gp apt re cushings

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Had my long awaited gp (uk) apt today to discuss my private cortisol blood which was 893 taken at 9am (range 171-536) his first words were you dont look like someone with cushings, i told him about my osetoporisis, central weight gain, hump (which i think i have i will try and upload a photo,) he dismissed it all, then he said give me a few mins too read up about cushings lol, he then took another cortisol and glucose blood I will get the results next week if it is high he will contact the head of endocrinology, am not sure why he took the gluose blood x

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  • Posted

    Hiya

    Sometimes when you have cushings you can develop diabetes. I have been fortunate and haven't developed it.

    Hope you get answers soon x

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  • Posted

    Just to say that the Diabetes you may get with Cushings has nothing to do with your blood sugar at all.  It is called Diabetes Insipidus and simply put means that you wee more than you drink and can become de-hydrated.  He may have tested you for ordinary Diabetes.  Very few G.P's or indeed consultants know about Insipidus.  That is why you should see an Endocrinologist.  If your G.P. has never seen a Cushings patient before he really shouldn't comment.  I put on 4 stone and had a waist of 45inches.  Having been a model this came as a bit of a shock!  At least you are on the way now.  Let us know how you get on.
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    • Posted

      Thanks fiona and vicky for your replys, vicky does that mean the glucose blood he took might be a waste of time, what should he have took to test diabetes insipidus?
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    • Posted

      I just read up about it vicky it is urine that gets tested not blood, he really didnt have a clue, he said if my 11am cortisol came back high, he would call the head endocrinologist x
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  • Posted

    Hi JazzyAnne , just checked through my records , my cortisol was 746 before I had adrenal gland removed . Your doctor needs to read up a bit more ! Hope you are getting support. Everyday I could feel the pressure building up in my body from water retention & high blood pressure which caused damaged which showed up on my brain scan- please get them to listen as it is dangerous to continue untreated . Shout at your ignorant doctor if necessary x
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    • Posted

      Annie i was exhaused at the end of the consulatation, he said it was a ramdom blood taken at 9am, so he took one at 11am yesterday , I  will let you know the outcome, i said i have a hump he said you dont, i said i have put weight on round my tummy and can feel water retention, he said we all put on weight , hes very inexperience in my view hes was about 30 at least
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  • Posted

    Hi Jazzyanne smile

    The first words my Endocrinologist said was " you dont look like someone with cushings " lol. After 5 months of test after test after test All outside normal range. My cortisol was 1262 at 8am, Midnight saliva was 542 and my ACTH was 680. She kept taking more and more tests cos she didnt believe i had cushings as i didnt look typical ! My blood glucose levels were going stupid from as low as 2 up to 29 massive swings. My blood pressure was so high doctors thought i was going to have a stroke. In the end i by passed my endo and asked to be referred to the neurosurgeon at my local hospital. He did an MRI and an Inferior petrosal sinus test which suggested a microadenoma on the left side of my pituitary gland. I had my pituitart gland removed 14 months ago and have just recently ( in the last month) stabilized my sugars and blood pressure and my cortisol is now in the normal range smile. Sooooooo Dont let doctors tell you you dont look like / your not typical/ we are all different and we all present differently.

    I dont think he is looking for diabetes Insipidus at this stage, its more likely to be diabetes melitis he is looking for as he is doing a blood glucose test. I did have diabetes insipidus after my surgery. This can sometimes happen as the hyperthalamus gets irritated. Most times its not long acting. I was passing 900ml of urine every 15 minutes so the pumped me full of fluids, The next day i looked like the Michellin marshmallow man lol. It took about 3 weeks to regulate my desmopressin ( medication for diabetes insipidus) but by 6 months post op i no longer needed it. Every now an then i do get low kidney function on my tests but i just make it a rule to drink more.

    I wish you luck. Tell him no one is typical. They dont know that much about cushings to rule it out on a look. If your levels are high something isnt right. I would be asking to see the head endo !

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    • Posted

      Hi Debs thanks for all your feedback, he said if the 11am test is high he will contact the head endo. , my urine always shows protein and sure if that means anything x
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  • Posted

    Jazzyanne a small amount of protein in the urine can occur from time to time, but if you are showing protein in your urine all the time, this could indicate early kidney disease. Have they done full kidney tests including GFR, Anion Gap,sodium, potassium, creatinine? If not get them to check full kidney function.
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  • Posted

    Question...what unit of measure are your blood serum numbers?   ug/dl, ng/ml or nmol/L ???   I am trying to compare statistics with mine, and mine must be in a different metric.   When I converted into what I think is your measurement I got 618 on my midnight saliva 3 day assay.   If I converted right....LOL.   

    When you first started getting symptoms, did it start slowly?   First thing I noticed was insomnia, and restless sleep.   Then headaches, then little trials with anxiety, now my other hormones are messed up too...

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    • Posted

      Michelle My results are nmol/l. If you are in the US your resulsts should be in ng/ml.

      As for symptoms...mine were very slow onset. I'm pretty sure I had high cortisol at least two years before we started testing and as much as 20 years !!! As i look back on my life i realise so many things could have been different if i had been tested much earlier.

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    • Posted

      Thanks.   I do not have tremendous weight gain, maybe 6-8 lbs so far.   But feel like I cannot eat anything without gaining, eat very light.  But I am an athlete, I play field hockey and train for it year round.  Type of person who does 150 ab crunches a day and pushups and planks.   I do not have the striae marks on my abdomen either.   But I understand that may be the later "full blown" onset symtoms.   

      My endocrinologist immediately said PCOS.   But most women who have that had menstrual disturbances, irregularity or ammenorea FIRST, and then the other symptoms.   My cycle has always been completely regular and still has been since last month.   Maybe I am cycling without ovulating.   That is possible, I am trying to verify this month with basal temps.   

      My cousin has pituitary tumor, but it gave high prolactin, not cortisol.  

      Do you know the source of your high cortisol?   Adrenal adenoma?   Pituitary?   Other?   

      Thank you so much.   

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    • Posted

      Hi Michelle,

      I had very high cortisol from a begign tumour in the Pituitary Gland which I had removed in 2012.  Before I started getting symptons I was a model sized 12.  By the time Cushings was diagnosed I weigh 14 stone and had a 45" waist hence the search for the striae by GP's..Do you take any steroids for training etc as too mush cortisteroid can spark off Cushings.  As I have said before I hope that both you and Sarah do not have Cushings and that you will soon be sorted. Most G.P's will never see a Cushings patient and so really have no knowledge, also we are all so different that there are few standard symptoms. My G.P and I think I had probably had it for at least 3 years before diagnosis.  if you have Cushings then everything you eat goes straight to fat so I carried on eating as normal. I was only diagnosed in the end after tests for everything because I watched Doc Martin on TV.  Went to see my lovely GP and said that the TV programme had mentioned 2 symptoms, sweating and excessive hairiness which I had not mentioned as I thought they were just "personal problems".  Don't give up!

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