[Bobbi]

in reply to: 13 years later, now what? #1075446

Just to add something to Ski’s last point, this summer my local pharmacist "goofed’"- TWICE- and gave me generic replacement hormone instead of the brand name that my endo insists on. It becomes automatic if they are not careful, because insurance companies generally demand that we use generic. NEvertheless, because I had difficulty getting regulated, I insist upon being given a brand.

If you shift from one brand to another, your endo would have you come in about 6 weeks – 3 months after the switch to make sure that the dose you are on is appropriate. But your pharmacy could buy different "brands" of generic medication, so you might be switched without knowing it if you are on the generic. That, at least, is the rationale for insisting on a "brand" as far as I know.

Bobbi – Online Facilitator

[Bobbi]

in reply to: Graves….RAI….hypo….now this! #1075453

OK — IRon supplements and iron skillets:

Iron is known to bind to thyroid hormone in the digestive track. (Is it track or tract?) anyway….. If you are on thyroid replacement hormone, you should not take in any iron or calcium or vitamin preparation within about 4 hours of taking y our replacement hormone. Once the replacement hormone has been absorbed into the blood there is no problem, but taking it too close to your morning pill has the potential to throw your replacement dose off.

Bobbi — NGDF Online Facilitator

[Bobbi]

in reply to: Choosing Thyroidectomy on Purpose #1075733

For a drug to be called Class D there has to be evidence of potential harm to the fetus, but it is thought that the potential benefits outweigh the risks. If a drug has been shown to cause abnormalities in the fetus, with the risks outweighing the benefits, it would be classified Class X.

The reason why PTU is the antithyroid drug "of choice" in pregnant women with hyperthyroidism is that it crosses into the placenta into the baby in smaller concentrations than does methimazole. So it has a somewhat smaller chance of harming the baby than methimazole does.

The decision-making about what treatment to use, when pregnancy issues are involved, therefore, is complicated. If you are already pregnant when you are diagnosed with hyperthyroidism, RAI is eliminated as a choice, and the options are PTU or surgery. If the dose of PTU that a patient would need to be on to keep them in the safety zone is too high, surgery might be recommended, if it was safe for the patient to undergo surgery.

If you are NOT pregnant, and are contemplating what treatment to do, then RAI comes back into play as a third option. You need to evaluate how you, personally, feel about taking a drug during pregnancy. Would you feel better about taking PTU or about taking thyroid replacement hormone (which is chemically identical to the body’s own thyroid hormone).

Obviously, you need to discuss the options at length with your doctor. You might also find a pediatrician (if you do not have one already) and discuss the options with him/her, as well. That way, when you make your choice, you will be more at peace with the issues while you are going through your pregnancy.

I do wish you well.

Bobbi — Online Facilitator

[Bobbi]

in reply to: A little more about me and one more ? #1075466

Hi, Tracey:

I do not know the answer to all of your questions, but I can try to shine a bit of light on the one about stress. Stress is known to cause illness in everyone. It does not matter if it is good stress (like having a baby) or bad stress (losing a loved one) or job stress or whatever. Stress puts the body under siege and we often get ill — colds, flus etc. come much more easily to us in times of stress.

It has been suggested (as a working hypothesis) that "major life stress" can be a trigger for Graves. Many of us can point to a specific major stress issue in our lives right before we became symptomatic. For example, I first became aware of symptoms as we were rebuilding our house after Hurricane Andrew. But, not all of us. So, it’s not necessarily a "cause" (there probably has to be a genetic predisposition), but it may be a catalyst for the active phase of the disease.

Now a caution: When some people hear that stress is a contributing factor to the development of Graves (or other diseases), they start beating themselves up, thinking/saying things like "I should have handled the stress better….." or words to that effect. Don’t go there. You did not do this to yourself. Everybody goes through stressful situations — all the time. Fretting about not feeling stress when you are in a situation where it is perfectly normal to be stressed only puts you under MORE stress. It is, sometimes, possible to take better care of yourself during times of stressful times. For example, we’re heading into the holidays which is a good example of "good" stress for most of us. But, when you are ill to begin with, it pays to prioritize, conserve energy as much as possible, and work out ways (in advance) to ENJOY the holidays not wear yourself out. We can make sure to get some exercise (which relieves stresses), get more sleep, etc. But we cannot, ever, avoid stress altogether. And sometimes, as in the illness or death of a loved one, we simply have to go through the awful time rather full of stress.

So, take a deep breath, and try to not to fret too much about what you still do not know. If your doctor does confirm the Graves diagnosis, know that it can be a hugely positive thing. Graves is very treatable.

I do hope you are feeling better soon,
Bobbi – Online Facilitator

[Bobbi]

in reply to: Graves Eye Disease #1075482

One of the best-received programs we had at a conference long ago was on make-up techniques. It made such a difference in morale.

Bobbi — NGDF Online Facilitator

[Bobbi]

in reply to: Just diagnosed with graves. #1075513

Of course you are scared. I remember vividly how truly awful I felt before I was diagnosed, and I was 52 at the time. And there is a very good reason why you feel so awful right now: the thyroid controls cell metabolism in just about every place in the body. When thyroid levels are out of whack, every single body system that depends upon thyroid hormone is "broken." I like to compare hyperthyroidism to being run over by a metabolic "Mack truck."

And we DO get well again if we get effective treatment soon enough. The good news for us is that there are effective treatment options that can get thyroid levels under control again. Once you get your thyroid levels controlled — by whatever means you and your doctor work out — your body will start to heal. When I was diagnosed, I could not climb stairs; now, I spend my summers in the Sierra Nevada mountains and spend a lot of time hiking the trails. I don’t have the tremors any longer; nor do I experience the heart palpitations. The weakness is gone. The nervous anxiety is gone.

There are several good books which can give you information about how the thyroid works, and what the treatment options can do for you. It can help to do some research so that when you talk with your doctor you understand what is being recommended, and why.

And, if you have any questions about issues, we can try to help. We won’t tell you what to do, but we can answer a lot of questions about what is going on and what various terms mean.

I do hope you are feeling better soon.
Bobbi — NGDF Online Facilitator

[Bobbi]

in reply to: Graves Eye Disease #1075480

I no longer have active eye disease, thank goodness, but I do empathize with your current ordeals. When our looks change, it is very hard to feel OK about ourselves.

Unfortunately, when we no longer feel OK about ourselves, our behavior can change. My mother, who had the eye disease as well, withdrew, wore only dark glasses when she went out, etc. It was ironic to me because she had always talked about inner beauty being more important than outer looks. So, I actually got two "lessons" from my mom, and they were both helpful. The first is that inner beauty matters the most, and the eye disease had not changed who I am as a person. The second was that withdrawing, becoming shy, allowing yourself to feel freakish over something that is totally beyond your control, is NOT helpful. Withdrawing did not help my mother’s moods, her sense of well-being, or her relationship with her friends and family. It diminished the quality of her life.

We only get one life. So, I wore a patch, because prisms did not correct my double vision. I thought about (but did not pursue) "color-coordinating" my patches for my outfits. I went to the cosmetics department and asked for "industrial strength" make-up and laughed with the sales clerks who tried to help me find the right concealers, etc. I made faces in front of the mirror, and discovered that I looked much, much better when I smiled. Not good, mind you, but "better." (And, yes, I also wept a lot, and said the Serenity Prayer a lot, just like lots of other folks who get the eye disease. )

I truly encourage you to "forget" how you look right now. The disease is a horrible trial, but it does end and often there are surgical procedures which can restore our looks. I’ve met lots of people who had horrible eye disease, and were treated and "fixed." They may not look like they used to, but they look (to me) terrific — their eyes look normal to others. Try, one day and one step at a time, to be the "real" you, regardless of how you look. I think you will find, as I did, that friends accept the patches, or the heavy concealers, much more easily than they accept being shut out.

Bobbi — Online Facilitator

[Bobbi]

in reply to: Need help.. need to choose between 2 RAI and surgery #1075569

Just one thing: no one, that I know of anyway, has had an endo do the thyroidectomy. Everyone I know who had their thyroid surgically removed went to a surgeon whose specialty was removing thyroids.

Bobbi — Online Facilitator

[Bobbi]

in reply to: Need help.. need to choose between 2 RAI and surgery #1075567

I assume that you have discussed the information that you found on the web with the endo that you like? If not, you should do so. There is both good and bad information out here on the web. While the web can provide you with some really good information, it can also burden you with garbage information, and if you have a doctor you trust, that is your best resource for weeding out the bad information from the good.

RAI and TED: the best study I know about this issue came out about 10 years ago in the New England Journal of Medicine. It was a January issue. Anyway, in a nutshell, the research showed that in approximately 16% of RAI patients there was a "temporary" worsening of the eye symptoms (TED). The researchers saw (if I remember correctly) an immune system response after RAI, and if antibody levels go up (for whatever reason), then symptoms of an autoimmune disease will become worse during that time. The same study showed that a concurrent course of treatment with prednisone eliminated any temporary worsening of the eye symptoms after RAI. Patients who already have significant eye disease, therefore, would need either to choose surgery to remove their thyroid, or take prednisone around the time they did the RAI. The rest of us probably would have more risk from taking the prednisone than the 16% risk from the RAI – but that would be for our doctors to decide.

The only "fertility" issue I know of related to RAI involves the one you already know about — not using the eggs closest to maturation (i.e. waiting through six months or so of periods before trying to conceive).

There are fertility issues associated with uncontrolled hyperthyroidism (and untreated hypothyroidism), so either you need to be able to have "controlled" thyroid levels on PTU (which you say you have not achieved), or you need to remove some thyroid.

If your doctor "won’t hear of" surgery, you need to be very careful to understand why. There could be important reasons for you, personally, not to try to undergo the surgical removal of your thyroid. For one thing, surgery can be more dangerous if hyperthyroid levels are out of control. So, please be sure that your doctor’s bias against surgery is "general" rather than specific.

I know this is a difficult time for you, and I do wish you good luck with your decision-making process.

Bobbi – Online Facilitator

[Bobbi]

in reply to: HAIR LOSS #1075563

When we are ill, for whatever reason, our hair and nails can suffer. Nutrition resources are allocated first to essential systems in the body; hair and nails get nutrition last. So they are the first signs of ill health, typically, and the last parts of the body to recover.

If your hair is falling out in droves, it could well be that you have some type of imbalance going on, or some other illness. With Graves, our hair tends to fall out in chunks if we are hypothyroid. But there could be other reasons for the problem. Your doctor is your best resource for this information.

If you have not had your thyroid levels checked in a while, now would be a good time to see your doctor about that. (As long as you have a thyroid, the amount of methimazole you need can change from time to time, and if you are getting too much, or too little, your thyroid levels will be out of whack.)

Bobbi — NGDF Online Facilitator

[Bobbi]

in reply to: Hyperthyroidism vs. Graves #1075666

I’m sorry that there is so much confusion for you, Lynne.

I thought I might try to cut through the confusion a bit — hopefully it will help. Basically, hyperthyroidism is diagnosed by a blood test. That test shows that there is a suppressed level of Thyroid Stimulating Hormone (TSH) coming from the pituitary. When the pituitary detects too much thyroid hormone, it lowers it’s production of TSH in an effort to lower the level of thyroid hormone. So, if you had a blood test that shows low TSH (and high levels of thyroid hormone, if those were tested, too) then you are hyperthyroid.

Unless your hyperthyroidism is caused by an actual infection (which your immune system would fight), it typically does not matter what the cause is in terms of treatment options. The treatment options for any cause other than infection are 1) antithyroid medications or 2)removal of some of the thyroid (either by RAI or surgery). For individual patients, doctors may recommend one treatment over another for specific reasons. Just because there are "options" in general, it doesn’t necessarily mean that every patient could safely choose any of the options. So it is important to talk with your doctor about your situation and why a treatment has been recommended over another.

The most important thing for you to focus on right now is how best to get your thyroid hormone levels well-controlled. Your doctor will have given you a recommendation. If you don’t like it, you could get a second opinion. Many of us go on antithyroid meds during this decision-making time so that while we are trying to decide on a more permanent choice, our bodies are (hopefully) protected from too much thyroid hormone.

I hope this helps, and I wish you good luck with your decision.
Bobbi — NGDF Online Facilitator

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