[Ski]

#1061640

Removing the thyroid doesn’t necessarily stop the formation of antibodies, but the antibodies don’t make you sick by themselves, they make you sick by acting on the thyroid and making it release too much thyroid hormone, so hyperthyroidism is the illness. Without a thyroid, no hyperthyroidism (as long as your replacement hormone dose is correct), but even through the process of adjusting thyroid hormone replacement, your levels will never spike radically out of control like they can when antibody action is high and your thyroid is reacting to that.

Now it’s a little confusing hearing that your T4 and TSH levels are normal, because without a reading of hyperthyroidism, your doctor likely wouldn’t take any action. The difference is that your symptoms are so severe. Have you actually seen copies of your blood test results? The normal range is really enormous, and if you fall within it anywhere, the doctor will see a "checkmark" next to "normal" and say everything’s fine, but you may be 0.1 away from leaving the normal range, which is something that the doctor may not address, but you could bring it up and discuss with your doctor the fact that you are very nearly NOT within the normal range, then the two of you could discuss likely treatment options, or routes to take to SEE if you can find health at a different point along the range.

The fact is that we Graves’ patients come in all sorts of mindsets and with all kinds of different opinions, and luckily we have three treatment options that give us some leeway in the decision of how to treat Graves’. I chuckle when you say "why don’t we all," because for the most part, each of us that has done any research and made a decision feels as though it was the best possible decision, and we think everyone should just come along and do it our way ~ but we’ve all chosen different treatments, so there you have it. The decision is just as much emotional as it is practical.

I really hope you find a path to feeling well soon, it’s so debilitating to feel unwell all the time, I know!

[erica]

#1017920

Hello, please forgive me if this is somewhere on the site already. Does thyroid removal stop the formation of antibodies?

I don’t feel my doctor is being helpful, I know I should just find a different one, as she is not even an endo, but here in AZ it can take 4 months. I have very high antibodies which of course are making me sick. With a normal TSH and T4 there is not medicine, that I know of that will fix this-although my doc says to take PTU. I am researching thyroid removal. Some say to wait until the antibodies have destroyed the thyroid, are they crazy, that could take ten years, I can’t imagine living like this for another week let alone multiple years. My doctors apt was cancelled, so I have a new one for this coming wed which I know will be here fast, but I am not feeling good so it is on my mind 24/7. Yesterday I was doing a lot of grocery shopping and was just wiped out afterward. After picking up my Husband from work, I was foggy, achy, exhausted, having muscle spasms in my leg & eye, and shaky. He wanted dinner made asap and was upset that I wasn’t rushing to make it. He just does not get it and I don’t think He ever will. He ended up yelling and getting all worked up and upset which finally ended up with me stressed out with crazy palpitations and him taking us to a drive through. Luckily we started the evening over and afterward had a nice night. But I know incidents like that make my pulse spike which isn’t healthy.

Like everybody else I am sick of being sick and tired of thyroid problems. I want to get rid of these antibodies and the thyroid for once and for all. Why don’t we all just get rid of the thyroid? I realize it might be expensive, but think of all the medicines and doc appointments over all the years , they all add up too. And what about the price our bodies and personal lives pay? To me, I don’t care how much the operation is, I will find a way to pay for it even if it means paying for it for the rest of my life, it will still be cheaper than what my life is paying for now.

[erica]

#1061641

Thanks for your response! ” title=”Very Happy” />

Yes, I have copies, now after finding this site, I have copies and I know what tests to ask for ” title=”Smile” />

It is strange, my tsh and t4 being “normal” . my labs from a few weeks ago were:

TSH 5/2011 (is confusing bc the reference range is different than the past tests) .92 (reference range: uIU/mL .450-4.500)

Here are my other recent tests:

T4 (free direct): 1.4 ng/dl .82-1.77

Triiodothyronine, free, serum: 3.4 pg/ml 2.0-4.4I

antithyroglobulin is 531 range is (0-40)

thyroidperoxidase is 103 range is (0-34)

I don’t get what is happening to make my antibody level so high. And with it being so high, how is it making me feel so sick if it is not changing my thyroid levels? Weird. Isn’t just having really high levels of antibodies enough to make someone feel ill? I mean I don’t know much about it all, but I can’t imagine that it wouldn’t create problems, after all it is not normal to have a high number, well I don’t really know that either. Maybe my symptoms are the effect of the “attack” on the thyroid-even though the thyroid is still maintaining maintaining?

I didn’t know I would still have antibodies them after the operation. I wonder if the number goes down?

The reason I said, “why don’t we all take out the thyroid” is because it seems like I read so many posts about people continuing for years and years to have thyroid problems. So it would seem that simply taking out the thyroid would eliminate future problems. Myself is a good example. What is so great about remission if it will just come back later? Over and over? Surgery seems scary, but so does having crazy symptoms for the rest of one’s life. I wonder what people who had RAI a couple times only to then later have more problems yet again think. I would guess they would wish they just took it out in the beginning and avoided years of hardship and medical bills.

Here are some questions that I have been wondering….If this problem happened to men as much as it does to women, would the thyroid be taken routinely, just as the tonsils used to be? I think of all the doctors’ visits and tests throughout the years that one requires with a bad thyroid, people are certainly making a lot of money off that-why would they want to change anything. How many endocrinologists are women I wonder…

[Ski]

#1061642

Interesting questions!

As always, we aren’t able to evaluate your lab test results, but you can see WHERE you fall in relationship to the high end or low end of each level, and with historical lab results, you can see whether your levels are *changing* in the face of the rising antibody levels, which may be very illuminating. Any T4 level that is above YOUR NORMAL POINT (or TSH level below your normal point) will create symptoms in your body of hyperthyroidism. That’s why we bang the drum to FIND your normal point, rather than accepting any level within the normal range. A symptom diary may help to start the discussion with your doctor ~ keep a record, each day, of your symptoms, their severity and their affect on your life. After about a month, you can take that to your doctor and discuss a plan to resolve your symptoms, no matter their cause.

Antibody levels rise and fall for reasons that no one has been able to fully explain. While we don’t know every reason they rise or fall, we do know that they typically rise when we are faced with an illness, which is very normal ~ the purpose of antibodies is to fight illness, so they activate upon a state of illness ~ and they also rise in times of stress, which, again, is a protective measure the body puts in place to protect you when you are vulnerable. Unfortunately, our GD antibodies are kind of like a "fox in the henhouse," because they travel with the antibodies that help us, so that complicates things.

One thing you should remember is that support groups and bulletin boards are heavily slanted toward illness ~ people who had RAI, or use ATDs, or had surgery, and are satisfied with the result and feeling healthy, would NOT seek out our board or support, because they are feeling fine and going about their lives. People who have experienced ongoing issues will search us out, because they need help. It ends up looking as though "everybody" has problems, when in fact that’s not true.

Believe me, you’d have a lot of unhappy patients if the only protocol were to remove the thyroid surgically. We have plenty of people here who have taken ATDs and been successfully managed longterm for many years on low doses, or who have attained and maintained remission for many years, and those people would argue that they’ve retained their body in its original state, so how could that be bad? If it comes back, they’ll look to other options, but in the meantime they’ve had years and years of health. Not everyone experiences constant fluctuations ~ if they do, thank goodness they have another option, but if they don’t, it’s not the nightmare you describe, certainly.

Personally, I had RAI (and needed it twice), but now I feel well and am successfully managed on replacement hormone. I would have been horrified if someone had told me that my only treatment option were to cut my throat.

One of the speakers at our conference in 2009 gave a terrific presentation on just this topic ~ pointing out which factors would steer a particular patient toward one or another of our potential treatments. The reasons for choosing one treatment over another are nearly as numerous as patients who do the choosing. Bottom line, a return to healthy thyroid hormone levels WITHOUT SYMPTOMS is the goal, and however anyone achieves it, great. In addition to that, a patient who is educated about the options and consequences is usually much happier with the results, in my experience watching the BB, no matter which choice they made.

If you are convinced your symptoms are thyroid related, then you should keep pressing your doctor until they figure out what to do about it. If they say they are not thyroid related, then you should keep pressing your doctor until they figure out what IS causing your symptoms and how to relieve them. Staying unhealthy is simply not an option, and you sometimes need to fight to get your health back. Doctors are never as concerned about our health as we are.

[Kimberly]

#1061643

Hello – You got some great info from Ski – I just wanted to touch on the antibody issue. There was a study published in 2008 by Laurberg, et. al. in the European Journal of Endocrinology that looked at antibody levels for patients who had been treated with ATDs, RAI, and surgery over a period of five years.

The ATD and surgery groups had very similar results: a major drop in antibody levels during the first year, and then a more gradual decrease over the course of the next few years. The ATD group had *very* slightly lower antibody levels than the surgery group. With RAI, the antibodies actually *increased* significantly within the first six months and then gradually leveled off. After five years, antibody levels for the RAI patients were still higher than the ATD and surgery group (although much lower than they were before treatment).

Also, whether or not the thyroid is functioning doesn’t tell the whole story with antibody levels. In our most recent conference, one doctor mentioned that about 15% of patients have eye involvement *before* they end up with thyroid involvement. And there are patients who can experience eye issues literally decades after treatment for hyperthyroidism. So this is definitely an area where greater understanding is needed!

[snelsen]

#1061644

I welcome further comments on my view on antibodies. Realizing that the very good responses were addressing questions about antibodies, I’m adding more thoughts to the antibody issue. Since there has been so many questions, and so much discussion about antibodies on the board lately, I would like to remind people that thyroid antibody labs are not the labs that guide treatment of Graves’ or TED. Certain thyroid antibody labs can be one help in identifying Hashimoto’s which is another thyroid disorder.
But aside from a few autoimmune disorders, including Graves’ antibodies are our friends, and they are the guys who attack foreign bodies, viruses and bacteria to keep us healthy. So, in general terms, antibodies keep us healthy, they do not make us sick. There are unfortunate exceptions, to name a few, Graves’, diabetes, Crohns and celiac in some instances, the immune system regards a part of our body as an enemy, and attacks it.

The two variables that helps our doctor and us manage our Graves, are:
-our clinical symptoms, how we feel
-Thyroid labs, which include TSH, T3, T4.
with the accompanying treatment of ADT’s and beta blockers when first diagnosed, followed by the long term management of:
ADT’s, RAI or surgery, accompanied by thyroid replacement with the latter two.

I have had quite a bit of experience in reviewing proposals for clinical trials, and a fair amount of experience reading clinical trials. I did this as a layperson and community member. Plus, I have what is (politely called) and "inquiring mind!"
I read the study Kimberly mentioned by Laurberg, and I immediately thought,"well, that would be MUCH more interesting and meaningful in the academic circles if they had another group, a control arm of the study, of people who did not have thyroid disease at ALL! And compare them with the other groups.

Regarding another post, I’d like to weigh in here as a person who was very happy choosing surgery, or a thyroidectomy for my Graves’. As Ski mentioned, most of us reach one of the three choices for our own personal reasons.

But I would suggest IF there only method to treat Graves’ were surgery, people would not be horrified at this choice, but then, as now, would be looking for relief from the horrible hyperthyroid state that had changed our lives so drastically.
They would be very happy that there was a way to get out of this miserable state, as I was.
One great thing about this site is that there are so many posters who reflect being very happy with whatever choice they made regarding management of this darn disease. Some of us would never consider RAI, for reasons rational or irrational or practical. Some of us feel the same way about ATD’s and would not choose that as a long term treatment. And the rest of us would never choose surgery.
Shirley

[JennaV]

#1061645

I can only speak from my own experience, but I was on PTU for about 6 months, and although my thyroid levels were regulated (and sometimes slightly low) during that time, my eyes remained puffy, dry, and itchy with no improvement. Then I had a thyroidectomy about a week ago, and already my eyes are definitely less dry and itchy and getting less puffy, too. Maybe it is my imagination, but my husband, my mom, and I all see a difference in my eyes already. I do not have TED persay, but the antibodies definitely affect my eyes.

[Author]

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