Medication Alert

Five  years ago I was diagnosed with an irregular heartbeat. It was put back into rhythm and I was put on a number of medications...diltiazem, amiodarone, levothyroxine, hydrochlorothiazide, and aspirin. I was told not to take Eliquis. My cardiologist thought it was dangerous. Since then, I have suffered with one side effect after another, nothing debilitating, just extremely annoying. Every day has been a struggle. I've not felt normal. At the time they were prescribed I did not question the medications, figuring the cardiologist knew what he was doing. I should add that looking back on my life, I had been living with this AFib for a long time; I remember feeling my heartbeat jumping around for years, and yes, there were times I had difficulties breathing, but also considered I was getting older. I don't look at this condition as being as devastating as it's made out to be. It's very common. The cardiologist came bouncing into my room when I first saw him, saying "you're going to be fine. I am going to fix you. Don't worry about a thing." 

I've seen three cardiologists and they all have different opinions. The first as I've said disliked Eliquis, another wanted me to take it while still another said he gave his patients no medications. One wanted me to take lipitor even though she said I did not need it; my cholesterol was 130. That made no sense. The first night I took it I could not close my eyes. Insomnia is the most common side effect of all of these drugs. At one time given linosopril? instead of the amiodarone I believe, I had an immediate asthma attack. The doctor said that happens sometimes. Generally, I've found doctors do not like to hear about side effects. I've not had one talk to me about them when I bring them up.

To sum up the last five years, I've recently taken a more active role in my own diagnoses, and pretty much told my general practitioner and cardiologist what I will or won't do. I've done a lot of research, questioned a lot of people and the doctors, and scoured the internet for any information I can get.

So, here's my real problem as I see it now and I believe that I am on the right track. When I was initially given amiodarone, I heard the cardiologist say he had to give me levothyroxine because amiodarone affected the thyroid gland. Ok. I did not like the sounds of that.  The thyroid gland runs and regulates the body, It apparently can take years for it to affect anyone negatively if it is going to, and during that time, other problems are considered the reasons for you not feeling well. I am now 81 and look back on my teenage days and wonder why I was always so tired. I played sixteen years of professional baseball and wondered the same thing. No doctor ever told me my thyroid hormones were out of whack.  As I've gotten older, I've had more difficulty breathing and have tried to find out why. Within the last year a liter of fluid was drained from one lung. It was clear, free of cancer and everything else, no problem.  My breathing changed a little with the extraction, but it has still been a struggle. My regular doctor recognized that I probably have an autoimmune disease because one eyelid was drooping. And he was right. I do believe I have myasthenia gravis. It affects facial and respiratory muscles which are problematic themselves. 

My focus is now on my thyroid gland, and I think, along with my doctor, that we are on the right track. I reached a point where I was fed up taking all of the meds I was initially given and finally, after five years, told my doctor I was going to stop them. No one could tell me what they were doing to help me, and, yes, I know doctors are supposed to know what they are doing, but I've realized they do not know me.  My GP allowed me to get off them. It's been about five weeks now, and I've had withdrawal symptoms that have been horrible, but there are times that I finally feel normal. Why did I want to get off my meds you ask? I was concerned that the amiodarone may have further damaged my already messed up thyroid gland. One recent blo0d test showed my TSH hormone at about a level 4, four months later it was at 0.16, and I was a mess. I had no thyroid hormone. Why? Amiodarone? A five-year build-up of meds? The wrong meds? I haven't taken any levothyroxine either in the meantime, and I am beginning to feel better. I understand more about the thyroid gland and how the hormones level themselves out in our system as needed, and I believe my system has been attacked by meds I should not have been taking. Even my doctor has recently said that maybe I don't need any. l believed that getting off my meds and then having my blood tested we would know what meds I really needed. That seemed to make more sense than just stuffing me with meds as a precaution after my cardio version.

So, by getting off my meds I battled a hyperactive thyroid for a while that caused me to feel really lousy. That quickly switched to a hypoactive thyroid that I believe my body did on its own once I stopped taking everything. Hypothyroidism is apparently easily managed with levothyroxine. As of now, I'm waiting to see how my body reacts to no meds at all. It takes weeks, sometimes months for the thyroid gland to regulate itself, so I have to be patient, but I think I am doing fine. I definitely feel the side effects of hypothyroidism but feel better every day. I know people who have spent years trying to find out the right dosage of medication for their thyroid.  All I can say is take charge of what medications you are given; you are not going to hurt anything if you are healthy overall. Doctors are doing nothing more than making guesses themselves as to what will work for you. If you look at your meds, you will see that every drug has pretty much the same side effects listed. They mask our problems. Don't get me wrong, I don't pretend to know that what I am doing is right, but I have spent a lifetime monitoring my body because of my profession, and I've made many right decisions.  I am careful. 

I now believe I've had a thyroid problem my whole life, but like my doctor said, I was "strong" enough to live my life, plowing through the tough times with low energy levels.  I remember not being able to run 1/4 mile, but I've run two marathons. I know that even at my age, the body is so remarkable that I will bring it back to life. This thyroid problem has affected me at times to the point that it hurt to walk, my muscles cramped, joints hurt, I did not want to do anything but lie down. I've lost strength and weight, although I am at my playing weight now. I've had extreme fatigue. I know if I push myself like I've done my whole life, I am going to be fine. I have some heart issues, but they all seem to be related to my lung and the thyroid issues. All my doctors say I'm fine. They do not seem worried about anything. My GP says I have a very strong heartbeat. I am going in for a full complete blood panel test in about a week; I told my doctor to have everything that can be checked, checked. Only having a few things checked is not working for me anymore. We need a full picture of what's going on inside me.

I wanted to post this for those of you who live on meds, and who give up. Take care of yourself. Doctors can only do so much, and I've talked to so many people who just listen to what they are told. I'm not saying rebel but take an interest in yourself. With the right attitude, change of diet, exercise, and wanting to change, you can.  The doctor I have now works with me; he talks to me, answers my questions. I've had to cultivate him. He seems hesitant to tell me things....like I am an idiot for stopping my meds...and I understand. ...one of my cardiologists did and got mad at me. He retired a week later. It wasn't easy for me to stop them by the way, but so far so good. My doctor does not have to live with what I live with every day. I tell him everything so he can give me his best advice. I''ve also had the experience of taking care of my dad for the last two years of his life. Giving about 15 medications at one time, the poor guy hallucinated. Cut back to three he was fine. He had a heart doctor who wanted to operate on him at age 87 saying there was a 25 percent chance he would not be able to walk after.  The guy was an idiot. Dad passed away in his wheel chair at 93.

it is now six months later, and I am now on Snythroid for my thyroid, and what a difference it has made. My GP made the change after we got my blood test numbers in line. In my research I found that the myasthenia gravis symptoms, droopy eyelid, trouble swallowing occasionally, muscle weakness, cramps, etc. were also side effects of a thyroid problem. I'd always suspected my thyroid was to blame for how I was feeling.  Synthroid has, for now, and its been about a month or more that I've been on it, cleared up the droopy eyelid, my swallowing has been normal, and I am eating more than I ever have, and don't put on weight. All my life I've had to watch what I ate because I could put on twenty pounds in a wink. I now know for sure that I've had a thyroid problem m y whole life. I feel better than I have in a long time; it's just a shame that I will be 82 in another month. I used to be so tired I struggled to play with my kids.  b, and I didn't know what the problem was. Now I do. Check your thyroid and do some research on your own. I learned so much bit by bit; there is a lot of info on the internet.  As good as my doctor seems to be, he does not know me like I know me. I won't get into why, or what I've dealt with with a new cardiologist, but I think the thyroid problem was  also affecting my heart. I've had all kinds of test and scans and from what I can tell, including how I feel, i am in pretty good shape.