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Showing content with the highest reputation on 05/12/2020 in all areas

  1. 1 point
    Hello Mary!! Thank you for replying!! It was a surprise for me having a relapse... I never knew or even heard it could happen... but last year I began to feel sooooo bad... and as I’ve had so many difficulties with the doctors I consulted the first time (I visited 40 doctors in ten years ... and only 3 of them understood my symptoms)... I decided to go to the laboratory by myself and asked them to perform the tests I thought I might have needed. And so I saw the cortisol beginning to increase ... but this January I presented a tachyarrhytmia sincope and although cardiologists intended to get me through a lot of heart testing I KNEW it was high cortisol levels again which led to this condition. And that is how it was... my cortisol was twice the normal levels... and again I went to an endocrinologist and she told me ... you have Cushing again... you can imagine it’s been the worst déjà-vu in my life. The etiology of my Cushing’s Disease the first time was very uncommon, as I thankfully never had any ACTH or cortisol secreting tumor, but I presented very high levels of cortisol (over ten times normal levels) and of ACTH, beyond high levels of other pituitary hormones: prolactine , TSH, FSH, LH ( a condition known as PANHYPERPITUITARISM) besides insulin, estrogens and so on... except for somatotropin (growth hormone), almost all of my hormones were in very high levels... and I was almost dying. Ten years and forty doctors later my neurosurgeon discovered in my latest MRI that besides I had a pituitary lesion that didn’t light up in the scan, my pituitary stalk and my hypothalamus (as well as the pituitary gland -presenting empty sella) were completely compressed by a suprasellar arachnoides cyst (meninges cyst), so that the hypothalamus hormones that regulated the pituitary hormones to stop over producing were stuck and never reached the pituitary... so it (pituitary gland) was continually producing all kind of hormones (except GH) without stopping. Finally in 2009 I had a neurosurgery resecting the meninges cyst, hoping that reliefing the pituitary stalk could lead hypothalamus hormones to reach the pituitary and regulate it to a normal hormone release... and so it happened!!! A month after neurosurgery my pituitary hormones levels were totally normal as well as my cortisol... and little by little the rest of almost my other health issues released... it took me over five years to have my liver in optimal conditions (Normal oxaloacetic and pyruvic transaminases) and to leave my diabetes medication at all controlling it only with a strict diet. So the last five years I’ve just struggled with hypertension , hypoglucemia and hypotiroidism (Primary subclicinal)... until last year ... I couldn’t understand what was happening to me... I couldn’t move my muscles.. extreme fatigue and great muscle pain... so I had my doubts and was checking upon suspicious high cortisol levels. This time as well as the first time I suppress cortisol with the dexametasona test... which indicates I do not over produce cortisol because of a tumor... so the etiology is again different from what’s common. And now my latest doctor has told me that my over production of cortisol is due to my previous Cushing’s disease and panhyperpituitarism and not because any possible ACTH or cortisol tumor. I decided to investigate what could help me to stop over producing cortisol and so I found Dr. Burton’s work. After founding out his investigation was still in the dark... well I decided to help him making his work known through your Forum... but I also needed help and so I continued researching and I found Isturisa (osilodrostat - LCI-699) which had just been approved in the EU this January. And so I spoke to the Director of Recordati Rare Diseases in México City and he told me that with my diagnosis and prescription they could send me the medication. As the annual treatment is about 55K euros, they are now helping me through IMSS (Mexican Institute of Social Security) so that the Mexican Federal Government can provide me the medication at no cost for the time I need it... it’s an administrative process but we’re starting it and we expect to have good results. And by far this is how my story goes... I know it was a long reply... but I think it is important for all of us to know this uncommon etiology of the Disease... because it took me over ten years and plenty of pain and suffering to get to the point of what was causing my over production of ACTH, cortisol and almost the whole of hormones in my body... and as my neurosurgeon told me... this etiology of Cushing’s Disease doesn’t even appear in medicine books .... So I hope my medical case can help anybody that unfortunately could be in this position to find quick answers from their doctors... and maybe teach them something as I did. Thank you very much for reading this... my best wishes... stay safe ... blessings!! Regards from Querétaro México MAYELA
  2. 1 point
    Thank you so much, Mayela - I'll definitely check this out. We need all the help we can get and I'm glad that Dr. Burton is trying to help Cushing's patients. 13 years is a long time to withhold a potentially helpful drug. I'm so sorry you're having a relapse Are you planning another pituitary surgery, BLA or something else?
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