I started suspecting that the pain I often felt in my chest was thymus related the last couple of years. I had gone for a cardiac workup in an effort to rule that out to the best of anyone’s ability, and for the most part, had gotten a clean bill of health there, despite all my cardiac arrhythmias. I personally felt that all my cardiac issues were really TH issues, rather than a true cardiac pathology. The chest pain felt like a rock, or mass, just below my sternum, and was really exacerbated during the flares. The flaring made the cardiac issues worse, and it certainly felt like I was having a heart attack during these flares, so it’s easy to see why everyone, including me, thought this pain might be cardiac related. But as the major flaring slowly subsided in late Year 4 and into Year 5 post, it became apparent this pain waxed and waned due to other causes as well. In particular, iodine and T3 could make this pain worse, and the topical estrogen I was taking would do the same. At one point in time I was trying to increase the topical estrogen dose by just a little bit, and this really exacerbated this “rock in my chest” feeling, to the point I went to the ER. It was so painful at times that sometimes it was difficult to sleep, or, it would just wake me up if I was sleeping.
I felt like I got further confirmation that this “chest pain” was thymus related once I suffered from my Iodine-induced Subacute Thyroiditis attack. Now, as my thyroid gland waxed and waned with swelling and pain, so, too, did this “rock in my chest-pain”. Along with this chest pain there was additional pain and discomfort around that area, which is hard to describe. But ultimately, I started describing it as “inflammation pain”, spreading to my lungs, and I developed a chronic cough when I had it. I buprofen helped decrease this “chest pain and inflammation and cough” right along with my thyroid gland swelling and pain. It became very obvious to me how interrelated my thyroid and thymus gland were in this pathology I was experiencing with them.
There is a known association between Grave’s Disease (hyperthyroidism) and Thymic enlargement and thymic issues. The thymus gland is central in immunity and autoimmunity. The thymic transformation in patients with Grave’s hyperthyroidism is not completely understood, but the autoimmune processes underlying Grave’s disease are presumed to play a role. Research has also proven that there is expression of thyroid related genes in the thymus gland and that the normal human thymus shows marked immunoreativity for NIS (sodium-iodine symporter), TSH-R (TSH receptor), and Tg (thyroglobulin) and TPO (thyroid peroxidase) antigens. Myeloperoxidase, a peroxidase with sequence homology similar to thyroid peroxidase, is abundantly expressed in neutrophilic white blood cells, and I wondered if even these cells, and the tissues/organs where they were most accumulating (such as the thymus gland, and now, my thyroid gland), were somehow under attack. It’s an interesting thought.
More significantly, I strongly suspected that I had some form of Myasthenia Gravis, exacerbated by increased levels of T3 or a “relative hyperthyroidism”. As my symptoms have continued to progress over time, and are essentially classic for MG, this seemed like the most likely underlying diagnosis. On the other hand, it became increasingly clear towards the end of Year 5 post, that both my thyroid gland and thymus gland were highly reactive to just about anything I ingested, as well as the topical hormones. Both glands started with a “burning” feeling, on top of the pain, and which spread into my lungs. And when these symptoms started, all the systemic symptoms of a “flare” started as well, especially the tachycardia, the anxiety, the CNS symptoms, and sweaty feet. I started suspecting something like Mast Cell Activation Syndrome or IgG4 extreme hypersensitivity. I suffered yet another major flare towards the end of Year 5 Post, and this is when these symptoms developed in earnest. The problem was, even though I had severe pain in both my thyroid and thymus gland, there wasn’t any obvious swelling in either. It was getting harder and harder to convince physicians that I had a real thyroid problem going on (not to mention the thymus one) with no obvious swelling or goiter and normal serum values. I never thought I’d say this, but I think thyroidectomy and thymectomy are something I should consider; it’s become apparent they are a major source of antigenic stimulation. I’m losing weight from being unable to eat, and the pain in both glands and in my chest is tremendous, despite the fact I’m now back on thyroid hormone medication. I do also wonder about neoplasia (cancer) in this case. Cells and tissues that are unable to take up or utilize iodine are more susceptible to neoplastic changes and cancer overall.
As I said, the thymus gland is central to immunity and autoimmunity, and there is a known association between Grave’s Disease (hyperthyroidism) and Thymic enlargement and thymic issues. There is also a well known association between the thymus gland and Myasthenia Gravis, which is an acetylcholine (a neurotransmitter) related disease. Thymectomy, the surgical removal of the thymus gland (which often is abnormal in individuals with myasthenia gravis), reduces symptoms in some individuals without thymoma (benign mass on the thymus gland) and seems to “cure” some people of their symptoms; not all people, but enough that it is considered worth a try in some patients. I suspect there is a strong relationship between thyroid disease and acetylcholine-related disease, although the details of that are not known yet.
I discuss more about why I think acetylcholine-related issues are playing a role in my symptoms in Acetylcholine (ACh) – Related Damage and Update: June 2015. A good paper describing current clinical testing which exists for typical as well as less well known subsets of Myasthenia Gravis is Muscle autoantibodies in myasthenia gravis- beyond diagnosis Given the FDA February 2011 FDA Black Box Warning labeling change which actually states that “Fluoroquinolones have neuromuscular blocking activity and may exacerbate muscle weakness in persons with myasthenia gravis”, I think every FQ victim with severe muscle weakness should be tested for these, in particular, the lesser known subsets.
Although I suspect the pain and symptoms I was feeling in my chest were due to thymus issues, there is yet another possibility. As I mentioned here, some people have something called “Accessory Thyroid Tissue” or “Ectopic Thyroid Tissue”. This is where parts of thyroid tissue can be located anywhere from the very base of the tongue, down through the normal location of the thyroid gland at the base of the neck, and continuing down towards the thymus gland. Because of the locations of my symptoms, this could be another consideration in my case. I’m not sure, but I would guess a good ultrasound, or better yet, an MRI/CT of the entire area might help to rule this in or out. In my case, I did get an MRI done of my chest during my ER visit to rule out a pulmonary embolism as another cause of my “rock in the chest” pain. At that time, there was no thymoma (benign thymus tumor) and no ectopic thyroid tissue in that particular area was seen or mentioned on the report (although perhaps tiny ectopic thyroid adenoma’s might not be seen; I’m not sure how sensitive the MRI would be in picking those up). Because I’ve never had any obvious swelling, I never could get a thyroid ultrasound done through my doctors, and I’ve never had an MRI/CT of the pharyngeal/lingual area (and any other tests with iodinated contrast would be out for me). I don’t know if these would show anything, but the “deep lingual area”, or “base of my tongue” area, just as with the thymus area certainly is symptomatic in tandem with my thyroid symptoms (possible lingual thyroid). (Interestingly enough, “Pharyngolaryngeal pain” is also a known side effect of TKI’s, which I discuss here).