My Hyper-Thyroid Story

crunchy, Graves Disease, health, homeopath, hyperthyroid, hypothyroid, nutrition, thyroid, wellness

 

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My goiter from Graves’ Disease (a/k/a Hyperactive thyroid)

Back in 1996, when I was in high school, I was diagnosed with an auto-immune disease, called Grave’s Disease (a/k/a hyperactive thyroid) and was told I also had toxic multinodular goiters growing around my thyroid.  It sounds a lot worse than it is!  The goiter was benign, thank God, but the symptoms of Grave’s Disease were rough on me as an already self-conscious teenager.

The symptoms of this disease caused me to constantly be nervous, shaky, sweaty, lose hair, have large pupils, feel sick if I hadn’t eaten, and look anorexic due to the inability to gain weight.  I also had a lump growing on my lower neck called a goiter – sounds just delightful, doesn’t it?

I couldn’t sleep on my stomach because my pillow would push against my tender goiter, so I started sleeping with a stuffed bear.  I’d put the bear under my chest to lift my neck up from the pillow to relieve the pressure on my goiter.  I could eat an entire pizza myself, every day of the week, or eat 2 pints of Hagen Daaz ice cream in one sitting, and not gain an ounce (that may sound like a good thing, but it wasn’t!  Kids at school asked me if I were anorexic, and it was hurtful).  A friend once approached me in the hallway at school, and asked if I were sick because I had a lump on my neck.  After that day, I always tried covering it up with my hair so that no one would see it.

After a year or so on antithyroid medications, my doctor scheduled me to have the radioactive iodine treatment at the Nuclear Medicine department of Elmhurst Memorial Hospital to fix my problem once and for all.  This treatment is serious business – the doctor dons protective gloves and drops a radioactive iodine pill down your throat, and you aren’t allowed to touch it.  You are then instructed not to sit by anyone who is pregnant for 3 days after treatment (!?!).  You are to also flush your toilet 3 times each time you go, and eat with paper plates and plastic forks and dispose of them each time.  They don’t want any of your bodily fluids touching someone else.  Scary!  If the radioactivity in my body could harm someone else by sitting next to them, what is it doing to my body on the inside!?

The radioiodine treatment is meant to stop the thyroid from overproducing thyroid hormones.  While I shudder to think what the radioactivity may have done to my insides, I am thankful that my thyroid has not given me any trouble since that treatment.  I am basically in remission, but have to get yearly blood tests to make sure my thyroid doesn’t go hypoactive (explained below).

My goiter isn’t as noticeable now, but I still get a tad self-conscious when I wear a short necklace, which accentuates my lumpiness.  Sometimes I feel the necklace is like a blinking arrow on the Vegas strip, pointing your direction right to my lump.  (Said lump is depicted in the photo at the top of this page).


The thyroid is a small gland in the neck just below the Adam’s apple.  Its primary function is to produce hormones that influence most of the metabolic functions of the body.  Three primary problems can occur for a variety of reasons and with a variety of symptoms.

TYPES OF THYROID DISORDERS

Hypothyroidism

Hypothyroidism is a where the thyroid is not producing sufficient hormones, which may lead to obesity, joint pain, infertility, heart disease, tiredness, depression, lack of concentration, feeling cold, constipation, muscle cramps, weight gain, increased menstrual flow, more frequent periods, itchy skin and thinning hair.  This disorder is most common among women, over 50.  The unbalance in the body from an underactive thyroid can develop slowly and initially be unnoticed but left unattended over time can lead to more serious situations.

Hashimoto’s Thyroiditis

This disease is where the body attacks the tissue of the thyroid.  The resulting inflammation and damage to the tissue results in reduced amounts or cessation of the hormones normally generated by the thyroid.  This is the most common of hypothyroid disorders and occurs primarily in middle aged females but is also seen in men and children.

Hyperthyroidism

An overactive thyroid, this can significantly accelerate the body’s metabolism, causing sudden weight loss, a rapid or irregular heartbeat, sweating, and nervousness or irritability.  Symptoms can include insomnia, anxiety, irritability, bulging eyes, weakness in arms/legs, shaky hands, frequent bowel movements, weight loss, racing heartbeat, premature grey hair, lighter menstrual flow, less frequent periods.  Various forms of hyperthyroidism include:

Graves’ disease – This is also an autoimmune disorder wherein there is too much production of the thyroid hormone.   It is more prevalent among females and is the most common thyroid disorder among children and adolescents.

Toxic adenomas – Over activity may also come from nodules forming that secrete excess thyroid hormone or an inflammation may occur that causes the gland to “leak” the excess.  Goiters that form may contain several nodules.

Subacute thyroiditis – This is a temporary inflammation of the thyroid that causes excess hormones and is usually temporary lasting a few weeks to a few months.

Goiters/Nodules – Goiters/nodules may be solid or fluid filled lumps that form within the thyroid due to the overproduction of thyroid hormone.  Most nodules are not serious and may even go unnoticed.  Some can be very large.  Small percentages are cancerous and require serious attention.


CONVENTIONAL TREATMENTS

Antithyroid Medications:  These drugs help prevent the thyroid from producing hormones by interfering with the thyroid gland’s ability to produce hormones.  While effective in relieving symptoms within a few weeks, hyperthyroidism may return after the drug is stopped.

Thyroid Removal:  The thyroid may be surgically or chemically removed to correct hyperthyroidism and hormonal balance must be achieved by other means.

Radioactive Iodine (RAI):   Some doctors favor radioactive iodine treatment because antithyroid medications do not always provide a long-term solution to Graves’ disease-related hyperthyroidism.  RAI is given as a capsule and works by destroying thyroid tissue cells, reducing your thyroid hormone levels.

If you notice that you are having any of these symptoms, please make an appointment with an endocrinologist.  They will take the appropriate blood tests to see if you have low or high thyroid hormone levels.

Blessings and good health to you!

Karen

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36 thoughts on “My Hyper-Thyroid Story

  1. I have never heard before about Grave’s combined with toxic MNG. Not sure how big is your goiter now, but your skin looks impressive. You can do thyroid neck check for residual lumps (or perhaps have an ultrasound done)

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    1. Yeah, that was when I was 16. I am 37 now, and I have been fine since 1996. I never thought of having an ultrasound done. Since I have been fine for so many years, they never said I should get one. My goiter seems about the same size now as it was 19 years ago. Hope it stays that way, or that I can shrink it.

      Is Grave’s usually on its own?

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      1. Grave’s is caused by TSI antibodies generated by immune system; they are acting similar to thyroid stimulating hormone (TSH) and causing thyroid to increase production of thyroxine (T4). Therefore Grave’s is confirmed by doing blood test for TSI antibodies.
        Multinodular toxic goiter often found in individuals over 45 with history of long standing multinodular goiter after exposure to high iodine levels (ate kelp and developed thyroid storm) such as you can see on attached video https://youtu.be/eMBxONWuy8Q
        It usually looks like this: https://youtu.be/yFa2mReaR2M.
        Ultrasound is useful to determine thyroid volume using method proposed by Brunn, et al
        Radioactive iodine treatment “burns out” thyroid tissue within the capsule so thyroid looks after treatment like a dried plum, so it is unusual as well that yours stayed the same size.
        BTW, one lady was able to shrink her goiter using same oil you are using now (http://www.doterrawithjacqueline.blogspot.com/2015/03/what-is-wellness-advocate-and-why-am-i.html)
        so hopefully it works for you as well.
        To monitor the progress you can measure your neck circumference or taking “side view” pictures
        Best wishes!!

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      2. Wow, thanks so much for all the info. Now I am so confused! My blood tests come back within normal range every year. So, I have been “normal” for 19 years. And my goiters look like that video you posted, when I swallow too. Do you think I get an ultrasound? The lady in the 1st video seemed to think that the goiters could become malignant – and that freaks me out. :/ I had no idea about that one.

        Thanks again for your input. I mean, I was only 16 years old when I had the RAI treatment, so I don’t remember a whole lot of what my doctor said. He no longer practices, and I don’t currently see an endocrinologist. Maybe I should??

        Anyway, thanks again. Have a great day!

        Kare

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  2. The toxic nodules almost never malignant 1 in 1000 cases reported in medical literature (they have atypical cells which making these nodules toxic).
    The main point is that a grave’s disease goiter especially in young patient (under 20) does not have nodules; it is possible to have nodules when patient has Grave’s and Hashimoto’s (positive blood test for TSI (Grave’s) and TPO (Hashimoto’s) antibodies at the same time.
    I never read about Grave’s and toxic nodular goiter at the same time
    It looks like at the time of diagnostic the doctor only did the blood test for thyroid levies but did not do an ultrasound or TSI antibodies blood test. I could speculate that it could be thyroiditis and/or Grave’s. Sometimes during treatment for Graves the high dose of RAI causes the inflammation with nodules formed after treatment.
    it will be a very good idea to do an ultrasound of your thyroid with Doppler color flow to see what is going on, especially if you noticed smaller lumps during swallowing . These can be nodules but it hard to tell without seen the image or video.

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  3. Thanks for the link but the YouTube says that video is private and does not let me see it. I subbed to your channel but still cannot see it maybe change it to unlisted or send it to my mail.
    i ‘ll reply as soon as I’ll watch it! Best

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  4. Thanks! The swelling is very symmetrical (except maybe for lower right corner) without visible dominant mass. In my opinion it has rather many small nodules no larger than 1.5…2cm scattered throughout thyroid. It looks similar to MNG caused by Hashimoto’s thyroiditis (similar shown on this video, https://youtu.be/4UqFYpgrOCU time 0.48).
    Let’s hope that ultrasound will be similar to my guess.
    Many blessing!!

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  5. Thanks! I have a number for a new endo doc all ready. I just have to call and make the appt. I would never have done anything if you hadn’t mentioned it, because I just had a blood test and it was normal. I am going to be using that Sandalwood oil on my neck too. Can’t hurt! Have a great weekend!

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  6. You too! Hopefully, there will be nothing serious! Fingers crossed!!My apologies for being a trouble maker but, better be safe than sorry (I learned it while working in thyroid imaging lab:)

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  7. Karen:
    My apologies to bother you again, but I printed out your blog post and showed it to retired endo doctor. After hearing his opinion I draw the tentative summary which may help you to prepare questions for a doctor’s visit:
    • After radiation treatment for Grave’s you become euthyroid (almost all people are going hypo within 1 year of treatment) [same thing mentioned in article at http://gdatf.org/about/about-graves-disease/patient-education/treating-graves-different-strokes-for-different-folks/
    • The size of your thyroid did not change, but you were relieved from compressive symptoms;
    • Multinodular toxic goiter cannot develop in young patients; however it is very possible to have “mixed” goiter as a result of concurrently having Hashimoto’s and Grave’s.
    How are you going to apply oil to your thyroid area? Are you going to rub it in? If so do not use extensive pressure to avoid thyroid mechanical overstimulation. Also, let your doctor know if you happen to find some “hard spots” in your thyroid area.
    Regards, O.T. (“thyroid geek”)

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    1. Thanks so much for doing this! I just put drops of the oils in a roller ball bottle, added fractionated coconut oil, and gently roll on/rub it in 3 times a day.

      I wonder why my blood tests are always normal. I made an appt with my family doctor for tomorrow, so he can refer me to a new endo doc that I want to go to. I will print this out and bring it with me. Thanks again!!

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  8. Hey, thyroid geek,

    I went to my family doc today, and he said I should have a thyroid ultrasound. Thanks again for mentioning that to me. If you hadn’t brought it to my attention, I probably wouldn’t have set up an appt! He had me do some blood tests for some other reasons, and referred me to a new endocrinologist in his building. Hoping to get some answers soon. Thanks again!

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    1. Medical ultrasound transducers contain more than one operating frequency. The following frequencies are a guide to frequencies typically used for ultrasound examination:

      2.5 MHz: deep abdomen, obstetric and gynecological imaging
      3.5 MHz: general abdomen, obstetric and gynecological imaging
      5.0 MHz: vascular, breast, pelvic imaging
      7.5 MHz: breast, thyroid
      10.0 MHz: breast, thyroid, superficial veins, superficial masses, musculoskeletal imaging.
      15.0 MHz: superficial structures, musculoskeletal imaging.
      The high quality thyroid ultrasound is the one done at 11 MHz, 7.5 MHz is low resolution and can produce artifacts (inflammation looks like a nodule; subsequent high frequency ultrasound shows no nodule, patient is impressed 🙂

      Proper patient positioning is critical to performing high quality ultrasound. The patient is made to lie flat and adequate neck extension is achieved by placing pillows under the shoulders. Coupling gel is then placed on the transducer to enhance image generation. The transducer is moved over the patient’s neck to obtain a series images of the thyroid gland and other neck structures.
      High quality thyroid ultrasound reports include measurement of thyroid gland size, architecture, blood flow on Doppler evaluation, presence of nodules, nodule size and characteristics and any other pathology like neck lymph nodes or parathyroid glands. In addition, evidence of compression or displacement of adjacent structures like trachea or internal jugular vein should be assessed.
      (http://www.gdatf.org/about/about-graves-disease/patient-bulletins/thyroid-ultrasound-101/)
      Your “neck mass” can be a large cyst as well but hopefully the ultrasound will tell what it is.
      Best wishes!

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  9. So, I had the thyroid ultrasound done. 3-nodule goiter (as I already knew), but it said one was solid and 2 were calcified. My family doctor had ordered that test, and I don’t go and see my new endo yet until next Friday, so I won’t know what the new doctor thinks about it until then. My family doctor called to say that if the goiter grows, they would want to do a fine needle aspiration.

    I am so stinking tired…and to think, I still did a 25-mile bike trip up in MI with my husband last weekend! I couldn’t cancel, we’d planned it for months!

    Anyway, I will find out next week what my new doc says! I hope there is something they can do to help me. Thanks again for mentioning to me that I should get an US. I seriously had never thought about it before…

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    1. Thank you for an update . Congrats on completing the bike trip!
      The coarse calcification is often result of past inflammation a nodule with calcified rim are almost always benign.
      Is the biggest nodule located at lower pole of right lobe?

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      1. Thanks!! I have to admit, I was complaining a bit. I have no idea – they didn’t go into detail. I assume my new doc will explain at my appt next Friday. It said I has some vascularization of left lobe, or something.

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      2. Some vascularization of left lobe is present in live thyroid tissue (if it is destroyed by radiation, there will be no presence of blood vessel). This explains why your blood levels are used to be normal (not going to hypo)
        It supports the wild guess that most likely have had Hashitoxicosis (with or instead of Grave’s); the radioactive iodine is not absorbed by inflamed tissue; it most likely killed only a part of your thyroid. Nodules that are less than 1 cm in most cases have no clinical significance.

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  10. So, have you seen a new doc?
    Was he able to say if you had a Grave’s or Hashitoxicosis when you were 16?
    Best!

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    1. Hey! I did see a new doc. She doesnt think that I had Grave’s when I was 16…just hyperthyroidism. She wants to do a needle biopsy of the goiter soon. Sje said that I can have the antibodies tests, but that it wont change anything….since we already know I have tyroid issues. So, hopefully the goiter is benign. She doesnt think my symptoms have anything to do with my thyroid… ugh, square one. But, I keep hearing that people with gluten sensitivity can have same symptoms as hypothyroid, and mimic the disease. Going to do an elimination diet for a few weeks.

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      1. May I ask how big is the nodule your doctor will do the FNA?
        if you have normal lymph nodes , the odds of malignancy is very small. For best results the biopsy shold be performed under live ultrasound guidance. Also use ice pack after procedure to avoid developing a “hickey” (bruise).
        Check this video out: https://youtu.be/CN5yFGaMDCs

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  11. The largest one is over 1 cm. They said that they usually do biopsy when it is over 1 cm. Thanks for the advice! I will do the icepack thing, and use my essential oils for inflammation and bruising. 🙂

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    1. I see. Good luck with procedure; I will be praying for benign results!!
      The patient in the video has quite prominent nodule (like an Adam’s apple :)) and it is benign despite its size (over 3 cm)

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  12. Thanks for the prayer! We are praying too! That video….I couldnt watch too much of it…squeamish…haha. But glad to hear it was benign even though that big. I hope I dont pass out when I get mine done!

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    1. I could be wrong but having root canal done on upper molar (#2 or 15, so called “eye teeth”) with ring in your mouth is not a fun either:) especially having it done with rotary files!

      Like

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