Health Life

Living With Hashimoto’s Thyroiditis

June 13, 2022

I have wanted to blog on this subject for a while now, but have held off for the longest time.  I was hoping to write about it once I had a better understanding and more control on the management of this chronic autoimmune disease called Hashimoto’s thyroiditis.  However, the honest truth is that there are still a lot of unknowns when it comes to Hashimoto’s and a lot of trial and error when it comes to managing the symptoms.

As mentioned above, Hashimoto’s thyroiditis is an autoimmune disease.  An autoimmune disease is when the immune system mistakenly attacks itself thinking that it is in fact protecting the body from foreign invaders such as germs, bacteria, and viruses by doing so.  In the process, healthy cells are destroyed causing a chronic inflammatory condition because the body cannot distinguish the difference between your own cells versus foreign invaders.  Doctors to this day do not have a good understanding as to why this happens.  However, it is believed that autoimmune diseases are more common in certain ethnic groups, in women, and certain genetic components can make one more susceptible to developing an autoimmune disease.  Examples of other autoimmune diseases include rheumatoid arthritis, lupus, inflammatory bowel disease, multiple sclerosis, type 1 diabetes mellitus, Guillain-Barre syndrome, Graves’ disease, psoriasis, myasthenia gravis, celiac, and so much more.  There is no cure when it comes to autoimmune diseases, but treatments are aimed at managing the body’s inflammatory response, and decreasing the symptoms that are caused by the autoimmune disease.

For those who don’t know, the thyroid gland releases hormones that control metabolism, and regulate body functions such as breathing, heart rate, body weight, muscle strength, menstrual cycle, digestive function, brain development, mood, bone maintenance, body temperature, cholesterol levels, and the central & peripheral nervous systems.  I was diagnosed with having a thyroid that was not releasing the normal amount of hormone (hypothyroidism) in the fall of 2015 after getting labs drawn to figure out why I was feeling chronically exhausted 24/7.  I work 12-hour night shifts (from 1845-0715) so I figured feeling extremely tired is kind of expected since my circadian rhythm has been thrown completely off.  I thought on my days off from work, I could get my circadian rhythm back to normal and everything would bounce right back.  Nope, that never happened.  Sleeping 10-15 hours a day slowly became my new normal and I would wake up not feeling refreshed or awake.  In fact, I felt like I could use a little more sleep.  When I was awake, I always felt like I just got hit by a train.  I felt sluggish and had terrible brain fog.  It was difficult to focus on anything and I could tell that my mental acuity had been reduced.  When I was awake, I never had the energy to fully complete chores.  I was able to start a load of laundry, but then would get fatigued and never got to folding the clothes in the dryer.  I could drink coffee and still have no problems falling asleep.  I had other signs & symptoms of having a sluggish thyroid such as always feeling cold, having thinning hair, and having a slow heart rate, but this has always been my normal for the longest time so I didn’t think anything of it.

After seeing my primary physician, she ordered labs.  The majority of the labs came back normal, but my thyroid stimulating hormone (TSH) lab test showed that I had an underactive thyroid.  My TSH was 21.60 uIU/mL based on the normal range of 0.34 – 4.82 uIU/mL.  My primary physician also palpated my thyroid and felt some nodules so I had to get an ultrasound done to make sure they were not malignant because there was concerns for thyroid cancer.  I was immediately started on generic levothyroxine which acts as additional synthetic thyroid hormone since my thyroid was not producing enough hormones on its own.  I had to learn to take the medication at the same time every day on an empty stomach.  Once I swallowed the levothyroxine, I had to wait a whole hour before I could eat anything to allow the medication to be absorbed properly into the body.  This was quite the adjustment for me.  On top of that, one of the side effects of levothyroxine is temporary hair loss.  Talk about more bad news!  After starting on levothyroxine, I felt maybe 25% better, but my TSH levels were still not normal.  I had to get blood drawn almost every 1-3 months to monitor my TSH levels.  This was how the doctor was adjusting the dose of my levothyroxine.  Eventually I started to have other side effects from the dose having to be increased.  I was waking up at random times in the morning at around 0200-0300 feeling hot, sweating, and my heart pounding out of my chest.  I am used to having a slow heart rate usually ranging around 49-58 beats/minute so having a “fast” heart rate in the 80’s was highly unusual for me.  I was also having a difficult time sleeping and starting to feel anxious.  My doctor switched me to the brand name Levoxyl to see if that made any difference.  Due to the side effects, eventually I was changed to brand name Synthroid instead.  As you can imagine, this process can take months to years to figure out the right thyroid hormone replacement and the right dose that works for each individual.  It took me about 5 months of multiple blood draws, different thyroid hormone replacements, and dose adjustments before I finally got my first normal TSH reading.  Of course, I still needed frequent lab draws just to make sure that my TSH had stabilized.  Well, 2 months later, my TSH was above the normal range again.  All the while whether my TSH was normal or not, my symptoms of feeling chronically exhausted never disappeared.  They were for sure less severe, but still present.  I felt 50% better, but it was still hard to function when awake.

As you can imagine, trying to deal with a new diagnosis and learning about how to manage the signs & symptoms is quite an adjustment and a disruption to your everyday life.  However, to have a significant other who is not understanding and thinks you are being purely lazy because you cannot muster up the energy to fully complete everyday chores due to a medical condition that you did not ask for is even more hurtful.  I truly do believe that a life partner would love and support you in sickness or health and will not look down on you for something that you had no control over.  Hashimoto’s has been a very difficult health issue to deal with because it is an invisible illness.  On the outside, no one can tell that you’re sick.  On the inside, it is the signs & symptoms that you can’t see, the invisible ones that are the worst.  The chronic fatigue that will not allow you to do anything in a whole day without having to take a nap.  The brain fog that won’t allow you to think clearly and make you forgetful.  The chronic stiff joints, muscle aches, muscle weakness, constipation, and sensitivity to cold that makes you feel like a senior.            

After more lab draws and more dose adjustments, my signs & symptoms of feeling constantly tired never disappeared.  I asked my primary physician for an endocrinology referral.  My endocrinologist spent a long time explaining all of my options, looked at my ultrasound again, and explained in details his plan of care.  He even suggested that I try Natural Desiccated Thyroid (NDT) medications which is thyroid medication made from animal thyroid (usually pig thyroid) instead of the synthetic crap.    I was put on Nature-Throid and for once, I felt like my old self again.  My TSH had normalized, I had no side effects from Nature-Throid and I had more energy than ever.  Why didn’t my primary physician suggest this?  Why did I have to suffer for close to 2 years of still having signs & symptoms of hypothyroidism while on medication and my doctor just telling me, “Your labs are within normal range.”  What about those damn signs & symptoms of hypothyroidism that are not going away?  Do you not care that I still have signs & symptoms?  I don’t care that my labs are within normal range, I just want to be able to function like a normal person.  I don’t want to feel like I am physically awake, but my brain is in a constant state of fog and I can’t focus on anything.  I don’t want to feel as though there are so many things I would like to do, but my body is just too tired to do so.  I’m not that old, but why do I feel like I am in a 70 year old’s body?  Well it turns out that most doctors frown upon prescribing NDT because it is harder to manage how much thyroid hormones you are actually receiving in a pill with the NDT medication since it is made out of animal thyroid and each animal thyroid might contain different amounts of hormones.  All the while the synthetic thyroid medication is created and made in a controlled environment and you know exactly how much thyroid hormone was been placed in each pill.  I understand that, but I also understand that one pill does not fit everyone.  I personally have felt way better on NDT versus synthetic.

My endocrinologist even ordered the thyroid peroxidase antibody test and the anti-thyroglobulin antibody tests which are used to detect the presence of Hashimoto’s thyroiditis.  You see, hypothyroidism can be caused by different things, but in my case, it is caused by my own body mistakenly attacking my own thyroid gland.  The lab results came back confirming that I had Hashimoto’s.  Unfortunately with Hashimoto’s, once again, it is not well understood and there’s no cure for it.  The only thing you can do is decrease the inflammatory process that is occurring inside your body to slow down the destruction of your thyroid.  Eventually, your body will destroy your own thyroid and you will most likely have to increase your thyroid medication dose to make up for having no thyroid left.  On top of that, once you have been diagnosed with an autoimmune disease, the chances of being diagnosed with a 2nd and 3rd autoimmune disorder is extremely high.  Why did I have to be blessed with bad genes?!?  You see, my Mother and sister also have thyroid disorders.

While on Nature-Throid, I was happy thinking that I would get my life back.  Nope!  The company that makes Nature-Throid eventually stopped manufacturing the medication.  It was back to square one on trying to find a thyroid medication that my body would like.  I then was prescribed WP Thyroid which turns out was made by the same company as Nature-Throid and later was no longer being made.  To make matters worse, each thyroid medication goes by milligrams, micrograms, grains, and etc.  When I had to switch to another type of thyroid medication, my doctor had to figure out what the equivalent dose is for each medication so that I would continue getting the same amount while transitioning from the different types of medications.  Some of the medications did not have the exact equivalent doses so my doctor would have to adjust how frequent I took the medications.  I know, it was a hot mess.  On top of that, my insurance at work was not that great either.  You’d think working in healthcare would grant you the advantage of having great benefits, but this was not the case.  My work benefits were wanting me to switch to the synthetic version of the thyroid medication because it would be cheaper for them.  After the many different types of synthetic thyroid medications I have tried through my journey, this was extremely upsetting to hear.  My doctor tried to write a note explaining that I had tried all the synthetic medications they were suggesting I be put on instead and they did not work for me, but my work coverage refused to make an exception for me.  I had to pay 100% out of pocket $250 for 90-day supply to stay on NDT medications.  After that big FUCK YOU, I decided to apply to work elsewhere.  Covering my NDT medications would have been way cheaper for them instead of me being hospitalized with a life-threatening condition called myxedema if I did not have any thyroid medications to take.  Myxedema is the most severe form of hypothyroidism where the person loses consciousness and goes into a coma.  I mean, this is a medication that needs to be taken everyday for the body to be able to function properly.  It’s not a medication that you can skip.  It is also a medication that you take for life.  I don’t need to work for a company that does not care for its employees and their health.

Since WP Thyroid was no longer in production, I then ended up on NP Thyroid which is another NDT that did not work as well for me.  My labs fell out of the normal range and my signs & symptoms of hypothyroidism did not improve.  I ended up on Armour Thyroid which is another NDT that is still on the market to this day.  Armour does not make me feel 100% back to my normal self, but I do feel better on it versus the synthetic medications.  The signs & symptoms of hypothyroidism have lessened, but they’re not completely gone.  I figured since Armour has been around for decades, hopefully they don’t stop manufacturing it.  Everyday is a struggle, but all I can do is just take one day at a time and not be so hard on myself.

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