[DianneW]

in reply to: HOW BAD IS IT BASED ON TESTS? #1073600

Many people do take some time off work until they feel better, while others don’t. It depends on the job you have and how sick you’re feeling, and whether you can afford to take the time off. Doing so is certainly justified, and your doctor should approve it.

This bulletin board isn’t under construction—the Foundation website is, but it’s a separate entity. I’m not sure why you’d have to try several times before logging on. Perhaps there’s heavy usage in your part of the country or on your ISP? Is anyone else having trouble?

[DianneW]

in reply to: Hello #1073261

Hi Becky,

Wow, I do SO understand how you’re feeling! I’ve been down this road a lot longer than you have, but the story is so familiar. I remember the days when I could multi-task, but they are long-gone. Now I have a coffee mug that says, "Of all the things I’ve lost, I miss my mind the most." The ability to multi-task hasn’t improved, but people around me have learned not to feel hurt that I don’t hear them talk to me if I’m doing something else. I’m totally incapable of concentrating on two things at once. As for my memory, there’s a period right around the hyperthyroidism that seems like a fog, and people can tell me about events but I have to work hard to recall anything, even pet names or people I met during that time. My memory is somewhat better now, but I can still watch a re-run on TV that’s only 3 months old and really not remember most of it. It’s scary! The upside is that I don’t hold grudges.

The eye disease was the worst part for me. Besides being painful and uncomfortable, it was hard on self-esteem. People treated me differently, no question about that, and I reacted by withdrawing. In the last 13 years I’ve had 9 eye surgeries. After the later surgeries when results improved, I began getting more normal responses from people again, so they were definitely worth it.

It takes some time to feel better once you’ve been through all that you’ve just been through. I believe you’ll find that you’ll have more and more good days as time goes on. Most likely you’ll even feel improvement in your brain function.

A doctor at one of the GDF Conferences explained that every cell that’s formed while our thyroid levels are abnormal will be an abnormal cell, so until all those cells have had a chance to be replaced by new cells that were formed with normal thyroid levels, we won’t be completely healthy again. This can take six months at a minimum, probably much longer. The brain is very sensitive to thyroid hormone levels.

For a few years after my treatment I still felt somewhat crazy and very much intellectually impaired. The "crazy" is gone now, and I feel completely calm and sane. I still have some trouble finding words, and can’t do math in my head as I once could, but feel much less foggy-headed than I did at first.

To me it sounds like you’ve been through the worst and should be coming out the other side. Are you planning to have reconstructive eye surgeries?

Glad you found us!

[DianneW]

in reply to: Suggested Treatments? #1073252

You really should ask your endocrinologist if there’s a specific reason in your case that he recommended RAI right away, because it could be related to the severity of your case, but that still doesn’t mean you have to follow his recommendation. Often it tends to be the particular bias of the endocrinologist, but we all seem to have our own biases on treatment choices. Some endos send all their patients immediately for RAI without telling them they have other options, and others believe everyone should start with antithyroid drugs.

An endocrinologist at one of the Graves’ Disease Foundation Conferences told us she likes to start all her patients on ATDs if for no other reason than she wants them to make any decisions that might be permanent after their thyroid levels have returned to normal. I think that idea is a good one. Hyperthyroidism impairs the decision-making abilities of the patient, and it takes time to fully understand the implications of the disease and each treatment option.

I don’t think it’s far-fetched at all to hope to be one of the fortunate ones who will have a remission on ATDs, but we are all different and some people would rather get it all over with and get on with it. Some really don’t want to mess with all the meds and blood tests. It takes some motivation and desire for participation in one’s own wellness to be among the most successful at having a remission with ATDs.

Anxiety is a normal symptom caused by hyperthyroidism, and should improve as your thyroid levels normalize. Normally you will be able to wean off the beta blockers when your thyroid levels are normal. That’s up to your doctor. The blurriness of your vision may be caused by dry eyes. Try using artificial tears, such as Systane eye drops. Dry corneas can have reduced vision. But more importantly, have an exam by an ophthalmologist who can do a baseline in case you have further changes.

As for how much is on your plate right now, it may be good for your attempts at remission that you slow down and rest. Talk to your college about your diagnosis. They should be able to make provisions for you to complete the work later, or at a minimum to give you some kind of special help. Do what you have to do, but getting well should be first on your list (because you can’t take care of that boy if you aren’t)!

I realize what a shock this is. Been there, done that. But glad you found us. You’re not alone.

[DianneW]

in reply to: Update #1073393

Many endos take the position that since many people will eventually become hypothyroid, that justifies having RAI at the outset. I believe this is a personal question each patient should be able to decide for him/herself, and not the doctor’s decision to make.

Even if hypothyroidism was the eventual outcome, what about the years in between when the thyroid was able to provide normal amounts of hormone? I would be thankful for those years, and in the end would also be glad for a thyroid that could produce even part of my daily needs. A pill taken daily can never do exactly what a person’s own thyroid gland can do; specifically, micro-adjust to changing needs.

Some people aren’t able to maintain stable thyroid levels during those years, and that’s neither healthy nor comfortable. Under those circumstances it might be preferable to reconsider the options.

Once your thyroid levels are controlled on ATDs you shouldn’t have to worry about thyroid storm, unless your levels begin to go crazy again. That rarely happens once the levels are normalized.

[DianneW]

in reply to: Graves Effect on Lifespan #1073344

Death is rare and is mostly from cardiac events caused by thyroid storm, or hyperthyroidism that was untreated for too long, leading to a weakened heart muscle. Some people end up with congestive heart failure, arrhythmias, and other dangerous cardiac conditions. Poor compliance with therapy is one of the causes of death, even in young people with Graves’ Disease.

[DianneW]

in reply to: Hyperthyroidism with headaches and heart rate volatility #1073257

Partygirl, it depends on how high your levels are and your doctor’s judgment, but that amount sounds fairly typical.

[DianneW]

in reply to: Hyperthyroidism with headaches and heart rate volatility #1073255

These are common symptoms of thyroid hormones being out of range. What can you do, you ask? The best thing is to take your methimazole as your doctor has prescribed and get regular follow-up. If you are cutting back the dose of pills on your own and having these symptoms, you should not be surprised.

[DianneW]

in reply to: Autoimmune Disorders #1073349

I have Graves’ and Sjogren’s.

[DianneW]

in reply to: Treatments for Eyes #1073500

My eye puffiness was caused by fat from behind the eye being pushed forward into the skin around the eyes, which then attracted and held fluid. That happens for many TED patients. For me (as for Maria) it had to be removed surgically.

[DianneW]

in reply to: Graves Effect on Lifespan #1073342

There are studies on this subject. People with Graves have a slightly reduced mortality, but this increase in death rate is almost always within a year of the period of hyperthyroidism. So if you are successfully treated and survive for a year, your lifespan from there on will be pretty much normal.

[DianneW]

in reply to: Anyone that tried natural methods/diet? #1073651

Well said, James. This is exactly my own view on the matter.

[DianneW]

in reply to: Update #1073391

You can stay on Tapazole long-term, as long as you can be managed with a small dose. A recent study done by the European Journal of Endocrinology comparing treatment with RAI to methimazole over a teh-year period found that the safety and effectiveness are comparable. Dr. David Cooper did a review article on antithyroid drug treatment in the New England Journal of Medicine and his opinion also is that it’s safe. If anyone wants these articles for their doctors, email me at dwiley@Q.com

Side effects are always possible when you are taking ATDs, but they’re less likely on a small dose. If you were still taking the ATD when you became elderly you might want to reconsider as well, since an aging liver might be less able to handle drugs. It’s also quite possible that by that time you will become hypothyroid, since that’s a natural part of the disease process for a high percentage of people regardless of treatment choice.

[DianneW]

in reply to: How important is TSI level for decompression? #1073400

I don’t think TSI testing is necessary for a diagnosis of GD, just as Jake said, but the study Elf posted is consistent with other studies I’ve been reading about the relationship between the activity of TED and TSI antibodies. Most specifically, positive TBII (which are TSI) are correlated with TED activity.

My TBII levels were still high when I had several of my surgeries, and the surgeries caused a reactivation of the disease process. It makes sense that waiting for the levels to lower would be a good idea.

[DianneW]

in reply to: hi #1073382

What do you mean that the PTU doesn’t work? Do you mean it didn’t achieve remission? It should bring down your thyroid levels if you take it properly.

Besides RAI, Surgery, and PTU, the only other treatment is Methimazole (brand name Tapazole), which is an antithyroid drug similar to PTU. The main difference is that it doesn’t have a bad taste and you can take it once daily.

RAI does not poison your body, but it will no doubt make you hypothyroid. It’s your choice whether to take it or not.

The only treatments for GD are antithyroid drugs (PTU or methimazole), RAI, or surgery. You’re not alone in wishing there were other choices, but this is what we have. Fortunately, all of them work, and for this we can be grateful.

Best wishes in making a choice that you’re happy with.

[DianneW]

in reply to: Treatments for Eyes #1073490

Shelleyz wrote:hello,
my eyes are so swollen sometimes hard to see i just returned to work last week. I work in a grocery store and took 3 months off as i was so sick now that i am back the customers want to know what happened whats wrong lol i dont even know what to tell then????? I say graves and they say what? so what a eazy way to tell them? and the eye swelling how can i bring that down? i have a doctor whos so buzy not any time for me. Thank you , Shelley

Hi Shelley,

Wow, I understand the difficulty finding an easy answer to the question about "what’s wrong with your eyes". I too had a job working with the public, and had many different responses from people. Often people reacted to me negatively because they assumed from my facial expression that I was angry! (That’s a danger for people with severe TED.) Wearing sunglasses was a help to me in that regard.

I found that people’s attention spans for a long explanation about the Graves’ wasn’t very good, so I simply told them I had Graves’, which was an autoimmune thyroid-related condition causing the eyes to protrude, like the actor Marty Feldman and Barbara Bush. Most people simply said they’d never heard of such a thing. I said that I hadn’t either, until it happened to me. But one elderly gentleman I saw daily developed a crush on my eyes for some reason. He thought they were fascinating. When I had the surgeries he didn’t love me any more, LOL!

When you speak of the eye swelling and wanting to bring that down, or are you talking about your eyes protruding (proptosis) from the orbits, or are you talking about swelling in the skin around the eyes, or both (or something else)? How is your thyroid being treated? If you can answer those questions I might be able to give you more specific answers, but generally the eye disease will have a phase of 1-2 years (perhaps longer if you smoke) where the changes are active and inflammatory, and then settle down. After that the eyes usually improve to one degree or another. Other than keep your thyroid levels normal and avoid smoking, there’s nothing specific you can do to help the general course of the eye disease.

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