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Update from previous post

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Hollaka79
Hollaka79

Hi to all my new Cushie friends

I'm starting a new post as the last one was regarding steroids & Cushing's diagnosis so just a quick update from  me.

I ended up back in hospital again yesterday after I noticed more swelling around my collar bone (I already have severe swelling of face & neck & a big humpback), I called my GP & they wanted to see me (I was actually more concerned that I had picked up an infection and it was my glands that were up as had just injected my Humira the day before & I have to contact a Dr if I believe there's any sign of infection due to it shutting down my immune system). Dr took my pulse & BP & my pulse again was very high (like it's been for a while now). She called the hospital & they said I needed to go in. So off I toddled. Again. Get to the ER & pulse was 157 so got taken straight into majors & hooked up to a load of machines. Gave me fluids & a pill which then crashed my pulse rate (made me go super faint & nauseous but did the job!) Then medical ER dr said was the humira causing the tachycardia so needed to stop that (que panic as dont want the crohns flaring), but wanted to check with gastro. Gastro came out who knew all about Cushing's & said wasn't the humira causing the tachycardia it was the Cushing's & that was also causing the swelling on collar bone. She then said it was very unlikely that the steroids had caused the Cushing's as apparently it takes a long time for Cushing's to develop with steroid use & it wouldn't have come on this quickly - it literally came on in the last 6 wks & been on steroids on/off since Aug last year (with a 4 month gap in the middle).  So she said I needed to have a CT/MRI of adrenal glands & to be seen by the endocrinologist. Meanwhile I am seeing a cardiologist on Tuesday to try & keep my pulse & BP down. 

I'm really new to all this & I know there's a few ladies on here who are experts on Cushing's & have helped me tremendously so any input is appreciated. It seems one Dr says one thing & another contradicts it... 

0 likes, 4 replies

4 Replies

  • cycliccushings
    cycliccushings Hollaka79

    Posted

    Hi Hollaka

    I been watching your posts..it's really good that someone is finally addressing your Cushings issues...I'm hoping they are going to check both adrenal

    and pituitary glands..what is so horrific is getting a endo that isn't arrogant and really wants to figure it out why you have all these symptoms..I'm praying they are not going to think text book Cushings tests are the only way you have it...none of us match...every patient is different. I had told the forum that it looked like I had a 3rd pituitary tumor, well my Drs here in the small town I live in don't know what they are doing. However, I'm facing another rare situation as my ATCH level was at 46..at the top range when they operated to remove my large pituitary tumor in May of last year. So my neurosurgeon had my primary Dr do hormone tests. I came back with ACTH at 62, which suggests now with all the rest of the hormones all screwed up, that there now is big chance I have an ectopic tumor...which can be in several places. I had first thought I was going to end up with the queen b*** of endo in Seattle, but she would not accept my ins, so I've hopefully got a endo that was trained in Oregon at one of our CSFS hospitals, and I'm more confident that I will have someone who can handle my rare situation, as its going to be hard to figure out where the tumor is.

    So I'm glad they got your high pulse rate down..there are just so many awful symptoms with Cushings that mimic other illnesses and most Drs are not really up on Cushings, most have never seen a patient with it.

    Be sure if they get you diagnosed to find a surgeon that knows how to do the surgery. One that is well known for that type of surgery. You do not want an inexperienced surgeon for this. I'm praying for you, I know it seems like a long time, but I been dealing with this since 1985, yep 32 years. But have heart. See im still here, so thats positive. I hope othets will post here. We try to respond and we do care.

    • Hollaka79
      Hollaka79 cycliccushings

      Posted

      Thank you for replying, you have been through so much yet you still take the time to help others so you are a super warrior & I appreciate it ??

      I'm in the UK so we have to go to the consultants that are "zoned" to us (a bit like school zones in the US), so I'm really limited to whom I can see (unless I go private & pay for it which as a single mom of two can't afford to do). I lived in FL for years so I guess I'm better off here with the free healthcare, it just means it's a lot more long winded than over there as you have to go through so many hoops.. The ER gastro I saw was quite clued up on Cushing's & she was the one that suggested I needed further investigations as my symptoms had come on so quickly & to chase the endocrinologists so I'm gonna call my GP tomorrow & ask her to refer me to this gastro as my current gastros are useless (I have the "luxury" of being slap bang in the middle of two hospitals so do get a semi choice of consultants I.e 2 choices) and also ask her to chase the endocrinologist appointment. I'm at the point now where my swollen neck is making me gag constantly & my hump has become painful. I'm also still struggling with shortness of breath & chest pain & I think I read somewhere (can't be sure as read so much of late that I forget what I have or haven't read lol!) that Cushing's can cause tumours in the lungs which are next to impossible to find? I've had chest x Ray (normal) but still struggle to breath & in pain. But that may all be to do with my heart? Who knows! Seeing cardiologist on Tuesday & hopefully they'll hook me up to a 24 hour monitor & see what's going on... Never rains..

      But you give me hope, you've had Cushing's about the same amount of time I've had crohns & if someone had said to me 30 years ago I'd still be here (and with two beautiful daughters) I would have laughed at them! Let's hope I can say the same in another 30 years xxxxx 

  • vicky61456
    vicky61456 Hollaka79

    Posted

    WOW you really have been through the mill.  The trouble is that each consultant specialises in one condition and with someone as complicated as you the consultants are going to have to work together to sort you out.  I think that you are finally on the way to getting a diagnosis so keep on being as brave as you are.  Let us know what happens.

     

    • Hollaka79
      Hollaka79 vicky61456

      Posted

      Thank you Vicky. It's non stop at the moment. Just want to feel better. Will keep you posted after the cardiologist on Tuesday xxx

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