[pjcooke]

#1060623

Hi I am new to this site but have have been diagnoised with graves disease for at least two years. February I ended back in the er because out of no where all my symptoms came back tremors heart palpations etc.. They adjusted my dosage of my pill (levo- something)…but now I feel like I’m going crazy if I’m not crying I’m numb getting mad about nothing having thoughts and seeing myself ripping peoples heads off. I get so scared that I don’t even want to be around people, then I have one of those thoughts and knowing I would never actually cause harm to someone I feel guilty about having the thought that I go into panics. Is this graves rage? I know nothing about what I am going thru. I also saw that I should not drink beer caffeine…PLEASE HELP ME so I can relax

[Kimberly]

#1183694

Hello and welcome – I’m sorry that you are going through this, but am glad that you found us. Is your primary care doc currently managing your levels? If so, it would be helpful to get back in to see an endocrinologist, just to get an expert opinion. Be sure to let him/her know about all of the symptoms you are experiencing, both physical and emotional. You can find doctors by city/state/zip in the “Looking for a Doctor?” thread in the announcements section at the top of the forum.

Since you are on levothyroxine, I assume that you were treated with RAI or surgery. Hyperthyroidism from Graves’ can sometimes recur after RAI if a patient was not given a “fully ablative” dose to completely destroy the thyroid and also after a “subtotal” or “partial” thyroidectomy.

Sometimes the issue is as simple as tweaking your current dose of meds, but you definitely want to have an expert look at this. Having thyroid levels out of balance can definitely cause the symptoms you describe, but sometimes there is another underlying condition that can benefit from treatment. This is a great video from the GDATF’s 2012 conference in San Diego that looks at the emotional aspects of Graves’:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

https://www.youtube.com/watch?v=CB8_5rbCso8

Please be sure to let your current provider know about your symptoms…and please check back to let us know how you are doing!

[snelsen]

#1183695

Hi pj, that is a terrible way to feel. Been there.
I felt that way when I was hyper with undiagnosed, and newly diagnosed, Graves’
Then, I felt that way again when I was on too much Synthroid. Kimberly’s post gives you a beginning way to go.

Can you call whatever doc you see office, ask for order for thyroid labs so you can get them done today? Or tomorrow?

There is a lot that is not clear. You were diagnosed for two years.
The following are what you should know and understand about yourself, and have a clear picture that you can tell someone else.
1. What has happened in those two years?
2. Did you have a partial or total thyroidectomY?
3. Did you have RAI?
4. Were you on methimazole when you were first diagnosed?
5. Did these symptoms change after your dose change, or before?
6. Does the doctor who is managing your Graves’ KNOW ABOUT THIS? Does he/she know your symptoms?
7. Is your doc a primary care on endocrinologist? A 2nd opinion might be in order.
But you want to be seen soon, have the labs, and your doc should definitely know your symptoms…pronto. If this is a possibility or option, I would just show up at your doctor’s office, ask for lab req and go wherever you can have them drawn. I imagine the office personnel can do it. But to have ll this happen, you need to be an established patient, and have a pretty good relationship with the doc, who knows you very well. If the doc does not know you’ll, they will not be able to help you immediately. Or you conceivably end up in the ER again, and that is not optimal for you, and also super expensive. Your history is critical of you to have good care.

As Kimberly said if you had the procedures in #2 or 3, it is possible that not enough of your thyroid gland was radiated or removed.

You might also be hyper because you are taking too much thyroid hormone.
You might be hyper because you had no treatment, and were not taking ATD’s anti thyroid drugs.

I know it is later on Friday, and doubtful you will be seen this later in the day. Not sure what part of the country you live in. And you may be working now.
You should also know your heart rate and blood pressure.
Your feelings are NORMAL for being hyper. When you are treated properly, you will be your regular person again.

If you have Graves, it is for lifetime, as you know, and all of us need to pay attention to ourselves, and have a good and trusting relationship with a doc who understands graves. AND we have to do our part, too.

I sure hope you feel better and get the help you need, soon. Again, you are not crazy, you are hyper most likely.

Please check back over weekend
Shirley, another Graves’ person

[pjcooke]

#1183696

I have calmed down a lot just reading I am not alone. I had the radiation thing. I never took graves disease serious cause I thought I had to take a pill for the rest of my life. I see now its not a joke. I am due to get my levels checked this week. But just seeing I am not the only person going thru this has calmed down my anxiety. I plan on changing my diet and talking to my doctor asap. This is one hell of a disease. Thank you so much

[pjcooke]

#1183697

I have calmed down a lot just reading I am not alone. I had the radiation thing. I never took graves disease serious cause I thought I had to take a pill for the rest of my life. I see now its not a joke. I am due to get my levels checked this week. But just seeing I am not the only person going thru this has calmed down my anxiety. I plan on changing my diet and talking to my doctor asap. This is one hell of a disease. Thank you so much

[snelsen]

#1183698

pj-
you’ve got THAT right! It is one hell of a disease. And much harder to have than something obvious, like a broken bone, or being blind with a seeing eye dog.

Plus, few people understand it at all! I found it very helpful in the past, and every day now, to realize that before I had Graves’ I had no idea about it, or the implications of it to myself or to others, at work at home, on the bus, and everywhere. Not a good feeling to feel out of control and feel crazy. That is the way I felt.
So, I remind myself every day that I used to be one of those people, who had no understanding. And I am in the health care field! Believe me, reading a few pages on endocrinology and they thyroid, provides no compassion or understand of what it is like.

There are people who do feel that diet changes make a difference, or even help. I am not one of them. I don’t think it makes any difference at all regarding Graves’. But it is fine for people who do believe it, and I imagine varied people firmly believe in different diets. The only thing to really respect regarding food and Graves’, is that some foods contain a lot of iodine, and it is good to have them in moderation. Seaweed and kelp have more than most, and it is generally not a routine part of our food regimen. Dairy products and fish also contain it, and it is essential for us to have it.

This is me:
I eat what I want to eat, and follow no special diet at all. Other than I am eating less meat than I grew up eating, and this just sort of evolved. I grew up in the Midwest, and we had a big locker full of meat. The only fish I saw was tuna in a can, and an occasional catfish. Now I live in the Pacific Northwest, have many more choices, and I grow vegetables in every patch of dirt I can find in my yard. I find that carrots, especially, taste a lot better when I grow them at home. Ok, enough about eating!

You are absolutely not alone! You meet a lot of cool people on this forum, and the one time I went to the Graves conference in San Diego a few years back, I got to meet some of them in person! You have a whole new community, and a ton of new friends. Some of them read, and do not respond for a while, and others will write.

Best, from Shirley

[Kathy10705]

#1183699

I am so sorry to read, snelsen (Shirley), about what you have gone through. I guess my questions are, can anyone tell me, can one exhibit these mood symptoms before your labs actually show hyper? Is there any average on how far ahead, as I assume the levels don’t change abruptly? I guess I also wanted to understand, not everyone who is hyper develops Graves’, right? Also what role does menopause play in all this?
Thanks.

[snelsen]

#1183700

Briefly..
to Kathy-good questions with complex answers. And with the usual reminder that we are fellow patients with Graves’ or TED (thyroid eye disease.)

1. the kinda simple question. Graves’ is most usually hypERthyroidism. Not always, but that is the most common. Thyroid gland cranking out too much thyroxin. That is my understanding. But there are some other things it could be. I did not check to see if you have written previously, so do not know your history.

2. Menopause ALWAYS complicates our lives. Graves’ or no Graves’! It just DOES. It does not have an assigned role in Graves’. Graves’ happens to male and female, old and young.

3. Because of #2, your question about mood symptoms is tough to answer. Probably is not a good answer. But briefly, if you (we) are hyper, our heart rate is fast, sometimes our hands have a tremor if you hold them straight out from you shoulders, people are volatile, short tempered, which is especially noticeable when this is not their baseline. the Mayo clinic reference I hope i remember to note at the end of my post is a nice summary. Also, this website has GREAT reading material.

4. No, levels generally do not change abruptly. That is why labs should not be done too frequently from a dose change. Better to wait 8 weeks. It takes a whole for the body to reflect what is really happening with thyroid production.

good night! glad you wrote!

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