Cushings Advice/Cycled

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Hi All,

Needing some advice as it's all getting confusing lol.

I haven't felt right in years, night sweats, anxiety, depression, tired alot. I always thought it was more than that due to how bad the sweats are.

One doctor said "some woman are just like that."

So that discouraged me for awhile.

I had then gained 2 stone and had the stretch marks and back hump.

This got me refered to endo, my first urine came back high cortisol. I then did the 24 hours they came back normal.

After this I was given 30 day urine. For cycled cushings. Only 2 in 30 days came back high. (This makes me wonder why I am feeling so bad if it is only 2 days out the month high.)

I have received a letter from endo saying that I will have a scan on brain so hoping it will give me some answers.

I have been told that you can have Cushing's without the body telling so when looking for it?. They seem to think they are on right path.

It has been such a help to be able to view all stories on here. I was wondering if anyone had similar expereince. I had my first appointment at endo in September next one is in Feb. So it is taking time to figure out and can't help but think how much longer...

Thanks for reading.



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4 Replies

  • Posted

    Hi Deexxx

    Yes "Cyclic" Cushing's is rare. I was the first person in 1989 to be diagnosed with "cyclic" in the USA. They didn't believe in it and that is why it took them 9 years to diagnose me., at that time I had 23 Drs. They placed me in the ICU and did special testing which began the knowledge of Cyclic Cushings. They had a major seminar about me in Seattle Washington with endocrinologist from all over the world attended. My blood and urine wouldn't match..they'd do urine tests one time it would be sky high and next time normal. I was close to dying by the time they operated. I had like 46 symptoms: buffalo hump, moonie face, acne and cysts, extreme fatigue, mood swings (I called myself jekyll and hyde..jekyll was manic talked all the time could work like a banshee and rarely slept; hyde was your severely depressed personality with wanting to sleep all the time). In the ICU they watched my personality change, changes in how much food I would eat. I went from 105 lbs to 276 lbs in 6 months...I had Dr's who didn't believe me..said I was eating to gain the wgt...which that was not true I was eating 3 small jars of baby food a day and throwing that up.

    I'm excited that you have Dr's who are not afraid to test you for "cyclic" the testing I allowed back in 1989 has bore fruit. That is so amazing. A pituitary tumor surgery may sound bad but it's the easiest surgery I've had...and I've had it done twice, in April of 1989 ad just list last may 23rd 2016. I had a reocurring pituitary tumor. So you can see that the surgery was successful for me twice. I have had numerous medical issues, some caused by the high cortisol in my system for 9 years. So be glad that your Dr's are on the ball.

    A radiologist saved my life by seeing that the stalk of the pituitary gland was bent, that was the only suggestion of the tumor. ..the pituitary gland is the size of a pea...but as it is your master gland of the body, it regulates a lot. You can search online for more information on Cushings and if you have any questions feel free to ask them here...there are several people who can be of benefit to answer your questions. I'll be praying for you...

    • Posted

      Wow, thanks for your reply.

      Sorry I keep calling it cycled because the Dr said he is looking for a cycle in the hormone. Lol so cyclic, yes I have been told if you have it there are chances of recurance? Like you had yourself.

      Alot of your symptoms definitely sound like me. I get sick too.

      It must have been crazy for you, to be the first with a rarer type of a rare disease.

      I am hoping the mri shows something. If not it's back to either 30 day morning collection or 5 day urine but as you said definitely more knowledge now than what I imagine u had to go through to get the dianogsis.

      Thank you for being the first and so open to help the doctors understand the disease and to still help people now all the way from Scotland. Thank you.xxxx

  • Posted

    Hi I noticed u said you were in the uk,I am also . I am currently been tested for cushings but I feel it cyclic I had a high normal morning cortisol of 510 I have done 1 urine test which has came back fine ( I suspected it would ) and I have just done a low dose dexamethazone that I'm pretty sure came back fine also because i didn't feel I was in a high faze I have got one more urine to do so I'm trying to gauge when to do it as I know I will be totally dismissed if this comes back normal , I also had symptoms that seemed like acromegaly and had a hard job getting Drs to believe me on that but turns out that these things are due to insulin resistance which can be caused by cushings .insulin resistance on its own would not cause the hyper euphoric spells I go through and then sore body and vomiting afterwards and loads of other stuff .sorry I could go on .Would you mind messaging me privately and telling me which doc you've been seeing . I paid to see a specialist and travelled who said of insulin resistance and cushings and sent a letter to my gp to order them cause of expense so if it's all clear square one again .every other possible thing has been ruled out .it is only this left if one more dr tells me it's stress or just anxiety I'm gonna scream ! but I can't afford to do it again and pay for the amount of tests needed for cyclic and the 2 endos locally I've seen already in the past and just dismissed me nightmare!!why I paid to travel feel like I'm hitting a brick wall again thank you in advance , it's nice to speak to someone else that understand what it's like

  • Posted

    Deexxx u are waiting a long time. I'd be pushing harder if I was u.. I've had symptoms since 2012, hypertension which I managed to control, peeing a lot, night sweats, palpations on an off, irregular periods, didn't sleep much, until this time last year, then it Cushing's reared it ugly head completely. I was never investigated until last year for it.

    So I took unwell, an the hypertension couldn't b controlled. I went private to cardiac dr as it was gonna be 40 weeks before one would see me through nhs. At that stage I was gainin weight, didn't know why as I was at gym flat out an eatin well, uncontrolled bp, face was gettin rounder, my chest/shoulder area was swollen, fat deposits on my back, palaptaions were worse, couldn't do things in the gym i normally could, muscles An bones weakening but I didn't really realise. Wen dr said he doin a cortisol rest I googled an Cushing's came up, I saw the symptoms An knew straight away that was What I had. I diagnoses myself in Aug. I done 3 24hr urine tests An blood tests with dex. Had MRI. An In Nov I was diagnosed by one hospital An referred then to another. Which I was seen in Dec, went in as in patient in Jan an they confirmed Cushing's. Ct showed it not my adrenal. Ther is some thing on my pituitary gland. But Currently I'm doin the 28 day urine an saliva test as the petrosal sinus test did not confirm black An white that it my pituitary gland. Think there testing for cyclical Cushing's. But all tests An things I've had done I've pushed An rang sectaries etc. Cuz if u don't push they don't care. An every day I get worse. It ain't nice at all. If u haven't had scan ring them an ask them to contact u if they get a cancellation. I dunno whether any of this helps? But my advice is it to not give up!

    Rare Claire bear (as I have now named myself haha)


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