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From First symptom to diagnosis and Post Surgery !



From First Symptom



I am Deb, a 50 yr old woman who has been well relatively unwell for the past 2 years, mega worse in the last 6 months ( i havnt worked for 6 months now ).

I have been to so many doctors had so many tests. The result was always increase meds, then increase them again.

You see I have diabetes. My parents both have High blood pressure. So it was not unreasonable for me to have high blood pressure as well.

2 yrs ago i started Vomiting ( thought it was gastro, didnt bother going to the doc, he couldnt do anything ), only problem was it kept going on and on...intermittant vomiting...so after a few weeks i went to see the doc. While i was there he checked my Blood pressure and it was 234 / 131 ( that was on 2 different blood pressure lowering medications). He sent me off to the hospital thinking i had malignant hypertension. Hospital did tests, nothing wrong go home. Note : My blood pressure has been unstable ever since. I'm now on 3 different meds and they dont do a great job.

I guess i should add here that my Menstruation just stopped here as well. Stopped dead, no signs of menopause as such, just nothing.

1 yr ago my normally very stable Blood sugars became mega unstable. Massive swings from 3.6 ( 64.8) to 29 ( 544 ) and back down again. Highest readings first thing in the morning before breakfast. These massive swings were making me ill. Added a new Tablet to my already taking tablet, no real effect, tried byetta ( made me sick), then on insulin which is where im at now. There is an improvement but its still unstable.

6 months ago i became very irritable, my body aching, lower back, hips, legs, fingers, i became what i could only describe as chronically fatigued !!!! +++++

I started losing weight on the scales but my upper abdomen was becoming bigger and bigger. I was so uncomfortable ( and still are ) reflux +++, cant get comfortable sitting or lying, muscle cramps in my abdomen like you wouldnt believe ( talk about painful ).

My doctor wasnt really doing anything other than upping medications at each visit.

So in desperation i asked to be referred to an endocrinologist. I just thought it was my diabetes getting me down.

After an indepth Assessment of my medical history and having a general look at me, she set about arranging a series of tests. 24hr Urine, Midnight saliva test, low dose dexamethazone suppression test, serum cortisol / acth test / followed by a repeat of all the above. At no time telling me what the tests were for. Then i did a 2 day dexa suppression test, CTscan from neck down and an MRI of head. I was then told my cortisol was high and they needed to do a petrosal sinus sample to see where the cortisol was coming from.


Finally i had an answer for all that had been going on.

These were my Petrosal test results


Normal values

cortisol ( 64-618)

Prolactin ( 102- 496)

ACTH ( 7.2-63 )


my results Peripheral

cortisol 969

prolactin 263



Rt petrosal sinus

cortisol 985

prolactin 289



Lft petrosal sinus

cortisol 1018

Prolactin 618

ACTH 680


I got a call from the hospital ( neurosurgeon ) asking me to come in and see him and we booked me in for a Transsphenoidal surgery

The appointment is monday week and the surgery booked for next friday week.


They still havnt diagnosed Cushing's but the word has been thrown around. So i dont even really know if thats what i have. They told me the IPSS test indicates a Microadenoma on the left side of my pituitary gland. I guess they are waiting for the surgery to confirm !!!


I am just glad They finally found something tangable. I was beginning to feel like a hypochondriac.

Not to sure i want Cushing's or a pituitary tumor, but darn, its better than nothing and here take another pill !!!!


So now i have 1 week before surgery to get myself as informed as i can. So i can help myself get better following surgery.


First Pituitary Operation



March 21 2014 til June 18th 2014


Surgery is today the 21st of March. The plan !!! First to see if any Microadenoma's are present and remove said adenoma. If no Adenoma evident, to remove the left side of the pituitary gland and send to the lab for pathology. Depending on pathology, either end surgery or hypophysectomy ( remove the whole Gland ).

Pathology during surgery showed an overabundance and hyperplasia of the ACTH cells. So the surgeon decided to be aggressive and removed 95% of the pituitary gland.

A CSF leak occured during the operation and was repaired by a fat graft.

The operation took 5 hrs.

In recovery i started constant vomiting and was kept in recovery until they could stabilize me. I also started passing copious amounts of urine. At some stage, possibly during surgery an indwelling catheter was inserted. I was passing 900mls of urine every 15 to 20 minutes. i was commenced on desmopressin and IV fluids to replace the fluids being lost. I continued to pass approx 900 mls of urine every 20 minutes for the next 24 hrs.

I remained in the High dependancy unit for the next 5 days.

I actually dont remember any of those 5 days. I am only going on what my sister told me.

After 5 days i was moved to a single room. I still had the catheter in but my urine output had stabilized to 700 mls per hour. The IV was removed and i was asked to drink to thirst. I was incredible thirsty and all i wanted was Iced water, the more ice the better. I got incredibly irritable when the nurse brought me warm tap water !!!!!

4 days later the indwelling catheter was removed. I continued to pass approximately 400mls per hour. My desmopressin was increased. Once the catheter was removed i was running to the toilet every 15 to 20 minutes, even during the night !!! was shocking.

On the 12th day post op i asked to go home :). I missed my Puppy ( Cookie Leigh ) badly. So they said i could go home. Woohoo.

I went home with no cortisol replacement, Just desmopressin for the diabetes insipidus.

My Puppy was totally beside herself when she saw me...im sure she thought i was dead ! Poor little love :) I was happy to be home.


Post Op - the first 12 weeks

April 2014 til June 2014


April 2014

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 :)

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?

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.




It's almost like what i say/ my questions are not important, just do as i say !


Well thats how i feel anyway......





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 !!!


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 .


I hope this info helps another person who has similar experience.


May 2014


Anyway..... I am now 8 weeks post Op.... I had Most of my Pituitary Gland removed. They only left a small piece attached to the Stalk.


I have been struggling with severe fatigue and Nausea. Had some tests done last week and this is the results




Thyroid function is good FT4 13.8 (10.0-19.0 ) ...previous result was 12.2...other thyroid tests were just as good, so no probs there




serum osmol good 288 (275-300 )




FBC WCC high 12.6 (2.0-11.0 ) previous result was 11.7... Lab notes state Patient with long standing lymphocytosis.




Here is the interesting Parts






have always been a little out....but


ALT 41 (<35 )............. previous results 48


AST 49 (<35 ) 48


ALP 138 (30 - 115 ) 86


GGT 146 (<35 ) 83




My Dr sent me off for further testing...she wants to see if i have any inflammation eg medication induced hepatitis


Anything to cause severe fatigue.




My cortisol levels are as follows




Midnight saliva cortisol 8.1 ( < 3.0 )... either the surgery wasnt so successful, something else is elevating my cortisol or it just takes forever for levels to drop !!!! ????


I dont know how i can still be producing high cortisol levels if i have next to no ACTH cells.




Morning serum cortisol is Normal but is going up. I was expecting it to go down


This test result


541 ( 119-618) previous result i had a 260 (11 days post OP), then a 440 (4 weeks post op) and now 541 ( 8 weeks Post op)




Hmmmmmm dont know what to think



Should i be concerned with those cortisol results? Im totally baffled



I should have mentioned The Endos at the hospital ceased my hydrocortisone the day i was discharged. I have had No hormone replacement at all since discharge, except Desmopressin for Diabetes Insipidus

I have to have one more lot of tests in 4 weeks before i see the endo.


I am sure my work will be expecting me back at work some time soon, but i couldnt work right now if i tried !!!!


Lucky they arent pushing me


Deep breath..... was hoping this was the End of it !!! Oh well i cant have another Pit surgery, they said they took almost all of it out.


Think ill ring and see if i can see the endo earlier ...


Finally managed to get my endo appointment changed from 22 july to 17th june. Still 3 weeks away but better than it was.


Doing another lot of tests the week before i go. But they are still not doing ACTH!!!! I dont know why !!! Maybe when i see them, ill demand it.


Had some more tests done


pancreas is fine.


Both inflammatory markers are elevated


serum c-reactive protein (CRP) 26 / reference range (0-10)

Erythrocyte Sedimentation rate (ESR) 52 / range < 20


Doc thinks could be caused by inflammation from surgery


liver function update


ALT still 41

AST 53 up from 49

ALP 127 down from 138

GGT 132 down from 146


Doc thinks that may also be post surgery related


I'm mainly worried about the cortisol, so will see what next lot of tests in 2 weeks say.


June 2014


Last lot of test results are in


Morning cortisol is now 1252 ( range 119-618 ) :( :( :(


See the Endocrinologist on tuesday


The midnight saliva result wasnt back....that would be the second time the labs have lost those results.

Saw the Endo yesterday


Back to the drawing board... We are doing a full range of tests


24hr urine, Midnight saliva, Dexa suppression test, Fasting glucose, 8am serum cortisol, FSH, HGH, Insulin like growth factor 1, LFT, LH, OL, Prolactin,TSH, Thyroxine free, triiodothyronine Free, U&E, creatinine, ACTH, HA1c, FBC,


Including MRI


Then see the neurosurg and Endo again in 4 weeks


Ive been really down since yesterday. Feel like this is never going to end. Wish i could do something to help the doctors find out whats happening, but what do i know.


Got to pull my self out of the self pity's

I must remember there are people out there worse off than me.

I should count myself lucky that i didnt have to wait years to be diagnosed like some people.

My sisters are taking me out for a girls weekend in 3 weeks just to get away and have some fun :) Something to look forward to.


I still feel down. But its not severe. I cant talk to my partner cos he just says its all in my head ( well it kind of was with the pituitary, but thats not what he meant ). He thought ide just have the surgery and be all ok after !!!

Now that im not hes just like, what next !!!!


I'm going to go do some baking.... not that i eat much these days, but it gives me something to do :)

All tests completed except MRI which is booked for saturday.

Its an MRI with contrast...i cant remember having contrast with the pre surgery MRI's ( i had 2 pre )


I got my hair cut short too :)

It will always grow back so no biggie and my arms just wont allow me to spend time with my hands above my head...so much easier for now.


I do seem to be able to walk a bit easier at the moment, but it still fatigues me. So im walking when and for as long as i can without pushing it.


My partner mentioned Munchausen Syndrome to me the other day, suggesting maybe im doing something to myself to cause this. My response is How on earth can i cause this??? what on earth can i do ???

He was like, it was just a thought !!!


I was like, well dont think it !!!!


He thinks eating lemons may cause it. I have a lemon squeezed in water each day.


Personally im thinking he has some pretty strange ideas !!!!


Anyway...Just waiting for results and the MRI now. i should be able to get prelim results by friday. Then its only 2 weeks til i see the neuro/ endo again


Im a bit tired ( didnt sleep well last night) and a bit off my food today, got a bit of nausea, but at least my mood has picked up a bit :)


Im thinking ill take my partner in on my next appointments so he can see whats going on for himself.

Interim results


24hr urine / midnight saliva ...results pending ( not completed)


Post dexamethazone cortisol High 889 ( range 119-618). My last result without suppression was 1252, so does this look like it suppressed but just not fully???


ACTH <1 Lol ( range 7.2- 63.3) I would be expecting a less than 1 result with my pituitary gland removed. No ACTH cells left there. Does this result mean no ACTH cells elsewhere. So what else raises cortisol??? if i have no ACTH ?


Fasting glucose has gone up from 4.5 to 11.6 Getting too high again


HA1c is 7.1 still slightly high, but does show better control over the three months than before surgery...it was 8.8 then 7.7 right after surgery now 7.1. My sugars were good for a month and have slowely risen over the last 2 months.


All other hormones are normal cept prolactin which is low 41 ( range 102-496).


Insulin like growth factor 1 is pending


Full blood count normal

LFT has same raised elements / no change in liver function

U&E normal

Creatinine normal

The Lab lost my 24hr urine !!!! Grrrrr


How do they do that ?


Its a BIG bottle not a little round tube !

Post op 16 weeks and Looking down the road to a second surgery !!!


July 2014

I had an update at the hospital today...this is where im at now :)


I saw the Neurosurgeon first..... We had a bit of a chit chat lol. he is sooooo nice :)

He told me my test results all point to a pituitary issue except one result which is ambiguous.

He said when they did my surgery it was quite aggressive and they only left 5% to protect the hypothalamus.

He discussed the results with the endo and decided to let them do more tests and we will recheck again in 1 month.

I also spoke to him about having to sit for days with my head in a bowl and the diarrhoea.... he doesnt think its related. he asked several questions and thinks i possibly have a blocked bile duct ( he said my liver function tests also back that up ). He said its outside his expertise and i need to see a general surgeon and he sent a letter to my GP.


Then i saw the endocrinologist.... She isnt as nice doesnt like to chit chat lol, but is nice enough and does her job.

Any way she looked at all the results. My 24 hr urine was still pending, she rang for the results and they still werent done !!! from 3 weeks ago !!!

And they only completed the MN saliva this morning...which was very high, even higher than pre surgery. And i did not suppress on dexa.


She went to have a chat with the head of endocrinology to make sure they are doing whats best for me then came back and......


She pretty much said what the Neuro said....all results point to a pit source...but due to the fact that there is only 5% of pit left they want to have a VERY clear picture of whats going on before they take any drastic steps. She said the Risk rate with the second pit surgery is a lot higher and they dont want to cause any hypothalamus involvement unless absolutely necessary.




The plan is to repeat all tests each month for the next 3 months and i see both the neurosurg and Endo after each lot of testing.

See if there are any trends, changes, if the picture becomes clearer.

Keep a close eye on my Blood pressure, which was quite high today and my Blood glucose, and adapt medication as required... Started back on insulin today.


So thats where i am at.


I certainly dont want to be rushing back to surgery, so im happy to do the 3 months of testing. Ide perfer they have that clear picture, if its possible to get one :)


Now i need some sleep, havnt had much in the last 24hrs, was awake most the night !!! and had to be up early to go to the hospital. :)




August 2014



Latest test results


8am cortisol 603 ( 119-618 range) down from last result which was 889 one before that was 1252...so thats a decent drop


ACTH 35 (7.2-63.3) last result was undetectable below 1, so now normal


24hr UFC 489 high ( Below 150 ) last result for 24hr urine got lost Grrr


So thats interesting results !!!


See Endocrinologist and Neurosurgeon on the 12th August to discuss these results.




07 /08/ 2014


Went to see my GP and she wasnt happy with my blood pressure. Sent me off to the hospital to be checked out. Said they probably wont even admit you !!!!

Yeah right Discharged 11/08/2014 !!! Wasnt prepared to stay either.


Oh well


So while i was there, major changes to blood pressure meds, and Changed insulin from slow acting to a mix of fast and slow. See if we can stabilize both BP and sugars


Had lots of tests done while there as well


07/ 08/ 14 cortisol 5:45pm : 1190 H (64-327)


08/08/14 cortisol 8am : 944 H (240-618)


10/08/14 cortisol 8am : 647 H post dexamethazone


11/08/14 cortisol 8am : 522 post dexamethazone


08/08/2014 ACTH <1.0 L (7.2 - 63.3 )


10/08/14 and 11/08/14 ACTH result to follow


Liver function tests are now all over the place


old results now range


ALT 58H 59H <33

AST 58H 94H <32

ALP 96 124H 35-105

GGT 93H 174H <40

Globulin 31 38 H 25-35

eGFR >90 83 L >90

chloride 98 95 L 98-107


So now i'm being referred to a Gastroenterologist to check out whats going on there !!! What next !!!



Back to Cushing's


General consensus as we wait for the rest of my test results to come back is.....


There seems to be two different sources of ACTH pushing up my cortisol !


So the Endo team are going to go over all my notes and tests and devise a plan of attack.


I am sure they will try medication and see how that goes for a while.


Oh well back to the hospital for a chat tomorrow !





Went to my outpatient appointment with both the endo and the neuro's


Talk about confusing a persons mind !


My cortisol is high... thats a given


My ACTH is less than 1 after dexa.... that to me says i suppressed !


Did i or didnt i


Does that then mean my Cortisol source is NOT pituitary !!! Im so confused !!!


The docs are saying it is Pituitary sourced !!!


They have put Focal Radiation therapy on the table !!!


No decision made just yet....they are having a meeting on 15/08/14 with endos, neuro, oncology and radiology teams to discuss my situation.


I hope they are all looking at this right....maybe its me who has it wrong !!! I dont know.


Im not a doctor....but so many have said low ACTH...not pit !!! so im just plain old confused


Guess its time to write down all these questions i have in my head and make sure i get answers before we do anything at all !!!


WOW !.



latest results from 25/08/14


cortisol 1299 H ( 119-618 )


DHEA 2.1 (0.96-6.95)


ACTH 9 ( 7.2-63.3)


LH 3.9 L (7.7-59 )


Oestradiol 83 (<201)


prolactin 85 L ( 102-496)


sex binding globulin 22 ( 14-130)


testosterone 5 (1-20)


Alpha subunit glycoprotein result pending


midnight saliva cortisol 52 H ( <9)


previous midnight saliva cortisol 38 H (<9)


24hr urine 1000 H ( I query this result)??? (<150)


previous 24hr urine 489 H (<150)


Creatinine 6.8 L (7-14)

clearance 2.1 L (2.6-20 )

serum 73 (44-80)




ALP 108 H (35-105) previous result 124


ALT 62 H (<33) previous result 59


GGT 151 H (<40) previous result 174


AST 74 H (<32) previous result 94


Anion gap 23 H (8-16) previous result 20


eGFR >90 (>90) previous result 83


Chloride 90 L (98-107) previous result 95


Sodium 134 L (136-145) previous result 137


Potassium 4.5 (3.5-7.2) previous result 3.8




See Endo and Neuro again next week 09/09/14



September 2014


I just got back from seeing the docs


Cortisol is high, ACTH is normal. They decided to make a decision lol. and said its no longer pituitary related.

Yay, at least that decision is made !!! So no radiation therapy !


The endo wants to rule out any possible external source of cortisol. So has told me to make sure i dont take any herbal suppliments, no over the counter medications, no creams including skin moisturisers, no talcum powders.


I dont take anything over the counter, dont use any herbs nothing from a health food shop..... i do use skin moisturiser which i will stop, but im sure it has no steriod properties, but ill stop anyway. And ill stop using talcum powder as well ( again i doubt thats the cause ). But ill do everything they ask just so we can rule that one out as well.


I do use herbs in cooking, corriander, mint, thyme, basil etc, guess ill stop using all them as well.


Its frustrating


The endo said it will probably take a while to get to the bottom of this, so i guess ill just have to keep doing their tests.


I dont see them for 6 weeks now.


In the mean time.... with no help from the doctors, i guess i have to get myself well enough to get back to work !


Im having my eyes checked tomorrow


Ive got my Ultra sound of my liver next month


See the Gastroenterologist in november to check my nausea and abnormal liver function tests


Honestly... i feel that they think im making my body go out of wack. i dont know how i can make my blood have abnormal reading/properties.

i need a new body !


Right now, they are making me feel like its all my fault.


I think they just dont know what they are doing ! They dont know where to go from here.



I know its not something im doing, but ill do everything they say. Thats all i can do :(




18th September 2014


Had my eyes checked / visual field etc on the 10th Sept.


I dont fully understand it, but apparently 3 months ago when they did the visual field test it indicated mild swelling around the Optic nerve. They suggested retesting visual field in 3 months. So i went back and had all the same tests done again. This time my right eye was much improved but my left eye showed a definite problem in the upper right quadrant. Ive had blurred vision, but no blind spots, flashes, floaters nothing like that.


Then two days after they did all these tests, i was sitting looking at the computer and there was this smudge on my glasses. Cleaned them, hmmm smudge still there, cleaned them again, still there. noticed smudge is still there with glasses off. Rubbed eye thinking maybe i had like a film of sleep across my eye, didnt help. Blinked several times. That smudge has pretty much been there ever since.


Endocrinologist rang to say she got a call from the Opthalmologist. She has organised an urgent MRI. And im heading off to have that done in 15 mins.


God knows what now !!!!


The Endo team are having their meeting about me tomorrow. They said they may ring me to discuss things during the meeting. I dont know why they dont just include me. Are they hiding something? Dont want me to hear? Who Knows.


Guess i just wait now to hear what they come up with !


Patience my child :)





24th september 2014




Well i still dont have any results from latest MRI but today i got an appointment to the Neurology outpatient clinic !!!


I was discharged from neurosurgery and now going to neurology ????


Guess i will find out what thats all about when i get there.


would be nice if the doctor who referred me there would rign and say...hey...just gunna refer you here for this or that !!!


oh well....13th october is the Appointment so not long to wait



10th October 2014


Just got a phone call ... re my MRI results !


I am Seeing neurologist for further explaination on monday but this was the Interim result.


The post op Pituitary region is normal, Minimal Pituitary Gland remains, sella is normal. There is a Mild Generalized Bilateral Sucal and anterior interhemispheric CSF prominance. A Right sided developmental Venus Anomaly coming from the body of the right lateral ventricle through white matter lateral to the right basal Ganglia and terminating at the right ? region !!! Not sure what it all means...guess the neurologist will explain




Other results


Cortisol 1184 H ( range 118-619)


ACTH 2 L ( range 7.2- 63.3 )


cholesterol 6.4 H Up from 5.1 !!!


LDL 4.4 H


HDL 1.5 ( down from 2.2 )


Sodium, potassium, chloride creatinine all normal


Hba1c 8.0 H ( down from 8.9 )



Full Steroid profile is still pending



13th September 2014


Saw Neurologist.


First thing he says is, " There is nothing concerning in your MRI, Ok "


After a bit of a chat, a few questions, a quick assessment he says, i think its one of two things.


You either have Idiopathic Intracranial hypertension or Post Operative Migraines. I said, ive never had a migraine in my life. And he said, yeah but you have never had someone sticking steel implements in your brain before either :)


Sooooo He started me on Topamax 25mg morning and night. See him again in 8 weeks. If no improvement then, we will have to think about doing a lumbar puncture to relieve the pressure.


Started the Topaxam and so far..... Im drowsy as !!! feel like im not even in my body !!!. They say it will get better :)


See the Endocrinologist on the 21st October...next week :)



24th October


Things are pretty bad right now. cant write it all down, will come back when things settle


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