I had my endocrinology appointment this afternoon. I've basically been a wreck while waiting for it, because, you know, only my sanity and life rested on it. My body and I have reached our breaking point. I can't live with it for one more second. Freezing cold limbs, socks everywhere, toothpaste squeezed from the middle; I'm looking into legal emancipation from the damn thing.
The doc started off by asking why I was there. In a nutshell, don't feel like I've ever gotten respite from hypothyroid symptoms, even when labs are "normal", sez I. She responds by saying that if the labs were normal, then my symptoms were not due to hypothyroidism. Just exactly what I dreaded hearing. Hmm. So you are saying that the symptoms which were the basis of my initial hypothyroidism diagnosis, a diagnosis backed up by abnormal labs...you are saying these same symptoms in the same body are NOT due to hypothyroidism if the labs aren't abnormal? She said, "yes, that's what I'm saying, but your labs WERE abnormal, so this is a moot discussion."
No, no it's not, because for years I've been a good little patient, eating up the party line that my labs are normal, it can't be hypothyroidism causing my problems. For years I let them tell me the labs were normal, when what they called normal was just barely over the lip of normal. A stiff breeze would have blown my normal results back into wackyland. Except that getting the symptoms treated one by one didn't work AT ALL.
So we have a major pink elephant in the room, hypothyroidism, and the doctor is like "Don't look at the elephant, you have normal labs." Well, frankly, doctor, that's just bad science. It seems more likely to me that there is something you and your labs don't understand about treating hypothyroidism, than that I have just randomly developed seven ailments that happen to match the symptoms of hypothyroidism, but, oh yes, aren't hypothyroidism. But where are my manners - you just said my labs are currently abnormal, so lets get back to that. Please, don't mind the tears running down my face, carry on.
So you are willing to agree that my current symptoms are probably hypothyroid related. My weight gain, fatigue, muscle pain, tendinitis, depression, headaches, low blood pressure, low body temp, low sex drive, currently these are all acceptable hypothyroidism symptoms because my labs agree that I'm actively hypothyroid. And yet, I had all of these symptoms last year too when my labs were normal. They were all moderately better then, but still there. So back then they weren't hypothyroidism, but now they are. And now that my hypothyroidism is actually registering as worse in the labs, the symptoms are all worse too. But that must be a coincidence...perfect symptom overlap.
She asks if can tell her why I'm so upset (apparently the unabated tears were unnerving her). I asked if she wouldn't be upset if she felt like her symptoms were slowly ruining her life, but she wasn't able to get them treated because they were tricky or fell outside of some arbitrary parameters for being taken seriously. I said I didn't understand how she could look at someone with all the symptoms of hypothyroidism clinically, and ethically/morally refuse treatment based on the labs. She said, "Well, how do you know I'm not hypothyroid?" And I said, "I know because you would have so much more sympathy and be willing to look outside the box, to do anything really, to try and solve an awful problem." She sighed, and said "I'm not hypothyroid, but I've treated thousands of cases". Mentally I put air quotes around treated, and thought, well, you asked.
We talked some more during the exam. She zeroed right in on the fact that I'd been treated for depression and see a therapist, it was obvious she thought depression was my main problem, hypothyroidism secondary, and I can see how a patient weeping in your office might be construed that way. But on the other hand, the more compassionate hand, it could also be construed for what it was - the sadness of a drowning patient who is having her hope and lifeline ripped away from her.
I defended myself by pointing out that psychiatrists are now treating refractory depression with thyroid medications, and seeing major success, even though the patients show normal thyroid function. Is it not possible that some functions are particularly sensitive to thyroid levels, and given that "normal" TSH values range from .3 to 3, a full order of magnitude difference across the range, that one person might do better at some point in the normal range, and another person do better at another point etc.
If a person has the symptoms, why not explain the risks in going with a higher dose of T4, or going with T3 supplementation, and give it a shot? If it doesn't help, it doesn't help. The risks of the treatment are not that high, but the risks of remaining untreated are getting pretty close to unbearable to me. It strikes me as so callous and cowardly to huddle behind the lab results and say go elsewhere, rather than accepting that perhaps there are things they don't understand about the system, and working to treat the patient. But like I told her, that's how I know she doesn't have the disease, anyone with the disease would feel differently.
She did eventually agree to give me a minuscule dose of cytomel, a T3 replacement, under the conditions that I come back every month for blood tests and every 6 weeks for appointments. I just don't know if I can consider her a partner in my care when her philosophy is so obviously not patient care based. I don't think trying a new therapy will work if I have an antagonistic relationship with the doctor, so I might be better off going with the other doctor I found who sounds very open and who I talked to in person. He didn't have appts till late Dec. though.
One good thing though, Justin has been helping me keep my spirits up and think about the options positively. I just wish he didn't have to go to work in the morning, it's not the same snuggling his pillow.
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