[amosmcd]

#1059357

Hi, and thanks for providing this forum for people with Graves Disease.

I was officially diagnosed 6 days ago with Graves. It’s pretty surprising, because up til this spring, I had been treated for Hashimoto’s Thyroiditis, on Levothyroxine and feeling better than I had in decades. I had insisted on being treated even though my labs were normal (aside from the Hashimoto’s antibodies) because I had all the symptoms of being hypo. With a trial, the endo doc said that yes my thyroid had responded like I had needed the Levothyroxine. I felt great for almost a year.

Then this past spring, I started losing weight (although I was trying) and by early summer I was having heart palpitations and rapid heart rate. My endo took me off of all Levothyroxine and I just went back a week ago (after 2 months) to have my labs rechecked. My antibodies for Graves were positive. My TSH was 0.014, Free T3 6.4, and Free T4 1.54. The rapid heart rate and palpitations have gotten a lot worse in the past few weeks. Where earlier this summer I could tolerate a small amount of caffiene or chocolate, I can’t at all now. Decaf Liptons is not very good!

My endo started me on methimizole 10mg, and I actually feel worse and feel like the heart symptoms are worse. I was sick with a sinus infection when I saw him, so didn’t think of a bunch of questions until Monday. I asked about my left upper eyelid being a little swollen and droopy and my vision off and on blurry (he didn’t respond to that question by phone and I forgot, too) and he did say that I might feel worse for a month before I felt better. I’ve still been walking 2 miles every other day on a flat street with no problems. I’m tired. I’ve lost a total of 36 pounds and am too skinny now.

I guess I’m just wondering how I could go from hypo to hyper? My thyroid has been enlarged since my 20’s (I’m a 54 year old woman with 2 sons) and I’ve probably been symptomatic (hypo) for decades before I couldn’t stand it anymore. Did I trigger the Graves by taking Levothroxine? Even though my labs were great during the first year and I felt good? I’ve also developed vitiligo (losing pigment in skin) in the last month, which is also an autoimmune disorder (my grandma had it.) I’m feeling very discouraged, especially when my doc said 90% of patients end up with RAI or a thyroidectomy. I’m afraid I’m getting eye problems from it.

My endo is a pretty clinical-type doc. I’d like to find one with more personality, but right now I don’t have the energy.

Any suggestions or encouragement is very welcome. Sorry for being so whiny my first post!

Amy LC

[Bobbi]

#1174271

Some people have the antibodies for both Hashimoto’s and Graves, which creates huge problems. The antibodies can “take turns,” making it difficult for you to get regulated at normal levels of hormone.

Taking levothyroxine can make you hyperthyroid (a technical term for too much thyroid hormone), but it cannot, to my knowledge, trigger Graves.

It is not at all unusual for us to have “some” signs of the eye disease. But having some signs does not mean that we will go on to full-blown awful eye disease. If you are concerned, getting evaluated by an opthamologist can be helpful. Our endos do crude eye examinations (asking us to follow a pencil or finger moving around the perimeter of our vision), but they do not treat the eye disease.

[LaurelM]

#1174272

Hi Amy,

Sorry to see that you are struggling but I’m glad you have found this board. It has been tremendous source of comfort to me. This is my second bout after a 6 year remission. I see that you are unsure about your endo. I am also in the Puget Sound area but over on the Eastside. I have used the same endo for my past initial occurance and this current recurrance and have been very happy. I don’t know if he is taking any new patients but if by chance you would like a second opinion let me know and I’ll send you his info.

I hope you are feeling better soon!

Laurel

[amosmcd]

#1174273

Hi, Bobbi–Thanks for the info. What are the “huge problems” that having antibodies for Hashimoto’s and Graves can cause, other than the swings back and forth from hypo to hyper? My endo did say having both is not common, although he’s seen it before.

I’m due for a vision exam, so I’ll make an appt with an ophthamologist who treats Graves eye problems, just to make sure I’m covering all my bases.

Thanks for your help!

Amy

[amosmcd]

#1174274

Hi, Laurel–

Nice to know someone who lives in the area! Thanks for your reply. I would love to get a second opinion and welcome you sending me the name of your endo. Not sure if my insurance will cover all Eastside docs, but worth a check! My doc is good clinically, but doesn’t really discuss things without me always asking questions, and I don’t always know what questions to ask! I certainly would not jump into RAI or thyroidectomy, if it comes to that, without talking to an endo who could spend time with me and explain things without a lot of prompting.

I’m sorry you’re back dealing with Graves after so long being well. Is your endo trying something new this time?

Thanks for your support!

Amy

[Ski]

#1174275

re “huge problems” having Hashimoto’s and Graves’ Disease: the fact is that we are not healthy until we have reached a normal thyroid hormone level and stabilized there for some period of time (which is a different period of time for everybody, depending on various factors). If we never truly stabilize, we are in a constant state of ill health, and the body never gets a chance to recover. I think that’s probably what Bobbi was referring to.

[amosmcd]

#1174276

Thanks for the clarification, Ski. I’m a bit terrified at having been diagnosed with Graves so was worried there was a dark unknown out there. I’m going to just start taking it a day at a time until I’m farther into the treatment process and I see what my body does.

Amy

[LillyL]

#1174277

i Amy, I am so sorry to hear you are having such a hard time. I don’t think I can be much help to you except to let you know that you definitely are not alone!
The people on here are so kind. I hope someone can help with with some good information for you.
I am the opposite exactly of what is happening to you? Strange really, isn’t it? I have been diagnosed with Graves and have been treated with 15 mg Tapazole but I Graves disease was very resistance at accepting it until recently and now today my Labs came back showing I am Hypothyroid so I see my Endo on Friday unless he calls tomorrow? I hope you start feeling better all that I can recommended to you is that you take care of yourself and really rest when you are tired and let your family know what is going on because you will defiantly need to rest that is for sure.
Good luck getting this all straightened out on feeling better soon!
Kind regards, LillyL

[amosmcd]

#1174278

Thanks, Lilly!

I’m trying to stay positive while my body figures out what it’s going to do. I’m sure some of my anxiety comes from just being hyper.

I’m sorry you’ve swung back to being hypo. That’s no fun, either! I hope you are able to get a balance in your hormones so you’re feeling better. From what I’ve read, this up and down stuff is pretty common with Graves. Which really sucks!

Take care,
Amy

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