[Lina1]

in reply to: Grave’s Disease #1169449

Diane,

I took a lot of comfort reading your post from the other day…funny as that may sound. I am a cancer survivor as well. I had Stage 1/II Hodgkins Lymphoma 4 years ago. A quick question for you…Did your radiation extend up into your neck? Mine did, and I had found one scientific paper/research written about a small number of patients that end up getting Graves Disease possibly as a long term side effect of that radiation. Keep hanging in there. I also have many of the same symptoms that you’re feeling and work a very demanding job. I’m starting to get used to saying the word "no" more at work, taking on less, and making time for myself and my recovery. We’ve both worked hard to get healthy once before, and can surely do it again. Stay strong and make time for yourself.

Lina

[Lina1]

in reply to: Chronic muscle pain and weakness #1061831

Hi there. I just wanted to quick say that I have also experience painful muscles with GD. This was before I began PTU as my treatment. For me, it effected my shoulders. It was very painful at all times of day, but especially when I attempted to use my shoulders/neck more than normal. Approximately 1 or 2 months after starting PTU my 1+ years of pain were basically over. I strongly feel that there was a connection between GD and my muscle pain, but it’s always a good idea to get it checked out. It’s smart to make sure another ailment is not being overlooked or masked by GD. Just wanted to let you know you’re not the only one! ” title=”Very Happy” />
Lina

[Lina1]

in reply to: HELP!!! #1061330

Krystal,

I live in Oshkosh, which is not exactly super close, but good in a pinch. I wonder if a moderator could put us in touch with each other without us having to put our personal information out on the web? I also have Graves Disease (diagnosed Aug. 2010). It would certainly be nice to talk to someone close to home!

Lina

[Lina1]

in reply to: Have Graves disease not sure what to do… #1169492

Lisa,

I’m taking PTU right now and it has done fairly well for me. I have not suffered any major side effects and I have been taking it for a year. I started at a higher dose and am now down to a lower dosage. I’m actually quite happy that I gave PTU a try, being a young woman who would like to get pregnant once my thyroid is under control. In my case, PTU worked very quickly. My hyperthyroidism was under control very soon after starting the PTU even though I started out extremely hyper. The side effects that they list are can be serious, but there are a few things that you can do to help catch any potential problems before they get bad. Insist on having your blood work done regularly for liver function and white blood cells. Also, really "listen" to your body. If you’re experiencing any symptoms of side effects call your doctor right away and get their opinion. Everyone is different and this is just my experience, but at least you’re hearing from a few people that are taking PTU and doing okay!
-Lina

[Lina1]

in reply to: Hyper to Hypo…and now what? #1062050

Helen,

I’m sort of in the same boat as you, only I’ve been taking PTU. My doctor and I keep switching between 1/2 a pill once a day for a month or 1/2 a pill twice a day for a month. Each time we do this, at the end of the month I’m either slightly hyper or slightly hypo…but seemingly never within normal range. Weird, right? Seems like my Graves just wants to be stubborn and difficult. Now we have a plan to take 1/2 a pill twice a day, then the next day just once. Twice, then once, alternating days. I’m hoping that this will help keep me in the normal range next time I have a blood test…although based on symptoms, I bet I’ll test hyper again! Sometimes…you’ve just got to laugh. At least you know you’re not alone with this issue. I’m looking into trying other things to go with the medicine to help my body heal itself. I’ve heard some good things about acupuncture or yoga/meditation classes to reduce stress. Perhaps I’ll try and add that into my regiment to give myself a better chance.

[Lina1]

in reply to: New here and find site helpful. But still confused on GD. #1169527

Hi! Sorry to hear about your daughter’s struggle. I think that the school will definitely work with you on sick days. I’m a teacher at a public high school and there are (unfortunately) many kids who face ongoing health issues all the time that require them to exceed their maximum sick days out of school. (Recurring migraine headaches, serious illness, injuries, pregnancies, etc.) Often doctors will write open-ended sick notes stating that the student may need to miss many days throughout the school year due to a single factor. I recommend making an appointment with the principal and having a nice talk with him or her about your daughters illness and need for frequent absences. (Perhaps the principal is unaware of the serious reason for having so many absences in the past?) Also, if the principal knows that you will do your best to help your daughter catch up in classes, it makes a very good impression, and they’re more likely to work with you on a plan. I hope this helps! Hope she feels better soon!

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