Living with Graves’s Disease, the start of my journey to recovery

I’m starting this blog as I want to contribute my own personal experience with Graves’ Disease. I’m not saying that everyone will get the same results that I will but I do want to give hope for others going through this to not give in or give up and that your body can heal itself. I feel fortunate with own success thus far and want to encourage people who think that conventional medicine is the only recourse and that they have options. Don’t ignore what your doctor have diagnosed and prescribed but use it as a foundation to keep exploring on how else to treat your disease, particularly when it comes to autoimmune diseases, where traditional medicine is still looking at single threaded causes.

Long ago, I was a pre-med student but I gave up that career track because I felt my then classmates were not really out to help people as much as they were looking for a lucrative career ($$$) choice. Oh sure, many also had good intentions but there were enough who weren’t to turn me off. I find it ironic now, many years removed from college, that here I am offering health advice. I am not a practitioner of functional medicine but I feel that that was what I was looking for when I though of going to medical school all those years ago.

I digress. The point I’m making is that treating a disease is not as simple as just addressing an array of symptoms and picking the right drug to treat it. Our bodies are made up of many interconnected systems and an imbalance in one can manifest itself somewhere else. Conventional medicine is often a bit nearsighted and overlooks these relationships. Functional medicine looks to treat the body as a whole and I’m pretty sure that my answer lies there.

Anyways, this is the beginning of my journey…

Winter 2015: Something’s not right but not sure what it is. First signs, from what I can recall, are muscle tremors.

Late Winter 2015 into Spring 2015: Losing weight to go with the shakes. Losing weight wasn’t such a big deal, I was looking to get rid of 30 lbs anyways. Tremors are bad though, sometimes so bad, I can’t even compose text messages on my phone. I also have this ‘hoarseness’ in my voice. I think that must be allergies as I’ve recently relocated to one of the highest pollen producing areas in the states – the south. And now, I also have this annoying acne developing on the back of my neck.

Late Spring 2015: Vacation schedule, family and other things get in the way of scheduling a visit with my primary care but now making time to have my annual physical.

1 June 2015: Finally have my physical and so my doc checks me out. I relay to him what I’ve been experiencing. He has me do a couple of tests like holding out my arms and feeling around my neck. He does see the shaking but couldn’t determine if my thyroid was enlarged. By this time, I had lost 30 lb. and my clothes were all hang off of me. Blood tests are ordered but he is guessing hyperthyroidism.

8 June 2015: I get the blood test results but as my doc is not an endocrinologist, I, of course, get referred to one. He does say that my thyroid levels are elevated (he didn’t tell me by how much) and that I have hyperthyroidism. For that visit, I am astonished to find I lost another 10 lb. Some of my friends have been asking if I’m ok – I can imagine that they are seeing me waste away but me being somewhat ignorant to my condition, think nothing of it. Despite this all, I had managed to keep functioning and didn’t lose a day of work. Ok – yes, I’m a type A, so weight loss and muscle shakes be damned!

Now that I was armed with at least some information, I begin my hunt for more information about hyperthyroidism but I still haven’t connected it with Graves’ Disease. I find enough research online to suspect and start looking for cures and was not too happy to find out about the normal way this gets treated: radioactive iodine (RAI), to fry my thyroid, or surgery, to remove it. I’m even more resolved to avoid traditional treatment and dig deeper to find out as much as I can. I’m finding more and more about thyroid disease and alternative forms of treatment, starting with herbal remedies. I pick lemon balm as my first course and start looking at obtaining bugleweed and Indian gooseberry.

18 June 2015: Endocrinologist is indicating Graves’ disease as to my hyperthyroidism. Doing more blood tests to confirm and ultrasound of thyroid. They are surprise I’m doing as well as I am considering my thyroid hormone levels are way out there (7x higher than normal). I’m prescribed methimazole @ 10 mg, taken twice a day. I’m happy with my endocrinologist as he prefers taking a cautious approach for treatment and will only look at RAI if I can’t bring this under control. Super happy that he didn’t make me do a radioactive iodine test for iodine uptake by my thyroid and opting to scan me to find my thyroid gland to be moderately enlarged instead. Still, my options with him are surgery or fry my thyroid and I’m not ready to give up.

By this time, I’ve also sourced the bugleweed and Indian gooseberry powder and have added that to my regimen. My protocol was to follow my doctor’s perscription plus take my combination of supplements: lemon balm (500 mg) three times a day, bugleweed (900 mg) once a day, although the recommended dose is twice a day, and Indian gooseberry powder (1 tsp), brewed with hot water and honey (Indian gooseberry is otherwise very tart).

I find out that Graves’ can have some really serious symptoms (heart palpitations and vision problems). Having the palpitations can be really bad as, long term, that can have damaging effects to your heart. I feel exceptionally fortunate that this hasn’t happened with me.

26 June 2015: So got the call from the endocrinologist and they are confirming I have Graves’ Disease. On the positive side, been on lemon balm for 2 weeks, which helped me recover 5 lbs (stabilizing between 160-165 lb., and, ironically, where I wanted to be before getting sick) and have been on methimazole for a week, plus taking a half dose of bugleweed, and that seems to be ‘cooling’ me down and reducing my shakes, too. Keeping fingers crossed that I can send this condition into remission (there’s no known cure for Graves’ other than getting rid of the thyroid, but doing that means a lifetime on synthetic thyroid).

I’m getting lot’s of support from my friends and family as they are finding out about my condition. I’m also stunned to find out how much more common my disease is than I’m lead to believe. I remember one of my good friends and co-worker having this some 20 yrs ago and the trouble she had dealing with this. She underwent RAI and after having figured out what dose of synthetic thyroid she should be on, has done well. I knew my ‘cousin’ was having health issues recently and that was also attributed to Graves’ (btw – could the name be any worse?), and she too had RAI but is still struggling with health issues and vision trouble. I find similar testimonials across the internet and have pretty much guessed that conventional treatment for Graves’ is still a crap shoot.

2 July 2015: Went to see a naturopath ‘doctor’ and had a good visit. Some of the things I’ve been doing is the right path from her perspective. I could be doing more and will consider additional changes to move along the curve (avoiding some food types, adding others). Advice for now is to continue with the protocol I’ve come up with (apart from the pharmaceutical) for 3 months and reassess. I’ll get another opinion from a functional medicine doctor mid-month and a blood test reading from the endocrinologist at the end of the month. Weight is holding between 162-165 and the feeling of being warm and muscle tremors are way down. There were other symptoms that I didn’t connect to my illness (hoarseness, neck acne) that are also disappearing. All good! Have a happy 4th!

15 July 2015: One month into my formal diagnosis of Graves’ Disease and I have to say I’m doing pretty well with my protocol. Weight is back up to 170 lbs now and have started to workout again. Visited with a functional medicine doctor today and they pretty much agree that I’m taking the right actions, too. Both the naturopath and the functional doctor think that I should do a micronutrient test so will review further once I have my follow-up blood test and visit with the endocrinologist at the end of the month. Gluten also came up in discussion but will put that aside for now as I don’t want to change my protocol or have too many variables to evaluate for next steps.I have eliminated fluoride from my toothpaste and mouthwash (fluoride interferes with iodine uptake) and will be consulting with a mercury free dentist to see about my potentially leeching fillings (another suspect for autoimmune diseases) and having those removed/replaced. In my opinion, I feel I’m on my way to Kong-quering this and sending it into remission.

— feeling pumped.

24 July 2015: One week before my follow-up with my endocrinologist. I’m continuing to feel good. I’m working out enough that I begin to see my muscle strength returning, and much to my chagrin, adding on more of the weight I’ve lost (edging closer to 175). I have to think that some of this is probably attributed to my reversing my hyperthyroidism and perhaps trending towards being hypo because I’m still on prescription methimazole and one of the supplements I’m taking both target slowing my thyroid gland down from producing too much thyroid hormone. I know that something is working as my voice is no longer strangled (the hoarseness), my shakiness all but gone, and the acne is getting better. While I would prefer to stay my course until I get my next blood test, I don’t want to risk causing my body to swing from one extreme to the other. I will stop taking both the bugleweed and lemon balm beginning tomorrow. I will continue with the Indian gooseberry as that is a superfood and I want to keep supporting my immune system. I am very optimistic that I can control this.

I’ve also dived into a lot of material and am slowly coming around to the fact that I will have to do at least one more lifestyle change to address the likely root cause for my autoimmune disease – Gluten. Yeah, this one has me bugged because I love my carbs! I used to be a hobbyist baker and I can’t imagine going without grain baked goods but I think I have to do this if I want to be free of Graves’. More to follow!

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