Hey cushies

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Hey Cushie friends

Guess who just got out of the hospital (again!) After my Er visit I was told to go back on Tuesday for that cardio review (as I'm sure you remember my HR was 157 & they hooked me up to heart monitors). So I went in expecting to have an appointment with a cardiologist at 10am Tuesday, next thing I know I'm being admitted as pulse too quick again! Ugh! Spent 3 days in, cardiologists did echo (normal) and 24 tape (showed constant tachycardia). Basically my heart beats around 130 all the time! Cardios then decided it was all Cushing's related so wanted the endios to come see me. They ordered another overnight suppression test which again came back positive for Cushing's but are saying it's steroid related. Now my gastroenterologist doesn't think it is as it's come on too quickly?! So they decided to discharge me on basis I see endocrinologist & gastroenterologist as an outpatient asap & started me on dilatzeam (heart rate reducers) which have brought my hr down to about 115 so slightly better (yet I'm still out of breath & pain in chest). 

I have these new swellings on my collar bone & the swelling on my neck is now making me gag that I can't lay down properly? Does any of my lovely support ladies (and men but think you're all ladies - correct me if I'm wrong), suffer with this gagging feeling, like someone's choking me constantly? It's making it really hard to sleep & im also kinda grunting & snoring really badly (which wakes me up - thank goodness I'm single lol!) .

Finally, on a slightly different topic a friend of mine contacted me recently seeing me going through all my struggles and she mentioned something called pheocrhomcytoma? It's similar to Cushing's & again really hard to pick up. So anybody struggling out there may be worth mentioning to their dr. I'm gonna mention it to the endio when I see them, and ask for a scan just to make sure that it is steroid related & not a adrenal issue... 

Another long rant for a Sunday night, apologies as I write like I talk!!! 😂😂😂 

Hope everyone's had a lovely symptom free weekend xxxx 

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  • Posted

    Hollaka

    Have yourself tested for sleep apnea as i think you need a sleep apnea machine as you are not getting REM sleep and not enough oxygen to your brain while you sleep. I know this situation you are facing is overwhelming, im praying they are going to get this figured out ASAP..keep us posted

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    • Posted

      Thank u cycliccushings. My dad has a machine & it's changed his whole life. My issue is the swollen neck & face, I have to keep my head tilted back otherwise it makes me gag as so swollen it's like someone's constantly got their hands around my throat.  I'm seeing my gp on the 10th oct so will ask her about the sleep apnea but no doubt they'll just blame the steroids lol... one day I'll be sorted xxxx 

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  • Posted

    Hollaka if your Cushings is from steroids you should have had an abnormally low result of cortisol after dexamethasone that's what they used to use to differentiate between Cushings and steriod induced Cushings though they are finding dex tests unreliable now . If you didn't suppress after dexamethasone I would be wondering if it is just steroid induced for sure . I was tested for pheochromocytoma that what I thought it was at first but came back fine . You have so much going on with your medication it's a tricky one x lots of love hope this helps 

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    • Posted

      Thank you, I didn't suppress on either of my dexamethasone tests. First test was done on correct timings & cortisol was nearly 200, then last week they didn't get the bloods done in time but still nearly 100. The endocrinologists have said they want to see me now (instead of previously saying they'd wait til I'm off steroids) and my gastro doesn't think it is the steroids as it's been so quick of a Deterioration. My 24 hour urine cortisol was 1150 so again pretty high. 

      Saw a rheumatologist today who said he thinks it's all steroid related but I'm just worried they're just "assuming" it's that without investigating for sure (like my GP & gastro recommended they do) as that's the easy option.  

      My periods have stopped now for 3 months but still getting the pre symptoms so migraines cramps etc but no periods. And this whole swollen neck & face thing is becoming too much. I won't go anywhere now where I may bump into someone I know as I look like the honey monster 😞 Ugh enough already... 

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