December 2008 I made an appointment with my family doctor because for a few weeks I had been having dizzy spells. I had assumed initially they were related to being hypoglycemic so when I increased my food consumption they persisted I figured there something else going on. As I had begun to research my symptoms of dizziness and thinning hair I had figured I had become anemic. Anemia sounds like a good guess as I had given birth in the past year, nursing and had two surgeries. I was quite certain I was anemic.
Once my doctor saw me he was quick to diagnose me with hyperthyroidism. In addition to the dizzy spells, thinning hair my pulse was 120-130 at resting, my thyroid was enlarged and I had lost roughly 65lbs in about 8 months. I had contributed the weight loss due to nursing and chasing after a toddler. As he described more symptoms to me of hyperthyroidism, I discovered I had been having ALL of those symptoms!
Hyperthyroidism symptoms are:
• Feel nervous, moody, weak, or tired.
• Difficulty sleeping
• Have hand tremors
• Fast or irregular heartbeat, or have trouble breathing even when you are resting.
• Feel very hot, sweat a lot, or have warm, red skin that may be itchy.
• Have frequent and sometimes loose bowel movements.
• Have fine, soft hair that is falling out.
• Lose weight even though you are eating normally or more than usual.
• Enlarged thyroid
• Irregular or absence of menstrual cycles
The symptoms of hyperthyroidism are not the same for everyone.
In order to accurately determine the severity of the possible diagnosis of Hyperthyroidism we needed to do blood work and have an ultrasound done on my thyroid. I got bloodwork done the the next day to check my TSH level, also other thyroid hormone levels (T3, T3, Free T-3, Free T-4) and my ultrasound. My TSH came back so low it was almost undetectable, low TSH is a sign of a hyperthyroid, and the ultrasound reveled my thyroid was twice the size it should be. No doubt about it my thyroid was indeed hyper! Immediately my family physician put me on Lopressor, a bettablocker, at a dose safe for nursing until I could meet with an endocrinologist to be properly diagnosed and treated. Unfortunately finding an endocrinologist to see me within 2 weeks as recommended by my doctor proved A LOT more challenging than I had anticipated.
It was nearing the end of December at this point, after calling at least a dozen endocrinologists in my local area I discovered the earliest they could see me was April-May in spite of me explaining to them the dire situation that I needed to be seen and treated ASAP! I then started calling endocrinologists throughout my state and up to an hour away. I found one in Salisbury MD that was able to see me next week, even though I told them I lived in Delaware and gave them all of my insurance information the day of my appointment driving an hour with my family they told me they couldn't see me because they couldn't accept Delaware BCBS in MD yet. Talk about frustrating!
Meanwhile I got a copy of the book Living Well with Hyperthyroidism and Graves Disease by Mary Shomon. I also HIGHLY recommend Graves Disease: A Practical Guide and Advances in Graves Disease and other Hyperthyroid Disorders by Elaine Moore
I put in a call to John Hopkins in hopes they had a hyperthyroidism specialist, I was only 1.5hrs from Baltimore. Meanwhile I was still trying to find an endocrinologist to see me locally until I could get an appointment at John Hopkins, the wait could be months. I finally found one in Wilimington, DE recommend by my birth center I used. On the day of my appointment I drove there by myself, it seemed easier than taking my 10 month old and toddler with me at the time. I was unprepared for what would happen next. The endocrinologist diagnosed me with Graves Disease, severe hyperthyroidism. Graves’ disease (GD) is an autoimmune condition characterized by elevated levels of thyroid stimulating (TSH) receptor antibodies with increased production of thyroid hormone. Among patients with hyperthyroidism, 60–80% have GD. It is 5–10 times more common in women.
He prescribed me a strong bettablocker, not safe for nursing and strongly recommended Radioactive Iodine(RAI), I-131. RAI is often recommended because it's inexpensive, "effective" and the least cumbersome due to requiring few follow up visits. RAI is often used to treat thyroid cancer, however it comes with numerous risks clearly because it is radioactive.
Some of the very real side effects of RAI experienced by patients:
1. The skin on the body peels off in a similar fashion as mild sunburn. This may include the mucosal linings.
2. No sense of taste for at least a month. Others have reported 3 months, and some never regain the sense of taste again.
3. Very swollen and painful salivary glands for a month. Some patients experience this years after RAI, and some have the loss of salivary gland function for life.
4. Digestive problems including food not being properly digested, constipation, or extreme diarrhea for long periods of time.
5. Sudden onset of allergies or food sensitivities including the inability to eat gluten. 6. Iodine deficiency due to low-iodine diet prior to RAI.
7. Adrenal fatigue
8. Compromised immune system
9. Burning tongue
10. Compromised fertility in women
I remember he vaguely discussed a thyroidectomy with me but I do remember him saying that the risk of me dying during the procedure was high, he never explained why though which was perplexing and terrifying. I asked him about PTU (Propylthiouracil) or methimazole, antithyroid drugs, that were safe for nursing. He said because of the severity of my condition I would need a dose of PTU at least 800mg or greater and he was doubtful it would work. A dose of 300mg of PTU or less was safe for nursing. PTU was recommended over methimazole for nursing mothers due to the lower lactation risk according to Medication and Mother's Milk by Hale.
If I accept the treatment of I-131 I would have to wean prior to taking it. It was recommended I be away from my children for 48hrs or possibly longer, I pretty much have to be quarantined - even using separate bathroom facility along with eating utensils from others. I-131 essentially kills the thyroid and then there is a 90% chance of developing hypothyroidism within several years. In which that case you need Synthroid (a synthetic thyroid hormone) for the rest of your life,. Fortunately Hypothyroidism doesn't carry near as many risks at Graves or Hyperthyroidism does. I researched a bit on how long after I-131 I would have to delay nursing. Some studies stated 8 days, some 14 days and some 50 days. I went to the hospital where I worked in the lactation department and made copies from the lactation texts about 1-131. Left untreated Graves can cause congestive heart failure; I had already experience chest pain once when I forgot to take my bettablocker for 24-36hrs. I knew my condition was serious and I needed treatment. I left his office devastated, went to my car and wept uncontrollably. I had waited for almost a month to be seen by an endocrinologist and the experience was awful. I knew there had to be another option! The next day I tried to find another endocrinologist for a second opinion.
Just before treatment in February
It was now mid-January, I was on my bettablocker still waiting for an appointment with another endocrinologist. I finally had found an endocrinologist that was able to see me soon. She too recommended RAI. Everything I read about RAI and just how permanent it was made me very uncomfortable. I felt I was trading one "evil" for a "lesser evil". I didn't want to kill my thyroid, I felt it just needed some therapy. Plus the thought of putting something radioactive in my body seemed so wrong.
I told my new endocrinologist about the research I had done, how badly I desired to preserve my nursing relationship, the concerns I had with RAI and that I was adamant I try 300mg of PTU first before considering RAI. She was also very hesitant PTU would work for me. She had some concerns being on PTU long-term could impact my liver and decrease in blood platelets, though these side-effects are rare. She agreed to PTU and bloodwork in 6-8wks to see how PTU was working. A picture taken of my husband and I late January/early February. I think I was below 120lbs here, according to the BMI chart an "optimal" weight but it's clear I was not in optimal health by any means. Sometimes when I wish I weighed less than my current weight then I'm reminded of this picture and that weight has nothing to do with overall health nor well being.
So I started treatment early February finally, almost 2 months after my family physician diagnosing me with Hyperthyroidism. I started to feel better; I got more energy back, my concentration improved, I started to gain weight and other symptoms of Graves started slowly fading away.
8 weeks later I had a follow up appointment with my endocrinologist. I held my breath but didn't know what to expect. I felt a lot better, but I wasn't sure what my lab work would show. To her surprise ALL of my levels had improved - drastically! My T3 total before treatment was over 800, it should be between 97-219 normal rage - was down to 260!!!! All of my levels improved praise God! My TSH had increased also. I was ecstatic! The cynical endocrinologist wanted me to come back again in 3 months, I think she was anticipating my thyroid wouldn't have responded as well as it did. I continued on the same dosage of PTU and my bettablocker, going back every 3 months for a follow-up.
Meanwhile I began integrating supplements into my diet for my thyroid. I begin cooking with coconut oil. I also started taking L-Carnitine 3,000-4,000mg (amino acid), 600mg of Lipoic Acid (amino acid), calcium/magnesium supplement, Motherwort/Lemon Balm/Buggleweed compound herbal tincture, spongia toasta 30C (homeopathic) and thyroidinium 30C (homeopathic).
I was well enough now to attend the Midwifery Today conference in Denmark in April, a great way to celebrate! Look at the difference in appearance in less than 3 months!
Since Spring of 2009 I tried my best to get my thyroid checked twice a year. During summer of 2009 the endocrinologist I was seeing then remarked that my TSH was still low but she wanted me to stay on medication. I had told her all of my symptoms were gone, my menstrual cycle returned, I had gained weight and I felt fine. At this time I believed it was best to slowly wean off of the medication to allow my body a chance to repair it's self. She was not supportive of my idea and didn't have an answer for me as to why my TSH was still low in spite of having no symptoms of a hyper thyroid. I decided myself to slowly wean off of my medication, at this point I was only on PTU, the antithyroid medication. I did this without my "doctors approval" but this is my body. I accept ownership and responsibility for my choice, good and bad. I refuse to let someone who has gone to medical school to make themselves an authority over my body and make decisions for me. I believe we inherently know what is best for us and should follow our instincts.
I switched to yet another endocrinologist that does not desire to prescribe medication simply because my TSH is the ONLY thing that is low. In 2010 I became pregnant with my 3rd son, I had my thyroid levels checked twice during my pregnancy. I was not on any medication. I took the above herbal and vitamin supplements as I remembered, but not consistently. After the birth of my 3rd son I had anticipated my thyroid might go hyper again due to hormones being all over the place postpartum. To my surprise it did not! My endocrinologist officially diagnosed me as "sub-clinical remission" from Graves Disease. WOOT! WOOT!
If you have been diagnosed with a thyroid disorder, there is hope! A thyroid diagnosis is not the end of the world. It does not always require medication. It does not require permanent treatment like radiation. It does not mean you have to be treated ASAP. Please get a 2nd or 3rd opinion and become an advocate for your own health!
In addition to the books I've mentioned above, here are some good websites you may find helpful.
If you know of any other sources, books or websites, please share them in the comments section.