym. This medication is a progesterone blocker. Progesterone turns to cortisol in the body, Which then turns to Cortisol. The Korlym Prevents excess cortisol reaching the pituitary gland.

I do have some valuable advice for you. If your endocrinologist is testing your cortisol levels and it’s just a 24 hour urine collection, when I had full-blown Cushing’s disease, it would not show up in the 24 hour urine. There are blood tests to see if your levels are high. My results were always normal for the blood test. It did show the Cortisol being high from A dexamethasone test and a cortisol saliva test. I also had something called IPSS done which was not easy but it showed definitively that there was a tumor.I do have some valuable advice for you. If your endocrinologist is testing your cortisol levels and it’s just a 24 hour urine And blood tests show the Cortisol is normal, keep pressing the endocrinologist to do theDexamethasone tests and the Salivary cortisol test. It took me 15 years and five different endocrinologists to find out I had the Cushing’s disease or hyperCortisolism. So Your endocrinologist is probably Checking your pituitary cortisol levels to see if that is causing overproduction of your Thyroid.

I am a researcher And a graduate psychology and clinical counseling. Student. I have learned through my studies, About peer reviewed journals concerning any type of medical condition. Fortunately, I have access to every journal in the world for free. Anybody can write an article on Wikipedia or Google that does not have cited sources. For a journal article to be published as peer-reviewed is a very complex process. the research can take years and at least three or four years of revisions before it gets approved by a panel of doctors. You will find more information and journals, which you had mentioned you have Found. And if you’re not used to scientific or medical jargon it’s like reading another language. If you would like I can email you some of the articles that will not have a lot of the jargon. I research that may help you and can email you. Please keep in mind how complex the entire endocrine system is, it took me time to absorb all the information. My struggle has be 18 years in the making! Sometimes I get depressed and when I go there, I try to find a positive. Right now that is presenting information to individuals to help them to not feel alone and misunderstood. Learning aboutHypercortisolism and The thyroid disorders adrenal insufficiency and reproductive disorders has led me to the point I now know that I will be writing my dissertation on endocrine disorders and how they affect clinical mental health Illnesses.

what I have said is my based on my experience and the knowledge I have learned. I am not an endocrinologist, so I don’t know everything I hope other read a verse don’t believe that I’m saying Pure medical fact

I wish you much luck and hope you find solutions. Just remember keep fighting.

6 Replies

Good on you...a lot of members, including myself, need all sorts of support from 'interpretation' of academic papers to being made aware others have gone thru similar problems as you etc. Too many doctors insist on treating the disease and don't bother with talking ( and listening) to their patients. I have evidence of high cortisol results well over the range from 12 plus years ago when trying to work out what was wrong with my hypothyroidism... but nothing else was looked at, or treated..... we don't have any endocrinologists in my University Hospital Trust...I think it is a case of wait and it ( or patient) might go away. Good luck with your treatment Hanne.

I’m so sorry to hear that! I am very blessed that I have the Endo I have! It took 15 years to finally obtain a dr who didn’t talk down to me, was very patient, listened and always runs on time with his appts! I hate to hear that are not able to be seen by an Endo 😰 however, I do have a suggestion. In a lot of cases of pituitary, thyroid and adrenal issues are found by OB/GYN. I was diagnosed with PCOS, find my OB/GYN. Once I had this diagnosis I was able to be covered by insurance to see an endocrinologist. If you would like me to look up some journal articles and email them to you I can. The biggest lesson I have learned from my experience is to never stop fighting if you know something is wrong. I went through five endocrinologists 2 OB/GYN’s, and at least 8 general practitioners over a 15 year time span and finally got the answers I needed. You know your body Better than anyone else! if you cannot find a Doctor who will be an advocate for you then you need to go elsewhere. Don’t ever let anyone tell you you’re wrong and fight until you have the answers! I wish you much luck!

Thanks...I seemed to get one disease/ ailment after another it's only in the last year or so have I discovered there may be common features, so currently happier DIYing, and hope time of tweaking around thyroid doses will improve things. X

How are you treating the Cushings? Iwish I could email you.

Hanne1977 profile image
Hanne1977 in reply to Oberley

I have soooo much information on Cushing’s Disease and almost 2 decades of living with it! I would be happy to send you journals if you would like. Feel free to email me as well

Hi Hanne, I do hope your health improves. It was an interesting post & I'm sure will be if interest. You say the 24 hour urinary Cortisol test wasn't reflective of your elevated Cortisol. I'm puzzled why that is ? Surely, if

there is an overproduction of Cortisol in your system, the excess would show up in urine ? My best to you

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