After coming home without a diagnosis from the NIH (yet – I am still waiting on the genetic test which may or may not shed light on my situation), I decided to take the new information I had and get some local consults. I also planned to discuss the NIH findings with the Wizard to hear his thoughts on where to proceed from here.
My cardiologist gave me the name of a trusted thoracic surgeon, so I set up a consult with him to discuss the Octreoscan findings. My GP recommended a pulmonologist and a GI doctor specializing in the liver to follow up regarding nodules found in my lungs and liver, respectively, so I set up these consults as well. I also decided to get a local parathyroid consult and, given my substantial mistrust of local endocrine doctors after my multiple failed attempts to get diagnosed with Cushing’s locally last year, two parathyroid consults for surgeons in other parts of the country that came highly recommended by other patients.
The Wizard and I mainly talked about my thyroid labs. He does not think my bones are being destroyed because my T3 and T4 are too high and neither do I. However, we were going to try some experiments with my thyroid meds to see if switching to a different combination of drugs caused my TSH to return to normal. Stay tuned. He ordered some additional tests, including a bone-specific Alkaline Phosphatase and that came back at almost double the upper limit of normal which confirmed a problem with my bones. He thinks my breathing problems are likely due to asthma and recommends I follow up with a local doctor about this, which was already in the works (even though I do have doubts about the asthma). I asked him about the possibility that I have a somatostatinoma and he thought that was too rare and didn’t order the somatostatin test. However, given I was having digestive issues, he also ordered a glucagon test (glucagon is another pancreatic hormone that can also cause digestive distress to put it delicately). If my glucagon was elevated, it could indicate a different kind of pancreatic neuroendocrine tumor, a glucagonoma. So many pancreatic tumors, so little time.
The thoracic surgeon looked at the CT scan with me and we had a good conversation. He said he was going to reach out to my cardiologist and the local parathyroid surgeon I was seeing in a few days to get everything coordinated for me. He was also going to sit down with a radiologist and go through the Octreoscan with him and then call me back. He wasn’t accustomed to looking at Octreoscans and wanted to make sure he knew what he was looking at. It is not clear whether he actually did any of these things, as he never called me back, but he sounded like someone who was at least taking me somewhat seriously. At some point, he told me that I really should have someone coordinating all my care but when I asked him who this magical someone was supposed to be, he didn’t really have an answer. I told him that until it was clear what I had, it wasn’t obvious who should be overseeing my care, so for now “someone” was me and he ended up agreeing. Whether he was agreeing to be nice or really agreeing is anyone’s guess.
The parathyroid surgical consults were a real mixed bag. The local consult was, in a word, horrendous, and inspired my earlier post about monkeys. The other two surgeons recommended further testing and I am working my way through those tests now and will report back on this progress (or lack thereof) soon.
I liked the pulmonologist as well. He wasn’t too concerned about my breathing issues (which were admittedly very mild when I saw him in the first week of February and frankly I wasn’t very concerned either) but he did order pulmonary function testing, a cardio-thoracic ultrasound and a follow-up appointment a month down the road. The ultrasound came back normal. However, to my surprise, the pulmonary function test did not come back normal. My lung function, along some dimensions, was 45% of what was predicted for someone my age. And this test was administered on a day I felt asymptomatic…. Some of my lung function improved after taking an Albuterol inhaler, but the results were still not normal. These findings indicated obstructive lung disease, which would be consistent with asthma, COPD, bronchitis…or a tumor. I have had asthma since birth and my breathing problems didn’t “feel” like asthma, but both my GP and the Wizard thought this was the more likely cause of my symptoms. My GP also pointed out that this could be one reason I felt so exhausted all of the time.
Since completing the pulmonary function tests, my breathing has become much worse and I have started coughing quite a bit. It feels like there is a something irritating my bronchial tube. And the coughing, in turn, makes me wheeze. If I sit still, I am fine. While I sleep, I am fine (which for me is unusual for asthma – generally asthma would wake me up in the middle of the night). But if I talk or move around, I start coughing and then wheezing. Some blood pressure medications can cause coughing and I started a new one a few weeks back that lists coughing as a potential side effect. I checked in with my cardiologist and he agreed we should stop this medication and try another one, which I have done. But I still have the cough.
The breathing trouble has affected my mood a lot. I was already in a lot of pain at night from whatever is happening to my bones. I have been extremely fatigued for months, so fatigued that I still really only leave the house for doctor appointments for the most part. But at least I could have a conversation or putter around the house a bit. The coughing really messed with what little freedom I had left. I have been feeling like I am living in a tiny box for months and the coughing made the box so much smaller. I was in a little box with when I had Cushing’s too, but somehow it was easier then because my brain was fried as well. I couldn’t do anything with Cushing’s but it was more bearable because I was in a daze – I had such bad brain fog that I didn’t want to do anything. Now, that I am alert and my brain is working again, I want to do things but I can’t. And most days that really sucks.
The other torture in all this is that I keep going back and forth in my mind between “why are you making a big deal of this? It probably IS asthma” and “you know this isn’t asthma, it doesn’t feel anything like asthma. You aren’t waking up at night wheezing and the feeling in your chest and your cough is nothing like anything you ever had because of asthma in the past. It’s a tumor! I know it!” The mental anguish I am feeling has been tough to deal with. Either I am worried over nothing or there is a tumor growing in my chest and I am ignoring it. I want to believe it is just asthma, but why would I be getting a flare-up now? And what about the Octreoscan? Neuroendocrine tumors in the bronchial tubes or thymus can causing coughing and wheezing too! On the other hand, I AM asthmatic, it has been a really cold winter, who says asthma always affects one person the same way every time you have a flare-up? Or maybe I have turned into a huge hypochondriac? But the pulmonary function tests DID indicate there is a problem and on a day you felt really good! And the internal chatter goes on and on.
I am seeing the pulmonologist later today and I hope he will help calm the chatter one way or the other by running a few more tests. I am not confident that will happen at this juncture and I am worried about getting my hopes up but that is where I am at.