[tajkoont]

#1060749

I am fairly new to being diagnosed with GD. When I was diagnosed I was scared to death. My heart rate was 140 and I was shaking and crying. I started out on a high dose of methimazole and a beta blocker. My methimazole has been decreased and under my doctors direction, decreasing the Beta blocker.

I have two questions… The methimazole has caused me to put on 15 pounds. Has anyone been able to control their weight while on this? If my dosage gets decreased, will it help?

Second questions is about my eyes. My eyes are protruding and watering. As of this week, one of them is trying to cross. It is moving without me moving it. It is mostly noticeable by me and my husband. Every day my eyes look different. Some days the protruding/crossing is barely noticeable. Has anyone else experienced this?

The weight and eye issues are really making me depressed. It seems like everything has been shaken and turned upside down. I am tired and do not have the energy I used too. I also have muscle pain that I never had before. I was in decent shape. I tried to exercise the other night and felt like my legs weight 100 pounds each. I work full time and have three children that keep me busy. I am trying to have a positive attitude. I do not know anyone with this disease and came across this site.

Just needing some encouragement/shared experiences. I am on about week 10 after being diagnosed.

Thank you for listening.

[Ellen_B]

#1184485

Hello,
I am going to let other people respond to your question about being able to control your weight while on methimazole. I have not been on the medication but I have talked to many people who have been on it and who have complained about weight gain.

On the eyes have you been to an ophthalmologist? The thyroid problem is treated by an endocrinologist—a thyroid specialist. The eyes are treated by an ophthalmologist. You should make sure that you go to one that is familiar with Graves’ disease.

Weakness of the upper arm and upper leg muscles is a common symptom of Graves’ disease. The problem is waiting the time for the thyroid hormone levels to return to normal allowing the muscles to recover and regain their former strength.

[Kimberly]

#1184486

Hello – I know from personal experience that the weight issues are VERY frustrating. However, your #1 priority right now is to get your thyroid levels back in balance. If it’s been a few weeks since you’ve had labs, it would be worth having this done just to see if the dose needs to be tweaked again. However, I would not recommend arbitrarily lowering the dose because of weight gain.

Weight issues are very individual – many patients struggle with excess weight gain, some struggle with having too much weight loss, and others have no issues at all. Also, keep in mind that if you lost an unhealthy amount of weight before diagnosis, the weight gain is actually a sign that you are getting back on the path to good health.

[Liz1967]

#1184487

I agree with Ellen about seeing an ophthalmologist, sooner rather than later. Weight issues, while annoying, usually become manageable as your thyroid hormone levels reach normal values. The eye disease, however, proceeds on its own course for the most part, with some minor symptoms like lid puffiness or dry eye being somewhat influenced by hormone levels. Protrusion and double vision need to be evaluated by an ophthalmologist, to check for any pressure on your optic nerve as well as obtaining baseline values to monitor progression. There are palliative as well as therapeutic treatments for the eye disease, but some need to be started early in its course. Good luck!

[tajkoont]

#1184488

Thank you both. I did lose a lot of weight before being diagnosed. Since being on the meds I have gained 10 pounds over my normal weight. I’m short, so that is a lot on me. To manage my aches and pains I have been running in my pool. That has helped a lot. It seems like I am starting to slowly lose weight.

I have went to 2 ophthalmologist. Both really didnt know what to do. I have put a call in to a ped strabismus dr that my daughter goes to. I was hoping he could give me a name of someone who could help treat/evaluate my eyes. My eyes are different every day. Not sure what causes them to be worse some days.

The last two days have been good days. I feel mentally charged and in a much better mood. Just last Sunday I was crying for no reason and barely had the energy to get out of bed. It’s really hard to explain these mood swings.

I get new blood work every 6 weeks. I’m pretty sure I’m swinging to hypo. I guess I just need to adjust to the new me. I’m trying to not be so hard on myself with weight/moods. I’m just so busy with work and kids and I think I need more sleep. I’ve thought about going on fmla until this levels out. I’m just afraid it could get worse.
Thanks for the advice!

[Ellen_B]

#1184489

You say your eyes are different every day. I have heard those with Graves’ say that extra stress does affect their eyes. Fatigue—which increases at the end of the day makes the eye symptoms worse. There may be some unknown factors to explain why the eyes are worse sometimes and not at other times. Can other individuals with eye problems let us know their experience?

Hypothyroidism should be avoided. Being hypothyroid (especially for any length of time) can cause eye problems that you already have to become worse.
Handling your work, your kids and symptoms all at once are a real challenge. It is good to know that if need be you can take advantage of fmla.

[snelsen]

#1184490

Hi, your eye symptoms all fit having TED, thyroid eye disease, along with your new Graves. Not fair, I know. I can tell you with years of experience behind me, that most eye docs (ophthalmologists, (not optometrists…and they are not trained as ophthalmologists. ‘

‘BUT my point is that most eye docs who are MD’s, do NOT understand thyroid eye disease, either because of disinterest and/or choice. They don’t get it at all. The doc you need to see is a NEURO-OPHTHALMOLOGIST. Liz mentioned some good temporary measures, I believe, eye drops, many of them. If your eye does not close at night because it is bulging, tape the lids closed. Use sun glasses if the sun bothers you If you have severe TED, there are many steps and possible surgeries to help you. If you have mild or moderate TED, you can probably slug through it with comfort measures.

You need to realize, though how important it is for you find and see a near-ophthalmologist. They can do baseline tests that will help you and the doc evaluate your progress or regression of the disease. When the eye is bulging, the eye MUSCLES are also swollen, it is quite crowded behind the eye, so pressure on the optic nerve is a serious event, and can cause eye changes, blind spots, , and even blindness that is permanent can result if untreated.
Can you find this kid of doc? Sounds like you have done all the right thing with eye docs with poor results finding the right kind. These docs are generally in a larger city and you are more likely to find docs who understand TED if you are near a major medical center. As you can see from my history on my post, I have been there, done all of it! But I have vision, can read, can drive and I do not see double (which made me crazy )

Re weight, it is typical when you are first hyPER, to lose weight. It is equally typical to regain it and sometimes more, while you are getting to the right spot with methimazole. It is tough thing to have, with a job and three kids, not to mention Graves and TED are both very stressful and hard. All will get better. We want it all to happen right now, but it doesn’t. But you WILL be back to your normal self with treatment. True! Really!
shirley

[tajkoont]

#1184491

Thank you both for your thoughts. Had new blood work today. Go back for results on 18th. My eyes are crossing early morning and late evening. I think being tired is what the trigger may be.

I will continue to look for a neuro ophthalmologist. I will most likely have to drive an hour to find one but I definitely don’t want this to get worse. I would say mine is moderate but not severe.

Thank you again.

[Liz1967]

#1184492

If you cant find a neuroophthalmologist, an oculoplastic surgeon will work too. They can do visual field testing as well as order orbital CT scans to check size of muscles. I actually started there, seeing a neuro after deciding on steroid infusions. The oculoplastic surgeon is well versed on Graves as they do the decompressions and lid repairs for Graves, as well as punctal cautery or plugs, which work very well for dryness.

[tajkoont]

#1184493

I got my blood tests back and my TSH is 15 times what is supposed to be. This explains the weight. I am off the methimazole for 1 week then restart at a lower dose (10 mg). I am on day 6 of no meds and am experiencing terrible body aches and mood swings. (My poor husband!)

This is so frustrating. Hoping the yo-yo stops soon. How often do you all get blood work done? He has me going every 6 weeks.

[scanders]

#1184494

Oh, so sorry! That TSH must have you feeling miserable! (I think my mood is much worse when my hormone levels are low. I think hypo is worse for me overall than hyper, but that’s just me.)As Ellen noted, hypothyroid should be avoided during treatment for hyper. I also saw that on a brochure from one of my eye doctors. My eye disease really became active when I became overtly hypo. I ended up with bilateral OD and strabismus surgeries. I primarily have single vision now, except when I’m tired or stressed–then a little double vision might show. My eye care has primarily been from an oculoplastic surgeon.

I am fortunate enough to finally have a trial off of methimazole after being on it for about 2.5 years. I’ve had labs about every 6 weeks most of that time. (10 weeks off now–here’s hoping it continues!)

Initially I lost 30 pounds, and that did come back, as expected. My endo told me that once I was stable, then I could worry about losing weight on purpose, but this weight needed to come back. Having always had to watch my weight, I’ll be honest that this weight business was worrisome. It’s helped tremendously to have a doctor that seems to be in tune with me, although I think I had to train her to some extent to see that “normal range” might not be my “optimal range”. As long as my thyroid hormones are in a happy place, my weight stays fairly stable, and luckily it’s landed in a pretty comfortable place for me.

Hope this helps!

[tajkoont]

#1184495

That is very helpful. I am anxious to talk to the dr today. I am feeling very hyper – woke up STARVING! It is amazing how being off the meds for one week has returned nearly all symptoms. Hoping that the new dose of 10 mg will be enough and I can be on the road to recovery.

Again – I appreciate any and all encouragement. I do not personally know a single person with this ridiculous disease. Therefore, I am feeling very alone in this battle. Sometimes I think that people don’t believe this is real. It is so uncommon and not understood. Looking forward to feeling better soon!

[Kimberly]

#1184496

Hopefully, your doctor is looking at Free T4 and T3 in making dosing decisions. TSH can remain suppressed for a while with Graves’ patients, so if that is the only test done, it’s fairly common for patients to eventually go extremely hypo. If your doc isn’t looking at T3/T4, definitely ask for these tests to be run.

Hopefully, you will start feeling better soon.

[klassey]

#1184497

Greetings,

I know first hand what you are dealing with when it comes to the ever changing eyes. One day is good, next one seems like this is terrible. They feel more swollen in the mornings and the double vision I have upon waking takes about 5 mins to clear. Eye drops are my salvation! Without the over the counter eye drops, my eyes would be bloodshot and itchy and gritty I have been to the nero-opthamologist. He does deal with TED. I’ve started on IV steroids for my moderate TED’s and dealing very well on a day to day basis. I work all day, drive, and everything in between. I do get fatigued much easier, and yes by night time my eyes are the worse. Just can’t seem to see clearly as during the day. My vision is still 20/20 straight on. I am very hopeful that all this will pass and I can be me again. My only salvation is that i’m grateful I can still see and lead a pretty normal life. The clients I work with at my job all have very serious disabilities and mine is very minor compared to their’s. For that i’m grateful. I also have a very supported husband. We all will get through this ! We can beat this!!! Rest when you can, it’s important.

Gail

[snelsen]

#1184498

I totally get where you are right now. That is what is so marvelous about this site. NOT ONE PERSON has a clue about this illness until it happens to us. And that includes all of us, when were were in the “before” crowd A few people who have had relative with Graves’ and TED are usually very sympathetic.

I think the double vision was the worst for me. Yay, strabismus surgery. But I had to wait a long time to get it, so eyes stopped changing every 3 hours! Also (see my history) had an emergency OD orbital decompression.

Doing ok now, but photophobia, itching , burning , tearing continue, and that is what I am stuck with now, plus eyes do not close well, especially my right eye.
But I can read, drive, see. There was a time when I could do none of these things.

[Author]

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