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Kimberly,
Thank for recommending this link. I saw it in another post. I wasn’t here yet when it was originally posted so I missed it but I’ve been looking for information on this subject. I too I’m very interested in this topic. I see my Endo in a week and a 1/2 and I’ll be on my 7th week of treatment with Methimazole then at 30mg/day. I’m hoping that my # are low enough for him to recommend a lower dose. The Endo that I was seeing at first put me on the 30mg/day on June 18th. I since then changed Endos but the old Endo wanted me to stop the Rx July 26. If I had stayed with him I would have already stopped it. We’ll see how things go at my appt. I’m scared the #s will not be low enough.
Do you know exactly why the Drs prefer only 12-18 mths? Is it all b/c of the liver situation?
When they started you on the Methimazole, did they start you at a large dose as they did me? How fast down the road did the Dr. lower it? Just curious.
I’ll check out the other links you posted.
Thank you!
Caro
Kimberly wrote:Hi all – Just a quick note that TSI and TRAb are actually different antibody tests with different reference ranges.Thank you Kimberly. Is TRAb the same as TPOab? TPOab is the one I was thinking might be the same one.
Caro
Bobbi wrote:I stick around here on this bulletin board, not because I still consider myself sick, but to give those of you who are in the throes of battle with this nasty disease a bit of hope. No, to give you LOTS of hope. I know how ill you feel, or how downright scared you are with the eye disease. I’ve been there. I was dreadfully ill. But, I am the norm. I am like thousands of other people who, through one treatment or another, got well again. Our treatments work to give us back our health. Please keep that thought firmly in your minds while you are casting about for what treatment option to choose. They are ALL better than remaining hyperthyroid.Thank you. It does give us LOTS of hope. I know it did me when I was super sick a month ago. And it still does now when I’m starting to feel better. Please continue sharing your experience Bobbi.
On a positive note, even though I’m afraid of RAI and lean right now towards surgery as a second option if the medication does not work for me, one thing that does attract me about RAI is that I’ve read that there has been a small % of people who have become euthyroid after it without having to take pills. It is a small % but I like that about it. One never knows if one would be in that small %, right?
Caro
Alexis,
Thank you for your response. I feel like I do trust him and therefore I’m still taking the Methimazole
He was highly recommended but you know how it is, one worries and wishes/hopes for the best and well … having the elevated ALT scares me. I have met people who needed liver transplants in the past and I wouldn’t want to be there, you know? …8 times the normal in just 7 weeks … wow!! I’m on the 6th week right now, so next week when I get my labs will be the 7th. I’m hoping for the best.
As of right now, I’ve only taken Tylenol twice and only 500 mg. I haven’t had any pain thank God but the other day I did get a headache and well, I went for it. The headache was starting to turn into a migraine. I hate migraines. I will follow your advice on the Advil. I don’t drink alcohol so I’m good on that. You know, before I was diagnosed I was taking a lot of Tylenol. I was getting headaches all of the time. Probably all related to GD.
Yes, I don’t want to try PTU. It scares me. I hope I’m not one of the 1% and that my ALT is either stable of lower.
I’m so glad your surgery went well and that as far as the surgery goes you are doing excellent. One less load off your shoulders, right?
Thanks again,
CaroVanIsleGal wrote:Hi Caro!I think it is the same antibody test! http://labtestsonline.org/understanding/analytes/thyroid-antibodies/tab/test
They don’t use it much here. I think the test is expensive and it takes a couple of weeks to get the results back. For me, it was sent to Vancouver and I live in Victoria, on a big island near Vancouver and Seattle in Canada.
Since they don’t advocate for remission here my 3 endos have never given me info about remission. Are they more supportive of remission where you live?
Keep us posted too! Take care of yourself! xoxo
So it is the same … thanks for looking that up for me. You live in a such a beautiful place. I visited Seattle a few years back. All around there is beautiful. I don’t know how supportive about remission my Dr is going to be b/c I just started the journey but I’ll get a better picture when I see him again in 2 weeks. I live in a small town so here were I live there are not many Endo Drs. unfortunately
and at least one of the few is not at all into GD (he is into diabetes instead). The one I’m seeing right now does have several GD patients and his nurse just had a TT but she does not have GD.Caro
Hello Darcy43,
I’m still new to all this and I’m still on Methimazole but I also lean more towards surgery if I have to choose.
On a positive note, I know a lady who had RAI 30 years ago and who is doing great. She hasn’t had to change her synthroid dose in years. She tells me that she keeps her weight the same and that does wonders for her with the synthroid. She recommended RAI to me.
I’m afraid of the radiation and that is why I lean towards surgery but my goal at the moment, if the Rx is working, is to continue taking it to try to achieve remission. Is your liver showing signs of stress? Maybe a second opinion might help. I’m not sure if in the USA there are zero Drs that would continue you on the Rx at a lower dose but it is worth finding out. I haven’t researched it yet b/c I need to first see what my Endo thinks about long term treatment with Rx.
Anyway, not much help, sorry. Hope soon you’ll find the best answer for you.
Caro
karebear wrote:Great attitude!
While I am newly diagnosed with graves, I am not new to serious health problems. I swear being positive helps me feel better. I am thankful to be alive.
KarenHello Karen. Me too.
I’m also new to GD but I have gone through a lot all of my life. At one point I was even told I had Lupus, which after several visits with Rheumatologists I was told I did not. All of my life as far as I can recall, I have had to visit Dr.’s many multiple times a year. Many times with no explanations as to what was wrong with me. It gets old as they say. Not all Dr’s have the art either to help the sick. When I was told I had GD I was so glad it wasn’t cancer and that I could take Rx for it and that if that didn’t work I had other treatment options. I felt crushed for several weeks b/c I felt like once again I was getting the short end of the stick but then I decided to start moving on with what I had each day that made me feel happy (a few moments here and there of feeling better), just like I had before with my other health (immune) problems. I pray constantly to be able to keep a positive attitude. It is not easy when one knows that one can feel sick or even sicker down the road but I tell myself to take one day at a time. It is very hard but a little positive attitude is an option to help us get through the day, right? … at least it is for me and my loved ones. I also give myself a break to realize that there will be moments that the positive attitude might go out the window and giving myself that break helps me continue having a positive attitude, if that makes sense … b/c we should be able to feel down and cry also during the harder times. We are going through something that takes both body and mind to go through it in life. We are our own cheerleaders so many times. I’m glad that I have been able to cope with my other immune problems b/c the experience is helping me with GD. So glad you have found us.
Caro
adenure wrote:No one thinks my headaches are hormone or Synthroid related…
:rolleyes:
AlexisThen what?
adenure wrote:I’m hoping the Synthroid dose increase will help some. We’ll see…
AlexisI forgot all about the increase. I’m so glad you got it increased. If it is your hormones causing the headaches, I’m hopeful you will soon be letting us know your headaches are gone
Like I said, my aunt gets headaches when she doesn’t take her synthroid and I think I’ve read that headaches can be a hypo symptom. So …. lets hope for the best.Caro
I love this post!!!
Thank you Jules. I’m so glad you open this discussion.
You are so right. As we all know, it is easier said than done, especially when we are feeling sick. I recall how I felt at the beginning of GD in early June. I was so scared that I was dying and then when things got worst, (even though I was taking the Rx I was still feeling very very sick) I was worried that I wasn’t dying soon enough. I was anything but positive about the whole thing. I had a flat affect and felt sad all of the time. One day I decided I would start enjoying the few minutes a day I would get when I wasn’t feeling like I was about to pass out. I decided to do something that I liked even if just for a few minutes. I guess I started to have a positive attitude. I would watch a movie or eat something I liked. Then when I started to feel sick again I would just lay on the couch for hours until it passed. It went on like that for several weeks. Finally one day I felt like my energy was coming back. At that point I felt so blessed that I have had a positive attitude ever since. Every time I walk by a mirror I stop and think about how much better I look (got some color back) and I pray and give thanks.
I think this experience gives us a gift and that is the gift to be thankful for the many blessings that we have, even when sick.
The other day at my Endo’s office they were showing a documentary about two children who have a disease called progeria. This disease is very rare and not many children have it. I say children because the children that do have it don’t live very long. They become old in a matter of a few years. They suffer the same problems an elderly person does but they are only children. Their bones become brittle and start collapsing in, etc. Watching the documentary while I waited in the waiting room made me sad but also made feel very thankful that GD is something that we can treat and even get to a point when we feel somewhat normal.
It is a hard road and it gets harder at times but when we look around we can still see that we are blessed.
Thank you for the post Jules. We needed it
Caro
adenure wrote:I want to feel like Mary Katherine Gallagher: “Supah Stah”!!!
lol!!! Me too!
Alexis, I was thinking, maybe it is more of a pituitary thing what is going on with your TSH?? Have you had any other labs done? Such as Prolactin? I don’t know, just something to keep in mind. I know it has only been 6 weeks and it is probably your body just getting used to things but thought I would mention it.
As for the headaches, what is your Dr. saying about it? It has been several weeks since you have been complaining of headaches. It most be be so so frustrating. Do you have a general Dr. who might help you out with trying to figure out the source of the headaches? I have one right now and I was thinking about how you most feel day in and day out with a headache. I hope you get better soon.
Caro
Alyk,
Yes, congratulations!!!!! I’m so glad you made the decision to stop smoking. I have never smoked and I’m very allergic to it (I’m allergic to many things) but from what I hear, it is very had to stop, so … congrats … keep it up.
So glad the antibodies tests were all normal. It sounds like your only thyroid problem is the nodules.
My one concern is that your #s are close to where they were 2 years ago with the Tapazole 10mg/day so even though the amount is small maybe it is keeping your #s there. Since there are no labs from right before you started taking the Rx there is no way to know. The good thing is that your antibodies are normal (TSI, etc). Since they are normal there might be a lesser risk with you stopping to see if your #s change. You can run this by your Dr. at your next appointment.
As for the liver, 10mg/day is a small dose. I’m on the 30mg/day and I believe the max is 60mg/day. But we are all different and even a smaller amount can affect some people more than others. You said that you had a general workup from your Fam. Dr. and what I think you could do is call your Fam. Dr.’s nurse and ask for your liver function results, which were probably done with the general workup stuff. If ATL, AST is normal, I wouldn’t worry too much about the liver. If you are not jaundice, if your stool is not acholic (light color), you are not nauseated, vomiting, or have pain in your right upper quadrant then I wouldn’t worry too much about the liver.
As for the inaccuracies in the doctor’s notes, yes, ask them to fix them. They made some mistakes in mine at my old Endo’s office (no longer my Endo). They even put in my file that I had hypothyroidism. So yes, they need to have the correct information in the notes so that the Dr. can make the correct decisions for your treatment.
I hear you about the co-pays. I have to pay a lot each time I go see my Endo and the ultrasound was super expensive. I pay a lot for medical insurance, which makes it even worst. One would think that one would not have to pay co-pays when paying so much for the medical insurance.
Caro
Thank you Kimberly and dgregory for you messages.
I’m in my 30s but I guess I could be having hot flashes due to other than thyroid hormones
I will mention it to my Endo. I has such a hard time sleeping last night. I go to sleep and wake up feeling hot and then I can’t go back to sleep. It is very frustrating. I so wish it was winter already. I figured it was thyroid related b/c they went away for a while while on Methimazole but now they are back … Frustrated ….
Thank you again. I’ll mention it to my Endo.
Caro
Hello. Just saying “hello” for I don’t think I can be of any help with your labs. What can I say, your Free T4 doesn’t look bad and neither does your Total T3, so what is going on with the TSH, right? Why does it say “hypo”? Maybe the pituitary is still trying to get used to the changes??? I’m sorry I can’t be of any help
As for the headaches, my aunt is on Synthroid and she gets headaches when she doesn’t take it (when she is hypo).
Hope pretty soon you get more concrete answers and start seeing better results.
Just dropping by to say “hello” ….
Caro
