Aa
Microadenoma not evident on MRI
Ive been doing a bit of reading here, and seems most people have had "A TUMOR" removed.
My story: 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 ). 3 weeks ago i had an IPSS test ( inferior, petrosal sinus sample ) which showed high cortisol peripheral, rt side , Normal prolactin and ever so slightly elevated ACTH. On the left petrosal sinus my cortisol was 5 times normal, my prolactin was 3 times normal and my ACTH was 20 times normal. 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.
I guess my question is, Has anyone had surgery where they didnt know what they were going to find before they went in? There is the posibility i am going to have my whole left side of my pituitary gland removed, not just a tumor. What could be the possible consequences of that? My surgery is in 19 days. I want to be as informed as i possibly can. i have a pre appointment with the surgeon in 15 days, so im sure ill ask lots of questions then. Just looking for any info in the mean time. Any Help greatfully appreciated :)
My story: 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 ). 3 weeks ago i had an IPSS test ( inferior, petrosal sinus sample ) which showed high cortisol peripheral, rt side , Normal prolactin and ever so slightly elevated ACTH. On the left petrosal sinus my cortisol was 5 times normal, my prolactin was 3 times normal and my ACTH was 20 times normal. 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.
I guess my question is, Has anyone had surgery where they didnt know what they were going to find before they went in? There is the posibility i am going to have my whole left side of my pituitary gland removed, not just a tumor. What could be the possible consequences of that? My surgery is in 19 days. I want to be as informed as i possibly can. i have a pre appointment with the surgeon in 15 days, so im sure ill ask lots of questions then. Just looking for any info in the mean time. Any Help greatfully appreciated :)
MEDICAL PROFESSIONAL
Dear LucyEvony
It sounds like evrything was well done in preparation for your surgery. It is not uncommum that we do not see a tumor in a MRI in patients with Cushing´s disease. It is pretty standard to remove half of the gland and it is called hemihypophysectomy.
Where are you in Australia, I know many surgeons over there. The ones I know are very good,
thank you
It sounds like evrything was well done in preparation for your surgery. It is not uncommum that we do not see a tumor in a MRI in patients with Cushing´s disease. It is pretty standard to remove half of the gland and it is called hemihypophysectomy.
Where are you in Australia, I know many surgeons over there. The ones I know are very good,
thank you
Update :
Saw the neuro surg for follow up. He was concerned i may have dislodged part of the fat graft so he referred me to see the ENT surgeon who did the nose part of the surgery.
I saw the ENT today. He told me how they over fill the cavity and the fat cells swell after time and when i vomited on saturday its certainly possible some of the fat leaked out. He had a good look in my sinuses and said no real damage done. but he did say the nasal sprays i was using were not doing a good enough job. So he gave me a sinus rinse kit to use. I have to go back to see him next week and if the rinse doesnt get things moving, he is going to give the crud up there a bit of a kick start ( whatever that means). he said and i quote " i dont want to do it today and ruin a friendship so fast " LOL, so im guessing if i do have to have help, it wont be pleasant.
So i did a sinus rinse tonight/ it hurt like hell, sharp pain going right thru my sinus and i still have a headache 3 hrs later. BUT and its a Big BUT !!! That horrid, rancid, rotting taste has been replaced with a medicinal type taste !!! :). Got to be happy with that.
The Neurosurg also wasnt happy that i was vomiting so arranged for me to see the Endos while i was at the hospital. ( good to do it all on the one day :), my appointments were all made one week apart ).
So i saw the Endo, my hormone levels from 2 weeks ago were all pretty good except for borderline low thyroid. So they arranged for me to have more hormone blood tests done again. They also increased my desmopressin at night as im still getting up to the toilet 4 times a night.
They also told me to stay on the tablets instead of desmo nasal spray til we sort my sinuses out ( this was better than what my private endo wanted me to do ).
Over all im happy with the care im getting. I still feel pretty crappy, but i keep being told its early days yet :)
Next thing on the agenda is a bone density test next week .
And thanks Daniel for responding again. My Blood pressure and Blood sugars have remained stable. i am losing weight and im hoping to get off that last diabetes medication some time soon :)
Saw the neuro surg for follow up. He was concerned i may have dislodged part of the fat graft so he referred me to see the ENT surgeon who did the nose part of the surgery.
I saw the ENT today. He told me how they over fill the cavity and the fat cells swell after time and when i vomited on saturday its certainly possible some of the fat leaked out. He had a good look in my sinuses and said no real damage done. but he did say the nasal sprays i was using were not doing a good enough job. So he gave me a sinus rinse kit to use. I have to go back to see him next week and if the rinse doesnt get things moving, he is going to give the crud up there a bit of a kick start ( whatever that means). he said and i quote " i dont want to do it today and ruin a friendship so fast " LOL, so im guessing if i do have to have help, it wont be pleasant.
So i did a sinus rinse tonight/ it hurt like hell, sharp pain going right thru my sinus and i still have a headache 3 hrs later. BUT and its a Big BUT !!! That horrid, rancid, rotting taste has been replaced with a medicinal type taste !!! :). Got to be happy with that.
The Neurosurg also wasnt happy that i was vomiting so arranged for me to see the Endos while i was at the hospital. ( good to do it all on the one day :), my appointments were all made one week apart ).
So i saw the Endo, my hormone levels from 2 weeks ago were all pretty good except for borderline low thyroid. So they arranged for me to have more hormone blood tests done again. They also increased my desmopressin at night as im still getting up to the toilet 4 times a night.
They also told me to stay on the tablets instead of desmo nasal spray til we sort my sinuses out ( this was better than what my private endo wanted me to do ).
Over all im happy with the care im getting. I still feel pretty crappy, but i keep being told its early days yet :)
Next thing on the agenda is a bone density test next week .
And thanks Daniel for responding again. My Blood pressure and Blood sugars have remained stable. i am losing weight and im hoping to get off that last diabetes medication some time soon :)
MEDICAL PROFESSIONAL
Thank you LucyEvony for all your feedback. It is great to hear that your major issues are under control. I am sorry you are having a hard postop period.
Please keep us posted.
Please keep us posted.
OMG
How bad does this get???
Yesterday i had some pretty violent vomiting !!! ( went and got some Ondansetron which helped with that)
I was a bit scared cos after that i got some pain in my nose, i was worried about getting another CSF leak....but 4 weeks down the track i thought it would be highly unlikely.
Anyway, after the vomiting episode my nose filled up with junk and i had to blow. I hadnt really done a Blow yet, not a good one anyway. So i blew and yep (TMI) a nice big chunk came out. No big deal !!! The rest of the day was uneventful.
This morning OMG!!!!! This cant be right
I was so clogged up when i woke i did another nose blow....and yep another big chunk came out. But this time it Smelt like !!!............. I dont know.......... DEATH!!!! ROTTING !!!! Something so bad it made me sick.
Now i have a constant bad taste in my mouth and i can smell that smell constantly. I brushed my teeth, ive been using mouth wash i just cant get rid of it. I cant eat every thing tastes rotten.
This is so grose its beyond liveability !!!!!
I dont know what else to try
Im seeing the Neuro team in 2 days...im hoping if its an infection they will be able to get rid of it ( antibiotics). Just cant do anything til then cos its easter and nothing is open grrrr.
This is truely disgusting !!!
How bad does this get???
Yesterday i had some pretty violent vomiting !!! ( went and got some Ondansetron which helped with that)
I was a bit scared cos after that i got some pain in my nose, i was worried about getting another CSF leak....but 4 weeks down the track i thought it would be highly unlikely.
Anyway, after the vomiting episode my nose filled up with junk and i had to blow. I hadnt really done a Blow yet, not a good one anyway. So i blew and yep (TMI) a nice big chunk came out. No big deal !!! The rest of the day was uneventful.
This morning OMG!!!!! This cant be right
I was so clogged up when i woke i did another nose blow....and yep another big chunk came out. But this time it Smelt like !!!............. I dont know.......... DEATH!!!! ROTTING !!!! Something so bad it made me sick.
Now i have a constant bad taste in my mouth and i can smell that smell constantly. I brushed my teeth, ive been using mouth wash i just cant get rid of it. I cant eat every thing tastes rotten.
This is so grose its beyond liveability !!!!!
I dont know what else to try
Im seeing the Neuro team in 2 days...im hoping if its an infection they will be able to get rid of it ( antibiotics). Just cant do anything til then cos its easter and nothing is open grrrr.
This is truely disgusting !!!
I don't have DI myself - but I know a couple of people that do... some do well on the spray some like the pills, and others actually do a combo of both. So I hope you have a doc that is flexible with what works for YOU.
As for the blocked nose - sit over a bowl of hot salt water with a towel over your head at least 2x a day to get things moving. There is more than, um, mucus up there - but there are scabs. They need to be loosened up. When they fall out is is horrific as they appear to be the size of some of the Greek Islands.
I used saline gel (from ocean) or non-scented heavy cream from eucerin (not the lotion, the cream) to sooth my nose even on the inside. I used a cotton swab.
The low Na, high K means your cortisol is too low - so you need to up your sodium intake. Really work hard at eating more salt and salty food.
The chloride is for mouth breathing. The rest, is, as you assume, I believe you are correct, from the DI.
As for the blocked nose - sit over a bowl of hot salt water with a towel over your head at least 2x a day to get things moving. There is more than, um, mucus up there - but there are scabs. They need to be loosened up. When they fall out is is horrific as they appear to be the size of some of the Greek Islands.
I used saline gel (from ocean) or non-scented heavy cream from eucerin (not the lotion, the cream) to sooth my nose even on the inside. I used a cotton swab.
The low Na, high K means your cortisol is too low - so you need to up your sodium intake. Really work hard at eating more salt and salty food.
The chloride is for mouth breathing. The rest, is, as you assume, I believe you are correct, from the DI.
My periods stopped 2 1/2 years ago when this all went haywire. I never had any menopause symptoms except for cessation of menstruation. But im presuming now im either experiencing menopausal sweats or its something else.
I did see my Endocrinologist a few days ago and told her but she just looked like Hmmmm and didnt really say anything of use lol
Im constantly having tests ( well it seems that way :) ).
I have U & E 's done every week. I have low sodium, high potassium, low chloride, low urea, high creatinine, very low eGFR, high Anion Gap and high osmolality. I presume all caused by the Insipidus.
Im having Hormone tests 4 weekly for now.
I have a follow up with the Neuro team in 5 days.
And a bone density test in 2 weeks.
I think i'm being well looked after except i have a few not really important questions i ask the endocrinologist and they get brushed aside like it doesnt matter. But it matters to me. For example, she didnt answer my question re sweats....maybe she doesnt know. And she also wants me to start on nasal desmopressin but my nose is still sore and blocked and when i told her that she just did the facial Hmmmm look again.
LOL
It's almost like what i say/ my questions are not important, just do as i say !
Well thats how i feel anyway
Thanks for your response anyway :). I get better responses here than i do from my own doc :)
I did see my Endocrinologist a few days ago and told her but she just looked like Hmmmm and didnt really say anything of use lol
Im constantly having tests ( well it seems that way :) ).
I have U & E 's done every week. I have low sodium, high potassium, low chloride, low urea, high creatinine, very low eGFR, high Anion Gap and high osmolality. I presume all caused by the Insipidus.
Im having Hormone tests 4 weekly for now.
I have a follow up with the Neuro team in 5 days.
And a bone density test in 2 weeks.
I think i'm being well looked after except i have a few not really important questions i ask the endocrinologist and they get brushed aside like it doesnt matter. But it matters to me. For example, she didnt answer my question re sweats....maybe she doesnt know. And she also wants me to start on nasal desmopressin but my nose is still sore and blocked and when i told her that she just did the facial Hmmmm look again.
LOL
It's almost like what i say/ my questions are not important, just do as i say !
Well thats how i feel anyway
Thanks for your response anyway :). I get better responses here than i do from my own doc :)
Post-op, my hormones got very weird. I got my period at weird times. I got hot flashes.
But call your doc and see if you need to get other tests. The one thing you also have to watch post op is sodium and the sweating can wash it all out.
But call your doc and see if you need to get other tests. The one thing you also have to watch post op is sodium and the sweating can wash it all out.
Ok
Here is an interesting one
17 days post removal of Pituitary gland ive started having random cold sweats, full on body drenching sweats !!
I checked my sugars thinking i was Hypo'ing, sugars are really good normal.
Checked my blood pressure, Perfect !!! no problems there.
When im sweating i get very weak in the legs and although i dont feel dizzy i do feel if i got up to walk ide collapse.
Is this related to Cortisone( hormone) Issues???
I even thought maybe after surgery im suddenly having menopause symptoms No hot flushes, just sweats?? ( i had no menopause symptoms when my menstruation stopped suddenly 2 yrs ago)
When i was in the hospital i had these body drenching sweats most nights, but my sugars were 2.2 (39). That i can understand. But i just had a sweat about 10 minutes ago and my sugars were 6.0 (108)
So i guess my question is, What else can cause Sudden sweating?
Here is an interesting one
17 days post removal of Pituitary gland ive started having random cold sweats, full on body drenching sweats !!
I checked my sugars thinking i was Hypo'ing, sugars are really good normal.
Checked my blood pressure, Perfect !!! no problems there.
When im sweating i get very weak in the legs and although i dont feel dizzy i do feel if i got up to walk ide collapse.
Is this related to Cortisone( hormone) Issues???
I even thought maybe after surgery im suddenly having menopause symptoms No hot flushes, just sweats?? ( i had no menopause symptoms when my menstruation stopped suddenly 2 yrs ago)
When i was in the hospital i had these body drenching sweats most nights, but my sugars were 2.2 (39). That i can understand. But i just had a sweat about 10 minutes ago and my sugars were 6.0 (108)
So i guess my question is, What else can cause Sudden sweating?
Glad you are doing better!
Wow, so nice to hear that you are alright after all this. I hope you will have a calm recovery from now.:)
Surgery Completed and I live !!! LOL
I spent 11 days in hospital, 5 of those in the high dependancy unit.
Still mega tired and taking things extremely easy.
The result was i had my whole pituitary gland removed. They only left a very small amount that attaches to the stalk behind. I had Hyperplasia of the ACTH cells, not an actual adenoma.
I had a CFS leak during the operation that was repaired with a fat graft from my right thigh.
I spent several hours in recovery as i had uncontrollable vomiting post surgery.
With in hours of surgery DI set in. I was passing 900mls of Urine every 20 minutes. The docs were pumping me with fluids as fast as they could.
I was commenced on Desmopressin and im still on that twice a day now.
I developed Hyponatremia and Hyperkalaemia and i'm currently having blood tests every 3 days to check my electrolytes. ( was blood tests 4 times a day when i was in hospital, My poor veins !!! )
I was on hydrocortizone twice a day but they stopped it the day i was discharged. they want to see how much if any cortisol my body is producing. Ill be having a full hormone panel test done next week.
Now im home, Im tired, thats to be expected :). I do get up n do things but only last an hour then need to rest again. This will improve with time.
I am sooooooooooooo thirsty !!!!!!! I cant stop drinking, sometimes i drink so much im too full to eat. The thirst is incredible !!
And my lower body aches like you wouldnt believe...i feel like my Butt is dragging on the ground, and its painful to sit for long. My Hips and lower back feel crushed.
Other than that, Im totally amazed that the surgery has resulted in a total turn around with my diabetes and High blood pressure.
My Blood pressure went from an average of 180/105 to an average of 110/70
My sugars which were extremely high were giving me Hypo's, and i was having to eat at 2am to get me thru the night. They are now a very stable normal level :). Im mega impressed.
The actual surgery wasnt too bad. It was a Transsphenoidal Surgery ( they went thru my nose). I was worried about sneezing, i havnt sneezed once yet, worried about being so blocked up, but really, its not so bad :)
I dont remember much of the first 3 days post op...i only know what my doctors and sister told me. But honestly the surgery was the easy part :)
Now i just have to work with the Endocrinology team to get all my hormones working properly :)
I hope this info helps another person who has similar experience.
I spent 11 days in hospital, 5 of those in the high dependancy unit.
Still mega tired and taking things extremely easy.
The result was i had my whole pituitary gland removed. They only left a very small amount that attaches to the stalk behind. I had Hyperplasia of the ACTH cells, not an actual adenoma.
I had a CFS leak during the operation that was repaired with a fat graft from my right thigh.
I spent several hours in recovery as i had uncontrollable vomiting post surgery.
With in hours of surgery DI set in. I was passing 900mls of Urine every 20 minutes. The docs were pumping me with fluids as fast as they could.
I was commenced on Desmopressin and im still on that twice a day now.
I developed Hyponatremia and Hyperkalaemia and i'm currently having blood tests every 3 days to check my electrolytes. ( was blood tests 4 times a day when i was in hospital, My poor veins !!! )
I was on hydrocortizone twice a day but they stopped it the day i was discharged. they want to see how much if any cortisol my body is producing. Ill be having a full hormone panel test done next week.
Now im home, Im tired, thats to be expected :). I do get up n do things but only last an hour then need to rest again. This will improve with time.
I am sooooooooooooo thirsty !!!!!!! I cant stop drinking, sometimes i drink so much im too full to eat. The thirst is incredible !!
And my lower body aches like you wouldnt believe...i feel like my Butt is dragging on the ground, and its painful to sit for long. My Hips and lower back feel crushed.
Other than that, Im totally amazed that the surgery has resulted in a total turn around with my diabetes and High blood pressure.
My Blood pressure went from an average of 180/105 to an average of 110/70
My sugars which were extremely high were giving me Hypo's, and i was having to eat at 2am to get me thru the night. They are now a very stable normal level :). Im mega impressed.
The actual surgery wasnt too bad. It was a Transsphenoidal Surgery ( they went thru my nose). I was worried about sneezing, i havnt sneezed once yet, worried about being so blocked up, but really, its not so bad :)
I dont remember much of the first 3 days post op...i only know what my doctors and sister told me. But honestly the surgery was the easy part :)
Now i just have to work with the Endocrinology team to get all my hormones working properly :)
I hope this info helps another person who has similar experience.
Just got a phone call from my endo.
Last weeks tests results are in
Apparently my cortisol has skyrocketed since the last tests that were done in january.
Endo is now very concerned and is speaking to the surgeon this afternoon to see what their plan is.
Im now also having an Echocardiogram tomorrow !
How High is a High MN saliva result ?
I dont know what the range is...mine was 24 in january and is 95 now
24 hr UFC was 462 nmol in jan and is 687 now
And apparently dexa suppression was so minor it didnt matter
Last weeks tests results are in
Apparently my cortisol has skyrocketed since the last tests that were done in january.
Endo is now very concerned and is speaking to the surgeon this afternoon to see what their plan is.
Im now also having an Echocardiogram tomorrow !
How High is a High MN saliva result ?
I dont know what the range is...mine was 24 in january and is 95 now
24 hr UFC was 462 nmol in jan and is 687 now
And apparently dexa suppression was so minor it didnt matter
Saw the surgeons today. Got lots of info !!!
They said i have a 50/50 chance of success
They also said i'll be in hospital 7 days minimum ( i thought it was much less than that )
Everything is now set for friday. Just have to have one last CTscan / MRI before surgery ( they use those scans during the Surgery )
They also explained a bit more about post op testing and need for Hormone coverage etc
I feel like im in good hands :)
So i guess ill see you on the flip side :)
They said i have a 50/50 chance of success
They also said i'll be in hospital 7 days minimum ( i thought it was much less than that )
Everything is now set for friday. Just have to have one last CTscan / MRI before surgery ( they use those scans during the Surgery )
They also explained a bit more about post op testing and need for Hormone coverage etc
I feel like im in good hands :)
So i guess ill see you on the flip side :)
MEDICAL PROFESSIONAL
Dear LucyEvony,
The reason prolactin is tested in the IPSS is to somehow evaluate the pattern of drainage of the cavernous sinus. So, if prolactin predominantly is higher in on side, like it is on the left for you, then the idea is that a proportional elevation of ACTh in that same side may not be significant. In your case the ACTH is actualy proportionally higher in the left than that seen for prolactin. My interpretation is that there is a possibility your adenoma may be on the left.
The reason prolactin is tested in the IPSS is to somehow evaluate the pattern of drainage of the cavernous sinus. So, if prolactin predominantly is higher in on side, like it is on the left for you, then the idea is that a proportional elevation of ACTh in that same side may not be significant. In your case the ACTH is actualy proportionally higher in the left than that seen for prolactin. My interpretation is that there is a possibility your adenoma may be on the left.
I have some sites listed in the health pages in the patient forum - scroll to the bottom (we keep trying to move them to the side but they keep sinking to the bottom... harder to find).
I had to learn too. Lucky for me there is a huge network of patients on line and where I live there are a tons of people with Cushing's which of course, makes of all wonder how rare it really is!
I had to learn too. Lucky for me there is a huge network of patients on line and where I live there are a tons of people with Cushing's which of course, makes of all wonder how rare it really is!
Ok so i shouldnt read to much into things :)
We are all different i know that.
I dont know why prolactin was tested in the IPSS as my prolactin blood tests done back in December were normal. Maybe its just a standard test they do.
Well im doing all the tests again anyway, probably a good idea to have a more recent base line pre op anyway.
Im still learning and reading :)
Thanks for your help rumpled :)
We are all different i know that.
I dont know why prolactin was tested in the IPSS as my prolactin blood tests done back in December were normal. Maybe its just a standard test they do.
Well im doing all the tests again anyway, probably a good idea to have a more recent base line pre op anyway.
Im still learning and reading :)
Thanks for your help rumpled :)
I meant super as in great!
I did not present like a normal Cushing's person. I had low BP, no glucose issues, low cholesterol and I did not gain weight until about 6-7 years into my known tumor time. My ACTH was also very normal which made the source difficult to determine.
When I had my IPSS my results showed high on both sides, but dropped (!) in the middle of the test (got tired...) and then popped up again. It was weird for sure.
My Cushing's tumor was more on my left though. If you look at my pics, I have a pic of my tumor muck up there. BTW I bleed more than most. That was also caused, I think, by my Cushing's.
It is, IMHO, more standard to be atypical to be typical. I know hundreds of Cushing's patients - none of us but a couple were typical. I am not sure why she thinks your test is atypical except for the addition of the elevated prolactin. I ended up with a separate tumor for that - I only know about 3 of us with that. My tumor twin and one other.
I did not get prolactin tested with my IPSS... cool.
I did not present like a normal Cushing's person. I had low BP, no glucose issues, low cholesterol and I did not gain weight until about 6-7 years into my known tumor time. My ACTH was also very normal which made the source difficult to determine.
When I had my IPSS my results showed high on both sides, but dropped (!) in the middle of the test (got tired...) and then popped up again. It was weird for sure.
My Cushing's tumor was more on my left though. If you look at my pics, I have a pic of my tumor muck up there. BTW I bleed more than most. That was also caused, I think, by my Cushing's.
It is, IMHO, more standard to be atypical to be typical. I know hundreds of Cushing's patients - none of us but a couple were typical. I am not sure why she thinks your test is atypical except for the addition of the elevated prolactin. I ended up with a separate tumor for that - I only know about 3 of us with that. My tumor twin and one other.
I did not get prolactin tested with my IPSS... cool.
Ok another question.
Ive been reading that not everyone presents the same with Cushing's disease.
I received a phone call from the Neurosurgeon at the hospital where i had my IPSS test, saying the results indicated a microadenoma on the left side of my pituitary gland.
Yesterday 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.
I got the Endo to tell me the actual results: this is what she told me
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
Im now second guessing the need for surgery if my results are indeed ATYPICAL. Any ideas what makes these results Atypical. What constitutes a " normal " or " Abnormal " result. Im totally confused now !
Ive been reading that not everyone presents the same with Cushing's disease.
I received a phone call from the Neurosurgeon at the hospital where i had my IPSS test, saying the results indicated a microadenoma on the left side of my pituitary gland.
Yesterday 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.
I got the Endo to tell me the actual results: this is what she told me
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
Im now second guessing the need for surgery if my results are indeed ATYPICAL. Any ideas what makes these results Atypical. What constitutes a " normal " or " Abnormal " result. Im totally confused now !
Thanks Daniel for your response. That puts my mind at ease some what :)
I am in Melbourne. I am attending the Austin Hospital. The Doctors working with me are Gavin Fabinyi and Guz Gonzalvo and Byrdon Dawes.
I think im in good hands :). I just like to know everything i can before i go in and be prepared with questions :)
I am in Melbourne. I am attending the Austin Hospital. The Doctors working with me are Gavin Fabinyi and Guz Gonzalvo and Byrdon Dawes.
I think im in good hands :). I just like to know everything i can before i go in and be prepared with questions :)
Thanks for your response :)
I will be reading up on cushings disease over the next few days.
Im in Australia and as such i dont think we have specific Pituitary centers.
I am going to one of the best Hospitals with some of the best Neurosurgeons in Australia ( and i guess the best thing is My sister is their boss :)).
Apparently there will be 3 top surgeons doing my Operation, neurosurg / ENT and 1 other? ( guess ill find that out )
So what makes a super endo as opposed to a regular endo?
Im honestly not sure about my endo at this stage. She rang me after i got my IPSS results and said she wanted to stabilize my sugars before i had surgery ( thing is we have been trying to stabilize them for months and nothing works). The neuro surgeon spoke to her, explaining that while my cortisol was so high, my sugars may never stabilize. The surgeon said she then agreed. Thing is she told me she would call me after their meeting and she hasnt. I just not to sure ! I'm thinking i might speak to the hospital and get a hospital appointed Endo and have all my appointments at the same place. Im presuming the third person involved in the surgery will be endo related?? Maybe they can recommend someone.
I will be reading up on cushings disease over the next few days.
Im in Australia and as such i dont think we have specific Pituitary centers.
I am going to one of the best Hospitals with some of the best Neurosurgeons in Australia ( and i guess the best thing is My sister is their boss :)).
Apparently there will be 3 top surgeons doing my Operation, neurosurg / ENT and 1 other? ( guess ill find that out )
So what makes a super endo as opposed to a regular endo?
Im honestly not sure about my endo at this stage. She rang me after i got my IPSS results and said she wanted to stabilize my sugars before i had surgery ( thing is we have been trying to stabilize them for months and nothing works). The neuro surgeon spoke to her, explaining that while my cortisol was so high, my sugars may never stabilize. The surgeon said she then agreed. Thing is she told me she would call me after their meeting and she hasnt. I just not to sure ! I'm thinking i might speak to the hospital and get a hospital appointed Endo and have all my appointments at the same place. Im presuming the third person involved in the surgery will be endo related?? Maybe they can recommend someone.
I would read up on Cushing's syndrome, in particular Cushing's disease (which is the form causes by a pituitary tumor). I had Cushing's disease myself.
As for being a mess - that is pretty standard. No one is quite the same, but the belly weight happens to most (not all). I had an IPSS too. Some times the little buggers just do not show up but the surgeon can see them when they go in.
As for surgeons, I hope you are at a pituitary center, have a neuro-endo, and your surgeon has done 50 surgeries this year and more than 500 so far. I say this as surgical experience is the number ONE factor in a good outcome for your pituitary surgery. Number two is the anatomy of your tumor and you have no control of that.
Surgical recovery usually takes a short time - but hormonal recovery takes a lot longer. So know that after surgery you have a road ahead of you as your body adjusts back, and that you may or may not have to take replacements - some temporary, some permanent. You must have a more than decent to super endo on your side. A regular endo usually will not suffice.
As for being a mess - that is pretty standard. No one is quite the same, but the belly weight happens to most (not all). I had an IPSS too. Some times the little buggers just do not show up but the surgeon can see them when they go in.
As for surgeons, I hope you are at a pituitary center, have a neuro-endo, and your surgeon has done 50 surgeries this year and more than 500 so far. I say this as surgical experience is the number ONE factor in a good outcome for your pituitary surgery. Number two is the anatomy of your tumor and you have no control of that.
Surgical recovery usually takes a short time - but hormonal recovery takes a lot longer. So know that after surgery you have a road ahead of you as your body adjusts back, and that you may or may not have to take replacements - some temporary, some permanent. You must have a more than decent to super endo on your side. A regular endo usually will not suffice.
Ohhhh And 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 !
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 !
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 :)
Anyway thanks for reading, i look forward to any responses :)
I sound like a mess lol. Im just hoping that surgery can find what they are looking for and i can get better :)
Anyway thanks for reading, i look forward to any responses :)
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