View Full Version : Genetic Testing - Is it a better way?


Brian76
12-02-16, 02:14 AM
Hi All,

New to this forum, but I'm hopeful I'll get me some good advice. Looking at adjusting meds and wondering...

#1 Would anyone be able to speak to the validity of genetic testing?
*I'd really be interested to hear from those who have used this approach. Did it work? Did it speed up the process? I would also like to know whether you used it to adjust, or change your meds altogether, or if it was the first time you were prescribed something.

#2 Which genetic testing companies are reputable?

#3 Is there a specific type of genetic test I should make sure to get from "company x"?

#3 How much should this cost, really?
*The PA I see for checkups says $1,200 to get the testing, and that not all tests are created equal. He seems to think it may not be worth the money, but he said to do it with him if I do, so "it's done right." Think he may be squeezing me. I've heard about testing for $300 elsewhere (Genesight?) and saw one place charging as little $100 online. The testing would not be covered for me and I have a high deductible plan anyway.

Backstory:

I've felt for quite a few years that my meds are not dialed in right. I was actually only on an ADD med until a couple of months ago. I just added an anti-depressant that doesn't seem to be doing anything. To be clear, I'm not saying they don't work. I just don't think they are working well enough as my struggles with ADD/Depression continue to have a significant impact on my productivity in the workplace/school, which ultimately leads anxiety and unhappiness. I'm afraid to go off of my current meds for fear things may get worse. I'm also dreading the process. It feels like doctors/psychiatrists are throwing darts to figure out which meds work best... at my expense. :eek:

Thanks!!! Look forward to hearing what folks have to say.

namazu
12-02-16, 02:28 AM
I had this type of testing (Genesight) about 3 years ago.

It didn't cost much -- at the time, the company was offering to cover all out-of-pocket costs beyond $100, though I don't even think I had to pay that. I don't know if they are still offering that promotion.

It also didn't provide any "actionable" information for me, unfortunately -- I didn't have any unusual genetic variants that would explain my medication response (or lack thereof).

I will try to dig up a few older threads where the idea behind the testing and members' experiences are discussed in more detail...
Here's one. (http://www.addforums.com/forums/showthread.php?t=168775&highlight=genesight)
Here's another. (http://www.addforums.com/forums/showthread.php?t=147982&highlight=genesight)
Here's one on the MTHFR gene (http://www.addforums.com/forums/showthread.php?t=177666) -- which isn't included in the GeneSight ADHD test, but can be tested separately (by them or elsewhere).

The GeneSight tests look at a limited selection of genes associated with metabolism or medication response. I think the ADHD test looks at several variants in 3 genes, and their "psychotropic" test looks at variants in 2 genes. There are, undoubtedly, many more genes that affect a person's symptoms and responses to medications, but we don't necessarily know which genes they are -- or at least, there wasn't enough evidence to justify including them in the tests at the time they were developed.

For $1200, you can almost get your whole genome sequenced these days... (https://www.genome.gov/sequencingcosts/)

sarahsweets
12-02-16, 06:00 AM
1500$ + adhd tests of any kind = red flag to me.

Fuzzy12
12-02-16, 06:04 AM
I could be wrong but I don't think that the genes implicated for adhd have been identified yet. There sre some theories out there as far as I know but nothing conclusive.

So if you are testing for adhd a genetic test wouldn't give you the answer.

I'll defer to namazu's answer though. She knows more than me about this stuff.

namazu
12-02-16, 06:55 AM
I could be wrong but I don't think that the genes implicated for adhd have been identified yet. There sre some theories out there as far as I know but nothing conclusive.
There are a few genetic markers that have been associated with ADHD in population studies, but you're right that none is clinically useful for diagnosis of ADHD.

The genetic testing I was talking about is for genes related to metabolism of medications. Also not 100% predictive (in terms of predicting side effects or positive response or dose) but potentially useful for people who may be particularly slow or rapid metabolizers of common psych meds.

Brian76
12-02-16, 10:20 AM
So my follow-up question... It is possible for ADD meds to stop working after a few years, right? My original psychiatrist said as much to me at one point, but when I talked to him about the meds maybe not working as well anymore (this was after five years or so), he just increased my dose. The guy ended up retiring and I've just continued with that prescription ever since. My general doc renews the scrip and checks in with me every few months. Right now I take one generic 30mg Adderal tablet twice a day. Once in the morning and once at noon. I also take 10mg of Fluoxitine every morning - which hasn't appeared to change anything. I think I'm at, or close to the daily limit for Adderal. Definitely don't want to push it. If I move from Adderal, where do people with this same issue typically move to with some success. Thoughts... and thanks again for your help.

Little Missy
12-02-16, 11:10 AM
Dexedrine. Or, even better, for me anyway, is switching on and off of Adderall and Dexedrine intermittently. It works very well.

Brian76
12-02-16, 10:00 PM
Very helpful. I read a little bit about Dexedrine and was wondering about that pill specifically. Heard that it's a good one to go to from Adderall. Did you start off with Adderall and go through the same deal, where it felt like it wasn't working quite as well? How soon did you feel the results when you moved over? How often do you switch back between them? And do you use both in tandem? Sorry for twenty questions. Just anxious to get some answers from the people who would no best. Thanks!

ToneTone
12-03-16, 12:50 PM
Raising the dosage is what doctors do when patients report the med isn't working. That's the standard first move. Sometimes a higher dosage works! So your psychiatrist was following good protocol there.

You don't want to take someone off Adderall altogether .. when it's possible that a higher dose of it would do the trick.

I would say you probably want to find a new psychiatrist. In my experience, GP's aren't as comfortable increasing the dose of an ADHD med or changing to a new med. They're much more comfortable filing in, as you say, by just continuing the script of another doctor.

Really, finding a good doctor who is willing to adjust with you is the sharpest move. Maybe call your retired guy and ask for a recommendation. After that, any specific medication advice to you is useless because your body will react very differently to many meds than my body. So we all here just go through trial-and-error. New med ... report effects to doctor ... doctors considers adjustment ... you use the med ... again report effects to doctor ... evaluate ... decide next time ... and on and on ...

Many psychiatrists have their preferred meds (meds they feel safe prescribing and that they think have worked well with their patients), so it's not as simple as saying, "I want to be on Dexedrine." In my experience you have to build up a rapport and connection with the doctor and you both collaborate on the next step. Yes, many are open to cold suggestions for sure.

So I would say 1) report the weak effects to the GP to see (there's a wild chance) if she's willing to make a change .... 2) ask the GP for a psychiatrist recommendation ... 3) see if your old psychiatrist has a recommendation ... and go from there.

Good luck.

Tone