[Ski]

#1064156

Hi Christina,

Remission is possible, and some patients do achieve it ~ just for clarification, though, remission is technically defined as a period of one year or longer during which your thyroid hormone levels remain normal *without any medication*, so that means without any PTU, or methimazole, or thyroid hormone replacement. Typically the numbers I’ve seen are around 40% of patients that can achieve a first remission. If you achieve one and come out of it, the numbers drop by about half for those who are able to attain a second remission, but even a small percentage tells the story of *some* patients who can achieve multiple remissions through ATDs.

One of the more recent developments we’ve heard is that patients who go off their medications while they have low antibody levels seem to have a better chance of achieving that remission, but I’m not sure we’ve had a "full-up" peer-reviewed study on that specific point yet. We’ll find out more at the conference next month.

Remember that any period of remission is great, but is by definition limited ~ some people here are going on several *years* of remission, which is fabulous, and you may get there too! Still, you will need to get your levels checked and watch for symptoms throughout (not so often, but still necessary) ~ definitely do not confuse remission with cure.

There is an argument to be made that keeping your body healthy overall ~ eating the right foods, getting the exercise you need, learning how to manage stress levels ~ may give you a better chance of achieving remission, or give you a longer remission. It’s worth a shot, and of course healthy is always the right thing to aim for anyway! Still, if you do all of that, and yet you come out of remission someday, please don’t view it as a "failure." This is a tough one, autoimmune diseases are not well understood at this point, so we don’t really know for a certain fact exactly what mechanisms go into our body’s reactions or how to short circuit them. Best to do all you can, then see how it goes for you.

Just keep an eye on your symptoms, definitely pay attention if you feel as if you are getting hyper again (I’ll bet that’s an easy one, who wants to go THERE, right?), and we all wish you the best!!

[CMoore124]

#1018346

HI eveyrone

Its been a while since I posted here. Quick packground…Im 37 and was originally diagnosed in 1997 with GD. I had a couple "episodes" of Hyperthyroid but my body managed to go back to normal on its on without meds. In 2005, I started feeling horrible again. I had every symptom possible and was a complete MENTAL mess. I was anxious and afraid of everything. I thought I was going to die daily and was in the ER all the time. I went on Tapazol in 8/2006 and was very allergic. I had hives for 10 days. My uptake scan at that time was 90%. I switched to PTU and did great. After a year or so I was stable and normal. It took awhile to get back to feeling ok. I still struggle with anxiety and health related issues (Im always afraid something is still wrong with me) My TSH levels have always been low though – in normal but low (0.6-1.2 range)

Well fast forward to now…Im still on PTU – I take 100 mg a day (one 50mg in morning and one at night) I recently went into a new endo to discuss if its ok to be on PTU this long. He informed me of new warnings about the meds and since I cant switch to Tapazol, suggested seeing if I am in remission. He did labs and said if my antibodies are not high – I have a better chance. So, he did the labs and my GD antibody test came back NEGATIVE! Another one (not sure what its called came back higher than its supposed to be but when I was sick it was 400+ and now its 28.) I was thrilled. He told me to lower my PTU to one tablet a day (50mg) for 6 weeks and retest.

I have been taking one pill now for 3 weeks. I am SO nervous about it all. I feel anxious and have had some heart palps. But I have always had heart issues (had extensive tests done for PVC’s and Ive always been worried about it and obsessed about it since having GD) I just dont want to go back to that horrible dark place i was in before. It affected my marriage (its good now) my children (I really feel that they are different kids because of it now) and my sanity. So I am just really worried it wont work but so excited that it might!

I guess I just am wondering if anyone else tried this route. I have always appreciated the support and messages here. Thanks for reading and sharing your story!

Christina

[Harpy]

#1064157

Christina
Agree with everything Ski said
Going on your dates you have been on treatment for 5 years or so and your history sounds like my partner as well, we believe she had undiagnosed episodes that corrected themselves over the last 20 years and the last one in 2007 when she was finally diagnosed she was totally frantic, and the Endo commented she’d never seen levels so high.
She’s been on PTU for 3.5yrs now, and the last 6 months has also made major changes to a low alergenic diet and stress management techniques, like yoga & meditation, and she feels great, her T3 & T4 levels are perfect and TSH has just started showing signs of movement, she was on 250mg/ day for the last 12 months & dropped down to 150mg/day in march and we expect to reduce this again at the next Endo appointment in October.
So I am interested to know exactly which Antibodies you just had checked and what the levels were, as I understand it there are three types common in thyroid conditions, Thyroid peroxidase antibodies (TPOab), Thyroglobin antibodies(TGab) and the Thyrosine Hormone Receptor antibodies(TSH-Rab, aka TRab, TSI), it is the third one which seems to be the one which is the main culprit. It attaches to TSH sites on the thyroid and stimulates them just like TSH causing excessive hormone production, there has been some research which has shown that there are TSH receptors in other parts of our body as well including, muscles, bone matrix, brain, kidneys & pituitary, so it appears that TSH does a lot more than regulate T3 & T4.
It would be logical to assume if the antibodies attack the receptors in the thyroid they will also do the same in the rest of the body, including in the pituitary where TSH is produced, this is the reason that even though T3 & T4 levels are right, the TSH remains low, because the antibodies in the pituitary tell it not to make any TSH, so if your TSH is still low then this may be an indicator of ongoing antibody activity. and may also help explain why so many people experience the short term remissions +/- 12 months, after they stop meds, they are ok for a while, but gradually the AB’s multiply and they start again.
It appears that ATD’s also have an immunosuppressive effect on the antibodies as well as reducing hormone levels, so an extended weaning period before stopping meds altogether seems to give a greater chance of remission. Even when you stop meds altogether, get routine checks done for hormone levels and Antibodies if you can, first after 3 months and then every 6 months for the first couple of years to pick up any changes, the antibodies can flare up significantly before you feel any symptoms and this may help you avoid the worst of it if you were to relapse.
I know that James who pops up here occasionally is currently 7 years clear of meds, he went in and out of remission a couple of times, each remission lasting longer and each relapse being shorter and he viewed that as positive progress.
Maybe send him PM and ask him about his story.
I don’t know anyone else here in remission after ATD’s because I think after they get better, they just get on with their lives and forget the internet, and good on them, but unfortunately it does load these type of forums with those that are suffering GD currently and the die hards who are a treasure, they are better, but remain comitted to helping others, and I tip my hat to them.
Please keep us in the loop on your progress, remain positive, take good care of your body.

[cynthia]

#1064158

question why would you not get "final" not really !!! treatment RAI or surgery??? don’t let fear stop ya….good luck

[Kimberly]

#1064159

Cynthia – Treatment choice is a very personal decision. Since each option has both pros and cons, this is a decision that requires patients to do their own research and make their own decision.

I have personally chosen to use Anti-Thyroid Drugs. I made this choice with the knowledge that these drugs in rare cases can cause white blood cell or liver issues. I have labs run every 3 months or so to check for side effects and to make sure my thyroid levels are in the “normal” range. I’ve been through multiple dosage adjustments over the last 3 years.

As for why someone wouldn’t select a “permanent” solution, I can’t speak for anyone else, only for myself.

As with any surgery, thyroidectomy comes with a risk of complications, particularly damage to the nerves around the vocal cords and parathyroid glands. These risks can be minimized with a highly experienced surgeon, but you can’t completely *eliminate* the risk.

With RAI, there have been concerns that this treatment option can exacerbate eye problems in some patients. There has been some controversy about this, and I noticed that this is one of the topics being addressed at this year’s conference in San Diego. It will be interesting to hear the presenter’s take on this issue.

Finally, it does take some trial and error to find the right doseage that will stabilize thyroid hormone levels following surgery or RAI. If you read some of the stories on this board, this can be a really difficult process for some patients.

So the bottom line is that each of the treatment options is effective in controlling hypERthyroidism…but each also comes with some level of risk. Ultimately, we all have to do our own research, consult with our doctors, and then pick the solution that we believe is right for us.

[mamabear]

#1064160

I am being sent for cat scan in a little while due to something un-Thyroid related… Dont have much time. saw this and wanted to post.

I AM in remission for just over 3 years now. Went on PTU, got pregnant, went off during pregnancy, had baby, got pregnant again (still no meds), had a bad bad virus, went back on PTU, went off was fine, got pregnant again, still no PTU, had flu thought i would need PTU but didn’t.

I am in remission and only wait for when I come out of it, might not be for 30 years, might not ever happen or it might happen tomorrow. I am not cured.. just in remission. I dont let it run my life either.

Being a graves’ patient when I am upset my heart tends to palpitate a bit more, I have more anxiety. I know it is from Graves, regardless of me being in remission or not, its just what graves has done. I dont let that run my life either.

Your dr. knows you best, you know your body! Go for it! But please relax because if you dont you will think it is coming back when it might not be.

Your kids will be fine, they are very resilient, we adults dont believe that but they are. Typical of their ages I am sure they are fine!

Your dr. will monitor you and KUDOS to him for seeing if you can go into remission!!!!

[Kimberly]

#1064161

@ mamabear – Wow, you have had one heck of a year. ” title=”Sad” /> All the best to you…hope that everything goes well!

[CMoore124]

#1064162

Mamabear – thank you so much for sharing your story! I am excited to hear that things are looking so good for you!!

I had my labs run this past weekend and after 3 weeks on only one pill a day – all labs are still in normal range and have not lowered at all. So Im going to continue on with the one pill a few more weeks and then try none!!

I recently have had 2 friends have issues (one thyroid and one just anxiety issues and panic attacks) and I have been able to help them and be there for them. I guess going through all this has helped me help others. Im glad it was for something….lol

Thanks again to everyone

Christina

[mamabear]

#1064163

Kim – it sure has been a roller coaster for me! I’m ready for a vacation!

Christina – you’re welcome. Please make sure that you and your dr. know about you going off of the meds completely. I am sure that is what you meant in your post but I’m just claifying it to make sure.
Usually they wait for 4 weeks to check levels again to give time for med change to take effect. Please make sure they check your labs again with this new dose and maybe even another month after that before taking you off the meds completely. I know it’s hard but it’s worth it.

Also simple hand washing and having kids and dh wash hands every single time they come into the house will help with keeping down the germs. ALL of my kids wash hands as soon as they walk in and YES I DO remind them all. I have ds15,ds7,dd6, and a dd4 and I remind them all because I know they wont if i dont. It helps a lot and I use to be afraid that I would get sick as well , use to get tested 6 weeks after a virus because a virus’ use to be my trigger but now I don’t anymore because I have been ok for a while. At this point in my life if something triggers my graves I’m fine with it, I live my life and when it happens again i’ll deal with it. Took time to feel this way about it though so you’ll get there.

Good luck with this and please please please keep us posted. I would love to hear the events that unfold for you as you go through this. Everyone is so different so hearing a time line when trying for remission from different people is so interesting to me.

[snelsen]

#1064164

Hi Christina, I was looking through your first post. Want to make a comment which might be helpful to you relating to PVC’s.
They are very common in people. Most everyone can have an occasional run of PVC’s. Were you told something a lot different that what I just wrote? From my experience working in a hospital, and listening to a lot of hearts, what I have learned is they are not something to worry about. A large percentages of the population has "benign PVCs" at one time or another.
However, if a person has significant cardiac disease, or a prior heart attack, they are certainly part of a good cardiac workup if they are seen on EKG strip. Perhaps what I am writing is a good springboard for you to consult with your doctor who has done the workup for PVC’s. A person may have a run of PVC’s sometime, then wear an EKG moniter for days and days, and not one will be seen. I am writing this because I think you might be very reassured by the doc if you had a discussion about PVC’s, and maybe you can take them off things to worry about. Please feel free to respond, for I am not sure if I am accurately interpreting your thoughts.
Just wondering. when this whole Graves’ thing began, had you decided to choose ATD’s? I am assuming so. As you have read on the other posts, we all chose different options, for our own personal reasons and/or beliefs. So what you chose is the right thing for you. Having said that, as you gather more information in the months ahead, you always have the opportunity to take at RAI or surgery. It usually turns out that people are happy with their choices. I chose surgery, could not imagine the other two choices for me, and others have felt the same way about my choice.
YOu are doing a great job with your process. I would like to agree with mamabear, kids are flexible, resiliant, they love you, and they will be fine.
I hope everything goes smoothly for you, again, mamabear’s advice, plus all the other good emails, to get your labs, moniter your symptoms, keep your doctor informed, and really check about any new meds you decide to add.
shirley

[kelly]

#1064165

hi, i’m new to this forum, and wasn’t sure how to post a question without replying…so, i popped on to ask if anyone has any more knowledge than three endo’s i’ve seen, one integrative med doc, and one ob/gyn? on the subject of birth defects with ptus? anyone know if the amount your taking affects the liklihood of congenital birth defects? there is very little controlled research out there..not planning on becoming pregnant, but not able to use anything but condoms, worried about accidents..
i’m on 5 mg of methamizole been trying to get graves in remission for 2 years..i’m 34 (ideally should be making a baby this year..but have to wait..) mom died of lupus when she was 47 (very frustrated with western world, but been taking these meds..so bummed! anyone anything??
light and love, kelly

[Kimberly]

#1064166

Hello and welcome to the boards. I’m so sorry to hear about your mom passing at such a young age.

Birth defects with Methimazole are *rare*, but PTU is still considered the preferred drug during the first trimester of pregnancy. I would check with your doctor on whether it would make sense for you to switch from Methimazole to PTU on the off chance that you *do* become pregnant.

By the way, you are smart to postpone conception until your thyroid levels have been stabilized, as being hypER or hypO while pregnant is not healthy for the fetus.

Best of luck to you!

[kelly]

#1064167

hi, kimberly,
thank you for replying. (my mother was a saint and i miss her all the time, but i want to show her i can be healthy!!!)

do you have any experience or book or reference that could tell me more about fertility and post natal outcomes for a graves disease candidate??
i know i have autoimmune disease in my family, which could have triggered it, but my thyroid was fine my whole life ( i had it checked for 8 years straight after loosing my mom),,but as a result of severe depression, a pyschiatrist put me on lithium (three years) and then boom! i was diagnosed with graves disease (two years ago)..went off lithium immediately! and now i’ve been battling thyroid issues…i think it’s more adrenal based b/c of a life of PTSD…anyway,
if ANYONE..HAS ANY ADVICE ON THE PREGNANCY THING.. please point me to a book, doctor, something…b/c my mother and my aunt have suffered so much from autoimmune issues after their two births.it’s scary! i’ve been trying to live my own life and want to create my own experience, is it possible??? i’ve been so healthy in my life…seriously healthy…i’m confused about how this happpened..i do realize, that no matter how healthy i am, i do let stress in like a sponge lets in water…
exercise and nature just aren’t enough…i must remind myself of the "power of the maximum mind" right??
thank you to anyone that understands, kelly (in hawaii, and still having trouble finding my inner calm)

[snelsen]

#1064168

Hi Kelly, I presume you have read all the posts on this thread. There is a lot of good information in them.
Of course you should certain mention your family history. That is important. But from that point, it is probably more productive for you to focus on YOU, and your physical health. YOu have spoken to three endos and one ob/gyn person.
They are probably a better resource for you,(than getting a book about a very complex subject and trying to reach your own conclusions) augmented by the emails of the facilitators in this thread, to have your questions about meds/pregnancy pretty well clarified.
As Kimberly mentioned, it is optimal, definitely preferred, to get to a euthyroid stead state. before getting pregnant.
YOur endo, whomever you choose, can work with your ob gyn on managing your pregnancy. Again, the studies really are quite clear about ATD’s and pregnancy, and what Kimberly stated in her last post reflects those studies and the experience of others on this board.
Maybe it would be helpful for you to write down your own map/plan step by step.
1. Work with endo on getting to euthyroid state before getting pregnant.
2. Line up your docs, decide on them, tell them of your plans.
3. Proceed to try to conceive when you are ready, coordinating with the docs.

Don’t know if this helpful for you or not. Regarding your aunt and your mother, write down what you know, for that is part of a history and physical for the docs. But their experiences, whatever they were, do not have to be yours.
Welcome to the board, it is great.
Shirley

[kelly]

#1064169

hey shirley,
thank you!! i haven’t read all, cuz i just found you guys, but i’ve been obsessesed with reading as many as i can…and then poppn back on to get replies, which is not like me..i get addicted, which is why i stay away from computer so much. but i’ve realized lately, that it’s a viable source of info. and since so many with graves disease, need to help themselves with the disease, it’s nice to know we can check in with each other..but i got your point, which is get all the docs lined up and get my attitude adjusted to agree that it is my life.. my genes should be addressed, but they’re not everything.
i have my next appt 12/2 with the endo (she is the second endo to be talking of RA with me on the first appt). i liked her, but she said she thought i had a 20% chance of recovery and i should consider RAI….she also thought i should stay at 10 mg, but when my energy started to change, and i got my own blood work, sure enough i called her to say tsh went from .42 to 1.77 in 3 weeks, can i go down to 5 mg and she said, yes. if im able to maintain at 5mg, and improve so rapidly, why would i even consider RAI?? (i might have to find another Endo and the so far the only one’s that don’t push RAI…are private pay, no insurance types that charge 500/50 mn)…right now i’m on "charity care""
i’m in hawaii..so, i’m closing the computer and might not check back till i’m home in (oakland)– i’m not looking forward to going home- thank you to anyone and so far,thank you kimberly and shirly)

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