[Bobbi]

in reply to: Something I Never Expected #1063838

Basically, Graves autoimmunity is never gone for us. The antibody levels typically rise and fall for no well-understood reason, but the antibodies are persistent once created. And, even after RAI, the antibody levels can have an impact on our replacement hormone needs. There are other factors as well — and not necessarily euthorid sick syndrome — that can cause us to need more, or less, replacement hormone. Over the years, my replacement dose has been adjusted at least two or three times — both up and down. It’s an easy fix.

[Bobbi]

in reply to: frustrated by memory #1063843

Hi, Julie:

Do call Ellen. She can be a huge help. But the part of your post that caught my eye is your statement that you "just" got stablized. That’s an important event, but it does not mean that you are currently "normal," in the sense that the out-of-whack stuff caused by being hyperthyroid is completely gone. At one of the conferences, an endo recommended that we think of hyperthyroid being like a hurricane. When it is present in the body, it is doing damage. When it finally leaves (i.e. when we get our levels stabilized), there is damage left behind, just like there is after a hurricane. Getting the winds gone is the first step, and an important one. But communities have to rebuild after a hurricane hits. And our bodies have to rebuild after we get our hormone levels stabilized. Almost — or maybe every — body system was disrupted by the bad levels of thyroid hormone. It takes time for the damaged parts to heal.

[Bobbi]

in reply to: Symptoms back after 2 years in remission :( #1063941

Hi, Marta:

Everyone is different. The dose that one person is on with the antithyroid drugs can be very much different from another persons.

Some of our doctors prefer not to keep their patients indefinitely on the antithyroid drugs. Others are more willing to let them be used as long as they are not causing problems, provided they are adequately controlling thyroid levels. But the doctors that prefer a limited time, usually talk in terms of one or two years, to see if the patient goes into remission. The drugs do not cause the remission. But our antibody levels can rise or fall for no well-understood reason, and when they fall low enough, our symptoms can subside, temporarily. Remission is definited as being able to go off the drugs for a period of at least one year, without a recurrence of the hyperthyroidism. Remission does not mean "cure." Our hyperthyroidism can return at any point in time.

[Bobbi]

in reply to: flu shot? #1063857

Typically, if it is a "shot", an injection, the annual flu shot is done with dead virus material. If it is given as an inhalant, as the H1N1 last year was sometimes given, it was a live, but weakened virus.

I have received the flu shots every single year, even during my early treatment phase. The only time one of my doctors was cautious about giving it — and only gave me a half dose — was the year I was on beta blockers, and I’m not sure why that was precisely. To find out if it is wise for you, your own doctor would need to weigh in — but a GP would be as good as anyone else.

Do not equate having an autoimmune disease with having a weak immune system. We have an immune system that works just fine. We are not immuno-suppressed. Our immune systems made a mistake in creating an antibody to one of our own body parts, that’s all.

[Bobbi]

in reply to: Symptoms back after 2 years in remission :( #1063936

Hi. I’m sorry you may be out of remission, but YOU did not bring it back. That sentence in your first post really tore my heart. We cannot prevent stress in our lives. Even happy events, like anticipating a baby, or getting engaged, causes stress. We can do things to help us cope with stress (getting exercise, eating well, getting proper rest, blah, blah, etc.) but stress itself is ALWAYS a component of life. And when we have an autoimmune disease, stress will rev up the immune system and our symptoms can return. It does not mean that we have done anything wrong, either. We could be getting the proper exercise, blah, blah, and STILL fall out of remission. Remission does not mean "cure." It means a "temporary" cessation of symptoms.

So, please, do not beat yourself up. Give yourself a huge hug, and some special treat.

[Bobbi]

in reply to: RAI set for Sept. 30 #1063871

I was never cautioned against dairy, Joanie, so I hope that doesn’t happen in your case either. I do wish you good luck. You might want to take a friend or family member with you to your RAI. If you are given instructions by the nuclear med doctor there, having a second pair of ears can be really helpful. I got all of my instructions on what to do right before I took the RAI, and I was so nervous that I probably forgot half of what the doctor told me.

Again, good luck.

[Bobbi]

in reply to: Allergy to Iodine #1063903

Thank you, Harpy. That is also what I have been trying to say, as well.

Researchers have also demonstrated (a study at UCSF, if I remember correctly) that even folks who have a demonstrated
"allergy-like" reaction to the contrast agent used in CT scans can tolerate, without reaction, a direct injection of an iodine-containing compound. (It was sodium Iodide — or something like that.) They did this in a study to determine whether or not it was reasonable to even talk about an iodine "allergy."

So, buttamama, your options may not be quite as closed off as you believe. But you need to be able to find a doctor to work with you to determine just what option gives you your best chance of regaining control of your thyroid hormones. I do wish you good luck, and good health soon.

[Bobbi]

in reply to: CONFUSED #1063883

Hi, Sheila:

You asked how I decided which treatment option was best for me. Like everyone else (or just about) I was put on an antithyroid drug at first. There are many good reasons for starting out on an ATD, so that is often the doctor’s first choice. ATDs interfere with the production of thyroid hormone, and the thyroid stores thyroid hormone it’s already made, so taking the drug for a while lowers the total amount of thyroid hormone not only in the blood, but also stored in the thyroid. It makes it somewhat safer, from what I understand, to then go ahead and remove the thyroid either via RAI or surgery.

I was on PTU, and felt horrid the whole time. Many people on the ATDs report feeling much better. It didn’t work that way for me, and I decided that there was no way I was spending years taking a drug that made me feel doped up. So after a few months I decided, after researching, to do RAI and remove my thyroid. I felt so awful hyperthyroid, and so much worse on the PTU, that I decided I needed to get rid of the body part that was making me ill in the first place. Part of why I chose RAI over surgery is that I am somewhat irrationally phobic about surgeries in general. It turned out that I was right: I was having an adverse reaction to the ATD. Removing my thyroid put me back on the path to good health.

Anyway, my recommendation to you is (1) do research and list the FACTUAL pros and cons of the treatment options. Include in that the pros and cons of using the ATDs (methimazole or PTU) vs. using replacement hormone as well. In other words research side effect issues. The reality is that we will be on a medication of one type or other forever. Only 20-30% of people experience a true remission (defined as being able to go off the meds for a year or more and have normal thyroid function), and most of those people become hyperthyroid again at some point later in their lives. So understanding the pros and cons of the medication you plan to use is important.

THEN, (2), list your fears/emotions about the treatment options and take a good hard look at them. By identifying the emotional response you have to one treatment or another, you will be able to be a wee bit more objective. No, I didn’t do surgery, but my doctor wasn’t advising it, either. But had my doctor been strongly urging me towards surgery to treat my hyperthyroidism, by understanding that I am somewhat irrational where it is concerned, I could make a better decision for myself.

You will find yourself doing a lot of second-guessing, and perhaps wavering between one option or another. The one thing that may help you though, is to understand that ALL of our treatment options are safer for us, in general, than staying hyperthyroid. Your doctor will give you the benefit of his/her experience and medical knowledge about whether or not you should avoid one treatment over another. Listen carefully to any advice like that. There are really good medical reasons why any one of us should avoid one treatment and consider others, and this varies from one person to the next. But staying hyperthyroid will destroy your health — so, barring your doctor telling you that one treatment probably is not a good idea, any treatment decision you make will be be better than where you are now.

Good luck,

[Bobbi]

in reply to: joint pain #1064008

To momssick:

The human body is incredibly complicated, and what is diagnosed as a symptom in one disease, may not indicate that disease in another person. It is TOTALLY frustrating to those of us who are ill, or suffering from something that the doctors cannot figure out.

So, it is known that the antithyroid meds can cause arthritis-like joint pain. But there are other things that can cause joint pain as well, including another autoimmune disease called rheumatoid arthritis. And, perhaps other disease conditions as well — we are not simple creatures. If, however, when you were on your meds, you were having ‘normal’ (not hypo) blood test results, and if, when you stopped the meds the pain went away, point that out to your endocrinologist. It will help the doctor to figure out what was going on. There are two antithyroid drugs, although our doctors are leaning more towards the one for safety reasons, nevertheless, there are two. There is also the removal of your thyroid as a possible treatment option. But whatever you do, you absolutely must make your priority getting your thyroid hormone levels under control. You may not be able to solve all the problems at once — although that would be a real blessing if it happened. But at least if you focus on the thyroid issues, while trying to figure out the joint pain, you will know that you are still helping yourself back to health.

I hope you and your doctor can figure out what is causing the pains soon.

[Bobbi]

in reply to: Question about Doctor #1063886

The treatment you describe is what I experienced with my GP, actually. The endo took a bit more time to explain things.

Essentially, having a suppressed TSH, and an elevated level of actual thyroid hormones (the T4, for example) is absolutely conclusive for a diagnosis of hyperthyroidism — and it does not matter what the cause is, it must be treated promptly. The drug prescribed for you, methimazole, is standard. What it will do is act as a chemical block to the production of thyroid hormone. The important aspect of things is getting precisely the right amount of methimazole so that enough thyroid hormone production is stopped to enable you to have normal levels of thyroid hormone. If you take too small a dose, you will stay hyperthyroid; too big a dose will make you hypothyroid. The problem though, is that it can take 6-8 weeks for a blood test to PROPERLY show how appropriate your dose is. So the time frame your new endo has indicated is appropriate, if not comforting.

We can be hyperthyroid without having Graves, but typically Graves is the dominant reason. And the uptake and scan test is used to determine that. The thing is, it doesn’t matter what is causing the hyperthyroidism: the initial treatment options are the same whether it is being caused by the whole thyroid running amok or just parts of it.

I do hope you are feeling better soon.

[Bobbi]

in reply to: CONFUSED #1063880

As a general rule, if you get adequate treatment soon enough, you can expect your health to improve. You will probably always have to take some form of medication to maintain your health, but you should not expect to have "problems" unless you were hyper so very long, that damage from the hyperthyroidism was permanent. Hyperthyroidism is really wicked on the body, and some people continue to have heart problems (for instance) after appropriate treatment eliminates the hyperthyroidism; some people lose so much bone while hyperthyroid, that they develop osteoporosis. But for the majority of us, we regain our health.

I think it’s important to make a distinction when you talk about "Graves" causing something or other. The major problem that the Graves-associated antibodies cause is thyroid malfunction. If you have wonky thyroid levels, you will be tired. None of your body systems will be working properly. When you first get your thyroid levels under control, you’ll probably still feel tired. But after your body has had a chance to heal AT normal levels of thyroid hormone for a few months, you should start to feel "normal" — but "normal" also includes the possibility that you’ll feel tired at times. And, when you are healing, if you don’t exercise wisely to regain muscle strength, you might feel tired symptoms longer than necessary.

It is impossible to avoid stress. People who advise you to avoid stress are likely to be unaware of that fact. The reason behind the advice is that it is thought that stress contributes to the immune system revving up into overdrive. When that happens, we have a higher level of antibodies than normal, and for those of us with autoimmune diseases, that means our symptoms of the disease will increase. The problem is that stress occurs all the time, in various ways. You cannot avoid, for example, the stress associated with losing a love one; or the stress associated with planning a wedding, preparing the Christmas dinner, expecting a baby, anticipating a job review….etc. IF you have behaviors which increase your own stress levels, then changing your behavior to lower those levels can help. For example: I realized that a lot of what I did to prepare for holiday dinners was unnecessarily stressful. I did not have to "do" things in one particular way to please anybody else becuase I was doing them to please myself. So, I figured out how to structure holiday prep more sanely (at least for me). It helped to lower the stress. It did not eliminate it totally, however. That would be impossible.

[Bobbi]

in reply to: Allergy to Iodine #1063896

We have to have iodine in order to live. Thyroid hormone, which is necessary for molecular processes at the cell level in the body, REQUIRES iodine. Without sufficient iodine, for example, the nervous system will not develop properly in a baby, and a severe form of mental retardation occurs — called "cretinism."

While excessive iodine intake has been demonstrated to cause temporary thyroid malfunction occasionally (either ramping up hyperthyroidism, or shutting the thyroid cells down temporarily), iodine intake has not been shown to cause Graves.

[Bobbi]

in reply to: new to aving Graves disease #1063955

Hi, Sheila, and welcome to the Board.

The good news in all of this for you, is that the treatment options work to make us healthy again. What makes us ill is the hyperthyroidism, and the treatment options — whether medication, or removal of the thyroid — can bring your thyroid hormone levels back into the normal zone. Once our hormone levels are normal again, our bodies can begin to heal from any damage caused by being hyperthyroid.

[Bobbi]

in reply to: Very frustrating and need some serious help #1063923

It is possible to be hyperthyroid (with all of those accompanying symptoms) and not have Graves — the autoimmune disease. Obviously, none of us here are qualified to tell you that is what was happening to you, but, again, hyperthyroidism does occur without the antibodies. And hyperthyroidism is what makes us so incredibly ill. Sometimes, it is caused by an actual virus — but that would not continue for a long period of time because the body’s immune system would eventually kill the virus off (as I understand things). Sometimes hyperthyroidism is caused by a group of cells that go berzerker for whatever reason — in medical speak this is called an "autonomous node." A group of thyroid cells go out of control, over producing thyroid hormone. The treatment for this problem is really the same as the treatment for the autoimmune disease, too.

Also, the eye disease is now often called THYROID associated opthamopathy, instead of GRAVES opthamopathy because researchers/doctors have been seeing it in people without the autoimmune Graves disease.

I know it is frustrating. And I wish you well, figuring out what is best for you to do now. I do hope you are feeling much better, and soon.

[Bobbi]

in reply to: RAI vs Surgery vs Meds #1063968

Hi —

I just want to reinforce Ski’s message to you. And let you know that I am another person who chose RAI. I did it 13 years ago, and it brought me back to health. My mother had RAI in the 1970s. It also gave her back her health. She lived for almost 30 more years with no thyroid-related problems.

Researchers have looked, and looked hard, for over 50 years to see if they can find problems caused for us by RAI. They have not produced any research results that substantiate your sisters’ fears.

Your decision should be based on fact, not fears. ANY of our treatment options are safer, in general, than remaining hyperthyroid. There are medical reasons why an individual should not pursue one treatment over another. For example, going into anaphylactic shock on the meds would be a very good reason to avoid that treatment option. There can be similar, medically sound reasons for either doing, or avoiding RAI or surgery. Your doctor is going to be your best guide to those. It is most definitely your choice. But I would recommend that you give your doctor significantly more credence than anyone else. And if you doubt your doctor, get a second opinion from another, equally well-trained doctor.

I do wish you good luck with your decision. I know how hard it is. But keep your focus on the fact that we do get well again if we get appropriate treatment soon enough.

[Author]

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