[karenz516]

#1179283

Hi bigad, my story is similar to yours but I had let it go (not knowing of course) and my family dragged me to the docs because I had lost 30 lbs. and slept all the time (after working all day). Long story short, was referred to an endo (who is awesome) my heart rate was 180 bpm and I was in a-fib and he admitted me to the hospital. I was diagnosed with Graves Disease. They spent a week trying to get my heart rate down and on 12/14/12 I was given RAI, my endo did not want to start me on ADTs prior to the RAI b/c my liver enzymes were slightly elevated (most probably due to statins for cholesterol), he told me my dose of RAI was not a high dose but he kept me in the hospital because of the thyroid dump, when I was released my heart rate fluctuated through February but never went over 130 bpm. In April, I went hypo and started low dose 75 mg of Synthroid, am still not feeling 100% but I am way better than I was when I was hyper, no more tremors, heart rate is usually between 50-70, less insomnia, but still not optimal. Have good and bad days. Put about 12 lbs. back on (not happy about that). I am careful with my diet, no caffeine, no chocolate. Good luck to you on your journey and feel free to ask any questions. Karen

[Stymie]

#1179284

Butter999

I’m so sorry for your loss, and thank you for sharing yours and your wife’s story. In helping us here, you are memorializing your wife and allowing us to learn your experience. Thank you.

My story: I was so hot all the time. I thought I was in early menopause. When to gyne, and he suggested to test my thyroid levels as well as my hormone levels. Turns out I was hyper. Made an appt to see an endo. Mind you he was recommended by a distant family member who is a nurse, so I made an appt.

Went in to see him, he told me hyper could be caused by thyroiditis, Graves’ disease, and hashimotos. I asked if he was going to test me for all those and he said yes. Also wanted me to get the uptake scan done. I said ok and he sent me on my way for bloodwork.

Did the uptake and the nurse called to let me know “yep you’re hyperthyroid alright”

No mention of Graves’ disease or what that meant for my health.

Did the RAI IN September. Went hypo in November an started on 88mcg of levothyroxine. Never felt good on this generic drug and requested my labs from my endo to start keeping a file on my journey. I received my paperwork by fax and was absolutely dumbfounded when I saw the diagnosis of Graves’ disease. I made all my decisions for treatment based on the fact that I was just hyperthyroid. I called the endo and he wouldn’t even speak to me. The nurse told me that he did tell me I had graves, that by telling me I was hyper it was the same as if she told me I had graves.

It took me some time to come to terms with this on my own, find a new endo from new recommendations and find this site. It literally has been a godsend and I’m thankful I stumbled across it.

Thank you to everyone here for sharing your stories. It makes me feel so much less alone..
Diane

[Smitty]

#1179285

Well 25 years ago i was young and wild boy driving home from a party! BAM biggest baddest panic attack i could ever imagine!!! I went to ER and they told me you will be ok just panic attack it happens. I had no energy and couldnt even move muscles hurt and felt like i ran 100 miles in the wind lol. Well decided to drive home thinking no big deal had two more on way home what the heck is going on layed in bed with waves of fear and anxiety running through my body over and over a non stop panic attack! Went to doctor agian everything is fine they would say just go to see a theripist. Well they didnt help and went to several other doctors and no help. Went to book store got a book dont panic and said look into blood sugar or thyroidism i called doc he acted like he didnt want to but did. Got the call next day with his soft voice well we found out you are overactive!!!So after seeing several doctors i found it myself wow got a RAI done
because of all the panic and anxiety and heart palpations couldnt drive.Took few months and was as normal as i could have hoped for.NOW i recently lost several pounds working out had lots of pvc and guess what i lost weight too fast so back in Panic land well working on it to get back in normal range again wow this feeling sucks but reminds me how bad it can be god bless everyone of you and i will always help or talk to anyone about the horrible experiance of this !!!

[Kimberly]

#1179286

Naisly wrote:

And wonder why GDATF doesn’t talk about it – cancer. This is why I tried to start a post here:

http://www.gdatf.org/forum/topic/43388/

Sadly the topic was pushed away.

No idea what you mean by “pushed away”. The thread is still open and active.

Research articles from established, credible, peer-reviewed journals can always be posted here. However, I do always caution patients to consider whether any particular study on RAI is *specific* to Graves’ patients — or whether the study was done on thyroid cancer patients, who receive a significantly larger dose.

[fiction514]

#1179287

hi everyone, i just joined today and this is my 1st post. my son was diagnosed with graves disease and hyperthyroidism when he was just 2 years old. hes 3 years old now and everytime we go to his endocrinologist they are always amazed by him. he is the youngest child they’ve ever seen with graves disease and hyperthyroidism and its very tough on our family but we take each day 1 day at a time. he gets blood draws once every few months and recently his condition has been changing from hyperthyroidism to hypothyroidism and we have no idea why. he is on methimazole and his doctors keep having to change his doses. they think thats why he keeps changing from hyperthyroidism to hypothyroidism. hypothyroidism runs in my family. also, he seems to have a really difficult time when hes in cold water. he gets cold very easily/shakes and shivers/turns purple quickly too. does that have to do with the thyroid? thanks! lisa

[Kimberly]

#1179288

@fiction514 – Hello and welcome – I’m so sorry that your little one is going through all of this. I would definitely discuss these symptoms with your son’s doctor to get an expert opinion. Cold can be associated with hypo, and tremors (as opposed to shivering from cold) can be associated with hypER. The skin discoloration is not one of the classic symptoms, and should definitely be reported.

Since Graves’ is rare in kids, we don’t have a ton of parents who post here, but this link from a previous thread has some additional resources for parents that will hopefully be of interest:

(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).

http://gdatf.org/forum/topic/43342/

Wishing you and your family all the best!

[elizross]

#1179289

First, thank you all for your honesty, humor and positive attitude. I feel that I have a hundred friends whom I will never meet.

I’m somewhat of a newbie (RAI in 2008) but seem to have had it all. Short-term memory loss is my biggest frustration at this point because I’ve gotten used to the myxedema affecting my eyes and legs. I’ve been told that neither will ever go away because the pretibial myxedema has caused lymphedema in my legs and I have to go on a pump every night. My kids don’t really understand what I have been through, and I have 5 male business partners who think I’m just getting old. I worry because I need to stay very mentally sharp in my field and I’m not. I’ve never heard of anyone being able to go on disability for Graves (although I heard it once qualified).

Every so often I find one to add to the list. Does anyone else have tinnitus? I have had a constant ringing in my ears, like a field of crickets, since I flipped from hyper to hypo. Everything I eat goes straight through me. The problem with memory and focus bother me the most.

You are all in my prayers and thoughts. And I thank you for your support.

[Kimberly]

#1179290

Hello – I’ve known a couple of success stories from patients who filed successful disability claims; one had severe eye issues and the other had a second autoimmune disease.

Getting a claim through for Graves’ disease can be very challenging, as it’s difficult to *quantify* the symptoms. If you are currently working, that will result in an automatic denial. It’s helpful to have an experienced disability attorney on your side to guide you through this process.

I just ran across an article on Pretibial Myxedema that might be of interest. You might need to log in to see the article on this site, but registration is free:

(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).

http://www.medscape.com/viewarticle/804893?nlid=31503_1049&src=wnl_edit_dail&uac=157760MZ

Take care!

[Naisly]

#1179291

Kimberly wrote:

Naisly wrote:

And wonder why GDATF doesn’t talk about it – cancer. This is why I tried to start a post here:

http://www.gdatf.org/forum/topic/43388/

Sadly the topic was pushed away.

No idea what you mean by “pushed away”. The thread is still open and active.

Research articles from established, credible, peer-reviewed journals can always be posted here. However, I do always caution patients to consider whether any particular study on RAI is *specific* to Graves’ patients — or whether the study was done on thyroid cancer patients, who receive a significantly larger dose.

Couple points:
“pushed away” was me saying what I really felt in a nice way
Second, you know I always post established, credible, peer-reviewed journals. (which I mentioned in my post) You also know that I am smart enough to the difference between thyroid cancer and Graves. What I don’t understand is why you always mention this and don’t even make note of what my post was about.
So either you write this to discourage other posters or you know I am right and can find nothing else negative with it.

[Kimberly]

#1179292

Naisly wrote:

So either you write this to discourage other posters or you know I am right and can find nothing else negative with it.

I wrote it because I find it really unfortunate that this forum was there for you when you needed help the most…and yet you continue to make disparaging (and unfounded) remarks about the GDATF.

If someone has *constructive* feedback about how the GDATF operates or how this forum is run, they can always contact info (at) gdatf (dot) org or call 877-643-3123. ALL comments are taken seriously. But the catty posts don’t accomplish anything except contribute negativity to what *should* be a friendly, supportive place.

[Naisly]

#1179293

Quote:

I wrote it because I find it really unfortunate that this forum was there for you when you needed help the most

I don’t get how you think this forum was there for me. It never has. I only come here to help those poor souls who are mislead since everything is sugar coated.

Let me get this correct. You write – “Research articles from established, credible, peer-reviewed journals can always be posted here…” Because you find it unfortunate that this forum was here for me and I continue to make unfounded remarks – This is why you wrote it?

Quote:

…and yet you continue to make disparaging (and unfounded) remarks about the GDATF.

I really don’t understand what your getting at with this statement. Continue? What remarks have I said that were unfounded? So your saying that when I said, “I wonder why GDATF doesn’t talk about it – cancer” this is a belittling remark, how so? I ACTUALLY do want to know. You make it sound as if I am always making these comments which in fact, I don’t. And a fact this is the only time I have brought this up.

So lets reevaluate what was said:

I said – I wonder why it is not talked about (question)

And you got out of it was:
Disparaging
unfounded
catty
negative

I still have yet to receive an apology from the last time. If anyone is being disparaging, unfounded, catty and negative, that would be you. So, it makes me wonder why you don’t like me.

[Kimberly]

#1179294

Rather than hijacking this great thread, let’s both agree to keep the discussion constructive and factual going forward.

Should you have specific complaints about me, about previous facilitators, about the forum’s guidelines, or about how the GDATF operates, I would encourage you to send them to info (at) gdatf (dot) org or fax them to 877-643-3123.

[elizross]

#1179295

I’ve been out of touch for a while with personal issues but sad to see that this chat seemed to have abruptly stopped. I learn so much from reading other people’s stories and find it so supportive to know that I’m not alone and there are people who understand.

When most people hear that I have Graves Disease they admit they’ve never heard of it or say they know someone else who had it but don’t know anything about it.

I am still intrigued by the debate as to whether or not Graves stops after treatment. My daughter is a doctor and insists that since my RIA, my Graves was cured and I am just hypo now. Since my “cure” I have developed pretibial and ocular myxedema and now lymphedema. My levels seem “in range” but why do I have episodes that take me back to some of my initial symptoms?

My Gyn first caught my T4 abnormality but I was originally “diagnosed” by a family medicine physician who said he couldn’t get me an appointment with an endo but was following her advice in my treatment until he could get me an appointment. He arranged for my RAI but I was too naive and trusting to do my own homework. When I finally did she the Endo, she said she never recommended the RAI and would have tried other treatments first. I fired my family doctor and decided to surround myself with physicians who had a history of working together. My Endo referred me to her own personal physician and they spent quite a bit of time together reviewing my medical history before agreeing on a prudent course of action. My Endo actually told me that I was one of her heroes and the second worst case she had in a long career. God bless that woman.

I mention this mostly to those who may be starting their treatment. Physicans’ ability to practice real medicine has been hampered by Washington and the insurance industry. That’s why we have to be our own strongest advocate and fight for proper care. Insist on having your questions answered. Do your research. Don’t be afraid to ask why and insist that your doctor treat YOU not your DISEASE. We’re all different. Don’t just look at the labs, doc – ask us how we FEEL. I know what my normal blood pressure history is. 120/80 is great for most people but way high for me. Is 5 minutes a visit enough to care for a patient? I don’t think so. As I said, my daughter is a physician and I understand both sides. But I won’t ever stop insisting that I’m more than a label on a chart.

God bless you all and thank you for your openness and honesty. I would love to know if anyone is going to the October seminar in Baltimore. It’s nice to put a face with a name.

[barbra]

#1179296

Naisly,

If this forum was not here for you when you needed it what are you still doing here?
I guess I am one of those “poor misled souls” who soaks up the sugar coated information. But I resent being thought of as an uneducated, ignorant hack.
I know a lot about cancer, my husband died from it in November, and I don’t participate in this forum to have my choices questioned.

People on this forum are not unaware of the risks they are taking and, yes, I had RAI. We all do the very best we can. I’m sure the word cancer is in the back of all of our minds but in today’s world most everything one eats, drinks, breaths or touches could be some form of disease causing agent. So, unless one wants to do without any of it, we just have to give it our best shot.

This forum has been a great help to me and many others, I’m sure, and I am grateful for the moral support and all the info from the “poor misled souls” who went through this before me.

Elizross,

I have Tinnitus, but I have to say that I have had it for a year before my diagnosis. It came on one day after a nasty migraine and stayed. Most of the time It just blends in but there are times when it’s disruptive and highly annoying. I haven’t really found anything that helps.

Hugs to all.
Barbra.

[Kimberly]

#1179297

elizross wrote:

I am still intrigued by the debate as to whether or not Graves stops after treatment. My daughter is a doctor and insists that since my RIA, my Graves was cured and I am just hypo now.

Hello – I’m a fellow patient, not a doc, but I think it’s really more accurate to say that one’s *hyperthyroidism* is cured following RAI or thyroidectomy. Thyroid Eye Disease or Pretibial Myxedema can still occur at any point, and in fact, there is an elevated risk of eye complications following RAI. In addition, the latest medical guidance on pregnancy recommends antibody testing for all women with a past or present history of Graves’ at the 20-24 week mark. Due to the risk of passing antibodies on to the fetus, the involvement of a maternal-fetal specialist recommended if antibodies are extremely elevated. To me, this indicates that the root cause is still there even after the hyperthyroidism has been addressed.

Update: I’ll be in Baltimore!

[Author]

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