Is genetic testing for psych med management legit?

February 17, 2017 8:23 AM

Are genetic testing and neurotransmitter level testing legitimately useful for medication management or just medical novelty?

I'm working through some psychiatric medication management trials and tribulations trying to get things stabilized for a PTSD diagnosis. I currently see a PMHNP who messed up some things, and I don't have a whole lot of faith in him to do a passable job at this point. I'm in the process of trying to find a new provider.

When I contact potential providers, I give them a list of just over a dozen drugs I've tried (loads of SSRI's, SNRI's and some other odds and ends) that have either had horrible side effects, or straight up allergies to. This has prompted a couple potential providers to back away slowly in to the bushes, and say they don't really have the ability to help.

Because of the arm-length list of 'shit that doesn't work,' my current provider (again, who I don't really trust to do a Good Job), as well as a few other potential providers that I've contacted have suggested doing Genomind genetic testing and (some brand I don't know) Neutotransmitter+Cortisol testing to see how certain psychiatric medications might react.

I'm having a great deal of difficultly trying to parse out if these services are legitimate or not. I called my PCP to ask his opinion, and he basically said he had no opinion on them, and hasn't used either of them. The Psychiatrists/PMHNPs who are suggesting that I take it into consideration are also the same ones who offer hypnosis and have some pretty damn strong feelings about gluten. There seems to be a 'type' of provider that's drawn to this service (which are providers I would normally not go to, because of these non-evidence based treatments they offer, but my options appear to be limited at this point with providers that have the ability to take on new clients, and are under my insurance, but that's a different ask topic altogether), and I'm having a really difficult time finding reasoned looks at these kinds of tests. I understand that sometimes useful, proven things aren't covered by insurance for a variety of reasons, but I can't figure out what is the case with this. Are they too new to be covered? Are they ineffective or inconclusive?

My insurance doesn't cover them, and I can't really swing the cost unless this would be some incredibly positive breakthrough for medication management.

TLDR; Are genetic testing and neurotransmitter/cortisol level testing legitimate? Is there a balanced, nuanced take on these out in the wild right now?

posted by furnace.heart to Health & Fitness (8 answers total)

They are a real thing and are a growing part of psychiatric practice, but may not be totally necessary to care. There are genes that have been identified that impact how and how quickly different medications are metabolized by the body. Those are known and understood relationships.

The difficulty is that each genetic panel looks at a slightly different combination of gene locations, not the whole genome, so you are getting a thorough but limited look. The other thing to keep in mind is that while we know that these particular gene locations impact metabolism, we might not know ALL of the sites that impact metabolism and we might not have a full understanding of how different changes might interact with one another. There is also variability in terms of what kind of background and training your particular provider has in making sense of the information, ranging from they're able to read the report the testing company sends to having a deeper understanding of the genetics and what might be implied but not specifically stated in the report. That can make a difference.

So, it might be helpful to get an understanding of why specific medications might work or not work as well for you and that might give some helpful guidance in terms of what classes and combinations of medications to try next. There is a possibility, though, that it will not yield any additional information. That is a decision to weigh with your provider; how to balance the cost with what you might learn.
posted by goggie at 8:31 AM on February 17, 2017

Might be of interest.
posted by praemunire at 9:01 AM on February 17, 2017 [1 favorite]

I work for a genetics division of a hospital, and my docs are not fans of "pharmacogenomics" yet. As goggie stated above, what testing is available now is just scratching the surface and needs to be taken with a grain of salt. I think getting a good idea of how well one metabolizes various medications/chemicals is probably 5-10 years down the road.
posted by kuanes at 9:13 AM on February 17, 2017

I have had DNA testing done that gave me a list of mental health drugs that I metabolize normally and those that I metabolize abnormally due to genetics. It didn't help me at all. I still had terrible reactions to drugs that were listed as good genetic matches for me. And the one I ended up having a positive response to was on the list of medications to avoid because I was an ultra rapid metabolizer. So the whole thing ended up being rather disappointing.

However, I will admit that having those test results did make me more likely to try things. As a person with anxiety, I have a hard time even getting myself to take a pill. So having a piece of paper that basically said, YOUR DNA SAYS YOU SHOULD BE FINE ON THIS MEDICATION was a really comforting thing to have and made me a lot braver about giving different meds a try.
posted by ilovewinter at 9:47 AM on February 17, 2017 [1 favorite]

I can offer personal anecdata. I was recently referred to a widely respected provider in my area. She had me do genetic testing, along with blood labs to test for any obvious medical issues.

Put together with my history, it explained some symptoms and side effects I'd had and was having (including why certain types of meds didn't work for me), and provided a fuller picture to indicate what direction to go in.

It's still very much an incomplete picture, though, and because I am a Special Snowflake, the meds I'm trying now are imperfect. Thing is, they're a lot better than nothing, effective where others weren't or made things worse, and if nothing works better, I feel like the improvement is a good trade-off for the side effects I get. I still have other options available, though, and like ilovewinter, I feel open to trying things again after such crappy experiences in the past.

I look forward to when this science isn't in its infancy.
posted by moira at 3:07 PM on February 17, 2017 [1 favorite]

The institution that I work at (major academic, tertiary care) does this for a subset patients who seem to be refractory to many psychiatric medications as well as other types of medications; it is considered a branch of personalized medicine. The testing is supposed to give your provider some sense of what medications you may metabolize more rapidly or more slowly than average; some other data points may give some information about the likelihood of responding to certain medications. You are correct that this medical technology is a relative medical novelty; some academics argue that it is "not ready for prime time", although other studies suggest that patients who undergo and follow the recommendations from pharmacogenetic testing enjoy a significantly greater chance of clinical improvement. In my very limited experience: I think in some patients, the allure of the novel, as well as the cost and effort, culminate in a sort of placebo effect that finally yields some clinical improvement. In some other patients, they just happen to be super-metabolizers of such-and-such drug so they likely didn't ever achieve therapeutic levels with certain medications, and that sort of thing can be confirmed via pharmacogenetic testing.

Is it worth it for you? A responsible provider should weigh the benefits and costs of pursuing such testing, especially because it isn't covered by your insurance and is not guaranteed to give you any information that would dramatically change treatment at this point. How severely impacted is your quality of life as is? Can you stand to continue with the trial-and-error approach, with each psychiatric medication trial lasting about 6-8 weeks? Do you have any siblings or family members who have been on psychiatric medications that seemed to work for them? These are things you can and your provider can ask to figure out a good plan.

Research has also shown that one of the most significant factors in how patients struggling with mental illness fare is the therapeutic alliance-- how well you connect with your provider-- even when the treatment approach is pharmacologic (as opposed to talk therapy). This is why it is worth searching for a provider you trust and work well with.
posted by gemutlichkeit at 8:40 PM on February 17, 2017 [1 favorite]

You sound very like me in your reaction to psych drugs. Speaking as someone who took most of the drugs I was being tested for before genetic testing was available and had the testing confirm my experiences years later: yeah, it's a thing, and being in the infancy stages or not being perfectly accurate doesn't mean it's a placebo or a novelty. Lots of psychiatrists provide it now just as a matter of course. I did Genomind (covered by insurance for me, and my PCP's office also had a reduced payment plan for it if it wasn't), there's other companies but the results are the same, so it doesn't really matter which you pick.

All of the psychiatrists I've seen who provide this are the total opposite of the sort of hippie-gluten-hypnosis kind you're describing, very serious evidence-based science people, if that helps.
posted by colorblock sock at 11:31 PM on February 17, 2017

Response by poster: Just as an update: I ended up getting the testing done because I qualified for a drastically reduced payment, even though my insurance wouldn't cover it.

The results came back incredibly muddled. In some instances it confirmed why certain drugs hadn't worked, but the majority of the results were that there were no genetic reasons for my poor reactions to most drugs on the list. There are a few drugs we haven't tried that were listed as suspect on the report, so they'll be bumped to the end of the line. So in that sense I guess that's helpful.

I mean, it was cool in a GATTACA sort of way that I now know I'm not crazy when I go to the dentist and tell them I need twice as much Novocaine when I get dental work done, because there was a bright red band over the gene sequence responsible for processing that.

But, there was one set of genes that was tests that came up as a potential problem that wasn't on anyone's radar for this, but could possible be an avenue to pursue. I'm working with providers now to figure out if the cost/benefit of dealing with it would help.

Overall, it was slightly enlightening, and totally interesting for sure, but the utility of it is far from confirmed.
posted by furnace.heart at 7:47 AM on April 7, 2017