Adverse and side effects of Amiodarone, cordarone and pacerone

My name is Cecil, and I'm 60 years of age. When I was 34, in 1982, I had a myocardial infraction (MI), heart attack. The problem was a blockage in the right coronary artery. A residual of the MI was a problem called sick sinus syndrome. This is where the heart will take off into irregular beats. I did pretty good with this problem, with the help of a drug called Calan, or the generic name of Verapimil.

Then in 1998 I came down with viral pneumonia which the doctors believe is what caused my heart to go into Atrial Fibrillation (A-Fib). This is characterized as a storm of electrical energy that travels in spinning "wavelets" throughout the atria, causing the upper chambers of the heart to quiver or fibrillate. There are several ways to deal with this problem. One is to electrical covert the irregular beat back into sinus rhythm. Or two with the use of drugs. Even after electrical conversion, drugs are normally used to help keep the heart out of Atrial Fibrillation. Amiodarone is one such drug.

During this first episode of A-Fib, I spent a week in the hospital. The doctors started to administer what is called a loading dose of Amiodarone. This is a large dose of the drug that is given via IV over several days. I also received a dual lead pacemaker to help pace my heart due to the slowing effect that the drugs would cause, as well as to deal with the Sick Sinus Syndrome. When I left the hospital I was still in A-Fib, and was for another 20 days. The drugs that I was on, when I left the hospital, were Digoxin, Atenolol, Coumadin and Amiodarone. After several weeks I was taken off of Atenolol due to the low blood pressure I was experiencing at the time. The Coumadin (a blood thinner) was discontinued when my heart went back into sinus rhythm

I continued to take the Digoxin and Amiodarone for several more months ( in October), when I started to experience adverse reactions to what I and my Dr. felt was the Digoxin. I had a reaction to this same drug soon after my MI, and we just assumed that this was the same problem again. I stopped taking the Digoxin and started to feel much better after several weeks.

Then things started to go south. I would wake up in the morning and could hardly get myself out of bed. The rest of the day I felt terrible. It's hard to explain just how rotten I felt. Extreme fatigue, headaches, no ambition, an all around feeling of bad. This went on from around February 1999 through March. After complaining to the Dr. as to how I felt he took me from 200mg of Amiodarone twice a day to once daily. I still didn't feel much better and after three weeks or so I skipped several days of not taking the drug at all. I still didn't feel any better and once again started taking the Amiodarone. After restarting the Amiodarone, within 3 hours of taking that first pill, I was back in A Fib and back in the hospital for three more days. I again was placed back on the Digoxin and the Amiodarone was increased to 200mg twice a day. This was in May of 1999.

I felt like hell, but my heart did go back into sinus rhythm. I talked the Dr. into taking me back off the Digoxin after several weeks of still feeling ill.

As time passed I didn't seem to be getting any better. Just felt terrible 24 hours a day. No energy, and just an all around bad feeling. I wanted to sleep all the time. I then started to experience a sticking pain in my right side. Sometimes in was in the lower part, other times in the upper. I also started to notice a sensory disturbance in my face. It was from just below the nose out to about the outside of the eyes and down to the chin. This would come and go. Also visual halos, dizziness, tremors and respiratory insufficiency. On the first of June 1999 I stopped all medications and returned to my Doctor around the 10th or the month. I told him I needed something done, I couldn't stand felling this way. He suggested that I was experiencing an adverse reaction to the Amiodarone and told me to quit taking it. He also said he was sorry.

Now the Bad News

This drug just doesn't leave the body as soon as you quit taking it. And the adverse reactions are many. It is now Mid August, 1999 and I'm still experiencing the sensory disturbance of the chin. It has confined itself to just the chin and not the large area that it was before, but it's still there.

I have also noticed that the withdrawal of this drug kind of goes in phases. I felt bad the first two weeks of June, and then started to feel good for two weeks, when the whole process of feeling bad starts over again. In the first part of July, and running for approximately two more weeks, I felt bad again and then an improvement for two weeks. Now on the first of August the ill feeling came back again, but this time I think it was worse. In this latest episode I have experienced hypertension (low blood pressure), dizziness, the ache in the right side along with the chin sensory disturbance. Felt like someone has their finger stuck in your chin just below the crease below the lip.

Now its the middle of August and I'm starting to feel better once again. HOW long will this stuff stay with me?

I've done extensive research on the adverse reactions of this drug and have found that I most likely have another four or five months to deal with this issue. I found one government site that references a 74 year old man who developed pulmonary fibrosis along with other adverse reactions, and it took him seven months to slowly get over the reactions. By the way, my understanding is that pulmonary fibrosis is fatal. You don't get over this stuff. The site is at http://www.health.gov.au/tga/docs/html/aadrbltn/v14n2.htm ****(Update.. Looks like the pharmaceuticals have gotten to the Australians too as this was a site from their government health department. I just checked the link today 7/05/2004 and that page is no longer there.)

Also if you want to read up on Amiodarone there is a great site to research drugs at http://www.rxlist.com .

After reading of the serious side effects that this drug has to offer I once again have returned to my primary care physician for a checkup to make sure that I haven't acquired one of the associated problems that comes along with this drug. Some are listed below. Others can be found at the drug research site.

If you have had an experience with this drug and would like to share it with me please do. Also if you would like to ask any questions please feel free to do so. My email address is cecilc@coyote-howls.com

I went to see the eye Dr. today and was told that I have deposits on my cornea due to the Amiodarone. I have noticed that the visual halos are diminishing but are still there after 90 days off of the drug. He says that according to what he understands the deposits should improve with time....

Well here we go again. I have been returning to my primary care physician complaining about a shortness of breath. Also my arrhythmia's are starting to increase. My cardiologist has put me on Rythmol to help control the problem with some positive results. A test of my thyroid, TSH, came back at .36 a few points into the hyperthyroidism scale. They have re-tested the TSH and requested a T4 to confirm hyperthyroidism. (I await the results.) This explains my increase in arrhythmia's as this is a symptom of this condition. I had a complete blood work up in August and the thyroid was borderline but within the suggested range for being ok. Hyperthyroidism is another side effect of this drug. It has now been 196 days since I last took amiodarone. Stay tuned for the results.

The results from the endocrinologist confirms that I'm running in and out of hyperthyroidism. My TSH was back at .36, with a T4 of 63. The Dr. feels that this is a result of the amiodarone. Good news is that she feels that it MAY resolve itself with time. How much time? This she couldn't answer. It's has now been 249 days that I've been off of the drug. I have started to feel somewhat better in the past three weeks. I sure hope this is the trend, but won't get excited just yet.

Its been a while since I have updated this page as many things have transpired over the past few months. Around February 15th I ended back in the hospital for five days due to Atrial-fibrillation and congestive heart failure. My ejection fraction, as measured by echocardiogram, was around 25%, 55-60% is normal. So my heart has gotten weaker. The Dr.'s have started me on Betapace, a beta-blocker to help slow the heart rate and try and control the atrial-fibrillation. Actually I'm on a few other drugs beside the Betapace. Lasix, K-Dur, Lanoxin, Warfarin, Spironolactone and Zestril. On March 13th I went back into the hospital for a cardio-vert to try and shock my heart back into rhythm. I think it lasted till I got to the car in the parking lot and I was back in a-fib. The Dr does not want to try another cardio-vert, so they have left me in a-fib.

I also returned to the endocrinologist and my thyroid is still cooking. My TSH tested at <0.02. I have lost 24 pounds since I was in to see her in late January. The funny thing about this is my TSH tested as having hyperthyroidism, but the T4 and T3 are within a normal range. (I have also heard from a person who was on amiodarone, and visited this site, that has the same issue with the low TSH, and normal T3 and T4. "A side effect of amiodarone?" I have all the classic symptoms of a hyperthyroid. Unexplained weight loss, tired, nervousness. the 24 pounds that I lost was from a 175 pound 5' 11" frame. I eat like a horse. I have been told I have nervous leg syndrome, as I can't set still. I have slept 10 hours at night and needed a nap in the afternoon.

My Dr feels that my thyroid is hyper. She has started me on a drug called propylthiouracil. This is to slow up the thyroid. This is more of a trial then anything. She wants to see if the TSH is back in the normal range and what happens to the T3 and T4, after being on this drug for two weeks. Where we go from here is really up to her. I have just about had it with the results of being on amiodarone. An overactive thyroid can cause atrial-fibrillation. This has been no fun. When the heart is in a-fib it doesn't pump as efficient and only adds to the symptoms of congestive heart failure. Shortness of breath along with the fluid build up of the lungs is the worst. I've told her to fix it. I hope that she can.

Just a little FYI. This site seems to be getting a lot more traffic then in the past. From 3 to 10 hits per week to around 8 to 15 per day. Does that mean that the use of amiodarone is on the rise? I hear from less then 10 percent of the people who visit, but many are very interesting. I have heard from 6 people who have lost loved one's due to amiodarone toxicity. And many more who are experiencing effect much as I am.

On 7/12/00, I had a thyroid uptake test and scan. They decided to give me the radioactive iodine I-131 to destroy the thyroid and hopefully improve on how I feel. I did very good till the ninth day after the process. At that time I had a very bad case of atrial-fibrillation and ended up back in the hospital for 24 hour observation. From my research, on the I-131, it has the ability to create anything from a "constellation of nonspecific historical features to an acute life-threatening" thyroid storm. I think I was somewhere in-between, from the 9th through the 13th day into the procedure. After taking the I-131, the effect is not felt immediately, but takes many days and even weeks to reach a peak. A good site that explains hyperthyroidism, graves' disease and thyroid storm can be found at Thyroid Disease - Home Page You may have to search though it a bit but this is a good site on Thyroid Disease.

Sorry for taking so long to update this page, but life has been keeping me on the run. I returned to my endocrinologist around mid August. A good six weeks after the I-131 treatment. Test results show that my thyroid is currently right on target. My TSH was at .72. A great improvement from the <.02 it has been for the previous 6 months. It is now October and I can tell you that I feel much better. Instead of suffering a-fib just about everyday, to currently about once a week. And instead of the bouts lasting 24+ hours, they seem to be down to three to six hours at a time. It's great to actually have several days together of no a-fib.

I have also seen an electro physiologist in this same time frame. The only thing he wanted to talk about, to cure the a-fib, was an AV node ablation. That would make me totally dependent on my pacemaker to remain in an upright position. He has even had his office call me to see if I was ready to schedule the procedure. (I guess he needs the down payment for a new Mercedes. My understanding is the cost is around $16k). I told them I wanted to wait to see how the a-fib responds to the slowing of the thyroid. I even asked my cardiologist about having the procedure done and he is on my page about waiting. All I know is there is definitely an improvement. I've put up with it for this long, so a few more months I should be able to handle.

I'm schedule to return to the endocrinologist in late November. She wanted me to watch my weight very closely and look for being exceptionally tired. This would indicated that I may be going into hypothyroidism. I have gained eight pounds since the procedure and I'm holding at 161. My ideal weight before this all started was around 175. So 161 on a 5'11" frame is not overweight.

On November 18th, I experienced what turned out to be Atrial-flutter, and ended up back in the hospital for three days while the Dr. increased my Betapace medication to 120 mg twice per day. As I stated above, I was scheduled to return to the endocrinologist in mid November, but my appointment got cancelled. While I was in the hospital in November, the Dr. checked my thyroid and the TSH was at 30. I have now gone hypothyroid. I have since started on medication (Synthroid) to replace the thyroid hormone, but it will take a couple of months to get to the correct dosage.

I still wasn't feeling good on December 13th, the day of a visit to my cardiologist. After complaining to him about a pain in my right side he set me up for a 24 hour holter monitor. The results showed nothing, other then a short run of a-fib. I did ask the cardiologist if the high TSH of 30. could cause abnormal heart rate including bouts of atrial-flutter. His answer was that yes hypothyroidism can case a slow heart rate, and that he didn't know if atrial-flutter might be another effect, but perhaps it could. He just said I need to get the thyroid hormones under control. (Nice suggestion considering he's the one who prescribed the amiodarone, that has led to the destruction of my thyroid in the first place.) My cholesterol was also up, over 300, another side effect of hypothyroidism.

Where do I go from here? I have been at this for way to long with a lot of unanswered questions. I still have the feeling that amiodarone has been the majority of the problem. At this point in time one can only speculate that the damage has been done, and I can't see any improvement in the future. I've been off the drug for 1-1/2 years. I can just pray that my body will heal itself, as I have seen three different cardiologist, one endocrinologist, two general practitioners, a lung specialist, and no-one has given me a solution. I guess doctors do just practice.

Returned to the endocrinologist in January and my TSH was down to 6. She increased my Synthroid a little as the TSH is still a little to high. I return at the end of February for a follow up. With a little luck it will be with in the correct range. I can say that I have been felling much better over the past several weeks.

On my last visit to the endocrinologist my TSH and other thyroid levels, T4, T3, T7, were in the right range. I don't have to return to see her for a year, unless I experience a weight gain or have other symptoms of these levels being out of range. All I know is that one does not know how the thyroid can effect your every function and organ in your body, till you go through it. I have gone through a living hell for the past two years, thanks to this fine drug amiodarone. I still have days when I feel things are not right, but have for the most part started to feel better since this thyroid issue is under some control at this point.

Since the last update a lot has happened. I did pretty good till around June and then went back into A-Fib. I was still on Betapace but it had started to fail me. In fact it got to where no drug was working for me. I ended up back in the hospital for 8 days in July. The Dr's tried a cardio-vert and it only lasted about 15 seconds. I was then put on just about every drug to try and bring my heart rate down, from the 150 bpm that I was running since the first week of June. My bpm (beats per minute) would lower to around 110 for 20 or 30 minutes and then back up to 150+. It was taking a toll on my heart as my EF (ejection fraction) was down to 20%. I was having a very hard time breathing at 150 bpm and could not and did not sleep for five days. I think I came very close to cashing it all in at that time. Five days without sleep in itself is enough, but add the a-fib on top of that and the congestive heart failure with an EF of 20% and its about all a person can stand. As a last resort I had an AV-Node ablation done to control the heart rate. I already had the pacemaker so that made the procedure much easier. The process only took about an hour and I do not remember a thing during the ablation. They left my heart rate at 90 bpm for 30 days after that and have been lowering it down 10 bpm every 30 days till we get to 60. I'm currently at 70 bpm and have been for two weeks now. I'm starting to feel somewhat better but the EF was still at 20% on September 27th, 2001. So being short of breath has become a way of life for me, which is very hard to get use too. I'm still in a-fib and most likely will stay that way. But with the AV-Node ablation I no longer have the ventricular rate running crazy.

So to recap all that amiodarone has done for me. Well first I guess it controlled the a-fib for around 10 months. It caused me to become hyperthyroid and that in itself causes a-fib. I had to have the thyroid ablated. I went into atrial-flutter when I became hypothyroid till that was under control. I experienced sensory disturbance, shortness of breath/respiratory insufficiency without being in CHF. I had abnormal vision, visual halos, increased arrhythmia, rashes, which still surface today. And the ill feeling that being on the stuff causes. Plus the living hell for what has now become 2-1/2 years. So to sum it up. If I would have had the AV-Node ablation when I had the pacemaker installed in July of 1998, I would not have gone through what amiodarone has done for me. I would still have a functional thyroid. I may not have the CHF that I have today. As A-Fib can cause CHF. And I would still be where I'm at today without the functional AV-Node. Oh and plus the 80 thousand dollars that all this has cost in medical expenses. To bring this into perspective on costs. The 8 days in the hospital in July cost close to 60 thousand dollars in itself. And that included the helicopter ambulance ride of 30 minutes at a cost of $8,400.00.

I will say that I have been feeling much better over the past six months. I have pretty much given up on the doctor prescribed medications. The only thing I take is Coumadin to thin the blood due to the atrial-fib, Synthroid to replace the thyroid hormone for the non-functioning thyroid that amiodarone caused to need ablated, and Welchol to help lower my cholesterol. Welchol is not a statin drug like Mevacor, Pravachol or Zocor. And will not delete ones body of coenzyme Q10, dolichol and prenyl proteins. This link will let you read a bit of what these drugs are doing to us. Click Here. I also am taking the following:

Vitamin C

CoQ10

B Complex

Carnitine

Taurine

L-Lysine

L-Proline

Selenium

Colostrum

The Vitamin C I am taking comes in a powder form. One teaspoon added to water creates a sodium-free mineral water drink and provides 4000mg of Vitamin C, 365 mg Potassium, 145 mg Calcium, 55 mg Magnesium, 2 mg Zinc.

Your probably asking why am I taking Vitamin C and the amino acids L-Lysine and L-Proline, and in such great quantities. If you follow the links at the bottom of this page to the Drs Rath and Pauling sites, you will find the answers. All I can say is I started this treatment around Thanksgiving of last year, 2001, and I have seen a wonderful improvement. I'm feeling like doing things again. My shortness of breath is much less. I try to walk 2 to 4 miles everyday. I definitely am doing much better then when I was on the handful of medications that the cardiologists had me taking. What good are all those drugs if they make you sick and feeling terrible. The quality of life can be much more important then the quantity. Do you know what the 4th leading cause of death is in this country, USA, is? It is side effects of prescription drugs.

Well I returned to my cardiologist on January 10th of 2003 and had my pacemaker checked. At that time he wanted to do another echo-cardiogram to see how the heart was pumping. In January of 2002 I had an ejection fraction (EF) of 22%. A normal heart will have a 50% - 60% EF. Well after the technician did the echo she hurriedly ran off to get the doctor so he could look at the video of the results. He sat there at the machine and was just scratching his head. There was some comment about the heart size being smaller then what it was one year ago. He then looked at me and said he was having a hard time believing what he was seeing. He told me my heart was now normal. With an EF of over 50%. Now mind you I did not take any of their heart medications in this past year. No Beta Blockers, No Ace Inhibitors. No Nothing except the nutrients that I mention above along with some other items. I can only attribute the improvement to what I had been doing for my own health benefit. Besides taking the nutrients I try to walk several miles everyday, but find it hard to fit it in if the weather is windy or too cold.

A lot of the how much and what was trial and error. As for the what I spent many hours doing research and looking at the alterative things I could do to help myself. The doctors about killed me several time with their medications. I figured I might as well have a shot at it myself. I can say this, "I have not felt as good as I do today since the early part of 1998." I really noticed a big change after around 7 months of being my own Doctor and having started taking the nutrients.

If you would like to know just what I have been taking, and how much of each, to allow me to cure my Congestive Heart Failure I will make that information available. Just click here and you can read what I have been taking.

History

Now the Bad News

Some of the Problems:

This page was last updated on 11/05/07