Forum Replies Created
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Hello Quinnie.
I haven’t had that experience but I can see the twitching happening from being tired. My husband doesn’t have thyroid problems and when he is very tired, like from long hours of work, his eye will twitch. It goes away when he is rested.
Gatorgirly, I believe she said that she had a “complete thyroidectomy in 2010”. That leads me to think that if she lost weight by exercise and her dose did not get readjusted correctly then she is receiving more Rx than needed b/c now her weight is less. I have a friend who had a TT and she has to maintain her weight. If she gains weight she starts to feel sick b/c her dose needs to be readjusted. She maintains a very healthy routine and hasn’t had a dose change in years b/c she maintains the same weight.
Just my 2 cents.
Quinnie, hope you feel better soon. I agree about looking for a new Dr if the one you have is not willing to help you with your symptoms. I had to change mine when I first was diagnosed with GD b/c he wasn’t willing to help. You can also talk to your Dr that you have now and tell him that you prefer trying the lower dose for a while since that is the dose in which you feel better. If he doesn’t want to then ask him to tell you what is the danger in trying. I had to do that once with my Dr b/c he didn’t want to keep me on the Rx. He wanted to take me off. He couldn’t explain it though b/c in reality there was no danger. All my labs looked good at the time and I didn’t see the logic in discontinuing the Rx since my TSI was still elevated and I guess after talking, he didn’t see it either. I went over all the numbers with him. I brought my labs chart that I made and I showed him how good I was doing at the low dose. He went for it and let me stay on the low dose for a whole year. He would see me every three months and write the prescription again
. Sometimes they are so busy and want to go by the lab #s only but we need to be more specific and truly tell them how we feel and what we want. We have to be partners with them in treating our problem. If you show the Dr that you know what you are talking about with charts and documentation, the majority are willing to hear you out.All the best.
Carol
I’m reviving this post
I just recently went to my ophthalmologist and he said that I have more floaters now. He was surprised b/c he said I’m still too young for having that many. He asked if I had injured my eye and I haven’t but I have had floaters since I was a child. The new ones are bothering me. He said that they float b/c my vitreous fluid is still young and viscous and that when one gets old the fluid turns watery and the floaters fall to the bottom but in my case, they are floating. The good news is that everything else is looking good … retina and all. He knows about my thyroid problem and he didn’t say anything about it being related. He actually wasn’t too concerned after seeing that everything else was good. I on the other hand, have to move my eyes around constantly to get them out of the way when I’m reading. It gets pretty frustrating.
One very important point about floaters and for us who have them. If one ever experiences lots of them with flashes of light, one needs to run to the ophthalmologist or the ER b/c it can be retinal detachment that if left untreated can turn into blindness very fast. Hopefully this never happens to any of us.
If anyone has any more information about whether or not floaters are GD related, please share it here. I know its been a while since anyone posted about it.
I know everyone says that they are common and that people get them all the time but since we have an autoimmune disease, I wonder if they are autoimmune related. Like in my case for example … I have had them since I was young and I have a lot now. Just a thought. My husband who is a year older than me doesn’t have them. So, they might be common but not everyone gets them, especially not at a young age (or younger age … I’m not that young … 30s).
Carol
Hello Rasberry. I haven’t really had problems with my eyelashes except for a chalazion that came out about a year ago and that would not go away. My ophthalmologist told me that it was not thyroid related. I had never had it before though until last year. He said that I have problems with the glands around the eyelashes but said that it is common to have that and that it was not thyroid related. All I have to say is that the problem was not there before my thyroid problem. The good thing is that it is manageable. I did have problems with my hair a while ago were it would fall off in patches and I was told by my dermatologies that it was related to my body fighting my own hair. That was before I knew I had a problem with my thyroid. That hasn’t happened in a while and I’m very thankful to the Almighty for that. It was terrible and it made me feel very self conscious. I hope your hair/eyelashes change back to normal pretty soon. Hang in there
I do have to mention that at my last ophthalmologist visit I was told by my Dr that I have a lot of floaters. More than I should at my age. He asked if I had hurt my eye, which I haven’t. I don’t know if it is thyroid related but he didn’t seem too concerned about it. My retina and everything else was fine so he didn’t worry (retina tears or detachment can cause great amount of floaters too). Anyway, … hoping things change for the best for you soon Carol
Hello.
Well, now this is interesting. My experience has been of having vivid dreams and nightmares when I was taken Metoprolol for my heart rate. I discontinued the Metoprolol months ago and the nightmares/vivid dreams went away. Just exactly a week ago I was told that I’m in remission and the Dr. discontinued the Methimazole. I have been having nightmares and vivid dreams the last 3-4 nights. I told my husband that it is so weird because I’m not on any medication. My lab work last week showed normal TSH, FT3 and FT4. So, who knows what is going on. I have been attributing it to eating late at night and then going to bed about an hour after eating. I have also been wondering if this time around it is related to me exercising about 4 hours before going to bed. This exercise routine is something that I just started. Your message has gotten me thinking though. Maybe for me it is the lack of Methimazole? Maybe my body is having withdrawals? I don’t think I’m hypo, though I have to admit that I have been feeling cold at times. I’m worried that if anything is going on with my thyroid at all that I’m hyper. Last night I was moving around like crazy but I was sleeping. When I woke up I had my arms all the way up and was trying to touch the wall
I told my husband that we are having dinner as soon as possible today so that we have more time between dinner and bed time. We’ll see if that helps. I want and need a good nights rest. Hope you figure out what is going on with you and soon can get a good nights rest as well.Carol
Thank you Kimberly.
You are on a very low dose. You are on about 0.4 mg a day. So, if I read it correctly, one can deduce that, according to Dr. Ross, my < 1.0 TSI might even be "noise" and that people without Graves might have a number similar to mine, even though theirs is probably really zero (if using the same lab as mine, who gives a normal range). I know that looking at the autoimmune #s before discontinuing the Rx is important so I asked my Dr. to look at my TSI. He doesn’t care about TSIs. His opinion is based on response to the Rx and TSH, FT3 and FT4 but I was worried that if my TSIs were still elevated that I would get hyper again. I wonder if I should have asked him to look at another autoimmune #. What do you think? Is there anything in the literature about that? I think somewhere it said to look at TPOab? Not sure. I hope looking at the TSI was sufficient. Does your Dr look at other #s other than TSI, TSH, FT3 and FT4? (I’m not referring to liver, CBC, etc but immune and thyroid related). 300 TSI is maybe 3. something or even 4. with my scale … I think. I hope your TSIs start to come down for you. You are on a very low dose though and the TSIs are not bothering you. I find it interesting. Also, I read somewhere that Graves only tends to last about 4 years? Is that true? Or did I misread it. I read it a while back and I don’t think it is true. So many people here have had it active for longer than that. Thank you for your help Kimberly. Carol
Hello Yuri.
Welcome to the forum. I’ve been here since 2012 (on and off) when I was diagnosed with Graves. I’m supposedly on remission right now thought I’m not sure if that is the case. I just went off the Methimazole and I’m waiting to see what happens. I have opened an article in this forum to hear from everyone who has at one time or another been in remission or been told they were in remission and discontinued the Rx. I would love to read your story about the time when you went off the Rx for 3 months.
Here is the article:
http://www.gdatf.org/forum/topic/44030/Hope to read you soon.
Carol
Kimberly, LaurelM – thank you for your replies.
LaurelM – sorry to hear that you came out of remission. Hope all is good now after your TT. Congratulations on becoming a mom.
Hello everyone.
I need to apologize for just now responding to your replies and advice. It was very nice of all of you to reply and leave me so much good advice and well wishes. To all of you who have been here for a while and have helped me out before, thank you
and to all the new ones, thank you too, and welcome to the forum.Immediately after my post my husband and I went on vacation for a week and I wasn’t able to read and reply then. Definitely my mistake for posting and then leaving on vacation but I’m glad that I did because I wouldn’t have been able to later on. Upon our return from our vacation, a family member became very ill and I had to take care of her until today when she had her last follow up appointment and was told that she was recovered. I’m so glad for this for the whole situation was very complicated and she was very close to dying.
Thank you everyone again for your replies. Tomorrow I will have an appointment with my General Dr. and I will share with her my situation. Maybe she can help me with the maintenance of my treatment.
Kimberly, thank you for the information. I will print that article out to take with me. It might end up being that I will have to go with a new Endo.
Shirley, thank you. How is it going? I love this “That is not much different than having thyroid replacement, other than there are some risks, though very small, and mostly at the very beginning, of ATD’s, You know all that.” That is exactly how I feel. My Mom is on Simvastatin and she has to get her liver enzymes tested every few months. Rx will have risks but we take the risks if they are minimal and especially if all seems well with the labs.
Deb, thank you for your advice. Maybe my Endo was having a bad day but he was acting the same as every time I’ve seen him. I will approach the situation respectfully as always next time I see him. I would not loose my cool, I would tell my husband and you all about it but I wouldn’t be disrespectful towards the Dr.
Nicely, thank you for the information. It makes sense. I have written down the tests to give to my General Dr. tomorrow. I haven’t had a TSI done in a while. How are you?
Everyone, thank you again. I’ll keep you posted. Thank God for this forum
Wishing you all the best always,
CaroVanillasky,
I’m sorry you are going through so much
Bad experiences seem even worst during the hyper stage of GD. When I was hyper even music would make me upset and sick. I didn’t want to go anywhere nor do anything. All I wanted was to rest and feel better and I completely understand wanting to first get more stable. It took me about 3 wks to start seeing some positive changes and even then the changes were happening slowly. It really makes one learn patience. It is very crucial for spouses and family member to be patient as well. I had my husband go with me to my appt with my Gen. Dr. so he would understand what was going on. My Gen. Dr. was so nice and kind and explained to both of us that my body was handling too much and I needed a break until I felt better.I think that if you are worried about your yearly exams that you can talk to your GYN about what is going on. The Dr. will understand and might have some suggestions as to how long to wait and still be safe. No one can force you to do anything you don’t want to. No one. Your Dr. can suggest exams, etc, but you have to give consent to have it done. I’m sure your Dr. would understand and work with you on getting your exams when is more appropriate. You know the importance of the yearly exams and also know the importance of getting more stable on GD so you understand these two things and that is what matters. You are taking your Tapazole and that is one step closer to getting better.
Please hang in there. At times it seems like the hyper stage will not pass but it does. Just have to give it time. Being as relaxed as possible definitely helps with your heart and probably even the GD. You mentioned that you are taking a new beta blocker. Is it lowering your heart? You might want to buy a machine to check your blood pressure and heart rate to see if it is working. My first beta blocker was not working so my Gen Dr. changed it to another one that worked wonders. It made such a big difference. A relaxing bath everyday helped me also.
I’m sorry about all that is going on with your husband. At one point maybe it might help telling him that you appreciate his concern and support but that you will take care of the appointments and that you will let him know how he can help you out because right now you need to take things one step at a time. I’m thinking that maybe he is worried about your health? Either way, he should leave the appointment scheduling to you unless you ask him for help on that. I’m just thinking that telling him something to help him calm down but at the same time keep him there for when you need help is a good idea. After all, if he supports you the way you need to, he can be a great support at home. Just thinking at loud.
I hope with all of my heart that soon you start to feel better. Please keep us posted.
Caro
Hello caststuart7,
I’m sorry to hear this. Mine seem a little bit swollen too. Maybe only I can tell b/c my husband says that they look the same. They have also gotten itchy this week. They used to be very itchy before all the GD stuff was diagnosed but after starting Methimazole they got better. Before I always attributed it to allergies. Not so sure is that anymore. I’m thinking about trying the drops recommended here:
http://www.gdatf.org/about/about-graves-disease/patient-education/dry-eyes-watery-eyes-itching-eyes/
The eye mask thing sounds delicious for itchy eyes. Maybe I’ll get me one too. Hope you feel better soon.
Caro
goodfriendjen wrote:Caro, you wrote: Without a thyroid you will no longer experience the hyperthyroid problems if all of the thyroid tissue is removed.Does anyone know what the chances are that they won’t remove it all? Even if there is a little tiny bit left around the parathyroids/vocal cords, will that wreak havoc on my levels?
Hello again,
Some times only a partial removal of the thyroid is done. It is also my understanding that a TT doesn’t mean total removal of all tissue b/c like you mentioned, there might still be some left around the parathyroids. I don’t know if they can ever really remove all of it around the parathyroids. Your surgeon will have to confirm that for you. Also, it is my understanding that thyroid tissue can be in other organs as well, such as the ovaries. Now, how bad it can get with a TT if some of the left over tissue is activated, I guess that will depend on the person and amount of antibodies. It is my understanding that there is no telling how anyone will react until they have gone through it. I would recommend asking your surgeon how much thyroid tissue is left and asking your Endo what are your odds of getting hyperthyroid from it again. I personally would want to know why she wants you to push back the TT. What is her reasoning for doing that?
goodfriendjen wrote:What other GD symptoms would I have to deal with even with a TT? Can you please let me know. I was under the impression I would be dealing with hypo symptoms. Perhaps there is something I don’t know.As Naisly explained, some antibodies still remain (and your body might continue making more) so you might be fighting the antibodies, which affect other organs (the eyes and skin is what we know of), not just the thyroid. This doesn’t mean that you will get any of those other problems but there is chance that all of us might get them. If the theory of being euthyroid leading to a healthier immune system and to less antibodies is true (I personally think it is, it makes sense that less stress on the immune system will help it heal), with a TT or with Methimazole your goal should be to remain euthyroid. Now, with Methimazole you are getting there now, per what your Dr. mentioned to you about remission. With a TT you will have to take into consideration that you will need time to heal from the surgery and time to adjust to the thyroid hormone Rx (you will need thyroid hormones b/c you will no longer have a thyroid).
It would be a good idea to read the experiences of other members who have gone through a thyroidectomy (recent and from years back) if you are thinking about going that route. Also, at this point, since your goal is to get pregnant, I would recommend thinking about how any decision will affect not only your health but also that of the fetus/baby. It is a hard decision to make, I’ve been there. Therefore, I recommend finding out what your fertility clock is doing as well in order to see what your real time frame is when it comes to getting pregnant.
Wishing you the best with your decision.
Caro
Editing was done to correct “he” with “she”. I keep forgetting that your Dr is female.
