[Jeter2]

#1060773

My girlfriend was diagnosed with Graves last year. The diagnosis (i’m sure you all are familiar with) has been rough, jumping from dr to dr, blood test after blood test for months and months to figure out finally that she has Graves. She has been prescribed meds but recently has stopped taking them because she frustrated at the lengthy process and feels meds are not helping and feels the doctors are not helping her. (I love her dr and think he is helping alot) I can’t make her take her meds, but now i’m scared and don’t know what to do. I have started noticing changes in her that I believe are from coming off the meds but that alone isnt making her take them. I feel like she has given up. Any advice / support will help. Thanks.

[Liz1967]

#1184686

That is rough. It is hard to think straight if your thyroid hormones are out of whack. You might suggest she consult a thyroid surgeon to explore thyroidectomy, which is a shorter process to feeling normal than the anti thyroid drugs. It does remain her decision, all you can do is make suggestions. Remaining hyperthyroid can be dangerous for her. If she doesnt like her doctors, encourage her to find a different endocrinologist or a surgeon. There are options with this disease and people do get back to normal. I certainly did. It is always hard to get an unexpected diagnosis, but she certainly isnt alone. You can support her, but she has to choose her course and the medical professionals she feels comfortable with. Good luck. This forum is a good source of legitimate science based information so you have come to a good place for help.

[Jeter2]

#1184687

Thank you liz1967. Ive been her number one support. i go to all her appointments and have been doing alot of reading on the disease. Her dr said he doesnt want to do surgery on her yet because he believes we can control it with the meds. There has been positive change in the blood work but now she has just given up. Its hard for me to support that decision and I dont want to nag her. I’m just scared now.

[snelsen]

#1184688

I would prefer to have her read this. I have been hyperthyroid, and worked with, and cared for (in the hospital) folks who decided to stop their meds. It is not pretty.
Every reason for you to be scared, and she should be scared, too. The ramifications of being hyPERthyroid range from lifelong heart problems, deteriorating bones, i.e., much increased incidence of osteoporosis, loss of weight to the point of having it be a catastrophic situation for her. and…it happens, if she does not believe it, have her read about this…thyroid storm, which an individual has a vary good chance of dying, if the do not seek emergent help from docs who understand what is going on with her. Also rapid pulse rate, which is extremely harmful. Tremors. Oh yes, anxiety, sometimes psychotic episodes.
Liz had good advice. I hope she reads that post, too. You have every reason to be scared. It is like living with or being with a crazy person. Which most of us were, when we were hyper.
Stopping the meds is just plain harmful, really harmful for her.

[Jeter2]

#1184689

Thank you snelsen. She already has all those; rapid heart rate, tremors and shakyness, anxiety, eye problems and everything that comes with Hyper. She is aware of Thyroid Storms and knows someone who has been through it and survived. Yet, it still doesnt make her take her meds. It truly breaks my heart. I’m a mess about it. Anyone on here ever stopped their meds? Maybe you can help me understand why?

[Liz1967]

#1184690

Anti thyroid meds make a lot of people feel crummy, at least until they reach remission and that could be years. My endocrinologist assured me she could manage me on 5 mg of methimazole. She was wrong. I felt bad. I saw a surgeon on my own, she did not recommend it. Surgeon told me eye disease would burn out a year after TT and Synthroid easier to dose to feel good. He was right, at least in my case, and I immediately felt sooo much better. So if she is aware of the risks and the drug makes her feel bad enough to risk rampant hyperthyroid, maybe the meds are not for her. She could have thyroidectomy or radiation, although if she has eye symptoms, RAI not a good choice. You may love her doctor but she apparently does not, so to get her in a less dangerous state, help her explore other options besides staying with a plan and a doctor she is resisting. Maybe if she sees a quicker end to feeling bad she will be able to resume the drugs long enough to get her in shape for a definitive end to the hyperthyroidism.

[emmtee]

#1184691

I’m sorry that your girlfriend is so deep inside of the tunnel that she can’t see the light. In a way I can relate because it took me a full year to find the right dose of methimazole, and I remember how frustrated and anxious I felt early in my diagnosis when I was very hyperthyroid. In another way I can’t relate at all because Graves’ isn’t even close to the worst thing that my family and I have been through.

Your girlfriend still has a glass that’s nearly half full, and it sounds like she’s just stepping away from the table. Maybe it would help her to see people who are worse off so she can get a better perspective. A half-full glass is better than an empty one. I feel better when I focus on all I have than on all I lack.

Your girlfriend’s doctor may prefer that she stay on the meds, but if she’s absolutely refusing, maybe he would consider referring her to a surgeon. The catch 22 is that she should be euthyroid (accomplished using anti-thyroid medication) before they will even do a thyroidectomy. Still, the promise of surgery may be enough of an incentive for her to continue taking her meds. I was on methimazole for four years and had a thyroidectomy (due to a nodule) last fall. I felt okay on the methimazole, but definitely better since having my thyroid removed.

One last bit of advice: You obviously love your girlfriend, but if she insists on going down this self-destructive path, don’t let her drag you along with her. You’ve been taking good care of her, but you have to take care of yourself first.

[snelsen]

#1184692

What wonderful people on this forum! And this thread.
Great thoughts Liz and emmtee.
As emmtee, mentioned, the meds might most likely will be necessary to prepare her for surgery-and the surgery might seem attractive to her, for it is definitive. I know that is exactly the way I felt, for sure.

This self-care thing is always hard. But critical for you to do this for yourself and your relationship…and your life! Do keep writing, we will help as much as we can!
Shirley

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