[DianneW]

in reply to: Joint Pain??? #1074569

Before I was diagnosed with Graves’ Disease I thought I had arthritis because I had pain in many of my joints. In fact, my endo tested me for rheumatoid arthritis, and when the test came back negative he told me that it was probably just the thyroid imbalance causing the joint pain. Fortunately he was correct, because it gradually went away when my thyroid levels were normalized (though I had more joint pain later on when I was hypo).

This doesn’t mean that’s what is going on for you, but I thought you’d want to know it’s a possibility. There are so many different possible symptoms for people with hyperthyroidism that not all of them make it in the patient books that most people read. I also had thyroid neuropathy, another uncommon symptom that isn’t ever listed. I don’t know if I had some of the unusual complications because I had the disease many years undiagnosed, or because I was just "lucky", but it took months of normal thyroid levels before some of these problems went away. It wasn’t an immediate "cure" when my blood tests showed normal. I gradually got better over time.

Always talk to your doctor about these symptoms and make sure he’s aware. I hope you feel better soon.

Dianne W

[DianneW]

in reply to: Orbital Decompression surgery stories #1074890

Hi elf,

I’ve had orbital decompression on both eyes. In my case it was done after surgeries on the eyelids had been done and other procedures (orbital implants) had been done to try to mask the proptosis.

Back in 1996 when I first had this disease, orbital decompression usually wasn’t done unless vision was threatened. That left me with disfigurement issues and exposure issues, and feelings of pressure and some mild double vision looking off to the left. I’d had multiple surgeries for eyelid retraction, but in time as the disease is in the cold phase, fibrosis (scarring) tends to stiffen the eye muscles and continuing damage can occur in some people. So in my case, even though surgery had been done, my eyelids continued to retract.

I wanted just what most people with Graves’ ophthalmopathy want; to look like I did before Graves’ Disease. I knew that was not realistic, but I also knew it was possible to have a better appearance and function of my eyes than I did at present. After the initial surgeries people told me I didn’t look bad, and it certainly could be worse; but I wasn’t comfortable and I wasn’t happy.

Further consultation with my eye surgeon at UCLA resulted in his opinion that newer procedures allow for decompression for cosmetic and functional indications now, not just threatened vision. In my case the eye muscles were not greatly enlarged and so he recommended a procedure that would remove a significant amount of orbital fat, while also removing some bone from the lateral walls of the orbit. This procedure is known for a very low risk of post-surgical diplopia. He used my photos in a study that was done on this procedure, and I’d be happy to email a copy of this study to anyone if they want to email me.

I woke up from orbital decompression surgery and the first thing I noticed was not pain, but a relief from the pressure in my eyes that I didn’t even know I’d been feeling. The surgeon was standing in the room asking how I was feeling and I told him this. He said that was a comment he heard frequently.

The pain from that surgery was minimal, compared to any of my other surgeries for reconstruction for this disease (I’ve had 8 others). It’s done more to help both my appearance and comfort than any of the others. I definitely recommend it for anyone who is serious about getting over the effects of this disease, but I also recommend giving ample time to see how much the disease will reverse on its own.

I’ve seen quite a bit of improvement in people with Graves’ ophthalmopathy if they’re willing to wait five or six years, and that improvement can give a much more natural appearance than any surgery can provide. Once the tissue has been disturbed with surgery there is a certainty that nothing will be totally normal again, so if you can wait a few years, it may be in your favor.

I saw Ski at this year’s conference after not seeing her for two years (or more), and was amazed at the amount of improvement in her eyes. I’m sure she still doesn’t look 100% as she did before GD, but had she chosen to have surgery prematurely, she could have had a lot done that might have been unnecessary.

So in retrospect I’m quite sure that had I waited a few years for my first surgery, I’d have had fewer procedures done and perhaps with a better cumulative outcome. My first surgery was before my thyroid levels were completely stabilized, and that in itself may have been a mistake. It’s now known that becoming hypothyroid is bad for the eyes, and I still had significant levels of TBII antibodies, another probable risk factor for active eye disease.

In summary, I’m really glad I had the orbital decompression done, and I’d choose the same thing in a heart beat. I’m wondering now though if waiting a few years to begin ANY surgeries wouldn’t have given me a better outcome on the whole.

These are issues you can discuss with your surgeon as how they might apply to YOUR case, and as always, be sure to get a second opinion if you are able to. There are so very many different perspectives available on these issues.

If I can answer any specific aspects I’d be glad to, as I’ve had a lot of different procedures done.

Best wishes,

[DianneW]

in reply to: New Thearpy News…… #1074942

You should be aware that even with thyroidectomy there’s a small chance that you can become hyperthyroid again. None of these three treatments is 100% effective, unfortunately.

Unlike with RAI, with surgery it rarely occurs that if a small amount of thyroid tissue remains, more can grow back from that remnant. Again, keep in mind this doesn’t happen very often, so it’s something you shouldn’t worry about at all. It’s good to know what can happen so if it should, you don’t waste time thinking it can’t be THAT (just as many people are never informed that the eye disease can rarely occur many years after the thyroid is successfully treated).

On the whole, surgery is usually a very satisfactory choice. People tend to get thyroid levels stabilized fairly quickly and avoid some of the fluctuations that can occur with the other treatments, which can lead to resuming "normal life" much faster. The antibodies that are associated with thyroid autoimmunity tend to slowly normalize once the thyroid has been removed. Normal thyroid levels and lower antibody levels have been shown to be associated with less severe eye disease.

The people I’ve known who had surgery got well again very quickly, and most of them ended up feeling like Graves’ Disease was no big deal once they got treated. I hope you’re one of those.

Good luck with your surgery and I know you’ll be feeling better really soon!

[DianneW]

in reply to: do you ever get your energy back? #1075183

I agree with the other posters. Have a good talk with your doctor, and be specific about your symptoms. If your doctor tries to tell you that the way you’re feeling has nothing to do with Graves’ Disease or your thyroid levels, request that s/he find the cause. If another cause is NOT found, your doctor should be willing to take a closer look at your thyroid levels and, as Ski suggested, determine whether a different part of the "normal range" might be more normal for you. In the event that you need to look closer at thyroid levels, be sure that s/he tests both your Free T4 and Free T3 levels. (My Free T3 was borderline low, and I didn’t ever have normal energy until I took a replacement hormone with both T4 and T3.) For many valid reasons, doctors don’t like giving both hormones, but in some cases it’s warranted.

If you have been having steadily changing thyroid levels since your RAI (needing a higher dose every time you see your doctor), then THAT might be part of your problem. It seems to be important to have stable thyroid levels before patients can begin to really heal and feel better. Once we’ve been on the same dose that’s right for us for six months or more, it helps a lot with how we’re feeling.

Best wishes in finding something that helps!

Dianne W
GDF Online Facilitator

[DianneW]

in reply to: graves/RAI/pregnancy #1075328

Just a comment in addition to what Bobbi said. Some people take even LONGER than 6-12 months following RAI for replacement hormone to be regulated. In these cases it probably wouldn’t be advisable to become pregnant until the patient attained a stable dose and had some time for her body to heal. In my case, this process took four years. For this reason, thyroidectomy is another option to consider for women who want to avoid the risk of waiting to start a family.

Dianne W
Online Facilitator

[DianneW]

in reply to: My Story and My questions…PLEASE HELP! #1075206

From my own experience, I can tell you that what causes hair loss with Graves’ Disease is basically CHANGES in thyroid levels! The health of your hair is a reflection of the overall health of your body. Changes in thyroid levels will make us feel bad ALL OVER. Any treatment option that causes either frequent or long-term changes in thyroid levels will cause havoc with our hair and with the way we feel in general.

Staying on antithyroid drugs might keep the thyroid levels stable, and your chances of achieving and maintaining a remission depend on many factors, including how knowledgeable your doctor is in managing ATD patients and how motivated you are to treat with that method. If you’re not that keen on taking ATD’s, and you think RAI makes more sense, you might be able to avoid fluctuations in thyroid levels by taking a large enough dose of RAI to destroy most of your thyroid quickly, thus avoiding leaving part of your gland to die out later from radiation damage and autoimmune failure.

RAI patients sometimes don’t feel well for several years following RAI because their dose of thyroid replacement is constantly changing, due to thyroid levels that keep dropping every few months. (I went through this myself, and my bathtub drain was full of hair every few months for the first four years following my RAI. I too have long hair.) If I was choosing RAI again now (which I wouldn’t, but that’s another story), I’d have a dose much larger than the 10 milicuries I had 12 years ago. My understanding is that it’s fashionable to give a bit larger doses these days.

A thyroidectomy is another choice that can stabilize levels very quickly. The people I’ve known who’ve chosen this treatment have felt well the fastest, with the fewest problems stabilizing levels. It’s important to find a highly qualified surgeon, and that can be difficult, living in some areas. This surgery isn’t done as often now, so fewer surgeons are as experienced as is essential to avoid the risks of damage to the nerve to the vocal cords or to the parathyroid glands.

Normally I’d advise you not to worry so much about your hair, but in this case as I said, the condition of your hair will reflect the general state of your thyroid health, so DO worry about your hair, and I hope you get well soon!

Dianne W
GDF Online Facilitator

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