[jclark3]

in reply to: 23 and just diagnosed with Graves Disease #1075178

Hi Hopeful23,

I’m sorry to hear of your diagnosis.

Just to echo what Bobbi and Ski are saying, you really need to be consistent with your medication, especially in the first couple of months. PTU (and also Methimazole) don’t just work overnight. You need to consistently take the drug to reduce the levels of thyroid hormones in your circulation and to reach a stable level.

It seems to me that consistency and stability is key with Graves’. I had RAI for my thyroid last month and I’m still all over the place emotionally even though my levels of thyroid hormone are almost within normal range (hooray!). Your body will react to changes and every time you take your meds and then don’t take your meds you’re subjecting your body to constant change.

I also wanted to make a second point (and I’m sure you know this as a Nursing major) which is even though you have been diagnosed with GD, it may not exist in isolation. Just because you have Graves’ it doesn’t mean that you might not also have other things to address. It sounds as though you have had some awful experiences that have led to significant obstacles associated with taking medication. Could you try talk therapy to work through that? I started therapy just before I found out that I had Graves’ (before diagnosis I really thought I was borderline psychotic) and it has really helped me throughout, even when I was fully medicated and balanced on a hormonal level. Just finding out that you have a chronic condition can affect your mental well-being.

Anyway, I hope that I’m not being too intrusive. I just wanted to let you know that therapy has helped me for the most part (although there will always be bad days) and although it’s not going to help your GD directly it may help you with the horrible experiences that you’ve had with medication in the past.

I hope that you can find some balance and start to feel better soon.

Jo

[jclark3]

in reply to: How do you cope with being on the knife edge? #1176947

Hi All,

Thank you all for the kind words and useful information. It’s a great help to know that (unfortunately) other people are going through similar things. I’ll definitely read about AZGravesGuy’s experiences.

I love that Kimberly has a Graves’ T-shirt. I was actually thinking along similar lines after my outburst on Tuesday, maybe something like “Graves’ rage: approach with caution”.

I watched GMA this morning before leaving for work and they showed a snippet of Robin Robert’s interview with Barbara Walters and Robin (that woman has been through so much, and come through it so well) was saying that when things get bad with her she repeats the mantra “left foot, right foot, breathe”. I think I’m going to try that when I feel myself getting hot and bothered. Maybe if I catch it early enough I can stop myself from getting caught up in the spiral of hormones and having an outburst.

I hope that everyone has a good weekend and thanks again.

Jo

[jclark3]

in reply to: Are We Contagious freaks? #1176931

Yeah. I think it’s the “disease” part. People seem to automatically associate disease with contagious.

[jclark3]

in reply to: Wife diagnosed today with Graves. Going to see endocrinologist. #1176749

Hi Tim,

I’m responding to this because I recently had RAI to destroy my thyroid because I plan to try becoming pregnant next year. I’m sharing my experience and understanding of the matter in case it is of use to you.

I was diagnosed with Graves’ in 2010, although my symptoms began some time before that. I took Methimazole for around two years. My symptoms were very well controlled on Methimazole and the dose was reduced throughout that time to a very low dose. Because my thyroid hormone levels were so well controlled on the low dose, my endocrinologist and I decided to stop the treatment to see if my Graves’ was in remission. Unfortunately it wasn’t and I became hyperthyroid again at the end of last year.

I’m getting married in September and would like to start a family. As you have heard Methimazole should not be taken in the first trimester of pregnancy and PTU is often given at this time. In 2010 the FDA issued a warning about liver failure with FTU. I realize that this is very rare but I considered the side effect to be serious enough that I would prefer not to take the drug. Also, I was concerned about titrating the dose so that my thyroid hormones remain in normal range during the switch from Methimazole to PTU and back, as high levels of thyroid hormone during pregnancy can also cause problems with the fetus.

So I decided to take the radioactive iodine. This is certainly not a quick fix. I had the treatment in January and my endocrinologist expects my thyroid hormone levels to drop in March or April. After that, we begin the process of achieving the correct level of thyroid hormone replacement. Because of the time it takes to achieve a stable, normal level of thyroid hormone and because of the radiation exposure we can’t start trying for a baby for a year.

Although I will now be hypothyroid for the rest of my life I decided that hormone replacement was preferable to taking thyroid suppressant drugs and dealing with the unpredictability of a thyroid under attack from autoantibodies. Also, as I understand it, it is generally the case that most people with Graves’ end up hypothyroid anyway as a result of eventual failure of the thyroid.

At the end of the day it will end up being your wife’s decision and she needs to make that decision based on her assessment of the situation. Every case is different. I have a friend who took Methimazole for 18 months and her Graves’ went into remission, and I’m sure that you can find people on this site who took PTU during pregnancy and had no problems and now have beautiful children. Unfortunately there is no easy answer. It’s great that you are so supportive. With time, your support and a good endocrinologist (make sure you have one of those) your wife can come to a decision regarding treatment that feels right to her.

Jo

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