[tsnreb525]

in reply to: Suspecting Graves in Teenage Girl #1176341

Wow! So many similarities. I feel for you. It does sound like HELL. Your description rings a bell for sure. I am keeping my conversations here to myself (as far as my family is concerned) for now since we are just starting to get tests and make correlations between symptoms and possible causes/triggers. I am very appreciative of the candid feed back I have been getting from everyone. I have learned a lot in a few posts from a real perspective. I really think She has more indications of Graves than Cushings. I hope we’re wrong on either count but we’ll see.
Please take care and TTYL.

Thanks,
Bob

[tsnreb525]

in reply to: Suspecting Graves in Teenage Girl #1176339

jeanierd,
I am sorry to hear about those frustrating years trying to pin point a reason for your daughters health problems. I can surely relate. When YOU KNOW what is happening is not normal and trying to get Doctors and others to listen/understand all while putting your kid through endless tests and procedures is a huge drag on everyone. When your child looks fine to everyone else but is far from it, it makes the situation even worse. My daughter has 60% of Graves symptoms and 40% of Cushings Syndrome.

Thank you for relating your experiences. It does help.

We have 3 more Cortisol saliva tests that have been ordered because the last two came back normal even though they were done done just before the last “rage” episode.

Bob

[tsnreb525]

in reply to: Suspecting Graves in Teenage Girl #1176337

I will give it a try.
Thanks Kimberly.

Bob

[tsnreb525]

in reply to: Suspecting Graves in Teenage Girl #1176335

Sounds like my kid……………we used to know her triggers but since there has been a few years free of the rage episodes until this latest couple we may have to re-learn them if they’re indeed coming back.

Take care. Your insight has been helpful, thank you.

TTYL

Bob

[tsnreb525]

in reply to: Suspecting Graves in Teenage Girl #1176333

vanillasky,
Yes, we are all too familiar with the rage episodes. When she was 8 she punched straight through a sheet rock wall! Eyes as wide and black as a sharks eyes. 2 hours later……….sobbing and physically spent.

I am sorry you have to go through your episodes. It is heart breaking to watch a loved one suffer this way. I hope your husband understands now. Can you tell when they are coming on? Is there any treatment for you to control them?

Bob

[tsnreb525]

in reply to: Suspecting Graves in Teenage Girl #1176332

Kimberly,

Thank you for the facebook suggestion. I wonder If I can visit that page and not have my daughter know from facebook herself? I dont want to upset her since I am keeping my research to myself for the time being until we are sure of what we’re dealing with.

I will check out the youtube link later on today.

Take Care

Bob

[tsnreb525]

in reply to: Suspecting Graves in Teenage Girl #1176329

snelsen wrote:

Gosh! Sounds like it has been a tough road for your daughter and you! I am so sorry!
My first thought is that she has, and has had, many of the classic symptoms of hyperthyroidism, i.e., Graves. Sure does prompt me to wonder if, anytime in the past six years, if the docs have thought of Graves’, and ordered a thyroid panel lab. Incidentally, for your own knowledge, after the blood draw, most labs have the result in just a few hours, not days or weeks.
So I suggest you move forward now and get those labs. I am sure you have had multiple exposures with the health care system, and doctors, so I am hoping you have the existing relationships that will help you get this done soon. IF you have access to electronic medical records, you can look up the labs yourself, so you know when they are done and what they are. I say this, cause there is no reason at all for you to have to wait and wait and wait for these results. I am not sure from your comment if you have already done this, or not. The road of testing is very fast, with results very quickly.

I have read the PANDA studies, and articles on the NIH website, and as you inferred, there is not much that is known, and a lot of questions exist about its’ diagnosis and existence. And treatment. “further research is needed,” as they say. And with rare diseases, it is hard to conduct studies, becasue of the few number of people who have the rare disease.

Regarding your question about OCD behavior, and outbursts, this can certainly represent a very hyperactive person. You just feel totally crazy, out of control. If you read some of the posts in this forum, you will see this is a consistent theme. We hate to feel like that, and we are not ourselves. Plus, all the other symptoms you listed in your post. Add increased heart rate, and tremor when you hold your arm straight out in front of you.

I think it is time here for me to say that I am “just” another Graves’ person.
I have, however, worked in health care for the past five decades, so some things are more comfortable and familiar to me, having worked in this field all my life.

So, part of me is hoping that she has Graves’, and if she does, I feel sad about all the years that this has not been thought of in a differential diagnosis. But I am making assumptions that I really do not know, about how the path has been for you and your daughter.
Welcome to this site. IT is wonderful.
Shirley

Yes these years have been tough for the family yet I know so many folks with much worse life issues to face I have never really asked for help coping or trying to unload some of dumb questions I have had gnawing at me. The worst part of the outbursts coming from a teenager is we’re (my wife and I) always first to respond negatively as though we’re dealing with typical teen age ATTITUDES rather than taking a step back to try and empathize first but it always ends up a combative situation with my duaghter doing most of the escalation. Thanks to you also for starting me on a thought process about really looking at the progression of testing and doctor interviews. I appreciate your kind thoughts.

Bob

[tsnreb525]

in reply to: Suspecting Graves in Teenage Girl #1176328

vanillasky wrote:

Hi and welcome to our support group.

Her symptoms sound like Graves’.

Is he testing for TSI (Graves’ Anti-bodies?)

That antibody is definitive of Graves’ Disease. That’s how mine was found.

TSH could be surpressed, and FT4 and FT3 should be checked for abnormalities. lots of endos dont’ always test for TPO and TSI so insist on it if he hasn’t. Good luck to you!

Wow I am humbled and grateful for the sincerity of these posts already. We are trult at the very beginning of the process and I am not sure of the technical side of what tests we’re doing. So far 2 swabs have been presented to the lab and we have a Dr’s visit tomorrow. Thanks for starting me on a thought process.

Bob

[Author]

Posts