[Ewenme]

#1064702

Welcome to our world, newbie10. You’ll find this is a very helpful site for having your questions asked and just for sharing your experience with others who are in the same situation.
I was diagnosed in March of this year–am on anti thyroid drugs (methimazole–aka tapazole) in hopes of attaining remission. You’ll be offered some different options for treatment and will find people on this board who can tell you more about whatever option you choose, because they, themselves have gone through them. We have some excellent facilitators who can provide details, but just wanted to say ‘hi, and welcome."
Joy

[newbie10]

#1018423

Went to family doctor in March of 2009 because I wasn’t feeling well & had a lump on the front of my right side of my neck. Doctor did ultra sound & took blood work. Bloodwork showed I had hyperthyroidism. Went for a needle biopsy and later a thyroid scan. I had an enlarged nodule on my right side of my thyroid. Was referred to a thyroid specialist. Put on tapazole to normalize the thyroid production before surgery. Had right side of thyroid removed and tested in November of 2009. Thank God, no signs of cancer. The doctors were hoping by removing my right side my thryoid would go back to normal production. It seemed to shortly afterwards and I didn’t have take any thyroid medication. I had blood work done at the end of May 2010 right before I went back to the specialist at the beginning of June. On june 4, I was told that my thyroid was still overactive and I went and had another thyroid scan done. In July 2010, I was told I have Grave’s Disease. Right now I’m taking tapazole and will have to have blood work done this week. So, this is all new to me and I know I have to talk to the specialist about all my different options on treating graves disease. I’m interested in joining the GDF Bulletin Board to have other people to talk too and listen to their experiences and learn and find comfort from knowing that I’m not alone in having this condition.

[newbie10]

#1064703

Thank you Ewenme (Joy) for welcoming me to the site. It is comforting to be able to talk to others that are dealing with Graves Disease. Your diagnoses is fairly recent also. I hope you are able to attain remission by being on the tapazole. For me it seems like it came out of the blue being diagnosed with hyperthyroidism then just finding out I have graves disease. I never heard anything about graves disease until my diagnoses. I have side effects of fast heartbeat, frequent bowel movements, tiredness, hot flashes, & sometimes I just feeling off like something is right. I have been searching the internet to learn about the condition and that is how I found the GDF website. So far it has been a very useful tool.

[snelsen]

#1064704

Glad you are here. This is a very reliable site, plus the support means so much, and that you are not alone.
A small point, and I am pretty sure this is correct. Grave’s disease IS hyperthyroidism. They are synonymous terms.
Sounds like you have some good docs on board, a really good start. As you know Tapazole is given to suppress some thyroid production, to get rid of your hyper symptoms, and back to a euthyroid state. You endo will probably suggest RAI (radioactive iodine, to destoy your thyroid, followed by a period when you are still in an up and down state, while your body uses up the thyroid that is stored, then when that happens, you will probably become hypothyroid, and then begin taking a thyroid supplement. YOu will have more labs, and reporting how you re feeling, and sooner or later you will get to a steady state, be euthyroid in how you feel, and reflected by your labs in a normal range. It all takes way too much time, and you can be in a roller coaster thyroid state while all this is accomplished. Pretty much the same with surgery. You will find that some people on this site choose surgery, some chose RAI. Some knew instantly that they wanted (or did not want,) one or the other option. I chose surgery, had a subtotal thyroidectomy. This website lists that as the surgical option, but some of the facilitators has said on this site that it is the practice to do a total thyroidectomy. I would ask the endo and the surgeon that question when/if you get to that point. I think there is a smaller group of people who do not want either option, and choose to continue to take anti-thyroid drugs, as you are doing now, and I know next to nothing of this option, if it really rare, or if it continues to be the choice over a lifetime. There are some contraindications with each of the two antithyroid (ATD) drugs, some of which might indicate stopping the drug.

If you go to the search window, and type "surgery" you will see many posts, and the thought process people went through to reach their individual decision. Same with "RAI."

There is one complication which a few of us get, called Thyroid Eye Disease, or TED. I have TED right now, and it developed decades after I had thyrotixicosis (another name for hyperthyroidism). I took Tapezole, got in normal ranges, then had subtotal thyroidectomy. That would definitely be my choice again. The remaining thyroid tissue took care of me for many years, now I take Synthroid, a thyroid hormone to make up for what my body is not making an adequate amount anymore.

Regarding how I felt when hyper, I had all your symptoms, plus eating all the time and losing weight, being super cold all the time, and being irritable and VERY difficult to live with. Lots of muscle wasting and weakness. Everything about our body is in overdrive. A dangerous place to be for a long period of time.

Best of luck in feeling better fast! It takes a while to get to the place where you feel good. I am sure glad that your thyroid nodule was not malignant. At least, if you have surgery, you have some idea of what to expect in the post op period! I am sure you will hear from many more of us, plus our wonderful facilitators.
Shirley, still dealing with TED, which I am really tired of doing!

[snelsen]

#1064705

Read about the San Diego conference in October! Any way you can come? It will be my first time. Shirley

[newbie10]

#1064706

Thank you Shirley for welcoming me to the site and all the useful information. When I last saw the Doctor in June and he told me that I was hyper again, he said that the option he leans towards is the RAI. But after I had the thryroid scan to confirm everything, the doctor called me and put me on the tapazole. He told me that we would discuss all the options once he got my levels to where he wants them. Since I already had a subtotal thyroidectomy. I’m not sure I want to have another sugery to remove the right side. The surgery I went thru with a breezy and had no complications. But I am going to talk to my doctor about all the pros & cons with each option. Either way I will have to take a thyroid hormone for the rest of my lift. This seems like a fantastic site to get well educated on the issues of graves disease.

Thank you for sharing you story with me. It sounds like you made the right decision for yourself. I don’t have TED yet. Is your TED improving? I sure hope so. I will have to make sure I tell my eye specialist about having GD.

I have not really lost any weight which I know normally you do. I have been emotional and I know difficult to live with. But I have had anxiety issue for many many years. Sometimes it’s hard to tell whether the anxiety is due to graves or just some other thing going on.

[newbie10]

#1064707

I also read about the San Diego conference in October. I believe it would be very informative to go to but I won’t be attending. I live in PA and I don’t fly. I would love to go and meet all of the people with Graves issues and hear the speakers. I can only hope they have one soon closer to my area. I hope you are able to go and get alot of information & comfort from attending.
Karen

[marta1234]

#1064708

i was diagnozed with Graves Disease after blood test, iodine intake test and ultrasound. Ultrasound showed two 3mm nodules , however doctor told me not to worry about them. Should I be concerned about them ? In my family there is no history of thyroid problem so maybe it isn’t Graves but nodules that make my thyroid overactive?

[Bobbi]

#1064709

Hi, Marta:

Having nodules does not necessarily mean that they are causing the outpouring of thyroid hormone that leads to hyperthyroidism. Some nodules are "cold" – meaning they’re inactive.

If you want to be sure why you were given the Graves diagnosis, you need to get a copy of the report on your various scans, and discuss them with your doctor. If you see the word "diffuse" on the report from your scan, for example, this means that your entire thyroid ate up the test iodine (and this is an indication that it is Graves, rather than the nodule). But, even if it IS the nodule causing the problem, the treatment options are exactly the same. Hyperthyroidism MUST be treated, no matter what the cause. Left untreated it will play havoc with your health.

[marta1234]

#1064710

thank you Bobby for your reply. I am very new to this problem and very unfamiliar. I dont even know my blood test results , but I know that iodine intake test came at 38%. I understand that I am somwhere in the middle of the problem ? I noticed that a lot of patients has nodules biopsy done. Is it rare procedure or should be done as a precaution? Should I suggest it to my doctor or more likely it is unnecessary?

[Kimberly]

#1064711

Marta1234 – Keep in mind that the 38% figure does not tell you whether or not you have nodules…the 38% is the % of iodine that your *entire* thyroid gobbled up. Nodules are identified by looking at a "picture" showing if there are certain parts of your thyroid that took up more or less iodine than the rest of the gland. Tiny parts of your thyroid that take up a ton of iodine are referred to as "hot" — and parts of your thyroid that took up *no* iodine are referred to as "cold".

Thyroid nodules are actually fairly common, especially as we age…many people live their whole lives not even *knowing* that they have nodules. It’s rare for nodules to be cancerous, but a doctor may order a biopsy if he/she has reason to suspect cancer. Cold nodules are more likely to arouse suspicion of cancer than hot nodules.

You can check with your doc and/or get a copy of the results of your scan to see if nodules were a concern in your case…but generally, this is something your doc will tell you when you receive the uptake % results.

[marta1234]

#1064712

thanks Kimberly!! Durning Ultrasound doc found out two 3 mm nodules, however durning the iodine uptake scan technician told me that he doesnt see any nodules at all and my % is 38. I learned more from technician as from my endo, as endo doesnt explain me a lot. It is fault as well since I didn’t know much about it. Now , my list of questions for next visit is really growing. ” title=”Very Happy” />
beside nodules problem , can you please let me know what 38% result mean? Where 38% (after 24 hour) is placed somwhere in the middle of thyroid problem?. Doc explained me that he needs to do this test on me to confirm whenever I have GD or transient hyperthyroidism . Is that the usually reason why that test is taken?

[Kimberly]

#1064713

marta1234 – We can’t interpret specific labs here, but the keys to this test are to note what the "normal" range is for your particular lab (it will vary from lab to lab), note whether your uptake was higher than the "normal" range, and to note whether the uptake was noted as "diffuse" (evenly spread around the thyroid) or if there were specific "hot" or "cold" spots noted. A higher than normal, diffuse uptake is generally consistent with Graves’ — although this test by itself does not diagnose Graves. A diagnosis is usually made in conjunction with thyroid function tests (TSH, T3, T4) and often antibody tests (TRab, TSI).

The 38% figure means that that is the % of the original dose of radioactive iodine that you took that eventually ended up in your thyroid gland.

Hope this helps!

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