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Hello.
At the moment I’m on Methimazole and hoping that it will help me achieve normal levels. Once there, I will have to decide if I continue with the Rx in hopes for remission or if I go the RAI or surgery route. I haven’t investigated everything well but I would like to continue with the Rx in hopes of remission. As a second choice, I lean more towards surgery. I’m not too comfortable with the radioactive option. My TSI was elevated and I’m afraid of how it will affect my eyes. Also, I’m afraid of the radiation itself.
One of the things with surgery is that you will always be told the negatives. And if not, you should. You can only make the best decision if you know the risks as well …. An informed consent form will have to be signed by you before the surgery. The nurse will help you with that but is the Dr. who has to explain everything about the surgery and I think that is what your Dr. is trying to do for you.
I guess you will need to make a pros and cons list and decide what you could live with.
Wish you the very best with your decision. GD is so complicated and makes us make hard decisions. Please keep us posted. I would love to read what you decide and why.
Caro
I have had liver labs done several times since I started taking the Methimazole 30mg/day 6 weeks ago. I get it tested again in 2 weeks. I guess my Dr. too rather err on the side of caution. He is also asking for a WBC. My liver #s were high before starting the Rx b/c of being hyper. They went down on their own only on a beta blocker. Last time they were checked they were still a little bit elevated but my Dr. was not concerned.
Just as an FYI – Another sign of liver problem is acholic stools (light color stool).
I’m glad your liver panel was normal.
Hello Naisly,
Welcome to our forum. I have read your story and I can only imagine what it most be like to be afraid of the very things that can make you feel better. I don’t have any phobias. I’m concerned at times about how the medication will affect my body at times and do minimize medication intake as long as it is not going to hurt me not taking it. For example, if I have a headache I might try using an ice pack instead of taking Tylenol because I worry about it hurting my liver but if the headache was strong enough that made me uncomfortable, I would take it. As for the Methimazole for the thyroid, I didn’t give it a second thought because I know that without it, I would be very very sick and probably even die since it affects my heart.
I don’t really know what could be done to help you with the phobia part other than seeing a psychologist/psychiatrist but you are sick with GD right now and right now you need treatment for it. It is unfortunate that to help you with the phobia you have to take medication. I know that another way to help a person with a phobia is to expose them to the very thing that gives them the phobia. That might be the reason why the Dr. is telling you to take the pill to help you with the phobia.
The thyroid situation is something that has to be treated though. I wonder if they could give you something like Versed before doing the RAI or right after it (RAI = drink to radiate your thyroid). Versed will help you relax, it can be given through an IV (through a vein, not ingested), and it will help you not remember the procedure. Just a thought. Maybe you can talk it over with your Dr.
By the way, and Endo is short for Endocrinologist. You see, the thyroid is an Endocrine organ and so an endocrine specialist would be an Endocrinologist. In the US we see a specialist and the one we see for the thyroid is the Endocrinologist. Once things are balanced we can see a general Dr. who is also aware of what labs to run and aware of the Rx to take …. like synthroid.
I’m so sorry you are having to go through all this. It sure doesn’t make it easier on you having the phobia you describe. Please keep us posted. It is very important that you get help as soon as possible because the thyroid problem cannot go untreated.
Wish you feel better soon,
CaroMy Endo told me I could take Tylenol but knowing how Tylenol can affect the liver and how so can Methimazole, I just haven’t used it. I didn’t ask about the alcohol though since I don’t drink but I’m taking beta blocker and I know that I can’t with that.
Alyk, like you said, maybe you will be off the Rx next year or if not then you will at least know how your liver is behaving with the Rx.
I have seen people with liver transplants and waiting to get a new liver. I sure don’t want to go through that.
Tomas,
I’m sorry to hear that she is seeing someone else. Like anything that adds to our emotions, GD, cancer, a baby, doesn’t matter what, a disease will only intensify what ever is going on in the relationship … whether good or bad. My personal opinion is that it is time to move on. She has chosen to be with someone else and as hard as that is, for your own health and well being, I personally think it is time to move on. I wish you both the very best. Like I said … I believe time will be your friend on this one.
Caro
Hello Alexis,
I’m so so sorry you had such a bad experience at that party. I guess it is best to keep our medical problems to only those people we fully trust and who understand because they are/have gone through it and to our Drs.
As you know, I’m still on Methimazole and have not had any experience with synthroid but I do know a friend who had RAI 30 years ago. She told me that she has been on synthroid for 30 years and she is doing great. She told me that she has been on the same dose for a while. She said that all she has to do is watch her weight so that there are no fluctuations, which would require her to have a different dose. She takes it and is happy with it. She is in her 50s now and her thyroid problem developed after giving birth. I believe she told me that her son was 3 months old when she had her thryoid RAI.
Hang in there. Talk to your Dr. about your T3/synthroid concerns. And … remember, you have gone through a lot in less than 1 year. Your body will need the time to recuperate. I hope soon you start to feel a lot better. So glad your husband is a great support system and that your children are doing well …. and hope your son soon feels better about his asthma.
Please keep us posted.
Caro
kms1246,
I’m too wishing you and your son the very best for tomorrow. Please keep us posted. You both will be in my thoughts.
Caro
Welcome to the forum.
I’m sorry your girlfriend has been diagnosed with GD. She is going through a tough time and it can be a very hard time for those who love her as well.
You stated that she is taking her medications and I believe she is probably then also seeing a Dr. and getting the medical help she needs. I hope that is the case.
My personal opinion is giving her time to feel better and to actually have the strength to think about the relationship. I know that it is hard to do but you said you love her and she said she needs space and time and therefore, since she has asked for it, I think you should give it to her.
Before she leaves, let her know that you love her, let her know that you made a mistake but that you have corrected it by getting informed about the disease and joining a support group, let her know that you will be there to support her when she needs you. Give her time and don’t concentrate on how her diagnosis/symptoms could have added to the arguments because that is the last thing she wants to hear. You have mentioned it to her and there is nothing else you can tell her about it. Give her the support she needs by letting her know what I mentioned above. Well, that is just what I think might be appropriate at this time since she has asked to be left alone. Only you know the situation and only you are the best judge to decide what to do. Her health is the most important thing at the moment in my personal opinion.
I believe that time will be your friend on this one. As long as she is taking care of her medical needs I think you should support her by giving her the time she is requesting. There is no worst feeling than feeling sick and having to deal with a lot of other things around you. The best thing my husband has said to me is that he is and will be there to support me. Daily hugs and daily understanding is a big plus …. especially at the beginning when we are trying to learn how to cope with everything. Believe me, this disease makes us feel very very sick. I know that I have had to give it my all to carry on with my life and deal with the disease. It is not easy on anyone. I know that the less I had/have to worry about at the moment the better. Your girlfriend might be thinking the same. I’m also new with the whole thing so I’m still learning how to cope with it all.
I’m glad you have joined us. You will find support here. I hope with all my heart that your girlfriend will soon feel a lot better.
Caro
Hello,
Kimberly, I mentioned it to my primary 2 weeks ago. At the time the problem was not bothering too much and she prescribed Fluticasone. I thought it would clear on it own and so I waiting before using it. Monday when I felt a lot worst, I started using it. I’m trying to get an appt with an ENT right now and I have left my Endo a message letting him know. Thanks.
Shirley, did you have problems with your ears as well? I sure hope it helps. I’ve been on it since Monday. Thanks.
Alyk, thank you for the advise. I used to take Claritin before the thyroid problems were diagnosed but now with GD I can’t. I’ll as about the antihistamine spray Patanase. You are right, Fluticasone is the generic for Nasonex, I believe
Thanks.Jules, thank you for letting me know. Hopefully it is not related to being hypo. I’m on a high dose of Methimazole at the moment and even though my #s have decreased a little bit they are probably still pretty high. I have my labs in a couple of weeks though. I would hate to add one more thing to my GD list of issues. Thanks.
Caro
One more thing ….
I know your are struggling with weight issues but I do recommend a healthy diet. It helps us get energy. I know that when we are tired we tend to want to eat something that will give us a boost … usually something sweet but in the long run we end up feeling tired. So we need last of veggies, fruits, beans, nuts, fish, chicken, protein, etc ….
I’m having to eat a lot lately because in 1 month I lost 10 lbs. My body needs the protein and that is one thing I was told by my Dr. to eat a lot of. I buy protein bars from the store and eat them as snacks. I’m allergic to Gluten so I buy the gluten free kind.
Did your Dr. tell you what to do regarding exercise? Mine told me to limit my activity and that I could not exercise until he gave me the go ahead.
Hope this helps.
Caro
Welcome to the forum. It is sad that you have to join us but if you are going to have GD this is a good place to get support
I’m new too. I joined about a month ago. I’m also on Methimazole 30mg/day. My TSH is almost non existent and my FT4 and FT3 are high. My next appt is in early August when I will get labs as well.
I do feel better at times and tired/non well at others. I do what I need to do when I get the energy and then lay low when I get tired. I know it is hard to do with work but it is good that you are on summer vacation right now. I think our bodies need the time to heal and sleeping is very much needed. I don’t know about you but I had 2 weeks of insomnia and well I still wake up some times at night and can’t go back to sleep so making sure I get my sleep is important.
I hear you. I had to tell my husband the other that I pretend to be normal because that is what everyone else expects but that I’m not … not yet (I’m hoping to be normal one day). He is super understanding but even then he forgets at times that I’m doing everything in my power to carry on with life and GD at the same time. As I write to you right now, I’m struggling with ear problems and I too feel tired. I could probably sleep a couple of hours.
I agree with the other messages though. If you have had a drastic change you should run it by your Dr. I don’t want to scare you but I’ve read that feeling tired when on Methimazole can be a symptom your Dr. wants to know about b/c it could be liver related. Anyway, you are probably just tired from everything. I know I Am but run it by your Dr. Also, I don’t know if your Dr. told you this but while on Methimazole we need to stay away from people with colds, the flu, sick b/c they can pass it to us. Also, we need to stay away from people who have had a live virus vaccine, like Polio vaccine (oral), smallpox, varicella zoster (shingles – Zostavax).
I hope you feel better soon. I know that the Methimazole doesn’t seem to help right away (took me about 3 weeks to start feeling a change) but I’m told that there is hope for a recovery.
Keep us posted.
CaroHello Debbie.
I hope you feel better soon.
What a battle we have to be constantly fighting. I’m like you … I want it to end already. I have just started though and I’m happy to say that I’ve been on Methimazole for a whole month tomorrow
Last week my #s were still high. Almost as high as when it all started but I’m feeling better. I wake up every morning praying that good things continue to happen. Today I woke up feeling like I’m at the bottom of the ocean. My ears …. what a problem.
Caro
