[sheracj]

#1058693

Hello. I was diagnosed with Graves’ this week. It was pretty scary to hear but validating at the same time. I felt like I had been going crazy for the past three months. I weighed 122 at the beginning of the year and now weigh 100. My mother had hypo and my great grandmother had Graves as well. I knew it was my thyroid but never expected the diagnosis. I have experienced every symptom except the bulging eyes. I have had blurry vision, red eyes, and sensitivity with light. The mood swings and lack of focus have been the worst. Luckily my friends and family have not formed into a mob yet.

My question is to those of you here who have been living with Graves after treatment. How has your quality of life been? I was a very active person…scuba diving, horseback riding, working out daily. Now I get winded trying to get on my horse. Have you been able to go back to your active lifestyle? How long did it take for your body to get back to "normal?"

Any advice would be helpful in processing this.

Sincerely,

The Not So Wanting To Be…..New Kid On The Block

[snelsen]

#1169410

Hi, welcome to this site. It is great. I am so happy that you do have a diagnosis, for it is the first step toward your path to health, and wanting to resume your normal life. It is really terrible for a person to remain hyperthyroid and untreated, so your diagnosis is a gift. So, yes, you will be able to do all the activities you used to do, and yes, you will feel like you again, and not crazy and moody. But it takes a while.

I don’t have a lot of time right now, but wanted you to have a fast response to your post. In a brief summary, your will probably be taking an ATD (anti thyroid drug) and maybe a beta blocker if you have a fast heart rate. Then you will probably feel much, much better. Next, you almost always have a treatment of continuing on ATD’s, having RAI (irradiating your thyroid) or surgery, to remove most or all of your thyroid. In the first instance, you have labs, see how you feel, and continue on ATD’s. There IS a possibility of becoming hyper again, then you do need to consider the other two choices or have the ATD dose adjusted. With RAI and surgery, you end up taking thyroid, the amount depends on how you are feeling, and the labs. That is a BRIEF overview. For much more detail, put some of these words in the search box. And, look on the front webpage of this site for the article discussing the guidelines for treating and managing hyperthyroidism. I think, too, you will get a LOT of reassurance, affirmation and support by putting the words "hyper, hyperthyroidism" and related words in the search engine of this bulletin board. Sometimes there is a compelling reason to have the surgery only, but is rare, and usually co-existing with other conditions. Almost always, it is a personal choice. All of us on this board have chosen one of these options for varying reasons.

Regardless of your choice of managing you thyroid, this condition will always stay with us. And, referring to the rest of your life, you will go back to being you again, with all the activities you have been doing, and you will not feel like a crazy person. Do read the article,
**It is best to be followed by an endocrinologist who is familiar with Graves’. It is a long time relationship. It is possible, once you get to a steady state, primary care docs can follow you, but best for an endo at the beginning of this journey non of us want to take.
You have some eye symptoms, so it is my thought that you should have an initial baseline appointment with a neuro-opthalmologist. You might just have small symptoms as you have stated, but sometimes TED (thyroid eye disease) can get pretty severe.
All for now,
Shirley

[Kimberly]

#1169411

Hello – Every patient’s experience is a little different. It’s important to be patient with ourselves and give the body the time it needs to go through the healing process. It took me about 10 weeks to get to the point where I could do a 3-mile walk. Now I’m fairly active 4 years after diagnosis (working out, traveling, etc.), although I can’t play a 2 out of 3 set singles tennis match anymore…I just don’t have the stamina.

However, we have a volunteer who was diagnosed last year and biked 3,200 miles in 50 days this summer to raise awareness for Graves’ disease and other thyroid disorders!

Please check back and let us know how you are doing!

[sheracj]

#1169412

Thanks ladies for the response. It actually took me a while to read the responses. I still was having difficulty processing the news. I literally found out 6 days before turning 35. It is also the same age my mother was when she was diagnosed with hypo. I remember well her struggle with weight. She went from a size 8 to a size 14. Hers was halfway removed and when that didn’t work, radiation to kill it.

This week I dropped below 100 and my hair has been falling out. I had energy for my party, the day before my birthday. However, the next morning I had five panic attacks followed by depression. I struggled to eat all day and couldnt even enjoy red velvet birthday cake. I knew I needed to but just couldn’t force it down my throat. My friends have been supportive but they really don’t understand just how big of a struggle it is to eat. Most times my appetite doesn’t come around until I take panic medicine. I stress over everything and cry about the dumbest things.

I go to the doctor to on Friday to discuss treatment options. It feels like it’s a month from now. Has anyone else felt like they are bi-polar before you started treatment? I never know what to expect mood wise. I cried spending my Labor Day packing up tons of clothes that don’t fit me anymore. I got new stuff donated by friends but it still sucks going from a size 6 to a size 0. I know most women would kill for that kind of weight loss but not me. I miss my curves and I miss "the girls." Being single definitely doesn’t help because I worry that if my hair falls out and I get to thin that no man would want to date a toothpick. I know it may seem stupid to think that but it’s how I feel.

Any advise from single women living with Graves? How do you deal with a social life and early treatment? How do you deal with explaining to your friends that I may know I need to eat but I can’t control my appetite?

As always, any / all advice is greatly appreciated!
Sylinda

[Kimberly]

#1169413

Hello – Hopefully, you will get some good responses. Every patient’s journey is different. I’ve actually had the opposite problem of having to pack up clothes that no longer fit because of weight *gain*. That’s no fun, either. ” title=”Sad” /> I sure wish I could send you some of my extra pounds, but I guess we don’t get to choose what complications we have with Graves’!

The following bulletin from the Foundation has some great info on the mental/emotional impact of Graves’ disease. (Note: you will need to use your browser’s "back" button to return to the boards after viewing…otherwise, you will be logged out when you close out of the article).

http://www.ngdf.org/cms/modules/files/u … 784485.pdf

Hope this is helpful!

[sheracj]

#1169414

Hi Kimberly,

The bulletin helped me very much. Chart two should have had my name on it and a check mark by all. I don’t know how my great grandmother made it through her disease back then. I am hoping and praying that my symptoms will reduce after treatment. I definitely can relate to the diminished "executive functions." I thought I had hit my head in my sleep.
My memory was terrible to begin with and has gotten worse. I have sticky notes all over my cube at work. It looks like the main character’s house from "Romancing the Stone."

Do you know of any support groups in central Alabama?

Sincerely,
Sylinda

[snelsen]

#1169415

Sylinda,
I am writing to echo Kimberly’s post. You WILL have a normal life again. You will be you again. One of the many things we experience with Graves’, is that we want to feel better NOW!!! I understand 100%. When I was hyper, I lost around 22 lbs, down to 92. When I was hyper, it was hell.
But Sylinda, you will be back to your normal self, complete with the "girls!" Really. You are just beginning the path to getting better. YOu didn’t say, but I am assuming you are on ATD’s (antithyroid drugs) now? And maybe a beta blocker?
To answer the question about feeling better, i recall feeling better about two weeks. That is when I started saving some of my clothes rather than donating them. Plus, I knew I had a PLAN! I think the biggest feeling I had when I got a diagnosis, was vast relief. That I had something with a name, that had treatment choices. The other thing that helped the most was talking to people who had walked this walk, and felt absolutely fine, back to their old self.
YOu will too!
Shirley

[sheracj]

#1169416

Hi Shirley!

Thanks so much for responding. It is good to hear that things will get to normal. I am not on meds yet. I have been diagnosed but the specialist had extra tests run from the ones that the primary doctor took. I go back to the doctor on Friday to find out what type of treatment needs to be done.

This has all been a roller coaster ride for me. I was a military brat and have law enforcement experience so I am used to having a "standard operating procedure" (SOP) for everything. The not know is driving me insane…which lately is one step to the right.

I think the hardest thing for me right now is keeping things together at work. I work in…..well to put it in simple terms…hell. LOL The normal SOP for me was to dig into work so that I can get my mind off any issues I am trying to get through. Of course, as you know, Mr. Graves’ doesn’t allow that to happen. I hope you are not a blond because I am about to make a reference….I feel like a blond in a M&M factory wondering how am I going to separate all the M’s from the W’s. I forget little things that I know needs to be done. It is so darn (southerner coming out) frustrating.

Shutting my head off so I don’t worry is like telling a hunting dog not to track that perfect 18 point deer….it ain’t happening. I think that is the main thing I am trying to work through right now. Graves’ has so many treatment options and possible complications. It is definitely not like taking Tylenol for a simple fever. My health has been for the most part good and to feel so helpless is just….where is the smiley for pulling my hair out.

This site is definitely helping to get my frustrations out. So if I act crazy on this site….I can just say "hey I am among friends and I can plead insanity in a court of law." ” title=”Wink” />

Shirley and Kimberly….how did your friends handle the news?

Sylinda

[Kimberly]

#1169417

Hi Sylinda – We currently don’t have a support group in Alabama; the closest one is just outside Atlanta, GA. However, if you’d like to send an e-mail to info@ngdf.org, we keep a running list of people in different parts of the country who are interested in leading and/or joining a support group. That way, we can let you know if something comes up in your area.

As far as telling others about Graves’, I’m probably not the best example, as I really didn’t tell anyone other than close family…although I did tell a couple of other co-workers and friends that I was dealing with a "thyroid issue". At the time, I just didn’t have the energy to explain to other people what Graves’ disease was!

Now I lead a support group in Arizona and have been very active about talking to others in the community about Graves’ and other thyroid issues…but when I was first diagnosed, I just wasn’t ready to talk to people about it.

On the work issue, the info below from the Job Accommodation Network (JAN) might be helpful. (Note: you will need to click your browser’s "back" button to return to the board after viewing).

http://askjan.org/soar/other/thyroid.html

Hope this helps!
Kimberly

[snelsen]

#1169418

Sylinda, just a quick note. I think you feel a LOT better after you get on the medicine (anti thyroid drug) that you need. Having too much thyroid hormone running around is like trying to be efficient, driving 80mph in 1st gear.
I was really an anxious, pretty irritable and crazy person before and when I was diagnosed. When I had no idea, co-workers would say, "What is wrong with you. YOu didn’t used to be like this," and I would snap back, "Nothing." Bit it was obvious because of my behavior and weight loss, intolerance to heat, and all the rest of it, that was not myself.

So, do what works for you, but I found the diagnosis a huge relief. I told everyone at work that I knew I had not been myself at all, and finally, you had labs drawn that showed you had a thyroid imbalance, or Graves’. I would be surprised of some of these folks know someone in their family or a friend, who had it. As Kimberly said, everything takes energy right now, especially we are not patient with ANYTHING or anybody.
Do keep writing to us. Everyone on this board "gets it."
Shirley in Seattle

[sheracj]

#1169419

Kimberly,

I went to the site. I already have FMLA paperwork to discuss with my doctor. My work is anti-flexible so to cover myself I have the documents ready for signatures. I do get up away from my desk as much as I can. The problem is I am a manager so I am not allowed to be remote often even though I work for an online school. Can we see where stress plays a factor into my 8 hours LOL. I did email and ask for a support group in Alabama. Hopefully there will be more of an interest so I can help. Once I get myself "regulated" I wouldn’t mind trying to do more advocacy for the disease.

Shirley,

I have been letting people know at work. My team has been really great and understanding. The "powers that be say they understand but they are just playing that "political game" hence the FMLA paperwork. My friends in the office and outside the office have been great in supporting me. I have some that go "Mom" on me and force me to eat…which I do need so I don’t need medical attention. My family has been the rock I have needed the most. My great grandmother had Graves and my Mom had issues. So of course there is a history…Not jumping like in the Toyota commercials. I have been able to vent, cry, yell, cuss…sometimes all at once.

Thanks so much ladies for your responses. It has helped me get through a tough day at work.

[sheracj]

#1169420

Today has been an awful day. I went to the doctor to get my results today and apparently I don’t have any issues. The doctor gave me the results and there are areas where my levels are high. He just looked at me and said you have no issues. He even felt my thyroid and stated "yep, it’s still swollen." I basically cried all the way to work. My friends immediately told me to get a second opinion as the symptoms have been going on for 3 months now. I just scheduled my second opinion appointment and faxed my labs.

Has anyone ever had this happen? Are there any meds or other extenuating circumstances that can make the labs to be inaccurate?

[katiepecbv]

#1169421

Hi, I was diagnosed today with Hyperthyroidism. I’ve looked into it a little and am a little confused. Is Grave’s Disease the same thing as Hyperthyroidism. My doctor said he is gonna start me on some medication. Will that fix it or is this something I’ll have the rest of my life? Or is this possibly a life-threatening disease. I go back to the doctor to find out more in two weeks, but I don’t know if I can wait that long.

[snelsen]

#1169422

My gosh!! what a disappointment. You don’t want this doc anyway, if he tells you you do not have issues(symptoms)
. so glad you jumped on this right away. Are you seeing endos?
Of course we are not medical professionals, but as you probably notices from this site, people frequently send their labs. do you have your own copy? I suggest you begin to keep a file for yourself. lso, always sign a Medical Release of Information form, always available at the front desk, have the labs and the dictated visits of what the doctor wrote and said about you.

Of course you have symptoms, and an enlarged thyroid. I hope you find a doc ASAP. Which can be difficult.
the labs matter, but the PERSON and their symptoms Re equally important. would the original doctor take care of you?
Keep a record of how you feel, do take your pulse , write to say what it is, your BP too, you can get one at the drug store.
Are you in the military now? sometimes you have to push hard to see an endocrinologist who understands Graves’ but they all shoul and do know the basic, and so should a primary do. Or an internal medicine doc.
It is hard to write on the iPad, I will find a computer with a keyboard later today
Shirley

[Kimberly]

#1169423

@Sylinda – As Shirley said, we aren’t doctors here, but it certainly is a puzzle why your levels would show up as high, while your doc says you have “no issues”, especially in light of the symptoms that you described! It sounds like a second opinion would be a good idea; a couple of good referral sites are http://www.aace.com and http://www.thyroid.org.

@katiepecpv – Graves’ Disease is the most common cause of hyperthyroidism (overactive thyroid gland), but is not the only cause. Other potential causes include thyroiditis – which can be viral or autoimmune in nature – or overactive thyroid nodules. Is your doctor running additional tests to help determine the cause of your hyperthyroidism? Once you determine a cause, this will help you narrow down your treatment options. If you *are* dealing with Graves’, it’s something you will need to be aware of for life, but the condition is very rarely life-threatening if you are receiving proper treatment.

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