[rushed]

#1058723

HI, I am 36, diagnosed with Graves about 1 month ago had symptoms for about 3 months. Mainly weight loss, muscle wasting, diarrhea, insomnia and had to stop coffee. Also my liver enzymes got elevated and I had severe itching which has been worked up and is thought to be due to the Graves. For the itching I was put on cholestyramine, which may also be controlling my thyroid levels to some extent. Anyway, the endocrinologist is not willing to prescribe ATDS because of my elevated liver enzymes, although those have not been rechecked for a month. I don’t want surgery, so I scheduled a RAI ablation. But meanwhile my symptoms are a lot better and my free t4 is now in the normal range, T3 is a lot lower but not normal, TSH still undetectable. I did have the thyroid stimulating antibodies. I guess I would like to know if waiting is a terrible idea. It is actually a good time to get the ablation over with before I start my new job as it will be hard to take time off for the first year…but I feel rushed. Also feel like my endocrinologist is somewhat patronizing and just gives me reassuring platitudes urging me to get RAI. He says it will wax and wane and I should just get treated now. I have 2 young kids and would rather get RAI when they are older because being away from them now is hard and also to have them be older when they possibly get radiation exposure. I feel like if I get it now I will always wonder. Is there any data on people just getting spontaneously better? Anyone else just wait it out? Is there a way to find a good doctor who listens? I tried calling other clinics but it seems like it is a 6 month wait at most places so that is not very helpful.

[Kimberly]

#1169547

Hello – In a small number of cases, Graves’ can go into remission on its own; however, going without treatment is a huge risk that can bring serious – even life-threatening – consequences. Remaining in a hyperthyroid state can cause complications such as bone/muscle wasting, heart problems, and thyroid storm, which has a 20-50% fatality rate.

Elevated liver enzymes can be associated with hyperthyroidism – which is why doctors generally run a baseline test prior to prescribing Anti-Thyroid Drugs. Usually, the thought process is that if the levels haven’t gotten *worse* over time, the effect is due to the hyperthyroidism, and not the ATDs.

However, there *are* reported cases of liver damage with Methimazole, and significantly more cases with PTU. Severe cases are quite rare – an average of less than one per year since the FDA started tracking “adverse events” with drugs – but this is still an issue to be aware of.

All three treatment options (RAI, thyroid surgery, Anti-Thyroid Drugs) have risks and benefits, so you definitely want to do your research and make a decision that you are comfortable with. Could your General Practitioner help you cut through the red tape and get you a quicker appointment for a second opinion?

[rushed]

#1169548

Thank you Kimberly for your response.
So after some non-stop soul searching, my husband finally asked me- how will you feel in a month if you take the ATD? And I realized I will not feel good. I will be stressed, worried about side effects on my liver, having to monitor closely for infection, wondering if it will work, getting my dosage adjusted. I realize RAI is not for everyone, but I realize it is for me. I need something done and get on with my life. I know it will be some time until I know what dose of thyroid medicine to take. I know it will be hard to be away from my kids. I also feel like sometimes it is okay to trust a doctor. Thanks

[Denise321]

#1169549

I had RAI when my daughter was 4 months old. It was difficult, but I had to try to make myself well. I couldn’t hold her for about 3 days after my treatment. It did help for awhile. But, the symptoms of Grave’s Disease don’t go away after you get treated. But, leaving it untreated is much more dangerous, and would be a risk to your life. Not holding the kids for a few days is a better option than not being around to see them grow up. The longer you stay hyper, the more damage is done. This can cause many dangerous effects on your heart, and mental wellness. The days will be hard, but they will go by fairly quickly. Best of luck!

[rushed]

#1169550

So I got the RAI about 16 days ago, I am feeling pretty much "normal". My throat area has been sore since about 3 days in, which I take as a good sign in that my thyroid is getting damaged. I am going to get TSH and FT4 every 4 weeks for the next 3 months to monitor. I feel like I might be a little more hyper than before but I have read that might be normal if thyroid hormone that was stored is released as the cells die. Just more hungry and awake again but my pulse seems ok. I’ve been doing some mild exercise to try and get some muscle mass back and that felt good although I get very sore very easily so I try to take it slow. Being away from my kids was incredibly hard but they actually seemed to do fine, my husband is awesome and managed very well. I realized that kids are resilient and they need me in the long run to be as healthy as I can be, so it helps to think that way. Easy to say now that I am through that part of it. I don’t think doctors comprehend the emotional impact of being away from your kids AT ALL…it is a serious side effect and they act like it is no big deal.

Anyway, I was wondering is it a good idea to get an eye check up even if you are not having eye symptoms? I have terrible eyes at baseline (very very nearsighted) so I am paranoid that I won’t notice if something is changing. What did people notice first if they got eye problems?

[gatorgirly]

#1169551

My first symptoms appeared about six months after RAI. It started out as what my regular ophthalmologist originally (and incorrectly) diagnosed as allergies or some sort of sinus infection – red, itchy, watery eyes with a lot of swelling of the skin around my eyes and the eyelids, but no protrusion. It really did look just like my best friend’s eyes when she had some crazy allergic reaction a few months ago. But about a week after my symptoms first appeared, my actual eyeballs began to swell and were no longer shaped like eyeballs – I know, hard to explain. The outer corners of both eyeballs were swelling out my eye sockets and that’s when we knew something was seriously wrong and I got in to see a neuro-ophthalmologist right away and we nipped it all in the bud with a high dose of prednisone – which I’m still on – and I’m symptom-free.

What I didn’t notice, however, was any change in my actual vision. Of course, because of the swelling and weird eye shape, I couldn’t wear my contacts, but I could see just fine with my glasses. Both the ophthalmologist and now neuro-ophthalmologist have checked my visual field several times in the past year because of the Graves, and fortunately there is no damage to my optic nerve and my prescription hasn’t even changed. Can you get an appointment to see a neuro-ophthalmologist? That way, if you do start developing symptoms, he or she will be familiar with your medical history and likely be willing to see you immediately should any issues arise. And of course, if you do get a new patient appointment, I’m sure they will run the gamut of tests to see where you’re at to make sure there are no TED symptoms but also to have something to compare to if you do start having any symptoms.

Did your endocrinologist put you on prednisone or other steroid before/during/after RAI? Many will as a precaution, as I’ve seen from this board. Mine did, but that didn’t seem to make a difference when the RAI finally took effect six months later.

What Kimberly mentioned is that not becoming severely hypO or hypER MAY reduce the likelihood of developing TED. I would request earlier bloodwork if you start feeling hypO before your next scheduled bloodwork. I know I started feeling hypo the exact same week all my severe TED symptoms began.

[Kimberly]

#1169552

Great advice from gatorgirly to get in *sooner* than your next scheduled appointment if you start to feel hypO symptoms coming on. Every patient is different, but common symptoms can include fatigue, joint pain, weight gain, constipation, dry skin, cold intolerance, and slow pulse.

That’s good that your doc is testing T4 as well as TSH…TSH can remain suppressed for quite some time after treatment, so T4 is a better benchmark for deciding when to initiate treatment with replacement hormone.

Wishing you all the best!

[Ski]

#1169553

Hi rushed,

I’ve been away from the BB for a while, so I only just caught up with your story — you’ve done a great job so far of navigating your circumstances, and being very realistic about all the different elements you’re dealing with. I hope you’re starting to feel much better. It’s always a slow process, no matter which treatment choice we make, but being on the road, having begun, is so important, physically and emotionally.

I wanted to weigh in on your TED questions — the way TED presents typically has no relationship with your actual vision, such as your nearsightedness. It occurs differently for everyone, but can involve symptoms such as bulging eyes, double vision, difficulty/pain trying to rotate the eyes into different positions, redness, swelling in the tissues around the eyes, feelings of pressure behind the eyes, and retracting eyelids (meaning, you look at if your eyes are open wide when they’re relaxed). The symptoms can be isolated to just one eye, or they can be in both eyes, but presenting differently in each eye. You would be likely to notice, but sometimes things happen very slowly, so seeing an ophthalmologist now can be useful for a few reasons. First, they can examine your eyes and tell you if they see anything odd. Second, they can tell you what to look for that should trigger a return visit. Third, you will have built a relationship and the doctor will know what your eyes looked like "before," which can go a long way toward correcting things in the event you DO end up with big changes due to TED in the future.

TED doesn’t always present at the same time as Graves’ thyroid disease, so it’s good to know what to look for in any event. Remember, please, that patients with the very worst symptoms of TED are in the minority (very small minority), though patients with some level of changes that can be related to TED are pretty common, so you should know that identifying any changes does not imply that you will be faced with the very worst issues. If you look up TED images online, they can be very frightening, and you should know that it’s not by any means certain that you’ll be dealing with that type of situation. The best thing to know is that IF you have to deal with the severe symptoms of TED at some point, there are really good treatments and corrective surgeries available that can return your appearance and vision to near-perfect after all is said and done. The time in between is tough, absolutely, but the final result will be okay.

TED is an autoimmune disease just like Graves’ Disease is an autoimmune disease (research continues to discover whether they are one and the same autoimmune disease — at present it appears they are related, but not the exact same disease). That means you have antibodies in your body that do harm, instead of performing a protective service, like the rest of the "normal" antibodies. With TED, the antibodies attack either the fat or muscle tissue behind the eyes, and causes them to swell and stiffen. Your immune system is stimulated when you react to stressful situations, so learning to stay calm throughout tough times can help to minimize TED symptoms, if you get them. (But if you find your symptoms continuing to escalate in the face of your Zen-ism, please do not blame yourself — sometimes it just happens. The last thing we need is a reason to kick ourselves!)

I do hope this helps!! I hope you’re feeling much better now too.

[rushed]

#1169554

Thanks for the supportive replies.
To review, I had RAI on Aug 18th, so it has now been 6 weeks I think. I had lab work 2 weeks ago and TSH was still undectable and free t4 actually went up a tiny bit. So I am telling myself it is ok, but now I am waking up too early and getting too hot again. I guess I know that it is too soon to tell but I had high hopes that it would be trending down. The radiologist gave me a pep talk before I took the rai about everyone he has treated needing thyroid replacement by week 6 so I kind of got that stuck in my head…thinking that is how it would go. And I lost another 3 pounds. It is weird to be skinny, all my clothes are baggy and I don’t feel like myself-probably because I am not sleeping enough. But I just don’t need to sleep as much it feels like. Anyway, I have been doing yoga and stretching and trying not to overdo it and get some muscles back. I am also applying for new health insurance cause I started a new job and filling out lots of forms about what medical treatments I have had…and feeling like I am going to get denied so that has been bumming me out too. But at least I can hug my kids again and just keep telling myself to be patient, which I can be 90% of the time. Anyone know if it okay there is no improvement yet?

[Kimberly]

#1169555

Hello – A recent article on RAI in the New England Journal of Medicine noted that RAI can take anywhere from 6-18 weeks before the patient becomes euthyroid or hyperthyroid.

Group health plans are often more lenient on accepting people with pre-existing conditions — although some plans will not pay for treatment for the first 6-12 months. Hopefully, you will get good news!

[miltomal]

#1169556

Rushed~
Just wanted to let you know that it took over 3 months before my labs started to retreat downward. Be patient with this, it does get better and you will be happy that you were patient. It is great that you have taken up yoga and are stretching, clearing your mind and breathing, keep it up! this has saved me! Remember the rest and sleep also help the body to heal.

Milton

[rushed]

#1169557

Just thought I would update- my second round of labs shows that my free t4 is down to 0.9 and my TSH is above "undetectable" for the first time in a long time at 0.09. I have a followup with endocrine in a week or so. I feel okay physically, no longer losing weight. Started sleeping better and dreaming a lot more…maybe catching up? I think I got approved for health insurance- no rejection letter from this new company yet- and I also went to the eye doctor who did not see any thyroid eye disease.
So anyway, I guess the nickname I chose for myself was apt, I am "in a rush" and very impatient to get better but it looks like it (the RAI) is probably going to work…I am so glad I went this route- for now. I will post if I change my mind. Can’t argue with no more crazy hyperthyroid symptoms. Of course, I know I will be complaining about hypo symptoms in all likelihood if they happen to start up. Looking back I really am amazed at how stressed out I was about making the decision. I really believe this illness made me over think everything way more than if I had some other condition, which is something I could not see when I was in the middle of it. Now I feel more like myself again, and it is relief. I hope others can find some solace in that if they are stuck in the decision making process.

[miltomal]

#1169558

Rushed,
It is great to hear of your progress. Still be patient with the titration period, you are a few weeks behind me, and your non-symptoms of sleeping better and not losing weight will continue to get better. i have been able to sleep through the night for the first time since, wow, i have no idea when i was able to sleep thru the night before. And the dreams!! Yes, they seem to come back a little strongly. Not sure if that is a med induced thing or not, are you on any thyroid hormones yet? And for your information, i do not feel the hypo symptoms are as extreme as the hyper.

Good luck, keep doing what you are doing! and still be patient with the next step, you will be happy you are!
Milton

[rushed]

#1169559

Another update- I think it is 3 months almost exactly since RAI. Not on replacement yet. My endocrinologist told me to wait an extra 2 weeks (had been every 4 weeks, switched to every 6 weeks) to check my labs for unclear reasons, especially because I told him I have been really cold all the time and wondered if I could just go ahead and start replacement (the answer was no, must wait til TSH is above normal) . He is not very good at communicating and clearly constantly overbooked – time pressured. I am just going to go back to my family doctor for monitoring but am without insurance this month so do it next month. I feel a lot better than being hyper. I am sleeping more- on the weekends a few times I have fallen asleep at 7 or 8pm and been out like a log. It is reminding me of the fatigue of pregnancy (I have had 2 kids). I am drinking a cup of coffee in the AM and a diet soda with caffeine at lunch and a lot of decaf tea to stay warm. Had to buy warmer pajamas because my normal ones were not working, plus extra blankets. I feel my body temperature has lowered. Pulse has gone to 60s- pre Graves was in the 70s usually, During graves was 90-110….

Yoga at night helps me stay awake a little more until a more normal for me bedtime. Then I have vivid, memorable dreams that frequently wake me up from 3-4 am on…also similar to being pregnant. And NO I am not pregnant!! I am asking my husband and family to keep an eye on me because my fear is that I get hypo and not realize it or something, but it seems okay so far, I have energy during the day to do what I need to do and feel my thinking is calmer than this summer.
Weight is not what I was pre graves but my muscles have definitely gotten bigger in my legs just from walking and mild jogging a few times, which is kind of nice to be feeling more like me.

It feels good to write all this down and hope it can help anyone else who is on this journey.

[Kimberly]

#1169560

Hello – Thanks for the update! A couple of comments…

Please talk to your doctor about the latest guidance from the American Thyroid Association and American Association of Clinical Endocrinologists about monitoring post-RAI. TSH is *not* a good benchmark for determining the course of treatment, as it can remain suppressed for quite some time in Graves’ patients. The guidance states: "Since TSH levels may remain suppressed for a month or longer after hyperthyroidism resolves, the levels should be interpreted cautiously and only in concert
with free T4 and T3 estimates." It’s helpful if you can get hard copies of your past labs, so you can see for yourself where your values are.

Please don’t let lack of insurance interfere with the monitoring process. You don’t want to find yourself severely hypO and then have to dig out of that situation. Here’s a web site that includes a search function for clinics that offer free or reduced-cost care, regardless of whether you have insurance. http://www.hrsa.gov/index.html

Best of luck!

[Author]

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