Fortunately or unfortunately – I am not sure where to file this one – it does not appear I have Cushing’s at the moment. What I do have is an unusual collection of symptoms and images that, yet again, no one really seems to know what to do with.
Here is what I do know.
The latest imaging of my MRI shows what was called either a new pituitary tumor “beneath the sella” (which means below the bony little cup the pituitary gland sits in) or post-operative changes. The “thing,” whatever it is, is not small – if a tumor, it is almost the size of what is left of my entire pituitary gland. I have consulted the Wizard and he sees what the radiologist is looking at but doesn’t think it is a pituitary tumor. Radiology disagrees and thinks it is a tumor. It’s sort of an odd place for a pituitary tumor. But at the same time, if it is not a pituitary tumor, why would I be getting these postoperative changes now, four years after surgery, when my MRI has been completely stable until now? Nobody knows. The plan at the moment, locally, is to redo the MRI in another three months and see what’s in there. I have other ideas of scans we could do to try and sort out whether this is a tumor or not while we wait, but I am also trying to pick my battles carefully with the insurance company and my doctors and so am going to just try and be patient for now.
The MRI and the “feeling like garbage” led to the battery of tests I spent most of May working my way through. It looked like an early scene from “Breaking Bad” in our bathroom. I have collected more saliva, blood, and urine than the Russian Olympic team this month. And all my tests were negative too – maybe we use the same equipment? My pituitary function looks much the way it has for the last few years. I was a little hypothyroid, but fixing that has not changed any of my symptoms. And besides some minor irregularities in my labs (my ALP is starting to climb again, which was the first lab to climb out of the normal range last time) nothing is really showing up in the test results.
In the meantime, I have developed wicked hypertension again, despite already being on BP medication. My seizures have only been controlled with higher and higher doses of medication. I am completely exhausted. Some days, I feel feverish and have pain in my bones and muscles like you do when you get the flu. I have also started to develop some pain in the left side of my abdomen. If you press on the “right” spot, wow does it hurt. But so far, none of my labs are screaming “SPLEEN!” or “PANCREAS!” or “STOMACH!” or anything else that would point us in a clear direction. I am scheduled for a CT scan next week to get a better look. The symptom of the week, no word of a lie, is dizzy spells that are provoked by simply moving my eyeballs from side to side. I am getting reluctant to even bring some of this stuff up because of what might get written in my chart.
Slowly but surely, we are starting to look into these new symptoms as they arise. I am a little suspicious some of my issues might be autoimmune in nature, so while I wait for appointments and results to come back, I have started following the Autoimmune Protocol to see if there is anything in my diet that could be the cause of some of these issues (if you Google Autoimmune Protocol and don’t whisper “Christ Almighty” after finding out what you can – and can’t – eat on this thing, you are a better person than me).
I am meditating, trying to enjoy spring, sitting/napping outside in the nice weather, having a positive attitude, making the most of the day, all those good things. Most days, I know all of this helps. I am still having some bad days and down moments but it really is amazing how changing your perspective can change your experience. So that is what I am going to try and keep doing.
7 thoughts on “Zen and the Art of Lab Tests”
Can you email me? I had cushing’s too and now seem to be either having a reoccurrence or a loss in pituitary function. Maybe we can compare notes? Our symptoms are almost identical.
Absolutely. Maybe between the two of us we can figure something out. I definitely don’t have a Cushing’s reoccurrence and continue to get much worse (I will update my blog shortly, just been too sick to do it for the most part).
I am so relieved to see your Oct 11 note. I’m sorry to hear things are deteriorating, but with such a long space with no post I was beginning to fear even worse. I have been having wierd issues for 4 years and some symptoms stretching back nearly 10-15. Many of my symptoms match your “Round 2” journey, which gave me a place to start looking. I found your blog last year and have been silently following, and honestly it convinced me to push until I found a doctor who would start tests. Thank you for inspiring that. As is typical of Canadian health care, the whole process is ridiculously slow. Right now, it’s impossible to even find a family doctor (PCP) for continuity of care, and many of them don’t see a problem or pat me on the head and say “early menopause”… which should not have started at 34! Even that should have raised some flags. So I am keeping a big file and as you have said, being my own coordinator and advocate. I know your journey ahead is still likely full of obstacles but I am rooting for you and hope you find not just answers buy also solutions.
I am still here! Just been too tired to post. I will try and update soon. I am so sorry it has been a struggle for you as well. I think when we are healthy we believe if you get sick, the problem will be discovered overnight and you will be promptly whisked off to treatment. Sometimes it works that way; all too often it doesn’t as you know from your own experiences. I hear you about the Canadian healthcare system. I grew up in Canada and have seen the best and worst of both the Canadian and US systems. But I do remember the terrible wait times and the lack of an ability to see PCPs (much less specialists) in any sort of a reasonable timespan. I really feel for you. But you aren’t alone. There are a lot of us out here and we are rooting for you too.
Are you still there? I found your site through my own struggle to identify strange health occurrences, and your journey still rests heavily on my mind. I hope all is as well as it can be. Peace and joy be with you in the small moments of every day.
Are you still there? It has been a year, so I fear the worst…
I am still here! I really am planning to start blogging again when the time is right. I am doing okay. I read this article today and it really resonated with me so I thought I would share it with you. Thanks for checking in on me 🙂