Hashimoto’s it is more than just a thyroid disease!

The thyroid is shaped like a butterfly!

April 2009 was a great month for me and really changed my life for the better! I had a miscarriage that April after the first time my husband and I tried to get pregnant.

So, why was this so great? I finally got diagnosed with Hashimoto’s autoimmune thyroid disease, also known as chronic thyroiditis, chronic lymphocytic thyroiditis and autoimmune thyroiditis   The name of the disease is after a Japanese pathologist who discovered it in the early 1900’s.  It is more common in women than men. It is more common ages 30 and up.  The condition may be hereditary (genetic) and may be triggered by viruses. It is more common in those with other autoimmune diseases such as celiac disease, type 1 diabetes, and in woman with polycystic ovarian syndrome (PCOS). It is much more common than Graves Disease which is autoimmune hyperthyroidism.

Women who have positive thyroid antibodies, thyroid perioxidase and thyroglobulin, are at higher risk for miscarriage. This has been well documented in the literature. Unfortunately, my OB/GYN for 10 years didn’t know that and wasn’t interested in reading the information I brought for my appointment after my first miscarriage. There is a chapter dedicated to this issue in the Thyroid for Dummies book which is written by a reputable endocrinologist. The book recommended that those who had positive thyroid antibodies needed to be on medication and reduce their TSH to < 2 and be monitored closely throughout pregnancy. Babies of hypothyroid moms not properly treated can have birth defects. I changed OB/GYN’s!

After a woman gives birth she can have inflammation of the thyroid known as thyroiditis, often it resolves, but about 20% develop Hashimoto’s.  It is hard to get an incidence rate, but it appears to be higher than before with varying theories as to why including our toxic environment, rising insulin resistance, and more.  Hashimoto’s is not just about the thyroid because it is an autoimmune disease and the thyroid is the victim. Since thyroid hormones affect everything in your body there are many problems that can arise that can seriously impact health. Your metabolic processes are altered.

For at least ten years prior to my diagnosis I though I had a thyroid condition and I probably did for years before that. Often people have it 10-20 years before diagnosed.  However, each time I went my primary care doctor she checked my TSH (thyroid stimulating hormone) and it was “normal” by laboratory standards. During that time, I was busy working in pediatrics and going to graduate school so I did not go out of my way to find out more than what the doctor told me. I trusted the results, my mistake I would later find out.

Although, I am a Registered Dietitian and have a Master’s degree in Public Health no one ever trained me on autoimmune thyroid disease. In fact, most health care professionals in my opinion do not have adequate training on this disease, so I trusted all the prior results and opinions. But the little voice in my head doubted the results. I have two aunts with thyroid conditions and a 2nd cousin. My symptoms pointed right to Hashimoto’s.  I also had many childhood allergies and asthma, all immune related. Freshman year in college I had mono mononucleosis, Epstein-Barr virus; viruses may trigger Hashimoto’s especially if you have the genetic potential.

There are many different symptoms of Hashimoto’s disease and not everyone has the same symptoms or all of them.  Some of the symptoms I had prior to diagnosis: splitting nails, thinning hair, lowered body temperature, sore throat, varying energy levels, lowered resting metabolic rate, urticaria, dry skin, trouble losing weight, feeling cold, puffiness in my face, dry hair, stiff joints, numb fingertips while sleeping, heavy periods, dry eyes, and more!

Looking back there are some clear symptoms that were missed by other health care providers. In 2000, I was working at the Children’s Hospital of Philadelphia as the inpatient nutrition manager. In the spring I was waking up with red bumps which were hive like that would disappear by the end of the day only to show up the next morning. After a few days, I called my allergist at The University of Pennsylvania (PENN) for an emergency appointment. She said that is wasn’t an allergic reaction that I should see dermatology. So, I did. I went to a dermatologist at PENN and remember that the dermatologist called in all of the teaching doctors in the clinic to look at my questionable bumps. They said it was allergic. In the end no one figured it out. I used a topical steroid cream for some time and it seemed to resolve after a while. There are many case reports of unexplained hives (uticaria) and Hashimoto’s in the literature and in other scientific papers world-wide.

Prior to my diagnosis I would often get a “sore” throat, which later I found was related to inflammation of my thyroid. I would cough a lot and I remember it really annoyed my husband (he is actually a great guy). I would go to the doctor and they said all was fine. Sometimes it was even difficult to swallow.

Another symptom I had before diagnosis related to exercise tolerance. I always think of myself as athletic having played sports all my life, in college, and still involved in various activities today.  When I would play a  long competitive singles tennis matches I would be very exhausted when I was done and often needed to take a nap in the afternoon.  One time I was playing a competitive singles tennis and it was in the high 90’s. We went to three sets. I was hydrating throughout the match, but I was not sweating. I thought this was strange, but another symptom.

Being a Registered Dietitian I know all too well about Resting Metabolic Rates, healthy foods, and calories. After not being able to loose weight while training for a ½ marathon in 2007 I had my Resting Metabolic Rate checked at a fitness lab using reliable equipment. It was a pitiful 1,000 calories well below what was expected. The man administering the test had been doing this for years. The machine said it had calibrated properly. After this I went to my doctor again, and she found a “normal” TSH 2.0 mIU/L., she said “You are fine, no thyroid condition”.  Now I know it was due to my Hashimoto’s disease. I now offer Resting Metabolic Rate testing in my office.

I can go on and on about symptoms. A blog post recent blog on mental health disorders and Hashimoto’s, including bi-polar disease inspired me to share my story publicly. Check out this other great article discussing the link between thyroid disease and mental illness.  I am lucky that I did not suffer with mental health issues, but I did have days when I would had more energy than other days. On the more energy days, especially weekends I had to “go with the energy” to get things done that needed to get done. This is an example of the thyroid shifts in Hashimoto’s. Another reason why TSH is not a great indicator as hormone levels may be changing from high to low frequently.  Friends and family probably had not idea I was feeling this way. I am sort of a “work-a-holic” meaning I like be involved in many professional and personal activities and give everything a 100% , so I do not think they noticed the energy level issues. Looking back I think when some of this is your normal you don’t know any better.

So back to April 2009, I went to a knowledgeable endocrinologist, Dr. Joan Lit, off of City Line Ave. in Philadelphia. I told her about my miscarriage and that I thought I had a thyroid issue. She said, “Have you had your thyroid antibodies checked?”. Hashimoto’s is well known to be a risk factor for re-current miscarriage. I said “No, what are those?” She explained what it meant. I came back for another visit and found out that they were positive, meaning I had Hashimoto’s! It was a special day, I knew that I was not crazy thinking I had a real medical issue that was causing so many problems. It meant, that there was hope for another pregnancy and a baby. (Today, I am lucky to have a beautiful daughter who will soon be three years old). It meant relief! How great was it in a way to hear you have an autoimmune disease?  I know that sounds a little sick, but when you are constantly told that you don’t have an issue when you know you do, it makes you a bit crazy when in fact the people telling you are the ones practicing without the proper knowledge to help their clients. My primary care doctor at the time (she has since moved to another state) ordered a thyroid ultrasound which was consistent with thyroiditis.  Symptoms and family history are important to consider and although previous doctors had not asked, I had told them.

Since April 2009, I have been learning everything I can about Hashimoto’s to help take charge of my health and to help others. I had one more miscarriage and then got pregnant with my daughter just a few months after starting thyroid medication. That year I also started acupuncture with Meredith Murphy in King of Prussia, PA, where my office is now located, to boost and support my immune system.  It does not hurt, is very relaxing, and I highly recommend acupuncture for Hashimoto’s and other conditions. I am forever thankful for Dr. Lit’s diagnosis and sent her a birth announcement and thank you card when my daughter was born. (I stopped seeing Dr. Lit because of a change in my work location and schedule at the time, not due to being dissatisfied with her care, I didn’t know until later how hard it is to find a good thyroid endocrinologist.)

I am happy to report that today, four years after being diagnosed and after seeing several different doctors including endocrinologists, with medication adjustments and nutrition adjustments, I feel pretty amazing for now (I know this autoimmune disease I have to keep on top). Many of my symptoms have resolved. I am now on a T3 and T4 medication called dessicated thyroid medication which I have found many endocrinologists are not “comfortable” with so I am lucky my new primary care doctor is agreeable.  The nutrition changes I made resulted in a big difference to feeling great. I have great energy and my joints aren’t as stiff.  More on this in a future post.  My primary care doctor listens, works with me, and takes my input for managing my autoimmune disease. I have seen many other doctors including endocrinologists who only treat TSH and if I was still under their care I may miserable or on the way to a mental breakdown in all seriousness.

My TSH was never considered high by lab standards, but with the symptoms, trying to get pregnant and the antibodies I was started on medicine. Some doctors will not treat until the TSH is high on laboratory standards even with positive antibodies. Subclinical thyroid issues are common and treatment should be considered.

There are many other issues that can occur related to thyroid diseases. One is reverse T3 syndrome. Some people also suffer from adrenal issues that need treatment before they feel better or progress with thyroid treatment.  Conventional tests are not great at catching these issues.

Insulin resistance (can lead to Type 2 diabetes) and high LDL cholesterol have been found in persons with Hashimoto’s and improvement made with treatment. A recent article on cholesterol and thyroid says the research is inconsistent, but based on personal and professional experience along with the studies that show an improvement I suggest looking into it for those applicable! Persons with these conditions may benefit from complete thyroid testing. It would be a shame to treat a problem that really is a thyroid issue. I can say that today my LDL is at a really great level and although it was never too high since being on an optimal dose of medication it is even better!

Find a knowledgeable thyroid doctor and get the proper tests, TSH, Free T3, Free T4, Thyroid Peroxidase, and Thyroglobulin antibodies as a minimum. If your doctor is not agreeable to ordering the tests, which have been known to happen, in some states you can pay for and order your own lab tests. MyMed lab is one service available pending your states laws. You can order tests and pay and then take your lab slip to a LabCorp and get the results online. If you do this you really should share and discuss the results with your doctor. Autoimmune diseases can arise at any time, so even if you had labs taken years ago, things may have changed.

If you have Hashimoto’s or end up getting Hashimoto’s you can thrive with it, but you need to learn about it and yourself and be your own best advocate!  In a future post I will discuss some of the nutrition changes that have helped me.

I am sharing my personal story in case it helps someone who needs it! Thyroid disorders are often misunderstood.

Be Well,

Lori

My daughter & I in Niagara Falls earlier this summer.

GOOD THYROID BOOKS!