[DianneW]

in reply to: How long should I plan be off work for surgery or IRA? #1073966

That is so individual that it’s difficult to predict, and would be different for surgery than for RAI.

Many people don’t ever take any time off work for RAI, depending on what the job is and how severe the hyperthyroidism is, and how well-controlled the levels are during the entire process. If your job is very physical or very stressful, you may need time off, whereas if you have a low-key, low-profile job in a back office with understanding employers, you might make it through without missing a day. You might be the boss or responsible for managing other employees, and not emotionally in a condition to handle those stresses without damaging your career. This is a case where ideally a good discussion with your doctor about your capacity to function would result in an assessment of whether time off from normal duties is required; and if so, an estimation of when normal duties may be resumed.

Typically the period of time necessary to restore thyroid levels to normal on a stable basis following RAI takes a minimum of 6 months, but more often 9 months to a year. During the early months especially, this process can be very uncomfortable (for some people more than others). Some people report feeling worse once they become hypothyroid than they ever felt when hyperthyroid, while others report that they were happy to become hypothyroid because it felt better to them than being hyperthyroid.

My guess is that if you choose RAI and needed time off work at all, you may or may not take a few days off for the RAI to avoid exposure to other people if you work closely with them, and it’s possible you might have a period of a couple of weeks or less (about a week after your RAI) when your damaged thyroid "dumped" excess hormone, making you more hyperthyroid for that time and increasing your symptoms. After that, you may or may not feel bad enough when you become hypothyroid to need time off work for a short time while thyroid replacement hormone kicked in. If so, it would probably only be for a few weeks.

If you choose surgery, my guess is that you might need about two weeks off work, but wait to see what people who have had the surgery actually say about that. I do know that the process of adjusting replacement hormone is faster for most people following surgery than it is following RAI, so in that regard it’s a lot more pleasant. The trade-off is that as with all surgeries, there are some risks. In the hands of a good surgeon, those risks are minimized.

But as for your question, how long do you plan? It’s impossible to say for sure, because you can’t see into the future. You’ll have more of an idea when you make your treatment choice. After that, it depends on your individual circumstances (your doctor might have some idea), and if you need more time you should take it. You said you have a high stress job and commute a long distance, and I think you should consider those factors in your decision. That might mean you need a lot more time off than some other people do. Other factors to consider are how much help you have at home, child care arrangements, whether you are risking your career by showing up in poor condition, and whether you’re risking your safety by driving in poor condition, and whether you’re able to get enough rest. There are probably others I haven’t mentioned. Be easy on yourself. Consider working shorter days or shorter weeks for awhile if that works.

Best wishes in all those decisions,

[DianneW]

in reply to: What if you do not treat? #1074024

With your doctor’s okay you might consider walking rather than running 5 miles a day, and if you have any severe symptoms before your appointment in March, don’t hesitate to go to an emergency room. This disease can be unpredictable at times, because certain conditions occasionally set off super-high thyroid levels, and that can happen suddenly. In rare instances it leads to thyroid storm, which is a life-threatening emergency and sometimes fatal even when treated. Anyway, I can’t imagine why your doctor told you osteoporosis was the only risk of not treating your hyperthyroidism. When you see your new doctor and explain your reasons for remaining untreated this long, I hope you’ll mention that and see if he agrees.

I was a mail carrier and was able to continue delivering my mail route, which involved much more than five miles of walking, plus carrying heavy loads. I was in condition for it, though. Strenuous aerobic activity was out of the question until the hyperthyroidism was controlled.

I didn’t miss any work when hyperthyroid, but I was an emotional wreck and a real witch (probably spelled with a b). I had gone untreated for a long time simply because my doctor didn’t figure out what was wrong with me until my eyes changed significantly, and by then I had a lot of memory problems too. It took quite awhile after my levels were normalized for me to start feeling like my brain and emotions were functioning somewhat normally again. I don’t think it’s good to remain hyperthyroid for long periods.

You’ll feel so much better once you get the right treatment, if you find a doctor who really listens to you. Sometimes finding that right doctor is most of the battle, but it’s very important. I’ve found that no matter how good a doctor is, if s/he isn’t able to understand the problem I’m experiencing, take it seriously, and have the willingness to find an answer, nothing will change for me and I’m wasting my time and money. That kind of insult the last thing an ill person needs.

I hope your new doctor is the right one so your search is at an end. If not, please start your treatment anyway so you can start healing while you continue the search. There are posts on finding a doctor that might be helpful that you should find if you do a search.

Best wishes

[DianneW]

in reply to: Terrible feeling of cold and sweating at nigh #1073978

Hi Monika,

That sounds like a rough night. When I was hyper I often felt cold and then used too many blankets, resulting in getting too hot while I slept and waking up soaking wet as you described. I haven’t been on PTU so can’t comment on that aspect from personal experience. Are you thinking these problems might be related to PTU? If so, I’d definitely give the doctor a call.

I hope you are feeling better soon and don’t have these problems too many more nights.

[DianneW]

in reply to: running with untreated hyperthyroidism #1074041

I was an avid cyclist and rode my bicycle for a long time with untreated Graves’ Disease. I was in really good shape, riding at least 200 miles every week, but thought it was strange that my heart rate got so high. Later on when I had trouble making it up the hills, I thought perhaps I wasn’t eating enough, so I ate differently for the next ride and pushed on. My doctor had already dismissed other symptoms I’d consulted him for, so I hesitated seeing him again for anything. I went hiking with friends and noticed I had trouble climbing up on a big rock with my thigh muscles. I thought that was age creeping up (early 40’s). Silly me!

Eventually I couldn’t get up those hills at all on my bicycle, so just as Nancy says, untreated, the disease will keep us from vigorous exercising. (Strangely enough, I still didn’t realize I was sick.) Later on when I was diagnosed and told by my endo NOT to ride my bike, I wondered whether I’d risked heart damage without knowing it. Fortunately, my heart is now perfect.

[DianneW]

in reply to: Total Thyroidectomy Scheduled 2/5/09 #1073989

I’ve sent email to one of our volunteers who had a thyroidectomy several years ago with good results, asking her to answer these questions, if she has time. I’m sure others also will respond. I can look up some others I’ve corresponded with if necessary, who I’m sure will be glad to come on the board and answer these questions.

Best wishes,

[DianneW]

in reply to: New here, have lots of questions #1074150

Crista, that’s really great to hear! You’re right, there ARE lots of great people on this board. I’ve met so many wonderful people because of this disease that my life has changed in a really positive way; and honestly, if a genie offered me a chance to take away this disease and restore my eyes to normal, I wouldn’t take that offer if it also took away all those people I’ve met and experiences shared.

It appears to me that you’re making some wise and healthy choices, and if your doctor is diligent you can avoid going hypo and shouldn’t have to worry about that causing weight gain. You might want to communicate to him that you worry about going hypo and ask for his help in avoiding that. Perhaps he’ll be especially careful if he knows it’s of concern to you. Some doctors are more responsive than others to such requests.

If you’re like most of us, some days will be better than others during this journey, but one of these days you’ll find you’re having mostly good days again. I hope that is soon for you.

[DianneW]

in reply to: Research #1073986

Yes, part of the money goes towards research. In fact, Dr. Terry Smith, our head medical adviser, is involved in research that is very close to finding the cause of (and novel treatments for) this disease. He spoke about the progress at the annual conference in San Diego last October. (The next conference will be held on the east coast the weekend of October 17-19, 2009.)

Your involvement in fund-raising would be appreciated, no doubt. Have you joined the GDF? Call 1-877-NGDF-123 for information. To discuss fundraising, email: Nancy Patterson nancyngdf@bellsouth.net

Thanks, and glad you found us!

[DianneW]

in reply to: My flue and hyperthyroidism #1074164

I will be glad to call and talk to your mom. I can also send her some written information about the safety of RAI if you want to send me your address by private message.

Right now I’m more concerned that you aren’t taking as many methimazole pills as your doctor prescribed, because that is what will help shrink your thyroid and help you sleep at night. It will also bring down your temperature and heart rate. Every pill you miss delays the time when you’re going to feel better.

It’s understandable that if your family is from Russia, worries about Chernobyl would make anything that has to do with radiation seem scary. It was a horrible accident, with people nearby suffering terribly. Still, I was just reading about that yesterday and it’s amazing how few problems people have had who were exposed to large doses of radioactive fallout, which had amounts of radiation much larger than people receive with RAI. International studies of the matter concluded that there has been no increase in birth defects, and no increase in cancer rates (with the exception of thyroid cancer). Not only that, animal wildlife is flourishing in the area known as the "dead zone". There is also no evidence of widespread birth defects or problems in the wildlife.

If your mom can’t be convinced or if you still have reservations, then surgery is a good option. Keep in mind that you should be able to normalize your thyroid levels by staying on the methimazole if you take the pills exactly as your doctor prescribed. If you’re not going to do what your doctor advises, you’re much better off to have the surgery or RAI. It’s dangerous to remain hyperthyroid.

I hope you start to feel better and are able to sleep. I get the idea you’re having a really rough time and wish there was something more we could do to help, but in the meantime, I’ll call your mom.

Best wishes,

[DianneW]

in reply to: High Blood Pressure #1074031

It’s very early in your son’s treatment. I’m sure it’s very scary for you to see your son’s blood pressure so high. His doctor is familiar with the particulars of his case that would have a bearing on how soon his blood pressure might normalize, so why don’t you ask? There are really so many variables that only his doctor could even come close to figuring it out.

From what I understand about Amy’s son, he was undiagnosed for a long time, so that might be a factor in the reasons it’s taking more time for his blood pressure to normalize. I’ve talked with adults who were hyperthyroid a long time and who told me it took a long time for their heart function to return to normal, but eventually it does. I would guess that it’s similar for teenagers, but only his doctor could answer that question of course.

Anyway, welcome to this board. We’re glad you found us, and if there are questions we can answer that aren’t medical questions about his specific case (which is beyond our scope), we’ll give it our best shot. Also, maybe you and Amy should get together, as you do have a lot in common!

Best wishes,

[DianneW]

in reply to: Surgery #1074034

Hi Hopeful,

I’ve sent you a private message with an email address to officially ask about putting the website link on your T-shirt, but I would think it would be good advertisement. There could be something I’m not aware of, so please send the email.

Why would you think the RAI would interfere with having a baby in the future, if you don’t mind my asking?

Best wishes,

[DianneW]

in reply to: What if you do not treat? #1074021

Jenny, as Madame X told you, it’s essential that you treat your hyperthyroidism. The negative effects on your heart and brain are occurring, even though you don’t feel like they are. By not treating, you’re putting your life and mental health at risk.

If you didn’t feel well on Tapazole it’s possible that your endo was over-treating you; that is, making you slightly hypothyroid. Some doctors simply aren’t too skilled at managing antithyroid drugs.

What I suggest you do is to find a different endocrinologist and have your records transferred there, and then discuss with him reasons that you might not have felt well when you were treated before, and then talk about what else can be tried. If you aren’t happy with what he has to say, then talk to a another doctor still, until you find one who will treat you in a way you find acceptable and explain the reasons in a way you can connect with.

You MUST be treated. This isn’t going away, and the track record before treatments were available was that half of patients died of the disease. Those aren’t good odds, and I hope you won’t play.

[DianneW]

in reply to: Most Likely has Grave’s… #1074017

It’s completely normal to go through a wide range of emotions when first dealing with the realization that one has a disease that will have life-long implications. If your husband does have Graves’, he will certainly need management of his thyroid levels for the rest of his life. This does NOT mean that he won’t feel entirely well, because most people feel well and have a normal lifespan. In fact, a speaker at one of our conferences, Robert Chang, made it to the summit of Mt. Everest after being treated for Graves’ Disease. http://www.robchanginspires.com/ Another speaker with Graves’, George Hood, set the Guinness Book of World Records for stationary cycling. http://www.ridegeorgeride.org/

Then there was Gail Devers who won Olympic Gold in track. There was a movie made on her story, which I had the misfortune to see immediately following my diagnosis before I had very much real information on the disease. The movie was poorly made and I hope it’s never shown again, because it’s misleading about the treatment issues. In the movie Gail’s feet were nearly amputated and they showed her receiving some kind of radiation treatments, but were never clear what those were. She was hospitalized and very ill. This had nothing to do with the experience of most Graves’ patients, but because my feet hurt, I was afraid I would end up like she did. My point is that if anyone sees this movie, don’t take it too seriously. I think it could be edited and be turned into a good resource for GD patients though.

What makes your husband think he will have life-long problems with the treatments? Not all of the treatments are easy short-term, but they all work, and he WILL feel better. He will certainly feel better than he does now.

I know I’m preaching to the choir now. Please invite him to join us on the board and talk to some other people who actually know what he’s going through.

In the meantime, I can only imagine what it’s like for you. Hang in there.

Best wishes,

[DianneW]

in reply to: synthroid #1074012

I don’t think you’re crazy at all. It’s either something about the changes in your levels, or it is something about the pink pill. You’ll eventually figure out which it is.

It’s possible that you were having a reaction to the dye in the pink pill. As Madame X said, talk to the pharmacist about what might be in the pink (.112) pill, that isn’t in the .125 pill. There could be something besides the dye that’s different. If it’s ONLY the dye, then you might want to think about whether you have a similar reaction when you consume other products that use red or pink dyes, and perhaps find out from the pharmacist exactly which dye is used so you can read product labels and avoid that one in the future.

If it seems to be the dye in the pill, your doctor can switch you to a different brand that doesn’t use the same dyes. It might take longer to adjust your levels since different brands aren’t completely bioequivalent, but he can make it work for you.

Good luck solving that puzzle!

[DianneW]

in reply to: Questions #1074113

If your endo says your thyroid levels are normal, he’s essentially saying your thyroid levels aren’t responsible for your rapid heart beat or your weak leg muscles. I suggest you talk with him about what could be causing these problems at this point.

Now that your eyes are involved, it’s important to keep your thyroid levels normal, since your eyes can worsen if they aren’t.

If you were hyperthyroid for a long time and lost a lot of muscle during that time, your legs could be weak for that reason, and sometimes it can take awhile for hearts to function entirely normally again as well. Whether this is what’s happening for you, your doctor can tell you.

Good luck with your ophthalmologist appointment; hope there is good news, and use lots of artificial tears in the mean time to stay comfortable.

[DianneW]

in reply to: New here, have lots of questions #1074146

Crista asked whether her hives would go away after being on methimazole for awhile.

Right now in the early stages of treatment since you’re on a higher dose, any reactions such as hives will probably be worse. If you are motivated to stick it out, it may not be long before your doctor reduces your dose and you will find that the hives become less bothersome. Or—you and your doctor might decide instead to try the other antithyroid drug, PTU. It’s possible you would have a reaction to it as well, but just as likely you won’t.

Another option is to ask your doctor if there is a non-drowsy alternative to Benadryl. I don’t know that there is, but it’s worth inquiring about.

Your mom’s advice to take some time off from school to take care of your health makes sense, if you’re able to do that. You said you have a child? If so, my guess is that you’d need any physical and emotional energy you can muster for motherhood right now. I can’t even imagine how any of you women with children are coping while hyperthyroid. I had trouble enough dealing with myself at that time. I hope all of you with children are getting help when you need it.

Back to the weight issues. You can be sure that no one hates weight gain any more than I do, but I worked hard to put this in perspective for myself since I had no choice. My husband and I met while I was recovering from Graves’ Disease and I still had a good share of the weight gain, and hadn’t had any of my eye surgeries yet.

At our wedding I was still 10 pounds more than my pre-Graves’ weight, my eyes still bulged, and I had a draining infection under my eye, but I knew that my husband and all the people in my life loved me for the person I am, not for shallow outward factors that can be taken away when a disease hits. It’s a very secure place to be.

So please, those of you who are so concerned about weight, this is a sick obsession of modern society. If we gain a few pounds during the course of treatment, we can take it off again, if we’re motivated to make the healthy choices. But our loved ones would rather have a few more pounds to love than bury us, or even than to see us all skinny and crazed and stressed, and not sleeping at night. I get really worried when I see anyone even think of not treating, but especially because of weight worries. Anyone who believes that being hyperthyroid is the only way, or a valid way, to control weight is mistaken. It’s more like taking the path to destruction.

Okay, off my soap box. ” title=”Smile” />

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