Comments for An adventure in Cushing's and stroke http://blog.slight-hiccup.com Jen's story Wed, 22 Feb 2012 22:38:57 +0000 hourly 1 http://wordpress.com/ Comment on The Cushing’s by minavilly http://blog.slight-hiccup.com/the-ugly-disease/#comment-713 Wed, 22 Feb 2012 22:38:57 +0000 http://blog.slight-hiccup.com/?page_id=41#comment-713 Thanks. I’m glad we both beat the odds.

]]> Comment on The Cushing’s by jennnigan http://blog.slight-hiccup.com/the-ugly-disease/#comment-710 Tue, 21 Feb 2012 21:42:29 +0000 http://blog.slight-hiccup.com/?page_id=41#comment-710 Wow, minavilly, that’s an incredible story! I love hearing about weird medical stories – glad you’re okay.

]]> Comment on The Cushing’s by minavilly http://blog.slight-hiccup.com/the-ugly-disease/#comment-709 Tue, 21 Feb 2012 19:37:10 +0000 http://blog.slight-hiccup.com/?page_id=41#comment-709 I forgot to say they took out the whole right adrenal gland since it had taken over the thing and was the size of a golf ball.

]]> Comment on The Cushing’s by minavilly http://blog.slight-hiccup.com/the-ugly-disease/#comment-708 Tue, 21 Feb 2012 19:35:55 +0000 http://blog.slight-hiccup.com/?page_id=41#comment-708 While I don’t have Cushing’s, I do have Neurofibromatosis, a genetic neurological disorder that can be very nasty too. For 21 years we though I had a “mild” case. I has the freckling on my neck, under my arms, and on my groin and plenty of cafe au lait spots (think of a birthmark, except they can get quite large and people can be covered in them). Luckily, non of these spots were on my face. I never developed any of the neurofibromas (tiny tumors on the nerves), at least until recently. Every MRI always came back fine. I had scoliosis, but it wasn’t that bad. I also had migraines which were common in people with NF. Then when I went to get a physical for school in November 2007, the doctor noticed I had high blood pressure. He sent me to the ER. My BP was 200/100. The thought I was on drugs. Luckily, the ER doc took my entire medical history and did some digging on the computer, you could see him from my little trauma room standing at a computer at the nurses station. He though I might have some kind of tumor that was rare for NF patients to get. He sent me to the stroke ward and scheduled at CAT scan for the morning. Sure enough, I had an adrenal tumor called a Pheochromocytoma, a very rare and deadly tumor. I had more testing, but the endocinologist wasn’t convinced it was a pheo and wanted to leave it. I found a surgeon on my own, who said the test the Endocineologist did was inconclusive and sent me for yet another nuclear scan. I also did the love pee in a jug for 48 hours, only this was the second time I did it since they didn’t perform the right test in the hospital. My results were off the charts. I had, as you put it, a textbook case. I think the only symptom I didn’t have was flushing. Palpitations, severe migraines with nausea and vomiting, constant sweating, a voracious appetite (at times), anxiety. It was all there, and for years my doctors had missed it, treating the symptoms and not the cause. I had it removed in May 2008 after my first semester at Uni (I had just graduated from a two year college when diagnosed). I figured if it hadn’t killed me in the last 8 – 10 years, it wasn’t going to. Thought I’d share my story.

]]> Comment on Photos: The stroke by minavilly http://blog.slight-hiccup.com/photos-after-the-stroke/#comment-707 Tue, 21 Feb 2012 19:16:58 +0000 http://blog.slight-hiccup.com/?page_id=111#comment-707 Wow! I only spent a few days in the stroke ward as a precaution the last week of November/first week of December 2007. I was lucky they were able to bring my blood pressure down. The nurses were very surprised that I was only 21. My roommate was 101. So we had the youngest and oldest patients in the same room. My mom and I suspect that before my little trip I had a stroke in the middle of the night during one of my record breaking migraines. One side of my body was completely numb. But I doubt we’d ever prove if it was or not. I’m glad you recovered and are doing well now.

]]> Comment on Back in time (the stroke) by Emer Grey http://blog.slight-hiccup.com/2012/01/29/back-in-time-the-stroke/#comment-694 Thu, 09 Feb 2012 22:10:30 +0000 http://blog.slight-hiccup.com/?p=541#comment-694 Ah, that’s awesome! I saw you hadn’t mentioned any thyroidy things recently so I hoped that was the case! I just feel a strange affinity for anyone who’s been on propranolol.

Haha, thanks. I pretty much decided I had to start a blog mainly because I thought of the name and decided that it was a pun that needed to be made public!

]]> Comment on Back in time (the stroke) by jennnigan http://blog.slight-hiccup.com/2012/01/29/back-in-time-the-stroke/#comment-693 Thu, 09 Feb 2012 21:08:51 +0000 http://blog.slight-hiccup.com/?p=541#comment-693 Hi! Thanks for your comment, it’s interesting – and I’m sorry you’re going through all of this! My thyroid issues all sorted themselves out in the end. I think it was that nothing in my body was really working properly and everything was in shock after the Cushing’s, surgery and stroke. I was on medication for the thyroid briefly, but that was all that happened. It was resolved in the end without any further intervention, for which I am grateful!

Love the name of your blog ;)

]]> Comment on Back in time (the stroke) by Emer Grey http://blog.slight-hiccup.com/2012/01/29/back-in-time-the-stroke/#comment-691 Thu, 09 Feb 2012 15:48:52 +0000 http://blog.slight-hiccup.com/?p=541#comment-691 Hiya! I’ve just found your blog, it’s awesome. And you have had a seriously tough time of things; I’ve been reading your posts in a totally unchronological way, but I really hope you’re doing well at the moment.
I also have a pituitary tumour, mine produces thyroid-stimulating hormone rather than ACTH though. Basically like Graves Disease it gives me the symptoms of hyperthyroidism but it’s a lot harder to treat (darn it!)

Anyway, the reason I’m commenting is that I wondered if your endocrinologist had double-checked to see whether there’s any possibility that your pituitary tumour might be the cause of your hyperthyroidism, rather than Graves Disease? It’s unlikely, I’ve never heard of a tumour secreting ACTH as well as TSH, but my endo has repeatedly told me that they believe tumours such as mine may be massively underdiagnosed because they’re almost always mistaken for Graves Disease, and as you already know you’ve had a pituitary tumour, it might be worth checking it out. It took me a really long time to get diagnosed because my TSH levels on bloodwork were normal or even lowish, it was only when they looked at my T3 and T4 that they realised something was weird with my thyroid!

Anyway, I hope I haven’t worried you, I know from your posts that you seem to be really healthy now. But I’m all about raising awareness and I couldn’t read about a pituitary tumour sufferer having any kind of hyperthyroid issues without getting in touch! If you’re interested, you can read more about the kind of pituitary adenoma I have (TSH-oma) at my blog http://www.pituitaryademoaner.blogspot.com

I feel like I’m going around spreading waves of paranoia around the net now… sorry! Best wishes for your continued good health :)

Emer

]]> Comment on Continuing fitness by Michael Durrant http://blog.slight-hiccup.com/2012/01/22/continuing-fitness/#comment-681 Wed, 01 Feb 2012 20:54:46 +0000 http://blog.slight-hiccup.com/?p=535#comment-681 So we’ll see you at the mothers day classic 8 k race from the domain then Jenny

]]> Comment on On moments by Maria http://blog.slight-hiccup.com/2011/12/01/on-moments/#comment-675 Sun, 29 Jan 2012 09:17:42 +0000 http://blog.slight-hiccup.com/?p=525#comment-675 Hi Jenni,

I read your article about your endocrinologist. Is it possible to have his name?

I would be very grateful.

Good luck with your battle, I have been reading about it and you are an inspiration!

Maria

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