There are a lot of other websites and forums dedicated to floxing, thyroid conditions, and autoimmune conditions which discuss diet and supplementation. I leave it to those websites and forums to provide the details of that information. Most of them seem to recommend some version of the whole food, organic, raw, low glycemic, or Paleo Diet or specific carbohydrates, if carbs are included. Numerous supplements abound for mitochondrial, thyroid, and floxing support.
In my case, I discussed how I felt that most of my dietary issues were due to Iodine in “My Food Sensitivities Were Due to Ingested Iodine Post Flox”.
There are several websites dedicated to the use of iodine for thyroid and other health issues, and I believe there is a flox forum for people experimenting with iodine as well. If you are interested in iodine supplementation, there is plenty of information available on the internet about the various types. I used two forms of iodine to get the lower dosages I wanted: Lugol’s iodine, and potassium iodide in a multivitamin tablet. Potassium iodide supplements in the form of Kelp tablets usually had about 250 mcg iodine in them and were not easy to break into the dosages I wanted, so for the most part, I didn’t use those. Lugol’s Iodine can be ordered off the internet or purchased from holistic or functional medicine doctors. The nice thing about Lugol’s is that you can dilute it to any concentration you want into reliable, repeatable doses. I could literally take 1 mcg at a time if I wanted, using a 1 mL syringe. I’m sure you can get information from the internet sites and forums on how to dilute to whatever concentration you want. It’s easy enough and pretty safe to start with tiny microgram doses to see how you feel if you want to test yourself with iodine. Remember, 150 mcg is the RDA (Recommended Daily Allowance) by the government, and many people who experiment with iodine take much much more than this (milligram amounts). So testing yourself for a few days with 10 mcgs isn’t going to hurt you, even if you’re a flox victim. On occasion, I used a multivitamin tablet that has 25 mcg in it. I would split the tablet in two, or even quarters, to get about 12.5 and 6.25 mcg iodine.
Having said all the above about Iodine being my main food sensitivity, I also came to believe that other food sensitivities may have existed as well, especially when I was OFF thyroid hormone medication. Many foods which are safe for healthy thyroid glands can potentially negatively affect or aggravate existing thyroid pathology. Some of these include soy (genistein inhibits TPO), gluten (association between AITD, Celiac, and glutamic acid), and lactoperoxidase (LPO) and myeloperoxidase (MPO) –peroxidases in the same family with functional and structural homology to thyroid peroxidase (TPO) are in dairy products and could be potential additional antigenic targets. In addition, many flox victims report a sensitivity to glutamate/glutamic acid, and I strongly suspected this to be true within myself as well (which means yeast extracts, and umami/MSG are out). In Year 4 and 5 post March 2010 Cipro, I was OFF thyroid hormone medication, and my food sensitivities increased greatly, to the point I felt like I was on the “everything free” diet. I could hardly eat anything without feeling my symptoms, in particular the CNS symptoms, worsen almost immediately. I attributed most of this to iodine due to my TH/Iodine pathologies, and maybe glutamic acid and/or other amino acids, as I was dairy free and gluten free.
As I mentioned elsewhere, I did not feel like I had “leaky gut”. Topical iodine, along with other topical steroid hormones and even topical magnesium, seemed to have equal effects on me, basically ruling out a strictly gut oriented reaction for these substances. In Year 5, now that I’m back on thyroid hormone medication again – I am feeling these immediate (within a minute or two) reactions as soon as I started eating. Eating any food immediately stimulates all kinds of hormones and biological reactions in the body in preparation for digestion of food. I’m questioning whether what I’m experiencing is something like insulin or acetylcholine (or any number of other metabolic processes that are triggered immediately by food and eating) hitting damaged receptors in my brain and muscles and other high energy tissues, for example. Many of the receptors, transporters, enzymes, and signal transductions processes that I focused on as potential underlying mechanisms in FQ toxicity are located systemically throughout the body. Examples of underlying commonalities to thyroid hormones and steroid receptors include substances such as acetylcholine, glutamate, adenosine, phospholipase C, cAMP, G-protein receptors, and probably a thousand other potential substances and targets. These will probably all be active to some extent throughout the GI tract along with other organ systems, with some being more active than others in the “gut”.
Another mechanism I’ve been considering is Mast Cell Activation Syndrome, Eosinophilic Esophagitis, and IgG4 hypersensitivity reactions, all of which can occur immediately when eating. This is something that I have been considering in the last year or so, in particular for these “flares” that I experience. The progressive symptoms I’ve been experiencing seem to match many of the descriptions I’ve been reading about, and certainly these responses are very “on/off”, immediate, and dramatic. Although they can occur immediately after eating, Mast Cell Activation also can occur randomly. I do not believe that iodine itself is toxic. However, I do suspect that iodinated proteins, and any intermediate metabolites with reactive iodine, could be targets. This would include, for example, the haloperoxidases and their intermediates, with TPO being the obvious target in me. After that, I would suspect glutamate, glutamine, and glutamic acid residues as targets, or possibly aromatic amino acids and/or branched chain amino acids. It turns out that all the haloperoxidases also each contain a heme prosthetic group bound to aspartate and/or glutamate side-chains – which seems like these could be antigenic targets as well. Of course, any number of proteins in the body could be a target for hypersensitivity or autoimmune reactions.
Again, there are many websites full of information about supplements available for thyroid, autoimmune, and floxing patients. I tried many of these during my five year floxing ordeal. I tend to view supplements pretty much the same way I view pharmaceuticals: they target the same receptors, tolerance and receptor up and down regulation occurs as a result of them, and if it’s not something I can get from my diet, I’d rather not be on them permanently unless absolutely necessary. I found I was as sensitive to supplements as I was to pharmaceutical drugs when I was OFF thyroid hormone meds. When I was ON thyroid hormone meds the first time, this sensitivity cleared up quite a bit, and I could tolerate them more, but they wouldn’t help me as much either. On the other hand, I am back on thyroid hormone medication now, and I feel like my sensitivities to foods and supplements are still in full force, so I’m admittedly pretty wary of trying things at this point in time.
I’m not going to cover all the supplements I tried. Here, I will just cover the ones I used to help alleviate my “flares” – which in my case, appeared to be partly or fully thyroid hormone related. There are a few natural approaches one can use to affect thyroid hormone levels, ACh-related issues, and glutamate/GABA issues. I chose these because their effects are supported to some extent in traditionally based research studies. These are the ones I used very sparingly.
- Bugleweed Extract: I used this to lower T3 in flares. I used it very sparingly, only a few drops at a time, and titrated to effect (see below), because it also lowers T4. According to some research, supposedly it also addresses antibodies; if this is true, that’s great. I used it just to take the edge off my flares. Keep in mind the “rebound effect”, which can make flaring worse. Search “bugleweed + thyroid hormone” on PubMed.
- L-Carnitine: I did not use this; however there is published research stating this impairs TH from entering the cell nucleus, and has been used in cases of hyperthyroidism. See below for some references, or search “L-Carnitine + thyroid” on PubMed.
- Lemon Balm: Also affects TH, but can use for the ACh system as well. Search “Lemon Balm” on Pubmed.
- L-Theanine: For the glutamate/GABA issues. I did not use this much, for the same reason I didn’t want to use benzos much. Search “L-theanine + glutamate” on PubMed. Be aware of potential tolerance and addiction with L-Theanine, as with all GABA modulators/agonists.
I used a supplement called “ThyroSoothe®” from Native Remedies which I purchased at Whole Foods. It contains Bugleweed, Lemon Balm, and Motherwort. The main thing I can say about it was that it really worked, and I wish I had known that during my acute reaction and during the early years post flox. Of course over time, I came to believe that much, if not all, of my “flare symptoms” were “thyrotoxic” (ie, hyper in nature), and so I went looking for substances that would alleviate the more immediate effects of T3 on me. It turns out there are any number of pharmaceuticals and substances that can suppress the thyroid axis either transiently or permanently. For example, benzos and Lithium can suppress T3 or the utilization of it (among their many other actions). There was no doubt benzos worked for me; they were the only thing that got me through some of the tough times. But once I became aware of the possible TH connection to my flares, I went looking for some alternatives. This is what convinced me to try bugleweed and lemon balm.
The thing to remember about these particular supplements (Bugleweed, not L-Carnitine) is that they “bind up” thyroid hormone. This means they literally pull T3/T4 out of your circulation. This is how they lower the T3 and T4 in your bloodstream. This is important to know for people with hypothyroidism, or people on medication. If you take these supplements, they have any number of effects, but one of them, according to published research, is that they will remove T3 and T4 from your bloodstream. So if you’re already hypo, you can make your situation worse if you take too much of these, or if you take it too often. So this is one case where for the most part, you won’t want to take these supplements. If you’re on medication and you use these supplements, you will be putting TH into your bloodstream, but then removing some of it with these supplements. So under normal circumstances, taking these supplements while you’re on thyroid hormone doesn’t really make much sense either.
Of course, if you are frankly hyperthyroid (meaning you have all the symptoms and your labs support it), then these supplements can be used to lower the T3 and T4 in your blood stream, which would be your goal. In this way, they kind of act like the traditional medications one would use to treat hyperthyroidism (methimazole, carbimazole, and propylthiouracil). Bugleweed may also lower antibodies, which is a good thing in this case; I’m not sure of the mechanism for this though. Knowing what I know now, if I developed frank hyperthyroidism, I would try the supplements before the traditional meds. The traditional meds, and other options, are always there if the supplements fail.
I had Hashi’s, which meant I was fluctuating between the “hypo” and “hyper” state constantly. Because I had such a narrow therapeutic range for thyroid hormone (just a few micrograms either way put me in either state), and all the antibodies, I was extremely sensitive to changes in T3 and T4. This meant I could NOT use these supplements regularly, often, or in large amounts. They would make me go “hypo”. But I COULD use these supplements in very tiny, controlled amounts, to take the “edge” off of flares that were occurring, in particular, the T3 flares.
As I said, I wish I had known about all this while I was in my acute phase, as well as after. Once I finally figured it out though, here is how I used the ThyroSoothe®.
Please read my disclaimer here:
When I would feel a flare coming on, I learned to take just a few drops at a time of this supplement, and “titrate to effect”. “Titrate to effect” means I only used enough to alleviate my symptoms. In my case, this meant taking 3 drops mixed in water every 15 minutes until I could feel some relief of my symptoms. I usually only took the drops once, or twice in a half hour period, or at most, three times in a 45 minute period. This is what it means to “titrate to effect”. In my case, because I was so sensitive to changes in TH, this is all it took. The effects of these drops were immediate and dramatic. Many times, within a minute or so, I would get a few heart palps as it “hit my circulation” and presumably bound up TH right away. And many times, within 15 minutes or so, I would start feeling some relief after that. Because I had Hashi’s, and because I already had a tendency towards being “hypo” overall, I was very, very careful using these drops. I tried to use them as little as possible. Part of the problem for me was going to be the “rebound effect”. If I went “too hypo” as a result of taking these drops, I would then get a potential “rebound effect” or another flare, if the cells of my body felt like I was getting too low. So I was always aware of that, which is what limited me in using these drops.
When I started on TH meds the second time, it became apparent that other underlying floxing problems were surfacing, and that my sensitivity to TH overall had increased even more. I was increasing my dose very slowly, only a few micrograms at a time, because of this sensitivity. Despite this, as I was ramping up on my dose, there were a couple of times I was getting “too high” anyway, becoming extremely neurologic. I did use the drops effectively again to help lower my serum amount of T3 and T4 a bit, and help alleviate my symptoms a bit. Again, I only did this only when desperate, and when I lost “homeostasis”. I don’t recommend it as a regular practice at all for people taking medication.
The instructions on the bottle said to use 0.5 mL three times a day for most cases of hyperthyroidism. I think I measured 0.5 mL as being the equivalent of about 15-16 drops. So the instructions on the bottle were saying to take about 45 drops of this stuff a day. Note how I usually felt effects at 3, 6, and at most, 9 drops at a time, once in a day. I never took more than 9 drops. I took just enough to alleviate the worst of my flares. Again, this is because of my own personal sensitivity to changes in TH, and the fact that I had Hashi’s and was “hypo” overall as a result – and I didn’t want to make myself more hypo or by using these drops. For people who are frankly hyperthyroid, or not as sensitive as I was, they could easily end up using much more than I used. The point is, everyone’s circumstance will be a little different. This is why I think it’s important to titrate to effect.
For flox victims who are in the acute phase with symptoms of racing heart, palps/arrhythmias, anxiety, peripheral neuropathies including “electric shock” like symptoms, CNS symptoms, and eye issues, I always wonder if there is a T3 or Iodine toxicosis going on as part of that reaction, or frank hyperthyroidism in the form of Grave’s disease. I wonder if careful and judicious use of these supplements might help with the initial reaction. This is why I think it’s important to run a full thyroid panel, in particular, for all the anti-thyroid antibodies (especially the TSI/TrAb ones). If you’re going to use supplements like Iodine or Bugleweed/Lemon Balm/Motherwort – run labs and know where you stand first. Make sure you use a lab that will give you an actual TSI percentage value even if that value is under the typical 130-140%. Then use a thoughtful approach with small trials to get a feel for how these substances affect you (and your thyroid gland). If at least part of your reaction is thyrotoxic in nature, then using these supplements in a careful and judicious manner may help your symptoms to whatever extent. I guess it will depend on if your reaction is more “TH based” or due to something else entirely.
For an interesting account by another flox victim who successfully used Bugleweed through his/her acute flox reaction, see “Darby’s” story in “FQ Story quotes 7 thyroid”. I’m not sure about the caffeine and how that plays into all this, but it worked for that person.
Always research supplements to see how they’re going to affect the thyroid gland. I think Alpha Lipoic Acid (may lower T3) and L-carnitine (impairs TH access to cell nucleus) are other supplements to be aware of. In fact, L-carnitine is another supplement that has been used in cases of hyperthyroidism (here, here, and here). Note that the known mechanism of L-carnitine affecting TH status is different than that of Bugleweed. Something that I have considered, is that this may have implications for serum TH levels, at least in the immediate or short term. For example, serum TH levels may decrease when taking Bugleweed because this supplement literally “binds up” TH and excretes it, essentially pulling it out of the blood stream. On the other hand, serum TH levels might not decrease, or might even increase, even as symptoms of hyperthyroidism decrease, while on L-carnitine, because carnitine is blocking utilization of available TH at a receptor level. I’m sure any number of scenarios are possible, depending on the particular pathology of the TH system that’s going on as well as the effects these supplements have on other systems. But I bring up these possibilities as examples of utilizing the knowledge we have in thinking about what to expect, not only symptom-wise, but lab wise, when taking these supplements. If your thyroid gland is functioning well, or you’re supporting your serum levels with TH medication, you can probably use these safely. I usually read whatever comes up in a Google search, PubMed, and Amazon reviews for supplements and meds I’m researching. Reviewing all the pros and cons opens the door to uncertainty because there are so many different opinions. But at the same time, I will often see patterns, and can make my choice based on those patterns for my own particular situation.