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Opinions and help!!

Posted , 4 users are following.

jess08
jess08

Hey there, I'm 19 I've had Cushings before and developed type 1 diabetes through it.. no one ever believed me and the doctor I was under said I was just depressed and I needed mental health counselling! They finally found that I wasn't lying years later and I had the tumour removed in 2013, the last 18 months I've had all the exact symptoms and how I used to feel.

I've had the suppression test and a urine, my urine came back high but my suppression test came back normal.

2 weeks ago I had an MRI scan which confirms I have a 3mm swelling in my pituitary gland, now my endocrinologist who's also my diabetic doctor basically sent me a letter saying I had the swelling and a 3mm lump but will scan again in another couple of years.....!!!!!

I now have a miracle baby as I say because I was told by my surgeon that there was 99% chance I wouldn't be able to have a baby... my endocrinologist keeps putting the way I feel down to having a baby that it's tiring and exhausting... I know that and like I also said to her I've been through this before and I know when there's something wrong with my body!

I have my moon face back, my buffalo hump, extreme weight gain, facial hair completely everything..

This ruined my school years.. and I'm starting a job soon and I'm really scared that no ones helping and making excuses again for the way I feel, I don't want this affecting me again and ruining my chances of everything.

I just want some opinions of how you think I should go about things, due to misdiagnosis I developed type 1 diabetes which limits my lifestyle on occasions.

I just need help...

thank you in advance??

0 likes, 5 replies

5 Replies

  • cycliccushings
    cycliccushings jess08

    Posted

    Hi jess

    I'm sorry that you are struggling with getting your doctor's to believe you and act on testing. If they only did one urine test and one suppression test and then see a issue on the MRI and state you are fine, then your doctor's are idiots, which it is nothing new that Dr's are not following thru with treating you. You deserve to be listened to. Where do you live? You need to be more forceful with your thoughts and opinion I'm your diagnosis. Have they done blood tests? In my opinion after seeing there is,a problem showing on the MRI I do not understand why any Dr would tell you that he was going to wait 2 years before checking again. You need a second opinion, I'd find another dr, research who to go to.in your area. There will be more answers I'm sure in reply here.

  • vicky61456
    vicky61456 jess08

    Posted

    Like cyclic I cannot understand how you can be sent away for 2 years without further tests.  You must ask to have a second opinin.  As you say if you have had this before then surely they should do more tests at least!
  • jess08
    jess08

    Posted

    I live in Wales, I've tried to be forceful with them and it finally got me to have the tests and the MRI in the first place!

    I just don't understand how they can just palm me off with yeah you just have a 3mm swelling in your pituitary but we ain't doing nothing... my headaches are so severe sometimes.. and as having Cushings the first time I know what there like and they don't go with any pain killer!

    It's like I'm living back almost 5 years ago it's all happening over again, they had to do loads of bloods, Sylvia tests, suppression tests, urine tests and now all they done is a poxy blood that came back okay and a urine test that came back high and an MRI confirming something there... but don't want to investigate..

    like why do we have MRI scans to find things like this and your not even going to take action on it!

    Just makes me a mad!!!!

    But thank you girls I took both your opinions on board and I've managed to get in contact with my surgeon I was under for the removal she's really not happy with what's going on and is requesting my files to be taken back up to Cardiff so she can see me herself...

    I appreciate your help😊

    • vicky61456
      vicky61456 jess08

      Posted

      So glad you have managed to get in touch with your surgeon, it sounds as if you might be getting somewhere at last!  Let us know how you get on and Good Luck!
  • Coc87
    Coc87 jess08

    Posted

    I agree with ye all, u need to be more forceful. To doctors ur a name an a number. If u don't shout an look out for number one, no one else will. Either request another endocrine doctor, get back to ur gp An get them to push things, or go private. U shouldn't have to but I had to An it was well worth it. Terrible that they have seen ur MRI An they're just brushing u off. I'm mad for u. My advice is to shout louder An ring sectaries also, the more u do the more they remember u An u flag up to them An they'll just want u to stop shoutin so they'll get u seen. Really hope u get some where. As u say u know ur body! Do not give up!! Or get ur politicians involved? Wud that stick a rocket up there arses (pardon the bad manners haha) but it maddens me that they just brush u off.

    Hope u get sorted!!!

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