gertie Posted June 24, 2009 Report Share Posted June 24, 2009 I am so disgusted with myself. Everytime I have been given a new drug for an illness I start taking it with optimism. I always think this is going to be the med that makes me feel better and so far everything makes me feel worse. The only thing I have been able to tolerate as needed is Ativan & Neurontin & it's probably because I don't have to take them very often. I started on Armour for Hashimoto's thy. & after taking it for a month I am so lethargic I can't function. I thought I would have so much more energy & it's been the opposite so I stopped taking it today. I've tried different doses & different thyroid meds & they all make me so much worse. I give up. The doc wants me to try small doses of iodine but now I'm even skeptical of that.Is anyone else like this? Is this a part of dysautonomia? Forgive me if I've asked all this B/4. Thanks for listening. Quote Link to comment Share on other sites More sharing options...
all4family Posted June 24, 2009 Report Share Posted June 24, 2009 I know a lot of people with dysautonomia have troube taking medications, but I just don't tollerate them period. I was my sickest when I was trying different ones, then I was able to "tollerate" xanax, but I believe that the only reason I could was that in the beginning like you said I wasn't taking it all the time, and I took 1/8 th of a pill, which was already the smallest dose. I ended up really sick on this drug as well. Finally years after I got off of all the drugs I found out why. I am lacking a gene that metabolises drugs. The doctor told me that certainly all the problems I had with the drugs were due to this, and not "in my head" like I had been told. He told me what would be a normal dose for others, would be an overdose for me. And that the drug builds up in your system, so you might be able to handle it the first or second dose, but the effects build up. I don't have my medical paperwork with me right now, but when I do I will tell you the name of the gene. There are several you can be tested for if you want to find out. Have you told your doctor about this trouble? Please, please do not blame yourself. Do not think it is because of your attitude about it. If it were you wouldn't have tried taking them to begin with. I did this to myself, the blaming thing, and I just ended up really sick. You know your body best.Suzy Quote Link to comment Share on other sites More sharing options...
Broken_Shell Posted June 24, 2009 Report Share Posted June 24, 2009 Hi Alicia,Many of us understand all too well. I try medications in good faith and think positively, but my body tends to reject nearly all of them, no matter how benign they are or how small the dose. I do have a couple of suggestions that help me.... I try to use topical medications in place of oral whenever possible. I also try things at very, very tiny doses... literally 1/8 to 1/6 of a the smallest dose of a pill. If it's a capsule, open it up and pour some of the contents out, and then reseal the capsule to take the smaller dose. I am sorry for your frustration and struggles. I wish I could be off more help, but it's a rough situation trying to find a balance and things that are tolerable and acceptable for our bodies!~ Broken_Shell Quote Link to comment Share on other sites More sharing options...
Tammy Posted June 24, 2009 Report Share Posted June 24, 2009 Suzy,I'm curious how they tested you for this gene that doesn't allow your body to metabolize medications properly. Is it just a blood test they do? I've always wondered if my body just can't metabolize meds right or if my liver has issues with them, etc. So when you find the information as to what it's called, let me know also. Thanks Quote Link to comment Share on other sites More sharing options...
all4family Posted June 24, 2009 Report Share Posted June 24, 2009 Hi Tammy,Yes it is just a simple blood test, and I can't for the life of me think of the name of it. Which I am supposed to know if I need treatment oops. I will find it in the next hour, and let you know. It was very helpful for me to know this, so if I have to take something they can give me a smaller dose. It also helped me so much because I had been told that I was "scared" of taking medicine. If I was I never would have had to withdrawl off of them. But this just told me after all I had been through that I was right. I will find the name here in just a minute.Suzy Quote Link to comment Share on other sites More sharing options...
Guest elyag Posted June 24, 2009 Report Share Posted June 24, 2009 I can only tolerate a few meds. I take Ativan for sleep and still do fine with it. And a baby aspirin to prevent migraines. That's it. I can't even take Tylenol anymore Quote Link to comment Share on other sites More sharing options...
all4family Posted June 24, 2009 Report Share Posted June 24, 2009 Ok, I found it in an e-mail I had to someone. it is the cyp2d6 gene. It is genetic testing, and takes a while. There are more then one they can test you for. I am supposed to go back, and be tested for the new one that just came out. It is very new, so a lot of Drs. may not know about it. I had it done at Mayo Clinic. If you pull that gene up on google you will get some information on it though. I hope this helps. Quote Link to comment Share on other sites More sharing options...
gertie Posted June 24, 2009 Author Report Share Posted June 24, 2009 Thanks Suzy, if I knew I was lacking a gene at least the medical community would listen at me when I tell them that 1/8 of a dose is all I can take. Thanks again! Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted June 24, 2009 Report Share Posted June 24, 2009 Hi,I wanted to bounce in on the conversation about testing to see if you metabolize drugs correctly etc. (the gene Suzy is talking about). What I was told by a local allergist when I asked her about a test to see how I metabolize meds, was that those tests are only available commercially and not by dr. prescription. They are still more of a research tool. But, I believe she said that you can (if you really want to) try to contact a company that tests for it, and have it performed privately. So, I do not see insurances covering it, or many drs willing to interpret and utilize the results. So, at this point for myself I figured that it wouldn't make much difference, so I have not pursued it. But, it appears through Suzy's experience that Mayo does do it, so if you are serious about getting it done it sounds like you have to go to Mayo.Hope that helps somewhat! (bit of a bummer, I know! ) Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted June 24, 2009 Report Share Posted June 24, 2009 wow suzy, that is great to know. it would be one more thing to make us feel were not crazy. i get tired of hearing each time i'm admitted, "she's the lady allergic to everything!" and they're standing right outside my room. MY EARS RING, but I can still HEAR. now with all the health cuts i'm worried about getting simple needs met now, let alone asking for extra tests. at my weekly infusion, the nurse was telling me, people will have access to medications, but getting their medical care will be harder and we may lose our choices in who we see. i must trust that all will work out for the best, as this and many other things are out of my control. blessings and love,bellamia~ Quote Link to comment Share on other sites More sharing options...
futurehope Posted June 25, 2009 Report Share Posted June 25, 2009 Wow! I wonder how easy it would be to get tested if we don't go to Mayo? I know I'm sensitive to many things and I also know that if I would try to take oxycodone or something similar, I would feel poisoned----no kidding. I once took a pain killer and thought I'd feel better if someone took a gun and "did me in". It would be quicker and more merciful. I live in fear of ever "needing" pain pills. I'm going to see my neuro tomorrow and I'll ask him if he knows anything about "how" to get tested. I sound like I might have a defective CYP2D6. I checked out the website www.pgxlab.comI wonder if a gene can be "partially" defective? Quote Link to comment Share on other sites More sharing options...
all4family Posted June 25, 2009 Report Share Posted June 25, 2009 Wow! I wonder how easy it would be to get tested if we don't go to Mayo? I know I'm sensitive to many things and I also know that if I would try to take oxycodone or something similar, I would feel poisoned----no kidding. I once took a pain killer and thought I'd feel better if someone took a gun and "did me in". It would be quicker and more merciful. I live in fear of ever "needing" pain pills. I'm going to see my neuro tomorrow and I'll ask him if he knows anything about "how" to get tested. I sound like I might have a defective CYP2D6. I checked out the website www.pgxlab.comI wonder if a gene can be "partially" defective?Yes there are 2 parts to the gene, and I am only missing one part (thankfully) or I would probably not have made it through all the meds I took. I really relate to you with the pain pills. I tried telling drs that this just makes things worse for me, and they say that's not possible. They are designed to get rid of pain ! The pain I suffered while on drugs was unbearable, and the worse part was I just wanted to be able to take something for it, but I couldn't. I have the same fear of pain pills, and really any other at this point. I hope you can find a way to get tested. It was really helpful to me. Suzy Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted June 25, 2009 Report Share Posted June 25, 2009 I am supersensitive to some medications - anything that messes with blood volume in particular. Florinef made me restless, alpha agonists make me jumpy - betas are all I can tolerate. I can take other medications fine though. Quote Link to comment Share on other sites More sharing options...
maggie Posted June 27, 2009 Report Share Posted June 27, 2009 I did have my dna tested by pgxlab and it was very easy to do. I just printed out the script online, my doctor signed, I couldn't get my blood sample sent from Florida to Ky so they sent me out mouth swabs and I sent them back. I have that enzyme trouble. I have a doctor's number who I call every time a doctor wants me on a drug and she tells me if I can take it or not. The test can't tell you exactly how bad your enzyme is but it gets you closer to some answers. The doctor I work with did a trial test with me to get a better idea of how bad mine was. Mine is so bad that she told me any of the meds that go through that enzyme I shouldn't take. It was the best money I ever spent. It takes all the guess work out of what meds I can take and what ones I can't. When I took the test they didn't take insurance, but they do now. You can pm me if you have any questions.Maggie Quote Link to comment Share on other sites More sharing options...
gertie Posted June 27, 2009 Author Report Share Posted June 27, 2009 That would be great to know if a med was going to make you sicker b/4 taking it. Do you remember approx how expensive it was. I'm on a fixed income so I probably couldn't afford it but it's worth checking out. thanks for info. Quote Link to comment Share on other sites More sharing options...
maggie Posted June 27, 2009 Report Share Posted June 27, 2009 If you go on pgxlab web site and call the number on the site they are very helpful in every area. They will tell you what tests you need and how much it will cost. I had mine done in 07 and know the prices have gone up some. When I had it done I had every test they could give. I was afraid they wouldn't be doing this type of thing any more and I wanted to know everything I could. My one sister had it done for alot less because she only did the test needed. Just call them they are so caring and concerned. At the time I had mine done they were looking for people to do this on for their research. Don't be surprised if you get it done and some doctors don't believe in this. I have had several doctors who never heard of this so they just dismissed this research. Then I know I'm at the wrong place.Maggie Quote Link to comment Share on other sites More sharing options...
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