[DianneW]

in reply to: Candida and thyroid medicine #1072827

Specifically what kind of thyroid medicine are you referring to, the methimazole you are on?

The bottom line is that question is one that any of here could give an educated guess at answering, but your doctor is the best source of information. In the first place you would need a doctor’s opinion as to whether you really do have a candida infection, and then you could determine the cause.

Best wishes,

[DianneW]

in reply to: Torn retina #1072834

I’ve never heard of a torn retina being related to Graves’ Disease, nor have I seen it written about in the literature. Have you asked your doctor this question?

[DianneW]

in reply to: after RAI, going off meds, healing myself #1072875

In that study the average dose was 7 milicuries, which is small, and the actual number that wasn’t hypothyroid 25 years later was 18%. These days most people receive larger doses. Have you checked to see what dose you received?

Besides the damage from the RAI most of us have ongoing damage from the thyroid antibodies. A large percentage of people with GD become hypothyroid in time even if they haven’t had RAI as a treatment. So while you’re correct that you most likely have some thyroid tissue remaining (most of us do), if you had enough to sustain you without replacement hormone, your TSH would not have risen to begin with. I can’t imagine on what basis you think it’s even possible for the thyroid to regenerate at this point. This logic is much like suggesting a diabetic could regenerate his pancreas if he stopped taking insulin.

I have a personal story about this. Last year one of my cousins didn’t come to the family picnic. Her sisters told me that she had been diagnosed with bipolar disorder. I questioned them about her because I’d long suspected her of having Graves’ Disease because of her eyes. I’d even talked to her about her eyes at one of the picnics. They told me she’d had surgery on her eyes a few years ago to get rid of the bags around them (apparently after I’d talked with her).

To make a long story short, I questioned them about whether she’d ever had her thyroid levels tested. They weren’t sure, but told me that about 15 years prior she’d taken some kind of radioactive pill for her thyroid. I asked if she was taking any kind of thyroid replacement hormone, and they said she wasn’t. So I urged them to get her in for a thyroid test right away. The results came back and she was severely hypothyroid. Apparently she had not understood when she had RAI that she had to have her thyroid levels monitored. She thought she was cured of her thyroid problem and that was it.

In the meantime, she has developed a severe case of high blood pressure and heart disease, and she’s only 55. She had lost her job because of poor mental/emotional function. Her thyroid had apparently been okay for a number of years before gradually becoming hypothyroid, but at least in her case it didn’t regenerate by not taking replacement hormone.

So you can see why this idea doesn’t appear like a good one to me. It’s your life and your body of course.

[DianneW]

in reply to: after RAI, going off meds, healing myself #1072873

QueenMe, research shows that regardless of what dose of RAI people take, over time the thyroid will continue to die out until everyone who had it will be hypothyroid. The cells that weren’t destroyed have been damaged with a premature-aging effect and won’t live a normal life-span.

If you allow yourself to remain hypothyroid for a long period of time then you may have damage to your heart and hardening of the arteries. This won’t be reversible if you allow it to continue.

I strongly advise you against what you’re thinking of. There is no evidence it has any chance to work for you.

[DianneW]

in reply to: Crazy tsh level #1072888

Do both of you take your replacement hormone pill at least an hour before eating in the morning so that there aren’t issues with some of it not being absorbed properly? Some foods and vitamins can be problematic, especially iron and antacids. I believe oatmeal is another. If you can take vitamins and other meds several hours later you are probably safe.

Also, are you certain that you’re not forgetting to take the pill some days? That’s very easy to do. If this is a possibility, then I suggest you get a pill box. That way you can tell if you’ve taken it because when you have, the pill will be gone.

Those are some common reasons for fluctuating levels.

[DianneW]

in reply to: My Husband has Untreated Grave’s Disease #1072997

I’ve sent you a private message. As Ski said, this is an urgent situation. You will need outside intervention if your husband won’t listen to you. I’ve alerted Dr. Patterson to this situation since her training and experience are so well-suited to advising people how to proceed when problems like this occur.

You’re doing the right thing to look for help. I know that spouses can be stubborn; especially ones with Graves’ Disease. (I know because I AM one!!) Going to doctors does get old, and I understand the kind of frustration that would lead to his choice to essentially pretend Graves’ Disease doesn’t exist. Unfortunately, that choice will eventually be fatal, and we can’t let him do that to himself.

Hang in there. You’re not alone!

[DianneW]

in reply to: Freakin Out…BIG TIME!!!! #1073051

The trouble for Buttamama is not having access to a free clinic or having the resources to pay for a private endo. That’s why she has been seeing doctors in the ER every few months just to get prescriptions for PTU, with no real management of her levels, which has led to over-medication and thus her current hypo state.

I have asked Jake to help find resources in Florida, but he’s under the weather with his shoulder surgery right now. Dr. Nancy Patterson has also lived in Florida and probably is familiar with resources there. Nancy, can you help? (I’ll send email to her on this.)

[DianneW]

in reply to: sinusitis #1073085

When our thyroid hormone levels aren’t right we are more susceptible to infections. Hypothyroidism in particular causes a propensity to infections. (For what it’s worth,my vet said this is true even with hypothyroid dogs.)

This is something I have in my own history as well. Like you, I had sinus infections that began about the time my thyroid levels were being adjusted following RAI and became severe and chronic. At the time I asked my ophthalmic surgeon if this was related to my thyroid eye disease and he said it wasn’t, but I think now a link is being recognized.

In any case, I suggest you be careful that your thyroid levels be closely monitored so that you don’t remain hypothyroid for any length of time. Other than that, make sure you consult the most knowledgeable doctors you can find, and get second opinions when necessary. Also, if surgery is suggested at some point in the future, be careful what you allow someone to do. Sometimes it can make the problem worse.

I wish you the best.

[DianneW]

in reply to: Family Education Material #1073150

The GDF new website isn’t functioning quite yet.

There are some brochures about Graves’ Disease and hyperthyroidism (and treatments) at the American Thyroid Association website, http://www.thyroid.org If you don’t like those, there are some guides you can print out at the Thyroid Foundation of Canada’s website:
http://www.thyroid.ca/

[DianneW]

in reply to: Can Stopping Steroids suddenly cause a thyroid storm? #1073125

This is clearly a question for experts. Sorry we can’t be of more help. I suggest if you have any reservations about what your PA wants to do that you get a second medical opinion before you have this done.

Best wishes,

[DianneW]

in reply to: Life insurance and Graves #1073160

I was refused the opportunity to raise my life insurance coverage amounts, and this was with the U.S. Postal Service, who was my employer until I retired. I was told that if I ever dropped my coverage I wouldn’t qualify to reinstate it because of my Graves’ Disease. When I told the agent that my Graves’ had been treated and that statics showed it wouldn’t shorten my life, he simply told me he had no control over what the underwriters did.

I had the same problem with health insurance. When I’d been on leave without pay for health reasons long enough that I had to use COBRA and purchase my own policy, by law they couldn’t refuse me coverage, but for an individual policy (just for me, not hubby) it cost well over $1300 per month. I was a year away from full retirement but had to go out on disability, and that was more than my pension.

The life insurance episode was at the beginning, before it was known that I would eventually become disabled with the eye disease, so this could happen to anyone.

[DianneW]

in reply to: New to GD, maybe. #1073277

Welcome, mrstheweav,

I can’t imagine why a doctor would tell you that you have Graves’ Disease and that there’s nothing you can do about it, in the same sentence. Graves’ Disease is a treatable disease, and in fact it’s usually dangerous NOT to treat this. The only thing I can think of is that perhaps your levels are low and he was recommending that you be monitored, but you didn’t mention that as his recommendation.

You are making the right choice to get a second opinion. Please let us know what you find out!

In the meantime, I’m sure you can find a lot of useful information by reading posts on this board. If you have any questions, just ask.

Best wishes,

[DianneW]

in reply to: Hair loss – I’m scared #1073243

Hyperm,

I lost hair in droves so I didn’t see how there could possibly be anything left in my head and it worried me to death! Still, my hairdresser assured me I had plenty left, and said the new hairs growing in gave me natural texturizing.

As much hair as I lost post-partum, I have to agree that the two conditions combined must be a nightmare for anyone! But wash your hair all you need to, because the new hair is ready to grow back in, and you won’t be bald, I assure you!

I’m more concerned about your general well-being. I know you’ve been through so much, but if your meds aren’t controlling your levels this is dangerous. I’m concerned about the side effects and what this is doing to your emotions. You’re not thinking entirely clearly. Keep in mind how stable you normally are. I’m sending you a private message. You’re going to be okay.

[DianneW]

in reply to: Eye Problem Post RAI? #1073220

Hi Amy,

I know this has to be scary for you. I think you know the only answers you’re going to get are going to be when you have him examined, unfortunately. I really hope this turns out to be a false alarm, but if it’s any encouragement, studies show that for people who don’t have pre-existing TED any changes caused by RAI will be mild and self-limiting; specifically, at the end of a year there will no longer be any significant symptoms.

Keep us posted on what you find out!

[DianneW]

in reply to: Hello #1073264

Becky, I hope you will consider joining us next October at the Graves’ Disease Foundation Patient and Family Conference, the weekend of October 16-18 on the east coast, location soon to be announced. It’s the greatest support group ever for getting together with others who are going through the same emotions, and for receiving encouragement from those who have come out the other side. You’ll be able to see people like Maria who’ve had the surgeries and look like themselves again. I went to my first conference about a year after my diagnosis, and seeing people who’d had the eye surgeries and receiving encouragement from them was one of the best parts for me. I also enjoyed being in a room full of people who looked just like I did.

Maria, I hope you will come too! You sound like someone who can be of encouragement to others. I’m glad you’re doing so well now.

[Author]

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