[Anonymous]

#1052537

I know a lot of people includind me who had problems with ATDs at first.
Some people never get over the side-effects, but others do. If you are trying ATDs give your body a little time to adjust. Plus sometimes you will have to adjust your lifestyle a little, but it is usually worth it.
I see alot the point of stopping and starting the meds, which probably works too. All in all, most people should give it a little time, as long as the side-effects aren’t major.

Good Luck

Ron

[Anonymous]

#1154124

There could be several reasons for why you are feeling like crud these days, and your doctor would be the best person to sort out the issues and tell you WHICH of the possibilities is going on. But I can give you a thumb-nail sketch of what two or three of the issues are.

First of all, you could be sick with an infection. Obviously, the doctor would have looked for this. But sore throat, fever, etc. MIGHT be a sign of infection. It is not necessarily the likeliest possibility, but it is a possibility.

Second: There is a period of time, about a week or so after RAI, when we become more hyper than ever, briefly. It can definitely make you feel like the walking dead, with all of the hyper symptoms, including fatigue, at the strongest levels YOU’VE ever experienced. As the thyroid cells are damaged by the RAI, they pour their stored supplies of thyroid hormone into the body. Thyroid hormone has a “life span” in the body, measured in “half-life” terms (i.e. after a certain period of time, half of it is still there, working). T4 has a half life of 6.7 days. T3, the most potent of the thyroid hormones, has a half life of three-quarters of ONE day. So this period of heightened hyperness is self-limiting. The damaged cells are not making NEW hormone, just releasing hormone already created. Also, as the thyroid cells are damaged, it stands to reason that you will develop soreness in your throat area. HOW sore things get vary greatly from one patient to the next. In my own case there was almost no soreness whatsoever. But I know of others who had significant soreness for a while.

The third possibility I can think of is that you may be experiencing a lowering of your thyroid hormone levels in your blood, maybe even toward hypo levels.

Your doctor is the person to seek advice from here, as to what is going on, what your levels of thyroid hormone are, and whether the dose of beta blocker you are on is still appropriate. Please don’t be afraid to call and ask these questions, even if your doctor told you to “check back in in six weeks” or something. That period of time is an educated guess. And AVERAGE. How fast any of us respond to the RAI is individual. Some people respond quicker than their doctors expected, while others respond much, much slower than their doctors expected. The only way the doctor is going to know where YOU fit into the scheme of things is for you to stay in touch, asking questions about issues like the ones you raised here.

Wishing you good luck, and I hope you are feeling much better, soon.
Bobbi — NGDF Asst. Online Facilitator
Bobbi@ngdf.org

[Anonymous]

#1154125

Thanks for your response Bobbi. It’s nice to have some markers about what to expect and some possibilities to discuss with my doctor. Like I mentioned, I had RAI on the 10th, then I followed up on the 17th with blood work. TSH still untraceable with high T3 and T4 counts. It’s amazing how fast you get to know your body when you’ve got Graves! I’m hopeful the symptoms will mellow soon and life will start to seem a bit more normal! I am curious about one other thing. My thyroid problems started last summer when I had my first related attack of severe body hives, followed by anaphylaxis. I was seen by a leading allergist who found the thyroid problem. He clearly associated the hives with the hyperthyroid, however my Endo seems reluctant to make the same association. Are hives a rare reaction to hyperthyroid? And do they continue to return? I had originally tried tapazole to treat the GD, but started to react with hives to that. Doc said the hives will probably come and go when my thyroid is acting up. Is this a normal experience? Thanks again for your help!

[Anonymous]

#1154126

Kizzo, the only place I could find any association between hives and GD was in Sara Rosenthal’s book, THE THYROID SOURCEBOOK (p.35 — I think it was), and it was just two or three short sentences saying that hives have been associated with both hyperthyroid and hypothyroid is some patients. The other books, including the ones written by the endos, did not have a reference to hives.

Bobbi — NGDF Asst. Online Facilitator
Bobbi@ngdf.org

[Anonymous]

#1154127

My two cents on hives…my terrific allergist’s father has Graves’ (cool, huh?) and he said that hives can sometimes be associated with autoimmune diseases (and Graves’). Since the body is attacking itself and flipping out, it makes sense. However, the severe hives and anaphalaxis you describe sounds like an allergic reaction that you need to be very careful of triggering again.

I was asking my allergist because I kept getting these hives on my face that would come and go with no known cause. Now that I’ve had RAI and my levels are normal and I’m feeling good, no more hives on my face.

Hope you get to feeling better soon. I’m the hive/rash queen, so I feel for you. (I even got a rash and hives from three different thyroid replacement meds, but I’m doing great, now.)

Take care,
Melinda

[Anonymous]

#1154128

Kizzo

I too was seeing an endo AND allergist about body hives that started all the sudden. They started to frequent me 3 or 4 time a week after I was taken off Tap. to see if I would go into remission. My endo also was reluctant to say it was from the thyroid (I had read The Thyroid Sourcebook and found a little in there about it) but allergist was sure it was. I had no other allergic symptoms…After I was put back on Tap. to prepare for surgery I got them EVERYDAY!!!! (obviously was now allergic to Tap.) And without med. I would go into anaphlaxic shock. I dealt with this for about 4 months. I was so tired of going to ER and asked allergist to just give me the meds that they were shooting in me, in pill form so I didn’t have to keep going in. They gave me Benadryl and prednisone and I had to take them as soon as it started. The problem was, I would be fine when I went to bed and and would wake up scratching and with a swollen face and throat.
Now that I have had the surgery and my levels are mellowing out…I have NOT had the hives once. And now, endo agrees with allergist. He had said it was known to happen but wasn’t real common. So, hopefully there is light at the tunnel for you also.
Missy

[Anonymous]

#1154129

Good point… How about people who have not had success with PTU or other ATD’s or those who have not taken any ATD’s. Is the idoine treatment more difficult for them?

[Anonymous]

#1154130

I do not believe those circumstances would make it any more difficult for a person to undergo RAI. I can’t think of any reason it would be.

The only thing they must do is stop taking the ATDs for a period of time (usually a week or two) before the RAI so the ATD doesn’t block the RAI from getting into the thyroid. That’s all that would be different.

-Ski
NGDF Assistant Online Facilitator

[Anonymous]

#1154131

I think I’m desperately searching for reasons not to do the RAI. My nerves have got the better of me and I’m scared of the weight problem, I’m trying so hard to hold on to the weight I’ve lost and still have a good 50lbs or so to go. Even though I’ve been controlling what I eat, and exercising, I still seem to be gaining weight. Help!

[Anonymous]

#1154132

I don’t like the weight issues any more than anybody on this BB (I’ve already gained over 20 lbs.). But, I try to look at the most important issues – the damage that could be done to my heart – permanently – my muscles, bones, nervous system, brain!! Let’s get real folks – this is a killer disease if UNTREATED!
The RAI has been working for most people for over 50 years – it is not a new thing. So, I got into the solution – not being winey about the nit-picking stuff that is temporary anyway. If you ever went to an Oncology unit (like I am doing this week and next) for radiation, you would see folks with cancer getting the help they need – and not complaining – grateful there is a treatment for them!! I have Graves and Life is good!! Joy in NoGA mtns.

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