[Anonymous]

#1077017

Hi Debra,

Everyone responds to treatment differently. Many times when my labs were okay I didn’t feel normal. There is a lot of misinformation about RAI that scares a lot of people but I just recently had it done in April and think it was the best choice I ever made. I had it rough for a few weeks after and went hypo very fast but am getting regulated on the new medication now and feel better than I have in three years, even better than when I was on the anti-thyroid medication and then in remission for two years after that. At this point, I think RAI is the best choice I ever made.

My husband didn’t understand Graves symptoms at first either but he did go to my second endo visit with me and that helped him to understand better. If you are already scheduled for RAI then you probably won’t have another endo visit until after that. My endo also gave me a pamphlet on Graves that listed the symptoms that I showed to my husband. If your endo didn’t give you anything like that, I think the symptoms are listed on this web site under Q & A (questions and answers) and maybe you could at least print those out or show them to your husband. My husband has had to develop a lot more patience and not take things personally and he has helped me around the house a lot more too. I’ve tried to make things easier and get food that is easy to prepare when I knew that I was going to be too exhausted to do it myself.

Best wishes for your improved health and happiness in the near future.

Laura

[Anonymous]

#1020391

Hi, I posted here about 2 years ago when I was first diagnosed with Graves. I would like to say first off, this board is a Godsend! Thank you all!

I went on Metham.. (Tap) for a year and went extremely hypo. I did the whole self medicate thing, I’m better thing, don’t like the doctor thing… everything! I know stupid. For the last 6 months of that time I followed doctors orders. However I was almost comatose by the end of that year I was so hypo. I was trully suicidal and could not function. That was Christmas 2004.

I switched Endo’s and he did blood work in January- His first words were STOP taking the Tapazol completely immediatly. I never took another pill and felt better within a few weeks. He said I was in remission.

A couple times since then I felt hyper but he said my numbers were within range- high but ok. I didn’t feel horrible so I let it go.

In the last few months I have gone hyper drastically and quickly. First I saw my primary who said “Your numbers are high but not high enough to justify your symptoms. Here take paxil.

I went to see my endo with those numbers and he said pretty much the same thing, maybe a low dose of tap but lets do a new uptake scan and recheck numbers because I want to check a few other numbers that your primary didn’t check. He felt that with my numbers just a little higher then last time it was gradual, I insisted nothing gradual was happening to me.

I saw him today, 4 reallly long weeks later. He said “Your numbers are up Significantly in just a few weeks, your thyroid is working overtime again” We need to get your numbers down. I felt like saying DUHHHHHHHHHHHHHHHHHHHHHH

I swear my family and my boss think i’m a lazy B### and should just get over it. I look fine to them.. Except for the fact that my body is covered in open wounds because I keep breaking out and nerves make me scratch. “so stop scratching”

Sorry this is so long, but I kind of need to hear someone tell me i’m not making this all up. My husband didn’t even ask me what the doctor said, i’m sure he is tired of hearing me whine. He is great about helping me but he is not a communicator and does not understand, he is just a nice guy who would do whatever I asked even if he doesn’t understand.

I have rai scheduled for Tuesday and i’m scared. I’m afraid of the tapazol because it maid me so hypo, but i’m also afraid because rai is gonna make me hypo forever… right? I know pills for life to regulate but I don’t know if I can take going hypo like I did last year. It was really scary. And i’m already a basket case…

ok, mostly venting I guess… i’m sorry, it’s 3:30 in the morning, I can’t sleep- but i’m tired- but I’m crying – and my brain won’t shut the heck up. Hubby is snoring blissfully and I want to punch him.. lol.

thanks for listening.
Debra

[Anonymous]

#1077018

Hi, Debra:

I know it is horrid when you feel so ill and nobody around you understands that you are really SICK! That was my situation, too. I didn’t “look sick”, so everyone thought I was just “depressed,” or a “hypochondriac.” It was probably the most frustrating time of my life.

Laura gave you some good tips (printing out FAQs), and you could try that, or you could get one of the simple books on thyroid disease and give it to you husband with chapters marked for Graves/hyperthyroidism. It might help.

As for RAI. Yes, you do go hypothyroid, “permanently” as you say, but do not expect to feel the same way you did before. First, the way you felt before might have had something to do the ATDs as well as going hypo. But most importantly, you had to “ride out” that hypo period, with no help. This time around, your doctors will provide you with replacement hormone to bring your thyroid hormone levels up to normal levels.

I do have a word of caution however. I think part of the problem we patients have when it comes to the treatments is that we expect too quick a recovery from aberrant levels of thyroid hormone. Thyroid hormone is used throughout the body, in just about all of the cells, so when the levels are completely out-of-whack nothing is working properly. That holds true if the levels are significantly too high, or too low. Once we get back to normal levels of hormone, however, we do not feel instantly “normal” again. Our bodies need time to heal. The image I was given long ago was that being hyperthyroid is, to the body, like being hit by a metabolic semi truck. It messes things up for a while. And we need time to heal, to recover if you will. So try to wrap yourself in a cloak of patience when you have the RAI. Look for “progress”, measured in small steps. We DO get well again. The replacement hormone DOES work. But it takes some time.

Wishing you good luck with your treatment, and good health soon.
Bobbi – NGDF Online Facilitator

[Anonymous]

#1077019

I was hoping I would be one of the 5%(according to my doc–factoring in my age, etc.) who go into remission. I’ve been on tap since November, and do very well on 10 mg a day. My endo suggested that I try cutting back to 5 mg every other day, 10 mg every other day. I did, and I soon started back with mild tremors and two months later my T4 numbers were too high.

Back to 10 mg…I’m thinking that if I can’t get on the lowest dose of tap, I probably don’t have much chance of remission.

Have you heard anything about the dose of ATD, and the chance of remission?

I’m leaning toward radiation after vacation in June, unless I find some new information that gives me some hope for remission.

Thanks…

[Anonymous]

#1077020

The issue of whether or not you achieve a remission involves antibody levels. It is an antibody that is causing your thyroid to malfunction. Antibody levels are known to rise or fall for no well-understood reason. The drug you are on is a chemical block to the production of thyroid hormone. By taking it, you introduce a chemical into your body that interferes with the chemical process by which thyroid cells take iodine and make hormone. So the dose you need to take is the dose that interferes with enough hormone production to keep you from being hyperthyroid, but doesn’t interfere with so much that you become hypothyroid. It does nothing to cause remission, no matter what the dose. The dose you need to take might fluctuate over time (because antibody levels can change). If your antibody levels do drop, it might be possible to go off the drug for a period of time. IF it is a long-enough period of time (technically a year or better) then it is called “remission.” But remissions are, by definition, temporary. The antibody levels could rise again, and make you hyperthyroid again.

None of our treatment options affect antibody levels, unfortunately. In the course of time, the most elegant treatment will be one that can precisely interfere with the specific antibody that is making us ill, without affecting any other antibodies (whose presence we need). Medical science seems to be a ways away from that elegant treatment. But the treatments available to us now can make us well and healthy again, so that is what we have to focus on. And, indeed, be grateful for.

Bobbi — NGDF Online Facilitator

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