[Anonymous]

#1075954

It is great news that your blood test results have been stable for the past three tests (what? about four months?). That is a MAJOR first step in getting well again. Until you have controlled, normal levels of thyroid hormone your body cannot heal properly. Getting that control takes more time with some of us — but once it is stable, you should see progress. I know: it took me about two years, and still there was an occasional “glitch” for a few more. I kept my focus on the fact that I never felt “as bad” with those glitches as I had felt while I was hyperthyroid.

As to what you need to do when you don’t feel well, in general. There is one thing that we Graves survivors tend to do that isn’t completely helpful: when we go to the doctor we expect to see our thyroid hormone levels out of whack. We have had LOTS of experience telling us that feeling lousy has something to do with the thyroid. We know that thyroid affects the whole body. So, we are very likely — especially at first — to blame thyroid for everything. If it IS our of whack it is a simple fix (in our minds) to getting the problem done away with. So, it comes as a major disappointment to be told “It’s not your thyroid.” We have all had this experience, too. When you hear that phrase, “It’s not your thyroid,” your follow-up remark should be, “OK. Then what IS it?” You need to keep your doctor focused on problem-solving. Telling you what it isn’t doesn’t help. You need to know what is causing you to feel so run-down and fatigued. If you are getting proper nutrition, exercising appropriately (for your level of recovery), and you are constantly ill, something is amok and you and your doctor need to discover what it IS. I’ll give you an example. I had a run of problems in the year after my RAI. Nothing major, necessarily, but enough to cause a sense of things not right. Eventually, it was determined that my gall bladder was in the early stages of going amok. I eventually had it removed, and was amazed at how much better I felt. It had been a low-level problem — not causing major pain up to that point — but it had indeed been making me feel less than OK. So, we often have to look beyond the thyroid, even if the symptoms seem so very familiar. Getting your levels checked is a good idea. But if they turn out “normal” then you need to continue looking for other causes.

As for weight issues. And associated strength issues. These are tough. It may help to understand the process that is occurring. First, know that “being” hyperthyroid causes the loss of muscle mass. This often appears as weight loss, because muscle weighs more than other body tissues. But it is very bad weight loss: muscle burns more calories, even at rest, than do other tissues. So, in other words, muscle loss leads to a LOWERING of the metabolism. But, whether or not you gained or lost weight while hyperthyroid, there was some muscle loss involved. How much depends upon how long you were hyperthyroid. But it can be a significant amount, especially in the large motor muscles of the arms and legs. With this lower metabolism, we cannot eat as much as “normal” without gaining weight. When we regain stable levels of thyroid hormone, the muscle starts to come back. (And we see some weight gain — but this is GOOD weight gain. It involves RAISING the metabolism.) But it is not strong muscle until we have retrained it. We need to exercise wisely to regain strength and stamina in the muscle. It is extremely difficult to control weight issues with the fluctuations going on in muscle mass. And some of the weight gain is good weight gain. So, the issue becomes one of exercise and moderation in our intake of food. Both exercise and appropriate nutrition are really important.

I know that seeing those words, when you are feeling run-down is perhaps not what you want. But you might try — if you have not already — taking BABY steps to get back into activities that you enjoy, that give you exercise. (A word of warning: don’t even do these suggestions unless you doctor has cleared you for exercise.) Most of us try to get back into normal activities too soon, and we cannot do them, and it is frustrating. When I was evaluated by an exercise physiologist at the hospital after I was recovering from hyperthyroidism, I was told that I had only 8% of the strength of the average woman my age!! I had to think in “baby” steps and you probably do, too. Do some gentle stretches. Then take a daily, 15 minute walk. If the weather is bad, do it in you house. Or go to a nearby mall, and walk the corridors for 15 minutes. That’s it. See how you feel. If it wears you out, take it down to 10 minutes. If it energizes you a wee bit, keep it at for a few days, and then gradually increase it. Take some paperback books and “pump iron.” (Yes, I was so weak after being hyperthyroid, that 1 pound weights were too much, so I had to use books.) Gradually, you will regain strength and stamina.

I know it is hard, and discouraging. But you can conquer the obstacles. I hope you are feeling better soon.

Bobbi — NGDF Online Facilitator

[Anonymous]

#1020083

Hi all, hope you had a great December (and New Year of course). I saw my endo two weeks before christmas as I saw him every 6 weeks since Feb. until my lab results became stable. Well, he says they are stable and have been 3 times in a row. Then why the heck do I still struggle with my weight (yep, I’m still packing on the pounds after becoming hypo a few months after RAI) and am soooooooooooooooo tired and yep, I’m emotional too lol go figure that one. No, I’m not pregnant. It takes me so long to recoup from my fall down my stairs and now a cold I’ve had since before Christmas. I know these last two things probably dont have anything to do with Graves or being hypo now. Its just I’m coming up on 1 year in less than 2 months and well, I now regret having RAI because I feel worse. I honestly thought I would never say that but I’m starting to feel this way. My hair had stopped coming out in mid November and it was actually growing back *(I have little hair growth where it had fallen out). Well, its starting to fall out again, just not as much. Could be my age (I will be 40 in March) or who knows. I’m trying to not get discouraged but I have missed out on life and being active with my 3 kids and I would hate to go yet another year like this (my kids are 20, 13, and 7). I never want to do anything and my place could sure use some really good cleaning. Painting a room took about 6 months (and believe me, it is my son’s room and not very big) due to being tired tired tired. My endo tested for everything and well, they are all ‘normal’ as he would put it. I dont see him until the end of February (per his request). Is there anything I should do, or ask to be done?

Thanks all!
Kim

[Anonymous]

#1075955

Dear Kim,

You’re still relatively early in the process of recovery from Graves’ Disease and it’s a good sign that your levels have been stable for three visits in a row. That doesn’t mean they will be stable on your NEXT visit, however, and if you’ve noticed that hair is falling out again that could be a sensitive sign that your levels are indeed changing again. (That was always true for me.) And in fact, for me, the process of ever-changing levels continued for at least four years after my RAI, and until it was complete I didn’t feel entirely well. The first year was definitely the worst for me, though.

The whole concept that our symptoms aren’t caused by our thyroid simply because we have a blood test in the normal range is, in my opinion, flawed in the respect that it totally invalidates the actual experiences of scores of patients and leaves them without help or recourse.

While it may be true that the doctor has done all he can to restore the body’s thyroid levels to normal function, I don’t think it necessarily translates that the body is functioning exactly as it did before this disease began. Patients are not imagining that they don’t feel well, and this occurs in so many patients that it’s ridiculous for doctors to say that it has nothing to do with the disease or its treatment.

I’d personally like to see researchers put more energy into finding out WHY patients don’t feel well in spite of apparent adequate thyroid replacement rather than telling them there must be some other reason they don’t feel well. There has been some work done on this subject already, so the problem has been at least acknowleged.

The bottom line is that some patients with Graves’ continue to have problems following treatment, and doctors don’t know why. Graves’ is an autoimmune disease, and doctors wonder if the autoimmunity itself is responsible for continued symptoms such as fatigue. Patients who become hypothyroid after their treatment also statistically tend to gain more weight than those who don’t.

I would like to encourage you that in my own experience I began to feel MUCH better (more energized, less brain fog, etc.) once my thyroid was stable for a long time, and in my case I did need to add T3 to feel well, though current thought is against that now. (I take it in split doses to keep T3 levels even in the bloodstream.) A person who still has thyroid function of their own shouldn’t need T3 supplementation.

I had gained weight, but eventually over time have lost it again, and that has become easier. At the beginning it was impossible. Part of the reason may be that when we’re hyperthyroid we become used to eating differently. Try writing down everything you eat for a week and calculate the calories you’re actually consuming. Slim people usually don’t eat very much, and they do that consistently as a way of life. The idea is to make what you eat count (good nutrition).

Mainly I’m trying to validate your experience and give you hope that you will feel better than you do now. Be sure to let your doctor know how you feel, and as Bobbi said, if he tells you it’s not your thyroid, ask him to figure out what IS causing you to feel the way you are. Don’t let him simply pretend it’s not happening.

Best wishes,
Dianne W
Online Facilitator

[Anonymous]

#1075956

Hi there – Can absolutely relate at a different stage. Have been on Tapazole since December ’06, and have been finaly “stable” for the past 4 months, per my endo at 10 mg. Fuuny though, I can’t pull myself out of bed in the morning and weigh more than I did prior to the onset of Graves. (No, not due to a late diagnosis). But, I pursposely scheduled my annual physical with my internist this week coinciding with my blood work for my endo. My endo has told me to stay on 10 mg per my recent excellent results. I am awaiting my internist’s full blood work-up for a comprehensive picture of what might be happening with me. So, maybe you should think about a full physical if you haven’t already.

Feel better soon. Thanks for posting.
Claire

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