My experience with AF and Thyroid

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Posted by John Codling on February 03, 2004 at 06:16:40:

My Experiences with AF and thyroid .

Greeting to you all, I have known Jack drum for nearly five years now and Jack has asked me to post to you all, my experiences with my AF and my thyroid problems.

I am not a member of this board so if you need to contact me I have listed my email at the bottom of my story.

I suppose it really all started in Christmas of 1994, I was 43 and had just moved into a new house and a new job. I am a telecommunications engineer and then working out in the customers premises, I knew that this job was for the young and although I really liked my work but it was very very time consuming and I never knew when I would be coming home. A position arose in our sales office as a sales engineer, so it was important for me to succeed. Buying a brand new house, also meant lots of work was needed, decorating new cupboards painting , gardening etc all time consuming and what’s more cash consuming. So I decided to do most if not all the work my self..

As I mentioned it was around Christmas 1993 and I was tiling the down stairs WC, I noticed that I became short of breath and found it difficult to go on. What was strange if I went to the gym the episode passed.. Oh I forgot to say I was an avid weight lifter and I was a regular to my the gym on a regular basis, at least three times a week. I did not take drugs or drink , I can count on my right hand the amount of occasions that I had drunk too much.


All seem to pass ok then my pressures at work continued, I was under pressure coming home at 10 pm then weekends working on the house. I taken aside by one of my senior colleagues and politely informed that I should slow down as you can always flog a willing horse.

Around the second week in June 1994, I started to feel as if I was walking on air and a pain in my left arm, slightly short of breath, I was certain it was stress and tried going to the GYM, which did slightly alleviate the problems. Then one day , June 17th 1994 my boss saw me holding my left arm and suggested to be on the safe side to visit my GP. To say a pain in my left arm would be incorrect, it was tightness in the upper forearm.

In England its almost impossible to see your GP, you usually have to wait two weeks for an appointment but you can walk in usually and she the practice nurse, this is a good way to see the Dr. if its deemed urgent,

The nurse took my pulse and the look of horror I will never forget. and she immediately got the Senior practice GP to come and have a look at me. I was wired up and the ECG was taken and showed irregular heart beat. I was rushed to A-E ER and put on all manner of tests and after the third day , I was informed that they did not think I had a Heart attack but something had flipped in my heart and perhaps it was a stress attack..

I had just won a holiday to San Francisco from my department for all the work I had completed and I wanted to make sure that this was not going to effect it,.

All through the holiday I got these spasms of shortness of breath, thumping heart and feeling very scary, panic attacks , the whole holiday was a ruin. My wife and I decided that further explanations were indeed needed and when we got back to England we made appointment privately with a local cardiologist to find out what was going on.
I was stress tested echocardiogram, blood were taken and all was found ok.
I still found that these panic attacks were going on, it was strange they usually happened in Costco of all places. I was given a 24 hour tape Holter test and that even came back as normal. Then the Dr suggested an event recorder, if you feel your heart having an episode you could place this on ones chest and record the episode.
One evening when I got home my wife was waiting for me and said that there was message to contact the Dr ASAP as soon as I got the message. I can still feel the sickening feeling going through me now, when the Dr said you have a Rhythm problem with your heart and you going to need drugs for the rest of your life.

I was put of, Diltizam. Three times a day, I then started getting this awful sickening pain in between my solder blades and that made me feel uneasy. The drug made my eyes go very blurry and I got very short of breath. Life became difficult for me.

I wont go into the next few months but I was referred to another Dr at my local hospital. Who said the Diltizam was a waste of time and flush these down the toilet and try Flecanide.

I was given a dose , I cant remember, what amount I went back to the hospital and said I felt awful and the back pains were getting worse and a ECG was taken and they said double the dose.

I became very poorly, I honestly thought I was going to die and wanted to, as well. I could not walk the length of the train to get out of the station and the pain in my back was so bad, all I wanted to do was sleep, sleep had become my best friend.
My wife now took control as all good wives do on these occasions,
And insisted on seeing the Dr. with me.

To my amazement I was informed that I was in Chronic AF and they were hoping that, Flecanide would revert me into NSR,
This was the first I had heard of chronic AF, NSR etc,
I was admitted hospital and cardio- verted, In the words of the Dr, my heart did not budge and he suggested that I remain in Chronic AF rate controlled. I was discharged and given Digoxin and said I was to enjoy myself. I cannot remember the dosage, I seem to remember 125MCR.

I muddled on for about three weeks my heart was fluttering and thumping and it was a terrible existence, I noticed that if I was asked questions challenged etc, my heart rate would go mad and I would feel panic attacks and it was just awful.
It was around January 1995 I was at an exhibition from work and my colleagues we telling me how terrible I looked. That’s all you need you feel terrible and all you need is for somebody to say to you that you look terrible as well. I managed to get to the London Train station but could not go on, I called a London cab and asked him to take me to the nearest Hospital as I thought I was having a heart attack.
This is where my guardian angel stepped in .
I was dropped of at a Hospital that was famous for heart problems but did not have an A-E ER. I sat of a chair and explained what was going on. As I said my Angel ,stepped in just as I being informed that I would have to another hospital , that I knew with a less than good reputation, a Dr passing asked what was going on, he grabbed my wrist, felt my pulse and in one minute I was in ICU, Intensive care unit.

All through the night they worked on me and with Drips drugs, I started to feel a little easier.

Next to me I had a guy who looked absolutely dire , he had this great big pipe protruding from his neck, tubes in his arm, groin a whole battery of equipment around him. You could only feel instantly sorry for him, when my wife came in early that morning, this guy started talking to her, and said that the staff had been working on me all night and he thought he would not see me in the morning. When Tania ,my wife told me that , I could not help a little chuckle as it was rum this guy look so ill and he thought I was not going to make it.

I was bought back to my senses, the Dr on the ward had said that they were worried that my heart rate was 180 BPM and he felt it had been like this for some time, there were worried that working like this in AF for some time may have damaged the heart and they were concerned that I been left like this to fend for my self. Luckily test they had taken through the night were now coming in and my heart was ok. But hey had to get the BPM in a normal range.

I was given Verapamil and 250MCR of Digoxin and Hepperin with a view of Cardio verting me again. Also there was a chance if my heart rate slowed down I may revert to NSR.
Needless to say the cardio version failed and again my heart did not budge. I was advised to go a new drug, that was the best in class Amiodarone.

I was loaded with the dose. 600Mg for one week, 400 for another then the maintenance does of 200 per day ( I think that was the dose. I remember taking the hospital letter to My GP and getting home to one of those nasty phone messages, The GP had some concerns with the treatment and would I male an appointment for my wife and I to see him.

At the GP’s office, he informed me that Amiodarone was a good drug but designed by the Devil. It may well work and get you back into NSR but there are very bad side effect on with this type of treatments and I cold only be on the drug for ten years when I asked why. he shocking replied, that I wont be here, it will get you in the end.

I suppose I was lucky, I n two weeks I got back into NSR.
I remember waking up and feeling different and my whole chest had eased, I could not feel my heart or hear it. I just felt right.
A ECG confirmed that I was indeed in NSR. My pain in the back had also eased.

For about 6 Months I felt well, then I went to Bulgaria for Xmas, (My wife if Bulgarian I had met her on Holiday in Pamporovo in 1987 ) and caught chest infection..
The chest infection got worse, I forgot to say, I am asthmatic and have been from the age of Five. I started Inhaled Steroids, only to notice that after three days I went in to AF then I would stopped the steroids I would return to NSR, My breathing got worse and for some reason , I must have been crazy, we went to Thailand for a holiday. I was covered in factor 40 sun screen and wore a hat, I had been warned to keep out of the sun but his was madness.

My breathing became to bad that my wife had to bang my chest to release the phlegm. Back home I was hospitalised again in chest ward. And The Drs did not believe me, that taking Amodarone and Inhaled steroids would cause me to go into AF, I also got terrible chest pains and felt poorly. I suppose this was the worst year of my life. I got so bad that they suspected me of not being in control and I was referred to a Physiatrist, who found nothing wrong and suggested that I should go on a monitor and prove what I was saying was correct. This duly done and sure enough after 20 mins of taking a puff of steroid I went into AF. And about three hours later my heart would return to good old NSR.
It was suggested that It must be the incipient in the drug that caused a reaction but I had enough by this time and asked to be taken off of Amiodarone. I have a theory of what this was and will explain at the bottom of this mail.

Around this time having pushed the system NHS to the limit in the UK and maybe making a pest of my self. I was referred to a Dr who quite bluntly informed me he was the best Cardiologist in the UK and may be the world. He had perfected a procedure of isolating a nerve that connect the Atria and Ventricle and inserting a pacemaker to get the heart beating in Rhythm. I would have signed up straight away but for my second visit from my Angel.

Out side of this guys office was a Dr who was training to be a cardiologist, at the time he beckoned me and pointed out that although this nerve would be cut I would still be in Chronic AF and I may feel worse. I know know this prodcedure as Pace and ablate.
My wife stepped in again and we duly took a second opinion from a Dr in Birmingham.
He suggested that I should carry on as I am as there was a Dr in France who was perfecting a treatment for AF that involved burning a circle around the Pulmonary veins, isolation the AF.
He went on this, French Professor had put forward that all AF emanates from the PV. But was not being welcomed by the established medical Drs as his thesis was radical.

I duly came off of Amiodarone and after three weeks my chest started to clear up and I could breath again. Also I could take Inhaled steroids but there was no reason to take this as my chest had gone back to normal.

About this time 1998/9 I had met Jack Drum and Ellen on the maze board. It was refreshing to find other suffers of this condition, I had started to educate my self, in the drugs name and their side effects and to my two big amazements, I was informed that the pains in my back and chest and I was the only one suffering from this in the world. This of course was not correct and there were other like me. Also there were Drs, Electrophysiologist’s EPs who specialised in these types of conditions. Arrhythmias and there were several type.

Atrial fibrillation.
Atrial flutter.
Ventricular Fibrillation.

Atrail fibrillation was the holy grail of these and there were at that time lots of money in research and drugs to try and fight this condition.
Also at this time I had made contact with Cardima a company whose mission was to try and fix the problems of AF with a Catheter. I corresponded with a very nice Dr in this company and was emailing on a continuous basis, he suggest that I try one of the Best EP in the country and he would try and make contact for an introduction.

In the UK its almost if not impossible to correspond with Drs either by mail or letter, its just not the done thing.. but here I am emailing this DR in California and the chairman of the company Cardima and they are trying to help me. Really and truly that left a nasty taste in my mouth regarding UK Drs.
I was duly introduced via a Dr in the USA to the top EP in the UK its sounds crazy but that’s how it is here.
He suggested that I be admitted to a London hospital and he would try to get back into NSR. He explained that my back pains were he believed the Atria stretching. And the shortness of breath he could not explain, the extreme tiredness was a side effect of the drugs and the AF as my heart was only working at 70% of its capacity.
Duly admitted and tried on every drug that there was for AF, he could not believe the side effects I had described but now in front of his own eyes he say them.
He also managed several time via Cardio version to get my heart into NSR , usually lasting only 24 hours.
He method which he teaches is to put one paddle on the back and one on the front of the chest , this was the heart is compressed back and front. Other hospital had completed this procedure with both paddles on the front of my chest.


I remember one Saturday afternoon he came and saw me and saying its no good, your going to have to try DOFETILIDE. A new and experimental drug and he would apply to Pfizer for permissions for me to try this therapy.
One last thing he wanted to try was Amiodarone again for three months just to see if I would revert to NSR.
This was my biggest mistake in my life.

After around a month on the drug I was in my church and I noticed my hymn sheet was shaking, my feet were trembling as well. When I got home my wife burst in tears as my whole body was shaking. I went to my Dr who thought I had become diabetic and took a blood sample, that night I went to the bank and noticed for some reason I had become over drawn, going through my bank account I notice there was money being taken out a couple of times a day and it was me.!! and the reason, for food and drink.
As you may have guessed I had become thyrotoxic.five time over the limit. I felt well, I had lost 28 lbs in two weeks. I was sweating buckets.

I was informed that this was putting a big strain on my heart,
And this needed to be sorted out asap.
For anybody with thyroid problems there are only two drugs that seem be available to stop the TSH to tell the Thyroid to stop making thyroxin,
These are and excuse the spelling Carbizamol and Propytyuracil all old drugs way back from the pre and post war era.

I found I could not breath on Carbizamol and duly put on PPU coupled with steroids I was in this from Jun 1999 until my birthday in September 1999 when I received a letter instructing me to attend a hospital in London for the removal of my gland.

The surgeon was mostly concerned about the size of his scar and said he had taken out many a film star thyroid and you would not realise the procedure had been completed. The Endochrononiogist (sp) and the throat surgeon both would thank me as I would take this little pill and carry with my life as normal and the EP would be able consider me for either and ablation of Doefetilide therapy’s the sooner the better to tidy up my gland and take it out. What’s more I would get free prescriptions in the UK for life.
The operation was completed in October 1999 the biggest mistake in my life. My guardian angel must have been on Holiday those months. I broke my rule and over ruled the my wife , who I must say always knows better than me and did not seek an 2nd opinion.

Almost immediately after the operation my Ep became concerned on my well being. My eyes were puffy and I had this inferno nasal drip and my body was cold inside. He was so concerned that he asked one of his colleague of his to look over me and she said this is nothing new in Thyroid surgery,
I learned to my despair that you should not have all your gland taken away as it produces not only T4-but the active substance T3 which your body makes but T2 T1 T0 and calciton. Nobody knows what T2- T1 T0 but they are there for a reason.

I also noticed that my right lung became itchy so much so I could not breath, Oral steroid cleared this up but I could not take Steriods for the rest of my life. After about six months I sort of got used to the nasal drips the infernal itchy lung and the dreaded cramps. All I found out later that was the symptoms of Hypothyroidism.
At this time my Guardian Angel was still holidaying and I got a note that Phizer would not let me take this new drug Doefetilide.

After waiting a year for the thyroid to settle down and now finding that I could not tolerate the drugs Sleep again became my best friend. I was good for sleeping on the train going to work sleeping for an hour on coming home and going to bed at 9pm, this was no life at all. At weekend it had gone from bad to worse, I would have a nap in the armchair only to wake up five hours later with a blanket over me. I had a terrible sense of guilt that I had married my wife put the children on hold and took her away form her country and friends to just sleep.

My wife and I and with the help of Ellen and several people on the tropica board wrote and pestered Pfizer, for what good it done.
I received a letter from them saying not to write to them any more I was not to get the drug,

Then my Guardian Angel must had enough of the holiday and some how Prof Camm got to hear about me and somehow put pressure on Pfizer and with in a week I was admitted to hospital for Doefetilide therapy the 3rd person in the UK to get the drug.

I was taken in to hospital in September 2000 and given a kidney test , a QTC ECG, That is the time the heart takes for the Artia to open and the ventricle to close or the other way around . I knew the ECG could not fall below 360 MS. If it did then there was a chance of Torsade du points a pro arrhythmia which can be fatal.

500Mg were initiated twice daily although I felt different no NSR I was cardio iverted and to my amazement I went into NSR but only for 20 mins. My EP contacted Pfizer and it was agreed to up the dose ot 750 mg twice daily and then on the second day a cardiversion was instituted. In the bed next to me in the ward was a RC Brother, I never got to know his name, he knew the anguish I was going through and asked he if could bless me . On coming out of the theatre, I saw this guy bending over me blessing me it was the most wonderful feeling I have ever had.

I was in NSR the first time for 17 months and it stayed there for two weeks, I forgot the nasal drip the itchy lung and the coldness and just felt so happy and the sleep syndrome went almost over night.
After about two weeks I went paroxysmal again In AF but not all the time. I went into AF for a solid 7 days and thought this is it I am never going to revert. The Dr said this could be due to remodelling of the Atria and he hoped once the heart settled down then my pattern of NSR would stabilise and the bout of AF would decrease.

I seemed to be able to function again dong things that I could not do stay up with my wife until 11PM and go out with her to the movies. My AF bouts, always seemed to attack me in at weekends as soon as I got home on Friday. I would just start to relax and then bang, the AF would hit me and not go back into NSR until Monday.
By January 2000 my AF was breaking though twice a week and my EP warned me that I may go back to Chronic AF and do not get too disappointed. Doefiltide is a good drug but no capacity at rhythm control when your in AF, boy you felt your heart bumping around and you get slight chest pains after a session

Just at that time at my local bus stop there was an Advert Fly to Bordeaux 40GBP return on a airline called GO, it was one of these no frills airlines.
I did not think anything of it until I mentioned it to Stuart a young Scottish lad I had met on the Tropica board and we had become AF mates, incidentally he was a Scottish soccer player who had played for his country but his career was cut short because of this infernal AF.
He mentioned this Dr In France , Prof Hassigure from Bordeaux France and the great work he was doing, for AF.. Prof H. had invented a new type of Catheter, it was like a small circle like what we used when kids to blow bubbles.

My AF was now breaking through three times a week and I knew that if It was not treated soon I would be back into AF permanently. I could not stomach the fear of sleeping and going through all that again.

I often get mails asking how you know if your right or ready for the MAZE or a PVA.

At this time if any doctor such as DR Cox or Prof H had come to my door and said John, we are going to do the Maze or a PVA right now but we feel you have a slim chance of not pulling though it , My reply would be and still is . YES PLEASE RIGHT NOW. That’s when you know your ready for any procedure.

My Wife and I took the whole weekend to compose a I page fax to Proff H explaining in Detail my problems. I got into work early that Monday and sent the fax. Thoughts of not getting a reply and what can I do next , as I had written to so many Drs here in the Uk and did not get any replies.
At lunch time a fax appeared on my desk saying what the procedure is and costs and would I like to book a bed. To be honest having been let down on many occasions I wanted to meet this guy first just to see for my self what he was like and with the help of a young French girl in my office we booked an appointment in his office in Bordeaux for February 2000.
Prof Hassigurre is nothing like a English Dr. he is small and one of the nicest down to earth people I have ever met.

He explained to me, that if AF was in the Pulmonary veins he would have a 99.9% chance of curing it. If there were spots on the Atria, then with the equipment at that he uses he could only give me a 50 % chance with an over all chance of a Cure of 30%.

He went on to say that he felt that AF emanated from the Pulmonary vein and they use to try and place a catheter in the vein and burn away the spots but this would come back in months or years and was a difficult procedure to complete.. He felt AF was a design fault at birth as the insulation material of the vein breaks down if usually fit people around the 40 years of age. This new Catheter eliminated all this as it isolated the Pulmonary vein and there was no need now to spot weld inside of the vein as the previous procedures had done.,
We booked up a bed in June 2000 and on the Monday, I was admitted to the Hospital Du Cardiology Haut Levic Bordeaux France.
The staff cannot speak much English and my wife with here phrase book, we got by. I will not go into too much detail about the procedure but just twp points.
I asked not to be too sedated as I wanted to see and feel the whole procedure for and if to get my own back on the AF that had caused me so many problems. The most uncomfortable parts are the initial catheter insertion in the groin and the actual ablation, you get this terrible gripping pains but it only last a few seconds.
POST procures I was violent sick on both occasions and threw up all over the place.
Also The first sign of Dr Shah putting the Catheter in my groin, and almost excitedly saying AF in a pulmonary vein and Pof H saying had he captured it on the scope. This will live with me for ever.
I had two procedures on the Monday then on Tuesday the AF thorough again and I was again Ablated on the Wednesday,
They found AF in all on my Pulmonary veins, two spots in my Atria, and two spots in the place that joins the Atria and the Ventricle.
Eight ablations in all. One thing that was strange , I thought I was awake most of the time and calculated that It took around 20 mins. My wife later stated that I was gone for nearly 6 hours on the first ablation and 5.5 hours on the second. Dr Jais had also found Atrial flutter and had ablated that , something I did not know I even had.

Recovery was slow for me, I found that I was having lots of ectopis episodes. I had 6 weeks off and went out every day to Mass just to get me out of the house. I found that I had terrible cramp and started to feel very depressed.. I had read somewhere that when getting over major trauma from the Heart you become very depressed. I sort of got over the whole episode in about Three months the ectopics had minimised and I thought now I can carry on with my life and forget about AF. I suppose I can really put to the back of my mond AF but I was far form out of the woods.

I had taken up Tha Chi three years early and was getting very good at it, but the cramps got to me and I had to give up. I also stopped driving for a while as I could not turn my neck, I started sleeping a lot and the depression go worse. I also started to put on weight and just looked awful. My itchy right lung would flare up and To paraphrase, I did not feel well.
My GP suspected my thyroid levels were playing up, I noticed that if I got a particular bad ectopic epode, an extra dose of Thyroxin would stop it in Ten mins.

All My bloods were normal and nothing was wrong I was told would I like to be referred to a Physiatrists again.
This time I did seek a second opinion and to be honest not much happened I was offered anti depressants, but nothing really new showed up. I refused the Anti depressants and just tried to muddle on.

The cramps became even worse, and I sought the help of the net and to my horror found endless web sites of tragic stories like mine.

I sought the help of a Dr. who is well recommended in the web pages, and for a while I felt ok. I was given T4 and T3 tablet, I started to warm up only to have this cold spot on my back,. I also found that at certain time of the day I got palpitations. My hospital went mad at me, My bloods were all high and although I felt well this guys was over dosing me with Thyroxin.
I have since learned the hard way that not only being relived of a high amount of cash but I was being poisoned along with it.

Strangely enough Stuart my Scottish friend had also had an Ablation and was cured of AF like me and was also reporting strange things like me. Cramps, persistent colds but he had no thyroid problems.

What is also sad, , is there are numerous Drs both here and the USA who use this method of over dosing on T3-T4 to get patients back to normal but it is dangerous to patients with heart problems.
Its called suppressing the TSH values to make patients feel well.

Two years have gone by and I feel none the better, I have put four inches on my waist, and I feel UUGGHH.
No problems with AF thanks God.

Then I noticed a n article on the WEB it was about adrenal exhaustion, they are small adrenal gland on top of the Kidneys that help regulate the body. If a patient has been ill for a long while these gland get exhausted and the symptoms are cramps allergies and a whole raft not unlike hypo thryoidisom. Also this article mentioneds severe reactions to other drugs.
Remember all the problems I mention earlier with drugs reactions.
Now I was so allergic, my itchy lung, still could not tolerate Steroids, and now vitamins as well. To be honest I thought I was going mad. The treatment for this is steroids for severe cases and high doses of Vit C high doses of multi Vitamins and exercise.
This is what got Stuart through but for me to no avail.

Late last year I am just getting by my job, that was now in jeopardy due to a down turn in the Telecomms market. And I felt like crap.
There was a conference in London of Thyroid patients like me and there was a South African Dr who was speaking who made sense to me.

I am going on a bit so to cut my story short he diagnosed me with the following.

Hypo thyroid, not rocket science as I have no gland.
Leaky gut, he took a blood sample and we both saw this under a microscope and saw Parasites that should be in my gut but had escaped through my stomach wall into my blood. It was explained that my tummy is like a sponge and there are holes that the drugs soak through, in my case the holes are too big. This may be why I am sensitive to drugs as they are getting into my blood stream too quickly.
Yeast infection, I had this made craving for Chocolate. This has since calmed down to be honest I don’t get this craving so much now.

Adrenal exhaustion.

To be honest I get good days and bad days I cannot shift any weight I have a lot more energy but still not right. I have been told it can take up to two years to repair the damage.

In summery,

I do hope my experience have been of use to you all. What have I learned?
I use to rush every where and now I take my time, I enjoy my wife, and my home a lot more and I treat life as enjoyment I do not take life seriously anymore.

I have also learned that all Drs are good but some are better than other. I remember being in hospital once and a Dr passed me and said hello and the guy in the bed next to me said he is very good.
A few seconds later another DR passed me by also saying hello, and this the guys next door exclaimed yea but he is better,

Also take a second opinion, never let anybody take anything out of your body until you have researched it on the net and asked questions. If you still not happy take a 3rd opinion.

Best regards to you all


John Codling Hornchurch Essex England

Johnccodling @hotmail.com
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