Sunday, February 9, 2014

Health challenges

The last time I mentioned my health, I had an appointment on February 11 for a biopsy of my thyroid nodule, but things have changed a lot in the last few weeks. Within the week after that January 13 doctor appointment, it felt like the nodule was growing bigger. It was certainly becoming more uncomfortable and problematic. My voice was getting more hoarse. My cough became more frequent. Swallowing was becoming more challenging. Talking was becoming difficult.

I called the doctor's office on Monday, a week after that appointment, desperately seeking some type of comfort -- a biopsy sooner than February 11 or even surgery to remove the nodule. As it turned out, the doctor was out of town for the week, and the nurse made the mistake of telling me that I wasn't going through anything that any other thyroid patient doesn't go through. I knew for a fact that she was dead wrong about that. I've recently had lots of people share their thyroid stories with me, and the vast majority never have nodules that make them miserable. I also knew that I had all of the symptoms for thyroid cancer.

I complained on Facebook, and amazingly enough, a friend saw my rant while sitting in her endocrinologist's office. She showed it to him during her appointment, and he said that there was no reason I needed to wait so long for a biopsy appointment. He does them every week. So, I made an appointment to see him on January 21, but we had a snow storm overnight, and I got stuck in the snow right outside my driveway because the plows hadn't been by our house yet. I rescheduled for Thursday the 23rd and learned that the nodule had grown from 1.9 to 2.15 cm in the past month, which did not surprise me at all. He also noted that the stabbing pain was actually coming from a 0.5 cm nodule on the other side of my thyroid, but it looked like a normal cyst and did not need to be biopsied. I had the biopsy one week later on the 30th. I just got results this past Thursday and learned that the larger nodule was benign. It's a pretty exciting day when you hear that word -- benign -- as it relates to your body, especially when you have every single symptom of cancer.

And as it turns out, I am grateful that my original doctor's office botched the human relations part of their job so badly because it meant that I got to see an endocrinologist, which is the type of doctor I should have been referred to as soon as the nodules were discovered in 2008. I had been referred to a surgeon. The logic of the first doctor was that if I had a nodule, I needed surgery if it's cancer. The really frustrating thing is that I was in his office repeatedly over the last few months with back pain that was not helped by muscle relaxers or physical therapy. I do remember him asking me if I had any problems with hair loss or dry skin, and apparently when I said no, he assumed my thyroid was perfectly healthy. Wrong!

The endocrinologist ran a full thyroid panel, and I learned that I have Hashimoto's thyroiditis, which is an autoimmune disease. Basically my immune system is attacking my thyroid. Now, in spite of the constant pain and feeling of being choked, I remind myself that my nodule is a blessing. It's what got me to the endocrinologist in a timely manner so that I could learn about my Hashimoto's. So many people do not get diagnosed until they are clinically hypothyroid and very sick. Although I am not clinically hypothyroid yet -- meaning my thyroid hormone levels are actually decent -- I am having symptoms of thyroid problems, such as unexplained body pain.

Intolerance to cold is another symptom of Hashimoto's, and if someone had asked me a month ago if I had that problem, I would have said no because we keep our house at 65 to 68 degrees, and that feels fine to me. However, whenever I have to do chores outside in this freezing weather, I wind up with muscle spasms in my back that wake me up at night and sometimes keep me awake for hours. After vacationing in Spain and the Canary Islands for two weeks a month ago, and never being awakened by a muscle spasm at night, I knew that the weather was playing a role in my pain at home, but I didn't know why. Now I do.

Unfortunately, the endocrinologist that diagnosed the Hashimoto's said that there was absolutely nothing I could do to help myself. I asked about food sensitivities, and he said quickly, "This is nothing you did. It's all in your genes. You inherited this from your parents." Although I know there is a strong genetic link with thyroid issues, there are definitely things that I can do to help myself, and I've been giving myself a crash course is thyroid health and Hashimoto's over the past two weeks. Many people are under the impression that Hashimoto's is synonymous with hypothyroidism, and although a person will eventually wind up hypothyroid after many years with Hashimoto's because it will eventually destroy the thyroid, it is possible to slow down, stop, or even reverse its progression. It's an autoimmune disease, but it hasn't destroyed my thyroid yet.

I've already changed my diet because many people with Hashimoto's find they do better on a gluten-free diet, and I figure I have nothing to lose by trying it. I've also started taking some supplements that are supposed to help, and I've found a doctor who believes that there are lifestyle changes that can improve the health of those with Hashimoto's. Unfortunately it will be a couple of weeks before I can see him.

What about the nodule? The options for getting rid of a non-cancerous nodule seem to be non-existent. There is hormonal treatment, which various sources describe as experimental, controversial, and successful less than half the time. The endocrinologist asked if I'd like to try it without telling me about any of the controversy about it. He also didn't even tell me how long it took (4-6 months) until I asked. I'm really not willing to try something that has never been proven to work and has been shown to have a nasty list of side effects. I'm already sick enough.

Although a couple of people have told me they've had nodules removed, I've not been able to find much written about that option, and it's never been mentioned to me by a medical professional. I haven't yet canceled my appointment with the surgeon on February 17, so might still go see him and get his opinion on the whole situation.

Because the size of the nodule seems to vary from hour to hour, and the doctor said, "it's just inflammation," I'm convinced there is something that is making it get larger and shrink throughout the day. Unfortunately I'm having a hard time figuring out exactly what it is!

Other than the fact that I have constant pressure on my throat from the nodule, I am actually feeling a little better. The coughing has decreased, and the hoarseness is coming and going, rather than being constant. A couple of weeks ago I sounded like I had bronchitis all the time, and I canceled a sold-out cheese class at a college because I was afraid that the students would not want a class taught by a coughing, raspy instructor even if I was not contagious. I also figured I'd be completely hoarse before the three-hour class was over because I was having a hard time talking all the way through a one-hour Skype meeting.

About three weeks ago, I also started to have problems with severe reflux, which I didn't even recognize initially. I haven't had heartburn in more than 20 years -- not since I was pregnant! I mentioned my symptoms on a thyroid group online, and a woman said that it sounded like GERD. After searching for GERD online, I realized I had every single symptom mentioned by the Mayo Clinic website, some of which overlapped with the symptoms for thyroid cancer, such as a cough and hoarseness. As much as I love wheat -- and remember, I teach bread making classes -- eliminating gluten from my diet may be helping with that, as those symptoms are improving.

To deal with my intolerance to the cold, Mike has been doing all of the outside chores whenever he is home, and I've learned that if I get my body into a tub of hot water after being outside, it decreases the possibility of being awakened by muscle spasms during the night. I told him that if we didn't have goats due to kid, I'd be heading south to stay with our daughter in Dallas for awhile. Depending upon how well I get my condition under control, I might be scheduling much later kiddings next year so that I can leave Illinois if I can't handle the cold weather.

In the meantime, I am stuck here! We had six goats due this weekend, and as I write this, Scarlet and Sadie have already kidded, so I'll be telling you their birth stories in the next few days. And between the time that I started this post and the time that I finished it, Nina gave birth to triplets.


Linda said...

I'm glad to hear that your nodule isn't cancerous! Why can't you have something that is causing so many problems (hoarseness, difficulty swallowing, etc.) removed? I don't get it.

I'm working with a holistic internal medicine doc on my thyroid issues. Although my TSH was still in the "normal" range I had lots of clinic symptoms (extreme fatigue, joint pain, brain fog) and low resting body temps so my doc started me a small dose of Armour Thyroid. Within 3 days the brain fog was gone. A few more tweaks with the Armour and I finally got rid of my joint pain and extreme fatigue.

I hope you find a way through this so you feel well again. Even if "the labs are normal" if you're not feeling well, there must be something that can be done. I feel best when my TSH is close to 1, which is at the low end of "normal." When it's closer to 3 I'm useless -- I can't think clearly, I ache, and I can barely leave my bed.

My doctor also measures my Free T4 and Free T3 to make sure they are within range. What blood tests did the endo run?

Robert Blackburn, Jr. said...

This is a very good article about your thyroid issues. We have had a lot of success with these recommendations. I hope you will see your health improve. Thank you for your service to the homesteading community!

Laura Jaworski said...

Very glad to hear it's not worse than it is, but sorry to hear it's not better than it is.
I hope your kidding season goes well and doesn't wear you down too much.

Janina said...

Hi Deborah! So glad that it isn't cancerous. Now on to the challenge to get you feeling better. Would organic flour help you? The regular flour's gluten level is like 9x what it should be. It's something I've always wondered about, if the organic flour wouldn't already be a significant improvement? I'm happily baking bread from your EcoThrifty book! We all love it. And last week I ordered your other book, Homegrown and Handmade. Thank you for your wonderfully down to earth books.
I wish you all the best with your health! Janina from Ontario

Deborah Niemann said...

Thanks for all of the ideas! I am checking out every suggestion I get!

My TSH has been between 1.2 and 1.7 for the past few months. I've heard others say that having it close to 1 has been ideal for them, but since mine is naturally so close to 1, I'm a little worried about swinging into hyper if I start taking hormones, especially since I'm implementing a lot of lifestyle changes at the moment. Free T3 and free T4 are also close to ideal. TPO antibodies were the only thing out of whack, and even though they're four times the norm, I haven't met anyone yet with it that low. Most people are at several hundred or even into the thousands.

Janina -- I used to totally think that a lot of gluten problems were caused by non-organic wheat, so we've been using nothing but organic wheat for quite a few years. We grow most of our own food, and what we don't grow, we buy organic. I've been gluten free for two weeks now, and I was coughing less, and was less hoarse until yesterday when I came down with the flu for the first time since the 1990s.

Deborah Niemann said...
This comment has been removed by the author.
Sharon-The OKI StampQueen said...

Deborah---Congrats on the "benign". Thoughts and prayers are with you in the rest of the struggles. I KNOW your pain and frustration with doctors-they practice. Thank God--we question, research, ask, read, and anything else inbetween. We basically diagnose ourselves-and then tell them what needs to happen! Like you, one office's nightmare was my god-send answer-I found another practice who took care of me in a timely manner. Hang in there!

Mr. and Mrs. Hoosier Homesteader said...

Thank you for posting this. I have had symptoms of a thyroid issue since I was a teen. They've only gotten worse as I've aged. The only tests I've had run were the simple tests by my primary care physician, and kept being told nothing was wrong. I'm calling my new primary care doctor to see if I can get the full panel done through her office or if I can get a referral to an endocrinologist.

Eliona said...

Dear Deborah,
Benign is Great news. I have Hashimoto too. Was diagnosed over 5 years ago and took 50mg Euthorox (the equivalent of Levothyroxine in US) for about 2 years.
Then after the birth of my son I was told I was hyper.
I stopped taking the hormones on 2010. I have postponed being checked hoping my body will find the normal itself. Feeling good has been the biggest part of my neglect of checking my T4 and T3.
I hope you will be able to fix this problem with the dietary changes. Keep the spirits up.
The worse is over anyway.
All the best


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