[Bobbi]

in reply to: Doc with Grave’s, getting RAI tomorrow #1169911

Hi, and welcome to our board.

The atenolol is pretty good at masking the symptoms of hyper in a lot of cases. The danger then becomes that the patient thinks that it has "fixed" the problem. But the beta blockers don’t cause of whit of change in thyroid levels, do not control the thyroid levels, so the "fix" is illusory.

I am sending hugs. I could totally identify with how you are feeling. My mom had Graves, and had RAI about 25 years before I was diagnosed. I had seen that the treatment gave her back her health. I was still crazy nervous when I went in for my own RAI.

Wishing you good luck, and health soon.

[Bobbi]

in reply to: Husband Trying to Cope… #1169631

Halbarad: It might help if you tell your wife that "some" weight gain once our thyroid levels go back to normal comes from returning muscle mass. With muscle mass weight gain we do not gain inches — only pounds. We lose muscle while hyperthyroid. This is very bad weight to lose, because having muscle lifts our metabolism, and we can eat more without gaining weight. When we get back to normal levels of hormone, muscle comes slowly back. That is GOOD weight to gain.

It’s very difficult — especially in the U.S. culture which seems to idolize women who resemble swizzle sticks — to gain any weight, ever. But knowing that muscle weight gain is a positive can sometimes help us through the process.

[Bobbi]

in reply to: Smoking and Graves Disease #1169366

Hi, MaryI,

I would like to reinforce what Shirley said about getting to an opthamologist, asap, to have your eyes checked. Losing color perception is not at all normal, and even though it was temporary, you need to find out why it happened (if that is possible).

As far as the cigar smoke — try to stay on the "upwind" side of things, if possible. I went to a bbq this summer, where the host cooked fish on an open pit fire, and the wind kept blowing that smoke into my eyes, and they were red for days. I hate to think about the particles that made there way into my lungs. But the eyes were really "upset" about the experience. ; )

[Bobbi]

in reply to: Getting Through this.. #1170036

Hi, Supermom:

There could be any number of things going on. Some possibilities:

1) The medication has obviously "worked" to interfere with production of thyroid hormone (dissipation of hand tremors and calmer heart), and the sudden drop in hormones is causing temporary symptoms of hormone change. Think of puberty, pregnancy or (if you are old enough) menopause. At all those times the simple change in hormone levels causes moodiness, crankiness, etc.

2) The dose of medication you are on could be enough to make you hypo, and need to be adjusted. There’s fine-tuning that needs to go on to get us on the "Goldilocks" dose: the dose that allows just enough thyroid hormone to be made to make us normal again.

3) Rarely, some folks get side effects from the drug even though it might be working properly. That can be harder to figure out, especially since other causes (like the ones above) have to be ruled out. I spent a month or more on PTU, and was "normal" but always felt awful, so I opted to have my thyroid remove. People here online warned me that I was wrong, it wasn’t a reaction to the drug, I would feel awful without my thyroid, etc. etc. They were wrong, thank goodness. So, for what it is worth, I pass that along to you. But, again, it isn’t the norm for people to respond badly to the drugs.

One thing to keep firmly in mind, though, supermom, is that there is no pill that makes us feel instantly well again. We spent time hyperthyroid, and that did ….for want of a better word…."damage" to the body. It takes time (months of time) at normal levels of hormone for our bodies to heal. It can be very frustrating. And, at a time when our hormones are making us anxious and impatient, we need to pull on all our resources to be patient — at least a little bit, if possible.

[Bobbi]

in reply to: Smoking and Graves Disease #1169362

Yes, I agree. Well said, Rebecca.

Also an ex-smoker (or "recovering nicotine addict"), and not an idiot.

Smoking is a hideous addiction. If someone you love is trying to quit smoking, provide support as needed. But badgering, prodding, pushing does not help when we are also hideously ill, and hyperthyroid.

[Bobbi]

in reply to: What should I ask my Endo at my first appt? #1169973

It sounds like you have made good progress in organizing your thoughts and trying to establish priorities.

Knowing your T3 levels isn’t really going to provide any diagnostic help. What the doctors look at during the scan that you had done is the location of the radioiodine that collected in your thyroid. Sometimes it collects in globs, here and there: this they call hot nodules (among other things). When it collects rather uniformly throughout the thyroid (the terminology used is "diffuse"), they diagnose Graves.

What type of precautions you might need to take after RAI depends on the dose you are given, and just how cautious the attending physician is. Some of the more extreme precautions you might read about on the web (which include, sometimes, overnight stays in hospital) are typically associated with thyroid cancer patients who have their thyroids surgically removed, and then receive huge doses of RAI (several times the dose we get) to make sure that every last thyroid cell in the body is gone. Since they don’t have the gland any more (due to the surgery), the vast majority of the RAI they ingest is eliminated from their bodies via urine, sweat and saliva. And there can be a significant amount of it, so, yes, the precautions that need to be taken are generally much, much more than we have to consider. Since you are doing good research, y ou might want to make sure precisely what precautions you would have to take, based on the estimated dose you would be given. While you wouldn’t be able to pick up your cat and hold him/her against your neck for a week, he/she might be able to sit on your lap, or next to you. Perhaps not, but if RAI is still in consideration, you could find out more precisely. I have pets, and I simply could not hold them up high on my chest for the first week.

I have several friends who have had their thyroids surgically removed. Once healing has finished, there is little to no scar visible: the surgeons typically have "tucked it" into one of the folds on the skin of the neck, and the line itself is no bigger than a wrinkle.

[Bobbi]

in reply to: Getting Through this.. #1170034

I think you need to evaluate your doctor on your own criteria, and not listen to the complaints of others. Unless those complaints involve serious malpractice issues. For example, "Old School" may mean that the doctor trusts scientifically proven treatment options to alternative suggestions, in which case the doctor is giving the patient the best treatment available, but the patient isn’t happy about not being able to experiment. It might mean something else, too — I could speculate all day. But the important thing is that you need to try to figure out the doctor on your own. I have an endo I consider fabulous, while others consider her to be a awful. She’s intelligent, pays attention, makes herself available to patients when needed. But she doesn’t have a warm and fuzzy "bedside" manner. I don’t care about the warm and fuzzy. I care about her listening and giving me thoughtful commentary. And while she may not be warm and fuzzy, she makes herself available to her patients, and that counts for a lot.

I understand how the office staff at can leave a horrid impression. Receptionists ARE from time to time frustrating. They are receptionists, not nurses or doctors (at least in my endo’s practice), not "professionals". At times it seems to me that they see their function as "protecting the doctor from those pesky patients." But, it is possible that your doctor has installed very "picky" rules about the way the receptionist behaves, in order to keep said receptionist from giving out bad information (because the person is not medically trained) and unintentionally hurting a patient. My endo has done that in order to (in her words) keep the reception staff from doing something "totally stupid."

So, again, if you can try to evaluate the doctor based on how he interacts with YOU and whether or not he provides you with what seems to be good,thoughtful caring doctoring, you will be better off. And, if you cannot get past the dragons at the gate, to talk with him, or get questions answered, tell HIM about it the next time you see him, and see what type of response you get.

[Bobbi]

in reply to: Success stories with RadioIodine treatment? #1169608

I hope, Lammie, that by "still hyper" you don’t mean that you are doing nothing. I hope you are on the antithyroid meds again. Because it is tremendously dangerous for you to allow hyper levels of thyroid to continue untreated. Right now you may think things are ok, but over time, untreated, too much thyroid hormone will debilitate you.

I’m sorry the RAI didn’t work to completely eliminate your hyper levels. In approximately 10% of the time both surgery and RAI fail to remove enough thyroid tissue to let us resume normal thyroid function (usually with supplementation from replacement hormone).

Be sure to watch things carefully, though. We have an autoimmune disease, and antibody levels rise and fall for no well-understood reason. So, while right now, your antibody levels are keeping your thyroid levels high, they could drop again, and you might find yourself hypo again, and in need of replacement hormone to keep you at the right level of hormone. Also, over time, the antibody attack can wear our thyroid cells and cause them to stop working properly. That again, might lead to hypo situation.

[Bobbi]

in reply to: What should I ask my Endo at my first appt? #1169969

Make a list of the questions that you have, that you would like the doctor to answer. Try to keep it limited to your most pressing concerns. We can have LOTS of questions, but our endos don’t necessarily have lots of time for us. Anyway, it is quite common to forget questions while we’re caught up in things at the doctor’s office, but it’s easier to ask them of the doctor than to try to get an answer from the office staff if you should call in later. And, one thing y ou may have noticed recently is that your memory is not as reliable as it used to be. While we are hyperthyroid, our brain is also affected, and it is harder to remember things, harder to concentrate.

A quick primer: TSH stands for Thyroid Stimulating Hormone. It comes from the pituitary gland, which acts as a kind of thermostat for thyroid levels. If the pituitary detects too little thyroid hormone, it raises its production of TSH to try to stimulate thyroid cells to make more hormone. Conversely, if it detects too much, it reduces its level of TSH to try to discourage thyroid cells from making hormone. When we have Graves, the thyroid cells no longer respond appropriately to the commands from the pituitary to reduce hormone production. So, it is very common in our early diagnosis for there to be little or no TSH detectable, and high levels of the true thyroid hormones, T4 and T3.

One thing you can do in the future is request a copy of your lab results to take home with you. It can be helpful to actually "see" it. The lab that does the test will give their range for normal levels, and you can watch your progress better that way.

I wish you good luck with your appointment.

[Bobbi]

in reply to: how does T3,T4 levels relate to symptoms? #1169977

Having T3 and T4 controlled within the normal range, over time, should provide you with symptom relief. It takes place over time, not all at once. That is one of the frustrating aspects of our treatments: they work, and work well typically, to give us back our health, but it never takes place as fast as we would like. I think it helps to look at progress, instead of some absolute sense of "normal."

[Bobbi]

in reply to: Getting Through this.. #1170032

Hi, Sassymom:

Upper eyelid retraction can be strictly related to thyroid levels — unlike the rest of the symptoms of TED. Many of us see it go away completely when our thyroid levels get controlled back in the normal zone. No guarantees, sadly, but you might see your appearance revert to your pre-Graves look if there is no actual protrusion of any significance going on.

[Bobbi]

in reply to: Getting Through this.. #1170028

Just to be on the safe side, gator girly, since you work in health care, I would suggest you get a second opinion about the flu shot. And, I will double check with my docs. Again. But what I’ve been told is that when we are healthy again, on replacement hormone (not ATDs, but replacement hormone) there is no contra-indication for the flu shots. My doctor is even advising me to get the shingles innoculation, which is the attenuated (live)variety. It may come down to a judgment issue: which is safest, the vaccine or the disease? Doctors will vary on judgment issues sometimes. Or there may be another reason in your case, that doesn’t exist in mine. Anyway, it doesn’t hurt to press the discussion a bit further to find out what the reasoning is, and whether it has any universal validity.

[Bobbi]

in reply to: Dumping already? #1169981

Typically we tell folks to expect the dumping "about" a week after RAI. Everyone is different, and it depends upon how quickly the thyroid cells are damaged sufficiently to release their stored hormone.

I hope you are feeling better soon.

[Bobbi]

in reply to: Getting Through this.. #1170025

The flu "shots" are made from a virus that has been killed. But there are some flu vaccination preparations that are sprayed into the nose. These are "live," typically. What they do with this type of vaccination is weaken the virus, making it incapable (supposedly) of causing the disease. But there may be a risk to some individuals with that type of innoculation, or preparation. I believe the shingles vaccination is, currently, of the weakened, not dead, variety. Anyway, when we are on antithyroid meds, like methimazole and PTU or carbamazole, we can have a lowered white blood cell count as a result of the meds. It isn’t typical. But to be on the safe side, live vaccinations have a big caution sign on them when we take these meds.

[Bobbi]

in reply to: RAI treatment #1170004

Your reaction is completely normal. We are so stressed while we are trying to make up our minds which treatment option to do, that we often find the results somewhat anticlimactic: especially with respect to RAI.

Keep in mind that in a week or so, you will be more hyper than ever when the thyroid cells start dumping hormone. It is only at its worst for two or three days, typically. But it can throw some folks off when they aren’t expecting it.

I hope you feel much better, and soon.

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