Update March 2016: As my condition continues to evolve, so does my learning. I decided to do another small trial of iodine again. This time, I did not develop all of the symptoms that occurred as described in this section. This suggests that Iodine alone did not induce those symptoms. So the title of this webpage, “Anatomy of an Iodine-Induced Flare”, may be somewhat of a misnomer at this point in time. See the last “Update” below. Despite this, I’m keeping the original title for this webpage, as it describes my original interpretation of this event.
In August of 2014 I inadvertently experienced yet another Iodine-induced flare. I was OFF thyroid hormones at this time. I had been on a very limited diet for years, and I decided to try adding beans back into my diet. Wanting to avoid BPA, I bought canned Eden brand Organic Beans, because they advertise their cans as being BPA free. I had a dinner with vegetables and probably about ¼ cup of Black Beans. Within an hour, I felt like I had ingested iodine, but I couldn’t understand from where, as absolutely nothing had changed except I had added these beans. I didn’t recall Black Beans as having any excessive iodine in them either. Within a few more hours, my Achilles developed sharp pains in them, and many of my other iodine-induced symptoms were very mildly starting. So I got on the internet to double check the iodine content of Black Beans. As I was scrolling through the search options, I happened to see “Do Eden Beans Have Too Much Iodine?” I had never heard of Kombu before. It turns out that Eden adds an extract or broth of something called kombu, a sea vegetable also known as kelp, to their beans to “improve flavor, digestibility, and nutrition”. Kombu has an astounding amount of iodine in it, at least, from the perspective of someone sensitive to iodine. Kombu extract is not synthetic MSG (D-glutamic acid), but it is the natural flavor essence of L-glutamic acid. So notably, there’s also quite a bit of glutamic acid in there as well.
Thank goodness I had washed the beans thoroughly, which is supposed to lower the iodine content to about 36 ug iodine per ½ cup. So ¼ cup beans was presumably giving me less iodine, perhaps 15-20 ug. The first day symptoms weren’t too bad, and for reasons which look incredibly stupid now, I decided to try keeping up with the beans to test my iodine tolerancy further. After all, we’re only talking about 15-30 extra micrograms of iodine per day. I think sometimes even now, it seems incredible to me and I just can’t believe I’ve developed such a sensitivity to iodine, given that I had grown up on such comparatively large amounts. Even today, at almost five years out, sometimes I still go into these periods of denial at times at how incredibly FQ’d up I am. At any rate, I decided to continue eating about ¼ cup for the next few days to maybe finish off the can. I thoroughly rinsed the beans every day, assuming I was washing off most of the iodine.
By Day 4 it was all over. Symptoms developed rapidly, not only the familiar Iodine-induced symptoms, but now a whole body “buzzing” and feeling like my finger was stuck in an electric socket. I started getting the “electric fence” shocks, an incredibly painful jolt in one nerve in my left lateral thigh, that would jolt my entire body (and made me fear I would develop Tardive dyskinesia). My muscles became incredibly weak; I could hardly hold my head up or walk. My tongue felt thick, and alternately “buzzed” with the electric feeling and went numb. My face and lips and chest “buzzed”. It became difficult to swallow, and I felt like I had a tennis ball stuck in my throat. I worried I was having some kind of allergic reaction because my throat and tongue felt swollen and if it continued I worried about my airway closing off. My throat was incredibly sore, and dry, and my eyes of course worsened to all the usual. The “tennis ball in my throat” feeling was my thyroid gland swelling up, and it became extremely tender and painful. The pain eventually radiated up my jaws, one side, then the other, and even out to my ears, leaving me with sharp stabbing pains radiating from my head and jaw area out my ears. The pain also radiated straight down my chest to my thymus gland, which now swelled and became painful in concert with my thyroid gland. Emotionally, I tanked big time: the CNS symptoms exploded and the extreme feelings of “impending doom” and “this is really it” hit me, a combination of extreme anxiety with a “zombie” like fogged out state in my head. I staggered around my house, as if in a drug induced haze, or as if I were coming out of anesthesia. I felt like I was going to collapse with symptoms similar to a combination Thyrotoxicosis, Myasthenia Gravis, nerve gas toxicity, and anaphylactic shock. I had cleared out most of my place; now I started shredding the last of my personal information in preparation of either collapsing and dying or ending it all.
At that point in time, I believed it was all due to the iodine. I developed a case of something similar to “Painful Subacute Thyroiditis”, which left me feeling like I had an all over achey body flu and a horrible dry sore throat along with my other symptoms. All my other thyroid-related symptoms were in full force once again. The “glutamate toxicity” is a rather newer hypothesis of mine, especially as my neurological symptoms have continued to progress more in the past year or so. Symptoms certainly seem to match well with those who experience MSG Sensitivity, and FQ-induced Glutamate/GABA receptor disruption is suggested by several research studies and well accepted within the fluoroquinolone victim community. So perhaps some of this reaction was due to the glutamic acid in the Kombu.
Needless to say, I wised up and stopped the Eden beans, but I was left to battle the Subacute Thyroiditis-like condition now, which typically waxes and wanes in intensity while lasting a year or more. It’s often treated with Pred, which of course I didn’t want to do. But the misery factor increased again to a really incredible level as a result of this new thyroid problem and overall progression of thyroid failure that was going on with me. I had struggled and suffered for the past year and a half waiting to see if my thyroid gland could “fix” itself if given enough time, despite the Hashi’s, gently supplying nutrients and a “Hashi friendly diet” without overwhelming my thyroid. Now, about 1 cup of beans and about 120 ug iodine wiped out whatever progress had occurred during that time, and my thyroid gland entered what I call its “final death throes”. The least bit of iodine now made my thyroid and thymus gland swell up painfully, and it felt like the same was occurring now with my salivary glands along my jaw line. All my other bodily symptoms would get worse as this occurred as well. It was as if my entire body now could no longer tolerate any iodine.
Fortunately, I’m still able to take Ibuprofen without a problem, so I started a high dose of it (as an aside, I was unable to tolerate turmeric or curcumin, which I had repeatedly tried). This helped decrease the thyroid swelling immediately, along with some immediate relief of my symptoms. I have to say, I was once again amazed at how many of my symptoms appeared to be “thyroid related”. I was still taking my daily 5-8 ug basal level of iodine, and my thyroid gland would swell up after every dose – and exacerbate all my other symptoms. The same thing occurred when using the topical estrogen – there was no doubt now that estrogen affected my thyroid gland, as it swelled up with every application – also along with my symptoms. The Ibuprofen would drive the thyroid gland swelling down, presumably along with antibody or other inflammatory cells – and all my other symptoms would improve. This was just once again confirmation to me that 1) I had a major iodine metabolism problem, and 2) how systemic my TH/Iodine metabolism problems are.
Within the following days of this latest crisis, I did start slowly adding in canned beans again – just not the Eden brand. And for the first day or two post crisis, I didn’t even take my daily 5-8 ug iodine dose. I was too afraid to stop the iodine for too long, as I was still afraid of initiating an even worse flare than what I was experiencing. So I resumed that pretty quickly. Symptoms did continue to improve, and I continued to eat a variety of beans, seemingly without adding to the problem (I would not do this again; see below). However, I continued to battle with the Subacute Thyroiditis-like symptoms for months afterwards, as it waxed and waned in intensity. It was months before I could decrease and quit the Ibuprofen for longer and longer periods, and each time I quit, the thyroid gland swelling increased and all my other symptoms intensified again. Additionally, it does seem like the neurological symptoms have progressed overall, and I’m wondering if that might be due to a possible “glutamate toxicity” or perhaps an MG exacerbation as well. In fact, I am now pretty confident that I do probably have an underlying MG-type condition, and that an ACh/AChE-related problem is now coming to the forefront.
At any rate, it’s several months later, and I’m still battling the effects of those beans. Now, on top of all my other issues, my thyroid gland is waxing and waning swelling up and down all day, depending on what I ingest or topically apply, and it seems to exacerbate all my other symptoms at the same time. In desperation, I cut out eating all beans just in case they were contributing, and even tried cutting out all iodine. Within 2 days of no iodine, a lot of my “hyper” symptoms cleared up – tendons felt better, no more lactic acid burn in my thighs, no “electric shocks”, PN improved, eyes less dry – but I was left with an incredible fatigue to where I could hardly get up and function. Like there was just no “gas” at all, and I started getting the “hypo heart” pounding and palpitations. Serum levels of T4 and T3 remain, of course, within normal limits, as I tested yet once again. I finally gave in and added the 5-8 ug iodine in again, because I needed to get to the local store for some food, and there was no way I could make it there without some energy. I also couldn’t stand to feel like I was dying a long, slow, miserable death due to lack of iodine any more than I could stand it when I was “too high” with “too much” iodine. Once I started the 5-8 ug of iodine, I had a day or so of being in “the sweet spot” as my cells grabbed that iodine and used it for energy. I did as many errands as I could that day, because I knew it wouldn’t last.
Update as of December 2014: As predicted, I slowly continued to go “hypo” overall. At a minimum, I couldn’t supply the basic nutrients of iodine and selenium to a failing gland, so this was to be expected. Eventually, I apparently reached the tipping point again, and the vertigo symptoms started returning and progressing. The only “good thing” about this was that I was able to confirm unequivocally once and for all, that severe vertigo symptoms are in fact my “end stage hypo” symptoms. They are a severe form of what I call “hypohead” – all my head/CNS/eye symptoms become excruciatingly painful along with the vertigo. “Hyperhead” symptoms are equally excruciating, but the symptoms are different than “hypohead”, and now I could feel and define this further for myself. It was now literally two years since my Dec 2012 flare that had forced me off all thyroid hormones. I had struggled to wait and give my thyroid axis a chance to right itself and the gland to “come back” and function normally during this time. I had suffered tremendously, and had barely remained self sufficient throughout this time, functioning at a bare minimum level. The vertigo was a deal breaker for me; I couldn’t function and remain self sufficient, and I simply wasn’t going to go through that again. Of course, my mood and emotions were going downhill along with my thyroid gland as well. I made an appointment with my endocrinologist, on the very off chance she might actually have some kind of useful recommendation for me. Unfortunately, she had nothing to offer me, and in fact, discharged me as her patient, saying my problems could be better handled by my GP (who had sent me to the endocrinologist saying my problems could be better handled by her). There was nothing left for me to try other than to get back on thyroid hormone medication again. I took a little T3 – just 1.25 ug – and felt it literally bathe my cells and clear up the vertigo within an hour. This is just what iodine would do – but T3 is different than iodine, in that I am supplying the “finished product” of TH/Iodine, and it wouldn’t adversely affect my thyroid gland or other now iodine-averse cells in my body. The following night I took a small amount of T4 –6.25 ug – with the same result. Thyroid hormone had really helped all my symptoms the first time I got on it (June 2011), but I wasn’t sure if that would be the case this time. It was two years and one massive flare (Dec 2012) and SAT (subacute thyroiditis) flare (Aug 2014) later, and it felt like my symptoms had progressed systemically beyond “just a thyroid problem”. But it was clear my thyroid gland was permanently shot and wasn’t coming back, and there was nothing left for me to do but try. So once again, I started on thyroid hormone medication.
A couple of things I learned from this event:
- This acute phase of this SAT (Subacute Thyroiditis) attack felt very much like an MSG (monosodium glutamate) toxicity attack description (look this up on Wiki) as well as a “milder” form of anaphylactic shock. Kombu broth has an astounding amount of iodine in it, and based on my experimentation and experiences with iodine, this could have been the sole problem. However, it’s also true that I had never had this full blown “finger stuck in an electric socket” type neuropathy either, which was pretty scary. Kombu extract is not synthetic MSG (D-glutamic acid), but it is the natural flavor essence of L-glutamic acid. So notably, there’s also quite a bit of glutamic acid in there as well. Many flox victims feel they are sensitive to glutamate, glutamine, and glutamic acid post floxing. Of course, there are plenty of associations of these with the thyroid gland as well (see references section or look up). At any rate, I can’t rule out that part of the reaction may have been due to glutamic acid as well as iodine.
- This is a cautionary tale about using iodine. Since my SAT attack, I have become even more sensitive to the slightest bit of iodine, which has really severely limited my food choices. I would strongly recommend that anyone thinking of supplementing with any form of iodine research and understand the pros and cons before doing so. At an absolute minimum, testing for all the currently known clinically available antibodies should be done (TPO, TgAb, TSI, TBII, and TrAb). If positive for any of these antibodies, extra caution is warranted with using iodine. It would be best to run a full thyroid panel before starting iodine, and then do at least some continual monitoring of your thyroid axis from there.
- I was shocked and surprised at how “flu-like” SAT really felt. After the initial “finger stuck in an electric socket” feeling wore off, I was left with severe body-wide aches, pain, and fatigue that can only be described as “flu-like”. In addition, I had a dry, scratchy, sore throat with a chronic cough, a painful dry chest, dry, painful sinuses and eyes with pain radiating out my ears, and eventually, even painful lymph nodes and salivary glands. I find myself wondering how many people with these non-specific symptoms are diagnosed with the flu, bronchitis, or some other “bug”, and then are given an FQ to combat that (the worst thing that could happen in this particular case, in my opinion). There are basic blood tests that can be run which are considered pathognomic (almost guaranteed) for SAT – in particular, extremely elevated ESR during the acute phase of the first week or so, along with very elevated Tg. SAT is another one of those conditions considered “extremely rare” – which may mean extremely under-recognized and therefore under-diagnosed. I would recommend any flox victim in the acute phase of their floxing be tested for SAT, along with a full thyroid panel. This means adding ESR and Tg (thyroglobulin) to the panel of tests.
- I had long suspected ACh/AChE-related problems as contributing to part of my floxing syndrome. In my particular case, I was identifying this as Myasthenia Gravis, as all my symptoms pointed to this, and its a medically defined condition. The pain and swelling with my thymus gland, and the very strong autoimmune component to my problems, also supported this. There is an association between Grave’s Disease and Myasthenia Gravis, and what was becoming clear to me over time, was that sudden increases in T4, T3, and Iodine, appeared to be exacerbating or “unmasking” these MG-like symptoms in me. There is quite a bit of cholinergic innervation to the thyroid gland, and I wondered if the thyroid swelling I was experiencing was cholinergic/anti-cholinergic in nature due to an underlying MG-like condition.
Update as of February 2016: It’s now been about 18 months since this “Kombu-Iodine Induced Flare”. Prior to this flare, I had experienced lot of CNS symptoms along with a lot of “facial neuropathy” and symptoms such as pressure feelings around my sinuses, eyes, and upper mouth/teeth (“orofacial neuropathy”). But I hadn’t really had much of what I call the “SAT-like symptoms” as described on this page, or what could also be called “Pharyngolaryngeal Pain” (pain around the pharynx and larynx). However, since this “Kombu-Iodine Induced Flare”, I continue to experience some level of pain and discomfort as described on this page, and on another website page (“Sore Throat, Painful Neck Swelling, Choking Feeling, Difficulty Swallowing, Thick Tongue, Cough“). The pain extends to what feels like all three salivary glands (the parotids, sublinguals, and submandibular glands, see pictures here) and/or the muscle attachments of the hyoid bone.
Salivary glands, similar to the thyroid gland, actively uptake and heavily concentrate iodine for secretion into saliva. So I suspect my salivary glands now appear to be as sensitive as my thyroid gland is to iodine. Now, whenever I have a little too much T3, T4, or Iodine, my thyroid gland, thymus gland, and all three salivary glands become quite painful, and feel “thick” and “swollen”. However, there is never any obvious swelling from any of these glands, despite the fact it feels that way and they become quite painful. Although I went through a period of dry mouth with my first Month 8 post flox flare (which is when the severe dry eyes initiated), so far, thankfully, I have adequate and what feels like normal saliva production. Because iodine is heavily concentrated in both the thyroid gland and the salivary glands, I do have a concern that my salivary glands will eventually be destroyed as my thyroid gland is being destroyed. I can take thyroid hormone to make up for the lack of TH production. But there’s really no good substitute so far for saliva production. So I hope this doesn’t happen. Iodine is concentrated in secretory cells and tissues: thyroid gland, lactating breast, salivary glands, and lacrimal gland are the obvious ones. If these cells or tissues are destroyed, it is classically described as Sjogren’s Syndrome. However, there are a lot of secretory cells and tissue throughout the body, which include many exocrine and endocrine glands, as well as cells with neuroendocrine secretion. This contributes to the sometimes severe widespread systemic syndrome of symptoms some people experience with severe Sjogren’s. I do find myself wondering if Sjogren’s is really an “iodine metabolism” problem, if not primarily, then at least secondarily or as part of the “fallout”.
I am now back on TH and by providing the “right amount” of T3, T4, and Iodine, so far, I can keep these symptoms to a minimum. However, they are always there, now highly sensitized to Iodine or TH. This sensitivity, especially of the salivary glands or “pharyngolaryngeal pain” started in earnest with this “Kombu-Iodine Induced Flare”, and feels like it’s now a permanent part of my potential symptoms. Again, I can keep these symptoms under control by controlling the amount of TH I’m on and how much Iodine I ingest. But just a few micrograms “too much” will bring on these symptoms again. And as I said, I do have a concern that I have only bought myself some time, and that this symptom may become worse.
Additionally, with “Kombu” experience, I now suspect that the beans themselves may have been part of the problem. It turns out some beans have a very high lectin content, which can be problematic for some people. I had never had any problems with beans or any other foods prior to being floxed, and I had never heard of the potential “lectin problems with beans”. However, now that I’ve stabilized my TH levels again with medication, I’ve been able to discern some of the food sensitivities I have. I bought organic dried red kidney beans, soaked them overnight, and cooked them as per the directions on the package at a lower heat — big mistake (I should have boiled them at high heat, for starters). I had a definite classic “lectin” reaction, which was not hard to identify. I am in the process of experimenting with this phenomenon now, so I have more to learn about this reaction. As of this update I believe I do have sensitivity to some or many lectins, which was contributing to a hypersensitivity or “allergic” reaction with my “Kombu experience”. I don’t think the beans alone were doing this, but I do think the combination of the beans (lectin) with iodine, and/or glutamic acid, all contributed to the severity of my reaction and sensitized me even more to iodine in general. As well, I continued to eat a different brand of beans for a few weeks after the reaction (which I would not do again knowing what I know now), so this may have prolonged my recovery from this. I stopped eating beans within a couple of weeks, and in fact, didn’t eat any beans for well over a year after this event, but these symptoms persisted. So I can’t blame these symptoms solely on beans. Another big clue this was a hypersensitivity / “allergic” reaction is that the feelings of “impending doom” are often indicative of an anaphylactic-type hypersensitivity reaction (most often in people who have received the wrong blood type). I’ve learned this “emotional response”, which can happen quite quickly (within minutes) is an initial symptom of these reactions.
Do an internet search on “lectin and beans” to find plenty of information about this. Additionally, this paper “Do Dietary Lectins Cause Disease” is an interesting read, and can provide additional research references. In particular for my purposes, note the sentence about the relationship of lectins and antigenic stimulation of pancreatic islet and thyroid cells.
Update as of March 2016
I decided to try and separate out iodine from lectins, MSG, or any other proteins and once again do a trial of iodine to determine what affect it would have on my symptoms. In the previous section, I describe how I was beginning to suspect lectins in foods as being a problem for me. Lectins are in many, if not all, foods, to some extent, and there are a variety of them. But I became aware that I had developed sensitivities to most nuts, and their oils, in addition to the beans. I also became sensitive to some fruits, some of which have known higher lectin contents. Eggs were also a problem. It was quite clear from my “bean” trials, that I was experiencing classic lectin sensitivity with them. So lectin sensitivity was becoming quite high on my list of suspects for these foods sensitivities, which seemed to have developed or worsened during the two years I was OFF thyroid hormones.
For the more scientifically minded, additionally, what also brought the lectin issue to my awareness was the relationship of P4H to collectins (collectins have collagneous domains as substrates of P4H) and more recently, P4H to FQ’s (inhibition of P4H and therefore proline hydroxylation in collagen by FQ’s), as described here and here. As of this writing, I tend to lean quite a bit towards the inhibition of P4H’s as a viable hypothesis to explain many of the potential symptoms and severe syndrome of adverse effects that can develop in those of us with FQT/FQAD. This includes the hypersensitivity / “autoimmunity” which appears to affect some of us, and also provides a mechanism to account for the long term and permanence of some of these reactions. Since many people take an FQ without apparent problems, as usual, I would suspect a genetic or epigenetic pre-disposition to be occurring somewhere involving P4H’s for those of us affected.
Back to the iodine: Most people who have been diagnosed with “iodine allergy” are really sensitive or allergic to the protein(s) that iodine may be attached to in foods or accompanying (for example, shellfish and other seafood), and not the iodine itself. For this reason, I decided to use diluted Lugol’s iodine, and not iodine in a supplement such as Kelp or in a multivitamin. So for this latest “Iodine Trial”, the following applies:
- By using diluted Lugol’s, I would only be supplying iodine alone without any other proteins attached.
- There were no beans or other high lectin foods accompanying the iodine this time around. I was on a limited and stable diet that I knew did not exacerbate my symptoms.
- I was ON a stable dose of T4/T3 this time around. My thyroid gland was “shut off” (meaning, non-functional) and had been for the greater part of a year. The significance of this is, that regardless of the iodine coming in, T4/T3 levels would not change as a result, because I was supplying a constant dose of T4/T3.
- I decided to try 50 ug (MICROgrams) of Lugol’s per day. This is a very low and acceptable amount of iodine to add to one’s diet. Based on my previous “Iodine Trials”, I knew I could not take the larger amounts (milligrams) that many people try and keep my TH doses stable. I also knew that small amounts of iodine tended to exacerbate my symptoms. 50 ug is a pretty small amount, but it was going to be the largest amount I tried in many years. I was also getting about 80-150 ug of iodine from my diet from foods at this point in time. 50 ug was also comparable to what I had probably gotten from my “Kombu/bean” experience as well.
The first two days I took the diluted Lugol’s I developed “Iodine-head” – all the CNS symptoms I typically experience with taking too much iodine in the face of normalized TH levels. Additionally, within hours, the phantosmia returned with a vengeance along with the dry burning in my lungs and thymus area. These symptoms were bad enough that I didn’t feel I could continue with every day dosing. I then started 50 ug every other day. This, I was eventually able to tolerate (and the phantosmia and lung/thymus burning eventually went away). Over the next several weeks, I felt some of the benefits of iodine (warming feet, less burning in muscles, more strength, better mood, no more stomach pains, improved CNS symptoms after the initial ones wore off, and some of the fibromyalgia-like “shards of glass” and “pins and needles” feelings in my muscles improved).
Most importantly, for the purposes of this section, my salivary glands, and the “SAT-like symptoms” never developed. Even more importantly, I felt like the salivary gland pain and the Sore Throat, Painful Neck Swelling, Choking Feeling, Difficulty Swallowing, Thick Tongue, Cough symptoms actually improved. As the weeks went on, for the first time in a long time, that entire area felt consistently better.
Eventually, after a few more weeks, I could feel this extra iodine was “building up” in me, and some of the more negative repercussions of that developed. Although some type of neuropathy had improved with the Lugol’s, some other types were beginning to worsen again, especially on the days I took the iodine (I was still on an every other day schedule). In particular, I developed severe sciatica, where the complete road map of the major nerves exiting the spine down to my toes burned like fire to the point I couldn’t put weight on my left foot and leg at all. It was excruciating. I knew I could lower the TH and it would improve, or, I knew I could lower the Iodine and it would improve. And I knew I couldn’t keep both going, and that I was keeping the TH this time. It was clear this symptom would improve on my “off” Iodine days. I lowered the iodine a bit and it improved, but refused to go away. Any little bit of extra iodine made this symptom excruciatingly worse. I had hoped this was something I could work through, but finally, I had to give in. I stopped the iodine, and immediately got relief from the sciatica.
Throughout my life, I had experienced back pain due to this one spot on my left side. It would flare up occasionally, and I could stretch and exercise my way out of it. Not so post flox, at least at this point in time. The only thing that worked this time was stopping the iodine. I also had not experienced the severe sciatica, and severe cramping that occurred in my left calf before this time either. Unfortunately, magnesium was out as it exacerbated my muscle weakness, as I described here. So stopping the iodine was my only recourse.
I also knew from my previous experiments that my anti-thyroid antibodies were increasing as a direct result of taking this small amount of iodine. As my back pain and sciatica developed and worsened, I started developing additional symptoms. For example, for the first time in years since this had developed as a post flox symptom, the Interstitial Cystitis (IC) symptoms started up again mildly, and there was no way I wanted those symptoms to progress or get worse. There were other, difficult to describe, but what felt like potential “autoimmune” symptoms developing again. How much this may have been due to antibodies increasing, I can’t say. However, these “iodine-induced” symptoms were extremely bothersome, and became intolerable for me. So again, the iodine had to go. Once I stopped the iodine, I lost both the benefits and the additional symptoms I had gained. The sciatica and back pain improved greatly immediately, the other symptoms diminished, and the IC symptoms stabilized, providing me great relief. Within a couple of weeks, I was back to my “baseline of discomfort”. Unfortunately, some of the salivary pain and thickening started returning, along with all the other symptoms of “not getting or being able to utilize iodine”.
There were several things I learned from this experience:
- My salivary glands, which appeared to be contributing a lot to my Sore Throat, Painful Neck Swelling, Choking Feeling, Difficulty Swallowing, Thick Tongue, Cough symptoms, improved greatly with the iodine. I also noticed these particular symptoms worsened with “too high” doses of T4 or T3. This suggests my salivary glands needed iodine – but could not get it from T4/T3. This also suggests a problem with deiodination and therefore the deiodinase enzyme functions – which is something I suspected as being a problem for me systemically as well. Now, without actual research, there is no way to confirm this as a mechanism of what is happening in me. However, it’s a reasonable hypothesis based on this little “experiment”, my previous experiences, and my research on this. It’s also something I’ve suspected from the start of my journey in all this. There’s no doubt there are probably hundreds, if not thousands of reactions that could be involved in my “salivary gland pain” – but I feel fairly confident that in my particular case, iodine has something to do with it. The same felt true with my CNS symptoms, when I was controlling them with a little iodine. It’s truly amazing what a little iodine can do for my mood, not to mention clearing up some of the horrific CNS symptoms I experienced.
- Not only did my salivary gland symptoms improve with iodine, I did not develop all the other symptoms that occurred with my “Kombu/bean” experience. This suggests that Iodine alone did not induce those symptoms. So the title of this webpage, “Anatomy of an Iodine-Induced Flare”, may be somewhat of a misnomer at this point in time. Again, most people who have been diagnosed with “iodine allergy” are really sensitive or allergic to the protein(s) that iodine may be attached to in foods or accompanying (for example, shellfish and other seafood), and not the iodine itself. In this case, the Kombu would be highly suspect for me. Also note that in this situation, my thyroid gland is “shut off”, with presumably no TH production occurring, so “iodine-induced problems with the thyroid gland” should not be occurring. However, I do suspect that iodinated proteins, either exogenous or endogenous, are antigenic in me, contributing to my “autoimmune” issues. This also includes the iodothyronines themselves, including T4/T3. I have seen only a few references on this in the literature, and I’m surprised there isn’t more research being done on this. Perhaps those of us with intractable thyroid conditions are literally “allergic” to thyroid hormone itself (iodothyronines become antigenic targets) or TH attached to its protein carriers. If this is the case, this is pretty serious, given the absolute necessity of TH and its derivatives for life. It could also account for the severe and debilitating progressive symptoms some of us experience, no matter what we try.
- The fact that I was ON TH this time might have made the difference in me being able to tolerate a little bit of iodine without severe dramatic effects. Most thyroid folks are aware of the phrase “a little bit of iodine is like throwing gasoline on a fire for someone with Hashi’s” – and I would add “especially for someone with Hashi’s who is not on thyroid hormone medication support”. As a person with Hashi’s, I probably have thyroid nodules (adenomas) that may be highly sensitized to iodine, and prone to flaring. By being on medication, and “shutting the gland off”, I’m presumably stopping or at least decreasing the likelihood of this happening. This may not be the case 100% since adenomas often don’t respond to the normal feedback mechanisms. However, in my case, flaring decreased significantly, if not stopped completely, both times I was on TH replacement therapy. By providing a steady supply of T4/T3 regardless of this little bit of iodine, my TH supply remains stable. Although I know my antibodies were probably increasing as a result of taking this little bit of iodine, they probably weren’t “blowing up” in major autoimmune flares. The first time I was on TH, I also did a small (unintended) 50 ug trial of iodine for a while, and this is when I saw my antibodies increase steadily on labs – but I didn’t experience any flaring then. For people with thyroid pathology, an “uncontrolled axis” can cause major fluctuations in TH, Iodine, and antibodies, all of which can dramatically affect symptoms. This is essentially what happened with my “Kombu” experience. Now that I was back on TH and had a “controlled axis”, I wasn’t experiencing these major fluctuations anymore, but it still felt like “Iodine-Induced symptoms” were “building up” in me slowly over time. See the sections on Iodine Basics: Some Key Points and T3/T4 Basics: Some Key Points for further explanations on this. At any rate, had I NOT been on TH this time, perhaps I would have experienced a repeat of my “Kombu/bean” flare, meaning, perhaps my symptoms would have been much worse. Being on TH may have simply attenuated and delayed the process somewhat for me.
- Despite the fact that I was ON TH this time, I still experienced systemic problems even with a little bit of iodine. This is a reflection of how my “Iodine metabolism” felt shot, probably at the intracellular level. It had nothing to do with my “thyroid gland”, because my gland is shut off. I was able to tolerate 50 ug Iodine every other day, but symptoms still slowly developed and worsened, to the point where after about 6-8 weeks, I couldn’t tolerate them anymore and had to stop even this little bit of extra iodine. From my point of view, it feels very much like my cells are “starving for iodine”, but can’t get it or utilize it anymore (See Iodine: A Solution and a Problem For Me and Iodine: Can’t Live Without It; Can’t Live With It Now Either). This could be due to an “Iodine metabolism” problem, or “autoimmune” problem with iodinated proteins.
- Again, with my “Kombu” experience, my salivary gland and “pharyngolaryngeal” pain worsened. I thought this was due to an “iodine-induced flare”. Yet, in this latest experiment with iodine alone, my salivary and pharyngolaryngeal pain improved. Again, this implies my salivary glands actually needed iodine, but couldn’t get it from other sources (endogenous T4/T3 or other iodinated proteins). It’s like my “Kombu” flare either initiated further antibodies against endogenous iodine or iodinated proteins, or somehow through other processes prevented these cells from processing and/or utilizing iodine. Either way, I think in both cases my salivary glands needed more iodine. During the “Kombu” experience, taking more iodine simply made the vicious cycle I was in worse, to the point my symptoms became deadly within a few days. With this latest iodine attempt, my TH axis was controlled, my other potentially immunogenic dietary antigens were out of the way (beans, lectins, dairy, MSG, etc), and I could tolerate a small amount of additional iodine long enough for my salivary glands to benefit.
References of interest relating iodine with salivary gland:
Peroxidase-catalysed iodotyrosine formation in dispersed cells of mouse extrathyroidal tissues.
Endocrine control of extrathyroidal peroxidases and iodide metabolism.
Role of thyroid gland on the peroxidase and iodinating enzymes of submaxillary gland.
Iodide transport & organification in extrathyroidal tissues.