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The Beginning : From First Symptom to Diagnosis

Mar 12, 2014 - 2 comments

Cushings Disease






Cushings Syndrom


Pituitary Adenoma


pituitary tumor


pituitary surgery



I have had extremely out of wack blood pressure 234/125 ( around there ), Blood sugar levels that swing from on the low side, to so high my monitor just reads high. This has been going on for two years. My GP just kept changing meds, upping doses but nothing worked. I even had a Lupus type reaction to one of the Meds. So with nothing working i asked for a referal to see an endocrinologist to see if we could sort these issues out.

After a full medical assessment, ? cushings syndrome, my endo sent me off to have a full range of tests. Blood/ urine. midnight saliva test, dexamethazone suppression test,  another 24hr Urine and a longer 2 day suppression test. Still high. Then off for a full body below neck CT scan and a MRI of head, all normal, except the MRI did say i had a " Bulky " Pituitary gland ...

I dont even know what that could mean lol

They said i have the pituitary gland of a 16 yr old ( i thought that was good, but apparently not ) lol

I have just turned 50 !.

3 weeks ago i had an IPSS test ( inferior, petrosal sinus sample ), Results as follows :
Normal values cortisol ( 64-618), prolactin ( 102-496), ACTH (7.2- 63)
My results 10 mins post CRH
peripheral : cortisol 969 H, prolactin 263, ACTH 76
Rt petrosal sinus cortisol 985 H, prolactin 289, ACTH 88
Lft petrosal sinus cortisol 1018 H, Prolactin 618 H, ACTH 680 H

After this final test the hospital called me and i spoke to a neurosurgeon who suggested transsphenoidal surgery. He said i am a difficult case though as they dont know exactly where the tumor is as it didnt show up on the MRI. But the pathology definately suggests a microadenoma on the left side of my pituitary gland.
My surgery is in 8 days.I have a pre appointment with the surgeon in 4 days.

Oh and other symptoms ive had.... ive actually lost weight on the scales, but my stomach looks like im 8 months pregnant, but my poor little legs seem like they have atrophied. I get very weak very fast/ fatigued/ spend many hours sleeping ( but broken sleep). Nausea like you wouldnt believe but im sure thats my swinging sugars, Blurred vision, again im sure is sugar related, I have a foggy brain, cant think fast on my feet like i used to. And im irritable !!!!!!!! +++++++ cry at the drop of a hat, oh and decreased pain threshold ( used to be high ).

I sound like a mess lol. Im just hoping that surgery can find what they are looking for and i can get better :)

Last week i got a phone call from my Endocrinologist who told me that my IPSS results were " Atypical ". She wants to run all the Urine, Blood, saliva and Dexa suppression tests again pre surgery. Completed the 24hr Urine this morning. Doing the Midnight saliva tonight, then i take the dexamethazone, go to bed :). Tomorrow morning ( early, 8am) im off to have the post dexa blood test.

Thats where im up to for now.

Next step....speak to the surgeons, then surgery, then i guess we wait n see :)
So begins my road to recovery :)

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Avatar universal
by Jade2698, May 10, 2014
I'm so sorry to hear how you're suffering. I hope your journey into recovery is an easy and FAST one.

Avatar universal
by Jade2698, May 10, 2014
BTW, I am ALSO a 51 year old woman who just several months ago started per menopause. The reason I stumbled upon your post is that I started to read up on the pituitary gland. Again, I hope everything works out for you. Best of luck.

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