So you’ve been diagnosed with an autoimmune thyroid disease, what next? Can you still take my supplements? When I was diagnosed with Graves Disease, my life was flipped upside down. There are plenty of treatment decisions to make, but there are immediate consideration as well. In fact, I had to evaluate all the supplements I was taking. Anything that was considered goitrogenic had to go because it could cause a thyroid storm. Moreover, I had to make decisions on how to mitigate the symptoms before treatment.
Here are the supplements I’m using to cope with my autoimmune disorder (as a major caveat everything I take has been played by my endo:)
1. Selenium – this mineral is essential for normal thyroid function and is beneficial for hyper/hypothyroid patients.
2. L-Carnitine – before I was given beta blockers, I used L-Carnitine to mitigate the hyper thyroid symptoms. Once I was post-RAI, I stopped taking this supplement.
3. CoQ10 – I was taking this before I got diagnosed and was advised to continue. Apparently, patients with Graves’ disease have lower amounts of CoQ10 in their blood.
4. Zinc – I just added this to my regimen after meeting with the registered dietician at my Endo’s office. There is evidence to support that zinc supplementation helps support thyroid function.
5. Collagen – I’m loving Vital Proteins Collagen Powder. It ‘a flavorless, can be mixed into coffee, is only 70 calories and has 17 grams of protein. As for why I’m taking this, it’s really about my vanity. I’m trying to keep my hair, skin and nails as healthy as possible. Thyroid disease and thyroid hormone supplementation can lead to hair loss. I am not about that life.
6. Biotin – see the explanation above.
7. Essential oils – no I don’t think they are a cure all, but lavender has helps calm me down if I’m Graves’ raging. Peppermint and Eucalyptus are critical in relieving congestion . Since my blood pressure is not always normal, I avoid taking decongestants.
I used to take a multivitamin and myriad of other supplements, but had to stop them once diagnosed. There are a lot of supplements that interact with the thyroid or thyroid medication, so you have to be careful. I have a lot of friends that have great results with Thrive and other supplements. The temptation to try those supplements is real, however, until my doc gives me the all clear, nothing in my small regimen will change. What’s next: adjusting my exercise routine.
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Handling thyroid disease is the title I settled on after ruminating on coping and dealing. Both coping and dealing felt too passive to me, so I opted for handling. What does handling thyroid disease even mean? It means learning to thrive in spite of the misfiring or non-existence of that bitch is a gland.
When I was first diagnosed with Graves, I did what most people do and consulted Dr. Google. The medical part didn’t bother me too much. No, what bothered me is how those coping with the disease were failing to thrive or continue a productive existence. I was resolute that I would not follow that path.
Of course, in the beginning it was easy to think that way. It became hard as my heart rate soared and the RAI (radioactive iodine) was slow to work. Nevertheless, the fun and my weight were doubled when my thyroid failed. It literally happened over night. For the next several months and even still, I would migrate between hyper and hypo from day to day. It was beyond frustrating.
Thankfully, I have a wonderful Endo and have high confidence in her. Slowly, she has returned me to my normal life. I’ve run three 5ks since diagnosis, restarted my yoga practice and started the BBG workout. Nevertheless, it has taken a lot of work to get back to this place. I’ve read a lot about auto immune disease, worked with my endo and her in house R.D. and changed my workouts. I even feel back to my old gregarious self.
Now that my thyroid levels have stabilized, it will take 1-3 years for the symptoms of Graves to abate. My antibodies still show positive for both Graves disease and Hashimotos. My next task is get rid of those. In the meantime, I continue to research ways to reduce inflammation and improve my health. Each Thursday, I’ll be sharing my autoimmune experience with you. Next week, I’ll be sharing a list of the top 10 items that have helped me through my personal journey.
P.S. the title photo is from my first post diagnosis/treatment 5k.
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Last Thursday was the annual Mercedes Benz Corporate Run in Fort Lauderdale. I was excited to participate for my third running. This year was a bit different though since I haven’t run a 5k in over a year. Unfortunately, after tearing a tendon and a subsequent diagnosis of Graves’ disease, I was sidelined for what feels like forever!
Thankfully, my doctor was able to clear me for exercise once my thyroid finally stopped functioning in February. Yay! Nonetheless, a 5k was a tall order. I trained as much as I could, but with a hypoactive thyroid my energy is nonexistent. Meaning, instead of a normal, rigorous training schedule, my body needed 2-3 day breaks in between workouts. This itself represented a massive departure from my grandiose expectations for my recovery.
I was back at my doctor’s office early last week for my six-week check-in. She made some adjustments to my medication, which should help immensely. Honestly, the effortless weight gain, the absolutely no energy, the absolute exhaustion and the absolute inability to sleep properly have gotten old. On a positive note, my blood work supports my symptoms, which in my doc’s words “means we can fix it!” My doc is a rock star and is taking good care of me through out my treatment. Unfortunately, it’s just part of the process as we figure out the right Synthroid dosing.
She did reiterate my ability to work out, but added a caveat about common sense. Clearly, she doesn’t know me. I did ask about the 5k, to which she responded “I hope you lose – meaning I hope you walk.” As I got up to leave, we compromised on a solid effort in the first mile with common sense dictating mile two and three.
In the end, I was nervous and excited for my first 5K in over a year. I went into the race with reasonable expectations and the hope that I’d finish somewhat respectably. As the race neared, we entered the start corral, which was huge. The corporate run had over 9,000 participants this race. Fortunately, it was a chip to chip race. Consequently, my time was not negatively impacted by being encumbered by mobs of people behind the start line.
It felt amazing to be racing again! The first mile went pretty smooth and I felt pretty good. As I promised my doctor, I was conservative over the remainder of my race. In the end, with my foot asleep and pride swelling in my heart, I crossed the finish line. While my heart was swelling with pride, my right foot was coming back to life, after falling asleep on mile 2, as I waited patiently for my post race free beer.
My time this race was the slowest I’ve ever logged at a 5k, but it will forever be the one that gives me the most pride. After a torn tendon, a diagnosis of Graves’ disease, subsequent treatment and no exercise for nine months, my time of 37:23 is pretty damn good! Moral of the story, winning isn’t always about getting a PR every race. Sometimes winning is not being afraid to show up and do your best no matter what cards you’ve been dealt.
Lastly, I had to share this photo from last year’s race as it included Paul. My associate director Paul was someone who embodied perseverance. While he wasn’t with us this year physically, he was definitely therein spirit. We miss you Paul!
Ding dog the witch is dead, which old witch my thyroid bitch. (Sorry mom, I couldn’t resist the rhyme.). That’s right peeps after months of hyperthyroid hell, radioactive iodine and all the fun Graves could serve me, it’s done. I’ve been waiting for this day since last summer when my hyperthyroidism was discovered. For months, particularly the last two, I’ve felt like my mind and body were on a run away train. In fact, for much of December and most of January, I ran a fever and was far too often tachycardic. I even had to miss some of Goalielocks’ games because it would be too much of a load for my heart. (My doc was proud of me for actually recognizing the risk and avoiding it.)
Throughout my hyperthyroidism, I have been unable to workout. As someone who was teaching Zumba, running and practicing yoga all the time, the lifestyle change was unbearable. I look forward most to resuming my active lifestyle. I’ll be easing back into it, so as to not hurt myself or imperil my tendon’s healing. I’ve found that since my thyroid flipped from hyper to hypo that my joints and muscles are quite achy and sore. My doc assured me that the pain will go away as my thyroid balances out on the medication.
When my doctor told me this morning that my thyroid had finally flipped and the radiation worked, I could have kissed her. A fact, I was not shy in sharing with her. When she cleared me for activity, I was even happier. I think I left their office skipping with an ear to ear grin. I started the synthetic thyroid hormones today and with it another chapter in the fight against Graves. My doc has laid out a clear and concise treatment plan, which won’t be without bumps, but in the end will get me back to normal. I’m happy knowing that I’m on the road to normalcy with the worst behind me.
Naturally, when I got home from work I ate my dinner, let it rest and got on the treadmill. I promised myself that I’d start slow and I did. I put on my AirPods and ran. The first mile was not easy. My knees were quite stiff and unforgiving, but they to settled in as time went on. It felt absolutely liberating to jog/run again. I warmed up for three minutes then ran for ten, walked for two, ran for ten and then cooled down. When it was all said and done, I had run two miles. The last mile kicked my arse, but it felt so good to be back at it. I complimented my run with a 25 minute yoga session focusing on stretching the legs.
It’s Thursday eve, or hump day as we affectionately call it in corporate America. There’s something magical about the promise of a Wednesday. We’re oh so close to magical Friday afternoon. In our house, Wednesdays are also the only weekday where we can enjoy dinner as a family. It’s a nice rarity. Fortunately for me, the hubby usually has dinner done or in progress by the time I get home. It’s such a relief to not have to cook.
I was reminded tonight of the importance of being exceptionally specific when giving teenage boys directives. Sunday I had asked Goalielocks to bring down all his dirty clothes and towels, so he have clean clothes when school started. There was one crucial mistake in that sentence: the phrase “when school started.” Apparently, this freed the way for him to only wash the clothes he needs for this week.
When going upstairs to find my mouse, I noticed the error of my ways. His room still look like a clothes/bath towel box had exploded. Clearly, he hasn’t watched Tidying UP on Netflix. Or perhaps he misunderstood the directions to put all the clothes on your bed before figuring out what he could part with, but somehow I don’t think that’s the case. See when raising teenage boys, you have to be exceedingly specific and definitive in your directives. Moreover, you have to follow it up with turning off the wifi until the chore is done.
To be fair, both Goalielocks and his older brother Jake do their own laundry, so I can’t complain too loudly about his laundry. It’s just when Goalielocks does laundry, he only does 10%. Marie Kondo would lose her mind! Now for the good news. With the youngest in seventh grade, I’m a year away from only have to do me and my hubby’s laundry. That will be an awesome day!
An update to the thyroid, I’m still hyperactive and there’s inflammation in the gland. This is part of the process of they thyroid dying, but it’s taking forever and I’m impatient. Due to the thyroid, I’ve been running hot (low-grade fever) for the past several weeks. My heart rate has come down a bit since last week, which is a relief. It had a mind of its own last week, so I skipped the trip to Tampa with Goalielocks. After all if my heart rate Friday was 105 bps sitting at my desk while on beta blockers, my heart rate watching my goalie would have been dangerous. Good times!
While I wait for the hyperthyroidism to abate, I’m taking it completely easy. At this point, I’m not even non-aggressively riding my bike. We’ve had a cold in the house, so I’ve been taking fresh ginger shots with lemon to boost my immune system and reduce inflammation. It’s amazing how sweet a lemon tastes after drinking ginger. If you haven’t tried it, I do recommend it. For my S. Florida peeps, I recommend checking out Juiceberry in Boynton in Deerfield Beach or Smoothie Whirl’d in Boynton and West Palm. A solid online option is Jus by Julie’s boosters. When bundled with a cleanse, they’re 30% off through Sunday with the discount code Cleanse30. Since we’ll be traveling a bit in the coming weeks, it will be easier for me to have them delivered.
No sooner had I left the office Monday night, then it was New Years day and back to work. Like right back to work. It felt more like an abbreviated weekend than a holiday, but we made the best of it. New Years Eve we headed to my brothers for snacks, games and of course champagne. We even snuck in some shots of Salmiakki. My mom made some pickle rolls ups, aka Minnesota Sushi, which brought back some great memories of the holidays of my youth. I haven’t had them since we moved south of the Mason Dixon thirteen years ago! We rushed home after midnight, so as to try to beat the traffic.
The next morning we were going to head down to Fort Lauderdale for brunch, but that ended up being moved to Boca. This made is a lot easier for us although I love Fort Lauderdale. My sister-in-law Brandi and her cooking partner Phil made yet again an amazing meal. They always partner up on Thanksgiving to make a fantastic dinner, so getting to enjoy twice this year was quite nice. Fortunately, I didn’t include anything about food in my New Year’s resolutions or I would have broken all of them at brunch!
After brunch, we headed out to South County Park in Boca to go jet skiing. There is a nice lake behind the amphitheater that is deceivingly large. There’s not a ton of room by the docks, which keeps it from getting too crowded. Fortunately, the weather was absolutely sublime lows 80s and some cloud cover to keep it cool.
Our younger two, Goalielocks and the Mayor, were hooked after their first rides. Once they got on, they didn’t want to get off the jet skis. Eventually, they had to get off so other people could ride, but they were keen to get back on the water. Fortunately, both Grandma and Grandpa got a chance to ride the jet skis. Both of the boys got to drive the jet skis, which they absolutely loved. Goalielocks is a little more sensible, while the Mayor’s driving style can only be described as “balls to the wall.” I can already sense how much fun we’re going to have teaching him to drive.
After several hours of jet skis and Cornhole, we headed home to get ready for our inevitable return to work on Wednesday. Shortly thereafter, the Mayor convinced my husband to make Caribbean jerk chicken with black beans and rice. The kid ate two full plates. Unquestionably, he has a hollow leg – or so we thought.
He left dinner to take a shower having been on the lake all day. After about fifteen minutes, he came back out to the family room and announced “I threw up all over the bathroom and I missed both the sink and the toilet.” Now that my friends takes talent. Immediately, the hubby and I got up to check him out. He insisted he was fine having thrown up only because he ate too much too fast with too much milk.
After making sure he was fine, we headed to the bathroom. His assessment was spot on. He had in fact thrown up all over our bathroom effectively missing both the toilet and the sink. I’m not quite sure what happened, but I was relieved he missed the rugs and the dirty clothes he left strewn about the floor. Thankfully, he was okay and not harboring some insidious stomach bug. Since I wasn’t feeling well, he cleaned up the projectile mess. He’s the real hero!
And just like that in the blink of an eye, we went to bed and got up for work like nothing had changed……. Our Tuesday holiday was quickly over and it was back to reality.
There’s no dignity in aging that is for damn sure. Along with radiation, isolation this pretty much describes the last couple months of my life. You may recall that I tore my tendon last summer while running. It was a complete buzz kill and put me on a boot and scooter for ten weeks. The injury, a tear in the posterior tibial tendon, was a surgical injury. Unfortunately, in my pre-op blood work they found that my thyroid had gone rogue. I went back two weeks later to ensure it wasn’t an anomaly and sadly it was not.
Now I was sidelined with a torn tendon and a rogue thyroid. I guess they weren’t lying when they said there’s no dignity in aging. Since my thyroid was hyperactive, I was no longer a candidate for surgery, so I opted for the controversial and expensive stem cells injection. Further complicating matters it the fact that our tendons ability to heal is heavily influence by the thyroid. Thus its unlikely that I’ll see a full recovery in the tendon until my thyroid has stabilized. #winning Nonetheless, between the torn tendon and the hyperthyroidism, I’ve been unable to do cardio since late July. It’s been quite the adjustment both mentally and physically.
My visit to the the endo was pretty straightforward. We were both confident that was the culprit behind my hyperthyroidism given that Graves Disease runs in my family. She did stress that I was lucky to have found the disease early as it progresses quite rapidly. Moreover, she laid out a plan of action to confirm our suspicions: more blood work and a thyroid scan and uptake test. If the diagnosis was confirmed, we proceed immediately to RAI (a.k.a. radioactive iodine) treatment. The nice thing about my endo is that she does’t make me come in to get test results or discuss next steps. Naturally, I have my appointments, but it’s nice not having to go into the office each step of the way.
Once my blood work came back abnormal the second time, my GP referred me out to an endocrinologist. Apparently, in South Florida they’re in very high demand. I initially made my appointment in early August for late October. I was none to pleased with that timeline. Fortunately, an appointment opened up in early September.
In late October, after more blood work and thyroid scan/uptake test, she called to confirmed that our initial suspicions were correct. It was Graves Disease, an autoimmune disorder that attacks the thyroid gland causing it to be hyperactive. My next step would be the RAI treatment. Fortunately, I was still able to go overseas and enjoy all that Sweden, Finland and Denmark have to offer before completing the RAI treatment. Admittedly, I was far from 100% during the trip, but I still had the most amazing time. (I’ll be sharing more from the trip in the coming days.)
Once I was back on the continent, the appointment was set and my family I prepared for the three days I’d spend in complete isolation. (Fellow moms, I know what you’re thinking – complete silence and alone time= complete gift. You’re not wrong.) This was also the run up to the Purple Stride event and I was serving as Chair for team and personal development for the first time. We had to buy a lot of disposable plates and silverware, since my dishes couldn’t co-mingle with the family’s dishes. I also bought a lot of cough drops and throat spray as throat pain is one of side effects of the treatment.
Early November 19th, I headed over to DCA where they’d administer the RA-131. By this time, I was anxious to get it over with and get back to normal. They called me back and then there was a problem. When they called to schedule, they neglected to tell me that a negative pregnancy test had to be on file. At this point, I was quite aggravated and not willing to move my appointment. It was, after all, their mistake.
Fortunately, I was able to negotiate a compromise with the tech and radiologist. I quickly left DCA and headed to CVS where I bought the cheapest pregnancy test I could find. I hurried back to DCA, took the test, handed it to the tech and got my RAI. Sadly, I forgot to take a picture of the mini-keg the pill came in. I did have some trepidations as the tech handled the keg with thick lead gloves as she pulled the pill out of a thick glass test tube from within the keg.
The following days were quite uneventful. I worked from home effectively only missing conference calls since my throat hurt and my voice was weak. I binged watch all of the shows and movies I can’t ordinarily enjoy in a house of boys. To be honest, I was a bit disappointed that my neck didn’t glow. I had grandiose plans of making a video of me singing radioactive with a glowing neck, but alas that couldn’t happen. Since the boys were off that week, they took times dropping off water and food to my room. By the end of the three days, I was ready to see civilization again.
As I mentioned, the boys were all home from school that week. You would think that while I was in insolation things like the dishes, sweeping, and putting away clothes would have been taken care of, but alas they were not. No sooner had I left my isolation than I was already willing to go back into it.
It’s been almost six weeks since the RAI and my thyroid should be slowing down by now. However, my thyroid, as mentioned before has gone rogue. It is now more hyperactive than it was before. Needless to say, I’m quite disappointed. I cannot go back to working out until my thyroid is no longer hyperactive. So say a prayer that when I go back to my Endo in six weeks, my rogue thyroid has been reformed and on it’s way to being normal or hypo.
In the meantime, I’ll continue taking the beta blockers and trying to adhere to a sedentary lifestyle that’s miserable. The disease has made watching Goalielocks in net a bit perilous. Fortunately, the beta blockers keep my heart rate and rhythm from being totally ridiculous. Thankfully, the Mayor is a second year peewee and not in a checking league, so his games are still pretty relaxing for me. (You know I had to bring some hockey into it!). I’m utterly exhausted day in and day out, which is a major downside of the disease and the meds I’m on. Sleep is hard to come by when your thyroid is hyperactive. The beta blockers make it even more difficult. One thing is sure, when this is over and it will be soon, I’ll be quite grateful for good health and the ability to be active. I cannot wait to run again!