[Carito71]

#1059541

Hello everyone.

Since TSIs play a big role in Graves’ Disease, I thought you would be interested in reading this article about TSIs, what they are, and what role they play in GD. I found it short and to the point.

http://www.hopkinsmedicine.org/endocrine/graves/answer.asp?questionid=22

Caro

[Naisly]

#1175548

This is a good article, thank you for sharing.

I will mention this as well, as I’m sure some of you don’t want to hear it, but here goes.

TSI doesn’t go away just because you destroy your thyroid with RAI, actually it makes it worse, because the TSI sees RAI as a threat and will bind to other tissues giving us other autoimmune disease as the article states – thyroid eye disease and pretibial myxedema. Where as the lesser of the two evils surgery will remove a lot of the TSI since most of the TSI stays in your thyroid. But surgery won’t remove all of it. And this is why some people will get TED even years later, much like Shirley here on the forums.

~Naisly

[vanillasky]

#1175549

This is pretty distressing news to me. I had one surgeon I consulted with tell me that TSI would be destroyed eventually but it would take at least 3 years. She was wrong? Makes me wonder if surgeons just lie to get the business so they can do their surgery?

So if we have a “dead” thyroid in our necks or no thyroid because it is removed surgically, we still have the antibodies? This is beginning to really upset me.

[catstuart7]

#1175550

Vannillasky, there’s a study out there that I saw a bit ago but didn’t save the link for that shows the rate of antibody decline for RAI vs. surgery over a period of ten years. For most people they do decline though it takes a few more years with RAI. Like everything else with GD there is no option that guarantees certain results though.

[Bobbi]

#1175551

No, Vanilla Sky, your doctor was not wrong. Why would you assume the doctor was wrong? Why would you assume your doctor would lie? Why wouldn’t you assume that the patient( the amateur, if you will) has gotten it wrong? These health decisions are complicated.

And, yes, antibodies can linger after removal of the thyroid. Reality. But antibodies are like keys to a lock. Just because you have a key, it does not mean you can open any old lock. Antibodies are not lock PICKS. They are keys. So removing the lock (the thyroid) puts those antibodies out of business. They can no longer make you hyperthyroid, which is the life-threatening condition.

We have three treatment options that can give us back normal thyroid hormone levels. They are RAI, surgery and ATDs. They may none of them be perfect, but they are hugely better than the possibilities offered to many other folks suffering from autoimmune diseases. We CAN get our health back. That’s the bottom line.

[AzGravesGuy]

#1175552

Vanillasky,

Hooray and congrats on questioning your dr’s word. There is nothing wrong with being an informed patient or disagreeing with recommendations, as long as you have researched it and have information to back up your assertions.

This caused a huge rift between me and my dr, as I have caught my endo in misinformation more than once.

I knew more about GD then my last endo. Crazy right? Thats why I fired her.

Question everything.

I have had some consults with drs that were CLEARLY money motivated, and others that had outdated information and didn’t care to learn.

They are doctors, not gods.

There is no better advocate for your health than yourself.

[vanillasky]

#1175553

Well, sorry if I offened you, Bobbi, that’s certainly the last thing I wanted to do. However, I do apologize for maybe what “didn’t come out right” in my last post.

However, I have been told (and this doctor was a very young female surgeon that did general surgery) and raved about appendix and how great she was,that was going to yank out my thyroid as she put it.

She was friends with another endo I was seeing in Syracuse NY. I later was told that many surgeons are mis-informed about different things and all they see are $$$$$$$$$$$$$$$$$$$$$$$$$$$ signs. They are in business to “cut” and that’s all they know. So truthfully, how am I supposed to know? I hesitated with her, I was not sure.

This is just the same as plastic surgeons who promise to make you into a movie star and botch it up. Very similar. You have to be careful. Maybe I shouldn’t have used the word “lie?” Maybe “mis-informed?”

[vanillasky]

#1175554

Also wanted to mention, I don’t BeLIEve everything doctors say to me. I have been told many “stories” like acupuncture will take care of hyperthyroidism, menopause, and other crazy diseases like Lupus. I don’t regard myself as an amateur. I think I’m a professional patient. I have SUFFERED FOR 15 years from this disease and mis-diagnosed with Hashimotos, given the sentence of not being able to take ATD’s when hyper because “Hashimotos does not respond to ATD’s.” That’s what another told me. Was he right or wrong? I still don’t know. So what you are saying to me is a bit offensive. I must be honest and right now, I am NOT in a good place. I have been extremely sick since last Thursday.

have a nice day, I know I won’t.

[Naisly]

#1175555

vanillasky
I hope you will have a better day tomorrow. But try not to take what Bobbi said to heart, it’s my fault anyways, I believe she was making a ‘jab’ at me, not you.

~Naisly

[vanillasky]

#1175556

You’re cool, Naisly. I’m just trying to get some support here because I don’t have anyone in my so-called family that understands this stuff and I feel very alone.

husband could care less, mother lives in her own little world, and one friend I have, tells me to drink Asparagus juice. She says that helps hyperthyroidism so you see what I’m dealing with.

I come here for support from my own home and behind this keyboard. I have no one who understands this disease and nobody cares.YOU PEOPLE ARE in the same boat I am in, so I feel a good sense of communication with all of you. But at the age of 54, nobody is gonna step on me or I’ll have to run them over. You understand what I’m saying?

I don’t appreciate being scolded like a 2 year old that won’t eat their vegetables. I’m feeling particularly rotten right now and laid in bed most of the day burning up and sweating with a headache, and the tears just kept coming down. I keep wonder what I did to deserve this disease. I have racked my brain and i don’t get it. Christmas is coming. And my father died on Christmas so I have a lot to look forward to. Life sucks and the last thing I need is someone dogging me.

[Kimberly]

#1175557

Hi all – A couple of quick notes…

This link is to one of the more well-known studies on treatment options and antibodies. In general, antibody levels tend to spike in the 6 months or so following RAI, while they tend to taper off with surgery and with anti-thyroid drug treatment.

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.eje.org/content/158/1/69.full

Keep in mind, though, that the chart you see was taken from averages from all of the patients who participated in the study. Some could have had an even faster disappearance of the antibodies, while others could have had antibodies linger far past the “norm” for other patients. And this was one study — another doctor’s personal experience with treatment options and antibody levels could be different.

As for selecting a thyroid surgeon, definitely run the other way if you feel that a doctor is seeing you as a paycheck and not as an individual. We had a thyroid surgeon speak at our Boston conference in 2011 and one of her comments always stuck with me: “Don’t let anyone bully you into one particular treatment option.” She said that there are cases where she will recommend that a patient pursue one of the other options and NOT surgery.

[HelenYH]

#1175558

Kimberly wrote:

http://www.eje.org/content/158/1/69.full

Keep in mind, though, that the chart you see was taken from averages from all of the patients who participated in the study. Some could have had an even faster disappearance of the antibodies, while others could have had antibodies linger far past the “norm” for other patients. And this was one study — another doctor’s personal experience with treatment options and antibody levels could be different.

Thanks Kimberly. I found this article useful. I have all 3 symptoms – the hyperthyroid (with goitre), slightly protruding eyes, and pre-tibial myxedema. The myxedema only occurs in about 5% of GD patients. Does it mean that my GD is more severe than others? Also I have had to increase the methimazole because I started getting hyperthyroid (after being euthyroid for about 6 months). The hyperthyroid started about 2-3 months ago. Doesn’t this mean that my TSI is increasing and that the methimazole is not going to cause my TSI to go down?

[Carito71]

#1175559

Thank you all for your responses.

My intensions with the TSI article was to bring knowledge and with it, hopefully some relief by knowing about one of the major things that is causing our disease.

To me knowing that there is something out there that can be pinpointed as the problem is a relief because it means that we (and the researchers looking into it) can try working around it.

I find TSI very interesting because it is made by our own immune system as the article explains. Our own body is making what is causing the problem. In the article shared by Kimberly it says that “Like other autoimmune diseases, Graves’ disease is most likely caused by a combination of genetic and environmental factors that may also determine the long-term prognosis of the disorder.”. I have heard this before with all other autoimmune diseases such as Lupus and diabetes. Something in the environment triggers the gene that turns on the disease. This is something that brings hope because something in the environment could have caused our immune system to start creating antibodies and if so then maybe we can one day figure out what that is (if it is the same thing for everyone … stress perhaps. It might be different for everyone … allergies, an infection …). If it is something that is continuing to cause a problem that something might be able to be removed.

Meanwhile we can assume that if we start taking care of our immune system that it might start behaving better. There is no magic pill unfortunately. The 3 options all have pros and cons but many people with GD live a healthy life after being treated with one of the treatment options.

The way I see it, one needs to choose a treatment as soon as possible, give it some time, if that doesn’t seem to be helping then try another of the 3. While being treated make the changes needed to help your immune system heal. Not much in our body can heal over night. If we have anemia, we have to take iron pills for several months before seeing a change. If we have cancer we have to go through surgery, chemo, etc. If we have a broken arm we have to be in a cast for several weeks. Nothing heals immediately but that doesn’t mean that it will not start to heal or one day be almost as it used to be. All we can do is hope for the best as we go one day at a time. We don’t know how this disease will run its course because unfortunately it is unique to each individual but we can hope that if we try all of our options that we will get better.

On a positive note, I remember reading from one of our members about 5 months ago regarding his/her partner going into remission. It appeared that the TSIs were low or gone and the TSH and free T4/T3 were in normal range. It had taken years, lots of patience, and lots of taking care of the immune system (less stress, better nutrition, etc) if I remember correctly.

Kimberly, thank you for the article about TRab. Can you please help us understand the difference between TRab and TSI? If I understand it correctly, TSI is a subset of TRab. TRab being the thyroid antibodies and TSI the stimulating antibody. TPOab being the non-stimulating one? TSI being a big marker for Graves. TPOab not so much because it is also found in Hashimoto’s. TRab (TSI, TPOab)?

Caro

[Carito71]

#1175560

Naisly wrote:

This is a good article, thank you for sharing.

I will mention this as well, as I’m sure some of you don’t want to hear it, but here goes.

TSI doesn’t go away just because you destroy your thyroid with RAI, actually it makes it worse, because the TSI sees RAI as a threat and will bind to other tissues giving us other autoimmune disease as the article states – thyroid eye disease and pretibial myxedema. Where as the lesser of the two evils surgery will remove a lot of the TSI since most of the TSI stays in your thyroid. But surgery won’t remove all of it. And this is why some people will get TED even years later, much like Shirley here on the forums.

~Naisly

I wonder though, is it more like the TSIs are continuously being made by our immune system and they diminish only when our immune system starts to heal?

For example, when we take the Rx or have our thyroid removed the end result will be euthyroid. Rx will lower the thyroid hormones and if given/taken correctly will put our fT4 and fT3 in the normal range (and hopefully TSH as well). TT will lower the thyroid hormones because there will no longer be a thyroid. With synthroid the hormone levels will get to a normal range. Being euthyroid will cause less stress on our bodies encouraging our immune system to start to heal.

I can see how the TSIs attached to the thyroid are going to be removed during a TT but couldn’t our immune system create more after a TT? I really think that being euthyroid is a key to lowering the TSIs because being euthyroid will lower the stress to our body and to our immune system leading therefore to an immune system that produces less or no TSIs.

I can see how RAI is hard on the body. There can be thyroid tissue in other areas besides the thyroid, or at least that is what I’ve read. It might take multiple tries. Surgery is never easy. Taking Rx is not easy either an can bother the liver and WBCs. I personally think that the Rx is the easiest of the 3. The 3 options will be hard on the body and time will be needed to achieve a euthyroid state but ones euthyroid I believe (and hope) maybe the immune system can start healing and the TSIs diminishing.

Just my take on it ….

Caro

[Carito71]

#1175561

vanillasky wrote:

This is pretty distressing news to me. I had one surgeon I consulted with tell me that TSI would be destroyed eventually but it would take at least 3 years. She was wrong? Makes me wonder if surgeons just lie to get the business so they can do their surgery?

So if we have a “dead” thyroid in our necks or no thyroid because it is removed surgically, we still have the antibodies? This is beginning to really upset me.

Vanillasky,

I’m sorry that the article stressed you. I was going for “here is what causes GD and the positive thing is that we know what it is, now we just need to know how to keep it from happening” kind of thing.

Your Dr. might have had some experience with patients whose TSIs did what he was suggesting. I think it is wrong for anyone to say that for sure someone’s TSIs will get lower in a certain amount of time. I think it would be wise to ask the Dr. how he/she gets to that conclusion.

As for your question, unfortunately, yes, it seems that the TSIs are independent of whether you have RAI, TT, or take Rx, at least at the beginning of the treatment. It might be, and I’m just thinking at loud here, that they get lower after one has been euthyroid for a while. This makes sense to me because as I mentioned above, an euthyroid state would cause less stress on our immune system leading our immune system to start healing and perhaps stop producing TSIs. A healthy lifestyle probably helps as well regardless of everything else.

I’m assuming that research is on going and so I hope that as time goes by we will know more as to what exactly causes our immune system to produce TSIs.

Please hang in there. I know it is frustrating but there is hope. We have to take it one day at a time though. GD is too much not to be taken one day at a time. Every sign of improvement should be celebrated, not matter how big or small it is. One step at a time

I hope the heat intolerance starts to go away soon. I had a “heat episode” last night myself. I truly hate it because it makes it so hard to sleep.

Hang in there.

Caro

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