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Alexis,
I’m so glad to read that the Dr. has ordered the T3. Looking at you labs, your TSH was working all along (not shot off like mine) so I would guess that it being up now is telling you that you might be hypo. I know TSH is not something to pay too much attention to in my case b/c is almost none existent and it will probably take time for it to work again. In your case though, it seems that your TSH did not get turned off when you were hyper.I have read that it can take 4-6 weeks to feel the change with synthroid. I have also read that can take longer. I guess, like everyone has been telling me around here, we are all different and therefore it depends. Are you taking something for your symptoms? I too hope you don’t go hypo. I remember reading somewhere that someone had started the Rx before the surgery and that they felt better early after the surgery because of that. I don’t know if that is normal/safe procedure though. A lady told me the other day that she has to make sure she stays on the same weight or she has to change the dosage. She had RAI 30 years ago. How is your weight? Are you currently gaining what you lost when hyper? I’m guess that is also another issue when trying to get to the correct dose. I hope with all my heart that soon you start feeling better. Hang in there. Maybe you can ask your Dr. what to take for your headache. Maybe with that under control you can get some sleep. Hang in there.
Keep us posted.
Caro
Hello Harpy,
Thank you for reading me and for your advice. I’m thinking about getting acupuncture to see if I can reduce my stress levels. I don’t feel stress but GD itself is stressful. I have been very stressed in the past (career) and I made changes there to the point that I don’t get stress from that anymore.
My main problems seem to be allergies. There was a time, before the Celiac diagnosis, that I was always sick of my stomach. I had tones of GI tests done and none would find a problem until finally a Dr., who knew about Celiac, ran the correct tests. It took time to feel a difference but I’m doing good now. My allergies though continue to be a problem. I’m allergic to pollens, mold, dust, smoke, perfumes, etc …… I feel like a should live in a bubble … lol
This allergies affect my sinuses and ears. I think this might have been a big trigger this spring.Yes, you are right. Learning as much as possible is necessary with GD. I’ve been trying to research more about the immune part of it. I found something that talked about T helper 2 cells possible having something to due with GD.
Have you ever come across anything having to due with yeast allergies. My immunologist that I mentioned above was big on that. He would say that antibiotics intake would of course kill good bacteria and yeast would grow then since the good bacteria would not be there anymore to compete with it. When I was under his care he had me on a yeast free diet and would recommend minimizing sugar which makes yeast grow. He would say that the yeast would affect all organs in our body and that breaking spores would create toxins that were harmful. He passed away though.
The best with your new diet.
“I’ts all part of our journey, stand tall, you get the best view that way.” … so true.
Thank you,
CaroHello Alexis,
Thank you for sharing your #s with us. I’m sorry to hear that the #s are a little bit off and that you are having symptoms. Could it be that you need a different dose of synthroid? Did your Dr. say anything at all about the TSH being elevated?
Remember how my old Endo would not communicate with me? He also had online communication available and I felt that it was used as a crutch some times. I figured it was better to call and talk to the nurse. At the new Endo they have the nurse call. Have you tried calling his nurse?
I hope soon you get answers and the labs you need and that you feel better too.
Please keep us posted.
Caro
Hello Kimberly and Alexis,
Alexis, how are you doing?
I think you are right about immunologists … allergies and asthma.The immunologist I saw has passed away but he was really into the immune system and things that destroy it.
Eating healthy is definitely necessary. In my case, Celiac disease can cause GI cancer if I eat glutens so I just stay away from them. I’ve learned to eat pretty well with it though. There are all kinds of gluten free products now available but if I stick to vegetables, fruits, nuts, beans, fish, meat, milk, eggs I’m considered to be gluten free
I stay away from breads but I make my own bread, pizza, pancakes. I do buy gluten free waffles at the store though. When I first started I didn’t have all the choices I have now. Notice that what I eat is practically yeast free as well. When I make my bread I don’t use yeast, I use baking soda.The immune system seems to be everything. So many diseases related to immune problems. Lupus for example. They see a Rheumatologist. The Rheumatologist is someone who deals with autoimmune diseases but I wonder if they work with GD patients.
I think I have read in other posts, don’t know where, that stopping the Rx early decreases remission. The endocrinologist’s goal is to get the #s to normal range but he/she doesn’t worry about the autoimmune part or do they?
Kimberly, it sure would be nice to have a Dr. who would understand the whole picture and could coordinate treatment accordingly. But I’m thinking if the problem is the immune system, then maybe that is the key. Maybe the Dr. doesn’t need to know all the details of the disease if he/she understands the immune system.
As for Celiac D., I’ve know people who have it and have all kinds of problems. One lady told me “its like once you get one autoimmune problem, you get a whole bunch of them”
He daughter suffers from Celiac D. and has several other problems that have recently come up. And now me too … I started with Celiac and now I’m here …Kimberly, when you were on the gluten free diet, did you feel better? I certainly do. My stomach used to be such a problem for many years before I went on the diet.
My hope is that one day we can figure out how to heal the immune system and that way cure/avoid autoimmune diseases. Call me a dreamer but we also dream about a cure for cancer.
Thank Alexis and Kimberly for your messages
I’ve read the same thing as Alexis.
I had been using Claritin for 3 years until I got sick last month. I used it because my eyes would get itchy and my ears would feel like I was under water. The Claritin would help for the eyes but not the ears. When I got sick I stopped and my eyes haven’t been itchy much, which I find surprising. When they get itchy now (only twice in one month) I put an ice pack on them and it helps.
My Endo did not tell me not to use Claritin but my Primary Dr. said that it would just dry my eyes. She gave me a nasal spray instead for my ears because they constantly feel like I’m under water.
As I was writing this message, my Endo’s office called. I asked his nurse about the Claritin and she said I had to be very careful with other medications and the Methimazole and that they did not recommend I take it.
One other thing, I read on the internet that there are natural antihistamines. Now, I don’t know if it is true or not but they listed Vitamin C and Omega 3. I take flax seed with my cereal and oatmeal. It contains Omega 3 and it is really good.
Ahovis34,
Hello. Welcome. I just read your post. I was so sick since June 8 but I’ve started to feel better and therefore I’m reading other people’s posts.
I’m so so sad to read about your daughter. I do hope she feels a lot better soon. I have a cousin who is 30 y/o now. She had to have her thyroid RAI when she was a little girl because of hyperthyroidism. She takes medications now of course to treat her hypothyroidism. I don’t know why she had the RAI. She was just a little girl and for what I have read, they don’t do/don’t recommend RAI on children. I see her once in a while and I haven’t kept in touch with her that much. Finding out that I have GD has made me think about her.
I found several links on line but I’m not sure if I can post them here. What I did was type “cyclic vomiting syndrome” and they came up. There is one that is an association.
PubMed posted something in 2009 that said that they were reporting the first two cases of cyclic vomiting syndrome in Lupus patients. Lupus is an autoimmune disease. GD is too. Maybe there is a relation. I have two other autoimmune problems and my Dr. said yesterday that it made sense b/c I already had two autoimmune problems.
I hope little Taylor gets better soon.
Keep us posted when you can.
Caro
Hello Bri,
Waiting 6 months would be frustrating for me right now since my #s are still high. Maybe he’ll make changes later on when things are more under control. You do get labs often, right? And the nurse calls you back? Is good to get your liver and white blood cells checked since those are two things that can change with the medications we take. Thank you!!
How are you feeling? Are you feeling any better?
Caro
Hello Angelamercy,
I’m sorry you are still having problems with your eyes. I don’t know much about the prognosis for eye problems when the thyroid is removed but I think, and don’t quote on that, that I read that even though the thyroid is removed that the antibodies that attacked the thyroid and eyes are still in the body and can continue attacking the eyes, skin … Like I said, please don’t quote on that for I don’t remember where I read and I might be wrong. Maybe one of the more experienced people will come in soon and help you with your answers.
As for cigaret smoke, there is not a single chemical (4,000 of them) in it that will not cause problems to the body. As for eye problems with GD, if I have to guess, it is probably both … smoke and nicotine … plus all the others. But again maybe one of the more experienced people will come in soon and help you with your answers.
Hope you feel better soon and find the answers and treatment you need to get there.
Caro
Hello and welcome. You can call me Caro.
I’m new here too. Arrived about a month ago after having gone to the ER with tachycardia.
You have been and are going through a lot. I hope very soon the #s are were they need to be for you to have your thyroid RAI, or removed if you decide to go that route.
Does your Dr. order liver ALT and AST tests as well? Didn’t see them mentioned so I thought I would ask.
I’m on Methimazole also (Yesterday was the beginning of my 4th week on it). 30mg a day. I posted my new lab #s today for it seems like my FT4 is starting to decrease.
Kimberly and Alexis have given you good information. I think that if given the option between RAI or surgery that I would probably go with surgery.
Thank you for sharing your labs with us. I went through all of them. What can I say …. I like looking at labs
Wish you the best!
CaroHello Kimberly,
You are right … we are all different 😎
Wouldn’t it be nice though if we could predict things a little bit … Wow, even with identical twins? That is why I tell my mother and my sister to get their thyroid checked b/c they might be affected by thyroid problems even if they are not as bad as mine.
Thank you for the information about the T3. So that I understand it correctly, it is T3 and not FT3 that they are talking about, correct? Did they say what is done when T3 remains elevated but FT4 is lowered?
Thank you!
Caro
