[Carito71]

in reply to: * Undestanding Thyroid Stimulating Immunoglobulins (TSIs) & GD * #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

[Carito71]

in reply to: * Undestanding Thyroid Stimulating Immunoglobulins (TSIs) & GD * #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]

in reply to: * Undestanding Thyroid Stimulating Immunoglobulins (TSIs) & GD * #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]

in reply to: Diet & Graves Disease #1175368

HelenYH wrote:

Carito71 wrote:

Fellow GD patient diagnosed June 2012 with a non-existent TSH, elevated fT3 and fT4, and a TSI of 4.5. On Methimazole 30mg/day for the first 8 weeks. On Methimazole 10mg/day for the next 6 weeks. On Methimazole 5mg/day for a week and a half. On Methimazole 5mg every 4 days for a month. On Methimazole 2.5mg/day starting Nov 15. Current labs show a normal fT4, a normal TSH, and a TSI of 3.2. Diet: Gluten and yeast free. Love to read and learn. Very interested in the immune part of GD ~

Carito71, When in the treatment regimen did you cut out gluten, yeast and soy? I am off all 3 except for 1 day a week. Not sure if my goitre is a little smaller now after 2 weeks of doing this change in my diet. I have been exercising for years now, long before my thyroid issue. I think stress has a big part in triggering it too.

I too was during a lot of stress when my thyroid issues began … or at least when they were diagnosed.

I’m allergic to Gluten and yeast and was off for many years but I started eating yeast again the month prior to getting sick. I was feeling so well that I started to doubt my allergy to yeast. I had “gluten free” pizza at a pizzeria but they couldn’t make it for me yeast free and well, like I said above, I was doubting my allergy anyway. I had it several times that month. I think maybe I had gluten too being that it was pizza and it was baked in the same place as wheat pizzas. Anyway, a month later I was very sick. I haven’t had yeast since then again so it would be since June. If I had gluten those times then the same for gluten but I had been gluten/yeast free before for many years. I’m not off the soy completely. I like tofu and I eat it once a week but in very small amounts and less than I did before getting sick. Like I mentioned earlier, the month before getting sick I started drinking one glass of soy milk a day. I stopped that in June also but I do have the tofu as I mentioned. I’m completely off the gluten/yeast because of my allergy. Gluten really makes me sick so I can’t have it. Many years ago when I went Gluten/yeast free it took several months before I could feel better from the allergies. Back then my stomach used to bother me all of the time.

Did you start the gluten/yeast/soy free diet to see if it helps with GD or are you allergic to any of them? There was an article in Yahoo about a month ago that talked about wheat and how it is so different now from the wheat that was eaten many years ago. It said that now it is toxic to humans and causes a lot of problems.

I have read that people with GD can also have Celiac (Gluten allergy) because they are both autoimmune diseases.

[Carito71]

in reply to: Heartburn #1175540

Hello. Welcome.

I had terrible heartburn and stomach discomfort before I was diagnosed as being allergic to Gluten (wheat) and yeast. Once I became Gluten/yeast free, I started to feel a lot better. Some times people with GD can have Celiac (Gluten allergy) and vice versa. They are both autoimmune diseases. You might want to have your Dr. test you for Celiac.

Caro

[Carito71]

in reply to: Few things to help you feel better. #1175498

Thank you Naisly. A healthy lifestyle will help our immune systems no doubt.

I eat chocolate but I stick with dark chocolate and I don’t eat it every day. I’m highly allergic to things that are too processed so I watch for that. Coffee only on the weekends (and I’m trying to cut that also).

Many things can be triggers when we are highly allergic so I try to stay away from dusty things, mold, and processed foods. I’m allergic to carpet so we don’t have carpet at home (and I’m so glad that we don’t have it at work either). Allergies are immune related.

Also, trying to minimize infections is important so I make sure I take my vitamin C. I floss my teeth daily (or at least every other day) and visit my dentist every 6 months (it sounds very common sense but some people don’t do this and it is very important). Hand hygiene is also very important to prevent infection. Infections can weaken the immune system and it is believed that it can lead to autoimmune problems. Graves is an autoimmune problem.

Exercise helps lower stress, so also a plus.

Keeping a journal is a great idea. I’ve been keeping a type of one but I need to start on something more detailed. I do keep track of my labs and I’ve even made a chart to see how things are changing.

As for remission, I’ve read the same thing. One is not in remission unless the TSIs are very low or gone. If one is euthyroid and stops the Rx while the TSIs are up the TSIs will continue attacking and the thyroid hormones will increase again. My Endo also told me this last month.

Also, I believe there has been research done that showed 50% remission when taking Methimazole for 5 years. I’m assuming this is also with TSIs that are very low or none there at all. This is, if I understand it correctly, what is done in Europe. In the US is only 2 years and the % is 20-30% I believe. It makes sense for it to be low at 2 years for perhaps during that time not many have gotten rid of their TSIs.

I read somewhere a few months ago and I don’t remember exactly where but I read that it is thought by some that remission might be achieved by being on the Methimazole or by being euthyroid for a while. If I remember correctly remission had been achieved by people euthyroid on Methimazole and by people Euthyroid on thyroid hormones after a TT. I have to look for the article because I don’t remember the details so please don’t quote me.

Thank you for the information. There is no magic pill to heal the immune system but we can help it heal by taking care of it. It takes time to heal (some times lots of time) and the effort on our part.

Caro

[Carito71]

in reply to: FT4 and FT3 question #1175521

Very interesting!!!

I think that TSIs and antibodies need to be taken into consideration.

I personally see the immune system (WBCs, B cells, T cells, etc) as the one that is in need of repair and the TSIs as the attackers. The thyroid and its system is just an innocent bystander. The pituitary, hypothalamus, TSHs try to do their work but the TSIs just keep getting in the way.

I don’t know what to compare the TSI with in Naisly’s scenario. A chipmunk infestation that keeps tampering with the furnace perhaps?

I have to think about the whole situation some more.

If I understand Naisly’s comment correctly though, the FT3s are the product of FT4 minus an iodine. Many things can happen between going from a FT4 to a FT3 I guess.

I haven’t answered the question, I know. I just wanted to add the immune system and TSI into the equation. I’ll do more studying soon and maybe contribute some more.

Caro

Good article I thought you would be interested in:

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

[Carito71]

in reply to: TT #1175480

Wow … I hope that your husband is doing better. Maybe stress triggered it for you. Extreme stress can hurt the immune system.

[Carito71]

in reply to: Diet & Graves Disease #1175366

Genetics … we all have some of that. Some people have genes that never get activated so when you think about it, we can have the genes for something but it is until something triggers them that we develop the problem. At least that is how I understand it.

[Carito71]

in reply to: Saw Endo this morning–off Methimazole! #1175234

I’m so glad you are feeling better. Congratulations on the 5K!

I’m feeling better overall, though today I’m feeling very tired. I ate something yesterday that gave a minor allergy and that always makes me feel tired. I’ll be okay though.

Caro

[Carito71]

in reply to: What causes a bad day? #1175453

I completely hear you. I have felt that hot myself. I have stuck my head in the freezer several times to cool down … lol!! It works. I hate the feeling. I’ll be seating at my desk and all of the sudden I’m burning up. Its terrible!! I too have day dreamed of many snowy days and open windows I’m so happy the weather is gotten cold now. I’m enjoying it a lot. Especially at night. A cold glass of water right when I start to get hot helps me a lot. I attribute my heat intolerance to my thyroid but it could be my female hormones as well. It all seems to go hand in hand.

I don’t recall my Mom feeling hot during menopause but she didn’t share much about it. She tried to be strong about it.

Hope it snows soon.

Caro

[Carito71]

in reply to: Does RAI effect parathyroids? #1170722

How interesting. Thank you for the link Naisly.

Here is another interesting article about RAI, its effects on eyes, ovaries, and bone marrow.

http://www.cancer.org/cancer/thyroidcancer/detailedguide/thyroid-cancer-treating-radioactive-iodine

There is no treatment without risks.

[Carito71]

in reply to: FT4 and FT3 question #1175516

Hello!

Good question. I don’t know but I’m interested in reading what others might know about the subject. My Endo hasn’t run labs for FT3. He only runs TSH and FT4 (WBC, ALT also). I remember reading a few months ago that the FT3 and FT4 kind of move together so if one is up the other one is too. Reason why I haven’t asked my Endo to run FT3. Maybe I should ask for it.

Caro

[Carito71]

in reply to: Diet & Graves Disease #1175364

What an interesting topic.

What causes GD is the Million Dollar question.

What triggers it? What causes the TSIs to start up? What causes them to get elevated? What causes them to decrease?

I personally think that anything that can alter our immune system might be the thing that triggers it. Maybe and infection (I have read that some research says that this might be a cause), maybe a weak immune system due to lack of nutrients. Maybe it is a drastic change to our body such as a very different diet.

Looking back, there are few things that I can be suspicious of and think of as the trigger for me. If I had to list them, these are it:

I did too eat more soy the month prior to me becoming sick with a hyperthyroid. I started drinking soy milk every day. Something that I had never done before. I don’t drink soy milk anymore just in case and I have also lowered my soy intake.

I also started eating yeast. I had been yeast free for years but I started up again the month prior. I don’t eat it anymore just in case.

I had developed an ear problem. Maybe an infection. I mentioned it to my Dentist and my General Dr but neither one thought it was an ear infection.

I few months prior I had had fertility treatment to get pregnant. I think this might have been it if none of the above.

Maybe all of the above led me to where I’m today. Maybe it is not one thing alone but a group of things.

The truth is that if we don’t ask the question and we don’t compare what we know, we will never know the answer. We are not scientist and probably cannot come up with the answer on our own but we as patients can help by continue to ask the question …

What is true is that no matter what causes it or what does not, we need to maintain a healthy diet and a healthy daily routine. Our immune systems might be damaged but who is to say that they can’t heal with a healthy nutritious diet and a healthy lifestyle.

As for me, I’m off the yeast, the gluten, I’m consuming less soy, I’m getting some exercise (I need to increase this), I’m trying to get a good night sleep every night, I’m taking my vitamins including B12, and I’m trying to maintain a healthy level of stress. Maybe down the road my immune system will start to heal.

Caro

[Carito71]

in reply to: TT #1175478

It is amazing. What I find more amazing is how little some times Endocrinologist know about it. They seem to concentrate more on diabetes.

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