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From Undiagnosed and Untreated to Happy with Hashimoto’s

It’s a common complaint, “My doctor sent me away with an antidepressant and said my symptoms were all in my head.” We know that’s not right and your doctor should know that, but unfortunately, that’s just not the case. Read one woman’s story about her journey with Hashimoto’s that went undiagnosed and untreated for 20 years and how her knowledge and self-advocacy has helped her get better!

What is Hashimoto’s disease?

Hashimoto’s is an autoimmune disease. It’s when your body thinks that your thyroid gland is a foreign substance and begins attacking it. Many doctors believe there is nothing that can be done for the condition and will let it go untreated; however, leaving it untreated leads to further damage of the thyroid.

When did you find out that you had Hashimoto’s?

I actually didn’t find out I had Hashimoto’s until after I had a hysterectomy because I thought all of my symptoms were hormonal. I thought my symptoms stemmed from my menstrual issues or Irritable Bowel Syndrome (IBS) because that’s what all my doctors told me.

I was in my 40s when I learned that I had Hashimoto’s and hypothyroidism. I went to Holtorf Medical Group and they were the first to test my thyroid antibody levels. The results of my antibody tests were at the highest end of the reference range!

What were your symptoms?

Hashimoto’s disease symptoms swing between hyperthyroid and hypothyroid. Most of my symptoms were gut related because 75% of the immune system is in the gut and since Hashimoto’s is an autoimmune condition symptoms tend to manifest themselves as gut issues. This meant that I had bouts of constipation and bouts of loose bowels. I never felt normal in that aspect. I also experienced fluctuations in my weight; I was very thin before having children and something just clicked after having my third child. I couldn’t lose the excess weight. I also experienced extremely dry skin and hair loss which I never seemed to get back until after I underwent treatment.

How did Hashimoto’s affect your daily life?

Because my digestive issues were so severe I didn’t want to leave my house for extended periods of time. I had a hard time planning events and tried to work life around my digestive schedule. I had to be very cautious when eating because certain foods really upset my stomach and I learned to eat a very bland diet. The low energy and brain fog made it difficult to raise a family.

How long did it take you to get diagnosed?

Between the onset of symptoms and the actual diagnosis, 20 years elapsed.

What did your previous doctors say?

The doctors suggested my symptoms were caused by IBS which was the “popular diagnosis” at the time. If you had stomach pains or any sort of gut issues and the doctors didn’t know what to say, they would say, “You have IBS.” So, to them, that explained all my stomach issues and I would just have to live with it. They also suggested I had a stomach ulcer, but that was not the case either. My upper and lower GI test came back normal.

Looking back, when do you think your Hashimoto’s symptoms began?

Knowing what I know now, it was probably when I first got my period. I experienced heavy bleeding, extremely painful cramps and migraines with every cycle indicating that there was a hormonal problem, but I don’t know for sure which came first, the thyroid dysfunction or the hormone imbalances.

You’re currently undergoing Hashimoto’s treatment, right? Would you mind sharing what that is and how it has helped you?

I am currently taking a compounded T3 medication. I really like the time-release version and the energy it gives me throughout the day. I also take Low Dose Naltrexone (LDN), an immune modulator. This has really helped my antibody count come down. They seem to lower by 30% at every visit. Although I’m not “normal” yet, I am getting there and am much better than when I first started.

I also take nutritional supplements to help with the deficiencies that come along with thyroid disease and combat gut-related symptoms like magnesium, probiotics and digestive enzymes. I also take iodine (which many think is controversial, but it has definitely helped me and you can learn more about its benefits for Hashimoto’s patients here) and selenium.

It seems like you know a lot about your condition. How important do you think self-advocacy is?

Honestly, it’s important to remember that you’re your own best advocate! You know how you feel and you know whether what you’re hearing from your doctor is really what’s happening. You have to push to get yourself better. That’s what it took for me. Granted I had to be pushed into coming to another doctor because I went so long without the proper treatment, it didn’t seem like anyone could help me.

I think women especially become used to how they feel. It becomes the new norm and you live with it. There’s no calling in sick to your daily life so you just get used to feeling bad and don’t think it’s ever going to get any better. I look back at how things were before I was diagnosed and can’t believe that I lived like that. I never want to go back to feeling like that again!

What are some suggestions you have for people in similar situations?

I would encourage people to listen to what their body is telling them. I would also suggest getting your thyroid and hormones checked at an early age and don’t settle for your doctor telling you no!

What are some resources that have helped you learn more about your condition?

When I was first diagnosed I had never even heard of Hashimoto’s, but now I feel like you can get so much information from Facebook and the internet in general. I feel like I see the information everywhere!

When I first found out I was hypothyroid I stumbled upon the National Academy of Hypothyroidism and was encouraged to learn all I could. I enjoyed all the information and the self-test.

It’s important to remember that so many people are unknowingly suffering from this condition and aren’t getting the answers and treatments they need so I think the more information out there and the more information you can get, the better off you’ll be and you’ll be able to help others and live a more fulfilled life.

*This can happen to anyone and has happened to many! That is why the National Academy of Hypothyroidism is here to help educate and empower you!

About the Author

Naomi Parker

Patient Advocate

Naomi Parker is a patient advocate that is enthralled by the medical field. Hypothyroidism became a topic of interest over the last few years while she worked amongst alternative medicine doctors as a front office assistant. She believes that information is key and strives to become better informed so as to help others achieve success and wellness.

Naomi has written various articles concerning hypothyroidism including information on diagnostics and treatment. She enjoys learning alongside others and passing on vital information regarding this condition. Naomi is actively monitoring and writing for the National Academy of Hypothyroidism both on the site and social media.

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Sharon Barnes
Sharon Barnes
4 years ago

Have had Hashimoto’s for years. Still struggle with digestive issues, pain, nausea, low basal body temp 95.9 – 97.9
Cold hands and feet…..the whole gambit. Recently learned of LDN and tried to get my doctor to try the LDN and he said he didn’t know anything about it. I researched and printed out 2 pamphlets for him and took by his office. He will not even discuss the idea. I am looking for a doctor who is open minded in my area, to see if I can get some help with these issues. Any help would be appreciated.

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