[Kimberly]

#1017824

Welcome to the online bulletin board support group hosted by the Graves’ Disease Foundation! You will find this board and its members to be a great source of information, inspiration, encouragement, ideas, and support. Here’s what you need to know to get started…

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Quick Links (note: you will need to click your browser’s “back” button to return to the message boards after viewing the links below):

Graves’ Disease Foundation Home Page: http://www.ngdf.org
Listing of local support groups: http://www.ngdf.org/pages/11
Free publications from the Graves’ Disease Foundation: http://www.ngdf.org/pages/65
Graves’ Disease Foundation Facebook Page: http://www.facebook.com/pages/Graves-Di … 2413847565

Note: Posting your comments directly on this thread is NOT recommended, as current users will probably not see them. See #4 for instructions on starting a new thread or replying to an existing thread.

[stu77]

#1061127

hi all my name is stu im 34 and suffer from graves, iv been diagnosed for about 1yr and im havin real difficulity coping with the side effects from my medication or if i stop taking them the the symptoms of graves ” title=”Sad” /> . every couple of weeks i have realy bad leg numbness and my legs give out and wont support me this has now spread to my arms so i cant even pull myself up into a sitting position when in bed if im lucky enough to get to bed before it gets to bad. im short temperd like a volcanoe ready to blow all the time, im starving all the time and iv put weight on even though my diet and exercise havnt changed. my consultant seems to be no help what so ever just says keep taking your tablets, im on 40mg of carbimazole and 120mg of propranolol aday. my legs are whats worring me the mostas they havnt got better at all since taking my medication iv been in to hospital 3 or 4 times and the doctors always say its poatassium deff which is caused by graves that causes the weakness so i started eating lots of bananas which are high in poatassium but this hasnt helped and surely my tablets should of made a difference by now.ty all for reading and hope someone can offer some sort of advice ” title=”Smile” /> ” title=”Very Happy” />

[Kimberly]

#1061128

Hello and welcome!

We aren’t doctors here, just fellow patients…but here are a couple of thoughts. Muscle weakness is absolutely a symptom of hyperthyroidism. Once you get your levels under control, you should gradually start to see some improvement.

1. You mentioned stopping the meds…if you aren’t taking the meds consistently, this could be setting back your recovery. If the side effects are so severe that this is preventing you from taking the meds, you might talk to your doctor about alternatives. There are three treatment options for hyperthyroidism: Anti-Thyroid Drugs (2 different drugs are available), Radioactive Iodine to destroy the thyroid gland, and surgery to remove the thyroid gland. All three options have risks and benefits; with RAI or surgery, you will need to take thyroid replacement hormone for life.

2. Can you get hard copies of your actual lab results? It might be helpful for you to take a look at these, so you can see if the meds are having a positive impact.

As Graves’ patients, many of us find that we have to be *extremely* aggressive and be our own advocates in order to get the care that we deserve.

[JenyZ]

#1061129

hello, everyone.
My name is jennifer and I’ve recently had a close friend diagnosed with this and am just looking for some tips and support.
Concentrating is out of the question for this person at the moment, that’s why I’m here.
I think they have had all of the symptoms possible, they will see their doctor again Wednesday of this week, but giving my friend some tips on how to stay calm and stop freaking out and getting confused during our conversations has been a really huge challenge.
Thank goodness for this forum.
” title=”Smile” />

[Kimberly]

#1061130

Hello and thank you for being an advocate for your friend! If you have specific questions, please feel free to post them here.

For Graves’ patients who are having difficulty concentrating, it can be helpful to bring a friend or family member to doctors’ appointments — and to ask for information in writing.

If you are looking for general info, we have over 40 free bulletins available on our web site on all different aspects of Graves’. From our home page at http://www.ngdf.org, if you click on the word “Publications” (ignore the drop-downs), you will see several different categories of information.

[Kellimoe]

#1061131

My name is Kelli and I was just diagnosed with Grave’s 2 weeks ago. I knew I had it but the eye disease part of the diagnosis is the tough part. My goiter is shrinking, the tremors have ceased and my double vision has ended. My eyelids have retracted and they want to start radiation on them. I needed more time to research this topic because I don’t really know about the benefits of doing such a thing and I don’t want to do something that I will regret. Has anyone had this done? I have a definite lid-lag with retracting eyelids but the swelling around my eyes has gone down significantly with the use of steroids. I’m scared of radiation and they already tried to fit me for the radiation mask, which didn’t work due to my claustrophobia. I’m having nightmares about this and I could truly use suggestions from my fellow diagnosed friends. I’m okay with the hyperthyroidism because the meds are working for me but the eye disease will continue even if they took the thyroid out, so dealing with this has been difficult. Please…any thoughts on the radiation therapy will be much appreciated.

[john1991]

#1061132

Hi my names hogn and I’m 20 years old just diagnosed with graves. I actually found out by chance when I went to the doctors because of a 5 stone weight gain in a year which was odd. Turns out I have many of the classical symptoms of graves. I’ve been having problems dealing with anxiety and depression issues aswell as concentration and hand tremors. I’m glad I found this so I can try and find out as much info as possible.

[Christy3]

#1061133

Hello Kelly,

My name is Christy, I’m a 47-year-old women. I was diagnosed with Graves disease in 2004. I’m going to tell you what I went through if that can help, but please do not base your decision of having or not having RAI on my experience. Read more on this and ask questions to your doctor, even though, I noticed that with doctors you have to know what to ask, so perhaps you should write your questions in advance.

As I said, I had Graves disease, Hyperthyroidism and Thyroid Eye Disease in 2004. Both my eyes were really "wide" and puffy. I’ve always had big eyes. I remember back in 1998, and even way before that, people would think my big eyes were beautiful. At that time they were just big not puffy, the sort of big and beautiful eyes. I guess I was already sick then, but didn’t know it. So in 2004, I knew I was sick because I felt extremely tired, I could hardly get up to go to work and ended up getting fired. I’m a single mom, so that was really hard for me. One day (just before I got fired), after work, I was sitting in the bus and noticed that I could hear my heart pounding in my chest. I thought: "How come I could hear my heart beat?" I thought that wasn’t normal and so instead of going home, I went to the hospital and told the doctor that I could hear my heart beat. He laughed and said: "Well, that’s a good sign, otherwise you’d be dead, right?". But after doing blood tests on me and asking me questions, he came back and told me I had Graves disease. My symptoms were: In one year, I had lost 10 kgs (22 lbs) – I weighted 49 kgs (108 lbs) instead of 59 kgs (130 lbs) which was my weight in 2003. I had palpitations. My stomach was frequently running. I was extremely tired. The blood work confirmed that I had Graves disease. So this doctor who was a general practitioner sent me to an Endocrinoligist.

The Endocrinologist prescribed me some PTU tablets (Propylthiouracil), but told me about my options on this matter. 1) I could go on taking tablets forever 2) I could take the Radio Active Iodine treatment (RAI) or 3) have my thyroid removed. After she explained to me that there were no known side effects to RAI, except the fact that I might not be able to conceive, I opted for RAI thinking instead of going through a surgery for Thyroid removal, I could go for RAI, anyways, I already had children, so there was really nothing to worry about. As I said earlier, back then in 2004, both my eyes were sort of staring "big, wide open" and puffy. So, I went for the RAI in 2005 and after a while (maybe 6 months after) I noticed that one eye remained bigger than the other one. This happened gradually, so I didn’t realize it was happening. Ever since then, I haven’t had any hyperthyroidism, I’m not hypo neither. I don’t take any medication. Although, I’m still a bit tired, I could feel my legs and arms being a bit tired, but it’s not as bad as before.

The only problem I have is my right eye being bigger than my left eye. I have been feeling so uncomfortable ever since. One’s appearance is important, especially the face. People look at your face before seeing you, or even before listening to you. Sometimes people judge you just by looking at your face. So, it’s been hard for me. I have been battling to have one eye look like the other since 2005. I had an eyelid surgery done in 2007 which made it look less bigger, but it’s still is bigger. Now, in 2012, I’m thinking about having a "small bone orbital decompression surgery". I hope this works and that my right eye will look like the other one. I’m reading to have more information on this. It seems to me that double vision is a complication which can result from this. I’m not sure…

I’m sorry if my response is so long. I thought I’d write about my experience in general to provide that info to those who need it. As for the RAI, I’ve always thought that it affected my right eye. My left eye has a normal size. If I could go back and have the option again, I would choose to have my thyroid removed rather than having the RAI which is a nuclear treatment after all. However, this is my point of vue. As I said, please read, ask around and mostly ask the right questions to your doctor.

Best of luck.

C

[Christy3]

#1061134

Kellimoe wrote:My name is Kelli and I was just diagnosed with Grave’s 2 weeks ago. I knew I had it but the eye disease part of the diagnosis is the tough part. My goiter is shrinking, the tremors have ceased and my double vision has ended. My eyelids have retracted and they want to start radiation on them. I needed more time to research this topic because I don’t really know about the benefits of doing such a thing and I don’t want to do something that I will regret. Has anyone had this done? I have a definite lid-lag with retracting eyelids but the swelling around my eyes has gone down significantly with the use of steroids. I’m scared of radiation and they already tried to fit me for the radiation mask, which didn’t work due to my claustrophobia. I’m having nightmares about this and I could truly use suggestions from my fellow diagnosed friends. I’m okay with the hyperthyroidism because the meds are working for me but the eye disease will continue even if they took the thyroid out, so dealing with this has been difficult. Please…any thoughts on the radiation therapy will be much appreciated.

Hello Kelli,

I posted a response to your topic but can’t seem to find it. I hope you’ve seen, I posted it today around 4 a.m. (I couldn’t sleep). I’m new in this forum and I’m sort of having a hard time getting by. Hopefully you find my message. I shared my experience with RAI in there. If you can’t find it, let me know and I will share again. Christy.

[lacoop]

#1061135

Hello. My name is Lori. I was diagnosed with Hyperthyroidism in 1996. A few months later with Graves. I opted for the RAI cocktail. In 1999, I had the decompression surgery. All went well with no problems. No problems with meds, I kept a close eye on my levels.
Now I’m afraid the Graves has gone out of "remission". I was hoping the pressure I was feeling was being caused by the changing weather. But now I’m not sure. I’ll have to wait until the first of the year before going to my doctor. I’m hoping someone on this forum can give me some insight as to what to expect. Are there any other treatment options, or am I doomed for blindness? I am scared out of my wits.
Any information would be greatly appreciated.

[Kimberly]

#1061136

Hello – When you say you are concerned about coming out of remission, I’m not sure if you are talking about thyroid hormone levels being off kilter, or if you are specifically talking about Thyroid Eye Disease (or both). Either way, I would *not* recommend waiting until the first of the year to see a doctor. If money/insurance is an issue, you can search for free and low-cost clinics that take patients regardless of insurance status at http://www.hrsa.gov/index.html. (The zip code search feature is on the right-hand side of the screen; you will need to use your browser’s "back" button to return to this board after viewing).

Once patients have a bout with Thyroid Eye Disease, recurrence is rare, but it *can* happen. Hopefully, what you are dealing with isn’t TED, but you will want to see a specialist to find out for sure. And if your vision is being compromised again, you definitely want to see a doctor right away — without waiting for things to get worse.

Wishing you all the best!

[Kimberly]

#1061137

Note: Posting comments or questions directly on this thread is NOT recommended. Facilitators will read and respond to posts, but other members who might be able to provide helpful feedback will probably not see your comments unless they are posted on the main board below. See #4 for instructions on starting a new thread or replying to an existing thread.

[elaineH]

#1061138

Hello,
Found out last June that I still have GD. It has been 7 years since I had radiaton treatment for GD. All that as been done since then was TSH blood tests – nothing else. I found myself last June feeling like I did 7 years ago when I was diagnosed. With some new issues as well – blurred vision, bulging eyes, horseness, difficutly swallowing, and tenderness on the thyroid that was left. Was referred to an Endo that ran TSH receptor antibody, CRP, Cortisol Random, and ACTH, Plasma tests. Test results show I still had GD antibodies. Also had ultrasouond and was determined I have a small lymph node with possible micorclifiations and prominent color Doppler flow. TSH came back that medicine needed to be adjusted. At the time this was happening I was going through a very stressful time. New job, new boss, major life decisions. So meds were adjusted and I moved to another state. I now live in Maine. Very rural so my choices of Endos is limited and most don’t take new patients. The Endo I have in Maine was the one that let me know that I still have GD disease and also GD with the eyes. Endo said the only thing that can be done for GD was to give me steriods, but felt that would be worse than what I was experiencing. Had ultrasouond done end of September. Not even close to the ultrasound exam I had in Phoenix, AZ. This one was like a basic ultrasound 1/2 hour tops. The one I had in Phoenix was almost an hour. Endo came back that nothing has changed so do another ultrasound in 6 months. So why am I putting all this out there? I am having another GD episode. I didn’t realize it until yesterday. I have been having difficulty with my job performance, my partner is telling me he can tell I am off again. The episode is like the one last June. Very intense. I am hoping someone can give me some advice or experience on how to handle this. I am also wondering if I need to get second opinion on the nodule as the Endo in Phoenix felt it was something that needed to be addressed quickly. And how can I get control of these episodes. I hope to hear your ideas.

[Kimberly]

#1061139

Hello – I’m taking a quick break from working a conference from the American Thyroid Association, but I wanted to get your post up. You will get more responses by posting in the main section, instead of this one. Most regular readers skip the announcements.

Since you are concerned about a relapse of your GD (which *can* occasionally happen after RAI), getting Free T3 and Free T4 checked will be helpful going forward, instead of just TSH. If your GD is indeed back, you have the same treatment options as before: ATDs, RAI, or surgery. Getting your levels back in balance should take care of your other symptoms.

We aren’t experts on nodules, but if you are not comfortable with the doc who performed this latest exam, a second opinion would definitely make sense.

Take care!

[elaineH]

#1061140

Thank you Kimberly for your fast reply. Interestingly, the Endo in Maine said no more radiation or xrays. See you are from Phoenix. I am am too! Lived there since 1991. Moved to Maine in July. I will take your advice and post to the general area. Question, I am seeing that stress for me can be a major culprit on bringing on the episodes. Have you or other members experienced the same?

[Author]

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