About

I took Cipro twice, both for simple UTI’s.  The first time, I had some very mild, very delayed reactions that I did not recognize at the time as being related to the antibiotic, here.  The second time, a little over a year later, all hell broke loose within a matter of days, described below.  In my case, I was hit hard with that most unusual and unique body-wide severe tendon pain that only FQT sufferers know too well.  There is no other pain like it in the world.   Regardless of what other symptoms occur with FQT, the severe tendon pain that can occur, sometimes with resultant ruptures, is distinctive, idiosyncratic, and unique to FQ antibiotic use alone.   It is a hallmark of FQT.   When that happened, it wasn’t hard for me to recognize the antibiotic as the cause.  All I had to do was Google the symptoms and it became suddenly and horrifically frighteningly clear what I was experiencing.   It turned out my story was plastered all over the internet, thousands of times over.   I’ll never forget the horror that was washing over me as I realized I was learning about these reactions too late, after the fact.

Some people believe that there are no common patterns of symptoms among FQT sufferers.  But I disagree.  Indeed, it’s these common patterns of FQT symptoms that allow FQT victims the world over to recognize themselves.  Sometimes, as in the case with my acute second reaction, it’s super easy and obvious to recognize.  Other times, for those with the milder delayed reactions (as with my first FQ exposure), it’s much harder to recognize and can be beyond belief.  Indeed, had I not been hit the second time, I would have never recognized, much less associated, the mild, vague, and unusual symptoms I occasionally experienced as due to having taken an antibiotic, of all things, 7-9 months earlier.

Despite the widespread symptomatology that FQ victims can experience, in general, I tend to place them into five categories:

  1. Tendon problems: acute and chronic pain, tears and ruptures of any tendons in the body; systemic body-wide tendon pain.  Localized tendon pain, tears, or ruptures, such as in one or only a few tendons, Achilles or otherwise, can occur in “milder” cases of FQT.
  2. CNS reactions: severe pain and intracranial pressure, facial neuropathies, including “ticks” and “twitches”, a feeling of “tightness” across the face and eyes and sinuses along with dryness, ear pain and pressure, anxiety, feelings of panic, depression, depersonalization, “brain fog” and memory problems, auditory and visual hallucinations, partial or generalized seizures, suicidal ideation. I also include Autonomic Dysfunction as a part of these CNS symptoms of vertigo, disorientation, balance issues, ear pain and tinnitus.
  3. Peripheral neuropathies: burning, stinging pain anywhere on body, but often in legs and feet, hands and arms, or face; feeling of “water trickling” or “bugs crawling” on skin; “electric shock” like pains shooting throughout body; facial pain and numbness; muscle twitching and jerking.  Neuromuscular weakness, of the legs, diaphragm, eye muscles, esophageal muscles making walking, breathing, eye movement, and/or swallowing difficult often accompany these neuropathies; generalized neuromuscular weakness.
  4. Cardiac: arrhythmias such as bradycardia, tachycardia, heart palpitations, pounding; feeling of “tightness” in chest.
  5. Ocular: dry eyes, painful eyes, blurry vision and vision disturbances, floaters, retinal tears, and a funny kind of “disorientation” along with the pain in vision.

Most FQ victims will experience symptoms in one or more of these categories.  My symptoms covered all these typical categories and more.    There are also plenty of published research studies confirming the adverse effects of FQ’s on each of these categories.    Simply do an internet search, or PubMed search, on “Fluoroquinolone + [whatever category/symptom] you are interested in.  Over the years, I ended up exploring “Additional Mechanisms to Consider“, and organized some of these references by topic and known mechanisms, here and here.

I don’t take the idea of taking thyroid hormone medication lightly.  Both times I did so, it was only as a very last resort.    Both times I did so, it brought me back from the brink of death.   My symptoms improved both times – despite the fact my serum TSH and T3/T4 values were normal before starting on the medication.

Here is my story.

 

In March 2010 I took a few days worth of the antibiotic Ciprofloxacin for a simple UTI and began my descent into hell.  I was a healthy, athletic, self supportive, active person working in a moderately physically demanding profession as a veterinarian.  Vet med is a little different than human medicine, in that it’s pretty “hands on” for the vet.  It was often me slinging that 70 pound dog up on the X-ray table and holding him down trying to get a radiograph, wrestling with him on the floor trying to get a blood sample, and dodging flying teeth at 3 am when it was just me and the owner present when I worked overnight emergency alone in a rural clinic.  I didn’t sit in an office; I worked on my feet all day.  As far as anyone knew, I had no pre-existing conditions within myself or even my family history to hint at what was to come.  I had no allergies, was not infection prone (I’ve never had a sinus infection or the flu and only 2 UTI’s 30 years apart before taking the FQ), no co-morbid conditions, never did any illegal drugs, worked out regularly, have always been thin, ate organic when I could afford it, and although not an extremist, was your basic average joe “health nut” and in great shape for a 50 year old person.  The day before taking the antibiotic, I could have gotten on my bike and ridden 50 miles.  Five days and a few pills of Cipro for my second simple UTI in my life ended all that.

Day 5 I was hit with a bizarre extreme fatigue that I’ve never felt before, it’s not your typical “I’m tired” or “fatigue” type of thing, but almost like a weakness, like my muscles couldn’t respond.  I’ve heard it described as if one’s “battery is unplugged”, and that’s a good description. I could barely keep moving.  Day 6 the clicking and popping starting in my knees when I tried to crouch or kneel in the exam room while working with the big dogs; I’d never in my life had any knee or joint problems, and between this and the weakness I felt “like I was a 100 years old”.  Day 7 the tendon pain started in earnest – in every tendon in my body.   This, too, is not like any pain I’d ever experienced in my life – it was not the joints, it was not inflammation, it was simply every tendon in my body started with excruciating pain made worse with the slightest use, movement, or pressure.  We’re talking tendons in my feet, toes, ankles, knees, hips, back and torso, shoulders, elbows, wrists, every finger, jaw, eyes, even the periodontal ligaments around each tooth seemed to hurt.  I could no longer vaccinate, grip a pen or syringe, do surgery or hold a dog; I could no longer stand or walk; with great effort I tried to hobble about with my weight resting on the lateral edges of my feet, and not bend my knees, eating was painful and left my jaws and teeth hurting.  During this time the “hot flashing” started – not simply typical hot flashes, but feeling like I was being hit by a truck from the side, almost knocked over completely, while breaking out into a complete sweat and feeling like I was going to pass out and collapse.  I remember standing in the room talking with clients, trying to support myself against the bench so I wouldn’t fall over, hoping they wouldn’t notice I was sweating and facing some inner unknown alien foe, about to collapse – and feeling how the tendon pain was worse simply because I been supporting my weight with my arms.  By Day 9 it was all over –  I left work early for the first time ever in my career due to feeling ill, and sobbed all the way home.  Within a few days, I was completely disabled and bedridden with severe, generalized tendinopathy, extreme muscle weakness and fatigue, muscle and tendon fasciculations and jerking, strange peripheral neuropathies in my arms, legs, head and face, extreme general fatigue, severe “brain fog”, hallucinogenic dreaming, severe headaches and intracranial head pressure,  severe ear pressure and pain, nausea, tinnitus, extreme hot flashes, dry mouth, dry, painful eyes and vision problems, heart palps, tachycardia, arrhythmias, panic and anxiety, and feeling generalized extreme weakness.  I was completely bedridden for the first 2-3 months or so.  I had to lay in bed with my arms and legs flat out straight because of the tendon pain.  I couldn’t type or use the computer, because every tendon in my fingers, hands, wrists, and arms were affected and severely painful.  I couldn’t hold up a book to read, because the weight of the book was too much and I couldn’t bend my arms, without increasing the tendon pain.  The weight of the sheets on my toes caused severe pain in the tendons there.  I couldn’t tell if I was asleep or awake; I’ve never taken LSD before, but I imagine it to be something similar, as I had these incredible vivid hallucinations or dreams day and night.  I had to be pushed in a wheelchair to attend doctor appointments.  It was months before I got up and was able to start painfully hobbling around in the house.

I went online and read story after story by other people who had the same symptoms and experiences I was now going through from taking this antibiotic.  There are no words to describe the horror I felt reading these stories.  It became apparent that my life as I knew it was over, I was in for a very long haul, and that I would be one of the lucky ones if I even recovered at all.  To say I was shocked and devastated would be an understatement.  WHY OH WHY didn’t I get online and read this information BEFORE taking that first pill, which hopefully would have resulted in my NEVER taking that pill at all?  It was the biggest mistake I ever made in my life.

But here I was, stuck in this situation, lesson learned too late.  After learning all I could online, I quit reading about it, stayed away from the stories, and decided to hunker down for the long haul.  My body had been healthy before, and I had to trust it would heal again.  I wasn’t going to end up like those people.   I decided I was just going to have to wait it out, and my approach would be to not do anything extreme in the meantime.   And this seemed to work.  Symptoms slowly improved to the point I was able to walk around the house and out to my mailbox by about Month 6 post, and many of the other symptoms had improved quite a bit too.  I started “stretching”, a millimeter at a time, until I was as limber as I had been before taking the antibiotic.  I didn’t have any tendon ruptures, which I felt rather triumphant about.  I figured at the rate I was going, maybe I could be back to work again at the end of a year.  With any luck, this nightmare would be over and I would have only lost a year of my life.

I was a little nervous as I entered the 6-9 month mark post antibiotic, because one of the characteristics of these reactions is a delayed set of “secondary symptoms” which can start during this time frame.  The reports I read said that if you developed some of these symptoms, such as dry eyes and mouth during this time, then it meant that your reaction was probably going to be much longer and much worse than if you didn’t develop these symptoms.  So I was aware of this, but I basically tried to push it out of my mind.  I think there was a bit of the mentality of “if I just believe it won’t happen, it probably won’t” going on.  But then in Month 7 post I discovered my glucose fluctuating between 50 – 250 mg/dl.  Contrary to my approach thus far, I really didn’t feel like I could ignore the high glucose readings I was getting and “wait this out”.  I made a drastic change to my diet in an attempt to keep my glucose lower, which in hindsight, I think may have been another big mistake.  At any rate, right on time, in Month 8 post, I suffered another acute flare where the dry eyes and mouth, CNS, neurological symptoms, and a variety of other symptoms started again in earnest.  The tendinopathy, which had been slowly improving at glacial speed, stopped improving at all, and in fact, reversed direction and felt like it was getting worse.   My nightmare into hell had just taken another huge jump into the depths of what felt like no return.

I had no idea of what was going on; no idea of why these symptoms were occurring and how or even if I had any control over them at all.  I’m not sure how I made it through the following 8 months, as symptoms continued to progress.  By 16 months post, I could barely clean the cat box without feeling like I had run a marathon, my heart absolutely pounding a slow and steady 60 bpm, except for when palpitations, tachycardias, or other arrhythmias would occur.  The CNS symptoms alone were incredibly painful and debilitating; the brain fog, the facial neuropathy, the ear pains, the severely dry and painful eyes, and the Interstitial Cystitis-like symptoms only added to the misery.  Peripheral neuropathies in my feet and legs and everywhere else developed; I felt sick and nauseous a lot of the time, I felt like I could hardly eat anything without my blood sugar all over the place, and the fatigue and physiological depression (on top of my situational depression) were substantial.  I was completely housebound once again.  A sense of impending doom, that I was dying, developed and I believed that indeed, I was dying and no one, including me, would ever know why.  This is because, like many other victims of this toxicity, all my traditional medical testing had been negative or within normal limits.  According to the medical profession, I was the picture of health on paper.

I made many of my final preparations during this time, as I assumed I was just going to collapse and die.  In the meantime, while scouring the internet information again, I felt like I started noticing some patterns between my symptoms and those of others.   For a number of reasons, I started wondering about a possible thyroid problem (which the medical profession had ruled out several times).   Throughout the history of FQT, there had apparently always been raging arguments about whether or not thyroid problems were being caused by the FQ’s.   One of the leading “evidence based” members of the FQ community at that time staunchly refused to believe thyroid issues were coming into play at all as a result of being floxed.  Consequently, without any available published peer-reviewed research or evidence of a FQ-thyroid connection, there existed the floxed faction who denied this possibility as well as and as vehemently as any mainstream medical doctor, effectively closing the door of thought on this option.   As a result, flox victims who believed a connection existed anyway, were driven elsewhere, mostly to other thyroid-related forums and groups.   I tracked a number of them down, some who said that they had improved or even essentially recovered with the help of thyroid hormone.   With nothing left to lose, I started learning all I could and tested myself.   I discovered I had all the antibodies for Autoimmune Thyroid Disease (AITD), although serum levels of thyroid hormone were within normal limits.   I had a university based endocrinologist, a traditional mainstream physician, and an alternative/holistic physician confirm the AITD just for the record.  And this basically brings me to the second half of this story, the beginning of my “Thyroid Hormone/Iodine” journey, and the reason for this website.

Getting on thyroid hormone was a life saver.  I didn’t know what was going to happen, but I decided to document my journey not only with my symptoms, but with lab values run every 2-4 weeks as well.   In this way, I hoped to correlate my symptoms with some internal markers.  Despite the fact that my serum levels of T4 and T3 didn’t change that much overall whether I was on medication or not, getting on the meds, and “shutting off the thyroid axis”, seemed to really help control the autoimmune component of it for me, and therefore, many of my symptoms.  Within weeks I was feeling much better.  I went from what felt like death’s door to walking again, riding my bike, and swimming.  I would say I was probably back to about 80%, and sometimes higher, of my pre-flox self during this time.  I felt rather triumphant, and, like many people who have “found the solution”, tried to tell other flox victims of my victory in the hopes it could be theirs, too.  Once again I had hopes that I was going to beat this thing, and maybe get back to having a real life again.  This was my first real indication that in my particular case at least, thyroid hormone alone had made a dramatic and profound difference in my floxing symptoms.  Naturally, as a result of this experience, I started questioning as to how much fluoroquinolone antibiotics caused severe endocrine disruptions, in particular of the thyroid axis.  It was obvious things had acutely and dramatically changed for me within days of taking the antibiotic, and now, after 16 months of hell, thyroid hormone alone had helped within weeks.

But there was still that nagging issue of the 10-20% of symptoms that were left, and some of them really bothered me.  Looking back, it’s easy to think I “just got greedy”.  I wanted that last 20% back.  I wanted to be 100% again.  In hindsight, maybe I should have just kept doing what I was doing, and learned to live with what I had, or maybe even that last 20% would have cleared up given enough time.  But here’s where my natural personality kicked in, because the truth is, I always want “just a little more”, out of myself or anything else in life.  And I’m sort of that kind of person that wants to climb the next ridge “just to see what’s on the other side” anyway.  I had a life I wanted to live, and it didn’t include living with these symptoms.  Thyroid hormones appeared to be the answer, but maybe I just wasn’t on the right type or combo of medication, or doing the “right” protocol.  There were any number of things I could try.  So I waited as long as I could, but when my recovery appeared to have reached a plateau, I became restless.  The siren called.  I wanted to be 100% again, and I had to try and go for it.  And you can tell where this is heading.  All I can say is, you win some, and you lose some.  But I certainly did learn a lot in the process.

Suffice to say I tried a few different things, some with catastrophic consequences.  I went up and down a few more times, and during the catastrophes, all my floxing symptoms returned with a vengeance.  This confirmed to me again the huge role that thyroid hormones were playing into my condition.  One of the things I decided to try was using iodine, either in the form of potassium iodide or Lugol’s.  And this is when it became apparent to me that iodine alone was playing every bit as large a role in my floxing or symptom experience as thyroid hormones were.  Both T3 and T4 had profound effects on my symptoms, but Iodine did as well.  Which brings me to the “Iodine” part of this website, and why I believe that my Iodine metabolism and homeostasis were messed up along with my thyroid hormone metabolism and homeostasis by the Cipro.

At the time I tried iodine, I was once again stabilized on a consistent dose of T4 and T3, and once again had improved quite a bit, but with some residual troublesome symptoms from my latest catastrophic mistake and plunge back into all my floxing symptoms.  It turns out that for some people on thyroid medication, if they increase their iodine intake by large amounts (such as milligrams), they’re forced to decrease their thyroid medication to avoid symptoms of “hyperthyroidism”.  This is not true of all people, but it was true for me.  I was one of those people.  This is actually a significant and important point to remember about my experience with iodine.   And though from a lay person’s perspective this doesn’t seem like such a big deal, it’s actually very very significant from a research perspective as well.   The way to think about this is to picture a good old fashioned see saw, with thyroid hormones (T3/T4) sitting on one end seat, and Iodine sitting on the opposite seat.  If one end of the see saw goes up (T3/T4), the other side (Iodine) has to go down.   And in the same way, if the “Iodine seat” goes up, the “T3/T4” seat has to go down.   So I’m going to say it again:  If I increased my iodine intake while I was on thyroid hormone medication, I would develop symptoms of hyperthyroidism unless one of two things happened.  1) I decreased my dosage of thyroid hormone medication, or 2) I decreased the iodine instead.  Most people would cut out the iodine (this is the logical choice), but I was as curious about this phenomenon as the proverbial cat.   I chose to decrease the meds.  And as I continued to increase the iodine and decrease the meds, some rather remarkable things occurred.  The last of my numerous residual symptoms were clearing up.  The peripheral neuropathy in my feet and legs cleared up 100% during that time, and my feet were actually warm too.  For the first time since my whole ordeal had begun, my CNS “head symptoms” were clearing completely, the heart palps and arrhythmias were gone, no more hot flashing/sweating, tendons and joints were fine, no bladder issues, no digestive issues, and most amazing of all to me were my moist eyes.  At times I thought I was crying, because it had been so long since I’d felt it —  but no – it was just that beautiful, precious, “liquid gold” called the normal tear film, that appeared to be coming back in all its original glory.   There was also a rather indescribable overall sense of “wellbeing” – both physically and emotionally.   I felt good, I felt “calm and quiet” for the first time in a long time, and I felt energized without the “adrenaline feeling” being involved.  The brain fog lifted to an indescribable clarity, and I got a much needed break from the encephalopathy-like symptoms I had been living with.  Lab wise, a significant drop was occurring in all the thyroid antibodies I measured, and antibodies were the lowest they had been since I started testing.

Sounds great, and like it’s the solution, right?  Unfortunately, all was not hunky dory.  There were other troubling issues that cropped up for me, and I wasn’t comfortable continuing with this little experiment for a number of reasons as a result.  However, there was absolutely no doubt in my mind after experiencing this that iodine alone, or perhaps the lack of it, was significantly coming into play with my floxing and thyroid symptoms.  It was a powerful experience, and one that I couldn’t deny, even if I didn’t know how or why.  Consequently, I spent a lot of time thinking about this, researching iodine and thyroid issues, and trying to make sense of what had occurred of both the positive and negative things I had experienced with iodine.   I was aware of some of the popular explanations for what I experienced, but I questioned these interpretations because I had objective lab data which contradicted some of it as well as supported some of it.  I ended up with way more questions than any answers, but one thing was quite clear to me:  iodine, T3, and T4, alone and the interplay among all three, had profound effects on all my floxing symptoms.

After coming off the iodine, I made another unintentional poor decision, which may have contributed to another massive thyrotoxic  flare, which added even more symptoms such as severe vertigo (complete with nystagmus), nausea, and migraine-like symptoms to all the other symptoms again.  The flaring was so substantial that I was forced off of all thyroid hormone medication and I became exquisitely sensitive to iodine again.   It’s understandable if you don’t follow why this is; all I can say is, you’ll have to read at least some of this website  to figure out why (Iodine  Basics and  T3/T4 Basics).   I now developed even more of the autonomic dysfunctions that plague so many flox victims, my CNS/encephalopathy symptoms were worse than ever, and I had all of my other floxing symptoms going on as well.  This was a horrifically miserable time period for me, both physically and emotionally, and I became essentially bed bound and non-functional for the greater part of a year as a result.   Believe me when I say that I was looking back at the seemingly halcyon days of my first thyroid hormone experience with longing and regret that I had ever gone for that “last 20%”.  The only somewhat good news was that I now felt I had a better understanding of how iodine played into my symptoms , and I could predict and control my symptoms somewhat effectively, even if only minimally, using tiny amounts (a few micrograms) of iodine at a time.

I was NOT on any thyroid hormone medication for about 2 years during this time.  And because I was not on thyroid hormone, and with the benefit of what I had learned so far, I was hoping that with the “right” supplements and diet, my thyroid issues would work themselves out, if just given enough time, and that eventually all my symptoms would clear up too.  My TSH and T4/T3 serum levels, as usual, were normal during this entire time, but once again, I was highly symptomatic despite this, and worse off than ever.  And, I continued to decline physically, not to mention emotionally.  I could feel it happening as time went on.    Still, I resisted starting thyroid hormones up again.  Taking thyroid hormones is not a decision to be made lightly; in my mind, it had been my last resort the first time around.  And now I knew that once I started up on thyroid hormone medication again, there would be no going back and that I would be on it forever.   So I really really wanted to give my body a chance to recover on its own.   The severe vertigo/Meniere’s-like symptoms had slowly improved over time, leaving me with chronic disorientation and balance issues, along with the other encephalopathy type CNS symptoms.  But I was pretty miserable, and towards the end of two years, I could feel that those symptoms were worsening again, and that it was only a matter of time before the severe vertigo was going to occur.

One thing I knew for sure – I was not going through another round of that chronic vertigo.  Vertigo was going to be a deal breaker for me, and I would end my own life before going through that again, or, god forbid, living with that permanently on top of all my other symptoms.   So I felt I was being backed into a corner again.  I was once again nonfunctional, and once again had nothing to lose.   I could feel that “pre-vertigo” creeping up on me a little bit more each day.  And the day I woke up with the all out vertigo again, was the day I went back on thyroid hormones.   I took a little T3 – about one microgram at night – and literally felt it “bathe” my brain cells and clear up the vertigo and many of the other encephalopathy CNS symptoms within an hour, providing almost immediate relief.  I may not have wanted to take thyroid hormones again, but there was nothing like the constant threat of vertigo that made sure I did it.

I knew I had declined quite a bit physically during the two years I was off of thyroid hormone.    And I didn’t know if starting up again on the meds would help me as much as it did the first time.  I suspected not, because by then, I was pretty sure that other underlying issues had progressed somewhat.  I also knew it was going to be a “rough ride up”.  Meaning, I was severely sensitive to iodine in any form, and that included thyroid hormones.  I increased my dose slowly, only a few micrograms at a time, taking just enough to stay ahead of the vertigo while not exacerbating other symptoms too much, until I reached my full replacement dose.  As of this writing, it’s been about 16 weeks since I started up on the meds again, and I haven’t had vertigo since.   It’s still in the early phase, so there could easily be continued improvement over time.  Taking thyroid hormones have definitely improved some symptoms, and thankfully, have also put a most definite floor on the emotional aspects of being floxed, such as the severe depression and mood swings I experienced without it.

Although this is good news, I still have plenty of other problems.  As predicted, I’m worse off than before the first time I took thyroid meds.  It’s become apparent that my floxing symptoms have progressed over time.  I have a lot more weakness, fatigue, and neurological issues, including the continuing CNS issues still going on.   It’s become apparent that starting thyroid hormone medication is “unmasking” other underlying issues (Addison’s, Myasthenia Gravis, Mitochondrial Damage, other, etc.).  I’m not walking for miles, swimming, or riding my bike this time, like the first time I took thyroid hormones.   I have to severely limit my iodine ingestion if I’m going to be on thyroid hormones, which means severe food limitations.    I don’t know if thyroid meds alone will clear my issues up over time or not – but I suspect not.  I don’t know if I’m worse off because I wasn’t on thyroid meds during those two years, or because I experimented too much with the meds when I was on them, or if it would have happened anyway, regardless of what I would have done.  There’s no way of knowing.  Right or wrong, good or bad, I only know the path I took.   And by taking that path, I learned some things about how T3, T4, and Iodine affected my floxing and flox symptoms.  If I’m worse off because I made mistakes along the way, then if nothing else, perhaps others can learn something from those mistakes.  That is what this website is about.

 

Fluoroquinolone Antibiotics and Thyroid Problems: Is There A Connection?   I wrote this for another website.  It provides an overall summary of what my website is about.