[Ski]

#1061970

Hi Wendy!

Welcome to the club you never wanted to join. ” title=”Very Happy” /> We’ve all been there ~ though you’ve got some interesting complications! Some of those tests/meds I’ve never heard of, so you’ve got a lot to manage. The tapazole is the med that’s specifically targeted to affect your thyroid hormone levels, just so you know, and you are likely to come down rather quickly and may get some hypo symptoms, because that’s kind of the initial mindset with ATDs ~ get the levels out of the hyper range, fast, and then tweak doses to find the best dose that keeps your levels normal.

As for the edema, hopefully that resolves as everything normalizes, but you should probably talk specifically about that with your doctor. If they haven’t told you to limit exercise at this point, ask them specifically about that too ~ typically while you are hyperthyroid, you should avoid exercise except the most mild form. Your muscles kind of "waste away" while hyperthyroid, and have a limited ability to regenerate, so it can actually cause more harm to your muscles and lengthen the amount of time before you feel well. In addition to that, a high resting heart rate should not be any higher, and hyperthyroidism also creates some odd electrical signals which can create random atypical heart rhythms, and it can be dangerous to exacerbate that condition with exercise. It doesn’t take long to get back into a position where you’re allowed, but initially it can be a bad idea.

In any event, we’re glad you found us so quickly after your diagnosis! Please look around and I’m sure you’ll find a lot of interesting information.

[WendySue]

#1017974

Greetings everyone, I just found out last night that I have graves disease. My TSH is .02, T4is 35, and tested positive for the antibodies. Resting heart rate is 108, blood pressure 98/56, my cholesterol dropped from 226 in November to 153 this week. My potassium is low 3.3, while taking potassium. My HDL, DL and Triglycerides also dropped, HDL is 69, LDL 70 and Tri is now 60.I am type 2 diabetic, my A1C increased to 5.8, I have been in tight control using diet and exercise for over 13 years. Nmber i usually 5.4 I am experiencing PVC’s and racing heart beats, tightness in my throat, legs and ankles retaining fluid, headaches, muscle weakness in legs, insomnia, tingling in finger tips, eyes are sore, memory problems, have not gotten my period since Feb., difficulty concentrating an focusing, lack of patience, hand tremors. Feel like a bowl of jello, jiggly, muscle and joints hurt and ache, tired and weak,, yet wide awake, can’t turn my mind off.

My GP put me on Triam/TZ 7/25 tab in March, 25 mg, 2x day added potassium 10 MEQ per day in April. Blood work on Apr 28 showed the whacked out thyroid levels. Saw Endo on Monday, he confirmed what my GP thought, GD. Endo put me on lopressor 50mg, 2x day, increased my potassium to 2x day, for one week, then once per day, need blood work in 2 weeks for electrolytes and added topazole 10mg 3x day and discontinued the diuretics. Will get complete blood work done in 5 weeks, see Endo again in 6 weeks.

Any advice on how to get rid of the edema in my legs?? Can exercise help?? How long before meds start to kick in?

Thank you for any and all words of wisdom and advice!
~Wendy

[WendySue]

#1061971

Thank you for the quick reply Ski! ” title=”Very Happy” /> The HBA1C is a fasting blood test which shows your avg blood glucose # over approximately 3 months. When you are diabetic it is important to keep tight control of your blood glucose, doing a blood test with a meter at any given time is just a snap shot in time, the A1C is more accurate since it is the average overall, not just at that particular moment in time. I have been told to keep the A1C number under 6.0. Above 6.0 would require me to go on meds or insulin, something I wish to avoid at all cost for as long as I can. The Endo informed me my A1C might have gone up because of the GD.

I am not looking forward to the hypo, kinda like being hyper better. My heart does that premature ventricular contraction and makes sleeping difficult, I feel that mainly in the evening but also notice it during the day. Heart rate is dropping but still racing a bit. My legs are not as swollen today as yesterday.

Glad I found the clubhouse, thank you for welcoming me, wish we could all have met under much nicer of circumstances!

Is this a lifelong condition?? I have read about remission and many going out of remission.

[Kimberly]

#1061972

The good news with Graves’ is that once you get your hypERthyroidism treated, you *will* feel well again, and you can go back to living your life. But yes, Graves’ is something that we need to remain aware of our entire lives. Those who are fortunate enough to achieve remission via Anti-Thyroid Drugs need to remain vigilant for a return of their hypERthyroid symptoms, to ensure that they receive prompt treatment if this happens. Patients who are treated with RAI or surgery need to follow proper protocol every day for taking their replacement hormone, in addition to periodic monitoring to ensure that their dose remains appropriate. And unfortunately, the eye and skin involvement can crop up at any time — even years after treatment.

Once you’ve been treated, though, Graves’ hopefully won’t be a *huge* factor in your life!

P.S. Welcome to the clubhouse! Could you pass me a juice box? ” title=”Very Happy” />

[superdave]

#1061973

Hello everyone! I never would have imagined being diagnosed with Graves, but anything is possible. I’m fairly new to this, diagnosed three weeks ago. You would think Endos would move a little quicker with the help! I just received my script for Methimazole 10mg only to take the second pill and bam heart palpitations. I’ve only been on Methimazole two days, but the other drugs…..Metoprolol 100mg per day! I’m scaling this one back! Rythmol 225mg for heart palpitations and it’s starting to slowly fail me. I’ve lost 25lbs in three months. I’m tired! How about RAI?? So many negative stories, but it beats taking all the other meds to fight this! Please give me your honest thougts on RAI TREATMENT!

[WendySue]

#1061974

Hey Dave, welcome to the club! I have heart palpitations and high heart rate. My doc put me on 50mg of Lopressor, twice a day, plus potassium because my level is low. I feel my heart flip and race more at night then during the day, have been on meds for a week, starting to see a slight improvement. I take topazole 10mg 3 times a day. I think it is worth the try to control GD with meds first, before RAI or surgery. Least invasive method first is always my first option.

[Bobbi]

#1061975

Hi, Dave and welcome.

One word of caution for you (well maybe more than ONE…..): none of our treatment options works instantly (or even close to instantly) to bring us back to feeling normal. The antithyroid med you were put on starts immediately to interfere with the amount of thyroid hormone that is being produced. But the thyroid cells not only make hormone, they also store it for future needs. The stored supplies will continue to be released until they are used up. Then, your doctor will most likely have to adjust the dose of the ATD to get just the right amount. If you take too little you will stay hyperthyroid; if you take too much you will become hypothyroid. Finally, it takes months AT normal levels of hormone for our bodies to heal from the damage caused by too much thyroid hormone. How long it takes will depend upon how long you were hyper before being diagnosed. So, try to be patient with the meds your doctor puts you on. If you feel you have a problem with one or more of them, do not tinker on your own: talk with the doctor first. Some of the meds have to be stopped slowly, or there will be adverse side effects. Some of them require that we take them a certain amount of time as directed, in order to be able to tell how well they are working from blood tests. If we tinker on our own, we can increase the length of time it takes for us to feel well again.

As to folks posting negative comments about any of our treatment options — we need to recognize that the web is a source of both good and bad information. Discerning the difference can be difficult. There was a study done a few years ago that suggested that about 80% of medical information on the web was either out-dated, wrong, or dangerous (or, possibly all of the above). Pay attention to the websites from which you draw your data. Some are worthier of listening to than others. And, as far as any of the bulletin boards (including ours) goes, you need to understand that the folks currently posting are usually the newly diagnosed, or the minority of people who have encountered adverse side effects of one type or another. The people — and they are by far the majority — who get treated and get well again do not tend to populate online disease boards on a daily basis. So what you read is skewed towards disease, not health. This board is somewhat different because a decision was made long ago to have people who have gotten well again "moderate" the board. For this board currently that means me (RAI), Ski (RAI), Kimberly (ATDs) and, sometimes James (ATDs).

In general, ALL of our treatment options are vastly safer than remaining hyperthyroid.

[WendySue]

#1061976

Update 10-18-2011

Went to the Endo today, I am hyper again, was down to 10mg Methimazole, my TSH is .05 and T3, Free is 4.5, doc increased my dose to 20mg of Methimazole and 25 mg of lopressor to bring down my resting heart rate, it has gone up to 127 bpm this weekend.

Hair has been falling out again, started about 3 weeks ago, muscles and joints sore, skin is pretty dry on my face, my hair is very dry and difficult to manage.

Have been sleeping a bit more, but not feeling rested, have gotten 6-10 hours in and had other weeks where 2-3 was the avg.

I have modified my diet, no table salt, if I really feel the need to add salt, I have been using sea salt, sparingly. Reduced my carbs, and am eating more whole foods. Lemon water is my drink.

Doc and I spoke about the possibility that I may not go into remission, my thyroid is enlarged. RAI or Surgery may be in my future. At the moment we are sticking to the ATD’s.

Thank you all for your support and advice.

[snelsen]

#1061977

Hi Wendy Sue, I suggest you check with your doc before you use only sea salt. We need iodized salt in moderation. I am pretty sure that to avoid it completely, is not a good idea. Although you may get enough from other sources. The facilitators can weigh on this one, too.
Shirley

[WendySue]

#1061978

snelsen wrote:Hi Wendy Sue, I suggest you check with your doc before you use only sea salt. We need iodized salt in moderation. I am pretty sure that to avoid it completely, is not a good idea. Although you may get enough from other sources. The facilitators can weigh on this one, too.
Shirley

Hi Shirley!

Thank you for the advice, I will double check with my doctor, I believe I am getting idodized salt from other food sources, but you are right, I should confirm.

Every 7 weeks I do get blood work done for my endo, which often includes a complete CBC.

I would love to know what the facilitators have learned at any conferences, reports and articles as well.

Thanks!!

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