[raventsaid]

#1017927

October 2010 I was diagnosed with graves. I thought I was having a heart attack, which was scary unto itself, at the hospital they checked my thyroid levels because I was only 35 years of age. After confirming with the uptake, an endocrinologist was suggested and I went to see her, she is wonderful. I was put on tapazole 10 mg twice a day, by december my numbers were great to where my meds were cut to once a day only. A couple of weeks ago (mid-may) i started having anxiety attacks and the start of heart palpatations again. Called the docs office they said to go back on the beta blocker. Does this mean I am going backwards and should I start thinking about having the radiation done? I would like some advice, this is driving me nuts, plus its scary when the heart just goes out of control.

Thanks

[Bobbi]

#1061667

Try not to think of it as "going backwards" – although I know that is hard. With an autoimmune disease fluctuating antibody levels occur ALL the time. Sometimes our antibody levels are really high, for no well-understood reason — and our symptoms get worse. Other times, these levels subside (again, for no well-understood reason) and our symptoms get better, or go away for a while (remission). There’s no rhyme or reason known at this point in time. With an autoimmune disease, you need to understand that the disease will come and go. Some folks get really lucky and the disease symptoms remit for years. Others don’t experience that. But fluctuation is what is expected, what is normal. Not anything unusual, and while it feels like going backwards, it really is only the nature of the disease.

[raventsaid]

#1061668

Thanks for the the response. Its good to know that we can fluctuate in the disease and its not that unusual. I wish we understood the causes a bit more, but I’ll just keep chugging along; go and see the endo at end of june and maybe try to make an informed decision and not a quick decision just cause my anxiety gets the best of me.

Thanks again.

[trlrunner]

#1061669

Hi! I am new to this page and just happened upon this post. I was diagnosed with Graves on March 4, 2011. I had all of the normal symptoms – racing and irregular heartbeat, leg and hand tremors, weight loss, muscle weakness and soreness, extreme fatigue, dry eyes, mood swings, all the usual suspects. I elected to try Tapazole and have now been on it for 12 weeks. I was able to discontinue the beta blocker 4 weeks ago. This thread is interesting to me because I am noticing the ‘up and down’ feeling – some really good days and some not so good days. I am not sure if it is too early to expect more consistency in feeling good or if it will continue this up and down cycle. The frustrating/discouraging thing for me is that I am an endurance athlete. I am an avid trail runner and cyclist so this disease has really been a major bump in the road in relation to my lifestyle. My husband and I had planned on a summer of fun, long runs and races in the mountains; lots of cycling, too. Much
of our social outlet has been related to doing these activities with each other and friends. It certainly has been a bit of a loss in that my body is just not able to perform well enough to do the things we love so much. Yes, I am running some and riding some, but SO slowly and some days I am just too exhausted to feel like even trying it. My doc says to ‘hang in there for awhile’ but I am wondering if I am holding out hope for something that, in reality, may not come back. Doc cut my dosage in half at 7 weeks because my labs were ‘normalizing’ nicely. I had another lab done two weeks ago and most of my numbers are near the normal ranges. In my doc’s words, my ‘toes are almost touching the finish line’, in terms of my labs normalizing. But like was mentioned in a previous entry, I feel like I am sliding backward at this point. I’ve got just a bit of leg tremors again, and I think I feel more drained than I did a month ago yet my labs are showing improvement. Is it just going to be a roller coaster, luck of the draw each day?
Thanks for any words of wisdom!

[Kimberly]

#1061670

Hello and welcome to the boards!

Every patient’s journey with Graves’ is a little different. I felt really wiped out for about the first 10 weeks on Methimazole (generic for Tapazole), and then after that, things slowly got better. It’s pretty common, though, to have good days and bad days. And in terms of getting back into strenuous activity, it will be important to pace yourself and make sure that your doc is OK with the level of activity you are doing. Being hyperthyroid can cause bone/muscle wasting, so it’s likely that it will take some time to build back up to your previous strength and stamina.

By the way, if you check out the "announcements" section at the top of the boards, you will see some info about a Graves’ patient who is getting ready to bike 3,000 miles from Anchorage, AK to San Francisco, CA! That should definitely give you hope that things *can* get better!

[trlrunner]

#1061671

Thank you, Kimberly! Last week, I did see the Announcement about Michaela’s 3000 mile ride and contacted her. We exchanged a few quick emails as she is getting ready to embark on her adventure tomorrow. I live in Colorado, as well.
She indicated that it took her around 6 months to get back to feeling close to ‘normal’ after starting the Methamazole. I am only just over 12 weeks – I guess I was holding out hope for a quicker rebound. I have not been able to find much info on Graves as it relates to the endurance athlete. Also, it would be interesting to find whether or not there are extra benefits for Graves people to use extra supplementation (ie, vitamins, etc) in their diets or perhaps to stay away from certain supplements. I like whole foods, when possible, but certain supplements are handy and convenient. Any thoughts?
Thank you for your help. I guess I will just have to be patient with myself. BTW, my doc encouraged me to do, in terms of physical activity, whatever my body is capable of doing, just don’t try to push over the edge (which I am probably prone to do!).

[raventsaid]

#1061672

Hey Trlrunner,

Looks like with the responses, that for each of us it will be different. I used to be very active before Graves got a hold of me, not as much as yourself, but I ran;,worked-out; and I admit my motto was always work hard and play harder. So far I still have energy to walk but not run at all, tried to work slowly back into it, but I couldn’t so I just walk and do light weights when my body allows it. As far as the play harder – well yep my lifestly as it was is at a crawl now, though at this point… I still enjoy a couple of hours out with friends but call it pretty early in the evening which maybe better for my body anyway. The heart just scares me because I have heart disease on both sides of the family so that scared me, but honestly seeing everyone elses response I am starting to feel a bit more relief.

Bobbi, Kimberly – thank you for your responses and helping those of us that need help

[saratoga17]

#1061673

Hi Raventsaid,
I also had heart symptoms. Beats per minute over 140 almost always for months before my diagnosis. I am a 37 year old male and when I went to the ER with the palpitations they diagnosed me with anxiety because of my age, gave me some ativan and sent me home. I also thought maybe I was having a heart attack. The best thing I ever did was go for a stress test, if you’re worried about the heart problems definitley go have one done. When it comes back ok it is one less thing to worry about and with graves anything you can clarify and not worry about helps. I think we are all aware of the mental tricks it plays on us. I started out on 30mg of Methimazole a day and then was reduced to 10mg only to go back to 20mg. There seem to be many steps on the way to getting healthy, sometimes it seems we are heading backwards, but I think it is a good sign if you know your body and it can tell if something is wrong. I just had RAI done in Jan. things were great for a couple months, now I have what I guess is brain fog, disorientation, loss of short term memory and not able to concentrate. Just not sharp or focused as I once was, and my levels are in the "normal range" or very close. I can’t give you advice on RAI because I’m still not sure with the way I’m feeling, but I did discuss with my endo, who I trust, did a ton of research and made sure my Graves wasn’t going into remission before I had it done. Good luck my friend

[Kimberly]

#1061674

trlrunner wrote: Also, it would be interesting to find whether or not there are extra benefits for Graves people to use extra supplementation (ie, vitamins, etc) in their diets or perhaps to stay away from certain supplements.

Hello – My doc recommended a good multivitamin, but with *no* iodine. The body uses iodine to manufacture thyroid hormone, so if we are being treated for hypER, the last thing we need is extra iodine. Supplements such as bladderwrack and kelp also contain high levels of iodine and should be avoided. Keep in mind that any mineral or vitamin can be toxic if taken in excess amounts – and some can affect the absorption of other meds – so definitely consult with a doctor before adding any supplement to your daily regimen.

Glad to hear that you got in touch with Michaela – she is a real inspiration. Tomorrow is the big day when the team departs from Anchorage!

[trlrunner]

#1061675

Thank you, Kimberly – you touched exactly on what I was looking for in terms of supplements – iodine. I wonder if anyone knows whether there is iodine in glucosamine/chondroitin (derived from shellfish). Just curious. I am also wondering whether or not taking in a little extra protein might help with the potential muscle wasting that Graves causes. The heart symptoms are scary, too. My heart related symptoms had improved a month or so ago but seemingly, coinciding with the methimazole dosage reduction 5 weeks ago, those subtly seem to be returning – not bad yet – but since I know what they are now, I am certainly taking note. A person starts to wonder about things – does my ATD need to be increased again, for awhile because the lower dosage isn’t controlling the Graves and that is why some of the symptoms are creeping back up? It is a bit discouraging when I was feeling pretty good 5 weeks ago, thinking I had turned a corner and things were going to only get better, and then start the slow backward slide the past weeks. It sounds like it is just the nature of the beast and this journey will be a lesson in patience. It is still early in the journey and I am learning a lot! ” title=”Very Happy” />

[Kimberly]

#1061676

Hello – My guess is that any supplement that is a shellfish derivative will have at least some level of iodine in it. Your doctor or pharmacist might be able to provide more information. While it is important to make sure and get adequate protein, doing *anything* to excess is generally not a good idea. We had a nutritionist present at the 2009 conference, and she suggested that patients who are losing weight while hypER get 0.8 grams of protein for every 1 kilogram of body weight. (One kilogram is about 2.2 pounds). So someone who weighs 220 pounds would want 80 grams of protein daily.

Yes, this journey is often “two steps forward, one step back”. But in between labs, any new or worrisome symptoms are definitely worth a call to your doctor’s office.

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