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A Graves’ Situation
Dear Thyroid,
I thought you would be different from the others. The other women in my family had warned me. They had trusted their thyroids, too. Their lives together seemed perfect — for a time. With each passing year, that trust grew. Like me, they spent their days in denial of your hurtful ways, even when your insatiable need to control became impossible to ignore or explain away. Still, we wanted to believe that we could work things out — without outside help.
In my mid-forties, I could no longer pretend that we were working well as a team. You made me nervous, upset, cranky and argumentative. You kept me exhausted by day and restless by night. Your need to control me became more than I could stand. I had to get help.
It was time for an intervention. After a careful search, I choose a wise medical interventionist. He listened to me, held my hand, presented options for a better future. My Graves situation had a solution. Ah, dear thyroid, you were no match for my hero, Tapazole. My body rallied behind him and the battle soon turned in my favor. He had weapons that I did not possess. I was able to rest again. I was happy again.
Dear Thyroid, our relationship is worth fighting for, yet I hope I don’t have to do battle with you again. We have fought this battle twice. You are on probation. You have been warned. If the choice is between you and me, I choose me!
Linda F.
Tags: A Graves Situation written by Linda F, Dear Thyroid Letters, Graves Communit, graves' disease, Graves' support, mid-40s hyperthyroidism diagnosis, misdiagnoses and thyroid disease, women with graves disease
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23 Responses to “A Graves’ Situation”
Leave a Reply to Bee
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I’m glad Tapazole worked for you. It almost killed me. First it was the PTU and then the Tapazole. We really need to come up with a safer hyperthyroid med then those two. They suck!
Linda, thank you so much for sharing your story with us!
If the choice is between you and me, I choose me!
So beautifully said, Linda! It’s like Nicole discussed in her column last week (http://dearthyroid.org/fat-thigh-roid-woes-in-a-fat-neck-slim-lies/)–when it comes to our health, it’s okay to be selfish! We SHOULD be selfish. I’m so glad that you are putting yourself first.
Beautiful letter.
xoxo,
Joanna
Ciners;
Would you please tell me more about what happened with you on Tapezole? Because it almost killed me, too. I became thyroid psychotic and thyrotoxic. What happened to you, if you don’t mind me asking.
I love that Tapezole has worked so beautiful for Linda. I’d be curious to know how many other patients have had success on this medication. Additionally, I’m very thrilled to see a thyroid success story!
xo
Joanna, such a great point! Being selfish regarding our health is paramount to maintaining a pulse.
Great reference to Nicole’s article last week.
xo
I was 16 when diagnosed, and am so thankful to my mom (who died just a few years later) that she fought vehemently against RAI for me. While I’ve still struggled over the years I just don’t feel RAI is the right path for me.
Tapezole saved me. But I’m desperate to hear more about how it almost killed other people? More proof that a one-size-fits-all solution does not exist!
Ni Nicholle;
I am so sorry about the loss of your mother. I am grateful that she fought for you when you couldn’t fight for yourself.
I absolutely hear you regarding struggling over the RAI/Thyroidectomy/Tapezole.
I agree, we aren’t a one-size fits all, not in the slightest.
For whatever reason, when I was on tapezole, my symptoms and disease escalated times 10. I had an adverse reaction to the medication and got even sicker. Within a year, I became thyroid psychotic and thyrotoxic.
Like you, I’d love to know more about other people’s stories re: adverse reactions to Tapezole.
So glad that you’re doing okay on Tapezole, that’s wonderful news.
xo
The doctors originally put me on PTU, but it made me start to feel wierd, so I took myself off of it. When I told the doctor, he got angry saying that I should have continued, so I stopped him too.
Two years past before I went back. This time they tried tapazole and within a week I started feeling worse then before. I stopped taking it and again stopped going to the endo.
Again, two years past and by this time my levels were so high that the doctor told me he didn’t know how I was functioning. He put me back on tapazole saying that it was the milder of the two medicines, and that it was impairative that I take it for a month.
At the end of the third week my body shut down. I couldn’t concentrate, I couldn’t focus. I had trouble getting out of bed in the morning and I just wanted to sleep 24//7. And talk about my emotions! They were all over the place.
One morning I woke up itching all over and by noon I had red welts all over my body. My boyfriend told me I had to leave and go to the er, so I did, but they released me within two hours. I was back the next day though. By then my heart rate had gone up and I started running a temp. Sure signs of thyroid storm.
Come to find out I was allergice to the tapazole. Not only did it shut down my body, but it sent me into thyroid storm. Thankfully I was able to catch it before it did any damage. Still pretty scary though. The doctors told me I’d never walk out of the hospital and they were just keeping me comfortable. I showed them! 🙂
It’s interesting – when I went on tapazole I could tell my specialist was a bit….nervous…about it. She wanted my blood levels checked almost daily, and she did mention that it had the highest rate of side effects. She seemed relieved and almost a little surprised when within 10 days I needed to lower the dosage because my T4 levels had come down so quickly.
But I did feel some of the less-serious side effects – headaches, dry mouth.
c1ners: were the red welts hives?? Each of my 2 crazy almost-thyroid-storm episodes have been accompanied by insane hives (direct result of stress triggering my hyperT). Good for you for listing to your body and ditching the doctor. That’s my biggest difficulty with doctors – they don’t realize how self-aware I am with my body and my symptoms. I know my body better than you do!
Ciners;
Thank you so much for sharing more of what happened to you. What is PTU?
I’m so sorry that you had a thyroid storm. I had quite a few on Tapezole, too. The symptoms of welts you describe, I had those. Now, I wonder if I was allergic to it.
Girl, I must tell you, your advocacy for yourself, is AWESOME. I love your determination, it’s so inspiring.
How are you doing and feeling now?
xo
Nicholle – So glad you’re doing well on Tapezole now.
My thyroid storms were, now that Ciners mentioned it, followed the hives, crazy red hives all over my arms, legs and torso; IT WAS INSANE.
You’ve had two, and in what time frame?
xo
Dearthyroid Katie- I’m assuming you’re the DTer commenting on tapezole- not to make light of the subject but i leep getting this vision of you in a hyper psychotic state and think i now know the origin of the expression:”Katie, bar the door.” I bet you were a mess and so glad you’re better for yourself and the rest of us…If i got to pick my thyroid disorder I’d pick hypOt over hypERt any day-you ppl just seem to struggle so much-and i’m not trying to make light of hypot’s out there-maybe it’s just that we can handle what we know and i can assure you, I definitely do not want to experience any hypert-being close with too low TSH #s was enough for me—Linda, you’re a fighter …I like fighters… keep it up…way to go
Hi Linda, Love your attitude, so inspiring for all of us. I learn so much here and what I take most from it is that we are fighters. You are on probation, lol, that is the best. To Bee, I agree that all thyroid issues suck but being hyper was the worst for me and everyone around me. I did not know I was hyper for a bit, I just thought I was totally going crazy. This community helped me to realize that I needed to seek help and not take no for an answer. DT rocks, as does everyone here! Good luck to each of us 🙂
Linda, what a beautiful letter. I’m happy Tapazole is working for you, and I hope your awesome doc is monitoring you carefully while taking it.
DT Community – My column next week will deal with PTU and Tapazole, because I turned out to be allergic to both and had severe reactions. We definitely need to educate ourselves when doctors seem so willing to hand over a prescription, but not talk about side effects.
Beelish – Honey, you don’t ever make me feel marginalized in the slightest, ever.
I hate to compare diseases, speaking for myself. I think each situation sucks. I wish none of us had membership in the jacked thyroid club.
I got your email, PS: I will email you back re: TED.
Love your support for Linda!
xo
DAT – Really glad you mentioned feeling like you were just crazy and didn’t realize you were hyper. At the onset of my disease, I went from being even keeled to a slightly paranoid, kinda rage-eee, moody bitch. I couldn’t control it.
If I’m not mistaken, hypo patients are susceptible to severe depression, and other mental issues that are pretty bad, too.
You rock. Everyone rocks. Love this joint.
PS: really great point about everyone’s fighting spirit. I see it. I feel it. Every time I log on, I read someone’s letter or column, or comment, and I feel a bit stronger.
xo
Nicole – I am so glad you’re writing about that because I have no idea what PTU is. I’ve never heard of it.
Great support for Linda.
xo
Dear Ciners,
Thank you for your comments. I’m sorry that it has taken so long to respond.
I wish none of us had membership in this “club”. Did you know that the very same Tapazole is given to cats with hyperthyrodism?
You had quite a journey and suffered so much. There has to be more research! If sharing my story helps, I am happy that I did. Feel free to ask me anything.
I wish you good health,
Linda
Dear Joanna,
Thank you for taking the time to say such nice things about my letter.
As women, we often put everyone else on our “to do” list and we are on the bottom. We make excuses for how we feel and we blame ourselves for situations beyond our control. I blamed “nerves” about my new job at first. Had I not come from a family of hyperthyroidism, I may have suffered longer. Luckily, my doctor had always done yearly testing of my levels. I told HIM that I suspected this illness and he tested me.
We are lucky to live in a time of technology that lets us connect and share and learn from each other.
Please feel free to ask me about my journey with Graves’.
Take care of yourself,
Linda
Dear Nicholle,
Yes, we are lucky that Tapazole worked for us. I’m sorry about the loss of your mother.
We need more choices of treatment. I had no idea that many others had such bad reactions to Tapazole. I had a headache for the first few days, but only a very slight one. By the second week, I was beginning to feel better. I guess I was very lucky.
Thanks again for reading my letter,
Linda
Dear Bee,
Thanks for the encouraging words. I’m normally not a fighter, but this was a war and I wanted to win!
We need all the information we can get!
Take care of yourself,
Linda
Dear DAT,
Thanks for taking the time to post a comment.
I agree that it was probably just as hard for those around me in the beginning. My blood tests were done in late Nov., but I didn’t get to see a specialist and start Tapazole until late January. My husband said he told our 2 kids (teenagers) not to argue with me about anything. Funny now, not then!
Keep fighting!
Linda
Dear Nicole,
I look forward to learning as much as I can about thyroid issues and treatment options.
Thank you for taking the time to post a comment. I am glad so many people found it helpful.
Take care,
Linda
Glad I stopped by to read this, to know that we are not alone. I am allergic to Tapazole/methimazole. I hadn’t had time for a physical in 3 years which was not like me, had been busy dealing with my younger sisters illness and helping her with her daughter. So when I finally went in 2007 my general doctor noticed I couldn’t sit still and not only had labs came back for hyperthyroid but upon further testing Graves’. I don’t remember how long I took it for before the allergic reaction, but I know it wasn’t long.(Allergies to sulfur run in my family, am unsure if it is in there) I broke out in itchy hives (never having an allergic reaction in my life before)welts from head to toe. I had no medical insurance and did not qualify for medi-cal because I don’t have children and income was a little to high. SO I was forced to go to General Hospital, the closest to me. This was maybe my 2nd or 3rd time waiting there. You have to wait at least 72 hours before being seen, unless you are visibly dying. I waited along with the homeless, destitute, juvenile criminals that are handcuffed in their jumpsuit with an officer nearby. When I was finally put in small room with no ventilation that I could barely breath from, all they did was prescribe me some allergy pills ( I can’t remember what they were) even though my fingers were swollen like sausages. The pills did not work, and by the next day my face was huge, lips bigger than Mick Jagger and face deformed. (I went to my primary doctor every day, like a freak show so that they could moniter me, it was great scaring people with the face haha.) So the very next day after being released from the E.R. I went back and waited 6 hours again @ General Hospital. they never saw me, instead a nurse that remembered me from the day before angrily accused me of being there again. WTF? as if I preferred to hang out in a waiting room with homeless people versus being home. So I went home soon after and called an ambulance, (although could not afford one) because I knew that they see you right away when brought in by an ambulance. I asked to be taken to a different hospital and all I needed was an Epi-pen. Then when I returned to my general dr. to keep track of how I was doing. I was questioned why I went to the better hospital, as if I only deserved to be seen at the lowly General Hospital. (Not dissing the hospital. When you don’t have insurance things are just different) So after allergic reaction (lovely itching)I just thought i would take a new drug to make it go away. But was told by endo, I had to et it run it’s course until it got bad enough to need RAI. It only took2 months to get to that point. I feel that RAI saved my life. I could walk again, breath again and so much more. Although now my time is more filled with dealing with the management of TED (I care more about it messing up vision than about appearance)than hypothyroid, I do not regret RAI. I was truly dying before it. Hang in there all of my Thyrellas and Thyfellas and thank you for sharing 🙂