Cyclic Cushing’s syndrome (CS) is a rare disorder, characterized by repeated episodes of Cortisol excess interspersed by periods of normal Cortisol secretion.
Helloooooo !! = Im doing this Blog as a ongoing record of my BLOODY NIGHTMARE with the Doctors !! - lol - I have MANY MANY times now told you of my Problems - ( ohhhhh woe is me ! ) So - for people that DONT KNOW -
Here is a VERY QUICK oversight into my symptoms list
Diagnosed
2 x Pituitary ( brain ) Tumours
Enlarged Pituitary Gland
Duel Organic Personality ( Due to the Tumours pressing on parts they should not ! )
Borderline PCOS
Extreme Hypothyroidism
High Blood Pressure
Further Symptoms
Buffalo Hump
Acne
EXTREME TIREDNESS
Brain Shuts down when i try to think
Pain when i try to do things - ( From walking to washing up to eating / brushing teeth )
VERY easy bruising
Terrible to extract blood - Veins are non existant
VERY clumsy
Cant think
Blurry eyesight - Peripheral vision goes - and then comes back
EXTREME ANXIETY
EXTREME DEPRESSION
EXTREME UNCONTROLLABLE RAGES
EXTREME HYPERACTIVITY
( Looks VERY much like Bi-polar - But - I have been seen by 5 x Psychiatrists and they say - CATAGORICALLY - It is NOT !! )
Irregular Menstruation
Going very hot and then very cold
BRAIN FOG to extremes
Unable to talk ( Very Slurry and Stuttery )
Giddy
Extremely Childlike ( But to be fair - Not 100% sure if this isnt just ME !! ;) !! )
If walk upstairs - when i get to the top - I cant think or talk or move - i have to stand still while my head gets back to normal )
I am 22 stone - I eat a very normal amount ( taking into consideration the amount i do - not alot ) - and unable to exercise due to the pain -
I was Gym'ing it 5 x a week for 2 hour sessions - One hour in the Gym - and one hour Aqua Aerobics - WHICH I UTTERLY LOVED - but - when I had an episode at the Gym ( I fell off the treadmill as my brain shut down - i was unable to talk - and think ) and they They stopped me - saying it was dangerous for me to be there as i was unstable and unsure as to whether i was going to 'storm'
I am unable to be left alone with my own Children now as i am so very unstable in my moods - I also Don't go out alone in case my brain shuts down - as i am totally unable to do or say anything when this happens.
I come in and out of 'Storms' regularly - Something i do with ease - BUT it has a terrible devistating effect for those around me - I could go two weeks with being OK = BUT - then i have a re-lapse ... When i am OK - I try EVERYTHING to do what i can - when i can ....
I don't Drink or Smoke - B.O.R.I.N.G !!
OK - so - I am being treated with Levothyroxine for the Thyroid / Propranalol for Low Blood Pressure / a Mix of Anti Depressants- Even though i am ALMOST 100% sure i am NOT depressed !! = and DIAZEPAM - To bring me back if i Storm - This i am NOT addicted too - ( Doctors have told me to take 5 tablets - BUT - This does NOTHING - So - I self Medicate - I have regularly now - Taken upto 15 Tablets in one day = and this is usually the same for a few days - then - i dont need any for maybe over a week - ( I'm NOT hooked !! ) If i DO NOT take this amount - i end up trying to Commit Suicide or Getting an Out of Control Rage where i become VERY ABUSIVE and aggressive ..... ( Neither of which i am usually !! - SERIOUSLY - IM LOVELY REALLY !! ;) !! )
OK - So - Thats a Brief OverView - and WOW - FOR ME THAT WAS BRIEF !!!
Ohhh i also have an Unhealthy Obsession - ( well it's not unhealthy to me ;) !! ) with David Tennant - and i drink far too much Coffee !!
Right - The UPDATE
I have been waiting since November for results of the overnight dexamethasone suppression test checks to see how taking a corticosteroid medicine (called dexamethasone) changes the levels of the hormone cortisol in the blood. This test checks for a condition in which large amounts of cortisol are produced by the adrenal glands (Cushing's syndrome) Pituitary Gland ( Cushing's Disease ) .
Normally, when the pituitary gland make less adrenocorticotropic hormone (ACTH), the adrenal glands/Pituitary make less cortisol. Dexamethasone, which is like cortisol, decreases the amount of ACTH released by the pituitary gland, which in turn decreases the amount of cortisol released by the adrenal glands.
After taking a dose of dexamethasone, cortisol levels often stay abnormally high in people who have Cushing's syndrome. Sometimes other conditions (such as major depression, alcoholism, stress, obesity,kidney failure, pregnancy, or uncontrolled diabetes) can keep cortisol levels from going down after taking a dose of dexamethasone.
The night before the blood test, you will take a pill containing dexamethasone. The next morning, the cortisol level in your blood will be measured. If your cortisol level remains high, Cushing's syndrome may be the cause.
The reference ranges for blood cortisol are as follows:
- Morning - 7-28 .
- Afternoon - 2-18 .
- Stimulated* - ≥ 18
- Suppressed** - < 2
I am waiting for the ( Think he was a Junior ) consultant to ring me - I dont hold out much hope on that one - he told me to check my sinus
( But - to be fair - said he had heard of a Cyclical lady who was in a Mental Hospital for 25 years before they Diagnosed her - BUT as it was VERY Rare - He was sure it wasnt that !! ) -
AND THEN SECRETARY / AND A LETTER TOLD ME I HAD TWO PITUITARY TUMOURS - Not Just the one that i knew about - apparently i have one on the left and one at the back !!
GETTING ANGRIER BY THE SECOND !!!!!!
I have now done emailed the Pituitary Foundation ( Pat was SO HELPFUL last time ) as GP laughingly told me its not Cushings as my level was suppressed to under 30 with the dex test,
I asked what my level was BEFORE the suppression,
The GP - Laughingly said - " It's NORMAL - It's NOT Cushings "
- and so - AGAIN -
I repeated - " WHAT WAS THE BLOOD COUNT BEFORE the test was done"
He said AGAIN, .... " Mrs Barry, it's under 30, Thats OK, *Laugh* , Ive looked into it just now, it's fine, * laugh * it's NOT Cushings " -
So I REPEATED AGAIN - "WHAT WAS THE FIRST SET OF BLOODS RECORDED" He said ......" - You do not understand, It is Normal range" ...
I asked what The First set of Blood results were - OK - The second set say it was under 30 - BUT WHAT WAS THE BEGINNING BLOOD TEST RESULTS ?? " ..... -
He said He could only see one set of records - I asked him to CHECK - THEN - He said he would look it up -
After 5 minutes - he said the First Blood Test Result was 297 ......
I've just looked it up, and it says normal range is under 28, so, he didn't take into account the first test ??
OK - I suppressed - BUT = Apparently - FROM MY RESEARCH = NORMAL IS BETWEEN .05 AND LESS THAN 28 - AND I SUPPRESSED TO 30 - SO - I SUPPRESSED TO THE HIGHER END OF THE SPECTRUM - MY BEGINNING RANGE WAS 297 .............
I asked the GP ( Who i will not name here ) to URGENTLY send the results to the ENDOCRYNOLOGIST who had asked for the test to be carried out -
he asked why ................. *
Shaking my head * I said Because he is in charge of my case - and i CANT LIVE LIKE THIS FOR MUCH LONGER * ..... he said that he would .... I Gave the Fax Number and person to address it too ...... It took a month for them last time - NOW IT'S TAKEN ANOTHER MONTH for them to sit on their hands and hold onto Blood Test Results - MEDICAL NEGLECT im beginning to think - Considering - They were the ones to tell me - AFTER I HAD BEEN TOLD I HAVE A BLOODY BRAIN TUMOUR - To try YOGA !! .........
I had a Email back from Pat at the Pituitary Foundation ( Almost Immediately ) UTTERLY FANTASTIC - and Basically - she said
" Right, You should Call Davina back ( at UCHL ) and get the chaps bleep -
Summarise what you told me about non-communication ( Results and letter ) and that your GP has delayed things -
Then : Keep him on the phone explain in brief words he should get about
your headaches - dull / throbbing and intense
severity of your symptoms on scale of one to ten
when symptoms started
how often you have them
any causes that bring pain on
Elaborate with him the next EMERGENCY appt id Aug and even your arranged appt in May is going to make it difficult for you as you are left in pain with no firm diagnosis. Tell him you are desperate.... "
( Keep him on the phone explain in brief words he should get :
Your headaches - 1) dull - 2) between the eyes - 3) right at the back of my head - 4) throbbing or 5) So very intense, that i have tears - but not crying - & that i have to sit in a quiet dark room with no stimulation AT ALL
severity of your symptoms on scale of one to ten ( always a 6 * Never feel Utterly Fabulous * - Off scale at 100 !!!!! - Totally uncontrollable and unbelieveable unless you see it - Even my face and body changes shape )
when symptoms started - 9 years ago
how often you have them - Daily - sometimes four times a day - then may be a let up for a week - two weeks - then they come back
any causes that bring pain on - Anything - No rhyme or reason to it - and one day brushing my teeth will put me in bed - but another day i can do hoovering and full house clean and be ok - push through it - Totaly Hyper
Pat went on to say a few other things - but that was all off record - but - the lady is a saint and so utterly helpful and well - she made me feel so much better
I phoned Davina Immediately -
" Im just leaving work now "
I just reiterated that i hadnt heard from him - and she said
" - I have Emailed him - Nothing more i can do untill he picks his Emails up "
I started to cry ( Pathetic i know - but couldnt stop )
She said he had no Bleep and No ext Number - and id have to wait and be patient ..........
I just said i'd have to wait then - between sobs .....
I couldnt even get out of bed this morning not even to check that my kids had breakfast and a drink to go to school with - Thank Christ my EX is still living here - and he made sure they were ok .....
I am Still awaiting news of the Consultant to ring me - from University College Hospital - APPARENTLY = i have to be patient and wait for them to pick up their emails - LUCKYFOR SOME THAT THEY CAN GET INTO WORK AND DO A BLOODY JOB ISNT IT .....
'Do a Job' ...... is said very loosely
I honestly thought by being sent to University College and my troubles would be fixed - it's just added stress
I Just phoned University College Hospital - LONDON - I seriously cant take much more - They have not been in touch - They have No URGENT Appts till Aug - mine is 3rd May -
BASICALLY - they are awaiting my Dex Blood test Results ( A normal result is a decrease in cortisol levels upon administration of low-dose dexamethasone. Results indicative of Cushing's disease involve no change in cortisol on low-dose dexamethasone - I had this done before - and had a NO CHANGE result - Nothing done - ) BLOODS : TAKEN AGAIN IN NOVEMBER
The Doctors have NOT sent results to UCHL - and Basically - Are sitting on their hands - Handing out as much Diazepam to MY EX who tells them I want it - I have NOT actually spoken to the GP myself - ( A grade 4 LISTED drug - that I am taking by the bucket load - That every time I collect - they ring through to the Crisis Team for agreement ! )
so - AWAITING CALLS FROM DOCTORS AND CONSULTANT -
WILL KEEP YOU POSTED - ANY COMMENTS GRATEFULLY RECIEVED
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