Medical update

I met with my endocrinologist yesterday, who is gruff and kind of blaming and likes to remind me of how irritable and hyper I am on the steroids. My thyroid is becoming out of control, likely as a result of the CT scan, and I will need to have thyroid surgery relatively quickly. There are additional risks to the surgery now because my thyroid is out of control, but I do not feel that we can wait because the thyroid being out of control can itself be life-threatening. We are going to wait to see what my labs from yesterday are before making a decision about timing, but it is likely I will have surgery in the next week to ten days.

My endocrinologist continues to believe, along with Pulmonologist #2, that Pulmonologist #1 is wrong about the diagnosis (diffuse alveolar hemorrhage), the etiology (allergic reaction to thyroid medication) and the treatment (surge doses of steroids for three months). The endo says that people with diffuse alveolar hemorrhage (bleeding from the lungs) are very, very sick and usually are dying, and that because I have never been sick or even really symptomatic at any point in this process, that I do not fit that bill. She says it is not consistent with a diffuse alveolar hemorrhage to have completely normal labs, including measures of inflammation and pulmonary function. She also says that she has never seen this reaction with my thyroid drug and that she does not believe the drug caused the reaction. She said that she tends to agree with Pulmonologist #2 that I am not allergic to the thyroid drug and that I should in fact go back on it in preparation for surgery to try to bring my thyroid back to a stable level before undergoing general anesthesia. She makes the point that Pulmonologist #2 's suggestion that I go back on the medication means that he is certain that it is not the drug that caused the bleeding, because it it is safer legally for him to recommend I just continue with my existing course of treatment. He would not even need to see me again, because he does not believe I have any pulmonary problems. He would have my endo wean me off the steroids rather quickly after the surgery (after, not before, because the steroids may be having a suppressive effect on my thyroid now, which is therapeutic).

It is very difficult for us to understand how two people could have such diametrically opposed clinical opinions. It is also hard to understand why they can't pick up the phone and speak to one another like normal people in normal professions. Jeff and I would like to watch them duke it out and see how it turns out. My endo said my case is the most troubling of her career because of the two disparate opinions and resulting disparate recommendations for treatment.

At this point I feel I have one reasonably good option, which is to go ahead with the surgery as soon as it is safe to do so, and to take whatever measures (including continuing the steroids and restarting my thyroid medication) necessary to bring down my surgical and anesthesia risks. It is too scary to go into the surgery with no thyroid suppressing drugs, and, most importantly, even if Pulmonologist #1 is right and I am allergic to the thyroid drug, and I was unlucky enough to have another reaction in the short time between now and when I had surgery, the steroids I am on would likely counteract, at least partially, any reaction I might have to the drug.

Generally people don't have surgery to remove the thyroid when they have Graves disease like I do, because most people can do radioactive ablation, which entails taking a radioactive iodine pill which binds to the thyroid gland and kills it. It's not an option for me now because the radioactive iodine I received intravenously for the CT scan is still uptaked in my thyroid and so the pill will not bind, and I probably can't wait the month or two or three it will take for that iodine to get eaten by my thyroid so that I could then do the pill. A pill is super easy and tempting, but the truth is, I wasn't probably going to do the pill even when I could have. I had already been planning to have the surgery after I was done breastfeeding the boys because the idea of the irradiation creeps me out. When you do that, you can't even be around your kids or family for several days, you have to flush the toilet like three times after you use it and use different cups and silverware, and generally speaking, you're freaking radioactive, for several days or weeks. Plus there's a lifetime increase in cancer risk. That is creepy and I'm not down. Look, I'm no fan of general anesthesia or surgery or hospitalization or IVs or any of that, but I get it--my thyroid is the problem, and they're going to physically take it out. That makes sense to me. I will have to be on synthetic thyroid for the rest of my life but, and this is key, it is simply a synthetic version of what one's body normally makes, so there is basically no risk of side effects or allergic reactions or anything else. It's like taking vitamin supplements. Whereas steroids or antibiotics or my current anti-thyroid medication is acting systemically, not mimicking an already present hormone or chemical in my body. That makes sense to me too, and I'm totally cool with that.

The crazy thing is that if Pulmonologist #2 is right, the source of the bleeding was not in my lungs but rather somewhere in my throat or upper respiratory tract from some unknown but unserious cause, and if I had not gone to the hospital that night, it would have resolved itself with no treatment whatsoever and I would be on my happy way right now. NOT going to the hospital would have been the right thing to do. (Or going to a good hospital--but that's another story.) The endo explained it yesterday as how sometimes you get a bloody nose, and you don't know why you have it, but it bleeds a bunch and then goes away and is nothing to worry about. She says that could have happened somewhere in my upper respiratory tract and drained down my throat into my lungs without me knowing and without any serious cause, and the lungs would have absorbed the blood and all would be fine. That seems crazy to me, honestly, but so does getting an allergic reaction to a drug I have taken on and off for 10 years.

It appears now that another test could have been done in the hospital to determine whether I had a pulmonary embolism, which was the impetus behind the CT scan. Obviously, that other test is the one that should have been done. My endo is still mad, at least partly at me, that I agreed to have the CT scan (because of the consequences on my thyroid), but I have to say that in the moment, I was afraid I had a PE and the ER doc said that the CT scan was my only option. He may have been wrong but he was the only doctor I saw at the hospital that night. I thought I was at a serious risk of dying from a PE while I waited for another opinion or test or doctor, and so I elected to have the CT scan. No one at the hospital ever, in three days, discussed any implications for my thyroid with any of the testing or treatment. Lesson learned: I will not go to Community General Hospital again on purpose, for anything. This might have happened somewhere else but I think it was a bad idea to have gone there in the first place.

Bottom line is: I'm on a relatively low dose of betablockers now around the clock to control the symptoms of my hyperthyroid (hot, sweaty, high heart rate), plus the high dose of steroids, plus the antibiotic to prevent some kind of steroid side effect, plus vitamin D because the steroids zap my vitamin D. I will hear back from my endo by the end of the week with my lab results from yesterday, at which point we will make a plan for surgery. Within a week or ten days of when the surgery is scheduled I may begin taking my thyroid medication again to try to bring the thyroid under control to make the surgery safer. More later this week or early next week....