[Jayne April 4, 2013 at 5:40 pm Post count: 1]

#1059819

I was diagnosed last week. Grave’s Disease is quite confusing. I was started on Methiazole 15 mg per day. BetaBlocker as needed. I thought that the
hyperthyroidism ends once the Grave’s “kills” off the thyroid and then you go on Synthroid to get regulated and that is it. But reading some posts here make it sound like the hyperthyroidism fluctuates. I am overwhelmed right now. I became ill in 2010 with a viral syndrome that converted me into a Type 1 diabetic now using an insulin pump, was found to have Lyme Disease, which was treated and I felt great for 3 weeks and then started having extreme fatigue and thought the Lyme Disease was acting up but it was that I have Grave’s Disease. In the past 3 years I have had less than 3 months of feeling good. I used to run, bike 5 miles per day and/or swim 3 miles per day. I haven’t worked out in 3 months. Will I ever feel healthy again? Or is this the new normal?

[KimberlyOnline Facilitator April 4, 2013 at 5:48 pm Post count: 4294]

#1177910

Hello and welcome – I am running out the door, but a couple of thoughts…

There are three treatment options, and two of them (RAI and thyroidectomy) involve destroying/removing the thyroid and then taking replacement hormone for life. The third option is to continue on with the anti-thyroid drugs.

All three options have pros and cons, and you will find members here who have been happy with all three treatment choices. It sounds like you’ve only been on the meds for a few days. Methimazole starts working right away to block production of *new* thyroid hormone, but your body needs some time to burn off its existing stores of excess thyroid hormone, which can typically take a few weeks.

Take care – and please check back to let us know how you are doing!

[adenure April 4, 2013 at 9:20 pm Post count: 491]

#1177911

Hi Jayne,

Welcome! You have been through a lot! Graves doesn’t kill off the thyroid, although I’ve heard the same thing said a few times. Hyperthyroidism that is not managed with methimazole or another anti- thyroid drug like PTU, surgery, or RAI is very, very dangerous. It can actually kill a person. As dramatic as that sounds, an out of control heart rate, heart palpitations- extra thyroid hormone can cause muscle waste and even heart failure (as the heart is a muscle)- also it puts the body on overdrive with symptoms of tremors, weight loss, anxiety, insomnia, diarrhea. All of this can lead to thyroid storm which is a very serious, emergency situation. So, please, do make sure you take the methimazole and don’t wait for the Graves to burn out your thyroid.

I too was always very active and healthy. I do not have Lyme or diabetes. But, since I’ve had my surgery (8 months ago) to get rid of my thyroid, I’m doing better. I’m able to work out 4-5 times a week- 30 min. of hard cardio on the bike, go for walks, and just be active again. It’s not to the extent that I used to be (60 min. spin classes, swimming laps for 40 min. and weight training for an hour). But, that’s okay. I’m glad to be healthy, happy, and be able to work out again. Good luck to you!

[gerical April 26, 2013 at 4:03 pm Post count: 36]

#1177912

I am very confused also. endocrine wants to go straight to RAI treatment but I am very confused about the whole thing. don;t know which options are the best for me. ALl I know is that I have to do something soon because I feel awful. Tired of explaining why I am nervous, moody and generally don’t feel well. Sometimes this heart racing thing can be pretty overwhelming. Once you treat it does it ever just “go away”. very overwhelmed.

[npattersonModerator April 26, 2013 at 10:05 pm Post count: 398]

#1177913

Dear Gerical,

It sounds like you may benefit from a second opinion, preferably from a doctor who specializes in (or at least treats quite a few) thyroid patients. They should give you the true picture of the advantages/disadvantages of the three treatments. On the “About” part of the home page, you can get to a bulletin that explains all three. If you can’t find it, send me your regular e-mail and I can send it to you.

I am not too clear on what you have already done, or are considering doing, but NO, do not wait for your thyroid to “burn out”. Is everythng all right after you get things treated…that’s a loaded question! For millions of people that have treated Graves’, things are truly fine. It was more like having the flu. HOwever, very few of those patients are on the internet telling how well they feel. The internet can scare one to pieces in some cases, or giuve you sound, active listyening and support. If you are being offered some medication for your heart, and your general “hyper” (nervous, moody, can’t think straight, etc), for goodness sake, take it. Most important is to get to a doctor who will listen, and have a dialogue. Take someone with you–husband, friend, parent–anyone who will be there for you, and be able to listen to what the doctor says. 1 and 1/2 sets of ears are better than the 1/2 most of us have at the doctors office.

Take care,

Nancy

[Raspberry April 26, 2013 at 10:35 pm Post count: 273]

#1177914

Gerical and Jayne, wishing you both luck and please take your time and learn all that you can. With ATD treatment you will be stabilized and be able to take your time to choose what path is best for you.

NPatterson, do you know if there’s any study or statistics anywhere on outcomes for the three different treatment options? I know that people are most likely to post if they have problems so the internet isn’t an objective measure. What I’d love to see is something like some measurement of life functioning one year out, three years out, five years out for the three different options. Life functioning would include physical and psychological wellness, impact on working life too. I may be dreaming but this would be so useful.

[gerical April 27, 2013 at 2:53 pm Post count: 36]

#1177915

Thanks soooo much for your responses Nancy and Rasberry. It means so much to know that you have somewhere to go to vent, get information , and to be able to listen to the stories of others going through the same thing. Today is not a great day, my nerves have gotten the best of me…..took my Lopressor like the doctor ordered so at least I am doing something right now. I am awaiting the results of the RAI uptake scan and ultrasound, although I am not sure what difference it will make since my thyroid antibodies are off the hook. I find out Monday and have a follow-up with the doctor next week. I am going to take your advice Nancy and dive into all the information I can get my hands on so I go there with more answers than questions.
Thanks so much, the support you give here is priceless!

Geri

[gerical April 27, 2013 at 2:55 pm Post count: 36]

#1177916

Oh and Jayne…..good luck with everything!

[gerical April 28, 2013 at 4:40 am Post count: 36]

#1177917

OK so here is the most stupid question I could ever think of? Once you have a TT or RAI and you become hypo there is no more Graves disease?

[snelsen April 28, 2013 at 7:25 am Post count: 1909]

#1177918

To gerical-The goal of TT is to remove your thyroid gland completely. That is why it is called a total thyroidectomy. So, after the surgery, there is still a bit of thyroid hormone flowing around our body, that was there before the surgery. Then that is all used up, and the only way to have enough thyroid hormone for or body, and it is essential to life, is to take thyroid replacement, in the form of a pill. There is a generic and a brand name. Brand name is Synthyroid, the generic name is levothyroxine.
The goal of an RAI is the very same, with the same goal, and the same everything. Only difference afterward, is that it takes a shorter period of time to use up the hormone we naturally produce, with a TT. IT takes a longer time after an RAI, to get regulated with thyroid hormone replacement. Cause it takes a longer time for the RAI to destroy the thyroid gland, which is the purpose of RAI (and Surgery.)

Brief answer to your question? Yes, we are hypo after that. But we really cannot say we don’t have Graves’ disease. We do. We will then take medication for the rest of our lives to replace what our body can no longer provide.

Hope this helps.
Shirley

[gerical April 28, 2013 at 3:29 pm Post count: 36]

#1177919

YEs thanks Shirley I appreciate it and I hope this post finds you well!

[gerical April 29, 2013 at 11:29 am Post count: 36]

#1177920

Hi to all! OK so just got back the results of the ultrasound and RAI scan:

ultrasound: Multinodular goiter (4 identified nodules)
RAI scan: uptake is in the hyperthyroid range with homogeneous distribution

So I am waiting for the endo to call me. I was able to get the report on a patient portal after 72 hours.

TRAB antibodies positive, TSI antibodies mildly elevated.

Wow too much information!

So my question is, do I have two seperate problems causing the hyper or is it all from Graves!

Geri

[KimberlyOnline Facilitator April 29, 2013 at 2:11 pm Post count: 4294]

#1177921

@gerical – We’re all fellow patients here, so your doctor is in the best position to help you sort through exactly what is going on.

If the word “toxic” is used with the term “multinodular goiter”, that indicates that the nodules are pouring out extra thyroid hormone. However, some nodules don’t take up any iodine at all. These will definitely be questions for your doctor.

You might also be interested in the second link in the “Treatment Options” thread in the announcements section of the forum, which goes through the various causes of hyperthyroidism, including Graves’, and Toxic Multinodular Goiter.

Take care – and please keep us posted!

[gerical April 29, 2013 at 3:47 pm Post count: 36]

#1177922

Thanks Kimberly. I will keep you posted. I am already reading as much as I can so I don’t talk to the endo blind! I will see her Wednesday!

[DeeColleen April 30, 2013 at 4:34 am Post count: 12]

#1177923

I am sorry that you are experiencing so much all in such a crammed period. Graves disease is a long journey, my doctor refuses to do the iodine treatment; thus I am stuck on methmithizole until my thyroid function is in a normal range. The experience is daunting in itself, but know that this community will provide all the support you need.

Best wishes
Dee

[Author]

Posts