[Ski]

#1074331

You’re not "wrong" for thinking this way, but your body suffers while hyperthyroid, and the effects can take a very long time to heal, so prompt treatment is critical. Right now you’d be wise to educate yourself ~ read some of the recommended books, for instance ~ so you can be a more effective advocate for yourself and you can more quickly begin whatever treatment you choose.

You are not doomed to a life of substandard quality. Please remember that the majority of people we see here are either new patients, or they are struggling with their treatment. For the most part, patients are treated and feel fine, go on with their lives and never look for support or assistance.

The most important thing is that you begin some form of treatment, so find out about your three options, pick one and then speak with either your regular doctor or endo to get started.

It’s worth it.

[Trisha]

#1074332

I loved the fact that I was faster than any one else as well. I also loved walking around in the dead of winter needing nothing more than a sweatshirt. Or at least I thought I did. It was only after surgery and stablizing with synthroid that I realized how sick I had been. Check your pulse rate, you will be shocked! Honestly, I thought I would miss being hyper, but the truth is being well is so much better.

[PatriciaR]

#1019828

I’m really glad to have found this discussion board. I really need to know what I am up against. I have just been diagnosed with Graves and am now wondering "What next?"
I am a very "hyper" 37 year old. My entire adult life has been in fast forward. Queen of multitasking is now in fear of losing it all. From what I have been reading, I will never be the same after treatment. And thanks to the internet, I am scared out of my wits. I hve not seen an endo as of yet and my Dr has not perscribed anything. My antibodies were off the charts my, TSH was nowhere to be found, but my t3/4 wasn’t as high as they should be. My Dr was very unsure of my results as well as herself and made an endo appointment for me. Living in a remote part of Canada, it could be months before I can see someone.
My question is: How long can I go without treatment?
I am sweating alot, have blurred sight, "slightly" moody, no mucsle strength and tons of headaches. But I love the fact that I can go faster than anyone, it has been a big part of me. Am I wrong for thinking this way?

[elf]

#1074333

Hi Patricia,

I live in rural Canada (Eastern side) and when my tests came looking like yours (TSH non-existen, etc) my rural family Dr put me on PTU. There must be some guidelines for doctors at what dosage to start, and then it can be adjusted as needed. Do you have racing heart, trembling hands? Some people take beta-blockers along with PTU, to suppress the heart rate. I took only PTU, it brought my pulse rate within normal, hand tremors disappeared, and lab results improved.

A few weeks later saw Endo. (It’s 2 hours drive to a major city). They did an uptake scan on me (a test to determine that it was Graves indeed, and to check for any nodules or other funky stuff). Both my family dr (strongly) and the Endo (mildly) suggested RAI. 3 months after my diagnisis, I had RAI. 3 months because of all those waiting times to see the Endo (I saw him 2 or 3 times), waiting times for RAI, and I myself was unsure what to do. If I knew how easy I’d take it, I would have preferred to have RAI sooner. My eyes got involved 2 months after my diagnosis, so I am wondering had I had RAI before that, would’ve my eyes flared up at all? Probably yes.

Anyway, I needed that time to read and research about the disease. You will see a lot of scary stories from people who had it bad, either on ATDs (anti-thyroid drugs), RAI or surgery. The majority though is not writing on Internet because they are OK.

It’s a disease (or better to say, a syndrom) that will be with you from now on in some form – it’s possible to feel good and normal though with treatment. I can say that currently I feel as well as before Graves. I take one thyroid hormone pill in the morning, and that’s all the difference with what I used to be before Graves.

Due to our Canadian shortage of specialists, there may be not enough thyroid surgeons in that area, so the choice of treatment could be limited.

It’s been 3+ years that I had Graves and over that time I came to value peace. Multi-tasking was good when I was younger and in a high-stress job but but but… The body breaks (for us, it broke in the form of Graves), and that’s a hint. A hint to slow down and smell the roses.

[PatriciaR]

#1074334

Thank you so much for your positive words. The need to know "what could be" is an all consuming thought for me. The lack of positive stories out there was very disconcerning for me. Where else, besides here, can I get more positive information? Or answers to my questions…One that has been really getting me is time…If I go for the RAI, how much time will I have to take off of work (on average)…

[DianneW]

#1074335

The majority of people don’t ever take any time off work following RAI. I had to take time off work, and so do many others, but that’s not the most common occurrence.

When you read about experiences like mine, keep them in mind as one end of the spectrum of possibilities, but that isn’t to say it’s the expected outcome. I was (and still am) upset that my doctor didn’t let me know it could take a year to regain normal thyroid levels following RAI. When I tell people about that, I don’t mean to say that everyone will take that long. A significant number of people do go through a long period of adjusting thyroid levels following RAI, while others seem to breeze through. it depends on how difficult and stressful or physical each person’s job is whether job duties can be continued throughout that process, but I think most people are able to work.

Talk to your doctor about how s/he plans to manage your RAI to minimize the period of changing thyroid levels. There are ways to do this that make it easier on the patient. One way is to give a larger dose of RAI to cause hypothyroidism faster, though it’s impossible to completely predict for any individual patient just how fast or how completely the RAI will work. (Doctors have been trying for years.) Faster control of hyperthyroidism and more complete destruction of the thyroid generally means less fluctuation in thyroid levels, and faster stabilization on thyroid replacement hormone. Patients who fall in this category can have a really good experience with RAI, with little discomfort and probably no time off work, if all goes well.

If a dose of RAI is given that’s too small, the patient will still be hyperthyroid 3-6 months later and need to have another treatment. That doesn’t necessarily mean time off work, but it can be frustrating and prolong the time of being unwell.

Some of the patients who can take awhile to stabilize are often those given the lower doses meant to achieve a "euthyroid" state. Many doctors have given up that idea now since they’ve discovered that even when they’re successful (which isn’t often) nearly all patients who have RAI are hypothyroid in 10 years anyway. One of the reasons I had fluctuating levels for so long was that I had a relatively low dose and my levels dropped constantly for 4-5 years, so it took that long to become totally stable. I’d have been better off to have a larger dose that destroyed the thyroid initially.

So talk with your doctor about all these issues and about how long s/he expects it to take for you to be feeling well again. I think you have every reason to feel optimistic that you’ll be better soon!

Best wishes,

[shanette]

#1074336

Hi there, I was diagnosed 2/1/2010. I am a 34 year old female, never had children. My hormone level were fine, bloodwork came back fine but my thyroid scan indicates Graves. Some of the symptoms I could no longer ignore and found they were not triggered by pre-menopause or anything. I’ve lost weight, excessive sweating, very irregular cycles..now that my condition is identifed I can attribute headaches, fatigue, tremors, and anxiety, to Graves. Does anyone have any advise for me. I will have my consultation for treatment options in March but what should I expect daily? I know stress is the number one factor that I need to eliminate or reduce-help?

[Ski]

#1074337

Do as much research as you possibly can before your consultation, that way you can get started, with confidence, on your treatment route of choice. True, reducing stress (or at least your reaction to it) can help minimize your symptoms, but the bottom line is that everything else is a band-aid until you get your thyroid hormone levels under control, so look to that for REAL relief. In the meantime, you will find that you need to limit all kinds of activities, and even then you cannot count on feeling *well,* just "less bad" until you get your thyroid hormone levels under control.

We’re here for you ~ looks like you’ve definitely been searching through the archives, and that’s one of the best ways to get your information. There are some great books too ~ I always recommend Graves Disease: In Our Own Words, because it was generated by our very own Nancy and Jake, using posts from a prior version of this bulletin board, helpful bulletins on specific topics, and words of wisdom from our medical board ~ but there are other good, basic books on thyroid disease in general that can at least help you understand the mechanics of what’s going on in your body.

You will feel better. It will take time to get back to something you recall as normal. You will find that some people do not "believe" you when you say that you are very, very ill, but you can’t let that affect you. You need to take good, good care of yourself right now, preserve your physical resources so you can do the important stuff. By the way, the "important stuff" I refer to has more to do with what it does for YOU, not for others ~ if it is something you truly love, then keep on doing it. If it is something that you do out of a sense of duty, that drains your resources and leaves you feeling burdened, do not continue doing it.

Keep coming back here ~ this is one terrific group of people, and we are always happy to reach back from our position of health in order to help you join us.

[LaurelM]

#1074338

Hi,

If you can’t get into see an endo very soon, perhaps your Dr would be willing to start you on an anti-thyroid drug and/or beta-blocker. The beta-blocker doesn’t do anything to treat the hyperthyroid state but it can lessen some of the symptoms and make you feel a bit more comfortable.

Also, you mentioned that you were having issues with your eyes. You should schedule an appointment with an opthamologist to have them checked. Regular Drs and endos don’t generally deal much with the eye issues.

I hope you do not have a terribly long wait to be seen.

Laurel

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