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As for me, I was diagnosed with Graves disease when I was 25 (I'm 30 now). I had almost no noticeable symptoms (at the time) except that I felt a lump on my throat around my thyroid. At the time I thought maybe I just had a swollen lymph node. After making an appointment with my GP, he sent me to an endocrinologist. I had the uptake and scan as well as blood work before I got the final diagnosis.

The endo really pushed the radioactive ablation but I worked in a nuclear medicine department and my mother is a NM tech so I had both sides of the argument (both for and against). I opted to try medicine first and if that did not work I would go forward with the ablation.

I took methimazole for approximately 18 months before they weaned me off. I think it actually took about 10 months to get into a "normal" range but they prefer to keep you on for at least 18 months per my endo. At the beginning I was also on beta blockers for an extremely high heart rate.

My symptoms (though I didn't notice them at the beginning) were high heart rate, trembling fingers, and of course the lump, which turned out to be my swollen thyroid. All my symptoms have gone away except for the swollen thyroid which did go down but is still noticeable when you feel it.

I've been off the meds for about 2.5-3 years and so far it has stayed in remission. I don't have a LO yet but I did get pregnant in July of 2014. They informed me then that they would monitor me more closely since the antibodies do cross into the placenta. Unfortunately, that pregnancy ended up being a partial molar pregnancy but had nothing to do with the Graves disease. We are currently TTC now.

Hopefully if anyone has any questions I can help answer them! There's a good amount of research on the internet but it's always nice to talk with other people who've dealt with it!

@MrsKoala: I was very nervous when we found out I was pregnant because my first endo really had me thinking the antibodies are the worst thing ever and that there would be so many problems. I switched to a new endo and she said my antibodies were on the low end and that they don't worry as much with lower levels. That made me feel a little better about it. I didn't get far enough to have detailed monitoring but my OB says next time I will be monitored closely.

@MrsHoneyC: Wow how stressful that must have been. I'm so sorry breastfeeding wasn't as you planned. It's good that you've found a Dr who understands and can be helpful. Are you TTC now or waiting?

The molar pregnancy has been very difficult but we are coming through the dark part and hopefully getting to the light. I was "lucky" in that I had the "better" of the two. I'm super nervous about it happening again but I try to take one day at a time.

ETA: the pictures on your blog post are absolutely adorable!

@MrsHoneyC: Haha no worries! I understand what you are feeling. While our situations are different, I do understand feeling hesitant. DH and I were so excited when we were trying to get pregnant early last year and we were ecstatic when we got our BFP up until we found out about the loss at 12 weeks. (We saw the baby with a heartbeat at 8 weeks).

Now that we are trying again it's almost like we are little detached from the emotional/exciting part of TTC. We've even said that once we get our next BFP we don't know how excited we'll feel until we get past the 12 week mark and know that its not another molar. It's sad that sometimes life makes you jaded about things that should be happy/exciting times.

I also don't post a lot on HB, mostly because I don't yet have a LO. But I found the ladies in the miscarriage board to be the most amazing support. I'm not sure how I would have gotten through without them!

What an amazing story!! Thank you for sharing!

@MrsHoneyC: Ok so I just read your story. First I want to say your an amazing woman.
Second your not alone. This is where the bond with other Graves disease survivors becomes so strong. Because no one no matter what they say can truly understand what you've gone through unless they've been there too.
In my other post I wrote about how I breastfed my daughter for the first year. It was the hardest thing I've ever done in my entire life. Have you heard of postpartum thyroiditis? To sum it up it often happens when the body produces anti-thyroid antibodies against thyroid hormone. Most people don't even know that this is real. I suffered bad after I gave birth. I know what you mean about the depression. To make matters worse my family left the hospital while I was delivering my daughter and didn't tell anyone. When the nurse went out to get them after she was born and had to come back into my room and say " i'm so sorry, there isn't anyone here for you". My heart broke. I struggled with it for weeks. I would bawl my eyes out because all i wanted was to show my beautiful daughter to my family and like always in my time of need they abandoned me. Now a days they are no longer a part of my life. I had to do what needed to be done to mentally heal. My daughter and I struggled with breastfeeding. She was tongue and lip tied. we didn't find out until she was 4 months old. she too lost 20% of her birth weight. After her lazer treatment to fix it she had to learn to latch and nurse all over again. Just in time for me to have a fluctuation in hormones and the PTU was affecting my supply so bad. She wasn't gaining like she was supposto. I too went on donperidone and blessed thistle and frenugreek. I pumped a good chunk of that first year. By the time she was 6 months she started solids and my supply took another dive. She nursed less and less until we got to the one year mark.
She's as healthy as a horse according to her ped. But even now at 16 months she only weighs in at 20lbs. Mind you dad and I are small people both 5'0 and 5'5. So she isn't going to be a large girl anyways. There are many a moment I look back on and wished I handled it better.......but I cannot take it back. I'm just so grateful I survived it.

@bunnylove08: Congrats on being cancer free for so long!
No it's not in your head. I too was told to take synthroid instead of any generic brands.

I've been frantically spending every free moment of the last two years researching anything I could find about this disease. It's truly fascinating and yet so not fully understood.
I read a book by another fellow graves disease sufferer named Carol Gray. She had RAI and became hypo. The books called "wow your mom really is crazy" It was right on the target with all the same things I was going through. I am always fluctuating with my moods. Highs and lows. This is just something we will always have to deal with I think no matter what.

@MamaPhoenix: like so many experiences in life no one can truly understand until they have gone through something similar themselves. I think I told you I had read in my thyroid book that women who actually had thyroid disorders were diagnosed with hysteria years and years ago - when your thyroid is crazy it will make you feel crazy.

My mom went undiagnosed for years and years and thought she was slowly losing her mind. She had heart palpitations, extreme exhaustion and moodiness, would experience extremes in body temperature and felt like she was having panic/anxiety attacks - she was just so uncomfortable and unhappy. They though she was going through early menopause and dismissed her symptoms. Finally they diagnosed her with Graves' disease and she had thyroid ablation. It was life changing. Her docs said it's extremely heredity among women in the family and encouraged her to have me tested.

I was tested when I was in law school and thought I was just experiencing the stress of that. I had super high heart rate (resting was like in the 120s), exhaustion at the slightest amount of exertion (I couldn't work out or my body would just shake), heart palpitations, extreme heat (could not wear long sleeve shirts even in winter), insomnia, and I definitely felt ragey and like I was going crazy...and I was just super emotional/unstable. But I thought it was just stress.

Once I got tested and treated (beta blockers and PTU at first)bI felt like my life completely changed. The only way I can explain it to someone is when your eyes are getting bad and you try on glasses for the first time - you never imagined you could see so clearly and suddenly the world is completely different. That's what it felt like when I finally got on thyroid meds.

After awhile my doc saw that my thyroid levels weren't stabilizing on just meds so I did thyroid ablation via radioactive iodine. My thyroid was super resistant and I had to undergo another treatment. It worked and I was on 88mcg of synthroid for over 10 years. Just last year it was increased to 100mcg. I definitely felt off (super tired and just could not get warm even in the summer). Once the dosage changed I adjusted quickly and felt like myself again. I'm so glad I know this so I can have my daughter tested early so she can be treated early if needed. My doc has told me that thyroid disorders are no joke and patients have lost jobs and marriages have ended bc when untreated you feel like you're going crazy.

@sandy: Oh sandy you couldn't have said it better! The glasses thing was so right on. I have been told I was crazy since I was 9. I sobbed so much at 13 when they locked me into a room at the hospital on the psyc ward for 12 days. I was alone and scared. I started to believe over the years that I was loosing it. I was starting to believe those that beat into my head over and over again that I was Crazy. When they finally diagnosed me I cried so so much. It was a happy cry though. Someone finally told me There really was something happening and I wasn't crazy.
I haven't posted much here on Hellobee in the last couple months since the surgery. I was doing amazingly good right after. I remember how at peace I felt and calm like I've never known. My Heart had a normal Beat. Than what was left of my natural thyroid hormone started to deplete and I felt it start to creep back in. The sadness, the depression. It's like when atreu loses artek in the swamp of sadness in the never ending story. It consumes you until you are no more yourself but an empty shell.
That's when I got mad and started dictating to my endo. I feel great right now and I'm even loosing weight again. But I'm nervous because it could only be temporary.

@MamaPhoenix: i really really hope your docs are able to get your thyroid hormones under control. And I really hope it never becomes a major issue for you in trying to have more children

My thyroid issues have nothing to do with why Ava died thank goodness. My husband and I both carry a recessive gene for polycystic kidney disease. We had no idea bc there is no kidney disease in our family as far as we know. And the craziest thing is I'm Asian and he's white so we're genetically diverse as you can get...so the doctors were just shocked. So every time we try to have a baby there is a 25% chance that the baby will get the recessive gene from each of us (just like the recessive gene for blue eyes) and have polycystic kidney disease. And once the baby has it there is a 30% chance that the baby will not survive more than a few days. We had 13 hours. Just like so much in life, we can never take our health for granted bc not everyone is so fortunate.