Update: December 2015

 

Update Summary:    After the last September update, I continued to improve.  This time, there were subtle, but very noticeable, regular “shifts” that seemed to occur.   I don’t know how to describe them, but something would “change” and it would feel like this change would “stick” more.   Sometimes there was a noticeable improvement after one of these “shifts”.   Other times, some symptoms would decrease or stop, but others might take its place – like extra muscle twitching, painful neuropathy, back pain with sciatica, carpal tunnel, fibromyalgia type symptoms, or increased tendon pain again.   I worked through these by continuing to tweak the regimen I was on, as described in the last September update, and the symptoms came and went, or waxed and waned.  The symptoms were tolerable – I had been through worse, in terms of severity, frequency, and duration – so I considered them minor setbacks.    But overall, there was no doubt that a real noticeable improvement was occurring.   I still could not walk, bike, or swim for exercise, and for the most part, I remained housebound, so the improvements I’m talking about don’t include getting back to a “normal” life.    However, in terms of pain, discomfort, and pure misery and suffering, my symptoms were decreasing as long as I didn’t eat anything new, didn’t attempt to exercise, or do anything out of the ordinary.   I also increased my statistical chances of being able to get to the store and shop for myself – several opportunities per week, instead of once every 4-5 weeks if lucky (CNS symptoms, balance issues, fatigue, muscle weakness improved enough on those days I could get in a car, drive, and walk long enough to shop).   I call this a “relief phase”, not a “recovery phase”.    However, anyone who has been severely floxed for any length of time learns to appreciate any relief from the chronic and unrelenting suffering these reactions can cause, so these changes were indeed, a welcome relief.

For this update, I thought I would go through the list of symptoms I discussed in “Book 1”.    To summarize my course of events again, the first time I was on thyroid hormone replacement therapy, I improved greatly in an overall sense, which I describe in the “About” webpage.    I would estimate at that time, I recovered to about 80% and sometimes higher, than when I was at my worst.   I then was OFF all thyroid hormone replacement therapy for about 2 years, and my flox symptoms worsened, and my physical health declined with even more symptoms developing than I had started out with.   I started back up on thyroid hormone replacement therapy in Dec 2014, so as of this writing, it’s now been about one full year being on TH.   I have continued to improve slowly during this time again, but have not improved anywhere near to the level of improvement I experienced the first time.

The following descriptions describe the improvements I have made since being on thyroid hormones this SECOND time.   Please keep in mind, that for some of these symptoms, they were either non-existent, or much improved when I took thyroid hormones the FIRST time, and I had a quality of life then overall in terms of movement, diet, exercise, etc., that I don’t have now.   These current symptom improvements from the SECOND time have occurred as long as I don’t eat anything new, don’t attempt to exercise, or don’t do anything out of the ordinary.  In other words, I consider this a “relief phase” and not a “recovery phase”.

 

December 2015 Update on Symptoms Listed in “Book 1” After Starting TH the Second Time December 2014

Tendons:   Estimate 70-80% improved depending on my T4, T3, and Iodine doses.   I am almost six years out from being floxed, and my tendons still react to T3, T4, and Iodine as I described in the link.   Most days, I feel like my tendons are the least of my problems anymore, as I have lived with some amount of tendon pain every day since being floxed in March 2010.

Frozen Shoulders:   Thankfully, I have not gone through full out frozen shoulders again.   I do experience a bit of residual shoulder pain which will fluctuate with my TH/Iodine levels.   Overall, I would say shoulders are 90-95% better than when they were “frozen”.   However, do keep in mind I don’t exercise or “use” them for anything beyond basic existence.

Muscle Weakness, Fatigue, and Tremors:    Estimate 40% improvement since my “magnesium setback”.   It’s been approximately six months since I took magnesium as described in my June 2015 update, and my thigh muscles remain extremely weak.  They’ve improved somewhat since then, especially since starting my potato consumption.   But in the past seven months, they’ve been weaker than they ever were since my acute floxing six years earlier.   The tiniest bit of increase in T4/T3 or Iodine will increase this muscle weakness substantially.   The smallest amount of magnesium, such as what occurs with my Epsom salt baths, also increases this weakness substantially.    Although my thigh muscles feel it the most, my diaphragm muscles and upper esophagus seem to be particularly susceptible as well, meaning breathing and swallowing are at risk.   As I’ve described in my previous updates, a reasonable hypothesis is that this seems to be an ACh-related symptom; however, certainly other mechanisms that only further research could elucidate could exist.   The more I can lower my TH/Iodine, the less weakness I feel; however, I can’t lower my TH or Iodine any more than I have, or my CNS symptoms will increase substantially.    So, I’m pretty much “locked in” to my TH/Iodine dose, and, as I described in the other updates, have stopped all magnesium supplementation except for a little bit of Epsom salt in a bath every other day.   I’ve continued the Epsom salt bath because it does help with my symptoms in the immediate term on my “high iodine” days.   But I know I’m doing this at the expense of this muscle weakness.   I’m not sure what happened six months ago to cause this extreme sensitivity to even the slightest increases in TH/Iodine and Magnesium.   But it seems my neuromuscular issues, whatever they are, took a turn for the worse then, and so far, it doesn’t look like I’m going to recover much from this.   So this may be a new permanent symptom.   I estimate maybe about 40% improvement so far since the “magnesium setback”.    The “burning” feeling – like a severe sunburn “from the inside out”, or “lactic acid buildup”, or “acid in the veins” – which is really a “burning” feeling in the muscles — has improved substantially.   This severe “burning” often is accompanied by a counterintuitive and paradoxical “ice cold” feeling, not only in the legs, but in the diaphragm area as well.   “Too much” TH/Iodine makes these symptom worse, as described originally.   I’m pretty sure a good dose (large dose) of iodine would clear up this “burning” symptom, but I know I can’t take that.   I still feel the “burning” symptom wax and wane throughout the day as I metabolize off the TH/Iodine, but I would estimate that overall, it is about 70-80% better.

Muscle and Tendon Fasciculations:    The same occurs as originally written.   Since I am keeping a tight control on my TH/Iodine ingestion, these symptoms are minimal.   I notice they will also increase a bit after I take the Epsom salt bath, which I take at night right before going to sleep.   Overall, not a significant symptom for me at this time.

Knees: the “Snap, Crackle, Pop”:    Estimate 80-90% improvement from when I was at my worst.   Again, I am not athletic at the moment, so that may be helping.   I usually only feel or hear this going up stairs when my TH is a tad high.

Extreme General Fatigue:    Estimate 50-60% improvement from when at my worst.  During this second TH phase, I went through an overall “severe fatigue” / “severe weakness” phase, to the point I felt like I had developed Chronic Fatigue Syndrome.    It took me a while to learn that just lowering my TH the slightest bit – a microgram or two – would relieve this considerably by relieving the weakness.   This symptom worsened considerably after my “magnesium” setback as well.    Although I still suffer from fatigue, it’s improved quite a bit by keeping tight control of my TH dose – not a microgram “too high” or “too low”.   Estimate about 50-60% better than when at my worst.

Peripheral Neuropathies:    Estimate 70-80% improved; neuropathies wax and wane depending on TH doses and my metabolism of it.   The “oro-facial” neuropathies are the worst for me, and occur in tandem with my CNS symptoms.   I went through several “shifts” during this second phase where the facial neuropathies worsened quite a bit around my jaw and temperomandibular joints in particular.   I developed shooting pains and overall muscle pain in my jaw like some kind of myositis.   Again, adjusting TH doses helped with this; additionally, I sometimes took a bit of temporary L-carnitine to “take the edge” off these symptoms instead (L-carnitine effectively lowers TH effects without needing to change TH dose).   Estrogen still affects these symptoms.   Although I continue to take estrogen, I am on such a small dose that it is non-detectable on blood tests.

Sweating and Hot Flashing:    Estimate 80-90% improvement.   Stopping the “flaring” has helped considerably in this regard, but is still highly affected by TH/Iodine.  It’s a given that after every dose of TH or Iodine, I will experience a “hot flush/sweating” 40-60 minutes later. I take this signal to mean TH has been absorbed out of my stomach and into the blood stream and I usually don’t eat anything until after this flush as occurred.   I sometimes will experience a milder form of this within minutes due to the T3 as well.   As I continue to learn more about this particular symptom, I now believe hypersensitivity /autoimmune reactions may be playing a part, as well as a couple of other diagnoses I’ve long considered, but haven’t been able to confirm yet.   I give some differentials for this symptom on the “Update: June 2015” page.

Hallucinations and Hallucinogenic Dreaming:   I haven’t experienced this since my March 2010 acute reaction.

Intra-cranial Pressure and “Headaches”:     Estimate 60-70% improvement.   This is still occurring in me.   It’s hard for me to gauge the improvement, because the symptoms of vertigo and overall “encephalopathy” are very much tied into the “intra-cranial pressure and headaches” symptoms.   The vertigo and encephalopathy has improved substantially, but I still experience the waxing and waning pressure differences as I metabolize TH/Iodine all day long.   I would estimate maybe about 60-70% improvement.    I still suspect fluid homeostasis to be a part of these symptoms.   This could be due to direct damage of water channels such as Aquaporins, or, I would put some kind of channelopathy high on the list for me as well.    Of course, FQ’s are suspected of disrupting GABA/Glutamate and any number of other receptors as well, which could also be contributing to these symptoms.

Trigeminal and Geniculate Neuralgia-Like Symptoms:     Again, these are often part of my overall CNS symptoms in general, as I described originally.   However, I would say these particular symptoms have improved about 60-70% from when they were at their worst – which is actually a huge relief.

Tinnitus, Ear Pressure, and Hearing Changes:    Estimate about 80 -85% improvement from when I was at my worst.

Hair Loss and Skin Issues (and Nails):    Estimate about 80% improvement in dry skin, no change in hair and nails.   I’ve managed to keep a full head of hair, but just barely.   I don’t think I will ever have the full, thick head of hair I once had pre-flox.    It is interesting how just a little excess iodine or T3 one day, will literally increase my hair loss substantially the next day.   The reaction is that quick.   I don’t want to suggest that iodine overall will make one’s hair fall out; in fact, in normal healthy people, I think iodine will help substantially with “hair health”.   I think there are probably a number of factors involved in hair quality and growth, with TH and Iodine being only two of them.   But in my case now, just a little increase in either will be reflected the following day with obvious hair loss.   For the most part, I think I’m “maintaining” now, and hopefully won’t experience any overall further loss, but only time will tell.   I also have hair again on my legs; for a long time, I lost about 80-90% on my legs.   As far as my skin goes, the “dryness from the inside out” has improved substantially, estimate about 80%.   I think hair and skin issues are affected substantially by hormonal status, and that’s something that’s suffered greatly in me, not only due to being floxed, but due to my age as well.   So I got hit with a double whammy there.   My nails are very brittle, and have severe vertical ridges on them.  They are brittle enough that they are starting to crack and chip at the edges at times.  Thankfully, I’ve never lost my nails, as some flox victims have.   However, I don’t think my nails are improving at all, and I do have a concern that they will continue to deteriorate.   The only other person I’ve seen with nails that look like mine died of breast cancer after undergoing a ton of chemotherapy.   I can’t help but feel that my nails are an indication of a common underlying mechanism in all this, representing some kind of keratin/epithelial cell damage, and that if they improved, many of my other symptoms would too.

Teeth: Pain and Deterioration:     For the most part, I don’t experience tooth pain.   But when I am having the “CNS encephalopathy” and neurological “oro-facial neuropathy” symptoms, sometimes my upper teeth (all of them, not any one isolated tooth), will feel “painful” (almost like a “pressure” feeling) along with the other CNS and facial neuro stuff.    Hopefully, the dental deterioration has stopped, although I can’t be sure of that.   There is no doubt my teeth are wearing down in a way they never did pre-flox.   I feel extremely lucky I haven’t chipped or lost a tooth yet.

Sore Throat, Painful Neck Swelling, “Choking Feeling”, Difficulty Swallowing, “Thick Tongue”, Cough:     Estimate about 90-95% improvement some days, but only 50-60% improvement other days.    In August of 2014 I suffered another huge “flare”, which I described on the linked web pages, and this is when these particular symptoms really became evident and problematic.     Getting back on thyroid hormone has helped quite a bit – but not as much as I had expected or hoped.   I still suffer with these waxing and waning symptoms today.   Sometimes I go days without these symptoms.   Other times, I can feel the symptoms wax and wane a little bit.   And sometimes, most usually when my T3/TH is a little too high, these symptoms can once again be very uncomfortable.   These symptoms seem to target iodine-secreting tissue:   thyroid gland, salivary glands, and lacrimal glands are highly iodine-concentrating tissues, and these are where I feel them most.   My thyroid gland is “shut off” because I’m on medication, so for the most part, it’s not affected anymore. But I really feel this now in my salivary glands (under the jaw, under the tongue), and with painful eyes, and I really feel this is contributing to the discomfort I feel with these symptoms.   It’s obvious TH and Iodine affect these symptoms greatly, but it’s also become apparent that other things I still can’t definitively identify are contributing.   I suspect “food allergies” and hypersensitivity reactions as playing a part; sometimes it feels like the lymph nodes in that area are affected – and these symptoms can wax and wane along with the “thymus/hilar lymph nodes” and all those symptoms as well.   Overall, I estimate about 90-95% improvement some days, but only 50-60% improvement other days, with these symptoms.

Phantosmia: That Chemical/Smoke Smell:     Estimate 95% improvement in this again.   This symptom is clearly TH/Iodine related for me, occurring whenever TH or T3 is too high, and when taking iodine in the face of normalized TH levels.    I also suspect it is “inflammatory /hypersensitivity /autoimmune” related as well.

Nausea and Stomach Pain:     Estimate 80-85% improved, often times is non-existent, but still occurs on occasion, which is why I’m giving it an 80-85%.   The fact that I’m no long “flaring” has decreased the nausea considerably.   However, I do believe “food hypersensitivities” are contributing to this too.   I also will feel this if I get a little too high on estrogen (I use topical estrogen, and if I use a little too much, I can definitely feel a little transient “morning sickness” type nausea).   “Stomach pain” is rare, but can be really painful and uncomfortable; fortunately, even when it does occur, it passes quickly.   I suspect food hypersensitivities are playing a part in this also.   One thing that has helped me a lot with many symptoms including this one, is to eat a little right before I go to sleep (I usually eat a little quinoa with a little burger or chicken).   There are a phenomenal amount of “diurnal cycles” going on, very active when we sleep, of all kinds of substances (hormones, neurotransmitters, amino acids, glucose, and probably thousands of others).   Pre-flox, I never ate right before sleeping, but I’ve found this one action to have helped me quite a bit in many ways, including with the “stomach pain”.

Cardiac Arrhythmias: Palpitations, Tachycardia, Chest Pain:    Estimate 80-90% improvement.    Again, these symptoms are HIGHLY TH/Iodine dependent in me.   Getting my hormone and iodine level “just right” goes a long way in keeping these symptoms in check.    I don’t mean to imply that these symptoms are only caused by TH/Iodine abnormalities; far from it.    Calcium, magnesium, catecholamines, neurotransmitters, other hormones, abnormal electrical activity, and a whole host of other factors can cause these symptoms.    However, in my particular case, they appear to be highly dependent on TH/Iodine, and I am controlling them for the most part using TH and Iodine.    I also take a little bit of topical estrogen, and this also helps with these symptoms.

Thymus: Pain and Inflammation:     Estimate 80-90% improvement as long as TH/Iodine are kept in control.   I also am on a very limited diet, trying to stay away from any foods which might be highly antigenic for me.   As of this date, I have not had a repeat CT/MRI or even X-ray to look for any potential masses in this area yet.

Interstitial Cystitis: The Great Imitator of Bladder Infections:     Estimate 95-99% improvement.   I’m keeping that 1% simply because the times I’m a little high on TH, or T3 in particular, I can just feel a hint of this.   I probably wouldn’t even notice it except that I’m highly sensitized to this symptom since going through the worst of these symptoms during this flox ordeal.

Glucose Abnormalities and Type 2 Diabetes:     Estimate 80-90% improvement due to diet and TH control.   I am still unable to exercise, which in my case, would help a lot.   Being the slightest bit “high” on TH will increase my baseline glucose.   If I overdo it on the potatoes I spike up to 170-180 and stay there for hours unless I can move it off (walk a bit in the house, do some resistance movements with exercise bands, scrub the tub for ‘exercise’, etc.).    Overall fastings range from about 85-95 depending on my TH status, and time of day (4 am dawn effect still occurs).    Over time, my thinking has changed quite a bit about trying to keep my glucose values super low.   It’s become very apparent to me that I need carbs – and when I say that, I mean it in a very, very serious way.   Some of my “encephalopathy-like” symptoms appear to be glucose, or at least, “carb” related.   These encephalopathy symptoms started in earnest when I switched to a low carb paleo diet.   Look at the list of symptoms for hypoglycemia, and I have plunged into almost every one of them within 30 minutes or less (barely cognizant enough to think and take action, and barely able to physically take action) – and literally pulled myself out of them within 15 minutes again — simply by grabbing and eating a cookie or something sweet.   The scary thing about these episodes is that my blood glucose readings on a meter are within normal limits – but my brain feels severely hypoglycemic , and responds incredibly fast with sugar or carbs.    These episodes can happen fast, and felt random and unpredictable.   I started making sure I ate some carbs every 2-3 hours and right before going to sleep, and increased my carbs in general in my diet again, and I am convinced this has helped substantially with some of my current improvement.    It’s helped me to keep on weight, but more importantly, helped with fluid homeostasis, ion homeostasis, and probably hundreds of other things that on a molecular level, depend on or are linked to glucose transport into and out of cells.   My overall blood glucose levels are a little higher than I’d like – but my blood glucose may not be representative of what’s going on within the cells of my brain.    FQ’s of course are known to cause severe glucose/insulin problems, both hyper and hypo glycemia, and this has been true of me as well.    As I’ve stated elsewhere, my flox problems appear to be a “homeostasis issue”, and that includes the glucose/insulin receptors and/or enzymes involved in glucose homeostasis.   Since the brain is a highly sensitive organ to glucose homeostasis problems, this may be why I’m feeling it there first .

Sun Sensitivity and No Tanning Ability:     I’m not sure anything has changed here, other than I was able to sit out in the sun for longer periods of time (20-30 minutes) during Summer 2015 while on TH, and I felt like I could tolerate the sun more (not as much burning in my legs afterwards).   I suppose I’ll find out more about these particular symptoms this summer 2016.

Painful Dry Eyes:     Estimate 80% improvement in pain, and maybe 20% improvement in dryness.   Both these symptoms continue to wax and wane with my TH/Iodine dosages.   Vision suffers (blurry) when symptoms are worse.   My eyes are still dry, but what I call “tolerably dry”.   STT (Schirmer Tear Test) is probably at about a 1-2 (should be over 10 and closer to 15).   However, this little bit of moisture makes all the difference in the world in terms of comfort and ability to simply function.   I’m down to using eye drops several times a day, (which is saving me a lot of money compared to when my eyes were at their worst).   Thankfully, although I have some floaters, these were never large and debilitating, as they can be in some flox victims (and risk of retinal tears are greater with increased /larger floaters).   As always, whenever all my other “head symptoms” flare, the worse my eyes are too.

Painful Eye Muscles, Disorientation and Vertigo:     Estimate about 80% improvement.    I have not had severe vertigo or BPPV since starting back on TH.   However, I still have waxing and waning painful eyes, as mentioned above.   And I still suffer from waxing and waning CNS symptoms, which can be very disorientating at times.

The CNS Symptoms: A Part of My Syndrome of Symptoms:     Estimate about 50 -60% improvement overall, mostly because the severe flaring and vertigo have stopped.    Although I do have times when these particular symptoms improve greatly (90%or so), it is usually at the expense of other symptoms (neuromuscular in my legs, cardiac, etc).   Meaning – what’s good for my head, isn’t so good for other parts of me, and what’s good for other parts of me, isn’t so good for my head.   I gave an example of this in a previous update, where I said that keeping my TH levels a little “high” really helped my CNS symptoms, but made the burning, weakness, and neuro symptoms in my thighs worse.   Lowering TH helped clear up these symptoms in my thighs, but brought on some of the CNS symptoms again.   The same could be said for my blood glucose levels – keeping them a little higher seems to help my CNS symptoms, but overall in theory I would want lower blood glucose levels than I have. In other words, it’s been getting harder and harder to find a “sweet spot” for ALL my symptoms at the same time anymore.

 

Again, as I stated in the opening paragraphs on this webpage, I consider this a “relief phase”.   Looking at the percentage improvements I’ve given, it can look like I’ve improved more than I really have.   These percentages represent symptom improvements which have occurred as long as I don’t eat anything new, don’t attempt to exercise, or don’t do anything out of the ordinary.    In comparison to my pre-flox life, or returning to being a fully functioning human being:    I would probably halve these percentages.

My entire day still revolves around attempting to “maintain homeostasis” enough to keep symptoms tolerable.    Quality of life status:   upgraded to “Poor”.