The Gallium-68 scan I had last week was read as clean. This is good news and bad news. The good news is that I am not full of tumors. The bad news is that the scan didn’t locate a single tumor in my thymus or anywhere else either. I know I have said this before, but it is worth saying it again: I am not Jonesing for a tumor. Like any normal person, I would definitely prefer NOT having a tumor. However, I am not a normal healthy person, right now. I am sick. And what I don’t want is to be sick with a tumor, with symptoms and evidence that are very suspicious for a tumor, and not be able to find it and get it removed. Neuroendocrine tumors tend to be very tiny and can be very hard to find. It is not uncommon for patients to be sick for years until the tumors spread or grow big enough that a monkey can find them. Thymic tumors can be highly malignant and deadly as well, partly because they often are not found until they are very large or have spread (in part because they often can’t be detected with labwork). I don’t want to be one of those patients that catches something too late, but my body is not making it easy.
I was really upset about this for one day, and moderately upset about it for a few days after that, but I am over it now. I told myself going into this that no matter what the scan says, it doesn’t change my symptoms, it doesn’t change the hypertensive crisis I had, it doesn’t change my eventual diagnosis. It just helps me figure out what is wrong or it doesn’t. Each test, each doctor visit, each result just gets me closer to figuring this out or it doesn’t. That is all – no more and no less. And all I can do is just keep collecting evidence with the knowledge that there will be some dead ends. Dead ends don’t mean you can stop trying. As The Great One says, you miss 100% of the shots you don’t take. So, I am going to keep shooting pucks at the fucking net until we figure this out.
My somatostatin test, I am told, also came back normal. All I really know is that I had a message from a nurse with the test value and an assurance that the test was fine. I asked repeatedly for the reference range but I didn’t get it. I really hate when medical professionals of any kind do that – why not treat me as an intelligent person and just give me all of the information? It is my blood, my insurance paying for it and my right to have the information! No matter. I will track that down the hard way later and I knew this one was a long shot anyway.
The Wizard ordered a bunch of labs two weeks ago and they are back as well. Those ones are interesting and consistent with what we have been seeing all along. In case you haven’t read each of my posts and committed them to memory, here is a brief summary of what the Wizard and I have been doing. Some of the problematic aspects of my labs are very high bone turnover markers (N-telopeptides and Alkaline Phosphatase, including bone-specific measures) and an extremely low TSH (the pituitary hormone that plays a role in regulating thyroid function). TSH stimulates your thyroid to secrete T4 and T3. T4 needs to be converted to T3 before it can be used by the body to regulate your metabolism. If you are hyperthyroid (i.e., your T3 is too high), your TSH should be very low as your pituitary wants to signal to the thyroid to stop spitting out thyroid hormones. Hyperthyroidism can also cause high bone turnover. So high bone turnover and a low TSH could be a sign of too much thyroid hormones.
Over the past several months we have been trying several experiments whereby I (1) switched from taking thyroid medications that replaced T3 and T4 to medications that only replace T4 and then (2) lowered the dose of medications to replace T4. We did this to see whether the resulting reduction in T3 would cause my bone turnover to cease or bring up my TSH. Well, the outcome of the experiments seem to indicate that even when I am hypothyroid (i.e., I don’t have nearly enough thyroid hormones) as I am now, my bone turnover is still high and my TSH is still abnormally low. I actually feel really bad on the current dose of thyroid meds and my T3 is very low so I hope my days as a guinea pig are over. But, it was worth it as I think we have ruled out thyroid issues as the cause of my bone turnover and I hope the Wizard agrees. Despite the fact I have a lot of bone pain and I am concerned about my bones, this is still pretty low priority for me though given the other things that are going on.
The other interesting finding is that my IGF-1 continues to decline. The last two readings have been so low that they raise the suspicion I am not able to produce enough growth hormone. It is not uncommon for patients that had pituitary surgery to lose their ability to make sufficient pituitary hormones post-op as the surgery itself can permanently damage the gland. Damage to my gland could also be at least partially responsible for my low TSH as well. Growth hormone is a very pulsatile hormone and so measuring it directly is not informative. IGF-1 is a more stable hormone that is stimulated by growth hormone and is often measured as a proxy for growth hormone. There is a specialized set of tests that can be ordered to see whether the pituitary gland, when stimulated appropriately, can produce enough growth hormone. My understanding is the Wizard orders these tests when a patient’s IGF-1 level is below the 25th percentile for their age group. My last two readings were at the 22nd and now the 17th percentile. So, I am going to ask him about exploring this when I talk with him next.
Not having enough growth hormone and not having enough thyroid hormones can each make you feel really bad – they both could definitely be reasons I am so exhausted all of the time and why I can’t seem to lose any of my Cushing’s weight too (illness has not impacted my vanity yet). So, fixing both problems should help with at least some of my symptoms. The carcinoid issues (e.g., flushing, coughing) are still another matter.