I don’t get it. Why would she need to deal with dozens of people to get meds she clearly needs for a single condition? My heuristics point at her version of the story leaving out something important.
Alternatively you really do have a screwed up health care system in the US.
Why would she need to deal with dozens of people to get meds she clearly needs for a single condition?
Most of these drugs are pretty well-known. Hydrocortisone (or prednisone) is probably the most common and easiest drug, both cheap and commonly prescribed as a general immunosuppressant. The thyroid drugs (probably thyroxine and liothyronine) have a number of on-label uses that could be coherently stretched to cover this particular condition, and are common enough to be in the average pharmacy network. There’ll be some hesitancy to mess with doses heavily—especially after you achieve basic functioning—because of the high risk of adrenal shock, something that the author experienced in at least one high-profile incidence. In women, a combination of estrogen-progesterone therapy is recommended, and not that dissimilar from the Pill except opposite in effect.
But that’s not a dozen drugs, and that’s about the full scale of well-documented treatment. There’s not much literature on the use of testosterone in women, for example, and I can think of a half-dozen neurochemicals she might be pioneering. There are endocrinologists that enjoy working at the frontier of drug discovery. There aren’t a huge number that do so, but have patients that walk on two legs and are known for food preferences other than cheese.
There are also secondary issues. The drug industry has some severe logistics issues, resulting in many drug shortages. One of the most common thyrioxine supplements has been on back-order since, and is scheduled to stay that way til 2014 after a rather goofy recall. This isn’t unique to hormones (although the levothyroxine example is especially ridiculous), but it matters.
That’s true, I missed the sentence about a dozen drugs. Keep in mind though she might not take all of them exclusively for that particular condition.
I can think of a half-dozen neurochemicals she might be pioneering
I would be interested if you named a few, and whether there’s any evidence of their usefulness.
I can think of a half-dozen neurochemicals she might be pioneering.
If that’s the case the question becomes should she really be allowed to do that. I have no problem with that if the system allows for the patient being completely responsible for taking those drugs, but I don’t think any doctor or insurance company should be expected to take the fall for her. If the drug isn’t well documented and she doesn’t take part in a trial, I think she should finance treatment for any complications herself, and that could easily get more expensive than she can afford.
Her complaints are not the usual ones about the American system. What leads you to believe that it would be different elsewhere? The insurance companies add a gatekeeper, but it’s not the only one.
If she complained that the system simply denied her what she wanted, I’d find it quite plausible that there is more to the story. But instead she says that it is a struggle every month. What could be the other side to that story?
Her complaints are not the usual ones about the American system.
I only have a really vague idea of what those are.
What leads you to believe that it would be different elsewhere?
I’m a doctor from Finland, and don’t think she would have similar problems here, if she really needed those hormones. Does something lead you to believe it wouldn’t be different elsewhere?
But instead she says that it is a struggle every month.
That’s what I find weird too. I can’t imagine why that would happen, at least in my country. I’ve never even heard of the kinds of complaints she has.
What could be the other side to that story?
I don’t know, I’m not an endocrinologist. A wild guess amongst many: doctors really do have good reasons to believe she doesn’t need the amounts of hormones that she thinks she does (placebo), or even that they’re harmful. She could for example have a psychiatric diagnosis or lots of previous pointless visits recorded, which would strengthen this suspicion further. She would have to do doctor shopping to get her prescriptions renewed, which would make it a constant struggle.
I also find it weird the diagnosis took years when she had that severe symptoms.
I haven’t had much dealings with the medical profession, but her story didn’t seem wildly implausible to me—I have friends who’ve had a hard time, though not that bad, getting the care they need.
Anyone else care to weigh in on whether her story seemed implausible to them, or plausible but at the low quality medical care end of the spectrum?
From my POV, patients quite commonly have misconceptions about what conditions they have, what lead to their diagnosis, what treatments they’re getting or why and especially why they’re denied treatment. She seems reasonably intelligent and educated, so this is a bit less probable.
low quality medical care end of the spectrum?
By the system I would mean the whole system consisting of communication between doctors and their colleagues and pharmacies, continuity of electronic patient histories, insurances, reimbursements and prescription policies etc. I’m saying that the problem could be in some of those parts, just to be clear.
I don’t get it. Why would she need to deal with dozens of people to get meds she clearly needs for a single condition? My heuristics point at her version of the story leaving out something important.
Alternatively you really do have a screwed up health care system in the US.
Most of these drugs are pretty well-known. Hydrocortisone (or prednisone) is probably the most common and easiest drug, both cheap and commonly prescribed as a general immunosuppressant. The thyroid drugs (probably thyroxine and liothyronine) have a number of on-label uses that could be coherently stretched to cover this particular condition, and are common enough to be in the average pharmacy network. There’ll be some hesitancy to mess with doses heavily—especially after you achieve basic functioning—because of the high risk of adrenal shock, something that the author experienced in at least one high-profile incidence. In women, a combination of estrogen-progesterone therapy is recommended, and not that dissimilar from the Pill except opposite in effect.
But that’s not a dozen drugs, and that’s about the full scale of well-documented treatment. There’s not much literature on the use of testosterone in women, for example, and I can think of a half-dozen neurochemicals she might be pioneering. There are endocrinologists that enjoy working at the frontier of drug discovery. There aren’t a huge number that do so, but have patients that walk on two legs and are known for food preferences other than cheese.
There are also secondary issues. The drug industry has some severe logistics issues, resulting in many drug shortages. One of the most common thyrioxine supplements has been on back-order since, and is scheduled to stay that way til 2014 after a rather goofy recall. This isn’t unique to hormones (although the levothyroxine example is especially ridiculous), but it matters.
That’s true, I missed the sentence about a dozen drugs. Keep in mind though she might not take all of them exclusively for that particular condition.
I would be interested if you named a few, and whether there’s any evidence of their usefulness.
If that’s the case the question becomes should she really be allowed to do that. I have no problem with that if the system allows for the patient being completely responsible for taking those drugs, but I don’t think any doctor or insurance company should be expected to take the fall for her. If the drug isn’t well documented and she doesn’t take part in a trial, I think she should finance treatment for any complications herself, and that could easily get more expensive than she can afford.
Her complaints are not the usual ones about the American system. What leads you to believe that it would be different elsewhere? The insurance companies add a gatekeeper, but it’s not the only one.
If she complained that the system simply denied her what she wanted, I’d find it quite plausible that there is more to the story. But instead she says that it is a struggle every month. What could be the other side to that story?
I only have a really vague idea of what those are.
I’m a doctor from Finland, and don’t think she would have similar problems here, if she really needed those hormones. Does something lead you to believe it wouldn’t be different elsewhere?
That’s what I find weird too. I can’t imagine why that would happen, at least in my country. I’ve never even heard of the kinds of complaints she has.
I don’t know, I’m not an endocrinologist. A wild guess amongst many: doctors really do have good reasons to believe she doesn’t need the amounts of hormones that she thinks she does (placebo), or even that they’re harmful. She could for example have a psychiatric diagnosis or lots of previous pointless visits recorded, which would strengthen this suspicion further. She would have to do doctor shopping to get her prescriptions renewed, which would make it a constant struggle.
I also find it weird the diagnosis took years when she had that severe symptoms.
I haven’t had much dealings with the medical profession, but her story didn’t seem wildly implausible to me—I have friends who’ve had a hard time, though not that bad, getting the care they need.
Anyone else care to weigh in on whether her story seemed implausible to them, or plausible but at the low quality medical care end of the spectrum?
From my POV, patients quite commonly have misconceptions about what conditions they have, what lead to their diagnosis, what treatments they’re getting or why and especially why they’re denied treatment. She seems reasonably intelligent and educated, so this is a bit less probable.
By the system I would mean the whole system consisting of communication between doctors and their colleagues and pharmacies, continuity of electronic patient histories, insurances, reimbursements and prescription policies etc. I’m saying that the problem could be in some of those parts, just to be clear.