Viewing 8 posts - 1 through 8 (of 8 total)
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  • Anonymous
    Participant
    October 17, 2003 at 5:02 pm
    Post count: 93172
    #1025496

    I was just like you – almost 2 years ago. I had been heat-intolerant, sweating (and I was cold-natured before), heart racing, losing hair, nails brittle, very irritable – even outbursts at people when it was not justified, very tired at times, and I also have the eye problems (thyroid eye disease), which everyone does not get with Graves.

    Now, that you have found this site, I would suggest you read everything on the Home Page – push all the buttons on top and on the left side – a wealth of info!!! And, I really liked the book, The Thyroid Solution, as well as Graves in our own words. I had to read, read, research, research for the first year!

    And, I wrote a daily diary of my symptoms, treatments, kept copies of my bloodwork results (docs are obligated to provide you with this if you ask) – had blood tested about every 6 weeks at first. I was put on anti-thyroid drug first (what we say are ATDs); but, it did not agree with me. Then, I opted for radioactive iodine (RAI) pill, to stop the thyroid from over-producing. But, some people need to have the thyroid taken out. Then, we are given synthetic thyroid hormone to keep balanced the rest of our life.

    The RAI has been around for over 60 years – not a new treatment, in case you are wondering. And, it is totally absorbed by the thyroid gland.

    Since you have questions about pregnancy, you can do a search on this site using the word “pregnancy” to see past posts on this BB.
    The more you are educated, the more you are encouraged, the more empowered you will become! Welcome to NGDF BB. Joy in NoGA mtns.

    Anonymous
    Participant
    October 18, 2003 at 12:21 pm
    Post count: 93172
    #1091599

    Today is the first day I’ve visited this site. I really appreciate the information available. I’ve been having symptoms for about 6 months – muscle pain and weakness, tremors, sleep problems, heat sensitivity, pounding heart, and recently swollen eyes. I have been on a low dosage (25mcg)of Levoxyl since January for hypo then, two weeks ago, my doctor tested my thyroid and found it extremely high (I don’t know exactly how high – I haven’t gotten a copy of my bloodwork yet). I haven’t been to the Endocrinologist yet, but that is in the works. My GP put me on Methimazole and Athenol – I’ve been taking them for a week and a half. I’ve been doing as much reading as I can, but I don’t know what to expect. It is my guess that it was brought on by stress – my husband is bipolar and the last year has been a difficult one. I know I’m having a little trouble with denial, but what are the odds that it can be brought under control without the RAI? The eye problems and the possible weight gain (I’ve gained 5 pounds in the last 10 days)concern me because they are the symptoms that everyone else sees. I seem to cry a lot lately and haven’t had a period since August. Is there anything that will make the swelling around my eyes go down?

    Anonymous
    Participant
    October 19, 2003 at 8:36 am
    Post count: 93172
    #1091600

    The meds, like methimazole/Tapazole, typically work quite well to provide a chemical block to the production of thyroid hormone. What they do NOT do is get rid of the disease-causing agent, so the most likely scenario is that you would need to take them forever — or on and off, forever. If you can tolerate the meds well, your doctor might allow you to stay on them. There are, however, reasons why our doctors often recommend to us that we stop the meds and remove the thyroids (either through RAI or surgery). Since you are new, it would be well worth your while to get one of the books reccomended on the main NGDF website, so that you can educate yourself about the reasons behind the various treatment options.

    As for the swelling around the eyes: you can elevate the head of your bed by putting blocks under the supports. This can help alleviate eye swelling. Putting frozen peas into small baggies and using them as “ice packs” can help. The smallness of the peas allows the bag to mold better to the contours of your eyes. And by putting them in the baggies, you can reuse the “ice pack” without worrying about mistakenly cooking them up for dinner. Buckwheat pillows that can go in the freezer also can be soothing. If the swelling is aggravated by water-retention issues, make sure that you are drinking eight glasses of water a day. Water is a natural diurectic in many ways, and can help eliminate bloating/ swelling issues.

    Bobbi — NGDF Online Facilitator

    Anonymous
    Participant
    October 20, 2003 at 10:09 am
    Post count: 93172
    #1091601

    I too was recently diagnosed with Graves. One question I asked was about pregnancy. We weren’t really trying to have a third child but weren’t preventing it. I was told it would be better to not have to deal with a pregnancy on top of trying to control the thyroid. But guess what one week later we found out we were expecting baby #3. I’ve had 3 ultrasounds and baby is doing good. I’m now at 12 weeks and am no longer high risk. This pregnancy comes along with more tests more routine visits and closer monitoring of baby and me. But I’ve been put on PTU and a betablocker and am feeling well. My doctors have been great and really supportive. So my advice would maybe to wait for the baby until your thyroid is under control but if not things will work out as long as you have understanding doctors.

    Anonymous
    Participant
    October 20, 2004 at 12:09 am
    Post count: 93172
    #1091602

    I was diagnosed with graves disease in late June. Since then I’ve done the blood work every week, the ultrasounds, the pictures, and everything else that all of you understand. I don’t have an endo. I’m seeing my regular dr. I’ve been on PTU for about 3 1/2 months now and continue to do blood work every week. Every week they tell me that it is not getting better and change my dosage. Last week I asked if it was normal to have so many changes in dosage or if they usually see some change by now. The nurse just gave me the “uh, sure, your normal.” I dont feel confident in that though, and Im really questioning my care. I have not actually seen my doctor since the beginning of August, or talked to her. Her nurses just call me. Im just wondering if this is normal. If anyone else has experined this change in PTU dosage so often without actually seeing a dr.

    I’m not sure if my frustration is with my dr, or with how I feel. I’m 20 years old and have a hard time going out, and walking to classes, which is something that none of my friends experience, so its frutrating. Also, one of my most obvious symptoms is my feet. They have places that vains have broken and have red spots, blue vains sticking out and also they swell up to about the middle of my calf now. Most of all, they hurt really badly. I also get out of breath very easily and find myself trying not to talk as Im walking in order to save my breaths.

    My emotions are also very different. I feel sad a lot more, and take things a lot more personally. I don’t feel depressed, but I feel sad. I don’t know if this is related or not, I’ve heard it can be. I usually don’t feel like this, and Im trying to figure it out.

    Sorry this is so long, I guess I needed to vent. LOL thank you.

    Anonymous
    Participant
    October 20, 2004 at 7:54 am
    Post count: 93172
    #1091603

    I think you need to get a second opinion from another well-qualified doctor. An endo would probably be best, but if that is not possible, then a good internist. The meds are usually a good chemical block to the production of thyroid hormone, so if the meds you are on are not controlling things, there is a problem and you should get it fixed if possible sooner, rather than later. Undertreated hyperthyroidism can lead to nasty, sometimes sudden, complications. And, no, a nurse is not acceptable. It would be acceptable if the meds were working correctly to control your hyperthyroidism, but since they are not, you need to ask to see a doctor.

    Bobbi — NGDF Online Facilitator

    Anonymous
    Participant
    July 28, 2006 at 4:18 pm
    Post count: 93172
    #1091604

    i have been diagnosed with graves disease since i was 15.i have the eye disease as well.for the past 4 years i have totally tried to ignore this issue because i felt awkward being in high school and having a severe case of graves disease.i am now starting to realize i cant pretend that i dont have it.it turns out there are so many people who have thyroid diseases and it is only recently since i finally started to come out with it that i have found others who have gone through similar health issues.my one teacher had graves disease and she reccomended me to this site :)

    Anonymous
    Participant
    July 28, 2006 at 4:23 pm
    Post count: 93172
    #1091605

    Welcome to the NGDF Bulletin Board and so happy that you have realized that you can’t ignore this health issue. If you go to the recommened reading you will find a list of books that may further educate you are many of the issues that we have.

    Diane B On-Line Facilitator

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