[tsnreb525]

#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

[Naisly]

#1176340

tsnreb525 wrote:

Can you tell when they are coming on? Is there any treatment for you to control them?
Bob

Looking back, I remember a feeling of doom and gloom – very negative. It didn’t matter what anyone said, to me they were wrong or just didn’t understand. This is a feeling I woke up with and carried it through out the day and sometimes it would carry on for a few days.

Everything seemed wrong, whether it was a noise, a person, thing or even my cat. I do have a hypersensitive personality to begin with but I can imagine for those who don’t, how this must feel to them. The doom and gloom for me is because we can’t focus, we hurt, we ache, we have no energy, we worry, we can’t even do meticulous small tasks like write our name, we can’t, we can’t and this in it self would drive anyone crazy. Because of that hypersensitive feeling – all those tasks that lay a head with a feeling of no control over them. This was usually my breaking point, that point of no return – Graves Rage.

It’s very much like being tortured every minute of every day – Enough to break a persons will.

I think, that if family members can help by removing some of the triggers – Like negativity and remove a lot of the daily commotion that goes on in every house hold would help. By commotion I mean things like, the dog needs to be let out, the phone is ringing, visitors are coming and going, the TV is on, the dishes need to be done, the brother is jumping on the couch again etc etc. Most people can deal just fine with this going on around them and think nothing of it – for us, we can’t deal with most of these tasks at times because of the physical aspect, but what puts me over the edge is I’m thinking and seeing all of this in one thought. Think of the movie the Exorcist and how her head was spinning – That’s how we feel.

For you, I would watch if your child is being overly negative because she might be near her breaking point.

Now that my numbers are nearly balanced I don’t get near as many episodes as I did when I was very hyper. In saying this, I can now look back and analyze why, at least for me. It also helped (hate to admit it) that my partner has a humorous side, and when I would get ‘off’ he would reply with, “Oh, gravy.” Which would usually make me smile.

Hope this helps,

~Naisly

[tsnreb525]

#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

[jeanierd]

#1176342

Hello! I’m new to the group – kind of! I joined last January but have not been active. I’m in need of help for my 20 year old who has Graves and had RAI when she was 11. She has been on and off antidepressants and anxiety meds for the last 5 years. She is not currently on any antidepressants. She is now on ADD meds which we think are making her worse. I’ve read that all these symptoms are normal – but what more can we do? The docs don’t listen and she thinks she is going crazy. She had a panic attack in class last week, won’t go to the dining hall and has trouble keeping a job due to anxiety. She see a therapist weekly for emotional help but it was been over a year and I think we are spinning our wheels! Is it time for a phychatrist?

Help!

[snelsen]

#1176343

Hi jeanlerd,
WElcome, glad you are writing again. I have a few suggestions and thoughs for you to consider.

1.Would you consider maybe begin your own thread (new subject in our own words) so people will respond specifically to what you are writing.

2. You have mentioned ADD meds, but you did not mention thyroid labs or meds. Graves is a lifetime thing. Is she on thyroid replacement? I suggest, with new symptoms, or even the recurring ones, that a doctor she likes and trusts, you too, order thyroid labs, first thing. You also mentioned anti anxiety meds. They are also a med that needs careful monitoring.

3. Well, if I were on ADD meds, and I felt they made me feel worse, that is certainly something or further exploration.

5. Because of the meds she is on, a psychiatrist is not a bad idea. Also, a pyschiatric ARNP (nurse practitioner) is another good option. But first, they state of her thyroid needs to be assessed by any doctor who will order the labs, that is a good beginning. An endocrinologist if you can find one, that is challenging sometimes, especially one who is interested in Graves’. But they are out there. How about the docs who diagnosed her Graves’, arranged for the RAI when she was 11? There is a lot to know about her thyroid condition.

Hope this gives you your daughter some things to consider.
Is your daughter in college?
I do hope you find better answers than her current situation.
Graves’ first, I’m thinking.
Shirley

[Kimberly]

#1176344

Hello – Definitely agree with Shirley’s comments. Making sure that your daughter’s thyroid hormone levels are normal and stable is key. Having thyroid levels out of balance can cause panic/anxiety attacks – but other times, there *is* an underlying condition that needs to be treated separately.

This video from our 2012 San Diego conference on the emotional aspects of Graves’ disease might be of interest – the presenter is a psychiatrist who has a very personal knowledge 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).

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

Hope that you can get your daughter some relief soon.

[jeanierd]

#1176345

Shirley,

Thanks for the response. She had RAI at age 11. Last lab values indicated she needed an increase in synthroid and she is on 175 mcg. Call into doc to get new labs done. She decided to stop the ADD meds today because it makes her more anxious. No anti- anxiety meds at present. She is in college – trying to get by day to day. Waiting for doc call, but history shows long time for phone calls to be returned. This is our 3rd doc since RAI.
Therapist seems to help, but I think she needs more help. I know Graves = depression and anxiety, but is there anything that can be done other than dealing with it?

Jeanie

[jeanierd]

#1176346

Thanks! Saw the video a while back. Phone call into doc for the labs. Hope we can find an answer – she is sooooo sad.

[snelsen]

#1176347

I really understand, Jeanie! The day by day stuff is sooooo hard!

I think the best thing for you is to take it one day at a time. Labs next!
I hope they provide information that is helpful for her and for you.
She is probably the best judge of the ADD meds. Might ask her if they need to be tapered, or they can just be stopped. I don’t know. Glad she is off anti anxiety meds at this time. They usually need supervision to discontinue.
What year is she in college, does she have any idea of what she is interested in? It took my children a long time, and several majors, to figure it out!
Shirley

[jeanierd]

#1176348

Shirley,

She is in her second year and is an art major. Still waiting for Doc to return call for lab order. If no response tomorrow I will call the office again and ask to speak to the office manager rather than the nurse. Have phone calls into other health professional seeking their input on good Doc.
Just so hard to see her suffer.
My husband and her dad also has Graves and I never understood the anxiety and depression he experienced until seeing it in my daughter. My nephew also has Graves and went through the same type of depression. There HAS to be an answer!

Jeanie

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