[Anonymous]

#1021000

Hi Gary. I’ve been on Tapazole for 19 months and my symptoms still seem to sort of ebb and flow. I go through a period of a couple of weeks where I feel like I can take on the world and then I’ll have a few days where I’m so exhausted and my muscles are in so much pain that I can barely function. I think that this is a normal response after our bodies have been through the wringer with hyperthyroidism. Some people feel well almost immediately after beginning treatment and some take more time. My experience was that I felt enormous improvement within a month of beginning treatment, but have never quite gotten back to my old definition of normal. Maybe I’ll get there eventually but I’ve made peace with the fact that this may be as good as it gets. I hope this helps and I’d be happy to try to answer anymore questions that I can, since I’m a few months ahead of you in the treatment process.

Tracy

[Anonymous]

#1079060

I was just diagnosed with Graves one week ago. I went to my nurse practitioner for awful headaches. She discovered my thyroid was quit enlarged & ordered blood tests. I have since had a thyroid scan & more blood tests & last week met with my endo. He discovered I without a doubt had Graves. This is all so new as I only got my blood taken for the first time for this. It is all very freaky to me. I have been put on 50 mg of beta blockers twice a day to control my heart rate & tremors and just started methimazole last week. I will stay on methimazole for two months and then get another blood sample taken first week of July & will meet with my endo in middle of September. He said I will eventually have to get the Radioactive Iodine Treatment, which is a little freaky to me. Can you help me understand what I can expect after the Iodine treatment. I have read different things like you can’t be around people for very long, very close to people & such. I also wanted to know about having children with graves and after RAI, I have yet to have children & am only 28 so that was in my near future. I appreciate all comments as this is a whole new world to me. Thank You, Danielle

[Anonymous]

#1079061

Hi Danielle,

I’d never heard of this until I had it, either. I can tell you that the RAI procedure is really easy, all you do is swallow a pill, and don’t have full-on contact with kids or pregnant women for a couple of days. I had a really salty taste in my mouth for a few weeks afterward. Your thyroid will release what’s in it, so your levels probably would go up after RAI, and then they are supposed to taper down, although everyone has a different story about what has happened, how fast it has happened, etc. The important thing is for your doctors to keep taking your blood and monitoring you.

I’m only 24 but I did ask some kid questions before I had RAI, just thinking in the future. You are not supposed to get pregnant for 6 months to a year after radiation (people seem to have differing opinions about the length of time). But the good news is that it is supposed to be better to have kids after the radiation than before, because it is easier to regulate thyroid up than it is to regulated it down. The endo I was seeing at the time said that levels normally flucuate during pregnancy, so it’s important that they keep an eye on you during that time and are able to make adjustments.

Good luck, it’s a long road and the hardest part is that people do not really understand how this disease affects people mentally and physically. At least on this site, you can vent to people who understand!

[Anonymous]

#1079062

Another question regarding RAI treatment- What about weight gain after RAI is that significant?

[Anonymous]

#1079063

I was diagnosed with graves the beginning of sept.06. I am under an endocrinologist care. I was just wondering what my thyroid blood levels should be. I should recieve my blood work any day. Besides a virus, etc. i haven’t been sick a day in my life until now. I thought i was monapasal with parkinsons. I did not have weight loss or loss of hair. I’ve weighed approximately the same since i was a teenager and I’ve worked hard to do that. I hate the idea of weight gain. Does everybody gain weight?

[Anonymous]

#1079064

There can be weight fluctuations with the treatment — sometimes up, sometimes down. I lost another 18 pounds after my RAI — go figure.

The issue is this: while hyperthyroid, we lose muscle mass. The longer we are hyperthyroid, the more muscle may be lost. This comes in as weight loss because muscle weighs more than other body tissues. But this is extremely bad weight to lose: muscle burns more calories, even at rest, than do other body tissues. So having muscle RAISES our metabolism.

When we are brought back to normal levels of thyroid hormone, the muscle mass slowly returns. Ah: we see weight gain. But this is GOOD weight gain, because this returning muscle will make us stronger, and it will also raise our metabolism, allowing us to eat more without gaining extra weight.

So, right now, what you need to keep in mind is eating wisely. Your body needs good nutrients, not a weight-loss diet right now. But if you watch the unnecessary calories (sugar, for example, potato chips, etc.) whatever weight comes back should be good weight, not bad weight. I regained 15 pounds eventually without changing clothing size — ie. it was returning muscle, not flab.

As to what your thyroid levels should be: they should be within the “normal” range. The test your doctor will rely on the most is the TSH test (thyroid stimulating hormone — which comes from the pituitary gland). The pituitary senses how much thyroid hormone is in your body, and it either raises it’s production of TSH to stimulate the thyroid cells to produce more hormone, or it lowers its production to try to suppress the production of thyroid hormone. If TSH is within the normal zone, then your thyroid hormone levels are “normal” for you.

I do hope you are feeling better soon.
Bobbi — NGDF Online Facilitator

[Anonymous]

#1079065

Hi everyone my name is Victoria. I am turning 27 this month and I just had a baby girl 4 months ago. Sept 06 I was diagnosed with Graves and Hyperthyroid disease. I was first put on Tapazole 10mg’s 3x a day as well as Inderal 10mg 3x day. I went for blood work three weeks after starting my meds and my levels have doubled to my suprise! My T3 is now 899. I had switched meds to PTU 600mg a day. Does anyone knowhow long is the average to start feeling better and if anyone had a problem with either of these drugs. I would greatly appreciate it!

[Anonymous]

#1079066

This board has been a great help. The middle of Jan., I was told I had Graves. I was lucky because I was already seeing a doctor for a thyroid nodule for over a year. I had blood work done the last of Dec. He had me do another uptake the first part of Jan. I still have problems believing that I have Graves. The main thing that my husband and I talked about was wondering if I had had a stroke. I couldn’t always get the words out or they came out wrong. We had started having a few fights and that’s not normal.

I am having new blood work done on the 12th of Feb. and the following week seeing the Dr. I have a list of question to ask him. He is not very forthcoming with information. He explained Graves as, my body’s thermostat got stuck on high. The answers that I get out of the Dr. will tell if I stay with him or find someone that will give me answers.

After reading “Graves’ Disease In our own words”, I have found out that I am one of those people that needs to know everything, even if it isn’t going to happening to me.

Thanks for allowing me to let off steam.

Julie

PS: I am on ATD

[Anonymous]

#1079067

Welcome Julie,

It does, at times, feels like we’ve had a stroke. My words get mixed up all the time. Especially, when I’m tired. Then it seems like I can barely speak at all. It is embrassing when I’m out doing errands and can’t explain to someone in a store what I’m looking for. I sure do get a lot of strange looks.

As you have probably read, Graves Disease is an autoimmune disease. Which means our bodies are attacking itself. Or like with Graves Disease it is attacking the thyroid. There isn’t anything we can do to prevent this disease, or is it something that we’ve done wrong. Your doctor say it is like your body is stuck on high. What happens with Graves Disease is that it overproduces thyroid hormone or underproduces it. The signal gets all mixed up.

Good luck with your upcoming appointments.

Diane B On-Line Facilitator

[Anonymous]

#1079068

Hi, Julie:

And welcome to our board. You might also want to try getting a copy of either “The Thyroid Sourcebook,” or “Your Thyroid: A Home Reference.” These books, and their authors, are listed under Recommended Reading. Since you said you want to learn as much as you can about the disease, one of these books might provide a good reference as questions arise. No one book seemed to have all the answers to my questions, but these, in addition to the one you’ve already read, may cover most issues, and in language that is easy to understand.

One other thing: we do tend to be more emotionally volatile during these days. It is a hormonal imbalance, and it makes us more emotional, rather than rational. Our feelings are more easily hurt than normal. We tend to get angry faster than normal. Do not trust your emotional responses right now — they may be out-of-propotion for a while.

I do hope you are feeling better soon.
Bobbi — NGDF Online Facilitator

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