Post image for Me, My Goiter and My Journey with Graves Disease

Me, My Goiter and My Journey with Graves Disease

by Tickled Red on March 24, 2015 · 15 comments

*Warning, this is not a short post, not even remotely! When a jabber jaw has been absent for months, she tends to go over board to make up for it, not to mention refer to herself in the third person*

Me, My Goiter and My Journey with Graves Disease

Well hello there strangers! How have y’all been? I have missed you guys!! Really, I have. Some of you might be wondering where I’ve been, what I’ve been up to and why you have been hearing crickets chirping from my little corner of the interweb. That my friends is quite a tale, one that actually began a while back. 13 years back to be precise. If you have time this morning grab a cup of coffee or tea, get comfortable and I will fill you in on my long journey of misguided indifference, fatigue, foggy days and most recently acceptance.

Some of you may already know that I have Graves Disease, sounds horrid right! It is not as bad as it sounds, honest. However, it has been a bumpy roller coaster ride. Only my guys and couple of close girlfriends know how difficult the last two years have been.

In 2001 I became pregnant with our youngest son Gabriel, during a routine check up with my OBGYN she looked sternly at me as she pressed around the lump in my throat sitting on top of my windpipe and said, “Shari, I am tired of this and I don’t like it.” You see this lump through two pregnancies and multiple visits has haunted her. My mom always tried to make a connection between my goiter and my size, even wondering if I was anemic though I weighed a reasonable 115lbs at 5’4″. No matter how many blood tests I took verifying that I was not anemic the “A” word kept creeping into conversations. My OBGYN  knew that I was diagnosed with a goiter when I was 19, hence her concern. Which I suppose now that I am reflecting back is where the journey truly began. Other than the doctor, asking me if I had prior knowledge of my goiter during my college physical and reassuring me that it would not hold up my attendance nothing else came of it. In fact, that first doctor shrugged off my surprise, filled out my form and sent me along my way. Who was I to question?

Fast forward to 1998 with us as new parents, me working full time and nursing a four month old baby. I was dead on my feet! Most would say that fatigue is a normal side affect of any nursing mom and they would be right. At first, I did not think anything of it but the fatigue became overpowering. It was like nothing I had ever felt before so I scheduled an appointment with a general doctor. I gave him my medical history, even had the forethought to mention the ignored goiter. He examined me and then took x-rays of my throat. My goiter he determined was in fact one with many nodules. His theory was if one of the nodules happened to burst it could cause me to feel hyper or hypo but other than that he concluded I was simply an overwrought nursing mom. His sage advice, cut back on my hours, sleep more.

Three years later and we are back to my pregnancy with Gabriel and my frustrated OBGYN who is booking me an appointment with an endocrinologist.

Slightly nervous yet curious, I went to the scheduled appointment along with my mom, where I had more tests and more blood drawn. At the follow up appointment, the endocrinologist informed me that I had Graves Disease. The name alone sent chills down my spine that day along with his list of unpleasant symptoms. Come to find out the disease received its macabre name after Sir Robert Graves who first described the thyroid disorder, not so scary after all. Graves is one of the most common of all thyroid problems; it is also the leading cause of hyperthyroidism. Hyperthyroidism is a condition in which the thyroid gland produces excessive hormones. This is where this gets interesting; my thyroid is a normal functioning thyroid. Meaning it functions normally not hyper or hypo yet it produces the antibodies for Graves Disease, only me right. Probably not but the irony of that diagnosis has never left me.

So what are the symptoms of Graves? *Blue is what I have experienced*

  • Anxiety and irritability
  • A fine tremor of your hands or fingers
  • Heat sensitivity and an increase in perspiration or warm, moist skin
  • Weight loss, despite normal eating habits
  • Enlargement of your thyroid gland (goiter)
  • Change in menstrual cycles
  • Erectile dysfunction or reduced libido (in that 1998 period)
  • Frequent bowel movements
  • Bulging eyes (Graves’ ophthalmopathy)
  • Thick, red skin usually on the shins or tops of the feet (Graves’ dermopathy)
  • Rapid or irregular heartbeat (palpitations)
Ironically fatigue was not listed as a symptom. However it can be a symptom of the other symptoms in Graves Disease. If your body is in a hyperactive state, your blood pressure is high or you are stressed you can suffer fatigue.

Although anyone can develop Graves’ disease, a number of factors can increase the risk of disease. These risk factors include the following:

  • Family history. Because a family history of Graves’ disease is a known risk factor, there is likely a gene or genes that can make a person more susceptible to the disorder.
  • Gender. Women are much more likely to develop Graves’ disease than are men.
  • Age. Graves’ disease usually develops in people younger than 40.
  • Other autoimmune disorders. People with other disorders of the immune system, such as type 1 diabetes or rheumatoid arthritis, have an increased risk.
  • Emotional or physical stress. Stressful life events or illness may act as a trigger for the onset of Graves’ disease among people who are genetically susceptible.
  • Pregnancy. Pregnancy or recent childbirth may increase the risk of the disorder, particularly among women who are genetically susceptible.
  • Smoking. Cigarette smoking, which can affect the immune system, increases the risk of Graves’ disease. Smokers who have Graves’ disease are also at increased risk of developing Graves’ ophthalmopathy. – Mayo Clinic

Slightly scary yes but after the endocrinologist shared all of the information with me I remained optimistic. Then he informed me that I had to remove my thyroid either by surgery or by radiation. That announcement along with some heavy-handed comments alluding to evidence of symptoms sent the appointment into a downward spiral.

His suggestions/concerns for immediate thyroid removal were…

  • Graves could cause me to go crazy. As I told him, “I don’t have time to go crazy.”
  • Bulging Eyes. My eyes are genetically (non disease related) big, as are my moms, her sisters, her mother, her aunts and her grandfather. As mom tried to explain to him, they are an Italian legacy. He didn’t agree.
  • The location of the goiter on my windpipe and the fact that it could grow down towards my heart. Ok that had my attention, although I had zero pain, discomfort or breathing issues so I wanted verification.

I am not a woman who tolerates the suggestion that there can be only one solution for an issue. Nor did we have the money at the time for an unnecessary surgery. In my opinion, removing a mostly well functioning thyroid and taking inconsistent medications for the duration of my life at 28 was not a sound option. We came to an impasse where he agreed to a new set of x-rays to compare my goiter in size and location to three years prior before any final decisions. Can you guess what the x-rays revealed? If you guessed zero change in three years, you would be right.

So imagine my surprise as I heard, “I am going to set up an appointment for you with the anesthesiologist.”

Me: {Shocked} “Pardon me, why?”

E: ”Because the goiter is pushing on your trachea and you are having difficulty breathing.”

Me: {Stunned} “Really, who said? I didn’t. I am not having any breathing issues, never have. Didn’t you just say that my goiter looks exactly the same as it did three years ago with no changes?”

E: {Aggravated} “Yes.”

Me: {Equally aggravated} “Then why the push for surgery?”

E: {Superior} “Because you have to have it. Its the only way, that or radiation.”

M: {Resolved} “Actually no I don’t. That is simply your opinion.”

And that as they say is that. Me and E parted ways.

You might be shocked at how I handled the situation but after nine years of living with my goiter and three mistaken doctors that I blindly listened to previously, two concerning this issue and one during our first pregnancy, I had come to the conclusion that I was going to follow my gut. My family is not unfamiliar with working with some great nurses and doctors. My grandmother was an amazing nurse, we also spent years at St Jude Hospital during my brothers own journey. I am not Doctor phobic however, somewhere along the way we have forgotten that our doctors work for us but what they have to offer may not be the only path to a healthy solution. Which is what second opinions and options are all about.

I would like to be able to tell you all that I went straight to another endocrinologist for a second opinion but then that would make this a short journey and not a long one. As you can imagine I had my guard up after all of that and truly wanted to focus on delivering our second child without any further distractions. Then life sped up, got in the way and distracted me once more, as we all know it can. The fatigue I experienced during those early nursing months the first time around was not as severe the second time around, which allowed me to live in denial a while longer. If it wasn’t for a minor car wreck three years after Gabriel’s birth I would still be just managing. After the wreck, I was sore and had a strained leg so I went to see our friend and chiropractor Sean.

If you have ever been to a chiropractor you know that you get a work up, x-rays and give your full medical history during your first visit. As Sean took my blood pressure, his expression changed to one of wonder, “Is your blood pressure always so low?” I responded as I usually did to that question, “If it is 80 something over 100 something then yes but that is normal for me as well as most women in my family.” Sean was the first person to tell me that no it actually wasn’t a normal blood pressure. He was also the first person in what I deemed the medical profession to be curious about my goiter and Graves disease rather than disinterested or aggressive. When he asked if he could research both I said, “Sure why not. But I don’t expect much.” Per the norm, I was skeptical and to be honest it was due in part to the fact that I did not consider myself symptomatic therefore I did not feel that I had an issue to resolve. A few visits later Sean proposed I take a few supplements to see if I noticed any difference in how I felt. I debated for a day or two and then decided to try them. The day I began taking the supplements I noticed a massive difference in my energy level! So much so that I called Sean to have him list again exactly what I was consuming. I just knew he had me jazzed up on caffeine and ginseng pills. As he so eloquently explained to me, “You can own a Corvette but if you put kerosene in it, it will not run.” Now that made sense, beyond anything else anyone had said to me.

Why at this time did I opt for supplements over surgery, radiation and prescription meds? Simple, they were less evasive and cost effective in comparison. It has been ten years since Sean started me on supplements, and yes, I have let the ball drop periodically during that time. Personal consistency, as I have come to realize is not my personal strong suit. What can I say…indifference and inadvertently putting me last as most moms are prone to do is how time whisked by.

Turning 40 two years ago brought about a few changes some for the better some for worse. The worst being the heavy, draining fatigue started creeping back along with brain fog. Yes, brain fog is unfortunately real. I thought that I was handling my autoimmune disorder okay. Eating healthy, exercising albeit occasionally, and feeding my soul when I got the chance. Then I began to notice midway through last year that I was off, way off. Evidently turning 40 brought on some hormonal changes that kicked my Graves into gear again. Stress was also a big factor in my decline. I took on more responsibilities while Daniel was traveling more than usual, not the brightest choice but that’s generally how I roll.  If you have been reading TR for a while, you will have noticed that is when the slow decline in chatter began. I tried coming up with good reasons as to why…i.e. the boys activities, work, my schedule but in all honesty, (mostly to myself) the truth was that my disease was changing and I could no longer ignore it. As we, all know it is hard to fix a problem when you will not acknowledge its existence to begin with. To be clear my denial of having Graves was not overtly intentional it was more apathetic, lazy if you like. “Yes I have a problem but not one that requires day to day care, it’s no biggie. I could be worse off.” is pretty much how 2013 and half of 2014 went.

It’s hard to describe my symptoms without them being misinterpreted as something else but I will do my best. I was moody, unmotivated, lethargic, forgetful, and some days despondent. Sounds like depression yes, however I knew deep down with absolute clarity that I was not depressed. I was still happy and in love with everything about my life. Add to the mix thinning hair, less body hair (actually not so bad), brittle nails, night sweats, day sweats, complete crashes (I mean sit down and lights out for 30 minutes to an hour) at the end of my day, or even in the middle of my day and you have a recipe for existing not living. I could not keep up anymore. Have you ever been down with the flu? Take away all the cold symptoms but leave the utterly zapped unplugged feeling. That is what chronic fatigue feels like which is why to some degree you feel for lack of a better word depressed. My word is blue. I knew something had to change and evidently so did my body because it kicked back one day last September. I woke up one morning with limited mobility in my neck. In part to the way that I sat at my computer for hours, partially to all of the “I’m fine lying right here on the sofa why bother.” moments and the lack of exercise in my life. I have said it before and I will say it again…skinny does not equal healthy.

Me, My Goiter and My Journey with Graves Disease 2

Enter Sean…again. For three months I was in his office weekly correcting the kink in my neck which gave him plenty of time to stay on me about taking care of mom and keeping a healthy routine for myself not just for my family. When it comes to my guys I am great at riding them to stay healthy, but horrible at keeping myself on track. It has been six months and a lot has changed. What has changed? First I have embraced the fact that I have an autoimmune disorder, which does require day to day care! Now I take all of my supplements daily, have drastically changed the way that I eat and am taking a weekly Pilates class again after (yikes) 15 years. Sean also discovered that my adrenal gland was in distress so now I am taking supplements to help it as well as my thyroid. This journey took baby steps in the beginning, renewed determination around the New Year and unfortunately the death of a dear friend to harden my resolve to stick with it. This is a lifestyle change, not a trial and there is no going back.

What are the benefits? I can describe them in three little words I AM AWAKE. My energy has returned, my memory is sharp, and most of all the blue tinged brain fog has lifted. I am back to being me again! Just in time for Prom Season #2

You might be wondering have a I seen anyone other than Sean about my autoimmune disorder and the answer is no not yet. Bear with me guys I am still a work in progress when it comes to balancing all my spinning plates and prioritizing me. At least I am not the last spinning plate in the row any longer. As soon as I get through prom season I will be going in for a check up and it will definitely be with a different endocrinologist. For the past few months I have come up with a theory that I am curious to learn more about. Perhaps both the general doc and the endocrinologist were on to something? Since my goiter has many possibly bursting nodules and my thyroid supposedly functions normally what if my thyroid throws off antibodies for both Graves & Hashimoto’s? We will see.

What I have learned over the last six months is that I have always been a good listener when it came to my health just not good at following through with everything that it needed. A trend that seems to run deep with me in other areas as well. Change is in the air my friends! The path may not be easy but I can tell you with the utmost sincerity it is worth it.

Whew! Y’all must be tired of me by now and I have to get back to my to do lists. The purpose of this long winded tale was to catch up with all of you dear hearts as well as to let you all know that you have constantly been in my thoughts even though I was quiet.

More posts will be coming soon, especially about how my food choices have changed along with some fun new recipes. At first they may come in spurts or slowly but until April 18th and prom passes I will be a scatterbrain.

Love & Hugs!!

Shari

PS: The photos are from November 2012 by our sweet friend Ryley Barber (R.A.B Photography) These two photos happen to show off my goiter in case y’all were wondering what it looked like.

 

 

{ 15 comments }

Stephanie March 25, 2015 at 7:49 am

Thanks for sharing this! I’m so glad you’re feeling better, and finding what works for you in your schedule. At least we have bacon <3

Tickled Red March 25, 2015 at 11:59 pm

You are welcome love and thank you so much!! Always bacon, forever bacon…and its fun loving Fargo accented cousin Canadian bacon ;D

Tricia March 25, 2015 at 9:23 am

Shari –
I am so proud of you. I do not have a Graves nor a goiter but I have struggled with chronic pain and depression almost my whole life. I have only ever found one doctor who acknowledged my pain (also a chiropracter) who also suggested a dietary change, one after which I felt immensely better. For a number of reasons I fell off that protocol (for testing reasons, laziness, etc) and, like you, it is time. Time to get back to taking care of me. It’s amazing how difficult that is!

At least in my world it is far easier to take care of other people and ignore myself than it is to consistently choose the right things for myself. Partially, I think, because giving to others produces an immediate and emotional response whereas giving to myself is a slow reward for which I often forget to pause and thank myself.

If that applies to you then know this, I am very proud of you for taking steps in the right direction for yourself – however small or large. Thank you for taking care of you – you’ve been a wonderful light in the places you give yourself online and I am sure the same goes in your friends, family, and social circles. I know how hard it can be to make solid decisions when brain fog and exhaustion creep in so for every decision you’ve made to move yourself in the direction of health I say “YES!”. Now I need to do the same for me. If you ever need a cheerleader I am ready to take up the pom-pons and scream for you from the sidelines (no high kicking though, we wouldn’t want to go *too* far for anyone’s sensibilities ;) ) Good work and great writing my dear!

Tickled Red March 26, 2015 at 12:01 am

Oh Tricia, thank you from the bottom of my heart! You’ll be mine and I’ll be yours, you can do it lady!! xoxo

Adelle Gabrielsonle March 25, 2015 at 3:30 pm

Wow! What a journey! Thanks for opening up and sharing your story. You are courageous and brave. Glad you are feeling healthy again!

Tickled Red March 26, 2015 at 12:02 am

Hi love!! I am so sorry I haven’t popped over to visit you and your sweet family in a while. Hope y’all are well, and thank you so much! It’s been real, glad to be back :D

Barbara | Creative Culinary March 25, 2015 at 6:07 pm

I knew I wasn’t seeing much of you but I blamed it on my own hectic period of issues; dealing more with daughter’s cancer and my dad dying but they were overwhelming and I’ve had periods of just getting by so we were two ships sailing along a path but too far apart to see each other. We need to catchup and I mean that…soon.

I’m glad to hear things are progressing for you; take good care sweetie.

XOXOXOXO

Tickled Red March 26, 2015 at 12:05 am

Oh Barb…I am so sorry to hear about your loss and your daughter’s struggles. I should have been there for you. Yes we were two ships passing, I hope you are doing okay now. We do indeed need to catch up and I promise soon. Thank you so much for checking in on me. xoxoxoxoxo

Sue {munchkin munchies} March 26, 2015 at 12:34 am

Hi Shari, So good to “see” you again! Your post really grabbed my attention because I have Grave’s disease also, among a couple of other things thrown into the mix. I would love to hear all about the supplements, etc…, so will probably email you tomorrow, when I get a chance. Don’t worry about rushing back with a reply. No rush!
Good to see that you are getting things “under control” and feeling more like yourself, and healthier.

Angie | Big Bear's Wife March 27, 2015 at 12:54 pm

I’m so happy that you’re back to feeling you and having more energy! I am also glad that you know someone that was willing to look into it more and research it and give you help instead of blowing it off or demanding surgery. I too have some healthy issues but I mostly have doctors that blow them off or give me a “just workout and eat better”…even when I was “eating clean” they would still say, “well you just need to eat healthy and workout.” Keeping you in my thoughts and sending prayers and good vibes your way!!

Amy March 28, 2015 at 9:50 pm

So happy for you! It sounds like you’re moving in the right direction. Miss you girl! xoxo

Thyrooid geek April 3, 2015 at 9:18 am

Thank you for the interesting post. The correct way of treating Grave’s is to find a method to control the TSI antibodies that are causing the thyroid to go off hand.
The cases of Grave’s with normal T4 levels are quite rare and your eyes were not bulging, so my question is have you been diagnosed correctly??
What was the I-123 percentage uptake over 24 hours?
BTW you should name your goiter z”a Madam’s apple”:))

Melanies923 April 11, 2015 at 11:42 pm

Shari-I was DX with Graves a few years ago. I’m curious about the supplements your Chiro recommended. I also have high T3 and normal T4. I’ve been taking selenium, B12, zinc, and probiotics and have kept my resting heart rate in the 80’s-90’s. I do have fatigue-mostly muscle fatigue. I’m also curious about your sleeping patterns, I can sleep 5-6 hours most nights then have times when I sleep 18-24 hours. I took PTU for 2 years and am allergic to iodine so my Endo wants to do surgery…any info would be greatly appreciated!

Teresa Hughes August 20, 2015 at 12:45 am

Hi Shari-
I was diagnosed with Graves Disease in 2004 after my mother stroked my neck and said “Your dad is really worried about you”. “Okay, why?” was my reply. She then told me she was also concerned because of the goiter I was sportin’. To tell you the truth, I didn’t even notice the lump. I did, however, have other symptoms…rapid heartbeat, sweating constantly, voracious appetite but never eating enough to be sated or gain weight, I should have weighed 200 pounds for all the food I consumed! I had other very undesirable symptoms as well that I won’t disclose but trust me, I was very ill, very weak and rapidly losing weight (I am 5’6″ and got down to 104 pounds), my healthy weight is around 120. Anyway, I was told that if I didn’t get my thyroid removed or destroyed it would turn to cancer. I already had cervical cancer at the age of 25 so I didn’t want to wait and see what would happen. That’s gone now.
I agreed to have the radiation so I had to take a capsule, I131, that is used for cancer treatment. I couldn’t sleep with my hubby, hug my kids or even sit within 3 feet of anybody because I was radioactive. One week of this!! Fast forward to today, I still don’t have any energy, can sleep wherever my eyes close and my memory and cognitive thinking is terrible. I have to take Synthroid, a manufactured thyroid hormone, for the rest of my life. My baby sister had her thyroid surgically removed and my father has been on synthroid for HYPOthyroidism for years! Yes, I believe there is a genetic link.
Thank you for sharing your story and letting me share mine.
Peace and Love, Teresa
p.s. What supplements are you taking? My M.D. says my levels are within range but I think I could use a little boost, naturally would be best but I’ll take anything at this point. =)

Mom to Many March 2, 2016 at 11:18 pm

Thank you, first, for sharing your story.
I’m diving into thyroid-world right now because mine is enlarged. I also first heard about it when I was pregnant with my 8th and they sent me in for tests in which everything came back normal.
Now- almost 3 years later- it’s noticeably large and Ive been battling weight gain, lethargy, dry skin, and a lot of other things thyroid issues can present. Its frusterating because hormonal changes (I am also turning 40 the end of this year) can cause all those symptoms other than my thyroid size, too. But my past test results really confused me because everything else online showed thyroid cancer. UGH.
I haven’t been able to find a good doctor accepting patients until now and I made an apt for next week. Ive already altered my diet as Im desperately trying to lose the weight that has clung onto me this past winter. I only have about 30 in total to lose, but that is lots for me when I feel so exhausted. Ive been taking iron since im anemic as well as vitamin B and Im on a low carb low fat diet with lots of leafy green veggies and high protein meats. Still Im really struggling.

Comments on this entry are closed.

Previous post:

Next post: