[Bobbi]

in reply to: I would like to introduce myself #1074618

Hi, Storm, and welcome:

I would like to add my tuppence (do they still have that in the UK?) to cathy’s comment about the words we use. Early in my diagnosis and treatment with Graves, Jake (who started this board and nurtured it for years) wrote a post about being "Graves’ Warriors." It helped me a lot to think of myself doing battle with, rather than suffering from a disease. I don’t think Jake intended the image I conjured up — that of a Valkyrie, horned helmet and all. But it works.

A friend of mine who is a psychologist heard me talk about hot flashes one day and said vigorously, "Hush! What the mouth says, the brain hears! Power surges, please. Power surges." I laughed, as she intended, but the same message as Jake’s came through. Our words to ourselves matter.

As to how far you should push yourself. We have no idea where you are in the realm of treatment, so the responses should be fairly general. First, your doctor has to tell you that it is OK to exercise. That is crucial. (Of course, given that your doctor doesn’t know much about Graves’, his OK might not be comforting.) If he/she says little to no exercise, then you could limit yourself to stretching exercises on the floor, or rocking in a rocking chair. (Yes, that rocker does make us use our muscles — albeit gently.) Otherwise, if it is OK to exercise, you need to do enough to energize you, not wear you out, and consistently increase the amount over time. I started out with 15 minute walks, and lifting smalll paperback books to increase arm muscle strength. (Truly) I gradually got to longer walks, and heavier weights on both arms and legs. The key is that you should end up– at least until you are well again — feeling more energy, not completely worn out. ONce you’ve managed to walk a couple of Ks on a regular basis without feeling like you need a nap, you could get back to other forms of exercise that you enjoy more. It is very important that we do exercise when we are given the go ahead. OUr muscles have gotten slack from the disease taking its toll, and they need to be restrengthened for us to feel normally peppy again.

Take care,

[Bobbi]

in reply to: Success rates for treatments #1074623

People who come to sites like ours, Lynne, are ill — typically they are NEWLY ill. In addition, there are also the folks who have, for one reason or another, had difficulties: additional autoimmune issues like the eye disease are common. So, the site is skewed on the side of illness, not health. The moderators here are, by and large healthy: it’s almost a requirement. There needs to be some balance. But we are, most definitely, outnumbered. ” title=”Wink” />

While it is smart to look at possible adverse side effects, you cannot allow yourself to be immobilized by them. Hyperthyroidism is significantly worse for you than any of the treatment options might be. It is the evil you know, at this point in time, and you might even be slightly comfortable with it. But evil it is, and over time, it will run you down.

So, what I know about the adverse side effects, is that approximately five percent of folks who try the ATDs have serious problems with them. There is a slightly higher number who have more moderate side effects. But the large majority of people who take the ATDs find they work to control their thyroid hormone levels. Sometimes the drugs do not work optimally to control thyroid hormone levels, and another option needs to be considered.

RAI and surgery work to eliminate hyperthyroidism in 90% of the cases. It is rare, in other words, to need two surgeries or two RAIs. That is particularly true, in the case of RAI, if your doctor goes for an ablative dose (meaning that you intend to kill off a majority of the thyroid.)

Synthetic thyroid replacement hormone is chemically identical to our body’s own T4, and it works exactlyi the same as our body’s own T4. Finding the right dose is important, because it IS thyroid hormone, so too much of it will make us hyperthyroid again, and too little hypothyroid. But at the right dose it works well. Yes, some people report problems getting regulated. I am one of them. It took two or three years to find a stable dose, because my thyroid levels kept changing (for some, unknown reason). But I can truthfully say that during that time I never, ever, felt as bad as I had while hyperthyroid, or on the ATD I had been given. Other people have different expectations, or different senses about that, but that is my (anecdotal) experience to share with you.

You truly need to make some type of treatment decision. Beta blockers help to protect your heart, but they only mask the other bad symptoms of being hyperthyroid. You are losing bone and muscle while you try to decide. Many of us go on an ATD, at least temporarily, while we are trying to make the decision. It usually does not present a problem, and allows us time to decide, without further damage to our bodies.

I do wish you luck. Make a list of the pros and cons if you will and look at things objectively as well as emotionally. It can help, although I know it is a hard decision.

Take care,

[Bobbi]

in reply to: Allergic to Anti-Thyroid Meds? #1074628

Reality is the pit, isn’t it? If you are allergic to both ATDs then you need to consider RAI or surgery to remove your thyroid. Those are our only alternatives. Allergic reactions typically only get worse, not better. Unless your doctor tells you that it is OK to continue on the drug, you must consider the alternatives, both of which can make you healthy.

I was not allergic to the drugs in the same fashion you are, but I definitely was made more ill on PTU. I chose RAI and was on the road to good health within two months. It isn’t worth it to prolong the disease just to avoid RAI or surgery. It truly isn’t.

[Bobbi]

in reply to: just need to talk #1074637

First off, we do in fact become more emotionally volatile while having the thyroid hormone out of whack. And yo-yoing. You absolutely cannot trust your emotional responses right now. They are not necessarily valid. Or if they are valid, they are often hugely out-of-proportion with the situation. Someone here on the board long ago told me she had found a refrigerator magnet that said "zero to bitch in 10 seconds." It is a reality. It doesn’t make it OK, however to batter our friends and family with these out-of-control emotions. We have to find a manner of coping with the emotions that doesn’t inflict hurt on those we love. This situation is not permanent: once our thyroid levels get back to normal, and our bodies have had a chance to heal, the emotional volatility subsides. The damage our hurtful behavior does, however, can persist. So it is absolutely in our own best interests to find a way to bring our emotions into closer relationship with reality as much as possible by recognizing our own huge piece of whatever problem is going on. WE are often the problem, in other words, not them.

One of the things that I would do when I felt the emotions roiling up was to back off and find a way to say an "I" message. I would flatly state, "I know this is not your doing, but I am so upset about…." or words to that effect, instead of "How could you not know that I wanted……" (That second one is a "you" message.) And then burst into tears. An "I" message does not attack the person directly, the way a "you" message does. It can make a huge difference in how the other person responds to the issue.

In addition to the "I" messages (which can help to deflect the emotions off the target), I would suggest that you consider getting counseling, if your insurance will pay for it, or if you can afford it. Counselors are trained to listen without taking offense. The are also trained at helping us to see who "owns" the problem. just because we get angry with someone about something does not mean that they are the problem: we might be the problem and being able to distinguish is hugely helpful.

Another thing that helped me and my husband was the book "Men Are From Mars, Women Are From Venus." This is a popular psychology book from about 15 years ago, that contains some golden nuggets of truth. While I do not buy into the whole "men behave in this manner, while women behave totally differently" as an absolute truth, the book did indeed describe aspects of my husband’s and my thinking that proved helpful. You might want to get it from the library. It’s an easy read, but it definitely gave me some insights into my husband’s behavior (and vice versa) which smoothed many a potentially troubled time.

I hope today is a good day,

[Bobbi]

in reply to: Normal Levels-Still feeling horrible! ADVICE???? #1074631

The best news in your message here was that the new endo is considering whether or not something else is going on. Truly. That shows that he/she is giving your symptoms relevance, and is continuing to think about things. That is crucial to good medical care.

And the one, main problem that a huge percentage of us have after successful GD treatment is to associate the symptoms that we felt before our diagnosis solely with GD. It is very normal to go back to our doctors and say our thyroid levels are off, and ask for blood work, and find out that they are fine (at least a lot of the time). It isn’t that these symptoms are not associated with GD, but that they can also be associated with other physical conditions. That is one of the reasons why it is sometimes hard for us get the GD diagnosis in the first place: our doctors were going through the long list of other possibilities before they hit on thyroid. After successful treatment the process has to work in reverse: If all of your thyroid numbers are truly within normal (and that means a complete panel) then you need to look for something else as the culprit.

With your symptoms developing so quickly after you completely stopped the methimazole, it is completely understandable why you associate the problem with the removal of the drug. You might be right, if the blood tests you were taking were not thorough (including T3 etc.). But if the blood tests were thorough, you’ve got too look for another reason.

[Bobbi]

in reply to: NO TREATMENT #1074659

You should get a copy of your blood test results — there should be no problem with that because they are, after all, your tests. Then, check the thyroid panel readings. Not that you (or we) can interpret these results, but you can tell whether or not the numbers are within the normal zone or whether they are outside of normal. The lab which sent back the report will tell you that. If the numbers are normal, watching for six months may not make a difference. If the numbers are abnormal, then get a second opinion reasonably quickly — probably from an endocrinologist although sometimes there is a waiting period to get an appointment from an endo. You do not want to wait six months if your lab numbers for the thyroid panel are abnormal.

In addition, you might make an appointment with an opthamologist to determine whether or not your eyes are being impacted by thyroid eye disease. It is slightly possible that your pcp thinks you might be developing the eye disease (in which case, waiting and seeing is standard practice) and its on this basis that he has given you the Graves diagnosis. (It is possible to get the eye disease before the thyroid numbers go wonky.) But an opthamologist needs to treat the eye disease (or watch and wait –depending upon the findings) so it makes sense to get that input sooner, rather than later.

The grainy feeling in your eyes could well be because they are dry. Even if you are more aware of tears than you used to have, it could be a sign of dry eyes which very often accompanies thyroid disease. To protect the cornea when dry eyes are the condition, you need to use artificial tears frequently enough that you do not feel dryness. These types of drops are available in grocery stores and drug stores, in a variety of brands. The key is to look for "artificial tears" and not "get the red out" types of drops. My endocrinologist and opthamologist prefer that I use the single-use packets of these tears — the ones without preservatives in them. I never asked why. But many people use the types that come in multi-use bottles which say "preservative free in the eye" (whatever THAT means).

I hope these suggesitons help — and good luck.

[Bobbi]

in reply to: Hello! New Member! #1074668

It sounds like you have been a superb advocate for your daughters with their doctors. And, they are undoubtedly a lot healthier now than they would have been had you not been able to move through the medical morass you found yourself in originally.

You commented that you would like to known what might lie ahead as they age. Obviously, the most important factor is that they not be at hyperthyroid levels for long periods of time. If their thyroid hormone levels can be kept normal, as far as I know the prognosis is good. Unlike diabetics the replacement hormone we take seems to work like the normal hormone does. The synthroid-like replacement hormones are chemically identical to T4 which is a type of "pro-hormone" in that it must be converted to T3 to be used in the cells. It has a rather long biological life span (something like a half-life of six and three-quarters days), and it is converted, and used as the body needs it (not just when you take it, like insulin). So we typically do not yo-yo hormonally which is something that is extremely hard on bodies. What is hard on our bodies is being hyperthyroid, which is why it is so important to have that controlled.

There is a bulletin from the NGDF that discusses educational issues as they might relate to children with Graves. If you can navigate the home page of the NGDF as well as you did the ins and outs of medical treatment for your girls, you should be able to find it. (I have not located it on this new board as yet! )

Wishing you and your daughters well.

[Bobbi]

in reply to: finding it hard to cope #1074678

I know it is hard to believe at this point in time, gravessufferer, but the treatments CAN make us healthy again. You are supposed to feel well, not ill, both physically and emotionally. That is what you should be expecting. Graves is a very serious illness, but it is also very treatable.

If your heart rate is elevated, you need to be taking those beta blockers that have been prescribed for you. And your heart rate should normalize as your thyroid levels normalize. You need to make sure that you see your doctor regularly for the required blood tests to make sure that you are on enough carbamzole to put your thyroid levels into the normal zone. There is no one-size-fits-all for this drug: the dose must be tailored to your own needs. Sometimes it can take months to find the appropriate dose.

Emotionally we become more fragile while the thyroid issues are out-of-whack. It is very normal to be much more emotionally volatile while this is going on. We cannot "trust" our immediate responses to things during this time. But it does pass — once you have normal levels again (controlled, over time) the emotional side of things settles down.

I do hope you are feeling much better soon.

[Bobbi]

in reply to: PTU QUESTIONS! #1074762

You need to talk with her doctor ASAP. Whether or not it is wise to continue on a medication that is causing hives (whether the allergic reaction could worsen and become life-threatening) is a medical decision.

Good luck,

[Bobbi]

in reply to: depression #1074691

I think you did a great job, Madame X, on this one. You did an excellent and thorough job of making helpful suggestions.

And, Hopeful, there IS a way out, and you are taking it. You have a consultation with a surgeon set up. Yes, you are scared (who wouldn’t be — it shows you are thinking), but you know that you need to get effective treatment for the disease.

I’m sorry your relationship failed.

[Bobbi]

in reply to: decongestants #1074708

Hi, Cathie:

I think that this is a question that needs to be directed at your own endo/PCP. I had RAI, and am on replacement hormone. I was told that the restrictions no longer apply to me. I assume that means that if the disease is well and truly under control, we don’t have issues with these medications. But that does not mean that some restrictions wouldn’t apply to you, or someone who was on the meds, etc. Better to be safe than sorry.

And, I use the pharmacist ALL the time to help me navigate the waters of prescription drug use. They have been a huge help over the past few years. There is usually one available when I need advice, too. ” title=”Wink” />

Hope you are feeling better soon.

[Bobbi]

in reply to: PTU QUESTIONS! #1074756

PTU is the short-hand name for one of the two major antithyroid medications (ATDs). It’s long chemical name, which starts propylthio….. is filled with spelling hazards, hence PTU. The other drug is called methimazole(Tapazole).

[Bobbi]

in reply to: How do you to find a great endo? #1074728

Hi, Sara:

I lived in Washtenaw County for many years. I did not need an endo then, but I found lots of good doctors associated with the University of Michigan hospitals.

As to how to find a qualified endocrinologist: ask for recommendations from your doctors; ask someone you know who has diabetes who their endo is and what their endo is like. When you call an office, ask if the doctor is "board certified."

A caution: do not equate personality with competence when it comes to endos. They do not necessarily have to have warm and fuzzy personalities to be skilled, highly qualified doctors. They do need to listen to us, and give credence to our symptoms. They do not, however, need to agree with our "interpretation" of our symptoms. We are the amateurs at interpretation.

[Bobbi]

in reply to: meds or RAI #1074834

Hi, Clara:

No, starting the medications does not "trigger" the eye disease. You are already at risk for developing the eye disease because of the Graves. There’s no way around that. Some folks develop the eye disease before their thyroid even goes wonky. Some develop the eye disease at the same time as their Graves is diagnosed and they start treatment (giving rise to the conclusion by many of them that their treatment triggered the eye disease). Some don’t develop the eye disease until months and months after successful treatment. Some people do not ever develop overt symptoms of the eye disease. But some doctors believe that 100% of us with Graves have "some" degree of eye disease, even if the symptoms of it are not observable. They believe this because of the development of soft tissue imaging techniques (like MRIs, CAT scans, ultra sound, etc.); using these tests doctors have found eye muscle changes in a much larger number of Graves patients than they expected to find.

[Bobbi]

in reply to: Question about RAI #1074725

Ski — one of the facilitators here — has had RAI twice. She should be getting home from her holiday vacation soon, and she can write you her experiences. In her case, the first treatment did not render her hypothyroid, so a second was required. And I do know that thyroid cancer patients often receive multiple treatments of RAI, and this is after they’ve had most of their thyroid surgically removed! I recommend that you do discuss things carefully with your doctor, but I know of no reason for you to fret…..other than that you are hyperthyroid again, which is definitely a bummer.

[Author]

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