Does this sound like cushings.?

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Ive recently found out that my pituitary gland is bigger than what it should be, and im terrified that im dying as i dont feel well at all.

I have researched and it seems i do have slight symptoms of crushings disease:

Lump on back of neck which ive had for years, really tired, fatigued, really down, weakness, achy feelings, irritable, headaches, acne,dizzyness, memory loss where i forget what im saying , im sure my face has got rounder, and i also have gained weight.

I had just had blood tests on thyroid and glucose levels.

But right now i feel so ill and im pretty sure im going to die soon.

Im having another mri on my gland in 10 days.

Is it too late now if it is cushings? Someone please help....

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  • Posted

    that does sound like cushings but dont worry you cant die from it, i have cushings too ,soo any questions id be happy to help
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  • Posted

    Hi Emily,

    Diagnosis of Cushings is very hard and because it is so rare many GPs will never see a case so will not recognise the symptoms.  It took  at least 3 years for my Cushings to be diagnosed.  Don't give up, keep asking your Doctor for a test for Cushings and cheer up.  It is a horrid disease but there are people out there who will support you.

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    • Posted

      Yes I experienced all that as well.My initial symptoms weren't as pronounced,so as it wasn't easily recognisable,nothing was done except an adrenal scan.About 5 years later,I started getting very noticeable symptoms like you're describing,and finally had loads of bloods done,including Cortisol,which came back abnormal.They just don't look for it,because of its rareness.Mine was put down to depression,early menopause,and a virus,before it was diagnosed.Good luck,and keep pestering your GP.Mention Cortisol testing.
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  • Posted

    Instead of making a new post; i thought id write it here..

    My other mri of my pituitary gland showed nothing but confirmed that my gland is enlarged.

    Can adrenal tumours/cancer enlarge the pituitary gland?

    My glucose level is normal but my thyroid is very slightly under meaning that it cannot be classed as abnormal and cant be treated. The doctor was even contemplating on wether i need to see an endocrinologist!

    Right now im so worried about adrenal cancer as im aware that the prognosis is very very low and early stages are very hard to spot. Everyday i feel worse.

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    • Posted

      Hi Emily,

      I finally got to see an endocrinologist,as I said,after having an abnormal cortisol result.I found out who I was being referred to,and wrote them a letter,saying how bad I was feeling.On a separate sheet,I wrote my FULL list of symptoms,so that everything could be assessed together.The day the Endo received my letter,I was asked to come in that afternoon,and she knew immediately that I had Cushings.I was so upset,and drove home crying all the way,BUT hugely relieved that I had a diagnosis.My son was 6 years old at the time,and I had to face him and my husband when I got home.Make notes of everything you feel is wrong,so that you can give a full picture,and get your diagnosis.Wish you good luck.We're supporting you on here.Gill

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    • Posted

      That sounds like a really good idea. The only thing that is stopping me is my mum as she still thinks that its all in my head and she just doesnt want to belive that there is something wrong.

      when the doctor said that he will talk to his collegues about sending me, my mum said to the doctor that it isnt nessacary as "there arent any symptoms" which annoyed me so much as my mum doesnt actually know how i feel everyday.

      she thinks illness is when youre in agony and that because a few blood tests such as glucose and iron came back normal, she thinks theres absolutely nothing wrong. this leaves me in a position where things are left and appointments and tests don't get done all because my mum thinks im fine

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    • Posted

      Yes. It's a bit like people thinking there's nothing wrong,just because they can't see it, like a broken leg! I'm afraid I've had years of that,with people who think I can keep busy and forget about things.It doesn't work in practice,sadly.Good luck and keep in touch. Gill
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    • Posted

      Hi everyone,

      I totally agree with what everyone is saying.  I also had Cancer which produced a massive amount of sympathy but to most people as my endocrinologist said "Cushings is not a sexy diease.  Most people think we are just fat slobs who eat too much chocolate!  I would really like to find a common denominator for people who have had Cushings.  Maybe a bllod transfusio, a skull fracture or a traumatic life changing incident.  Good luck to us all.

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    • Posted

      i just wondered if either of you would know; would my glucose level be out of wack?

      mine is normal so im not sure wether that is a good thing or not.

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    • Posted

      People who are diabetic already may be more likely to get Cushings but even that is rare.  Your sugar levels shouldn't be out of wack.  Why do you think they are?  There is something called Diabetes Insipidus which has NOTHING to do with your sugar level.  Most G.P.'s and A & E staff don't know what it is.  It means basically that you wee a lot and drink a lot of wate and eventually you can become dehydrated.  There is a special test for this and if you have it you will be given a tablet to stop you getting up in the night.  Brilliant for me!!
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    • Posted

      Hi Vicky and Emily,I'm in the same position.Never had any issues with glucose levels,but I do have diabetes insipidus,which I take a tablet at night for.Gill
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    • Posted

      What i read is that excess cortisol will increase glucose levels. I havent been aware of me having diabetes insipidus. I normally wee alot anyway after drinking alot. Ive been this way since i was little, always going to the toilet every half an hour rolleyes i dont do this now though. Very rarely i wake up needing the toilet, all the other times i just wake up for no reason so i think im safe unless they do emd up doing tests
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    • Posted

      Hi Emily,I had most of the symptoms listed for Cushings,but not glucose problems or high blood pressure.Diabetes Insipidus was diagnosed after the pituitary operation.If I didn't take a tablet to get through the night,I would keep having to get up for the loo,and would feel as if I needed a drink then too,and in the morning I'd feel very dry and really need a drink.Because I need the loo a lot anyway,I carry a bottle of water in my handbag most of the time.
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    • Posted

      Well now youve actually described it, i do some of those things. Even if im going somewhere quick in the car, i always take water and im constantly refilling my water bottle at college and like you said about the dryness in the morning. Ill have to talk to the doctors about getting some decent tests done because at the minute theyre not helping me at all.

      can an adrenal tumour cause this? Or not having a tumour at all? Since my pituitary gland is clear i can only think of one more place which is my adrenal glands.

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    • Posted

      Hi Emily,

      Cushings can be caused by a benign tumour in the pituitary,adrenals,and sometimes elsewhere in the body.If you're really fearing it,you do need to discuss your fears with your doctor,and as I said previously,write a list of ALL the things you feel are not right,so he can put it all together.Gill

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    • Posted

      Okay. I did mention cancer to the doctor but he didnt really say anything apart from everything nasty in my brain has been ruled out. I have read though that adrenal carcinomas are more common in teens and young children and it is very agressive and the prognosis is very poor which freaks me out.
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