Edward R. Arnold. The Mystery Illness
Оригинал: ftp://ftp.ucar.edu/era/mi/MysteryIllness.htm Коротко: длинная история про субклиническую целиакию (непереносимость глютена, белка, который содержится в зёрнах пшеницы, овса и ячменя), а также непереносимость сои и молока (молочных продуктов). На английском.
The musings of a patient on the vagaries of medical diagnosis and treatment in America.
Key phrases: primary hypothyroidism, Hashimoto's Autoimmune Thyroiditis (HAIT), alcohol intolerance, Celiac disease, gluten intolerance, gluten enteropathy, combination T3/T4 therapy, anxiety, depression, insomnia, thyroxine (T4), triiodothyronine (T3), free T3 (FT3), free T4 (FT4), American Association of Clinical Endocrinologists (AACE), hair loss, amino acid therapy, HAIT anxiety syndrome, Hashimoto's Encephalopathy, epicondylitis, periodontal disease, spinal decompression, benzodiazepenes, Thyroid Stimulating Hormone (TSH) test, doxepin, mirtazapine, pyroluria, schizophrenic porphyria, Reverse T3 Dominance
If it is really true that nobody really wants to see a grown man cry, then certainly nobody would have wanted to hang around me near the onset of a long illness whose mystery would take over 17 years to resolve.
It began subtly and mildly in 1989, my 43rd year. I had just finished a long and exhausting malpractice suit on behalf of my daughter, an attractive, genetically-normal child who had contracted quadriplegic cerebral palsy in an avoidable incident of post-natal asphyxia which had radically changed the nature of life for my spouse and I. By the time 1989 rolled around, I was thoroughly exhausted and carrying a toxic load of anger directed at an incompetent member of the medical profession who had never learned the importance of state-of-the-art skills in a profession that literally has the power of life, death, and disability.
From late 1989 on through 1990, I experienced strange episodes of profound sadness, usually of one to two hours duration, that became increasingly disruptive to my ability to handle a job and child-care duties. Initially, these episodes seemed to come from nowhere. Later on, I found that playing certain pieces of music of which I was fond, would send me into such intense sobbing that I would be forced to pull over if this occurred while driving.
By the time 1991 rolled around, something was to be added to these periodic bouts with intense sadness. Early in that year, my daughter became very ill, keeping both my spouse and I awake at night for weeks on end. By the time the problem was diagnosed to be a dental infection and dental surgery was done, I had begun to have a sensation of "hollowness", as though I really weren't part of this world, most of the time. In late summer of that year, a series of events in which my subconscious had informed me that a friend had a serious illness, sent me into a final "dive": I simply stopped sleeping more than about 2 hours per night. When I first stopped sleeping, I soon noticed that even low-level use of alcoholic beverages would further interrupt sleep and throw me into a state in which I couldn't think of anything but how terrible I felt. This state of pronounced alcohol intolerance would continue for nearly 17 years.
The final blow came in November 1991, when I went into a completely disabling panic/anxiety attack that sent me to bed, cowering. I had no alternative but to seek treatment from the psychiatric profession. Unfortunately, the first two psychiatrists prescribed drugs which either had no effects, or had effects that seemed worse than the problem they were supposed to solve. The third psychiatrist, whom I stuck with for about 6 months, came up with a treatment plan that was partially effective (but certainly not restorative). I stayed with this psychiatrist until it became clear that his treatment was equivalent to Jefferson Airplane singing "one pill makes you larger, and one pill makes you small". I was being jacked up every morning by a toxic, activating SSRI anti-depressant so I could semi-function, and then dropped by benzodiazepenes every night into a non-restorative twilight sleep state.
In retrospect, the most amazing thing about these first three psychiatrists was that not one of them ordered any tests of my endocrine function. Treatment consisted solely of a series of benzodiazepenes, anti-depressants, mood stabilizers, and anti-psychotics, administered in a trial-and-error fashion that yanked my psyche and body chemistry around like a manic pit bull on a 2-foot leash.
Throughout the latter part of 1992, I transitioned to care with my primary-care physician, mostly because I trusted him more than any of the psychiatrists I had seen up to that time. He was able to stabilize me with one of the old tri-cyclic anti-depressants, doxepin, along with low doses of valium. Although doxepin packs a big morning hangover for many who use it, and has very strong anti-cholinergic effects, its ability to put me out at night helped me function satisfactorily for much of the 1990s, even at a dose as low as 10mg, taken once daily each evening.
In 1993 I consulted a highly-recommended psychiatrist, who was the first psychiatrist who actually looked at my thyroid function. When my TSH was measured at 3.5, without also checking my FT3 and FT4, that doctor concluded that thyroid was not my problem. Of course, standards of thyroid diagnosis and treatment have changed radically in the years since then. Under the new AACE guidelines, a TSH of 3.5 would now be suspect, because studies of patients with TSH over 3.0 have shown that most progress to hypothyroidism (i.e. TSH greater than 5.5). The new (2002) AACE guidelines, had they been written earlier, would have meant that further testing and evaluation should be done.
I continued treatment with doxepin and intermittently valium, adding the practice of meditation to help calm myself, up until the fall of 1997. At that time, I came back to my primary-care physician with the symptom of profound exhaustion added to the symptoms of insomnia, anxiety, and depression I had suffered with for years, to various degrees. Fortunately, my GP was suspicious of thyroid function, and found that my TSH was floating above 8. Since this was well above the old/traditional limit of 5.5, he was ready to start treatment, with T4-only replacement.
I began taking thyroxine (T4) shortly thereafter with high hopes. Initially, the treatment was successful: getting the added thyroxine into my system caused an immediate improvement in quality of sleep.
However, the use of T4 did not turn out to be an unqualified success. After use of T4 for about a month, it was apparent that use of thyroxine alone did not produce a full recovery. I still suffered from anxiety, and continued use of T4 was gradually increasing my level of anxiety.
In the meantime, hair loss continued. Several years earlier, I had noticed that running my fingers through my hair would produce an unpleasant sensation, almost as though the hair roots were tender. By the time of my 50th birthday, in 1996, I had noticed that my pillow was virtually coated with hair by the time I would remove it for washing. Unfortunately, nobody close to me, or my GP, reminded me that hair loss is a prime symptom of hypothyroidism. Like most males, I was ready to assume it was plain old male pattern baldness. By the time I was treated correctly and the hair loss stopped, I had pronounced thinning on the crown which was too advanced to correct itself in response to correction of the thyroid problem.
In 1998, I began experimentation with amino acids which was to last for almost 9 years. I found that use of tryptophan, 5-HTP, and GABA could reduce (but not correct) the worst of my symptoms. In retrospect, though, use of amino acids is a poor substitute for a well-functioning thyroid, as well as being expensive and inconvenient.
By the summer of 1999, I had reached a paradoxical situation. Experimentation had shown that my body needed on the order of 100 micrograms of thyroxine (T4) to keep my TSH down to a reasonable level; yet taking that much T4 was causing intense anxiety, requiring me to use strong sleeping medications. By late summer 1999, I had noticed another distressing symptom: my acute sense of hearing was being increasingly impacted by tinnitus. Evidently, the root cause that drove me into hypothyroidism, could also impact hearing.
It was soon after a household move in the spring of 2000, that I had a partially-disabling attack of severe epicondylitis (more commonly known as tennis elbow). It was obvious that my body was no longer able to handle the short-term stresses of the hard physical work required by a move. This obvious physical symptom, accompanied by increasing periodontal issues and continuing neurological/psychiatric issues, prompted me to seek other treatment.
In Sep 2000, I began seeing a prominent "metabolic" doctor (M.D.) who is well known for his treatment of the metabolic disorders of diabetics. This doctor has written a number of books related to dietary changes and supplements needed to stave off metabolic degeneration as one ages. I was switched to Armour thyroid, and began treatment with other hormones (primarily hydrocortisone in low doses to supplement adrenal function, and pregnenolone). I took an enormous range of nutritional supplements recommended by this doctor, and also made radical changes in diet, which I maintained for nearly two years. Unfortunately, nothing seemed to really work: I did not obtain substantial relief of my symptoms. A thyroid test in Sep 2001 still showed unsatisfactory results: my TSH was 4.7, and my FT3 was below the bottom of the normal range.
By the spring of 2002, I had decided I would have to take my care elsewhere if there were to be progress. After doing a brief telephone consult with a naturopath outside my home state, I began seeing a naturopath in my home town for whom I had obtained very positive recommendations via a web search. By March 2002, the naturopath had informed me that testing showed my hypothyroidism was due to anti-thyroid antibodies, i.e. my body was attacking its own thyroid gland. This condition is officially known as Hashimoto's Autoimmune Thyroiditis (HAIT). As I now know, HAIT is the leading cause of hypothyroidism. I found this discovery quite amazing; how come the three endocrinologists I had seen between 1998 and 2002, had not given me this information? I was started on Thyrolar (synthetic combination T3/T4) by the naturopath, because she said that my body's ability to make T3 may have been compromised by HAIT.
Soon after beginning to see the naturopath, I learned that Dr. Stephen Langer of Berkeley, CA might have additional information on the problem I had been having with thyroid hormone causing anxiety in a hypothyroid patient. I had searched for information about this syndrome in a number of places but found nothing; for instance, the well-known book "Thyroid Solution", by Ridha Arem M.D., contains no information on the condition. So, I consulted with Dr. Langer and as told that a small percentage of people with Hashimoto's are exquisitely sensitive to even low doses of thyroid. In fact, the condition is rare enough that virtually no GPs, and only a few endocrinologists, know of its existence. Apparently, it does not have an official name attached to it. I decided to refer to it as "HAIT anxiety syndrome", although there are a few doctors who refer to any neurological symptoms accompanying HAIT as "Hashimoto's Encephalopathy".
I began to feel a little better between Mar 2002 and June 2003. I'm not sure why the message about gluten grains had not penetrated before, but by June 2003, the naturopath reminded me again that she had seen a positive result to a test for gliadin (one of the two major proteins in gluten grains) antibodies in 2002, and that I really should consider removing gluten grains from my diet.
This recommendation was based on three factors:
1. I had antibodies to the protein gliadin found in wheat and other gluten grains such as rye and barley;
2. I had anti-thyroid antibodies which were over the threshold that defines HAIT;
3. Medicine really is an experimental science, and this experiment, in spite of its inconvenience, appeared to be worth a try.
In a numbers sense, the response of my anti-thyroid antibodies to the June 2003 removal of gluten grains from my diet was slow, but gratifying. My thyroperox test started off at 25, dropped to 19 within 6 months, 7 within 10 months, and became zero in less than 2 years. Although my antibody level was never extremely high, it became obvious that even a low antibody level, over a long period of time, can do the same damage as a high antibody level over a short period of time. I also theorize, although it cannot be proven, that the thresholds set on antibody levels (you have HAIT if you're over, and don't have it if you're under) are arbitrary and provide a false sense of security for those who are barely under.
I eventually concluded that the removal of gluten grains from my diet was not all that difficult. Because I am not a "classic" celiac who experiences symptoms like vomiting and diarrhea after using gluten, I didn't immediately worry about that last 1% of gluten. Also, the realization that removal of (mostly flour) gluten products from my diet would have a positive health effect in terms of reduced glycemic index, was a motivator.
My symptomatic improvement thereafter was not immediate. It soon became obvious that T3/T4 treatment is not an exact science, and the proportion of T3 to T4 needs to be closer to the human body's need, not the pig's need. (Both Armour and Thyrolar have the T3/T4 ratio of one part T3 for every four parts T4, typical of the pig's biochemistry.) For instance, in late 2003, my TSH had dropped very low, i.e. I had become clinically hyperthyroid due to excess T3 as revealed by a free T3 (FT3) test. I went through a couple more of these "yo-yo" episodes while being treated, which is a not uncommon event, because thyroid treatment is as much art as science.
Cost of treatment also became a problem. By June 2004, I began seeing a highly-recommended Physician's Assistant (P.A.), who was known locally to be very good at thyroid treatment, and whose clinic would accept my health insurance. I continued to see the naturopath, although at less frequent intervals, since my insurance (like most) would pay nothing for naturopathy. The P.A. and the naturopath did not completely agree on treatment methods, particularly the use of adrenal supplements (hydrocortisone and DHEA in low/biologic doses) along with thyroid supplements. However, they were both in agreement that I should continue to pursue combination T3/T4 therapy. So, I blended recommendations from the two for awhile, transitioning to T3 and T4 in separate tablets of Cytomel and Synthroid, so the percentage of T3 could be lowered. Within the following two years, as my anti-thyroid antibodies decreased, I would eventually find that convenient T4-only supplementation would become more (but not completely) satisfactory, because my FT3 and FT4 test results appeared to be showing that I was now doing sufficient T4-T3 conversion. At this time, I was not aware that most T3 testing did not discriminate between T3 and its chemical mirror-image.
I gradually transitioned off adrenal supplements during 2005 and very gradually increased my T4 supplementation over the course of the year. Finally, by Sep. 2005, I began to realize that I was beginning to feel better, but also that I was still not in perfect health. My sleep was not perfect; I had discovered what Ridha Arem M.D. has documented in the book Thyroid Solution: a return to the euthyroid state may not immediately eliminate all symptoms. After going to a small dose of the atypical anti-depressant mirtazapine, I improved some and stayed in a stable state for awhile.
By the spring of 2006, however, my sleep had begun to deteriorate again. In May, I tried acupuncture a few times, and bought a light-box, but could still not get relief. By the time summer rolled around, I was back in the naturopath's office.
An adrenal test showed that my adrenal function had gone almost to nothing. Clearly, there was a continual downward trend in adrenal function, shown by tests in 2002, 2004, and 2006. The naturopath contended that I needed to go back on Cortef (hydrocortisone) and DHEA to prop up my adrenals. That I did, but it did not provide much symptom relief.
By September, I was feeling really bad. The naturopath and her assistant decided that I should be tested for heavy metals via a DMSA provocation/challenge test. The test came back positive: significantly elevated level of lead, and somewhat elevated level of mercury.
Shortly thereafter, I started chelation therapy with the chelating agent DMSA. This was to continue for eleven 2-week rounds, into Feb. 2007. Although I had periods where the chelation seemed to be making me feel better, the result was not as successful as I expected. Three months after the chelation ended, a follow-up blood lead level test (non-provoked) would show an undetectable lead level, so it seems unlikely that I have a large amount of lead stored in bone.
In spring 2007 I was back in my thyroid doctor's office, and we discussed other treatment alternatives. Who in the area was likely to come up with new avenues of investigation? The result was a referral to see a "holistic" M.D. in March 2007.
Improvement thereafter was significant. On my second visit to the "holistic" M.D., he recommended that I do a urine test for the stress disorder pyroluria. The results came back positive, although not strongly so. He recommended starting treatment anyway, with a high-dose vitamin and mineral preparation. This preparation contains vitamins B6/P5P, niacin, and pantothenic acid, along with minerals zinc, manganese, and magnesium. I was skeptical, but had no serious objection to trying something that was highly unlikely to be toxic.
The result was that I felt close to completely well within three weeks. However, I started feeling worse after about five weeks. Because of my long experience with drugs, I had the presence of mind to consider that the very high dose of "pyroluria formula" I was taking, might be too high. Cutting back the dose brought me back to a state in which I felt calmer and slept better. Because my read-out on the pyroluria test was in the gray zone between no diagnosis and firm diagnosis, it seems sensible that I would not require a mega-dose. I was later to determine that my negative response to large amounts of the preparation was probably due to the high levels of pantothenic acid it contains, and eventually began supplementing the formula with plain B-6 and zinc.
To augment my treatment by the "holistic" M.D., I shortly thereafter began seeing a Certified Nutritionist he recommended. On the very first visit, the CN looked over my case history and made a couple recommendations. The first was to go on a supplement regimen designed to heal gluten enteropathy. That regimen included large doses of ground flax-seed, Metagenics' Glutagenics (glutamine/licorice/aloe), and mineral supplementation. The second recommendation was to do a trial elimination of dairy products, based on her previous observation that people with gluten enteropathy, often cannot digest dairy foods.
Going dairy-free turned out to be a positive step. Within a few weeks, I noted that my digestion was working much better. Based on this result, I was ready to follow more of the CN's advice. At our second visit, she recommended changes to my supplementation plan. She also noted that I am one of a few patients she and the "holistic" M.D. are monitoring to see if pyroluria improves with intestinal healing. The theory is that, when "pyroluria" is actually due to intestinal damage, the pyroluria will recede if the intestine can be healed.
These recommendations proved to be good ones. Within about six months, I noticed that I could skip supplement doses without negative effects. I also noticed that my previous sensitivity to dairy foods had disappeared. By the end of 2007, I was finally able to get my thyroxine up to a dose which should be therapeutic. However, as 2008 rolled around, I continued to have subtle symptoms, and continued to need mirtazapine, which reminded me I wasn't really back to normal.
It turned out that 2008 would be the last full year during which I "enjoyed" poor health. Early in 2008, I had been discussing my issues with a friend on the internet who had some of the same symptoms. He casually suggested that perhaps I should increase my vitamin D intake. About Feb. 1, I increased my D3 intake to 2000-3000 IU per day. A few days after having a blood draw in early March, my doctor's office called me in a hurry to say that my TSH was undetectable (had dropped below 0.015). Since I didn't change my T4 dose, it was clear that D3 had done something. Later research turned up the information that adequate levels of vitamin D are absolutely required for good thyroid function. In fact, the body's receptors for Vitamin D are in the same receptor class as thyroid hormone receptors.
At this point, I wasn't sure what this meant. I immediately went off T4 to dump the excess, then went back on at a lower level. What was going on? I just wasn't sure.
During this period my net-friend also said he thought I should give more attention to my magnesium level. I lowered my calcium intake and began taking up to 800mg of Magnesium Aspartate per day. Although it didn't "fix" me, I did feel somewhat calmer. I followed this with an iodine challenge test to make sure my thyroid issues had no relation to iodine; the result of 70% sufficiency seemed to rule out iodine as a problem.
When I finally went back to see my friend the alternative doctor in June, his response was to ask "How do you feel? Maybe you don't need the T4 and should just go off it." So I went off T4 and by the time late July rolled around, a test in my regular doctor's office was showing a TSH above 8.0, and I sure didn't feel well. For the rest of the year, I gradually increased my T4 dose, peaking at 100mcg per day, in the hope of feeling well. I also had checks done of my B-12, ferritin, and vitamin D levels. I stayed on 1000 IU vitamin D3 per day, and began taking an iron supplement to try to boost my ferritin a little higher than 68.
In fall 2008, my single-minded concentration on my thyroid issues had to take a back-seat to another problem I could no longer ignore. Since 1984, I had been having problems with back-pain that were sometimes nagging, and sometimes intense. The reason for this wasn't clear; I had never had a severe auto accident, or any fall more severe than falling off a bicycle. I had managed to treat this problem with visits to a chiropractor. After a severe pain attack in 2008, I finally decided it was time to thoroughly investigate what the problem was.
X-rays from multiple angles, and an MRI, showed a pretty messy situation. I had a herniation at L3-L4, and degeneration at L4-L5 and L5-S1. A visit with an M.D. orthopedist specializing in spinal issues quickly made it obvious that conventional medicine didn't have much to offer, and the probability of a successful outcome from expensive, life-disruptive surgery was low.
I finally elected to do spinal-decompression therapy with a reputable chiropractor who has a long record of ethical treatment. Three months of therapy were sufficient to produce improvement, but I still did not feel "cured". A fall or other jolt could cause pain and instability to return.
As I lay on the decompression table thinking about what could have caused this problem, the truth was soon obvious. I had already read that celiacs often have problems related to bone and connective tissue degeneration. It seems obvious now that hypometabolism due to thyroid failure stretching over more than 17 years, multiple endocrine deficiencies, and many years of severe nutritional deficiencies stemming from gluten enteropathy, are the culprits for this problem. Being under constant pressure, it is hard for the body to repair the lower back; under the conditions caused by gluten poisoning, repair becomes impossible.
As 2008 was coming to an end, a net-friend casually asked me if I had considered Wilson's Temperature Syndrome (or "Reverse T3 Dominance" as it is called outside the USA). I visited the Wilson's website, ordered the books, and studied the theory carefully. I already knew I had hypometabolism, because my body temperature tended to stay rather low, usually just over 97F, and sometimes even as low as 96.3F basal (upon awakening). But, a generation of doctors who had learned to make fun of the late Broda Barnes M.D. and his temperature theory, were in the habit of not noticing sub-normal temperature in their patients; or if they did, stating that it didn't matter. So, it seemed like the Wilson protocol, with low temperature a primary diagnostic prerequisite, might be worth a try. After all, I had tried what seems like almost everything else.
In January 2009, I went off T4 completely and began taking a combination of immediate-release and sustained-release T3 (triiodothyronine), along with a daily B-12 lozenge to blunt the "rush" from immediate-release T3. T3 is the thyroid hormone which the body actually requires. The fact that T4 is used successfully with many hypothyroid patients means that they have sufficient quantities of ferritin, cortisol, the deiodinase thyroid conversion enzymes, etc. Patients who don't have the correct biochemistry, suffer because their bodies convert too much T4 into Reverse T3.
The result of T3-only therapy on brain function was astounding! Once I had been off T4 10 days, and on T3 doses of 20-25mcg per day for a week, the brain fog and motivation problems I had had for nearly 20 years, simply went away. The conclusion was obvious: in addition to the glandular hypothyroidism I had acquired from the effects of gluten, I had "Reverse T3 Dominance", a (usually) stress-caused disorder in which the body converts too much of its T4 to rT3. rT3 is a compound which is the chemical mirror-image (reverse) of T3, but has no biological activity, other than to block thyroid receptors from receiving T3. The protocol described by Wilson is difficult; I went though one cycle of loading the body with sustained-release T3 and found it eventually produced hyperthyroid symptoms. It soon became obvious that, in addition to being difficult, there was much about the Wilson Protocol that was simply illogical.
Within a couple months after starting T3 therapy using the Wilson protocol, I learned it was possible to use only non-time-release T3 (Cytomel) with just as good results. I would finally work myself up, then down to twice-a-day dosing at 65mcg Cytomel per day. On this program, I not only feel energetic during the day and sleep well at night, but my weight finally dropped to where it should be (165 lbs.).
As my treatment progressed during the year 2009, I was to discover a totally serendipitous and welcome effect of T3 therapy. By June 2009, I became conscious that my back no longer felt as painful and instable as it had. This was proved in Sep 2009, when I was slammed to the ground in a freak mountain-biking accident. My back did not go into spasm, and recovered fairly quickly. By Nov. 2009, I was no longer having any back pain or instability.
That I still had lingering effects from celiac-caused degeneration, became obvious in Aug. 2009 when I had an osteoporosis evaluation requested by my regular doctor. He had become suspicious about whether the back problems were related to osteoporosis. The finding of bone density at 0.75 grams/square-centimeter in the neck of my right femur was clearly osteopenic, and very close to osteoporosis. This was not a surprising finding; I was expecting a problem. A saliva test of adrenal function also in August, showed that my adrenals were still awakening in the middle of the night. This is a common effect of previous long-term hypothyroidism, which can be expected to gradually get better, and it has: sleep quality was continuing to improve through the end of 2009.
In Nov. 2009, the chiropractor who had been administering my decompression treatments was amazed at my progress. He had thought I was "fragile" when I started treatment with him in Oct 2008, but was now amazed at the increase in leg muscle strength when he tested me on his table. He was definitely interested in what T3 had done to me ... and probably a bit disappointed that I no longer need decompression treatments!
Life finally looks good again!
Today, I religiously take about 65mcg of Cytomel each day, and will modify my dose until I'm certain that I've reached the dose that makes me feel the best. I also religiously avoid all traces of gluten grains in my diet; I do not want to risk further metabolic disruption. Like the co-author of the book "Dangerous Grains", Ron Hoggan, with whom I have corresponded, I have come to realize that our society's over-use of a glue-like, hard-to-digest and potentially toxic substance isn't just dangerous to the 1 in 133 people who have full-blown celiac disease; it can cause a poor quality of life for the 30-40% of people (source: enterolab.com) who have gluten intolerance. I have also come to the realization that, to those few who are unlucky enough to encounter the HAIT Anxiety Syndrome, you may never again feel as well as you did when you were young, unless you find a way to stop your immune system from waging war on your thyroid. And, the chronic chemical and emotional stresses related to hypothyroidism and malnutrition can shove your body into "famine" mode, where your body shifts to "Reverse T3 Dominance" and you feel terrible because of it.
Most of all, 17 years after it started, I feel as though a not insignificant part of my life has been taken from me. I was unable get joy or pleasure from life, I was unable to work effectively, and I was unable to be the kind of parent I could have been between my 45th and 62nd years of life.
I never imagined that I would be looking forward to the relatively advanced age of 62. However, given that I now feel better than I did at any time between the ages of 43 and 62, 62 looks like a good place to be.
Summary
In retrospect, the most important personal things I ended up learning about medical treatment from 17+ years of unpleasant experience are:
• Question conventional wisdom. Conventional medical wisdom treats symptoms, not causes. Conventional wisdom says you have to put medicine(s) in to make you better, when sometimes removal of something is more important.
• Be prepared to learn more than your doctor, because many M.D.s won't have training in the specifics of your illness, and most won't have personal experience with it. After you've found out all you can from the Internet, use a medical school library, or a medical specialty library service in a public library.
• Change doctors if your doctor is uncooperative with your wishes. In particular, if your TSH is above 2.5, and your doctor will not do more comprehensive testing (e.g. FT3/FT4, thyroid antibodies) and/or do a trial of thyroid supplementation, find another doctor. If you have had long-term hypothyroidism, you may be like me: you may have to push your TSH below the bottom of AACE's 0.3-3.0 range, to feel well. And, you may have to do T3/T4 therapy, or T3-only therapy to feel well. However, you won't be able to do that if your doctor won't cooperate.
• If your M.D. says a therapy is "fringy" or "controversial", and you aren't getting results, be prepared to use "alternative" medicine. But, be discerning and prepared to change "alternative" practitioners.
• If you need thyroid hormone and are gluten intolerant, make sure the brand of hormone you are using, is free of wheat starch or other possible gluten source.
• Exercise, esp. if you're gaining weight. Even if you are not yet well, exercise will make you feel better.
• Get tested for the major food allergens: gluten, dairy, corn, and soy. Be prepared to limit or eliminate them from your diet.
• Get tested for all known nutritional deficiencies. Try to do this in one "big bang". I fooled around for years, finding deficiencies one at a time. I should have gone to a nutritional specialist and found about all of them at one time.
• If you have psychiatric symptoms, e.g. depression, anxiety, panic disorder, etc., make sure your endocrine system is evaluated, with thyroid testing as the cornerstone. Beware of doctors who offer an antidepressant first thing, without endocrine evaluation. If endocrine support doesn't correct your problem, look for an "alternative" doctor who can do testing for other biochemical imbalances. If you have hypometabolism (low temperature), investigate all of the many other causes of low temperature, such as mercury poisoning, gut wall infection, etc.
• The emotional/psychiatric effects of hypothyroidism are at least as damaging as the physical effects. Unfortunately, many M.D.s focus on the physical.
• If your doctor diagnoses you as hypothyroid, demand that a test for anti-thyroid antibodies be done. If you have any antibodies, even if they are under the threshold where HAIT is considered to start, get testing for food allergies and common environmental toxins. You may find, as did I, that you won't feel as well as possible until you free your body from antibodies.
• Some of the problems of American medicine can be traced to its ineffectiveness, which increases cost for everyone. Although genetic pyroluria is not uncommon (10% generally, much higher in psychiatric populations), makes people feel really terrible, is easy to diagnose and treat, and was discovered over 30 years ago, many M.D.s have never heard of it. Even fewer doctors know that intestinal damage caused by gluten or other food allergy, can cause malabsorption that results in non-genetic "pyroluria". Because almost nobody knows this, they don't know that the pyroluria test is an inexpensive, effective way to check for malnutrition caused by intestinal damage.
• If you have gluten enteropathy and the nutritional deficiencies that go along with it, whether or not blood tests show you are hypothyroid, get tested for rT3 Dominance. Since rT3 Dominance is thought to be a famine-survival mechanism, there is a significant probability that your body will interpret your deficiences as famine, and turn up rT3 production.
• The co-existence of HAIT and pyroluria in my case, suggests a hypothesis as to why "Hashimoto's Anxiety Syndrome"/"Hashimoto's Encephalopathy" occurs in some people, but not others. Obviously, HAIT by itself causes some anxiety, since ridding myself of HAIT antibodies reduced anxiety related to administration of thyroid hormone. It seems a reasonable hypothesis that any of several biochemical syndromes that are known to cause anxiety, could add anxiety to that caused by HAIT. Certainly one of those is pyroluria, whose functional deficiency of B6 and zinc disproportionately affects the neurological system; it can cause anxiety and atypical/unusual reaction to drugs and hormones. Another one of those is hypometabolism, whether caused by "Reverse T3 Dominance", or something else.
• It is known that high oxidative stress can create food allergies (per William Walsh PhD of the Pfeiffer Treatment Center). Since pyroluria causes oxidative stress, it is a (unproven at this point) theory that my food allergies may have been worsened by co-existent pyroluria.
In addition to the many, basically personal things I have learned about health-care, there is a much larger issue. In all the financial expense and the glacial slowness of getting answers for my long-term illness, is there a lesson about the current American frenzy to "fix health care", and to lower the runaway cost?
In all the talk to date about health-care, there is very little mention of where the high cost comes from. But public-health experts know this: they have said that over 75% of the cost of health care comes from taking care of people with chronic illnesses and disabilities.
There are many examples of where chronic illness is fixable. Taking gluten poisoning as an example, it is now estimated that about 1 out of every 133 people has full-blown Celiac Disease, yet the Celiac Associations say 97% of these cases aren't treated. Arithmetic with these numbers results in a figure of about 2.2 million people in the USA who aren't treated. That dirty little number could easily translate into billions of dollars wasted in the healthcare system each year, and lives being lived below potential (or not at all).
Everywhere one looks, there are problems. Diabetes. Heart disease. Cancer. Many of these cases are not genetic, but rooted in poor food choices, other poor health habits, and environmental pollution. The modern "money changers in the temple" are those who lull us into buying cheap foods like gluten and corn syrup, and who dump a complex stew of chemicals into our air and water.
I am one of a lucky few who found answers, but it still took a ridiculously long time. The many in America who now are suffering from long-term, chronic illnesses don't seem to have registered in the consciousness of those who say they want to "fix" health care. Electronic medical records, or other high-tech tricks, aren't going to really fix the problem. Only a massive consciousness shift on the part of the American people in respect to their health habits, accompanied by a government effort to hold the health-care system accountable for poor diagnostic and treatment practices that prlong fixable chronic illnesses, could reduce the high cost of health care and make the system concentrate on what it should be doing: providing help to people with disabilities and genetic illnesses.
Edward R. Arnold
era [at] pobox [dot] com
4 Dec 2009
The musings of a patient on the vagaries of medical diagnosis and treatment in America.
Key phrases: primary hypothyroidism, Hashimoto's Autoimmune Thyroiditis (HAIT), alcohol intolerance, Celiac disease, gluten intolerance, gluten enteropathy, combination T3/T4 therapy, anxiety, depression, insomnia, thyroxine (T4), triiodothyronine (T3), free T3 (FT3), free T4 (FT4), American Association of Clinical Endocrinologists (AACE), hair loss, amino acid therapy, HAIT anxiety syndrome, Hashimoto's Encephalopathy, epicondylitis, periodontal disease, spinal decompression, benzodiazepenes, Thyroid Stimulating Hormone (TSH) test, doxepin, mirtazapine, pyroluria, schizophrenic porphyria, Reverse T3 Dominance
If it is really true that nobody really wants to see a grown man cry, then certainly nobody would have wanted to hang around me near the onset of a long illness whose mystery would take over 17 years to resolve.
It began subtly and mildly in 1989, my 43rd year. I had just finished a long and exhausting malpractice suit on behalf of my daughter, an attractive, genetically-normal child who had contracted quadriplegic cerebral palsy in an avoidable incident of post-natal asphyxia which had radically changed the nature of life for my spouse and I. By the time 1989 rolled around, I was thoroughly exhausted and carrying a toxic load of anger directed at an incompetent member of the medical profession who had never learned the importance of state-of-the-art skills in a profession that literally has the power of life, death, and disability.
From late 1989 on through 1990, I experienced strange episodes of profound sadness, usually of one to two hours duration, that became increasingly disruptive to my ability to handle a job and child-care duties. Initially, these episodes seemed to come from nowhere. Later on, I found that playing certain pieces of music of which I was fond, would send me into such intense sobbing that I would be forced to pull over if this occurred while driving.
By the time 1991 rolled around, something was to be added to these periodic bouts with intense sadness. Early in that year, my daughter became very ill, keeping both my spouse and I awake at night for weeks on end. By the time the problem was diagnosed to be a dental infection and dental surgery was done, I had begun to have a sensation of "hollowness", as though I really weren't part of this world, most of the time. In late summer of that year, a series of events in which my subconscious had informed me that a friend had a serious illness, sent me into a final "dive": I simply stopped sleeping more than about 2 hours per night. When I first stopped sleeping, I soon noticed that even low-level use of alcoholic beverages would further interrupt sleep and throw me into a state in which I couldn't think of anything but how terrible I felt. This state of pronounced alcohol intolerance would continue for nearly 17 years.
The final blow came in November 1991, when I went into a completely disabling panic/anxiety attack that sent me to bed, cowering. I had no alternative but to seek treatment from the psychiatric profession. Unfortunately, the first two psychiatrists prescribed drugs which either had no effects, or had effects that seemed worse than the problem they were supposed to solve. The third psychiatrist, whom I stuck with for about 6 months, came up with a treatment plan that was partially effective (but certainly not restorative). I stayed with this psychiatrist until it became clear that his treatment was equivalent to Jefferson Airplane singing "one pill makes you larger, and one pill makes you small". I was being jacked up every morning by a toxic, activating SSRI anti-depressant so I could semi-function, and then dropped by benzodiazepenes every night into a non-restorative twilight sleep state.
In retrospect, the most amazing thing about these first three psychiatrists was that not one of them ordered any tests of my endocrine function. Treatment consisted solely of a series of benzodiazepenes, anti-depressants, mood stabilizers, and anti-psychotics, administered in a trial-and-error fashion that yanked my psyche and body chemistry around like a manic pit bull on a 2-foot leash.
Throughout the latter part of 1992, I transitioned to care with my primary-care physician, mostly because I trusted him more than any of the psychiatrists I had seen up to that time. He was able to stabilize me with one of the old tri-cyclic anti-depressants, doxepin, along with low doses of valium. Although doxepin packs a big morning hangover for many who use it, and has very strong anti-cholinergic effects, its ability to put me out at night helped me function satisfactorily for much of the 1990s, even at a dose as low as 10mg, taken once daily each evening.
In 1993 I consulted a highly-recommended psychiatrist, who was the first psychiatrist who actually looked at my thyroid function. When my TSH was measured at 3.5, without also checking my FT3 and FT4, that doctor concluded that thyroid was not my problem. Of course, standards of thyroid diagnosis and treatment have changed radically in the years since then. Under the new AACE guidelines, a TSH of 3.5 would now be suspect, because studies of patients with TSH over 3.0 have shown that most progress to hypothyroidism (i.e. TSH greater than 5.5). The new (2002) AACE guidelines, had they been written earlier, would have meant that further testing and evaluation should be done.
I continued treatment with doxepin and intermittently valium, adding the practice of meditation to help calm myself, up until the fall of 1997. At that time, I came back to my primary-care physician with the symptom of profound exhaustion added to the symptoms of insomnia, anxiety, and depression I had suffered with for years, to various degrees. Fortunately, my GP was suspicious of thyroid function, and found that my TSH was floating above 8. Since this was well above the old/traditional limit of 5.5, he was ready to start treatment, with T4-only replacement.
I began taking thyroxine (T4) shortly thereafter with high hopes. Initially, the treatment was successful: getting the added thyroxine into my system caused an immediate improvement in quality of sleep.
However, the use of T4 did not turn out to be an unqualified success. After use of T4 for about a month, it was apparent that use of thyroxine alone did not produce a full recovery. I still suffered from anxiety, and continued use of T4 was gradually increasing my level of anxiety.
In the meantime, hair loss continued. Several years earlier, I had noticed that running my fingers through my hair would produce an unpleasant sensation, almost as though the hair roots were tender. By the time of my 50th birthday, in 1996, I had noticed that my pillow was virtually coated with hair by the time I would remove it for washing. Unfortunately, nobody close to me, or my GP, reminded me that hair loss is a prime symptom of hypothyroidism. Like most males, I was ready to assume it was plain old male pattern baldness. By the time I was treated correctly and the hair loss stopped, I had pronounced thinning on the crown which was too advanced to correct itself in response to correction of the thyroid problem.
In 1998, I began experimentation with amino acids which was to last for almost 9 years. I found that use of tryptophan, 5-HTP, and GABA could reduce (but not correct) the worst of my symptoms. In retrospect, though, use of amino acids is a poor substitute for a well-functioning thyroid, as well as being expensive and inconvenient.
By the summer of 1999, I had reached a paradoxical situation. Experimentation had shown that my body needed on the order of 100 micrograms of thyroxine (T4) to keep my TSH down to a reasonable level; yet taking that much T4 was causing intense anxiety, requiring me to use strong sleeping medications. By late summer 1999, I had noticed another distressing symptom: my acute sense of hearing was being increasingly impacted by tinnitus. Evidently, the root cause that drove me into hypothyroidism, could also impact hearing.
It was soon after a household move in the spring of 2000, that I had a partially-disabling attack of severe epicondylitis (more commonly known as tennis elbow). It was obvious that my body was no longer able to handle the short-term stresses of the hard physical work required by a move. This obvious physical symptom, accompanied by increasing periodontal issues and continuing neurological/psychiatric issues, prompted me to seek other treatment.
In Sep 2000, I began seeing a prominent "metabolic" doctor (M.D.) who is well known for his treatment of the metabolic disorders of diabetics. This doctor has written a number of books related to dietary changes and supplements needed to stave off metabolic degeneration as one ages. I was switched to Armour thyroid, and began treatment with other hormones (primarily hydrocortisone in low doses to supplement adrenal function, and pregnenolone). I took an enormous range of nutritional supplements recommended by this doctor, and also made radical changes in diet, which I maintained for nearly two years. Unfortunately, nothing seemed to really work: I did not obtain substantial relief of my symptoms. A thyroid test in Sep 2001 still showed unsatisfactory results: my TSH was 4.7, and my FT3 was below the bottom of the normal range.
By the spring of 2002, I had decided I would have to take my care elsewhere if there were to be progress. After doing a brief telephone consult with a naturopath outside my home state, I began seeing a naturopath in my home town for whom I had obtained very positive recommendations via a web search. By March 2002, the naturopath had informed me that testing showed my hypothyroidism was due to anti-thyroid antibodies, i.e. my body was attacking its own thyroid gland. This condition is officially known as Hashimoto's Autoimmune Thyroiditis (HAIT). As I now know, HAIT is the leading cause of hypothyroidism. I found this discovery quite amazing; how come the three endocrinologists I had seen between 1998 and 2002, had not given me this information? I was started on Thyrolar (synthetic combination T3/T4) by the naturopath, because she said that my body's ability to make T3 may have been compromised by HAIT.
Soon after beginning to see the naturopath, I learned that Dr. Stephen Langer of Berkeley, CA might have additional information on the problem I had been having with thyroid hormone causing anxiety in a hypothyroid patient. I had searched for information about this syndrome in a number of places but found nothing; for instance, the well-known book "Thyroid Solution", by Ridha Arem M.D., contains no information on the condition. So, I consulted with Dr. Langer and as told that a small percentage of people with Hashimoto's are exquisitely sensitive to even low doses of thyroid. In fact, the condition is rare enough that virtually no GPs, and only a few endocrinologists, know of its existence. Apparently, it does not have an official name attached to it. I decided to refer to it as "HAIT anxiety syndrome", although there are a few doctors who refer to any neurological symptoms accompanying HAIT as "Hashimoto's Encephalopathy".
I began to feel a little better between Mar 2002 and June 2003. I'm not sure why the message about gluten grains had not penetrated before, but by June 2003, the naturopath reminded me again that she had seen a positive result to a test for gliadin (one of the two major proteins in gluten grains) antibodies in 2002, and that I really should consider removing gluten grains from my diet.
This recommendation was based on three factors:
1. I had antibodies to the protein gliadin found in wheat and other gluten grains such as rye and barley;
2. I had anti-thyroid antibodies which were over the threshold that defines HAIT;
3. Medicine really is an experimental science, and this experiment, in spite of its inconvenience, appeared to be worth a try.
In a numbers sense, the response of my anti-thyroid antibodies to the June 2003 removal of gluten grains from my diet was slow, but gratifying. My thyroperox test started off at 25, dropped to 19 within 6 months, 7 within 10 months, and became zero in less than 2 years. Although my antibody level was never extremely high, it became obvious that even a low antibody level, over a long period of time, can do the same damage as a high antibody level over a short period of time. I also theorize, although it cannot be proven, that the thresholds set on antibody levels (you have HAIT if you're over, and don't have it if you're under) are arbitrary and provide a false sense of security for those who are barely under.
I eventually concluded that the removal of gluten grains from my diet was not all that difficult. Because I am not a "classic" celiac who experiences symptoms like vomiting and diarrhea after using gluten, I didn't immediately worry about that last 1% of gluten. Also, the realization that removal of (mostly flour) gluten products from my diet would have a positive health effect in terms of reduced glycemic index, was a motivator.
My symptomatic improvement thereafter was not immediate. It soon became obvious that T3/T4 treatment is not an exact science, and the proportion of T3 to T4 needs to be closer to the human body's need, not the pig's need. (Both Armour and Thyrolar have the T3/T4 ratio of one part T3 for every four parts T4, typical of the pig's biochemistry.) For instance, in late 2003, my TSH had dropped very low, i.e. I had become clinically hyperthyroid due to excess T3 as revealed by a free T3 (FT3) test. I went through a couple more of these "yo-yo" episodes while being treated, which is a not uncommon event, because thyroid treatment is as much art as science.
Cost of treatment also became a problem. By June 2004, I began seeing a highly-recommended Physician's Assistant (P.A.), who was known locally to be very good at thyroid treatment, and whose clinic would accept my health insurance. I continued to see the naturopath, although at less frequent intervals, since my insurance (like most) would pay nothing for naturopathy. The P.A. and the naturopath did not completely agree on treatment methods, particularly the use of adrenal supplements (hydrocortisone and DHEA in low/biologic doses) along with thyroid supplements. However, they were both in agreement that I should continue to pursue combination T3/T4 therapy. So, I blended recommendations from the two for awhile, transitioning to T3 and T4 in separate tablets of Cytomel and Synthroid, so the percentage of T3 could be lowered. Within the following two years, as my anti-thyroid antibodies decreased, I would eventually find that convenient T4-only supplementation would become more (but not completely) satisfactory, because my FT3 and FT4 test results appeared to be showing that I was now doing sufficient T4-T3 conversion. At this time, I was not aware that most T3 testing did not discriminate between T3 and its chemical mirror-image.
I gradually transitioned off adrenal supplements during 2005 and very gradually increased my T4 supplementation over the course of the year. Finally, by Sep. 2005, I began to realize that I was beginning to feel better, but also that I was still not in perfect health. My sleep was not perfect; I had discovered what Ridha Arem M.D. has documented in the book Thyroid Solution: a return to the euthyroid state may not immediately eliminate all symptoms. After going to a small dose of the atypical anti-depressant mirtazapine, I improved some and stayed in a stable state for awhile.
By the spring of 2006, however, my sleep had begun to deteriorate again. In May, I tried acupuncture a few times, and bought a light-box, but could still not get relief. By the time summer rolled around, I was back in the naturopath's office.
An adrenal test showed that my adrenal function had gone almost to nothing. Clearly, there was a continual downward trend in adrenal function, shown by tests in 2002, 2004, and 2006. The naturopath contended that I needed to go back on Cortef (hydrocortisone) and DHEA to prop up my adrenals. That I did, but it did not provide much symptom relief.
By September, I was feeling really bad. The naturopath and her assistant decided that I should be tested for heavy metals via a DMSA provocation/challenge test. The test came back positive: significantly elevated level of lead, and somewhat elevated level of mercury.
Shortly thereafter, I started chelation therapy with the chelating agent DMSA. This was to continue for eleven 2-week rounds, into Feb. 2007. Although I had periods where the chelation seemed to be making me feel better, the result was not as successful as I expected. Three months after the chelation ended, a follow-up blood lead level test (non-provoked) would show an undetectable lead level, so it seems unlikely that I have a large amount of lead stored in bone.
In spring 2007 I was back in my thyroid doctor's office, and we discussed other treatment alternatives. Who in the area was likely to come up with new avenues of investigation? The result was a referral to see a "holistic" M.D. in March 2007.
Improvement thereafter was significant. On my second visit to the "holistic" M.D., he recommended that I do a urine test for the stress disorder pyroluria. The results came back positive, although not strongly so. He recommended starting treatment anyway, with a high-dose vitamin and mineral preparation. This preparation contains vitamins B6/P5P, niacin, and pantothenic acid, along with minerals zinc, manganese, and magnesium. I was skeptical, but had no serious objection to trying something that was highly unlikely to be toxic.
The result was that I felt close to completely well within three weeks. However, I started feeling worse after about five weeks. Because of my long experience with drugs, I had the presence of mind to consider that the very high dose of "pyroluria formula" I was taking, might be too high. Cutting back the dose brought me back to a state in which I felt calmer and slept better. Because my read-out on the pyroluria test was in the gray zone between no diagnosis and firm diagnosis, it seems sensible that I would not require a mega-dose. I was later to determine that my negative response to large amounts of the preparation was probably due to the high levels of pantothenic acid it contains, and eventually began supplementing the formula with plain B-6 and zinc.
To augment my treatment by the "holistic" M.D., I shortly thereafter began seeing a Certified Nutritionist he recommended. On the very first visit, the CN looked over my case history and made a couple recommendations. The first was to go on a supplement regimen designed to heal gluten enteropathy. That regimen included large doses of ground flax-seed, Metagenics' Glutagenics (glutamine/licorice/aloe), and mineral supplementation. The second recommendation was to do a trial elimination of dairy products, based on her previous observation that people with gluten enteropathy, often cannot digest dairy foods.
Going dairy-free turned out to be a positive step. Within a few weeks, I noted that my digestion was working much better. Based on this result, I was ready to follow more of the CN's advice. At our second visit, she recommended changes to my supplementation plan. She also noted that I am one of a few patients she and the "holistic" M.D. are monitoring to see if pyroluria improves with intestinal healing. The theory is that, when "pyroluria" is actually due to intestinal damage, the pyroluria will recede if the intestine can be healed.
These recommendations proved to be good ones. Within about six months, I noticed that I could skip supplement doses without negative effects. I also noticed that my previous sensitivity to dairy foods had disappeared. By the end of 2007, I was finally able to get my thyroxine up to a dose which should be therapeutic. However, as 2008 rolled around, I continued to have subtle symptoms, and continued to need mirtazapine, which reminded me I wasn't really back to normal.
It turned out that 2008 would be the last full year during which I "enjoyed" poor health. Early in 2008, I had been discussing my issues with a friend on the internet who had some of the same symptoms. He casually suggested that perhaps I should increase my vitamin D intake. About Feb. 1, I increased my D3 intake to 2000-3000 IU per day. A few days after having a blood draw in early March, my doctor's office called me in a hurry to say that my TSH was undetectable (had dropped below 0.015). Since I didn't change my T4 dose, it was clear that D3 had done something. Later research turned up the information that adequate levels of vitamin D are absolutely required for good thyroid function. In fact, the body's receptors for Vitamin D are in the same receptor class as thyroid hormone receptors.
At this point, I wasn't sure what this meant. I immediately went off T4 to dump the excess, then went back on at a lower level. What was going on? I just wasn't sure.
During this period my net-friend also said he thought I should give more attention to my magnesium level. I lowered my calcium intake and began taking up to 800mg of Magnesium Aspartate per day. Although it didn't "fix" me, I did feel somewhat calmer. I followed this with an iodine challenge test to make sure my thyroid issues had no relation to iodine; the result of 70% sufficiency seemed to rule out iodine as a problem.
When I finally went back to see my friend the alternative doctor in June, his response was to ask "How do you feel? Maybe you don't need the T4 and should just go off it." So I went off T4 and by the time late July rolled around, a test in my regular doctor's office was showing a TSH above 8.0, and I sure didn't feel well. For the rest of the year, I gradually increased my T4 dose, peaking at 100mcg per day, in the hope of feeling well. I also had checks done of my B-12, ferritin, and vitamin D levels. I stayed on 1000 IU vitamin D3 per day, and began taking an iron supplement to try to boost my ferritin a little higher than 68.
In fall 2008, my single-minded concentration on my thyroid issues had to take a back-seat to another problem I could no longer ignore. Since 1984, I had been having problems with back-pain that were sometimes nagging, and sometimes intense. The reason for this wasn't clear; I had never had a severe auto accident, or any fall more severe than falling off a bicycle. I had managed to treat this problem with visits to a chiropractor. After a severe pain attack in 2008, I finally decided it was time to thoroughly investigate what the problem was.
X-rays from multiple angles, and an MRI, showed a pretty messy situation. I had a herniation at L3-L4, and degeneration at L4-L5 and L5-S1. A visit with an M.D. orthopedist specializing in spinal issues quickly made it obvious that conventional medicine didn't have much to offer, and the probability of a successful outcome from expensive, life-disruptive surgery was low.
I finally elected to do spinal-decompression therapy with a reputable chiropractor who has a long record of ethical treatment. Three months of therapy were sufficient to produce improvement, but I still did not feel "cured". A fall or other jolt could cause pain and instability to return.
As I lay on the decompression table thinking about what could have caused this problem, the truth was soon obvious. I had already read that celiacs often have problems related to bone and connective tissue degeneration. It seems obvious now that hypometabolism due to thyroid failure stretching over more than 17 years, multiple endocrine deficiencies, and many years of severe nutritional deficiencies stemming from gluten enteropathy, are the culprits for this problem. Being under constant pressure, it is hard for the body to repair the lower back; under the conditions caused by gluten poisoning, repair becomes impossible.
As 2008 was coming to an end, a net-friend casually asked me if I had considered Wilson's Temperature Syndrome (or "Reverse T3 Dominance" as it is called outside the USA). I visited the Wilson's website, ordered the books, and studied the theory carefully. I already knew I had hypometabolism, because my body temperature tended to stay rather low, usually just over 97F, and sometimes even as low as 96.3F basal (upon awakening). But, a generation of doctors who had learned to make fun of the late Broda Barnes M.D. and his temperature theory, were in the habit of not noticing sub-normal temperature in their patients; or if they did, stating that it didn't matter. So, it seemed like the Wilson protocol, with low temperature a primary diagnostic prerequisite, might be worth a try. After all, I had tried what seems like almost everything else.
In January 2009, I went off T4 completely and began taking a combination of immediate-release and sustained-release T3 (triiodothyronine), along with a daily B-12 lozenge to blunt the "rush" from immediate-release T3. T3 is the thyroid hormone which the body actually requires. The fact that T4 is used successfully with many hypothyroid patients means that they have sufficient quantities of ferritin, cortisol, the deiodinase thyroid conversion enzymes, etc. Patients who don't have the correct biochemistry, suffer because their bodies convert too much T4 into Reverse T3.
The result of T3-only therapy on brain function was astounding! Once I had been off T4 10 days, and on T3 doses of 20-25mcg per day for a week, the brain fog and motivation problems I had had for nearly 20 years, simply went away. The conclusion was obvious: in addition to the glandular hypothyroidism I had acquired from the effects of gluten, I had "Reverse T3 Dominance", a (usually) stress-caused disorder in which the body converts too much of its T4 to rT3. rT3 is a compound which is the chemical mirror-image (reverse) of T3, but has no biological activity, other than to block thyroid receptors from receiving T3. The protocol described by Wilson is difficult; I went though one cycle of loading the body with sustained-release T3 and found it eventually produced hyperthyroid symptoms. It soon became obvious that, in addition to being difficult, there was much about the Wilson Protocol that was simply illogical.
Within a couple months after starting T3 therapy using the Wilson protocol, I learned it was possible to use only non-time-release T3 (Cytomel) with just as good results. I would finally work myself up, then down to twice-a-day dosing at 65mcg Cytomel per day. On this program, I not only feel energetic during the day and sleep well at night, but my weight finally dropped to where it should be (165 lbs.).
As my treatment progressed during the year 2009, I was to discover a totally serendipitous and welcome effect of T3 therapy. By June 2009, I became conscious that my back no longer felt as painful and instable as it had. This was proved in Sep 2009, when I was slammed to the ground in a freak mountain-biking accident. My back did not go into spasm, and recovered fairly quickly. By Nov. 2009, I was no longer having any back pain or instability.
That I still had lingering effects from celiac-caused degeneration, became obvious in Aug. 2009 when I had an osteoporosis evaluation requested by my regular doctor. He had become suspicious about whether the back problems were related to osteoporosis. The finding of bone density at 0.75 grams/square-centimeter in the neck of my right femur was clearly osteopenic, and very close to osteoporosis. This was not a surprising finding; I was expecting a problem. A saliva test of adrenal function also in August, showed that my adrenals were still awakening in the middle of the night. This is a common effect of previous long-term hypothyroidism, which can be expected to gradually get better, and it has: sleep quality was continuing to improve through the end of 2009.
In Nov. 2009, the chiropractor who had been administering my decompression treatments was amazed at my progress. He had thought I was "fragile" when I started treatment with him in Oct 2008, but was now amazed at the increase in leg muscle strength when he tested me on his table. He was definitely interested in what T3 had done to me ... and probably a bit disappointed that I no longer need decompression treatments!
Life finally looks good again!
Today, I religiously take about 65mcg of Cytomel each day, and will modify my dose until I'm certain that I've reached the dose that makes me feel the best. I also religiously avoid all traces of gluten grains in my diet; I do not want to risk further metabolic disruption. Like the co-author of the book "Dangerous Grains", Ron Hoggan, with whom I have corresponded, I have come to realize that our society's over-use of a glue-like, hard-to-digest and potentially toxic substance isn't just dangerous to the 1 in 133 people who have full-blown celiac disease; it can cause a poor quality of life for the 30-40% of people (source: enterolab.com) who have gluten intolerance. I have also come to the realization that, to those few who are unlucky enough to encounter the HAIT Anxiety Syndrome, you may never again feel as well as you did when you were young, unless you find a way to stop your immune system from waging war on your thyroid. And, the chronic chemical and emotional stresses related to hypothyroidism and malnutrition can shove your body into "famine" mode, where your body shifts to "Reverse T3 Dominance" and you feel terrible because of it.
Most of all, 17 years after it started, I feel as though a not insignificant part of my life has been taken from me. I was unable get joy or pleasure from life, I was unable to work effectively, and I was unable to be the kind of parent I could have been between my 45th and 62nd years of life.
I never imagined that I would be looking forward to the relatively advanced age of 62. However, given that I now feel better than I did at any time between the ages of 43 and 62, 62 looks like a good place to be.
Summary
In retrospect, the most important personal things I ended up learning about medical treatment from 17+ years of unpleasant experience are:
• Question conventional wisdom. Conventional medical wisdom treats symptoms, not causes. Conventional wisdom says you have to put medicine(s) in to make you better, when sometimes removal of something is more important.
• Be prepared to learn more than your doctor, because many M.D.s won't have training in the specifics of your illness, and most won't have personal experience with it. After you've found out all you can from the Internet, use a medical school library, or a medical specialty library service in a public library.
• Change doctors if your doctor is uncooperative with your wishes. In particular, if your TSH is above 2.5, and your doctor will not do more comprehensive testing (e.g. FT3/FT4, thyroid antibodies) and/or do a trial of thyroid supplementation, find another doctor. If you have had long-term hypothyroidism, you may be like me: you may have to push your TSH below the bottom of AACE's 0.3-3.0 range, to feel well. And, you may have to do T3/T4 therapy, or T3-only therapy to feel well. However, you won't be able to do that if your doctor won't cooperate.
• If your M.D. says a therapy is "fringy" or "controversial", and you aren't getting results, be prepared to use "alternative" medicine. But, be discerning and prepared to change "alternative" practitioners.
• If you need thyroid hormone and are gluten intolerant, make sure the brand of hormone you are using, is free of wheat starch or other possible gluten source.
• Exercise, esp. if you're gaining weight. Even if you are not yet well, exercise will make you feel better.
• Get tested for the major food allergens: gluten, dairy, corn, and soy. Be prepared to limit or eliminate them from your diet.
• Get tested for all known nutritional deficiencies. Try to do this in one "big bang". I fooled around for years, finding deficiencies one at a time. I should have gone to a nutritional specialist and found about all of them at one time.
• If you have psychiatric symptoms, e.g. depression, anxiety, panic disorder, etc., make sure your endocrine system is evaluated, with thyroid testing as the cornerstone. Beware of doctors who offer an antidepressant first thing, without endocrine evaluation. If endocrine support doesn't correct your problem, look for an "alternative" doctor who can do testing for other biochemical imbalances. If you have hypometabolism (low temperature), investigate all of the many other causes of low temperature, such as mercury poisoning, gut wall infection, etc.
• The emotional/psychiatric effects of hypothyroidism are at least as damaging as the physical effects. Unfortunately, many M.D.s focus on the physical.
• If your doctor diagnoses you as hypothyroid, demand that a test for anti-thyroid antibodies be done. If you have any antibodies, even if they are under the threshold where HAIT is considered to start, get testing for food allergies and common environmental toxins. You may find, as did I, that you won't feel as well as possible until you free your body from antibodies.
• Some of the problems of American medicine can be traced to its ineffectiveness, which increases cost for everyone. Although genetic pyroluria is not uncommon (10% generally, much higher in psychiatric populations), makes people feel really terrible, is easy to diagnose and treat, and was discovered over 30 years ago, many M.D.s have never heard of it. Even fewer doctors know that intestinal damage caused by gluten or other food allergy, can cause malabsorption that results in non-genetic "pyroluria". Because almost nobody knows this, they don't know that the pyroluria test is an inexpensive, effective way to check for malnutrition caused by intestinal damage.
• If you have gluten enteropathy and the nutritional deficiencies that go along with it, whether or not blood tests show you are hypothyroid, get tested for rT3 Dominance. Since rT3 Dominance is thought to be a famine-survival mechanism, there is a significant probability that your body will interpret your deficiences as famine, and turn up rT3 production.
• The co-existence of HAIT and pyroluria in my case, suggests a hypothesis as to why "Hashimoto's Anxiety Syndrome"/"Hashimoto's Encephalopathy" occurs in some people, but not others. Obviously, HAIT by itself causes some anxiety, since ridding myself of HAIT antibodies reduced anxiety related to administration of thyroid hormone. It seems a reasonable hypothesis that any of several biochemical syndromes that are known to cause anxiety, could add anxiety to that caused by HAIT. Certainly one of those is pyroluria, whose functional deficiency of B6 and zinc disproportionately affects the neurological system; it can cause anxiety and atypical/unusual reaction to drugs and hormones. Another one of those is hypometabolism, whether caused by "Reverse T3 Dominance", or something else.
• It is known that high oxidative stress can create food allergies (per William Walsh PhD of the Pfeiffer Treatment Center). Since pyroluria causes oxidative stress, it is a (unproven at this point) theory that my food allergies may have been worsened by co-existent pyroluria.
In addition to the many, basically personal things I have learned about health-care, there is a much larger issue. In all the financial expense and the glacial slowness of getting answers for my long-term illness, is there a lesson about the current American frenzy to "fix health care", and to lower the runaway cost?
In all the talk to date about health-care, there is very little mention of where the high cost comes from. But public-health experts know this: they have said that over 75% of the cost of health care comes from taking care of people with chronic illnesses and disabilities.
There are many examples of where chronic illness is fixable. Taking gluten poisoning as an example, it is now estimated that about 1 out of every 133 people has full-blown Celiac Disease, yet the Celiac Associations say 97% of these cases aren't treated. Arithmetic with these numbers results in a figure of about 2.2 million people in the USA who aren't treated. That dirty little number could easily translate into billions of dollars wasted in the healthcare system each year, and lives being lived below potential (or not at all).
Everywhere one looks, there are problems. Diabetes. Heart disease. Cancer. Many of these cases are not genetic, but rooted in poor food choices, other poor health habits, and environmental pollution. The modern "money changers in the temple" are those who lull us into buying cheap foods like gluten and corn syrup, and who dump a complex stew of chemicals into our air and water.
I am one of a lucky few who found answers, but it still took a ridiculously long time. The many in America who now are suffering from long-term, chronic illnesses don't seem to have registered in the consciousness of those who say they want to "fix" health care. Electronic medical records, or other high-tech tricks, aren't going to really fix the problem. Only a massive consciousness shift on the part of the American people in respect to their health habits, accompanied by a government effort to hold the health-care system accountable for poor diagnostic and treatment practices that prlong fixable chronic illnesses, could reduce the high cost of health care and make the system concentrate on what it should be doing: providing help to people with disabilities and genetic illnesses.
Edward R. Arnold
era [at] pobox [dot] com
4 Dec 2009