I don’t usually get too personal on the blog – unless you subscribe to my newsletter, there are always little tidbits about me that I mention… but I have yet to mention the ugly truth about my thyroid disease. I also don’t typically discuss health problems on the blog, (let alone my health problems) but I’ve been struggling inside with this silent illness and I know there must be others who are also struggling. I want you to know that you are not alone and I’m sharing the ugly truth about my thyroid disease for anyone else struggling with hyperthyroidism or Graves Disease. Please take comfort in listening to my story and watch for these symptoms if you or someone you know is predisposed to thyroid disease.
Disclaimer: This post is intended to educate others on my personal experience. I am not a doctor and you should consult your physician before starting any of the remedies I mention. Your results may differ from my own.
I was recently diagnosed with hyperthyroidism and my life has not been the same since.
Although it has been less than 4 months since my symptoms began, at times, it feels like an eternity where I’ve only been moving backward instead of forward. It all started when we came back from an amazing Summer vacation right before school started in the Fall. I took a break from my daily workouts and when school started I decided to take another week off. I was dedicated to daily exercise and clean eating for the past few years because it made me feel younger and also was a huge relief for my existing back problems.
After taking another week off from working out, I tried to resume my workouts but noticed I was really struggling to catch my breath during the workout. I dismissed the issue and assumed I was just out of shape since I took 3 whole weeks off from exercise. Then I noticed that I would get out of breath just from going up the stairs in our house. I also noticed I was trying to catch my breath when trying to get the kids ready for school or getting them ready for bed. I felt like I was having anxiety at the same time but I tried to ignore it and came up with excuses in my head – maybe I had a virus or maybe I was out of shape from not working out and over-indulging on our vacation.
Then the headaches started. Pounding headaches day and night. The ones in the middle of the night were the worst. I’ve never had headaches like that before and I’ve had Lyme disease and other illness that cause recurring headaches. While all this was happening I was eating the same, not working out and I was losing a lot of weight – quickly!
I lost a total of 14 pounds in a month.
Most women my age would love to lose weight quickly like that but I was scared. I was already pretty thin and since I didn’t change my diet and wasn’t working out, I knew it wasn’t natural. I told the hubby about everything and he thought I had a virus. We both were feeling a little under the weather which could explain why I was tired all the time too.
But that changed one morning that was especially hard to get the kids out the door. I remember holding onto the kitchen counter because I was so dizzy. My heart was racing. Once the kids were out the door, I showered and went to blow dry my hair. I couldn’t do it. I was too weak and couldn’t catch my breath.
I couldn’t even blow dry my hair.
I just sat on the bed and called for the hubby and told him that something was not right.
The hubby drove me to the nearest urgent care… because our health insurance sucks and I would’ve paid in full for our primary doctor (the affordable health care act is an entirely different subject that I don’t want to get into a discussion about on my blog, just putting that out there!). The doctor at urgent care thought I had a blood clot in my chest which could be causing my shortness of breath and told me to go to the emergency room.
While in the ER, the doctor ordered tests for my thyroid and a CT scan (just because some urgent care doc suggested I might have a blood clot). As I laid in the hospital bed, my heart rate was measuring around 140 beats a minute on the monitors and I was barely moving. As soon as the doctor mentioned it could be my thyroid, I Googled my symptoms and “thyroid” and looked at the hubby and said, “It’s got to be my thyroid.”
I was told an overactive thyroid was easy to treat.
When the doctor explained to me that my blood test revealed that I have hyperthyroidism, he said it was easily treatable with medication. I would make an appointment with a specialist (an endocrinologist) and they would do a few more tests and I’d be on my way with medication and be back to normal.
It wasn’t that easy.
Some people might do well with medication and some people might not. I was one of the small percent that “might not.” I was given a beta-blocker in the ER until I could get an appointment with the endo… 3 weeks later. Those 3 weeks were a huge struggle for me and the hubby. He was doing a lot more things around the house and taking care of the kids. I could tell he was overwhelmed and stressed out. The appointment with the endocrinologist couldn’t come sooner (I guess there is a lack of specialists and high demand where we live).
During my appointment, the doctor asked me a lot of questions and educated me on the thyroid. She said the best plan was to do a CT scan but since I just had one done at the ER, I must wait 6-8 weeks before having another (because of the iodine). She started me on anti-thyroid meds at a higher dose than usual since my thyroid levels were so high. She instructed me to stop the beta blocker once the prescription ran out. She also gave me orders for blood tests and the CT scan and I was on my way. I left the office feeling hopeful. I read online that many people with hyperthyroidism start feeling better after starting the medication.
Everyone is different.
A week after starting the medication, I could tell I was feeling slightly better. Two weeks after starting, I was feeling more like myself and was really excited about that. It was around that time that my prescription for the beta blocker meds ran out so I stopped taking them as the endo instructed. Then out of nowhere a few days later, I had flu-like symptoms: low-grade fever, fatigue, body aches, and pain… which continued like that for 3 days. I called my doctor who said I was most likely having a reaction to the anti-thyroid meds and instructed me to lower my dose. Two days later, the symptoms persisted, this time I could tell when I woke in the morning, I was feeling fine, but then I would take my medicine and an hour later the flu-like symptoms returned.
I knew I was having a reaction to the meds.
This was not the first time I’ve had reactions to certain medications, although I’m not allergic to medications, this was a reaction. My body was fighting the medication out of me! Except this time things were worse. Not only was I experiencing all my hyperthyroid symptoms again (because of the lower dose) but I couldn’t get out of bed from exhaustion, fever, and chills. I called my doctor again and asked if there were any other options. There are only 2 medications to treat Hyperthyroidism and I have a reaction to one of them.
My doctor instructed me to stop the medication and provided me with the only other medication used to treat hyperthyroidism. She also put me back on the beta blocker. Within days I started feeling better (except a slight reaction where I had major acne on my neck!). I’ll never know if it was the thyroid meds or going off the beta blocker that caused my issue.
Trying natural remedies
During the time when I was having the reaction, I did a lot of online research for natural methods of healing the thyroid. I learned that gluten, dairy, and sugar can cause hyperthyroid flare-ups so I cut back on gluten and completely cut dairy out of my diet. I also looked into using essential oils since I’ve had so many positive outcomes from using essential oils in the past.
I started using EndoFlex oil from Young Living and applied it directly to my thyroid using a roller ball. I tried this addition for about a week and didn’t feel like it made a difference so I started applying it to the bottom of my feet and thyroid and I think that made a difference.
The CT uptake scan
I was only on the new medication for a couple weeks when I had to go off it for one week for the uptake scan. I felt really good that week I was off the meds and contribute feeling good to the Endoflex essential oil I was using.
If you’re curious what takes place during a thyroid CT scan, I’ll lay it out for you in detail 🙂
A CT uptake scan for thyroid consists of 3 appointments in a 24 hour period. My first appointment was scheduled for 9am and I was not allowed to eat or drink anything 2 hours before and 2 hours after because I was going to take a radioactive iodine pill. The radiologist gave me the pill in a special glass container and instructed me to not touch the pill but to just toss it back in my mouth. I was allowed to drink a small bottle of water with the pill but that was it for the next 2 hours.
My second appointment was 5 hours later.
During the second appointment, they had me lay on a table in a dark room. They placed a large device (like a camera) right over my thyroid and asked me to lay as still as possible for 20 minutes. I fell asleep on the table, lol. After 20 minutes, they took the scan.
Minutes later the radiologist came in and showed me a picture of my thyroid. I had no idea what I was looking at or should be looking for. He also said my levels were 104% and that without a doubt I had Graves Disease. I had no idea what the percentage meant until meeting with my Endo the following week and here’s what she had to say: A normal thyroid will take 5-16% of the iodine and my thyroid was taking 104%.
So I left the CT scan knowing I had Graves Disease. The radiologist said there’s no reason to do a second scan (the third appointment) because my levels were so high but we did a second scan anyway the following day at 9am (24 hours after taking the radioactive iodine).
To kill my thyroid or not to kill?
I left that appointment leaning toward killing my thyroid because every single doctor that has seen my labs says it’s the worst they’ve seen or the highest of their patients. Hearing that doesn’t give me hope that I could heal my thyroid another way.
If you aren’t familiar with the process to kill a thyroid, I’ll sum it up for you. You take a radioactive iodine pill (stronger than the one I took for the scan) and over time it kills the thyroid gland so it essentially stops working and you have to be on medication for the rest of your life.
There’s a lot of dangers with having hyperthyroidism and I didn’t want to take that chance.
Then the hubby told me to watch this video from Emily Reynolds and I was scared after watching it. I didn’t want to be total opposite of what I am now and I didn’t want to experience an extreme Hypothyroidism after killing my thyroid. I’ve always been an active person and could not imagine slowing down like Emily Reynolds experienced.
I began looking for anyone else online that was living with Graves Disease and managing it by NOT killing it or surgery… and I couldn’t find anyone. If you are reading this and are living with Graves Disease (without radioactive iodine or surgery), please message me or leave a comment below. I would love to hear your story and I’m sure my readers would too 🙂
The only options available
From what I’ve researched online and talked about with my doctor, I’ve learned there are only a few options to treating hyperthyroidism:
- Anti-thyroid medications (only 2 kinds available)
- Radioactive Iodine Therapy
In my case, surgery was not recommended since I did not have nodules or anything else indicating the thyroid should be removed. I already had a reaction to 1 of the only 2 anti-thyroid medications so I truly only had 2 options.
I was determined to keep my options open so I reached out to a friend of a friend that I learned was living with hyperthyroidism by using natural remedies. Although she had never been diagnosed with Graves Disease. She had just given birth and was breastfeeding her baby when she found out she had hyperthyroidism (you cannot take radioactive iodine if you are pregnant or nursing so she never did a CT scan to confirm Graves).
She told me her story and how she started taking Young Living’s Thyromin capsules every night (help her sleep) and various other oils (Clary Sage, EndoFlex, Myrrh) and was able to ween off anti-thyroid meds altogether. She gets her levels checked every 6 months and has flare-ups every now and then if she doesn’t follow her regimen. I also told her about my acne flare up after switching meds and she suggested Beauty Serum oil (which helped a lot and made my skin glow).
I was already trying EndoFlex oil from Young Living so it wouldn’t hurt to try the other products.
I also learned how diet changes can support auto-immune disorders like Graves Disease. A few diet changes that I implemented were:
- Gluten Free
- Dairy Free
I went entirely Gluten free and dairy free and it was actually easier than you might think. I do miss my Greek yogurt, pizza, and Naan bread) but otherwise didn’t have to give up too many foods because I already ate very healthy.
Trying natural methods with anti-thyroid meds
After my CT scan, I met with my endocrinologist to decide the next steps. I asked her if I were her daughter what would she suggest and she said she would tell her daughter to have the radioactive iodine therapy done. I asked if I could try some natural methods as well as continue her suggested medications. She mentioned that with my high levels there may be increased doses in the future. My next lab was scheduled in 3 weeks and she would let me know how things look then.
I had labs scheduled every month for the next 12 months with a follow up with the endo in 3 months.
I started taking Thyromin capsules (from Young Living) every night which helped me sleep so much better! If you’re not familiar with some of the symptoms of Graves Disease, insomnia is one of them, because your heart rate is increased and it’s basically like you’re running a marathon while laying in bed!
I also made my own roller ball of essential oils (Myrrh, EndoFlex, Clary Sage, Frankincense, and Lemongrass) which I applied 3 times a day to my thyroid and the bottom of my feet.
I was very anxious when it came time for my next lab test. I was hopeful that all these extra measures (diet changes, etc) were making a difference and nervous that they weren’t.
My labs came back that my thyroid was functioning A LOT better but still not 100% normal. My doctor decided not to increase my meds though because my liver enzymes were borderline. My instructions were to continue the current dose and have labs in the next couple months as planned.
I was freaking out about my liver and started looking for natural remedies for liver function. So far I’ve started taking Celery Seed oil in a capsule (3x day), Vitamin E capsules (1x day), and Liver Gardian (2-3x day) which are all made from plants and all-natural ingredients. I have to stay away from alcohol completely. It’s frustrating that my thyroid has improved but my liver is being damaged… which makes me wonder if I should kill my thyroid and just get it over with. I can live without my thyroid (if using thyroid meds) but not my liver.
Can you see where having hyperthyroidism is a never-ending cycle of health problems?
So this is where my current health stands. I was able to start working out 3-4 times a week, but only weight training, no cardio. I’ve gained 5 lbs, which I attribute to muscle weight but gaining weight is still better than losing weight in my case.
I’m really focused on being the healthiest I can be to beat this disease, even if I do end up killing my thyroid. I’m a firm believer that we are what we put in our bodies: food, stress, alcohol, exercise, water… it can make us or break us.
I plan to update this post or follow up in another post with any major steps I take. If you are suffering from thyroid disease or interested in learning more about using Young Living products to support your thyroid, feel free to leave a comment or message me at Melanie@simplemadepretty.com 🙂
June 6, 2017, UPDATE:
My thyroid levels have been a roller coaster (up and down) since writing this post 6 months ago, but I have good news! My levels are finally stable! I don’t want to jinx myself by saying that since I’m scheduled for monthly labs this week, but I have yet to update this post with any news so here it is.
My endo has been slowly increasing my meds each month until last month my thyroid levels were finally normal. However, while my labs were really good, I had an increase in hyperthyroid symptoms last month. This month I’m feeling really good and I’ve continued weightlifting Monday – Friday with no concerns about over-doing it.
Although the PTU I’m taking causes severe liver damage, I’ve been taking Milk Thistle and Liver Guardian (to protect and repair my liver) and my liver levels are normal. I’ve been able to take IBProphen or have an occasional alcoholic beverage without affecting my liver!
Life is pretty normal for me at this point. It’s been 9 months since I was diagnosed with Hyperthyroidism and 6 months since diagnosed with Graves Disease. I have a follow up in-person appointment with my endo every 3 months and she still encourages me to have my thyroid killed. I’m hoping with my recent labs showing good results that I can put off having my thyroid killed for a bit longer.
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