# Confused! 11 yr old daughter



## Ashaki (Aug 5, 2010)

Hello! I'm new to this site but, in need of some answers.

My 11 yr old daughter was dignosed 4 months ago with suppressed graves disease. The endo. wanted to watch her and do blood work in three months. We had that done the other day at her reg. DR's office. They called me this morning and told me her levels are abnormal again.

Her reg. Dr. told me the other day during our visit its better to have the tyroid removed as it can cause tyroid cancer and with it out its better to take 1 pill a day vs up to 6 a day.

The endo Dr. told me 4 months ago the treatments are meds, Radioactive Iodine and surgery but, he wanted to test her one more time to see if her levels change. And well, they haven't as they are still abnormal.

So, now my questions are....

Is it better to be hyperactive vs hypoactive?
Which form of treatment is best for a child?
Can leaving in the tyroid lead to cancer (I read another site and stated <16 is more prone to cancer of the tyroid).

Its all abit to take in and have read all the long term factors for tyroid issues on both but, its a decission that will effect her as she gets older and Im scared Ill make the wrong one. So, any answers or info that will help me would be great and very much appreciated.

Thanks In Advanced,
Ashaki


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## Andros (Aug 26, 2009)

Ashaki said:


> Hello! I'm new to this site but, in need of some answers.
> 
> My 11 yr old daughter was dignosed 4 months ago with suppressed graves disease. The endo. wanted to watch her and do blood work in three months. We had that done the other day at her reg. DR's office. They called me this morning and told me her levels are abnormal again.
> 
> ...


Hi there Ashaki and welcome. Aw; shoot. I hate this for your young lady.

It is true though; cancer and hyperthyroid/Graves are bedfellows. We are seeing more and more of it and I believe that is only because we have made such medical advances that we are now recognizing this phenomenon.

Neither hyper or hypo is good. Both can damage the heart and other bodily organs. Euthyroid is normal state which is awfully hard to do if the thyroid is left in.

I cannot advise you but only furnish info and support.

This may help!

http://www.thyroidmanager.org/Chapter15/15-frame.htm


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## Lovlkn (Dec 20, 2009)

Ashaki,

I would suggest you get copies of your daughters labs and get a second opinion, maybe from an endocrinologist who has experiences treating children with thyroid disorders.

If you wouldn't mind posting what lab tests they have run so far along with result and ranges.

I know of a woman who successfully medicated her son into remission, I believe he began his journey when he was about the same age as your child.

There are resources to support any decision you make for your child but there are alot of things to consider before permanently ablating a child's thyroid.

What symptoms has your daughter been experiencing?


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## Ashaki (Aug 5, 2010)

Thank you both for your replies!

My daughter is currently seeing an endo DR. as well as her regular Dr. The endo mailed a script for her blood to be taken in 3 months which we had done at the reg. Dr's office the other day. They faxed the report to the endo. who we are waiting to hear back from. (The reg. DR called and told me it was abnormal, not sure what it shows though)

Back 4 months ago the only thing know is the test showed 0.41 and normal range starts at 0.5 I belive they told me. Ill call in the morning for the exact numbers on past and current testing.

My 11 yr old daughter has had 2 episodes less than 1 month apart.

1st time: Complained of head hurting,dizziness, eyes rolled to the left and she fainted (uncounsious and not responsive) to the right, skin pale, sweat cold clammy with lips a blue'ish color, and uncontrolable crying, lasting about 15-20 sec tops

2nd time: Complained of head hurting, dizziness, had her sit down so she didnt fall, skin pale, lip color normal, sweating cold and clammy and didn't faint this time, uncontrolable crying, (she told the Dr she felt everything spinning like a rollercoaster ride she couldnt get off, she could hear me but, my voice was in the distance when I was sitting right next to her). 
Her Blood pressure the afternoon of the 2nd attack at the Dr office was 162/58 sitting and 160/58 laying down. Both attacks happened within 30 mins of her waking up in the morning.The next day school nurse took bloodpressure and it was 112/70 sitting and 114/72 laying down, 2 days after episode at Dr's Blood pressure was 98/72 sitting and 102/72 laying down.

The dr's I first had her at that did the 1st blood pressure that was rather high told me to put candy in her pocket and send her to school. However, the next day I got her a new Dr who has ran alot of test and refered her out to rule out everything possiable. She has been to the cardiologist and was neg. with the test hey ran, her neuroligist ruled out anything going on seizure related or anything nero for that matter. (She has a history of siezures in the left hemisphere of her brain but, had not had issues with this for years and was told her symptoms are not related to this and EEG was normal), they thought she was type 1 dibectics but the endo uled that out and said her symptoms were suppressed grave disease. Blood test 3 months and we will go from there if it came back abnormal again.....Well, here we are its abnormal yet once again.


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## Lovlkn (Dec 20, 2009)

Ashaki said:


> Thank you both for your replies!
> 
> My daughter is currently seeing an endo DR. as well as her regular Dr. The endo mailed a script for her blood to be taken in 3 months which we had done at the reg. Dr's office the other day. They faxed the report to the endo. who we are waiting to hear back from. (The reg. DR called and told me it was abnormal, not sure what it shows though)
> 
> ...


YIKES!

I am curious to see what lab tests they have run.

The phrase "suppressed Graves Disease" is a strange one so I am very interested to see the lab work.

She is not on any medication - correct?


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## Debbie from Milwaukee (Apr 18, 2010)

Ashaki:
So sorry to hear that your daughter is going through these medical problems, but I'm sure she is thankful that you are looking into everything so she will get a correct diagnosis and treatment.

Do you have a children's hospital near you or at least within an hour or two drive? It might be a good idea to consult with your daughter's pediatrition/family doc to see if going to an endocrine clinic connected with a children's hospital would be a good idea. Our family doctor strongly suggested we take my daughter to a local children's hospital clinic when her thyroid was discovered to be high. My daughter was diagnosed and treated for Grave's disease when she was 17, but she most likely has some elements of it at least several years before. This daughter also has additional problems whenever her period comes on, as thyroid and female hormones are very interrelated as well as connected with brain neurotransmitters. I am wondering if your daughter has gotten her first period or is close to it, thus perhaps a reason that the thyroid symptoms are emerging now.

As far as blood tests and scans, I think it would be wise for you to ask for an uptake scan as well as a TSI (for Grave's antibodies), a TPOab and TGab (for Hashimoto's antibodies), a TSH (thyroid stimulating hormone), free T3, and free T4 tests all be given and you can ask for copies of all of these scans/tests and post them here for feedback from others. My daughter's clinic failed to give her an uptake scan as part of the diagnosis. I don't completely understand what it does, but others here can fill you in. This clinic also failed to test my daughter for Hashimoto's. My daughter (who is now 20) has had a resurgence of thyroid problems, and we will find out at the end of August if she also has Hashimoto's.

Here is one really important point: please ask your daughter's doctor if she should refrain from physical activity. When Grave's disease is active, a person's antibodies overstimulate it to produce thyroid hormone, and this can affect the heart and can be very dangerous, even for someone as young as your daughter. While the doctors are deciding about treatment, you can ask if a beta blocker med would be appropriate for your daughter to help her with symptoms of a racing heart.

Good for you for asking all of your questions. Keep researching and asking questions as you continue to search for the best care for your daughter. The two of you will defininitely be in our thoughts and prayers!


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## Ashaki (Aug 5, 2010)

Debbie,

Thanks for the reply and the info.

The endo Dr she see's is at a local childrens hospital in our area.

I just got off the phone with the endo dr and he stated the levels were pretty simular to thoughs taken a few months ago. I'm going later for the results and will post them. He stated he wants to see her in 4 months with repeat of the testing.

He said at this point no meds or anything else for her. I'm however abit confussed as he stated she had suppressed graves disease. Today he stated that with her levels being off several times now she CAN develope a tyroid disorder..hmmmm What I don't understand is why her levels are off to begin with and doesn't matter how often the test is done they are still off.

At, this time she is developing normal and has not started her period as of yet.

I'm stil going to do more research into this and get answers from the DR. but, if he keeps changing what he is telling me then we will find a new Dr that can/will. I really do appreciate all the answers/suggestions all of you have given to me.

Thanks!


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## Andros (Aug 26, 2009)

Ashaki said:


> Thank you both for your replies!
> 
> My daughter is currently seeing an endo DR. as well as her regular Dr. The endo mailed a script for her blood to be taken in 3 months which we had done at the reg. Dr's office the other day. They faxed the report to the endo. who we are waiting to hear back from. (The reg. DR called and told me it was abnormal, not sure what it shows though)
> 
> ...


Please get TSI (thyroid stimulating immunoglobulin) for your daughter. The healthy individual should have no TSI and if they do, that means hyperthyroid and/or Graves'. Depending. There are certain criteria for Graves' which you can look up on that link I provided by going to the Home Page Index.

Here is info on TSI http://www.hopkinsmedicine.org/endocrine/graves/Answer.asp?QuestionID=22

And furthermore, untreated/undiagnosed juvenile diabetes can cause some of the symptoms you have described. High Blood Pressure being one of many. Perhaps she should be tested again by a different doctor than the first one?
http://www.jdrf.org/index.cfm?page_id=101308


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## Debbie from Milwaukee (Apr 18, 2010)

Here is the closest thing to "suppressed Grave's disease" that I could find:

"Subclinical hyperthyroidism

Graves' disease may present only with subclinical hyperthyroidism (normal total and free T3 and T4 with suppressed TSH levels). Subclinical hyperthyroidism has been associated with higher nocturnal pulse rates, frequent premature atrial complexes, an increased risk of atrial fibrillation in elderly people and osteopenia.54 Recently, an increased risk of fracture of the vertebra and hip has been reported in elderly women with subclinical hyperthyroidism. However, there is a spontaneous 40% remission rate during follow-up. Accordingly, treatment of subclinical hyperthyroidism needs to be individualized and based on the patient's age, symptoms and comorbidities. In patients aged over 65 years or those with established cardiovascular disease or osteoporosis, treatment with antithyroid drugs or, preferably, radioiodine is justified. Otherwise, patients can be followed by measuring their thyroid indices every 6 months, with intervention should the FT3/FT4 level become elevated or the patient become symptomatic. My present practice is to treat all patients with subclinical hyperthyroidism for 1 year at least." This paragraph was copied from the following site:

http://www.cmaj.ca/cgi/content/full/168/5/575

If blood tests (including TSI as Andros mentioned) and other thyroid tests indicate that your daughter is hyperthyroid, I think it is time you look into getting a 2nd opinion. I read on one site that was an outline of a lecture for doctors that PROMPT treatment of thyroid imbalances in children is crucial.

So, I think it is important to not only see your daughter's lab tests, but also look at how they have changed over time. If tests are off (as the doctor states), then it is imperative to look into tests for autoimmune causes. I looked at your 1st entry of this thread, and the doc has already had your daughter wait 3-4 months. Now he/she wants you to wait ANOTHER 4 months? Something doesn't sound right here. Also, there hasn't been any mention of an uptake scan. It seems to me that a test like this would eliminate any doubt as to whether this is a "subclinical/suppressed" hyperthyroidism that can just be watched or an active hyperthyroidism that needs to be treated. Our thoughts are with you as you try your best to get the best diagnosis and treatment for your daughter.


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## Lovlkn (Dec 20, 2009)

Ashaki,

You really need to get paper copies of ALL lab work run for your records. It is also helpful if/when you decide to go to another doctor to already have copies of the labs with you.

When you get them don't forget to share them with us ;-)

Lovlkn


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## RussCH (Sep 10, 2010)

Hi Ashaki,
I am a person who was diagnosed with the condition when I was 6 years old. This was way back in 1966. I was given large doses of medication to control my condition until I was 19 years old by which time I had developed Type 1 diabetes. My Thyroid was sugically removed.
The pluses I had were great parents and a brilliant Physician. I am a successful happliy married man with 3 children and 2 grand children.
Guess what I am saying is that with your support and care and the support and care of a good medical team the out come for your daughter can be really fantastic, it has been for me
Hang Tough
Russ


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## Andros (Aug 26, 2009)

Ashaki said:


> Hello! I'm new to this site but, in need of some answers.
> 
> My 11 yr old daughter was dignosed 4 months ago with suppressed graves disease. The endo. wanted to watch her and do blood work in three months. We had that done the other day at her reg. DR's office. They called me this morning and told me her levels are abnormal again.
> 
> ...


Hi there and welcome. This s a shame; I feel badly for your young one!

I am going to tell you straight out what I know. It would appear that hyper/Graves' and cancer are bedfellows. We did not used to know this but now we do.

My humble opinion is there is no reason why your daughter would not do exceedingly well on thyroxine replacement.

On the personal experience level; it is true.........................I had to take so many dang pills every single day and I never ever felt well. Not one single day.

Now that I no longer have a thyroid and am on thyroxine replacement (one pill a day), I am tip top fine. Never felt better in my life. I am 68 year old female and very very active.

That is my input. Others will comment also. The decision is yours to make and we will support that decision no matter which one you make. We are here to help.

And by the way,your daughter's doctor is very well informed.


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## lavender (Jul 13, 2010)

Wow!
Let me first say that my heart goes out to you and your daughter. That's a whole lot for someone so young to be going through, and I can understand your concern for wanting to make the "right" decision.

I had a doctor mutter something about "subclinical hyperthyroidism" to me 5 years ago. Then years of getting sicker with no treatment. My Graves was finally diagnosed after I was hospitalized in hyperthyroid storm this past spring. I feel pretty passionate about encouraging others to get a proper thyroid work up because I feel like a lot of misery could have been prevented had I got the proper care to begin with. Unfortunately with auto-immune issues, I think doctors all too often blow off our symptoms until things reach a crisis level and they can no longer ignore what is going on.

Other people have had good suggestions-get copies of all blood work, don't just trust what the doctor says is "normal" get antibody testing, especially TSI, this can confirm Graves disease. Make sure that when they are checking thyroid levels, they do Free T4 (FT4) and Free T3 (FT3), other T4 and T3 tests are not as reliable.

I really don't like what you said about the endo calling you and making you wait 3-4 more months for an appointment, especially with the episodes you have described. This seems like an unreasonable long time to wait without any further testing of unexplained symptoms. Make sure her docs are checking into other possible causes for her symptoms as well. I know someone who has a thyroid related seizure disorder.

I think I can shed some light on the "suppressed Graves disease." People with Graves disease can be hyperthyroid, then go into remission, then go hyper again at some point in the future. But if someone has the Graves antibodies, they have the autoimmune disorder, whether or not they are actually hyper at that particular time. Some people are able to treat with anti-thyroid drugs for a while until they go into remission, but often hyperthyroid shows up again some time in the future. Also, even if the thyroid is removed, someone still has Graves Disease. They just no longer have to deal with the main issue of being hyperthyroid.

As far as what is better hypo vs hyper. The goal is Eurothyroid. However, I think docs know how to treat hypo much better as my PCP told me hyperthyroid is pretty rare. Drugs to treat hyper basically work by attacking the immune system, which I think can be pretty hard on the boy long term. I was put on huge doses of meds that I had to take 4x a day when I was hyper, and I never felt better.

I had my thyroid out a month ago, and I feel like a whole new person. I now take one thyroid replacement med in the morning. It is replacing something my body would make naturally, but is no longer able to. In my opinion, this is much gentler on the body. I also take calcium supplements due to a complication from my surgery. Again, this is replacing something, not trying to take anything away. From what I know, this is a fairly rare complication, but it is a reason to be aware and cautions before sending your daughter in for major surgery.

I would also suggest that as much as possible, you involve her in the treatment decisions. I know she is young, and as her parent you will have to make choices no matter what she wants. However, she will have to live with her body for the rest of her life, and I think any treatment is most successful if the patient believes it will work.


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