The Hashimoto’s thyroiditis journey

The Hashimoto’s thyroiditis journey

My name is Cathy and I have Hashimoto’s thyroiditis. The name sounds unpleasant; the disease is unpleasant. Hashimoto’s is an auto-immune disease that gradually destroys the thyroid gland.

What’s the big deal?

The thyroid, a butterfly-shaped gland that sits at the front of your neck, produces hormones that affect almost all the processes in your body. When the thyroid is not functioning properly, the result is a thyroid disorder, one of which is Hashimoto’s. I have spent the last six years trying to manage my fickle thyroid and its unpredictable symptoms, and frankly, I am exhausted, frustrated and a little bit irritated.

For most of my adult life, I had a relatively agreeable existence with my thyroid. I was diagnosed with hypothyroidism in my late teens, not surprising considering my family history. I was living symptom free, taking medication daily and getting blood tests annually. Things were good, friendly. Then, at the age of 37, I had a child, and my thyroid decided it no longer wanted to be friends, but enemies. My thyroid began wreaking havoc on my body and my life – both mentally and physically. In 2013, at the age of 40, an antibody blood test and ultrasound confirmed my diagnosis of Hashimoto’s thyroiditis. Despite having lived with hypothyroidism for nearly 20 years and seen countless endocrinologists, I had never even heard of Hashimoto’s thyroiditis – never had an ultrasound of my thyroid. There was clearly more that I needed to learn, because I felt horrible. I had to take ownership of this disease, not the other way around.

With Hashimoto’s, your body essentially turns on itself, producing antibodies that gradually impair your thyroid gland, causing a decline in function. The result is an underactive thyroid that produces less hormones (T3 and T4), or hypothyroidism. Hashimoto’s is a common cause of hypothyroidism, however, a person can be hypothyroid and not have Hashimoto’s. Hypothyroidism is a condition, whereas Hashimoto’s is a disease.

The treatment for Hashimoto’s is the same for that of hypothyroidism, but for me, it was a whole new ball game. Hashimoto’s plunged me into a life of unpleasant symptoms, as well as frequent doctor visits, medication dosage changes and blood tests. I struggled just to feel better and return to some normalcy. Over the years, symptoms kept surfacing – heart palpitations, dry eyes, fatigue, frequent colds and infections, breast pain, swollen lymph nodes, anxiety, irritability, intolerance to cold, seasonal allergies, depression, hormonal acne, dry skin, night sweats, joint pain and stiffness, sleep disturbances, muscle aches as well as some other symptoms far too embarrassing to mention. I found that many endocrinologists relied too heavily on my blood test results, prescribing medication simply to achieve a “normal” range, ignoring my persistent symptoms. Often, it was necessary to fight for medication dosage changes.

Six years later, the Hashimoto’s journey continues, and it will never end. I made the decision to educate myself on the proper way to take medication; search for a compatible endocrinologist; eat healthy and exercise; tolerate and treat some symptoms; and get annual physicals. Nevertheless, symptoms (some old, some new), unpredictably appear, requiring medication changes and blood tests. It’s a never-ending, vicious cycle. There will always be periods – maybe weeks, maybe months – during which I will simply not feel well, and those around me will not get the best of me. Which leads me to my final point: thyroid disease is unpleasant because of how it affects you physically, but perhaps the harder journey is mental. Be well, don’t quit, cut yourself some slack and ask others to do the same.

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Comments

11 Comments

  1. You can heal with a raw food diet and juicing, I know a person who healed theirs like that. Best wishes!

  2. I am 65 diagnosed with Hashimotos 42 poorly for about 15 months before blood tests confirmed it. I was put on Tyhroxine but my Thyroid was pushing on my windpipe and I had to have it removed. at age 43. It has been a massive journey. Many issues with being on Medication but for the last 5 years things are on an even keel. I am fit and health. I have a routine diet and so things to keep active. There are many of conf articles on Thyroid disease, I think all remedies etc do not suit all sufferers. Hope you are keeping well.

    • How are you doing since your thyroidectomy? please feel free to email me at susieula@gmail.com and share your experience as I am considering having a thyroidectomy and my thyroid is pushing on my neck/trachea as well.

  3. Diagnosed 7 years ago with Hashimoto. So many things going on for years. I had Tyroidectomy in 2015. Developed anxiety, muscle pain, more groin inflammation, chronic hives and now lymph nodes and increased anxiety. Doctor retired. New Doctor
    Said imaging good. Blood work showed medication could be increased to feel better. Levothyroxine 88, changed to Levoxyl 100. Heart palpitations. Went back. Anxiety and lymph nodes worse. Now on Synthroid 50 and anxiety medications. Symptoms better but still persist. Trying to figure out what to do next. Last year Carpal Tunnel both hands for 6 months. The mental battle is tough

  4. I suggest to those individuals affected by Hashimoto (abnormally high TPO blood test & normal or elevated TSH ) to consider trying the protocol of this clinical trial which involves taking moderate doses of myo-inositol & selenomethionine (=selenium):

    Myo-inositol plus selenium supplementation restores euthyroid state in Hashimoto’s patients with subclinical hypothyroidism.
    https://www.ncbi.nlm.nih.gov/pubmed/28724185
    Full text:
    http://www.europeanreview.org/wp/wp-content/uploads/051-059-Myo-inositol-and-selenium-restore-euthyroid-state.pdf

    Initial effectiveness may be detectable in a few weeks or days (reduced tiredness) & final effectiveness in about 2 months using TPO, TSH & T4 testing.
    A small note of caution: selenium in excess may cause in rare cases severe constipation. Measuring the blood level of selenium before starting the treatment allows to adjust the dose of selenium supplementation.

  5. There is no one size fits all for healing your body, where one person can healing plainly on a juice diet plan another has an entirely different host of issues that make the difference on how to treat them. For instance, genetic dispositions to certain diseases, gene mutations, slow production of specific hormones. One must fight the fight, trial of elimination to find ones ultimate path to healing. It takes much more than a healthy diet and exercise. It take perseverance of the mind.

  6. Hi, I am 41 in March and after I had my last baby my thyroid decided after years of behaving on medication to throw all sept of issues at me! Swollen glands during pregnancy of 3rd child. Then once breastfeeding finished I started getting constant glue ear to the point I got vertigo, then finally found a supplement to help immune system slightly to avoid all these glue ear episodes. It’s called black seed oil or I take the black seed powder. Then last year I started getting a strange rash on my knee that I had a biopsy on last week, will find out what it is this week. The swollen glands are annoying , when I swallow i feel the glands rubbing against eachother and popping sound from them when I try to open my throat up to stretch it. Glands under armpits which made me worried about breast cancer etc etc. anxious and worried about my health . Using ashehanghanda supplement which has helped me feel calmer. My dr trying out natural stuff on me.

    Glands are my most annoying part. So frustrating

    Therese

  7. Depending on your numbers, “active” thyroid, or T3, may serve you better than synthroid. In the US, naturopaths are pretty much the only ones who will give it to you, though it’s prescribed in Europe. I combine them as needed and add and subtract T3 in accordance with my symptoms.

  8. Warren Christoforou July 12, 2020 at 7:44 am · Reply

    Hi, have you ever had PTH blood tests for your parathyroid glands. I’m having similar problems and just found out in case studies, nearly half the people had hypothyroidism and hyperparathyroidism, which coexisted together. Might be worth having PTH blood test if you have not done so yet.

  9. I have hypothyrodism and take 10 grains of Armour Thyroid (pig thyroid) and seem to be doing well, numbers wise. However, I am having this reoccurring issue with a full burning pain in the center of my breastbone (sternum) to the point of a overnight stay at the hospital. All heart and bloodwork is normal, no GERD.
    Was one of your symptoms of Hishimotos Disease the burning pain in the sternum as well?

  10. I’m looking for information and feedback on having a Thyroidectomy – PROS/CONS
    I’m looking for information and feedback on Thyroid Nodules
    Pros and Cons of having a biopsy of the nodules/cysts?
    I’m looking for information on what does Hashimoto disease attack next if I have my thyroid removed? what organ will it attack next??

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About the Author

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Cathy R.

Cathy R. was diagnosed with Hashimoto's Thyroiditis in 2013. She is a mother of one. She enjoys writing, reading and volunteering. She currently is being treated by Advocate Medical Group, endocrinologist, Dr Chung-Kay Koh in Park Ridge, Ill.