I don’t take the decision to start on thyroid hormone medication lightly. Both times I did so, I did it as an absolute last resort. For me, it was a life or death decision. Both times, all my serum values were normal, meaning my TSH, and fT3/fT4 serum measurements were well within range. Looking back, I do wish I had continually monitored total T3/T4 as well, in an effort to try and see patterns between bound and free hormone, thereby potentially seeing what role, if any, that binding proteins and globulins might have been playing in all this. At any rate, my frees were normal, and once I started TH, serum values actually didn’t change that much. What did change were my symptoms and my antibody status though. The first time I started the meds made all the difference in the world. I was able to start riding my bike and walking several miles, and started doing laps at the pool again. Supporting T4 and T3 put an automatic “floor” for the neuropsychological symptoms as well, clearing up the mood swings and depression that came with those lows. Providing a full replacement dose of exogenous thyroid hormone shut off the thyroid axis, thereby shutting down much of the antigenic TPO/Tg production, and therefore, the antibody production for these as well. The second time I started the meds, which has been only about 4 months ago, there also was a dramatic difference in that it cleared up my incapacitating vertigo and again, the psychological ramifications of those lows. However, my other flox symptoms had apparently progressed significantly during the two years I had been off medication, and now became apparent in sharp relief once I started the meds. My iodine sensitivity had increased significantly, to the point I can’t tolerate the slightest bit of iodine beyond what I get in my very limited diet while I’m on the meds. I question as to whether or not I have solitary or diffuse autonomously functioning nodules, which react to iodine and spit out hormone, putting me into the “hyper” state quickly and dramatically, or even whether or not I have thyroid cancer. My thyroid gland is quite painful, and is reacting to the thyroid hormones, estrogen hormones, iodine, and who knows what else. It’s even more difficult to regulate my dosage and maintain some kind of homeostasis than it was the first time as a result of this and the underlying flox issues which are complicating the matter. So I don’t think taking medication alone this time is going to take me anywhere near as far as it did the last time. I’m definitely not riding my bike, walking miles, or swimming. Still – it was my last resort, and it did address some of the intolerable symptoms I was experiencing. The incapacitating vertigo, and all the other symptoms that went with it, were a deal breaker for me. I knew I couldn’t live with that again. So for better or worse, I’m once again on thyroid hormone replacement therapy, a combination 95%T4/5%T3 synthetic.
There are many people out there for whom thyroid hormone replacement is a lifesaver. Whether they are taking name brand or generic, synthetic T4-only, synthetic T4/T3 combo, or any of the NDT’s, many people find something that works for them. Having said that, I’m of the opinion that nothing beats having a fully functioning and healthy thyroid gland. Taking lump sum doses of thyroid hormone once or multiple times daily will never replicate the finely tuned nuances of a normally functioning thyroid axis. When pressed, many people who say that they’re 100% “back to normal” after starting thyroid meds, will qualify their answer and say yes, there are differences, and it’s not 100% equivalent. I’m of the opinion that once your thyroid truly konks out, you are never the same. Meds can help a lot, and make you feel pure relief, because AITD and hypo and hyper thyroidism are such hell to live with. But it’s never really the same as having a working thyroid axis. So I think if there’s anything at all you can do to help preserve, protect, and support your naturally functioning thyroid axis, then that’s the first choice in all this. I think deciding to go on thyroid medication should be a thoughtful choice, and the last resort. Unfortunately, I also think that anyone who has been floxed, has the potential to develop thyroid problems, or exacerbate existing ones, either acutely or as part of a delayed reaction. So I believe flox victims are always at risk of becoming symptomatic for thyroid-induced pathologies. Which is basically why I wrote this website.
There are a lot of good websites and information out there on thyroid health. Lots of controversy exists over how to diagnose, and then treat, thyroid disorders appropriately. So it can be confusing. Ultimately, only you can decide if your symptoms are bad enough, that you’ll consider treatment. There’s so much information out there, that I’m not going to go into that kind of detail here. Instead, I’m going to focus on just some general recommendations I have for flox victims, based on what I’ve learned.
Please read my disclaimer here:
The first thing I think is important for every flox victim to do is to run labs. If you’re in the acute stages, getting a full thyroid panel baseline for future comparison is important. I think this is important even if you are already on TH meds. Then test twice a year for the first couple of years, or if your symptoms take a turn for the worse or progress. The basic panel I would run would include TSH, fT3, fT4, and ALL the antibodies – if you’ve read the rest of this website, I hope it’s clear why. This means testing for TSI, TrAb, TBII, TgAb, TPO. I also would run an iodine spot test. Test for minerals: RBC Magnesium, Copper, and Selenium. Test for Vitamin A and D. If you can afford a total T4/T3, throw those in. Run a saliva cortisol test. Get a glucose meter and test yourself as recommended here (Blood Sugar 101). I also would request thorough sex hormone testing from your physician. Remember, many flox victims have abnormal glucose/insulin, Vitamin D, and sex hormones – and the receptors for all these as well as thyroid hormones are all related, and in one of my hypotheses, may be affected by the FQ.
Be aware that if you have any anti-thyroid antibodies at all, then using TSH as a screening tool of thyroid health is less reliable, as I wrote about here. Also, as you do your research, you will read about where the “ideal” serum levels that your thyroid hormones should be. Be aware that this is a very individual thing, and the “ideal” serum levels for you are where you are asymptomatic or, at a minimum, don’t make your flox symptoms any worse. As I’ve stated earlier, I do best with my frees around 30-40%, and trying to “push” them any higher than that now, really exacerbates my floxing symptoms. I have a perfectly healthy athletic friend, who is not on any thyroid hormones at all, with a TSH around 1.0, and both frees in the 25-30% range consistently. Any patterns that I mention below are just that: patterns to be aware of, but not set in cold hard stone for everyone.
If you’ve been floxed, are symptomatic, and you DON’T have any thyroid antibodies, I would NOT consider thyroid meds at that time, even if your TSH and frees are a little off. Instead, I would use a healthy diet, with reasonable supplementation if necessary (ie, you are low on iodine or selenium or Mg) to support your thyroid and entire body while you wait it out to recover. I tend not to recommend “super doses” of any one supplement, and in general, I recommend using as few supplements or meds as needed to get you through the acute phase and rough spots. Monitor your labs over time, and hopefully your symptoms will abate over time while your thyroid labs improve. Although I agree a healthy low glycemic diet is a good idea, my own position on this to make sure you still include some healthy carbs – 100-150 gms a day unless you already know that very low or no carbs is healthier for your personal physiology (it wasn’t for me, which is why I’m mentioning this). For people who can tolerate carbs, I think carbs are important to help keep glucose receptors upregulated and functioning, along with insulin production, and to help keep serotonin levels up.
Continuing with if you DON’T have any antibodies: If your T3/T4 are obviously out of range, either too low or too high, and are only continuing to get worse, and you’re symptomatic, that’s the only time I would start thinking about a trial of medication. There’s no hard and fast rule about this, and unfortunately it’s one of those things you’ll just have to try to see if it helps. In this case, if your values are obviously out of range, I would think that you’re going to have your physician’s support on this. Either way, you will be making this decision with some kind of medical practitioner, as you will need a prescription for thyroid meds. The rationale behind this is that if you are too low or high on TH, that’s going to affect all the other cells of your body. Remember – TH is needed by virtually every cell of the body for growth, maintenance, and repair, and that includes mitochondria. Without TH, there won’t be a lot of “repairing” and “growing” going on and you may not be giving your body the best chance to recover without it. Having too much TH definitely negatively affects your cells and body too, so again, if your results are obviously out of range too high, AND you’re symptomatic, then consider trying to lower them with meds or supplements. Read through this website to be aware that in some cases (like my own), “pushing” the thyroid hormone, especially T3, exacerbated some underlying problems in me, (possibly myasthenia gravis-like syndrome or mitochondrial disorder), suggesting that my lower (but always within normal ranges) levels of TH were compensatory in nature to some extent.
If you’ve been floxed, are symptomatic, and you DO have any of the anti-thyroid antibodies, especially out of range ones, you have some harder decisions to make. There is no way I can go through all the iterations that exist for thyroid pathology, but here are some general ones that I can cover.
The first approach is to leave well enough alone and see what happens as in above. You may improve symptomatically, no matter what your antibody status. Be very aware of the potential effects of iodine if you have antibodies, in particular, the TPO ones. I would not blindly start supplementing with iodine in any case without knowing my antibody status first, and taking that into consideration. Many traditional physicians won’t recommend any treatment if you have the antibodies, but your TSH and frees are within range (this was my situation). Holistic and functional medicine practitioners will often do at least a trial treatment if symptoms exist. It’s a hard call either way: I lost a lot of ground and became progressively worse while waiting and not treating both times I did so. But it’s one of those situations where you won’t know if you’ve made the right or wrong choice until after the fact. No one really knows, no matter how much they profess to know. If you get anything out of this website, it’s that thyroid pathology is extremely complicated and individual. Remember, if thyroid problems were a “simple fix”, there wouldn’t be hundreds of websites and millions of unhappy thyroid patients out there. I would recommend learning as much as you can though, and continually monitoring your antibody status as you make dietary changes or try supplements. If you’ve been floxed and you have the antibodies, there is the possibility that this is a transient problem, and that things will right themselves over time as the rest of you recovers.
If you are symptomatic and your TSH is kind of on the lower end of normal or below normal, and your total or free T3/T4 are above the normal range, and you have the TSI antibodies out of range – this is classic and clear cut for Grave’s disease or hyperthyroidism. Hyperthyroidism can be a naturally transient phenomenon, so some physicians will recommend waiting it out, rather than treating, for milder cases. I think this potentially transient nature of hyperthyroidism is something to be really aware of, and if you’ve read this website, you’ll understand why I think that part of an acute flox reaction may contain a thyrotoxic (hyperthyroid) component as part of that reaction. Read and learn all you can about Grave’s disease, and be aware of the possibility of TED (Thyroid Eye Disease) as well that can occur with Graves so you know what to look out for. Also be aware that a transient case of Graves can recur (relapses) regardless of the initial cause, and/or eventually burn itself out into hypothyroidism down the line – it could be weeks, months, or years later. You can take traditional medication for this, or, there are some natural supplements available for this as well. Knowing what I know now, and as a flox victim, I would try the natural supplements before the traditional meds, titrating only to effect. (See “Dietary Considerations and Supplements“). I’m not sure what I would do with iodine in this case, and everyone’s case is different: read the “Iodine Basics” sections for more information. Larger amounts of iodine were used in the “old days” to treat hyperthyroidism, but I admit, I just don’t know what I would try in this situation. I do believe that in this case the thyroid gland and other cells of the body do need iodine despite the flaring gland, so getting at least the RDA would probably be a good idea, even if it exacerbates the situation somewhat temporarily. Whatever you decide to do, if you decide to treat, then I would definitely continue to monitor with labs while doing so, as that will give you some additional information about what your treatment approach is doing for you.
Another possible scenario to look out for, is if your serum T3 is much higher than your serum T4. I mention this because of my particular response to this situation, which I’ve covered in several places on this website. I have reviewed a few other flox victims data who also experienced severe symptoms when their T3 and T4 were in the normal ranges, but T3 was high, and much higher than T4 (55%T3/14%T4 and 60%T3/28%T4) . In my case, and in both of these other cases, there was severe burning neuropathy and “electric shock” like pains going on along with the anxiety, tachycardia, and CNS symptoms. This would resolve in me if I could lower my T3, or lower both T3/T4 a bit overall. Please remember that many (non-floxed) thyroid patients on NDT who are thriving and doing great show this pattern because that’s the nature of being on NDT. And there are probably non-floxed “normo-thyroid” people with this pattern as well. But if you are a flox victim, AND you have this serum pattern, AND you have these severe symptoms, it’s something to keep in mind.
Be aware that if you have Hashi’s, there are all different levels of severity that can occur. I suspect I lived with a “subclinical” or “silent” case of Hashi’s pre-flox, and for the most part, I was fine. I know some people with Hashi’s that take one T4 pill a day, and some that take Armour, and are totally fine and thriving. Others, such as myself post flox, are struggling no matter what we try. People with HE (Hashi’s Encephalopathy) can have symptoms such as full body seizures or be comatose. If you’re totally asymptomatic and you find out you have the antibodies, don’t freak out. Just be aware you have them and start cleaning up your lifestyle and monitor over time (and never take an FQ!). Hashi’s as a diagnosis really represents an enigmatic systemic “syndrome” of effects that in reality, little is known about. The antibodies are simply the “biomarker” for some kind of thyroid hormone/Iodine metabolism problem somewhere. If you’ve got all the antibodies (both Hashi’s and Grave’s), as I do, be aware that your journey will probably be harder overall. For anyone with antibodies, the thyroid gland will most likely always be sensitized to triggers, and therefore flares, and you’ll probably be spending time trying to figure out what those triggers are whether you want to or not.
As far as the different types of medications: everyone has their favorites. Some people do great on synthetics, and some people feel like death warmed over on them. Some people do great on NDT, and some people can’t tolerate NDT at all. One thing to be aware of, is that it doesn’t matter what the medication is, the T3, and T4 in it, are always exactly the same. It doesn’t matter if T3/T4 come from your thyroid gland, synthetic medication, or NDT: the molecular structure of T3 and T4 are always the same. So that’s not really the issue in terms of differences in brands and synthetics vs. naturals. What is different are the fillers in the synthetics, and all the other substances in the Naturals. There is no doubt that some people can’t tolerate different fillers, and therefore different brands, of the synthetics. NDT is basically ground up and dried thyroid glands, usually from pigs mass produced in our factory farms, probably fed antibiotics and other hormones in an effort to make them grow faster and make it to slaughter intact. If you’re a person that truly believes that FQ’s or any other toxins accumulate in the thyroid gland, you may want to avoid the “naturals”. It’s hard to say how “natural” the NDT’s are anymore. In my case, taking just ¼ grain of NDT set off severe CNS symptoms in me within minutes, that felt like some kind of autoimmune or hypersensitivity attack. This makes sense if I think of ground up Tg and TPO, along with the other iodothyronines, calcitonin, free iodine, and other substances in there. Supposedly NDT Tg and TPO are not supposed to be antigenic to human antibodies, but based on my own experience, I would question that in my case. Again, I am not against NDT at all as evidenced by this write up here: (Armour Iodine Protocol). And I know of a number of flox victims who have done quite well on NDT as well. As with everything else thyroid, learn as much as you can about your options if you’re considering treatment. And remember, with anything you try, the only person that knows which approach is best for you is you – because your body and symptoms will tell you.
Cortisol and Adrenal Issues
Sooner or later, anyone researching thyroid problems and treatment will come across cortisol as an adjunctive treatment for refractory thyroid cases. This is most commonly presented as help for “Adrenal Fatigue”. It’s very true that there is a very close relationship between all the endocrine organs, in particular, the adrenal and thyroid glands. It’s also true that starting on thyroid hormone can “unmask” some underlying conditions, including Addison’s Disease, which is full blown adrenal gland failure (the glands stop working completely versus partially as in “adrenal fatigue”). I also believe that FQT is a severe endocrine disrupter, possibly inducing a transient or permanent “Polyendocrinopathy-like Syndrome”, in particular for the steroid and thyroid hormones. These hormones not only have releasing factors and feedback mechanisms that are commonly pituitary based, but also share commonalities among their receptors in the Steroid Receptor Superfamily and in their Hormone Response Elements within all somatic cells and mitochondria. Affecting one hormone will affect all the others in a cascading effect, making it difficult, if not impossible, to determine where the true primary problem lies.
As I’ve made clear, I don’t take the decision to start on thyroid hormone treatment lightly. I have even more concerns about doing this when it comes to the adrenal axis. I tend to agree with this author (Recovering With T3) that once the thyroid axis is corrected, there is a chance that adrenal issues will resolve themselves over time. The adrenal cortex has a large number of iodine receptors, implying the need for this critical element, and is very responsive to T3 as well. If you are a person who can tolerate taking iodine, T3, or NDT, then I would give your adrenals a chance to respond before jumping into cortisol treatment. As with the thyroid gland, I think if there’s anything at all you can do to help preserve, protect, and support your naturally functioning adrenal axis, then that’s the first choice in all this. As with TH treatment, I think deciding to go on cortisol medication should be a thoughtful choice, and the last resort. And as with thyroid meds, it should also be done only under the care of a physician or experienced practitioner.
Again, it’s a fact that starting TH meds can “unmask” underlying conditions such as Addison’s Disease or Myasthenia Gravis. So this is something for both you and your physician to be aware of when starting TH treatment. Hopefully you and/or your physician will have run at least a saliva cortisol test and WBC to get an idea of how well your adrenals are functioning before starting TH treatment. If most or all values are low, I would use extreme caution when starting TH meds. Obviously, if you end up in an Adrenal Crisis, then cortisol is warranted. It would be dangerous for you to live without it in this case.
If most or all values continue to be low despite being on an appropriate dose of TH meds, but you are improving symptomatically, review dietary and supplement regimens that can help support adrenal health. There are plenty of websites available with this information. As always, learn as much as you can and take a thoughtful and careful approach to whatever you try.
If most or all values continue to be low despite being on an appropriate dose of TH meds and you feel you’ve tried everything else, AND you continue to be symptomatic, this is another time a cortisol trial would certainly be considered worthwhile.
I monitored my adrenal status continually using the 6-point saliva tests, as well as serum ACTH, cortisol, and anti-adrenal antibodies. I’ve fretted about cortisol and adrenal fatigue throughout this entire ordeal, always keeping this possibility in mind for myself. I’ve wondered if I can trust the “normal results” I’ve always gotten; after all, my thyroid TSH/frees have always been normal too. I’ve worried about this not only because of all the websites and thyroid groups promoting cortisol and supplements for adrenal fatigue, but because I believe the FQ’s to be severe endocrine disrupters in general, potentially damaging some of the common receptors or hormone response elements that the thyroid hormones and steroid hormones share. I think it’s a legitimate concern.
The first time I went on TH meds, I didn’t feel that my adrenal status was an issue. Once I got on an appropriate dose of TH meds, I didn’t have fatigue as an issue. My adrenal tests all came back looking good, and when I tested again after being on TH meds, I got virtually “perfect curves” on both my adrenal and neurotransmitter tests. As I’ve mentioned elsewhere, I’ve also never been prone to infections, rarely got sick beyond my annual colds, and my white blood cell counts and electrolytes always looked good on labs. This continued to be true post flox as well.
The second time I started on TH meds (which was only several months ago at the time of this writing), it’s been a different story. I could tell that some underlying condition, either something like Addison’s, MG, Mitochondrial, an autoimmune/hypersensitivity condition, or something else related to “floxing”, was coming into play. It became clear that addressing the thyroid issues, although once again helping with several symptoms, were not going to address all of them, and in fact, were exacerbating some symptoms. In my particular case, I think there is a massive autoimmune component now going on, and in traditional medicine, large doses of Pred are of course the first line of defense and trial to be used. Unfortunately, this approach is just another treatment trial that all flox victims have to be very wary of, because of the severe tendinopathies and potential for tendon rupture that can occur with steroid use during or after being floxed.
So I’ve been fretting again. Cortisol is one of those things that’s within my control to change, so I’m experimenting with it a bit to see what happens. There’s no doubt it helps with some of my current symptoms, but as with all the hormones, it also exacerbates others. It definitely increases my tendon pain, and in particular, my eye pain. This confirms to me again how interrelated my floxing and TH/Steroid hormones are, and suggests to me the commonalities of the TH/Streroid receptors and Hormone Response Elements as playing a part in my floxing damage.
As with thyroid hormones, my case is difficult because all attempts to objectively determine adrenal status come up “normal. Still, because of some of my symptoms, I’m still keeping an open mind to this possibility. Adrenal insufficiency develops over time, usually waxing and waning, and it can be a “long, slow, miserable trip down”, fraught with misdiagnoses until a person ends up in the ER on their deathbed when complete failure occurs. If lack of cortisol, or a developing partial adrenal cortex insufficiency is in fact an underlying issue in me, then hopefully I’ll figure that out over time with my trials. If it’s not, then I’d really prefer let my own axis take care of my cortisol needs, because, as with all the endocrine systems, nothing beats having a working, functional, endocrine axis.
Of course, what I really feel like I need is iodine. The adrenal glands have a high expression of receptors for iodine, implying a high need for iodine in this organ. Is it possible that my lack of iodine is contributing to adrenal issues and lack of cortisol? Or is lack of cortisol contributing to my inability to get and utilize iodine (and/or T3)? Once again, it’s very circular because of the interdependencies, making it very difficult to determine what and where the primary damage is when it comes to the endocrine system.
For those interested in reading about the thyroid and adrenal hormone connection from a leading endocrinologist who was at the forefront of steroid use after their discovery and synthesis, I recommend the book “Safe Uses of Cortisol” by William McK. Jefferies, M.D., F.A.C.P. It’s a hefty read, geared more towards physicians and researchers. But for those so inclined to read such texts, I think it’s well worth the read.