[ohiolady December 2, 2008 at 11:03 pm Post count: 12]

#1075388

Thought I’d say that I have made a decision! It took another trip to the endo to get more answers but for now I am going to try methimazole. My uptake was 34% and he has prescribed 10mg per day. I go back in 3 months. Also just for kicks and giggles I am getting a 2nd opinion from another endo in another city in January. I think his opinion will be the same but hey I would rather double check than regret later. Sometimes I wonder if I should just do the RAI and be done with it but I just can’t commit to that yet. That glimmer of hope that remission may take place or a new treatment waiting to be discovered is too hard for me to not try.
I can say that this disease has consumed my life for the past 6 weeks. I hope to move towards normal levels so the heart & overheating symptoms get fewer and far between. I asked the endo about damaging the heart and he didn’t seemed concerned that would happen. He also said he could give me beta blockers but the side effects might not make them worth it. For the time being I am going with out the beta blockers but sometimes the pain can be quite uncomfortable. Any suggestions?
Also how long does it normally take before concentration comes back? Some days at work are almost unbearable when I can’t think straight. I know we need to limit our stress but how does one do that? I try deep breaths and moments alone but sometimes those don’t work so well.
Anyways – this board has helped me immensely. I appreciate the advice and thoughts and the general keep your chin up attitude. THANKS!
Tammy

[James December 2, 2008 at 11:49 pm Post count: 115]

#1075389

Tammy,

Not sure if you have been on Methimazole already and have been prescribed 10mg because your levels are coming down after an initial run on a higher dosage of Methimazole. I can’t say I understand how a doctor determines the dosage from the uptake scan. 10mg is fairly moderate though. . . so that is a good thing.

Nevertheless, I was initially placed on a higher dosage of 30mg of Methimazole to get my levels down fast. It may be that MY uptake dictated that dosage as determine by my Doctor. The good news was that I felt MUCH better within about 6 weeks, and even better yet the following two weeks. You will be amazed how much better you feel once your thyroid levels come back to normal. I was better able to handle stress and that sense of well being came back soon thereafter, not to mention much better concentration levels. Just ensure that your Doctor watches that you don’t OVER suppress the thyroid either. Regular blood tests are a must during this stage.

I was placed on beta-blockers BEFORE I went on Methimazole, and slowly weaned off of them once my thyroid levels started normalizing. I can’t say that I saw a whole lot of improvement with the Beta blockers. The real improvement came when the thyroid levels normalized. Insomnia was a big problem with me while hyper. I was barely 30 at of diagnosis and in peak physical conditioning, so if you are in a similar position, that should work in your favor. Living and eating well is a must, especially now! I’ve read testimonials here of how some people experienced muscle damage while hyper and could barely lift so much as a book. This was not my experience (Fortunately). Our experiences with GD are clearly quite personal, it’s not a one size fits all kind of thing and that is what your attending physician must understand as well. You are the one with the disease and you are your best advocate. Seems like you are doing a good job!

Keep us posted on how you are doing.

Best regards,

James

[LynneB54 December 3, 2008 at 11:03 am Post count: 32]

#1075390

Hi Tammy,

I’m sure not a medical expert, but from what I’ve read and heard, I’m a little surprised your doctor didn’t put you on a beta blocker. From what I understand – being hyper can cause damage to your heart. For me – the beta blocker has made the difference between being able to function at all and a downward spiral. Within hours the hand tremors were gone, as were the heart palpitations, and that "twitchy" feeling. What a relief!! In addition, I was having lots of trouble with muscle pain in my thighs and upper arm and while that is only marginally better – at least it’s not getting any worse. I haven’t had any side effects (which of course doesn’t mean that you won’t) but truly – it has been a Godsend. If you’re still having heart problems, you might want to consider asking for a prescription until your thyroid levels are normal.

I’d like to know when concentration will come back too! ” title=”Smile” /> I just feel fuzzy all the time. I’m hopeful that will pass. My stress relief is a hot bath and a good book; that helps a lot. Otherwise – I’m just trying my best to keep doing what I’m doing (work and volunteer stuff) because I’ve come to realize that I’m not going to feel any better doing nothing, either. However – I’m giving up as much nonessential stuff as possible and just doing the best I can with the rest of it. Fortunately, my kids are grown so I don’t have the stress of young children at home, and that helps too. I guess my advice to you is to find the level of work and other stuff that you can manage and say good bye to the rest of it for now. I’m counting on a light at the end of the Graves’ tunnel!! ” title=”Smile” />

Please keep us posted on your experience with Methimazole; I’m still struggling with a treatment decision and would like to know how you’re doing.

Good luck!
Lynne

[Bobbi December 3, 2008 at 1:22 pm Post count: 1324]

#1075391

Skichick posted this question in this thread:

[i:2h7jgdfn] can’t believe how many posts and unique experiences all of you had. Not to mention all of the advise. I am also Type A and feel like I am awful because I can’t do it all. My endo on weds said he overshot the mark with me and increased my PTU this time instead of reducing. I have a question – how long do I fiddle with the meds before it is time to think about RAI or thyroid surgery. I would rather not do the RAI since I want to have a baby and I have heard that you can’t until 1 year after treatment. Is this true? Thanks again. Jillskichick732

Posts: 4
Joined: Fri Nov 14, 2008 6:39 pm [/i:2h7jgdfn]

Hi, Jill:

You probably will have to "fiddle" with the meds relatively constantly as long as you are on them. You have a complete, and diseased, thyroid. The thyroid is being aggravated by antibody action, and antiboy levels can rise or fall for no well-understood reason. So, while you have your thyroid you can expect for there to be fluctuations in your dose of ATD required. Some folks do experience remissions (i.e. low, low antibody levels) for a while, but remissions are, by definition, temporary (although some can be years in length), and recurrance of the disease is pretty much a given.

So, the issue becomes one of whether or not the ATD does a thorough job of keeping you in the "normal" zone.

And, the issue is also one of what type of medication you would prefer to be on while pregnant, and perhaps nursing an infant. If you are a person who would eliminate caffeine, alcohol, cigarettes, etc. while pregnant, you might not feel comfortable being on a drug that is known to pass into the baby. PTU crosses the placental barrier in smaller concentrations than does methimazole, which is why doctors prefer us to be on PTU if we are pregnant and hyperthyroid. That preference does not mean, however, that –given a choice — our doctors would prefer us to be on ATDs as opposed to replacement hormone. You should talk with your own doctor about this issue.

We are asked to wait a year (sometimes less, but let’s say a year) for two reasons. The first is that allows several egg cycles to pass. Our doctors think that the radiation exposure to eggs that are just about to be released is greated than to eggs that are dormant. So, we wait through several menstrual cycles — the typical "low" end recommendation is six months.

Then, we should wait until we are stabilized on replacement hormone, and our bodies have had a chance to heal. This can take a while. My GP at the time I got ill told me that in her experience, it takes a good nine months for someone to go through treatment and stablized hormone levels, before they feel themselves again. On average. For some of us, it took longer. But being healthy when you enter a pregnancy is huge.

I hope these comments help,
Bobbi — NGDF Online FAcilitator

[spenanelson December 5, 2008 at 11:27 am Post count: 33]

#1075392

Jill,

I understand what you are going through. I am 38 and I was diagnosed 4 years ago, had RAI was on levoxyl for 3 years then had my thyroid come back. I have since discovered that you never really get ride of Graves. I found out that I was hyper while I was starting the process for IVF. The same day that I found out one of the main reasons I could not convieve.. I also found out that I was hyper — again.

They put me on PTU but over the next 3 months they kept having to increase my dosage and finally came to the conculsion that I had a very resistant form of Graves. In the end I was taking 600 mg of PTU daily and 25 of atenolol. I have since discovered that I suffered liver damage and tested positve for gastric parietal cell AB (4 times the normal levels) and my possible have pernicious aniema.

So I have faith that I will get pregnant.. sooner than later. I have a great team of doctors who are all working together to get me to that point. You will too!!

My advice is to do what ever you can to keep your stress level down… laugh a lot… cry if you have to… but most of all know that you are not alone. There are a lot of people who have gone through what you are going through and can really be here for you.

Take care.

[skichick732 December 7, 2008 at 8:46 pm Post count: 6]

#1075393

spenanelson and bobbi – thank you so much for your replies and information regarding pregnancy. This board has really been a Godsend. Thanks again. Jill

[kallikat December 8, 2008 at 2:50 pm Post count: 29]

#1075394

"spenanelson":1outcp4y wrote:

[quote:1outcp4y]I am 38 and I was diagnosed 4 years ago, had RAI was on levoxyl for 3 years then had my thyroid come back. I have since discovered that you never really get ride of Graves. I found out that I was hyper while I was starting the process for IVF. The same day that I found out one of the main reasons I could not convieve.. I also found out that I was hyper — again.

They put me on PTU but over the next 3 months they kept having to increase my dosage and finally came to the conculsion that I had a very resistant form of Graves. In the end I was taking 600 mg of PTU daily and 25 of atenolol. I have since discovered that I suffered liver damage and tested positve for gastric parietal cell AB (4 times the normal levels) and my possible have pernicious aniema. [/quote:1outcp4y][/quote:1outcp4y]

My doctor believes my thyroid is stubborn, too. I had RAI in Sept 07, and my TSH level bounced around then stabilized for a while, but now we’re having a tough time regulating the synthroid. Last week my level was .093 (up from .024 last month), so my Dr took me completely off synthroid for two weeks, and then I’m to have more labwork done. She said if it’s not better she is sending me back to my endo for another uptake. Gee! I’m just wondering if I have that "resistant form" of Graves, also. I didn’t realize there were different forms – is there a way to test for it?

[jaidelennon January 3, 2009 at 11:13 am Post count: 3]

#1075395

Mama Bear,

That is some of the best and most encouraging information I have read….your successes in multiple pregnancies/deiveries…all the while suffering from Graves. Thanks for sharing your story!

Jeri

[sarabear0508 January 3, 2009 at 8:53 pm Post count: 66]

#1075396

Jill,

Welcome to the group. I don’t have much time but I just wanted to say; I’m thinking of you and your not alone as you’ve seen. People here care and will listen to your problems. I’m relatively new and I’m flabbergasted at how everyone has great advice, love and acceptance. Just remember on bad days, " Life’s not about learning to survive the storm…but learning to dance in the rain." Thing will get better. Get rest and feel better!

Much love,

[sarabear0508 January 31, 2009 at 8:11 pm Post count: 66]

#1075397

Ohiolady- We havn’t heard from you!

How are you doing? I would love to hear whats going on with your treatment and how you are feeling.

Take Care

[grekson February 1, 2009 at 1:05 pm Post count: 42]

#1075398

Don’t feel guilty Dear.

[anniess November 23, 2009 at 3:05 pm Post count: 2]

#1075399

Would somebody tell me how to ask a question on this site? Here is my question: can my thyroid go overactive again once I have taken the radioactive isotope? I took the isotope in 1993 or 1994 and have been on thyroid replacement hormone successfully since then. But now I require ever-decreasing amount of hormone, and my doctor noticed an increase in the size of my thyroid. (I went from 90mg of Armour Thyroid to 100 mcg Levothyroixine and my TSH is at 0.089. All my doctor wants me to do is be rechecked in six months. Should I see a specialist before then?) I am worried. Thanks for your advice.

[Bobbi November 23, 2009 at 4:54 pm Post count: 1324]

#1075400

"anniess":1nplntv6 wrote:

Would somebody tell me how to ask a question on this site? Here is my question: can my thyroid go overactive again once I have taken the radioactive isotope? I took the isotope in 1993 or 1994 and have been on thyroid replacement hormone successfully since then. But now I require ever-decreasing amount of hormone, and my doctor noticed an increase in the size of my thyroid. (I went from 90mg of Armour Thyroid to 100 mcg Levothyroixine and my TSH is at 0.089. All my doctor wants me to do is be rechecked in six months. Should I see a specialist before then?) I am worried. Thanks for your advice.[/quote:1nplntv6]

[Bobbi November 23, 2009 at 5:00 pm Post count: 1324]

#1075401

Well, I didn’t do such a great job with that Anniess.

Essentially, to post a new question, there is a "New Topic" button at the top of the list of posted questions when you enter the NGDF.org list.

As to whether or not you can go hyperthyroid after successful RAI, yes. If sufficient thyroid cells remain after RAI, then they can be revved up by antibodies, and they can make the dose of replacement hormone you are on too much. And, thyroid cells can die off (that is the natural progression of the antibody attack), so that you might need more replacement hormone than you are used to. That is why we need to be checked at least once a year: most of the time things tend to be stable, but conditions have been known to change.

I hope you are feeling better, soon.

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