The fact that it's not an intuitively obvious problem is definitely a reason for it's lack of diagnosis. I asked my Mayo Pharmacist is these are rare, and he replied with , "No, but they are very rarely diagnosed because the testing isn't widely available."

I actually promoted Mayo to figure this out for me. Last November, I wrote my primary in endocrinology an email stating that I was sure that a medication I was on was making me sick, and I added that I had had odd reactions to medication my entire life. Not really adverse reactions, but really weird reactions. So I asked him if drug hypersensitivity was a thing, and if so if they could refer me to Allergy/Immunology. He immediately referred me, and I wasn't able to get in until January, but I had a free day during my December week there, so I checkered into an appointment with Dr. Daniel Maddox. He suspected P450, but wasn't sure. I told him that I had read something about P450 recently, and he told me to find it when I got home and email him. After a few exchanges, we were certain that I had a P450 issue, and he referred me to Pharmacogenomics. What I liked the most about him was that he seemed genuinely-pleased that I had done research and was able to talk to him about this stuff.

If you suspect that you also have P450 polymorphisms, wait until January-ish and look into having it done by Mayo then. Trust me on this one.

Bittersweet story about this… I saw my local nephrologist today. Before I left, she thanked me saying that she’s been able to learn a ton from me because of this P450 issue, plus she said, “Don’t take this the wrong way, and this is going to sound weird, but you are probably the perfect person for this P450 thing to happen to.” I was like, “Ummm… whatttta?” She said that because I’m “savvy” and have taken the time to educate myself and advocate for myself -- mostly because for years and years, I kept pushing and pushing and pushing doctors and was willing to travel until someone figured out the answer — and especially because I was the one who asked Mayo to test me for drug hypersensitivity -- that I have done more than just save my own life. I told her that I’ve always just been kinda feisty, that I just knew that I was genuinely ill and wasn't going to allow any doctor to tell me otherwise, and that I just had to keep going until this was figured out.

Then I asked what other people do, and she replied with, “They just give up.” :'-(

You are your best advocate!! Not many people are confident enough to do that. You should be very proud of yourself. Sorry the road has been so difficult. As I have learned from my own complicated journey, it is through our trials we become stronger both for ourselves and GREAT advocates for others who can not do it for themselves.

Smiles
Dawn

Agreed! After learning so much stuff, in addition to learning how to navigate the system, helping others do the same is just the right thing to do.