[Momof5]

#1059800

Went to the doctor a few weeks ago because I couldn’t recover from the sickness I had gotten in February. Fatigue, muscle weakness, lots of trips to the bathroom, losing weight, etc. I had googled symptoms and had read about hyperthyroidism and thought maybe it was the viral kind. To my surprise, the uptake revealed Graves and scared the poop out of me (sorry).

My levels were/are pretty high, and they started me on Atenolol and Methimazole pretty quickly. I started on 20 mg does of Methimazole – doc said I could take it all at once, but I’ve read so many confusing things about taking it at least twice a day, that I take 10 in the morning and 10 at night. 50 mg of Atenolol. It’s been 11 days now, and I still don’t feel any different. Bad shakes is the worst when trying to keep up with five little ones. I know the anxiety and fear is amped up because of the diagnosis and just feeling wonky, but I can’t stop crying. Every time I try to talk to my friends or my husband, I end up a big old mess. When I first started researching, I kept reading don’t do RAI, you can go into remission, etc and by the time I got to the endo, I was adamant I wanted to do the pills.

Then, I found another board, and somehow ended here, and I see that most people end up going to TT or RAI. RAI scares me to death…I’m so so so afraid of the eye issues…I have lid retraction on one of my eyes, and I can’t decide if it’s dry eye because of the lid retraction or worse. My vision doesn’t seem to change, but sometimes I think I make a mountain out of a molehill. Other times, I think it’s because I’ve been crying so much that my eye is, well, not irritated, but bothersome. Could it be just the swelling of my lid that makes it feel weird?

So, then I started thinking TT is the way to go and do I just do it and get it over with so I can start feeling better rather than dragging things out for months and months. I’ve talked to some friends who have said they’ve done RAI and had no problems, and also a friend who did RAI and ended up with eye problems (and smoked) and it still scares me to death.

I’m in Chicago and it seems like I am one of the lucky ones – my primary caught it quick and got me in to an endo within a week. They answered all my questions, and have been great. I requested an antibody lab as that wasn’t done (confirmed by uptake scan only). In fact, I made another appointment with her for Wednesday because I really need to understand all the treatment options better and what my real chances are of remission.

I still don’t get this as they say it’s most likely caused by stress. Ironically, this past year as been a great, relaxing time for me. The most stressful time of my life was carrying spontaneous triplets – so I can’t quite grasp that straw. My kids are all finally in full day school and i finally had time to focus on ME this year – working out, taking care of myself, relaxing, etc. I don’t know…just doesn’t sit right with me. And how does a family of hypo’s end up with a hyper? My mom is passed away so I don’t have the benefit of asking her questions, but I have been grilling my aunt. *shrug* the questions will drive me batty.

I’m scared for my kids to get this (of course, I read of young kids getting it, teenagers, etc and I think that’s adding to my anxiety).

I guess I’m just rambling to put myself out there. I’m scared, and don’t know what to do.

Carrie
Mom to the Fab Five

[Kimberly]

#1177685

Hello and welcome! I’m sorry to hear about your diagnosis, but am glad that you found us. You will find that different online forums seem to have different slants on the three treatment options. On this forum, we encourage people to look at the risks and benefits of ALL three treatment options, consult with their doctors, and then make the decision that is right for them. The “treatment options” thread in the announcements section of the forum has a couple of great links that go through the pros and cons of each option.

Methimazole starts working right away to block production of *new* thyroid hormone, but you might continue to have symptoms until your body burns off its existing stores of excess thyroid hormone, which can typically take a few weeks. Since you are at the 11 day mark, it will likely be a little longer before you see some relief. Once levels are stable, you should also start to see some relief from the emotional issues as well.

The current theory is that certain individuals are genetically predisposed to getting an autoimmune disease — and then some “trigger” actually activates the disease. Stress is believed to be one trigger, but there are other potential ones such as a viral illness or something in the environment…and there are likely triggers that researchers don’t even know about at this point.

Since you are having some eye issues, it would be good to schedule an appointment with an experienced ophthalmologist to get an expert opinion. Although the eye disease can occur at any time, regardless of treatment option, patients who choose RAI do have a higher risk of further eye complications. A course of steroids prior to treatment is believe to help reduce this risk – but steroid therapy comes with its own set of risks and benefits.

You mentioned the shakes – are you currently a coffee drinker? I found that when I was hyper, I had to give up my morning coffee, as it make the tremors much worse…so bad, that I know all my co-workers at the time could see it!

Take care – and please keep us posted on how you are doing!

[Momof5]

#1177686

I have never drank coffee, and gave up all sodas and juices a few years ago. I have only been drinking milk (chocolate for a treat!) For the past year or so. Now, I have cut my milk consumption to one glass a day and just water the rest of the time.

Do you have any information on the risks of our kids developing GD? I don’t want to test them needlessly, but also song want them to go undiagnosed during critical times in their lives. Right now, they are still young (11,9,7,7,7), so I don’t know what to do, hut I am concerned. It seems like they may be predisposed to thyroid issues (especially my daughter), but not necessarily graves or hyperthyroidism. I have a great aunt that supposedly had graves, but my grandmother had low thyroid and I don’t know about my mom (although her sisters seem to think she didn’t have thyroid issues). My one aunt had low thyroid for approx 10 years.

I made an appointment with an ophthalmologist, hopefully to just ease my fears. I am also seeing a naturopath on Saturday in hopes of finding some relief from symptoms.

I also like something you guys say about the success stories, and not finding many because those people go on to live their lives, jot spend time on message boards. That was a break thru “aha” moment for me.

Thank you for the support.

[adenure]

#1177687

Hi,

I just wanted to give you a big cyber hug and tell you that it is going to get better. I was in your shoes a little over a year ago when I was diagnosed with Graves after my 4th son was born. I had all the same fears and anxiety (in part due to the Graves, in part being freaked out about the diagnosis, and also thinking I’d never be well again). I cried a lot. It was hard to be physically unable to care for my children. My heart rate would go up to 120 walking down the hall; I was a mess. I also homeschool my older 3 boys, so teaching them and caring for my baby was near impossible for the 2-3 months that I was hyperthyroid.

I too was fortunate in getting diagnosed quickly. I was on methimazole (5 mg) daily and after 2 weeks, started to feel somewhat better. 7 weeks later I had normal thyroid levels and felt good! Unfortunately methimazole ran up my liver enzymes quite a lot and I had to stop the medicine. I had to choose RAI or surgery, and I opted for surgery (that was 8 months ago). It’s not perfect, but I am much healthier and happier now! I can care for my family, homeschool, and enjoy life. My complaint is that I get tired more easily and just don’t have the strength physically that I used to have, but I deal with it without too much issue. Evenings are hardest. I need to rest more often, but that isn’t a bad thing. You know how it is with little ones, busy, busy!

When you have your thyroid labs checked, ask for the liver panel (labs) as well just to be sure that your liver enzymes are healthy. My doctor didn’t order them initially, but I asked and am glad that I did! I didn’t have any symptoms, but had issues all the same. It is not likely that you’ll have problems, very few people do, but it’s good to check.

My mom and aunt have hypothyroidism and my great grandmother had goiter, so I think the thyroid issues have a genetic component from what I understand- regardless of whether it manifests itself hyper or hypo.

I was really scared after reading all the horror stories on the web. Especially when I had to choose between RAI and surgery after stopping methimazole. I spent many nights crying in front of the computer. But, I want to tell you that I AM a success story! So, we do get healthier and treatments can make us well again. Stay strong. I found that doing something to distract me in the evenings helped. My husband and I would watch “Cake Boss” and for that 30 min. (when I was hyper and also when I was waiting for surgery- I had to wait 6 weeks after I stopped methimazole), I didn’t think of being sick.

[LaurelM]

#1177688

So sorry you have joined the club. The good news is that it will get better. The not quite as good news is that there is no quick fix. My first experience on an ATD (antithyroid drug) is that it took 4-6 weeks to not feel crazy bad. At 3 months, I felt much better. At some point over the year, I felt truely well. You mentioned crying. That is what finally pushed me to the Dr. I thought I had post-partum depression (I was 8 months postpartum) because I was crying ALL the time – in the shower, on my way to work, sitting at my desk, etc. I didn’t feel ‘sad’ per se but I didn’t know what else could possibly cause it. Luckily my doc knew me pretty well and even though she put me though the questionaire for depression, she also checked my heartrate and sent me to the lab. Within a week, I was being seen by an endo.

I went on to have a healthy 2nd pregnancy and a 6 year remission. I am now back on ATDs and most of the time, am doing OK.

The good thing about the ATDs are that you can begin treatment and gain time to really research all of your options. You also need to keep in mind that the hyper state can really hamper our ability to calmly consider our options. With time, you will be able to have some perspective which is really hard right now with such a new diagnosis.

My doc is our whole families primary doc. She made sure to add the autoimmune disease family history to their charts but unless we have a specific concern, there is no need to test them for anything. They are both happy and heathly kids who are doing well in school. Because of the family history (and not just thyroid autoimmune disease) they are at a bit higher risk over their lifetime but it is certainly not a guarentee. My grandmother was the only child out of 5 to have a thyroid issue. None of her 3 children have had a thyroid issue (the youngest is nearly 70). I am the only cousin out of 6 to have an issue. None of the great-grandchildren have had thyroid issues (so far).

Best wishes for feeling better soon. Keep us posted.

Laurel

[Momof5]

#1177689

Thanks. I find it strange that I didn’t find this forum first. I found two others and found a link one of the posts referenced and clicked in it and ended up reading hundreds of pages in here.

It’s a difficult choice….I don’t want to feel miserable for two years, if that’s what happens with the ATD’s (I mean if they can’t stabilize my levels). I want to enjoy my time with my kids while they are still young (did I just say that?! )

I don’t think I would handle the RAI well. Type A personality and waiting and wondering don’t go too well.

I am sad to read so many horror stories and misdiagnosis as that, well, just breaks my heart that people can’t get good
treatment.

I don’t have a goiter and the uptake said it was slightly lopsided with one side being a little bigger than the other. I have never smoked, so I guess those are to my benefit.

[Gabe]

#1177690

Welcome! I’m fairly new to GD but not to the forum. The forum is a tremendous help and I check in almost every day. The crying thing…lord…it’s a tough one, especially at work in front of my employees! Thank goodness they are all understanding.
I’m not patient for the roller coaster of treatment and have scheduled a pre-surgical consult for June. Dont want to do RAI because of eye involvement and other reasons. Who knows meds might work before then. But for the last 3 months I’m not feeling much different except that the beta blockers have blocked the physical symptoms (sweating, heart rate), however if I miss a dose my blood pressure shoots up and heart races.
The challenge is to find ways to manage the disease instead of IT managing you. Easy to say.
I’ve learned that every person has to find their own path and treatment that works for them. This forum helps you ask the right questions and exchange fears and tears and smiles with people who know what you’re going thru.
Best wishes,
Karen

[Kimberly]

#1177691

Hello – It’s really the exception rather than the rule for a patient to go through a lengthy rollercoaster period on ATDs, although it certainly can happen. One critical issue is to make sure that any dosage adjustments should be based on Free T4 (some docs also test T3) and *not* TSH. TSH can remain suppressed for quite some time in Graves’ patients and is not a good benchmark for making dosing decisions early in the process.

This is definitely not an easy decision, as all three options have pros and cons.

Take care!

[Momof5]

#1177692

I feel pretty lucky that my docs seem to be doing the right things. Although, they didn’t test antibodies before starting meds. I requested that they do, but the lab messed up the order and I had to go back yesterday for more blood. The diagnosed me based on the uptake and scan alone. There’s a teeny part of me that is holding out hope that they’ve misdiagnosed and i won’t have any antibodies (wishful thinking, I know).

They did a full cbc and liver panel when my pcp originally tested for thyroid. I’m not sure they did it yesterday, but she did say she would do it at the 4 week mark.

Today – I feel a bit different, although I can’t tell you why. I still woke up with bad shakes and heart going crazy.

Thanks for the words of encouragement!! It is greatly appreciated.

[Momof5]

#1177693

I also worry about going into remission and then worrying that it will come back. What a crazy, vicious circle.

[adenure]

#1177694

I think that’s why a lot of people opt for surgery or RAI. They get tired of going hyperthyroid again (if they achieve remission) or they worry about going hyperthyroid again! I know that would be me: worrying about going hyperthyroid again. The six weeks I was off methimazole waiting for surgery, I was scared I would go hyper and not be a candidate for surgery. I’m glad I don’t have to worry about that anymore.

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