I survived this ordeal inorder that no one else would suffer what I did at the hands of doctors that have been given a quick cookbook approach to the illness. If I can help you by telling my story, then all is not lost. I may have been the sacrificial lamb on the altar, but at least you can benefit from what happened to me.
I'm so glad that I finally noticed this thread. Thank you so much for posting your story!
I started treatment at the FFC in Pittsburgh in November of 2006. I, too, was given T3, but my dosage was ramped up. The problem was that there was no lab work going on to confirm that it should have been ramped up at all. It was all based on how I was reporting I was feeling. By late December I was on 100mcg, I believe. In early January 2007, I got up in the morning and felt my heart go into atrial fibrillation. I called the FFC, and they told me to stop my T3. The AF lasted for six hours and then abated. I didn't go to the hospital. I didn't even call my PCP, because I was embarrassed. He had been skeptical of the FFC treatment all along.
My PCP tested my thyroid levels, and my T3 was very high, my TSH was very low, and my T4 was so low it was listed as critical.
I was also getting pregnenolone at that time, but I'm not sure what the dosage was and am too lazy to look it up right now.
There is more to the Dr. Pierotti story, and I'll write another post shortly. I don't have the time right now. I just wanted to let you know about my similar, but much less horrific, experience!
My thyroid test results from my first visit at FFC in October 2006:
TSH 1.01 (in reference range)
T4, Free 1.2 (in reference range)
T3, Free 306 (in reference range, but Dr. Pierotti wrote "want > 360)
Triiodothyronine, reverse 318 (in reference range of 90-350, but Dr. Pierotti wrote "want < 90" and "thyroid blockade." This is the "reverse T3 test, I believe - not FDA approved)
My thyroid test results from 1/19/07:
T3 4.2 H (ref range 0.60 - 1.80)
T4 1.6 Critical (ref range 4.8 - 10.9)
TSH .062 L (ref range .350 - 5.500)
One month later, after stopping T3, my levels were all within the reference range.
Another thing I forgot was that Dr. Pierotti had told me to go off the T3 for two weeks after my atrial fibrillation episode, then to start back at a lower dosage. It was my PCP who told me to go off completely after the above test results. I haven't touched the stuff since, obviously!
Finch, you are so right it could have been you. This sounds exactly like what happened to me. However, I think you mean your TSH was critically low and your T3 and T4 were high. Yet, the F&F Center still continued to operate in this dangerous manner and they knew what the potential effects were!!!!! I am literally taken back!!! We need to talk!!!
Hi Kathi - yes, we do need to talk! I'll double check on those thyroid levels. I should've done that before posting. I'll edit if they were wrong. I just remember that something was critical. Digging through the papers right now feels too hard, but they're fairly close at hand, and I should have a chance a bit later.
I was not aware of the connection between pregnenolone and atrial fibrillation.
ETA: Kathi knows what she's talking about! Please see the edit in my previous post with actual test results.
Dr. Ray Sahelian of California says that pregnenolone at high doses is extremely dangerous and causes atrial fibrillation, from my internet research. ( I was started out at 100mgs of pregnenolone on my last (( third)) visit.) Dr. Sahelian claims that pregnenolone at low doses, such as below 25mgs is ok and does not cause harm. I was in thryoid storm at my last F&F visit. I couldn't stand noises of any kind and was so sick. No vitals were taken at this visit because they forgot!!!I had spent the month since starting his medicaiton mostly sick in bed. Before I went to him,I was improving little by little with high doses of vitamin C at bowel tolerance levels . This had gotten me off the couch and enabled me to start walking. He only wanted to give me a FMLA.( insurance coverage without pay even though I had nearly 100 sick days I could use) Actually he didn't even want to give me that, but didn't know what else to do. He totally misdiagnosed me as a hormone patient and I wasn't aware of that. This is after providing him with 24 pages of question and answers that would indicate without a shadow of a doubt I was ill with CFS. I had been in communication with Dr. Teitelbaum by email for a year and he knew I was not a malingerer. I also had 3 B-12 shots per day in order to get off the couch prior to coming to his office. Dr. Pierotti wouldn't talk to me on the phone after I called my employer. They told me to use my sick days because I had been an employee for nearly 30 years. I was really concerned that this expert was not going to allow me to take off work when I pushed myself to the point where I couldn't even stand up only a few months earlier. The secretary yelled at me for being a malingerer and told me if I didn't go back to work then, I would never go back to work. Little did I know she was right. I am never going back to work because they put me in severe cardiac heart failure. Try getting by with that when you have CFS.
I am appalled that the F&F Centers knew the dangers of what they were prescribing and continued on. I was there later than you were and they were still doing the same thing. Does that make this population concerned about the F&F Centers and their ways of treating CFS patients. I certainly would hope so. Are they so concerned with getting results that they would fill their patients up with dangerous levels of T3 thyroid hormone so one could function???? But at what expense to their body?????? We must look out for one another and if this is the only way to do it, then so be it. I was so concerned about posting this information and now I am so thankful that I did. We all suffer greatly to one degree or another. Why go to a facility that claims to have experts and become disabled as the result. We need to get this information out and I am so glad this venue exists for doing just that.
One thing I failed to mention, Finch, you never just get off T3 thryoid hormone without slowly tapering it down. This can cause a heart attack too, according to Medaus pharmacy and others that I have spoken to . God saved you from going through what I went through and that is a miracle in itself. You have truly received a blessing, which you never realized until now! But as I said, maybe I am the one who is to bring this news and information to the group. You have only cemented what I have raised as issues and I am so thankful that you finally replied to the message. I am still amazed at what the F&F Centers will do to get results. Unbelievable !!!!!
Kathi - I just checked, and the pregnenolone he had me on was 100mg. Of course, he never mentioned that when I had the atrial fibrillation episode.
I feel very fortunate, but also very naive that I didn't know until now how much I'd been mistreated. Also that I didn't question things more at the beginning. My experience with the FFC was somewhat similar to yours otherwise. After 6 months of him first slamming me with every treatment at once and then pulling them off me one by one as if I was getting better, I was not better at all. I was told I was in the 10% of patients that don't get better with their treatment but that they wouldn't give up on me. The rest of the story I've been intending to post in a new thread. My last visit there was in December 2009. I only stopped in one or two times a year so the new doctor could meet me and could keep prescribing the antibiotics I'm currently using. The antibiotic protocol is one I found on my own, and they were willing to prescribe for me. That's another story, though.
After my last visit, someone in the office had mentioned that since I wouldn't be coming back there due to their new pricing package policy, I might want to go back to Dr. Pierotti. I checked him out a bit and found out about the discipline against him in 2007. I also found out about the new clinic he's at, and it didn't look like something I wanted to get into at all.
I'm very glad to have this information from you before I post my experience with my last visit there. This sheds much new light on things.
I'm also feeling very devastated that this happened to you after my experience and that Dr. Pierotti did not learn at all. I guess since my episode didn't leave any lasting damage (that I know of yet), he may have felt he'd gotten away with it and that there was no harm, no foul? It's hard to say what he was thinking. He certainly should have known to be more careful.
This all makes me wonder how many other people have been harmed by FFC hormonal treatments and what their real track record is for patient improvement.
I'm going to send you a PM later so we can discuss this further. I'm so glad to have finally met you!
Kathi - just wanted to add my thanks. I've been reading this thread off and on, and am appalled at what happened to you. Also appalled because someone recently gave me Teitelbaum's book, and I fell for it, he's very convincing. Maybe it was because I really wanted someone to tell me that he could make it all go away, no problem.
You and Finch have provided a really valuable service here. I hope at least Dr. Pierotti goes down. Why is it acceptable for him to do what he did, but not acceptable for us to be recognized as having a real disease?
Sunday, I would not throw the baby out with the bathwater, so to speak. There were some wonderful things I learned from Dr. Teitelbaum's book that helped me.The B-12 shots were invaluable to get me off the couch. Two weeks before school started in 2006, I started the shots and made it back to work. But using the B-12 shots was not a panacea, as I had expected. The illness not only required the B-12 shots, it required that I take off to get well. I had no idea how truly ill I was and overdid when I should have stopped pushing. No one told me this one point that may have made the difference in my illness. Thus when I finally did leave my job, I could barely stand up, let alone walk. Your age plays an important part in getting well. Even Dr. Cheney has seen that the under 40 crowd has more resilience in fighting this illness than the over 40 crowd. Perhaps the XMRV virus has polluted the DNA more.
At least I had Dr. T's book when my PCP knew nothing. BUT the manipulation with T3 thyroid hormone is extremely dangerous. The F&F Cneters knew this and didn't adhere to warnings by other researchers. This is where the problem lies. It is my understanding that all the CFS researchers get together and compare notes each year. Why are they not listening to each other with more due diligence??????If one reports that the heart is affected, then why don't they all listen and expect that the heart could be affected. Petersen and Natelson reported the sicker you are , the lower the EF from a NIH funded study, If I get it ,why don't they?????The heart is full of mitochondria. Why wouldn't it be affected and why wouldn't high doses of T3 thyroid hormone be critically dangerous to the heart??? Does it take a rocket scientist to figure that one out????? Would I be in heart failure if they had?????
Finch, with the knowledge that the F&F Center's treatments were causing possible atrial fibrillation, you would have thought they would have altered their course a long time ago. At least they should have been very cautious in their usage of T3, at the very minimum. Testing for levels monthly to see if a patient's thyroid numbers were out of line or sky high, as yours were, would have been the minimum. If I can figure this out, why didn't they???? My values were within range when I started the T3. What were they when I was only on the T3 treatment for a few weeks and had the heart attack???? How high were they on 100 mcgs of T3 given all at once.????? In my desperation to get well, I trusted this Center and they let me down. I am in cardiac heart failure because they used a treatment that was dangerous. If I had died from the event, then maybe it would have been better. Death always brings attention to the topic.
This whole thing is a mess. We have been violated by our illness, violated by the lack of research at the CDC and then violated by inappropriate protocol by doctors treating this illness. Then when we go to get disability, we are violated again from a program designed to help suffering people. This whole thing is a mess from the get go!!!! So who is to blame???? I still blame it on the CDC. They dropped the ball years ago when the Lake Tahoe incident arose. Haven't we as a group suffered enough human indignation, lack of understanding and other untold indignities!!!!! We for so long, until WPI and Dr. DeFreitas , had to convince the medical world we were not suffering from psychological problems. Two parents had to develop their own research facility, such as the WPI, to discover the cause of this illness. Cort and Dan had to spring from their own wallets to get these sites up and running, so we could communicate with one another. Thanks to them for digging deep in their souls to offer such wonderful support group filled with information, social support and news. Then there are other yahoo groups that serve similar purposes. Thanks to all those people who have valiantly struggled for CFS activism over the years to make our lives better. We have had our own revolutionary war going on here for so long. Perhaps some day we will see the sun in all of this. Life isn't fair and life isn't just, but we must still work through this all together and united if things are goign to change.
Dr. Teitelbaum emailed me yesterday explaining why they use T3 treatment for fibromyalgia. ........................................ ( I emailed him because I knew he had been warned about T3 being potentially harmful from Dr. Cheney.) When I read Finch's email ,I had to ask why they were still using a potentially dangerous treatment protocol when patients were struggling with very significant side effects. I wanted to know his thoughts.
Dr. Teitelbaum wrote................................I encourage you to read the book The Metabolic Treatment of Fibromyalgia, which goes into detail on this treatment and the science behind it. For more information on the treatment in general, please see http://www.drlowe.com/
Hello here.......................I DIDN'T HAVE FIBROMYALGIA.I had the drop dead fatigue with Post Exertional Malaise big time and sore throats. So why is the F&F Center lumping everyone in the same category with their treatments, when it is very dangerous.
Dr. Wilson who helped to originate T3 treatment ,was responsibile for a woman dying in Florida from a heart attack using T3. It is my understanding that he was fined $10,000.00 and suspended for a year. Finch tells us she had atrial fibrillation as the result of the F&F Center's T3 treatment. I had a heart attack and they still didn't alter their course of treatment. They are acting as if nothing happened. I am thankful every day that Dr. Cheney had the courage to validate what happened to me. He had several experiences with this type of treatment during a residency program. Dr. Peterman and Dr. Natelson did a study funded by the NIH that indicated CFS could cause your EF to go lower, if you were really sick. So the heart is affected in cases of CFS/ME. The F&F Center never even requested my lab work from my PCP, even though I told them I had a stress test done, a nuclear thallium test done and an echo done. The first two came back normal, but the echo was borderline. Even though they knew they were dealing with dangerous treatment, they didn't carefully look at all the factors in my case. Is this the case for you as well?????? I trusted them, as most likely you do too. They were not out there in my best interest, as I thought. They have done nothing to change what they are doing nor be responsible in my case up to this point in time.
If Dr. Teitelbaum ever admits to their mistake and takes responsibility for their actions, I will be the first to let you know. But as of now, he hasn't and he knows what they did to me.
You need to be knowledgeable and this is what I am trying to do. If you are getting help from the Center, I am happy for you. If they are putting every CFS/ ME/Fibro case in the same treatment basket and expecting stellar results, it isn't going to happen. If they are slapping you with all their treatments at the same time, this doesn't work either. We need to adjust our supplements, medications etc etc on a singular basis. We are all individuals, with individual treatment needs. I am a living example of what this slap shot type of treatment can do to you. If I pulled out of this illness several times in my life, where would I be if they hadn't treated me???? I believe in my heart I would be back at work today. I researched and recovered from a twin twin transfusion pregnancy that nearly killed me. I recovered from this illness back in 1984/85. I have been persistent and diligent all my life in my health. All it took was one careless doctor and clinic to daunt my hopes for a future when I did everything right in my life, as far as my health was concerned.
Hello here..............I went to the F&F Center, not because I had fibromyalgia, because I had fatigue and I didn't have knowledge of any other doctor that knew how to treat CFS. His
I just put two and two together and looked at what I'm talking. My doctor has me on 100mg of Thyroid per day and 100 mg of Pregnenolone. My doctor also gave me cortisone but I was afraid to take it, so I didn't. BTW, my doctor ramped me up very slowly. But I don't think he went by tests. Teitlebaums's theory is that the thresholds on tests are wrong.
I am also on Fludrocortisone 75 mcg 1 per day and DHEA SR 50mg a day. But I don't think these are part of Teitlebaum protocol. Anyone know?
I think I'll talk to my doctor about how to taper off the hormones. Except I'm not sure about Fludrocortisone
Andrew, what kind of thyroid are you taking??? There is a difference between something that is comprised of T4 and T3, versus T3 alone. T3 CANNOT be regulated by the body, if there is an overdose. T4 can be regulated by the body. That is why T4 goes into reverse T3 and is not used. I was not given 15 mcgs, 30 mcgs and then slowly increased on an incremental basis, as the body tolerated. Dr. Pierotti just prescribed 100 mcgs of T3 off the bat. Dr. Teitelbaum warned in his books and papers that T3 should not be given at high doses (over 60mcgs) to those over 50. ( I was 54 at the time) Everything was done wrong at this Center and there was no excuse for supposed experts dropping the ball.I was given too much for my age, not properly ramped up slowly and not even listened to when I told them my medications were making me very ill.I was told I coudln't even use my sick days. At my last appoinment they reduced the T3 a bit, but it was too late. The LAD had too much strain on it from the high doses. I would have never had a heart attack, if the medication was slowly increased. I would never have an early death, if it weren't for going to the F&F Center.I will die early, that has been predicted by Dr. Cheney. The stem cell transplant could change that, but it will come out of my pocket and not Dr. Teitelbaum's pocket. Who has $25,000.00 for that and why should I pay it???? Dr. Teitelbaum and the F&F Center should pay that bill. The apex of my heart is NOT working any longer. Since that happened my heart will give out early according to Dr. Cheney. We are not talking about simple mistake here. We are talking about big time error that WILL SHORTEN MY LIFE. That is why I am on here hoping and praying that I make a difference in your life, if not mine. I stepped out with concern for you.
I believed Dr. Teitelbaum that the threshhold for thryoid testing wasn't correct. It is Dr. Teitelbaum that needs to adjust his thinking. Finch had atrial fibrillation and I had the full blown heart attack. If you have never gone through a heart attack and never had symptoms, you will never understand how excruciating the pain from this experience is.There is so much pain and you don't have a clue what is happening to you. You will never understand the whole catherization process that put in stents, when you didn't need them because they didn't know what to do. How many MI's do you think they see because of too much thyroid medication??? Do you know what it is like to wake up after the catherization process and have a nitroglycerine headache that made you think your head was exploding????? Do you know what it is like to not be able to walk, after you had started walking a mile once a week BEFORE coming to Dr. T's F&F Center???? Then you can't even put two feet in front of you because your heart can't take it???? When your heart has been damaged, such as mine, the pain is incredible. I had no clue what was happening to me because everyone said you could have knocked them over with a feather because I would be the last person they believed would have a heart attack.Then you come into the hospital and the cardiologist is concerned because your thyroid levels are off the charts and you tell him that is the cure for CFS. NO IT ISN"T THE CURE FOR CFS!!!! NOT AT WHAT I WAS GIVEN AND HOW I WAS TREATED. I WAS BRAIN WASHED BY DR. TEITELBAUM IN MY DESPERATE ATTEMPT TO GET BACK TO WORK AND GET WELL.WHAT WILL YOU TRY IN THE ATTEMPT TO GET WELL????I UNDERSTAND THAT T3 THRYOID MEDICATION IS VERY DANGEROUS IF BODY LEVELS ARE OUT OF RANGE. Dr. Cheney thinks your body has down regulated for a reason. It is trying to keep you from dying and Dr. Teitelbaum is revving it up to relieve the symptoms. The symptoms are there for a reason, according to Dr. Cheney.All I know is that what happened to me was not going to happen without the use of T3 thyroid hormone given to me by Dr.Pierotti at the F&F Center.
I will die early. My heart will give out because it is so damaged. Given I have CFS and heart damage, I have a wonderful combination for early death. This did not have to be. Isn't this illness bad enough without saddling me with a heart that is so damaged it cannot support its job any longer????? Then to have Dr. Teitelbaum tell me that he is sorry I am going through this. Hello.................you caused this because I believed in you. I believed blindly in everything you said. Sorry that is wrong. While there may be differences in opinion in the medical world, there are certain truths that can't be forgotten. When you are hyperthryoid, it can destroy your heart and cause a heart attack , as it did mine. Are you hyperthyroid going to the F&F Center and on the edge of a heart attack??? How would you know because they are not testing your thyroid levels????? You could be a walking time bomb. PLEASE FOR YOUR FAMILY AND FRIENDS, have your thyroid levels checked. Hyperthyroidism is a known producer of a heart attack. READ THE LITERATURE!!!My life's course has been altered by something that I was told by Dr. Teitelbaum. I believed him and I am suffering for it now. Will someone die from their treatments???? I guess death always raises eyebrows. Too bad I came back from nearly dying because it hasn't changed a thing. What happened to Finch didn't change a thing. If it had, I wouldn't be in heart failure now. Heart failure is serious. What good is a damaged heart that will give out early when you already have CFS???
I am not saying that you shouldn't be on thyroid if you need it, but please make sure your free T3 and Free T4 levels are within acceptable ranges. After the heart attack, Dr. Teitelbaum only monitored the free T4 ranges. I HAD TO TELL HIM THAT FREE T3 SHOULD BE MONITORED TOO. HE WASNT EVEN MONITORING THE FREE T3 RANGE , EVEN THOUGH I HAD A HEART ATTACK. I was on an armour thryoid, rather than just T3 alone. IF YOUR T3 IS TOO HIGH, YOU CAN HAVE A HEART ATTACK. EVEN THOUGH THE FREE T4 LEVELS ARE OK, THE FREE T3 LEVELS ( the ones that cause the heart attack) can be way too high. While Dr. Teitelbaum was monitoring my free T4 levels, my free T3 levels were too high. Please read and educate yourself before it is too late. I am not the doctor here, but I had to tell him to monitor the free T3 levels. Excuse me...........why didn't you know that?????
I have avoided doctors for most of my 32 years of CFS.
The one BIG mistake I made was last February, when I went to the Holtorf Medical Clinic and got prescribed hydrocortisone (HC) and T3. I never even got around to taking the T3, because I had such HORRIBLY ADVERSE effects to the hydrocortisone, that I quit seeing this Holtorf Clinic doctor before I even got to the T3. After 6 weeks on HC, I was having the WORST ANXIETY symptoms of my life. I was CRANKED UP and so agitated that I had to retreat to bed and do yoga breathing exercises most of the day to keep myself from going crazy. (This lasted for 2 months AFTER I was off the HC!) I also developed cardiac arrhythmia on three occasions, which I had NEVER HAD before, and which I was able to get under control fairly quickly---with acupuncture (I have some of my own needles at home--thank god!) and high doses of Hawthorne and magnesium.
When I called to report in and get help for the overwhelming anxiety, this doctor's response was: "Hydrocortisone won't cause anxiety. But it WILL cause psychosis." I could actually hear him rifling through some books as he talked to me, and I imagined he was reading this from a text. I laughed out loud. (I had payed $400 out of pocket PER VISIT for this stupidity!)
When I called the clinic a few days later, to report on my arrhythmia, I was told that it probably had nothing to do with the HC and referred to see a cardiologist. The doctor would not even talk to me on the phone! He had his secretary relay the message! So that was it! NO MORE doktor schmokter for me!
Prior to the HC debacle I was walking 2 miles a day, running my own errands and functioning a whole lot better than I was after the
M-F HC, which seriously OVER-stimulated my adrenals and then crashed them. It has been almost a year since I took that detour to hell, and I am still not back to half of the level of functioning I was at BEFORE I took HC.
The only doctor I am willing to see now is one who is totally holistic and works primarily with diet and herbs. But mainly I stick to acupuncture and TCM.
"DO NO HARM," (the first tenet of the Hippocratic oath) is more applicable to those who don't have the "license to kill."
Dreambirdie, thanks so much for sharing your experience. We can't be afraid to share the horrible things that happen to us in order to save someone else. That's the least I feel I can do.It has taken me awhile to realize that what happened to me may be permanent, but I do not let it have to happen to someone else, if it is in my power. That is why you may be hearing from me for a while on this site. I want to get the word out just like Teitelbaum advertises here and there about these clinics. Can you imagine back in 2007, I emailed Oprah because I thought she should get him on. He wasn't on her show, but he was on Dr. Oz's program. I hear you emailed these shows too. Now I am emailing them with the horrors of what happened to me, because the CDC didn't do their job.I feel like I am in the cave man age of medicine with what happened to me.
I ,also had a horrbile experience with hydrocortisone. I had two good days and then went down hill from there. In 8 days I was in bed with a horrible sore throat and high fever that would not quit. I told Dr. Pierotti about it and he said I was detoxing. Excuse me, did you bother to read the side effects from hydrocortisone????? The serious side effects are sore throat and high fever. DUH What part of that did he not understand? I spent 7 days in bed horribly ill from hydrocortisone and took myself off it. The doctor at the F&F Center didn't even know why I was sick. He wouldn't even email me back. What kind of medical expertise is that? It sounds like fast food medical type service. After putting an anecdotal record together of each and every day since I started their medications and getting sicker, Dr. Pierotti wanted me to go back to work. He said I was only entitled to a FMLA, even though I was so very much sicker. It was my fault because I was sicker. And he wouldn't even admit I was sicker. Outrage is not even sufficient to tell how I felt. Stunned, shock , disbelief, overwhelmed to name a few.This was an expert dismissing me and my terrible reactions from his medications. Sounds like you experienced the same thing. I immediately wrote to Teitelbaum and asked what kind of doctors did he have at his clinics. Dr. Pierotti emailed me and told me he had misdiagnosed me as a hormone only patient and made a mistake. DUH!!! What didn't you get from 24 pages of information I gave you. ???? The corporate center told me I called in and told them I was a hormone only patient, when I made the intitial call. NOT TRUE!!!! I had been using bio identical hormones since the early 2000's . I am up on the latest research. BUT I trusted someone who said the endocrinologists were 20 years behind the times.When it comes to thyroid issues, the T3 values of being hyeprthyroid are still valid. Teitelbaum did not heed the literature about hyperthyroidism causing heart atacks. I have numerous articles siting this phenomena. How intelligent one can be and so stupid at the same time. Doctors are NOT GODs.Teitelbaum may have money from the corporation to sell himself, but he is going to go down when news starts getting out if people are brave enough to tell their stories. I will do what I can and get the word out. Please help me pass the word around.
Dreambirdie, I don't think with moderators anything from me would get on that site. However, if someone else wanted to share a question about the safety of doing their protocol and see what Dr. T says, then that should be interesting.