Following my recent appointment with my wise new PCP (hereafter Yoda), I was referred to a doctor that specializes in bone metabolism. This appointment happened to fall between my follow-up with the thoracic surgeon and my next appointment with Gandalf. Now that the surgery was over and I could breathe and talk again, my bones were moving up on the list of priorities so the timing seemed perfect. I had enjoyed a nice break from bone pain while I was on heavy painkillers after surgery and now that I didn’t need drugs for surgery recovery anymore, the back pain had returned with a vengeance. I was ready to check this bone shit off my medical to do list.
M and I went into the appointment armed with a list of questions, my bone labs from the past year and the pictures from my MRI (I had already given Yoda the CD). M and I first spent a long time with the bone doctor’s fellow, who documented all of the crap that had been going on over the last couple of years – Cushing’s, the carcinoid, the bone pain and labs and the whole pile of other symptoms that were as of yet unaccounted for. She was great. We had seen A LOT of fellows over the past couple of years and she stands out as the one that did a lot of listening and asking questions as opposed to telling me how my symptoms didn’t fit Cushing’s or didn’t fit carcinoid or whatever other diagnosis was on the table. I am going to bet money that she is going to be the kind of doctor that is looking to figure out what is wrong instead of just focusing on what isn’t wrong once she is done with her training as well.
We really liked the bone doctor too. I don’t know if it is the fact that I now have a paper trail and some “street cred” at this hospital (between Yoda and Gandalf and the surgery) or if I am just on a roll now but the bone doctor seems really great too. The Wizard, Gandalf, Yoda, now this guy. I feel like when I see a doctor lately, I am not being treated like a crazy hypochondriac or a woman in her 40s with unrealistic expectations about what getting older feels like. He tells me he already received a detailed note from Yoda. He reviews my history with me and agrees there have been a lot of major endocrine problems. He confirms with me that the NIH concluded I did not have MEN-1 and he tells me he is very glad to hear that (I am not convinced MEN-1 is off the table, obviously, but I keep my mouth shut about it). He sees all the labs and agrees there is a problem. He and the fellow even agree my calcium is too high. It is not crazy high, but too high for my age. We go to look at the MRI but it isn’t uploaded in the system, so I show him the same image I showed Yoda:
When he sees the images he simply says “Wow. Wow. Wow.” then passes my iPhone to the fellow and says “You need to see this.”
He confirms that there are masses in my spine. He tells us the good news is that the sacrum is a large bone and this means it may be possible to remove them surgically. He believes this could be the cause of both my high calcium, my high bone turnover labs and my pain. When he says to me, after looking at the pictures “No wonder you are in pain – this has to hurt” I start bawling all over again (I do a lot of this these days). Yes! The pain was BAD. I had been trying to tell doctors this for months and months and months and with the exception of the Wizard all I kept hearing is “well, you are getting older/it is probably arthritis/you are just getting deconditioned” and all this other dismissive shit. I KNEW this pain wasn’t just getting older. This pain was BAD and it was every fucking night. I couldn’t roll over in bed or get in and out of a chair or bed without pain. It was such a relief to have someone just validate what I had been feeling all these months that I cried. I am not crazy. I am not a baby. I have been hurting. The pain is REAL and it has a real cause too. I felt like the bone doctor just told me he was going to let me out of prison after being trapped in a shitty cell for the last year. If you don’t think it is a relief to have a specialist confirm you have painful tumors in your spine, then you need to try and live in my piece of shit body for a year first. I think there is a good chance you might change your mind.
The bone doctor subsequently orders a large set of labs (parathyroid, calcium, Vitamin D and a few others I had never seen before) and new imaging (an X-ray and a bone scan). The labs and X-ray I complete that day. He tells me he wants to see me back soon and he gives me a note for his staff to double book me for an urgent appointment in two weeks – just enough time to get the results back. I don’t know the results of the X-ray, but I do know that nuclear medicine called me a week ago to change the bone scan to an Octreoscan (in case you forgot, this is a special scan designed to locate neuroendocrine tumors). I am not sure if it is because he has talked to Gandalf and is therefore coordinating with him (Gandalf wants an Octreoscan too) or if it is because I had a recent bone scan (ordered by the Wizard a couple of months ago) or if there is some other reason. He has given me some recommendations for medications and other treatments to help manage my pain (one of which is to simply take something that knocks me out so I am unaware of the pain at night) and they are helping.
And the labs have come back now as well. The lab results are extremely interesting along two dimensions. First, my bone turnover is starting to get better. I don’t know exactly why this is the case, but there are a few explanations. One is that the Wizard has been progressively dropping my thyroid meds in our little experiment so maybe being hypothyroid has slowed the bone turnover to some extent. Another very interesting finding from my ongoing research is that excess histamine causes high bone turnover! Histamine! I never would have guessed this one in a million years. Is it possible that the excess histamine I was obviously suffering from pre-thymectomy was at least partially responsible for my bone labs as well? Now that the thymus is out and the excess histamine is clearly gone (I haven’t touched an anti-histamine in weeks), is it possible my bone turnover has slowed down as a result? It will never cease to amaze me how excess hormones can mess up your body in the most unexpected ways. I am very curious to ask the bone doctor about this at our follow-up appointment.
The more interesting finding in the labs ordered by the bone doctor is that my parathyroid hormone (PTH) TRIPLED since it was last measured in April. My calcium stayed high and now my PTH tripled. I just can’t get over this. High calcium and high PTH together are the basis for a diagnosis of…..HYPERPARATHYROIDISM. That’s parathyroid tumors, exactly what I had been let into the NIH study for way back in January. January! It had been ruled out then and subsequently put on the back burner by me when the carcinoid syndrome became severe throughout the winter. But in my mind, parathyroid tumors had not ever been ruled out. My Vitamin D 1,25 was also high, which can also be a sign of hyperparathyroidism.
So what did all of this mean? I would have to see what the bone doctor, the Wizard and Gandalf had to say about all of this. But I did know this: an official clinical diagnosis of MEN-1 was based on the presence of tumors in TWO of the three “P’s” (pituitary, parathyroid, and pancreas). I had confirmed pituitary tumors. If I had parathyroid tumors – which were diagnosed by the presence of high calcium and high PTH – then I would automatically be diagnosed with MEN-1. Neuroendocrine tumors in the thymus and other locations (like what I believe we had already just taken out not even a month ago) are part of MEN-1, but are not diagnostic for MEN-1. But parathyroid tumors would complete the diagnosis.
Would my new labs be enough to confirm hyperparathyroidism? Would they at least raise the suspicion for MEN-1? Would I finally get a diagnosis and therefore start getting followed and screened for this disease without having to fight tooth and nail for every test? And what was the conclusion going to be about my bones? What exactly are these masses? Are they metastases from neuroendocrine cancer in my thymus? From another location? Are they “brown tumors” from hyperparathyroidism? Are they a sign of some other problem that isn’t even on my radar yet? And what can be done about it?
As I begin telling those close to me about all of these results, I quickly realize that this news is upsetting to people. People are worried and upset there are signs of more tumors, new tumors, etc. And while I can understand the news is upsetting to everyone else, and of course it is concerning to me too, I can honestly say this is the happiest I have felt in a long time and the reason is simple: I ALREADY KNEW I WAS STILL SICK. I have been living with a pile of problems – problems from Cushing’s, problems after Cushing’s. I am in pain and wiped out all the time. I know some people look at me and think I don’t look sick anymore (although I certainly don’t look like myself, that much is clear) and they wonder why I don’t go back to work or speculate amongst themselves that I am just soaking this whole “being sick” thing. Trust me. Spending half your day in bed every day, not working, being in pain, not being able to do a fraction of the stuff I used to be able to do is no life. I don’t want to live this way! But I can see it in their eyes and hear it in their questions. People think they are being very subtle, but I am not stupid, I can read between the lines and it makes me so fucking angry sometimes. At the same time, I know/feel like I have recovered from some of my medical issues, but I never felt that I had recovered. Not even close. I have been sitting here dealing with the knowledge that I am still sick and had been struggling like hell to figure out what else is wrong and how to get it fixed for a long time. Now, I can pass some of this worry and fight over to a set of doctors who I actually believe can help me. This is all good news. The more abnormal results come in, the faster this is going to get figured out and fixed.
I am finally starting to feel a little optimistic again. Finally, things were starting to fall into place. This was going to get sorted out. I was going to get treatment. I was going to get better. Maybe not in the next month or six months, but there might actually be a day in the next year when all of this shit was going to get surgically removed and/or treated. Maybe I was actually going to be healthy again. I am a bit scared to think about that possibility too much yet. But it was hard not to get my hopes up about it a little bit.