There are a lot of things going on at once, so I am going to summarize what has happened so far and what is outstanding.
Here are the problems that have been solved:
1. Pituitary tumors causing Cushing’s. I had neurosurgery to remove these in February 2014. So far, no signs of a recurrence. Diagnosed based on symptoms, multiple labs indicating high cortisol and a dynamic MRI indicating the presence of pituitary tumors.
2. Thymic carcinoid. I had thoracic surgery to remove my thymus in June 2015. Diagnosed based on carcinoid syndrome and Octreoscan indicating area in anterior mediastinum suspicious for a neuroendocrine tumor. Some of the symptoms of carcinoid syndrome (i.e., coughing and wheezing) disappeared and others (i.e., flushing) didn’t go away but became less severe. No tumor was identified in pathology.
Here are the remaining problems and where I am in terms of chasing them down.
3. Need to get a second opinion on the pathology from #2 as it has to be wrong. It just doesn’t make sense the Octreoscan lit up in this area and my symptoms got so much better post-op and there was no carcinoid in my thymus. I’m waiting to hear from Gandalf on this, but will come up with a different plan in the event he isn’t able to help me.
4. I still have some signs of carcinoid syndrome and so we need to figure out where the rest of this little bastard is hiding. I am getting an Octreoscan and hopefully something will show up and allow us to form a plan to evict the remaining neuroendocrine tumor(s). I know enough from experience and talking to other patients that the Octreoscan may very well be a dead end, as they don’t pick up all neuroendocrine tumor activity. Not by a long shot. But all I can do is try!
5. I have masses in my sacrum (and I suspect maybe my pelvis too, based on some new pain I have been having over the past six weeks). I have had an x-ray for this (but haven’t seen the results) and the Octreoscan was ordered in part to try and figure out whether these masses are metastasis from the NET in my thymus or something else. Waiting for follow-up with the bone doctor on all the results. My best guess is that a biopsy and/or surgery (or some sort of treatment) will be coming in the relatively near future.
6. My parathyroid labs are elevated. The bone doctor doesn’t think they are a sign of primary hyperparathyroidism (i.e., parathyroid tumors). I disagree. My plan is to keep testing to see whether the upward trend continues.
7. I am still having some malabsorption/digestion issues. This is almost going on a year now. Is it because of the carcinoid? Is it a sign of another tumor in my pancreas or somewhere else? Is it something totally unrelated and benign? At this point, I have no idea, but I am hoping a combination of an endoscopic ultrasound and the Octreoscan will help rule some of these possibilities in or out. Hopefully both sets of tests will happen soon.
8. My IGF-1 (a crude proxy for growth hormone, which is produced by the pituitary gland) keeps dropping. The pituitary hormone TSH has also been suppressed for quite awhile. This might be a sign of hypopituitarism, which is relatively common after pituitary surgery (see #1). I need to get a GH stim test to determine whether the drop in IGF-1 is due to growth hormone deficiency. I am going to see the Wizard this month to get the test and to discuss the state of my pituitary (and all these other issues). It’s also possible that some other hormone is suppressing my IGF-1. But this should be more clear once a growth hormone deficiency is ruled in or out. If I am growth hormone deficient, this could certainly be at least part of the reason I still feel so crappy.
9. I still have very bad bone pain, but this is likely due to #5 and hopefully whatever treatment I get will take care of at least some of this pain as well.
10. I am very fatigued starting in the early afternoon. If I don’t lay down and have a few hours of solid sleep most afternoons, I feel really ill. This is not normal fatigue at all and it doesn’t feel like the same sort of fatigue I had when I had Cushing’s either. I don’t know exactly what is causing this, but some combination of #4-#8 are likely responsible.
11. Are #1-#10 all caused by the same underlying disease process? And does this mean more problems of the same nature are coming? Probably. But it is likely going to take time for these questions to be answered with any precision and for me to therefore get some sort of unifying diagnosis.
This is still a large set of problems. But taking care of #1 and #2 made my life much better and I am optimistic the other problems will be diagnosed and fixed in time as well.