20 Years of Living With Autoimmune Disease – Part III

Autoimmune Part III  – They Killed My Thyroid Before It Killed Me

Before sharing more of my story, I want to thank everyone who sent private messages during and after my Facebook Live on Thursday after I met with my doctor for a follow-up. This 3-part series might be able to be turned into a book! (Part I is here, Part II click here). But, let’s get back to the story. Last week I left off with accidentally taking one of my dogs’ thyroid pills as they were in an old Ibuprofen bottle without any markings of what the contents actually were! (DO NOT DO THIS!!!). By the next morning, I completely forgot about taking the pills and went along with my life…

After getting back to our hotel, I totally forgot about the incident and went about doing what had to be done. Rest, take care of sled dogs travelling in a dog truck, etc. Mark and I decided to stay in Michigan for the banquet and had a little time to relax and catch up on lost sleep. The Holiday Inn we stayed at had a nice pool, hot tub and sauna and on Sunday afternoon I decided to head for the sauna. When I put my swimsuit on, I remember feeling a little bloated. If you recall from Part I, I was extremely thin and most of my clothes were falling off me, so having my swimsuit a little snug was strange. I shrugged off the puffiness to dry hotel air and being super –tired from only getting an hour of sleep from a night on the trail (again, I ignored ANOTHER sign of my body telling me something was wrong).  Monday afternoon found us heading back to Minnesota, and I had taken the following day off to unpack the truck and catch up on a little more sleep before heading to work.

Who knew thyroid disease could lead to a trip to the ER?

Who knew thyroid disease could lead to a trip to the ER?

On Tuesday night I went with Mark to a Beargrease board meeting (he was the marathon musher representative). It was a pretty long meeting so we didn’t get home until after 10:00 pm. While getting ready for bed, I had a really hard time getting my jeans off, which again was really strange as at that time I needed a belt to keep my size 3 Levis from falling down! Once I finally tugged them off and looked down at my calves and thought my lower legs looked swollen. Mark came up a few minutes later and I asked him if he thought so, and his comment “holy shit, yeah!, said it all  We were concerned I was having something happen as a result of the little accident I had at the Escanaba checkpoint the Saturday before. As mentioned before, I was smoking a pack a day and was on birth control pills. The combination can be dangerous and my doctor warned me blood clots are a serious side effect of the combo. Also, the year before, Mark ran the Iditarod and one of the mushers he was running with had a crash early in the race and a week later she was medevac’d out of a checkpoint due to…severely swollen legs! My crash wasn’t as bad as hers, but after a little deliberation, I called the hospital to see if I should be concerned and was pleasantly surprised my doctor was on call. When he called back and I explained my accident and swollen legs. He told me I could either come in to the office first thing in the morning or go to the ER. His last words of our conversation, “you seem a little concerned and since you have good insurance, you might want to go to the ER to put your mind at ease”, might have saved my life. On Tuesday, February 18th, 1997 at 11:45 pm, Mark and I arrived at the emergency room and checked in.

Through The Roof Blood Pressure and a Resting Heart Rate That Was NOT Resting!

Vital signs for thyroid disease

Heart monitor measuring vital signs. While this is a stock photo, the BPM is similar to my RESTING heart rate at the ER!

After getting checked in, the triage nurse took my vitals and was alarmed with the reading of my usually normal blood pressure. I don’t recall what the numbers were, but it was dangerously high. When she took my resting heart rate, she looked at me and asked me “do you feel OK?” I told her other than my swollen legs I thought so. She was floored as my RESTING heart rate was 150 bpm. While normally ER waits can be epic-long, she rushed me into a room and within minutes of changing into a gown, a doctor came in. He examined me and had a look of concern on his face after reviewing my chart. Mark and I recalled the story of my crash and being on birth control and he sent me for a Doppler scan of my legs looking for blood clots. The test came back negative so next he ordered a CT scan and chest X-Ray to see if they could find anything causing my symptoms. Both tests came back negative too even though my vitals were on the rise. He asked what seemed like hundreds of questions trying to figure out what was causing my symptoms and I answered no to all of them.

Swollen lower legs congestive heart failure.

A CT Scan was just one of the many tests done on me trying to figure out why my lower legs were swollen.

Throwing Fuel On an Already Raging 5 Alarm Fire

The young doc left the room to consult with a more experienced doctor. In his absence I remembered taking Isaac’s pills and said to Mark, “hmmm, I wonder if that could have anything to do with this?”.  When the doctor came back in the room, I told him the story and he asked what the pills were for. When I told him they were for a dog with an under-active thyroid,  I saw a light bulb go off in his head. He asked me for the name of the medication, dosage and how many I consumed. Five minutes later he was back in the room rushing me to have an electrocardiogram. The nurses were doing their best to put Mark and I at ease, but the look on Mark’s face was anything but ease. They hurriedly hooked me up to the machine and listening to them talk in medical lingo, I couldn’t quite grasp what they were saying. Add to the fact it was now 5:00 am, I felt like I was in a movie with it all in a cloudy blur. As soon as the test was done, the doctor came over with the news, I was going into congestive heart failure. Mark and I looked at each other with shock, but were put a little at ease when the doctor said it was early and they could stop it with medication since it was medicinally created…well kind of. You see, those little pills increased my metabolism, which increased my heart rate, spiked my blood pressure and my poor heart couldn’t keep up. Keep in mind, I also didn’t know at the time I had an extremely hyper-active thyroid that was doing the same thing to my body (the night sweats, hand tremors, etc. were signs). When I took those pills five days before, it was as if I put threw a gas can on a raging fire!

Graves/Autoimmune disease is like a raging fire within the body.

The mistake of taking the dog pills thinking they were ibuprofen was like throwing gas on a raging inferno!

A Possible Diagnosis of Graves’ Disease

After stopping my heart from going into congestive heart failure, I was wheeled to the Coronary Intensive Care Unit, I was quite the site: I was hooked up to a high tech heart monitor, a machine to read my blood pressure and heart rate continuously and the nasal oxygen mask hooked up in the ER, was still in place. If only we had smart phones back then; I had more wires attached to my body than an electrical substation! While my vitals had stabilized, they were still extremely high. An hour or so later my doctor came in on rounds. He made some comment about this wasn’t how he planned on seeing me this morning, but was glad I had made the choice to go to the ER. It turns out, had I decided to go shrug off the swollen legs and go to sleep, there was a chance I may not have woken up or if I my heart stopped  at home, living 25 miles from the hospital in a volunteer area, I may not have gotten the help I needed in time.

Flatline

This is where I was headed had I not had my Graves’ Disease treated!

My doctor, who was quite the character, came in with some sort of joke before getting into doctor mode. His first comment was “you’re awful thin” and Mark and I agreed I was the thinnest I’d ever been in the winter. He followed up with a battery of questions “have you been having a racing heart (yes), do you have hand tremors/shaky hands (yes), night sweats (yes)”. He asked a couple more questions before his final question directed at Mark with a disclaimer “be careful how you answer this Mark…has she been bitchy lately?” (and of course he answered YES!).  After a brief exam with a final look at my eyes, he said he suspected I had been suffering with Grave’s Disease  for months. He went on to explain it’s where the thyroid gland starts pumping out incredible amounts of hormone (here’s a link to a great article). All those signs I ignored all winter were classic signs and as mentioned earlier, I sped up the process even more by accidentally taking the dog pills. He went on to explain had I not received treatment, at some point my heart would have stopped beating from the beating my body was taking internally.

They Killed My Thyroid Before It Killed Me

After getting my vitals under control, I was sent home with a couple of prescriptions to keep my heart and other hormones from going crazy again while the dog medication worked itself out of my body. A few weeks later my “clean” body was tested for thyroid function for the first time. The result? I had an extremely dangerously overactive thyroid. A few days later I was back in the hospital taking two radioactive iodine horse pills to kill my thyroid, before it killed me. The nurse who administered the pills was a customer of mine at the restaurant and said my thyroid number was one of the worst he had seen in his 10 years in the department. (A little digression: four years earlier when I ruptured a disc in my lower back, an orthopedic nurse told me the same thing about the results of lower back MRI).

And So Began My 20 Year (and Counting) Journey of Thyroid/Autoimmune Disease

A couple days after my thyroid was killed, I was started on my first dose of thyroid medicine. My doctor started me on a low dose and adjusted my meds monthly for the first six months until it appeared my body was functioning at a new normal. During those six months I went from a thyroid having my metabolism racing at dangerous levels making me extremely thin to the opposite. In the first two months after my thyroid was killed, my weight not only was back at it’s usual 130 lbs, but it added another 20 lbs! It was incredibly hard on me emotionally as well as physically; none of my clothes fit, even my “fat clothes”. Thankfully a few months later my body found it’s equilibrium and for the next 10-12 years, my weight swung only a few pounds in the range of 135-140. I did feel a little better but remained tired all the time. Before Graves’ Disease, I loved being active and the life of the party. After my thyroid was killed I went to feeling like a zombie and a party pooper. I put on a good face for many years, living our active sled dog lifestyle, all while struggling to get through every day. I thought this was my “new normal” I was the cross I would have to bear for the rest of my life, and sucked it up.

From Then To Now

Iron infusion

My “Popeye” food…iron in a bag!

With that, I’ll finish the story and fast forward to now. In my Benefits of Celery Juicing 2-part series I wrote this spring (click here for Part 1, and here for Part II), I shared most of the story from the end of this story to today. However, this is a story that will continue to be written. I’ll be sharing my journey doing my damndest to get back to optimal health as it goes along. I’m currently in the middle of receiving four iron infusions as my iron level was almost non-existent last month. The number that should read in the mid-200’s was a 3! At my first infusion the nurse inserting my IV said she’s seen low iron levels before, but mine was the worst she’s seen in her 20 years in the department (the third time I was told that by a nurse, lol).  Two days after two infusions, my number is up to 41. My doctor said it should continue to rise my body breathes a huge sigh of relief to have it back, and expects it to reach it’s “normal” level within three months after my last infusion. Her hope is I won’t need any more after my fourth.

An hour long iron infusion

I shared this image on my InstaStories at my last iron infusion. When I’m all done with them, Popeye won’t have anything on me! (hopefully).

At this time we are still trying to find why my iron level crashed in the first place. So far a colonoscopy and upper GI haven’t found any internal bleeding, but my sluggish digestive symptom (another effect of a low functioning metabolism) didn’t get rid of all the contents in my upper colon (EVERYTHING was gone from my lower, lol). There was too much of a fiber ball (that’s what I get for eating such a healthy diet, ha!) for the doctor to see the last area, where sometimes cancer and other problems can hide. At this time, we aren’t worried, but after a month or so, I will have to go back for with a longer prep to guarantee nothing is hiding anywhere in my body. (Oh boy).

In the meantime, feel free to find me on my personal Facebook page as well as our Aging Youthful page, where I am sharing my story as it happens with Facebook Live updates after doctor visits as well as daily inspiration, easy healthy recipes, motivation and more. I’m currently in “gym jail” as working out right now could be dangerous for me. My organs have been so deprived of oxygen for at least 3 years (iron is the carrier of oxygen through our bloodsteam) there could have been some damage done to my heart. As I always do, I am keeping positive thoughts and am trusting in my body and it’s ability to heal itself when it receives the nutrients it needs (iron is a nutrient!).  I shared a little about this in this FB Live last Thursday. As I urged in my video and other parts of this story, please, please, please share this with someone you love that might be silently suffering and not knowing where to turn, what to do or even that there is hope! My mission is to share my story with as many people as possible to not have anyone else go through what I have in the last 20 years. Be sure to join our community mailing list to have stories like this and more delivered to for your inbox!

We love hearing from you! Comment below or on our Facebook or Instagram pages with your story, what you’d like us to share or just say hi. See you next week where I will talk about mindset and how it is the foundation of being the best version of ourselves to live a life we love! (Hint, nothing has to change in our life to love our life, stay tuned!).

 

 

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