# Scared for my son



## Intell1 (Sep 26, 2010)

I'm new to thyroidboards and have found it several times in doing research because of my son. We've had a very difficult 10 years with my son and I'd be more than happy to share it all as time goes on. He was diagnosed with Hashimoto's last Friday after several weeks waiting to be seen by Children's Hospital in Pittsburgh. He's very symptomatic and has been for years. I have four children and he's the one that has just broken my heart with how many medical issues he's had. I'm trying to do some research regarding his latest lab results and thought it best to post them here in hopes of getting words of wisdom and solid advice. Here's his results and please be honest with what the results mean.

Hgb A1C = 5.4
Thyroglobulin Ab = 3969
Thyroid Peroxidase Ab = 658
TSH = 8.435
T4, Free = 1.25
T3, Pediatric = 1.30
Testosterone, Pediatric = 10.5
FSH = 0.6
LH = 0.8
Prolactin = 2.4

Again, thank you all so much for any help, words of wisdom, advice that you can offer. We've searched for so long to figure out what has been going on with our son, but have always come up empty handed regarding solid results until now. Again, thank you all very much!


----------



## chopper (Mar 4, 2007)

Do you have the reference ranges? Please post them. Most of us are pretty familiar with adult reference ranges but pedes is a totally different story.

I can tell you his "hashimotos antibodies" are pretty high but usually you see it reversed in Hashi's - TPO is usually off the charts, like mine, and TG is usually lower but it really can go either way. My TPO (Thyroid Peroxidase) is in the thousands and my TG (Thyroglobulin) is a lot lower, like 800 or so.

TSH is high indicating hypothyroid and if that number is free testosterone, it appears very low compared to adult ranges but I am certain it must be different in pre-puberty kids. The adult range is like 300 - 900 and my testosterone is like 245 (very low)...again, par for the course with hashimotos. I'll bet his TSH is all over the place. Like mine, it can be 5 or 8 this week and 21 next week. You see that a lot with Hashi's.

I would insist on a TSI (Thyroid Stimulating Immunoglobulins) test as well as a Ferritin test. Again, I need to see the reference ranges in order to comment. Pedes has totally different ranges than adults, especially for the sex hormones.


----------



## Intell1 (Sep 26, 2010)

I have a couple of the ref ranges, but not all of them.

Thyroglobulin Ab
Negative <280 IU/mL
Equivocal 280-344 IU/mL
Positive >344 IU/mL

Thyroid Peroxidase Ab
Negative <60 IU/mL
Equivocal 60-100 IU/mL
Positive >100 IU/mL

These were the only ranges given for the tests. About 4 weeks ago his TSH was 7.28 with a ref range of IU/mL 0.35-4.94, T4, Free was 1.04 with a ref range of NG/DL 0.7-1.48, his LDL Cholesterol was 147 with a normal of >130. I hope this helps. Thank you for responding so fast. I have not sleep more than a couple of hours a night for as long as I can remember because I'm so worried about him.

The other info that I can give is that they put him on Levothyroxine 50 MCG once per day. The doc did say that his pituitary is not doing what's it's supposed to and will address this in a couple of months. My son sleeps all the time and is very fatigued every second of the day. He complains of being dizzy and says very often that he thinks he's going to throw up. He's only been on the meds for 3 days now, but I'm hoping that he starts to feel better soon. He's also over weight and can't seem to drop weight no matter what or how hard he tries. Again thank you all and God bless everyone of you.


----------



## chopper (Mar 4, 2007)

I really need reference ranges for the sex hormones to see how his pituitary is doing. Has he had a pituitary MRI yet? I would suggest one depending on where the sex hormones lie on the range. Were they low?

There's always a slight chance of a pituitary problem and/or tumor (they are almost always NOT cancer).

He needs more tests.

AM cortisol
24 hour cortisol
ACTH
Thyroid sonogram

You can look up above tests, all made by the pituitary.

Rule out pituitary first and continue to address the thyroid. I would really insist on a TSI test too.


----------



## chopper (Mar 4, 2007)

Please read this. I wrote it several months ago and think it may apply to your son from what you describe:

http://www.thyroidboards.com/hashitoxicosis


----------



## Intell1 (Sep 26, 2010)

He did have an MRI a few days ago and thankfully I'm friends with the lead radiologist who read his MRI and gave me the results verbally right after the test. The results of the MRI were that his pituitary is pre-puberty. He said that it should be larger in boys at my sons age that are going through puberty and basically described it as a lazy pituitary. His doc at Children's said that he'll use replacement therapy to replace what the pituitary is not doing. Not sure what that means yet, but would think that he'll place my son on testosterone as a replacement and to kick off puberty. How much should I worry about his antibody numbers? I'm worried about diabetes, thyroid cancer, etc... I was worried about a pituitary tumor surgery. Another question I have is how long could my son have been suffering from this? Since about the age of 3 he's gained weight and had other associated symptoms. He was diagnosed with major depression and OCD and was treated for those with prozac and lexapro, but those meds never worked for him symptomatically and I've always questioned why and that there must be an underlying cause for the depression and OCD since the meds were not effective. I know that doesn't make much sense as it's written, but I know my son and have always known that something wasn't right medically as a cause. I'll see what I can do about getting ref numbers for the other tests and really really really appreciate your help. I'll also go and read your post regarding hashitoxicosis. Thank you so much.


----------



## Intell1 (Sep 26, 2010)

Forgot to mention that the doc did say that that his sex hormones are really low. Again, I'll try to get the ranges for those test and thanks again.


----------



## chopper (Mar 4, 2007)

Ok, now things are making sense. All those years of depression and weight gain could very well have been from the thyroid.

To this day my own father references my days as "before I was crazy" or "after I went nuts" referring back to my hashimotos diagnosis. It really weighs on you emotionally and is not all that different than bi-polar with it's ups and downs.

Poor kid probably feels really crappy with that high antibody score. I know I feel worse as my antibodies rise, usually triggered by stress.

Keep him away from soy and other foods that cause the thyroid to slow like raw broccoli and cabbage as well as those foods with lots of iodine like shellfish and seaweed.

Is he eating anything special? Any vitamins?

You son is not alone with the meds he's been given. You know how many people here, adults, were given anti anxiety or anti psychotic meds before finding out it was hashimotos all along? Lots of us. I personally have a drawer full of old scripts for everything from Xanax to seroquel - all before they figured out what was actually wrong. He'll be ok now that he at least has a diagnosis. Just please watch for signs of hyper while he takes his synthroid like shaky hands, anxiety, panic attacks, sweating, diarrhea, hot, sweaty, sensitivity to light and heat, heart palpitations, high heart rate, dizziness, etc. Hashis tends to cycle between hyper and hypo and when on meds the hyper phases can be exaggerated.


----------



## Intell1 (Sep 26, 2010)

Luckily for us our son is really normal when compared to other kids in being anti vegetable so no soy or raw broccoli for him. He's always been a meat and potatoe sort of kid. We've always thought that his depression and OCD were connected to something rather than simply having those conditions. I know I'm probably thinking of this too simply but I've always thought that if he simply had those conditions that the psychotic meds would have helped and made things better. It's almost like there has been something bigger at work with him and now we know - hoshimoto's. We're hopeful that the depression and OCD will go away now that he's being treated for the root cause. He's been on the Levothyroxine for 4 days so far and we've seen no improvements, but I do understand that it will take some time for it to build up in his system and really start to work. He's still complaining of feeling like he's going to throw up, being dizzy, etc... Those were actually the complaints that led us to the MRI. I would love to see things turn around for him in not having the depression, OCD, and start to see some of the weight come off for good. He's such a sweet kid with a big heart and really deserves to be normal or as close to it as we can get him. You've been so helpful and I can't tell you how much I appreciate your posts.


----------



## Andros (Aug 26, 2009)

Intell1 said:


> I'm new to thyroidboards and have found it several times in doing research because of my son. We've had a very difficult 10 years with my son and I'd be more than happy to share it all as time goes on. He was diagnosed with Hashimoto's last Friday after several weeks waiting to be seen by Children's Hospital in Pittsburgh. He's very symptomatic and has been for years. I have four children and he's the one that has just broken my heart with how many medical issues he's had. I'm trying to do some research regarding his latest lab results and thought it best to post them here in hopes of getting words of wisdom and solid advice. Here's his results and please be honest with what the results mean.
> 
> Hgb A1C = 5.4
> Thyroglobulin Ab = 3969
> ...


Wow!!! I have never seen thyroglobulin Ab that high. This does suggest that cancer definitely and I do mean definitely has to be ruled out.

It is my humble opinion that a radioactive uptake scan should be done to see if there are nodules and other irregularities and if so,what they are.

Please read....

http://qjmed.oxfordjournals.org/content/59/2/429.full.pdf

http://www.thyca.org/thyroglobulin.htm

On what basis did the doctor diaganose your son to have Hashimoto's?


----------



## Intell1 (Sep 26, 2010)

The doc diagnosed based on the antibodies being so high. I thought the numbers were really high myself because when I got the results I went off to see if I could find folks with similar numbers and didn't find anyone even close to my sons numbers. I'll call the doc and request these other tests, but things seem to move soooooo slow in getting seen or getting tests completed. Shouldn't the doc be thinking that we need to rule out cancer? I wish I knew more about all of this.


----------



## chopper (Mar 4, 2007)

TPO antibodies are the main culprit of Hashimotos. My TPO is like 3000+ but my TG is usually much lower, sometimes as low as 200 and as high as 900 but never as high as your son's. I haven't seen a TG that high either.

A thyroid biopsy might not be a bad idea. That TG is indeed very high - the highest I've ever seen as well and yes, the doctor should want to rule out cancer.

Something funky is going on for sure and you have to get to the bottom of it. Do you have a Mayo Clinic anywhere near you? It might be worth a looksie....they have a lot of resources there to get a proper diagnosis and treatment for more complicated cases. I would really want that TSI test also as well as the RAIU radioactive iodine uptake scan test to see what's going on there.


----------



## Andros (Aug 26, 2009)

Intell1 said:


> The doc diagnosed based on the antibodies being so high. I thought the numbers were really high myself because when I got the results I went off to see if I could find folks with similar numbers and didn't find anyone even close to my sons numbers. I'll call the doc and request these other tests, but things seem to move soooooo slow in getting seen or getting tests completed. Shouldn't the doc be thinking that we need to rule out cancer? I wish I knew more about all of this.


Absolutely the doctor should be thinking this about the cancer. TPO in high titers is commonly found in Hashi's but by no means is it diagnostic. High titers are also found in cancer.

This is in reference to the TPO and I will furnish the link also.

What does the test result mean?

Mild to moderately elevated levels of thyroid antibodies may be found in a variety of thyroid and autoimmune disorders, such as thyroid cancer, Type 1 diabetes, rheumatoid arthritis, pernicious anemia, and autoimmune collagen vascular diseases. Significantly increased concentrations most frequently indicate thyroid autoimmune diseases such as Hashimoto's thyroiditis and Graves' disease. 
http://www.labtestsonline.org/understanding/analytes/thyroid_antibodies/test.html

As far as I know, FNA (fine needle aspiration) is diagnostic for Hashi's provided certain Hurthle Cells are evident in pathology.

You may wish to read this. You know your son best. So read it and then tell me if you still think the diagnosis was correct.
http://www.thyroidmanager.org/Chapter8/8-frame.htm

Thyroid Manager also has a pediatric section. 
This has a section on cancer in children. http://www.thyroidmanager.org/Chapter8/8-frame.htm

The thing is, and I am sure you agree, we need to be sure.


----------



## Intell1 (Sep 26, 2010)

I talked to the doc and he said that he will be scheduling my son for more testing to include an ultrasound. My son still isn't feeling any better today, but it is still only day 5 on the hormone replacement. I hope and pray that he starts to feel better soon. A new complaint is muscle pain in his arms, leds, and sides. Could that be a result of the hormone replacement that he's on? He's also still complaining of feeling like he's going to throw up, being really dizzy, and being tired all the time. Those were symptoms prior to the new meds. Thanks again for all the help! Really means a lot to have so many smart folks to share with and get advice from.


----------



## Andros (Aug 26, 2009)

Intell1 said:


> I talked to the doc and he said that he will be scheduling my son for more testing to include an ultrasound. My son still isn't feeling any better today, but it is still only day 5 on the hormone replacement. I hope and pray that he starts to feel better soon. A new complaint is muscle pain in his arms, leds, and sides. Could that be a result of the hormone replacement that he's on? He's also still complaining of feeling like he's going to throw up, being really dizzy, and being tired all the time. Those were symptoms prior to the new meds. Thanks again for all the help! Really means a lot to have so many smart folks to share with and get advice from.


I guess that is a start w/the ultrasound but they are notorious for missing a lot of stuff due to technical restrictions and human error. A radioactive uptake would be so much better (RAIU.) In my humble opinion.

Yes; Levothyroxine can cause some uncomfortable symptoms because it takes the patient through all the bad places in order to get to the good place. It takes 8 weeks for T4 to build up in the system at which point labs should be done to see if the current dose should be titrated upward or downward.

Wonder if your son has low ferritin as well. It happens a lot w/ autoimmune disease. Some of the symptoms sound like it.

Here is info on that.

Ferritin http://www.thewayup.com/newsletters/081504.htm


----------



## Intell1 (Sep 26, 2010)

In our conversation he didn't say what tests that he wants to do, but my plan is to have all the tests you guys have mentioned here so that nothing is left out. I'm really worried about his antibodies being so high and also seeing how he poorly he feels all the time. I wish there were a way that I could make it better for him and would readily take all of this on for him myself. He saw a kitten that a friend of my wife had and really wanted it so without even really thinking about it I was off on an 8 hour round trip last night to pick it up for him. He couldn't be happier at the moment and the kitten has really taken to him and hasn't left his side since it's been here last night. Crazy things we do for our kids.


----------



## usmc4myson (Sep 26, 2010)

The things we do for love, right?? I can imagine that the gift of this kitten meant more to him than anything. :-D 
Pets are scientifically proven to help us heal and feel better...so bravo to a Dad who would do something like that for his boy!!


----------



## Intell1 (Sep 26, 2010)

Thanks Amy! It is amazing to see them together. It's almost like this kitten knows he doesn't feel good. They're two peas in a pod and have been together since the kitten arrived to include sleeping together. Pretty cute and is putting a smile on my sons face so one of the best things I've done all year.


----------



## Andros (Aug 26, 2009)

Intell1 said:


> In our conversation he didn't say what tests that he wants to do, but my plan is to have all the tests you guys have mentioned here so that nothing is left out. I'm really worried about his antibodies being so high and also seeing how he poorly he feels all the time. I wish there were a way that I could make it better for him and would readily take all of this on for him myself. He saw a kitten that a friend of my wife had and really wanted it so without even really thinking about it I was off on an 8 hour round trip last night to pick it up for him. He couldn't be happier at the moment and the kitten has really taken to him and hasn't left his side since it's been here last night. Crazy things we do for our kids.


They know for a fact that having a pet goes a long way for a person who is not feeling well. This is wonderful!


----------



## Guest (Sep 29, 2010)

Hope your son is enjoying his new campanion! Animals can be so comforting to you. I have a Sharpei and a Mini Dashound that mean the world to me. They stay with me all the time and even seem to know when I am having a really bad day.

I am sure your son's new friend will be a great comfort and support for him. I am so glad his dad is such a wonderful father to do this for him.

Sending Hugs & Blessing your way!


----------



## Intell1 (Sep 26, 2010)

Thanks to all! There's absolutely nothing that I wouldn't do for him. Question? He's been on the Levothyroxine 50 mcg for six days now. This morning will be day 7. He's taking the med and waiting at least 60 minutes before eating anything. Maybe I'm too much of a worry sort of father, but last night he was still complaining of being dizzy and feeling like he wants to throw up. Also still tired all the time. I know the tired feeling is a result of hypothyroidism, but I'm still really concerned about him being dizzy and nauseous all the time. Are those symptoms of hypo, the meds, or something else? Is there anything I can do about it? As always you all are great and your help is very much appreciated!


----------



## chopper (Mar 4, 2007)

Hello,

I feel so bad for your son having to go through this at such a young age. I am going to give you my straight thoughts about this so it may help or it may not. I am not a doctor and more specifically, have little experience speaking with or about kids with thyroid problems so take what I say with a grain of salt and ask your doctor about options.

I am not sure why your son's pituitary is not catching up with his growth. His testosterone should be much higher and that will affect his growth and muscle development as well as his mood.

Personally, I think there is a thyroidectomy in his future. Again, I don't want to scare you but those thyroid antibodies that are attacking his gland will never just go away - that's a fact and that portion has nothing or little to do with the pituitary so he has at least 2 different things going on. How do you control a thyroid that goes up and down so quickly? What happens to your son as he takes his daily dose of thyroid and his physical thyroid decides to kick back in? You get his thyroid removed and he can live quite well on thyroid replacement his entire life and it will not affect the longevity or quality of his life. I've heard of 3 year olds getting thyroidectomies. Now, without a thyroid to worry about, you address the problem of the pituitary and see if the high antibody count had something to do with it. It is possible that once his diseased thyroid is out of his body, other things may come into the normal range, like testosterone. When the thyroid is messed up everything goes crazy - the cholesterol required to produce testosterone gets thrown off, kidneys are stressed, the mind is stressed, the entire body is stressed. Get rid of one problem and let the healing begin and perhaps other things will fall into place once his numbers stabilize.

I had a lot of trouble with Synthroid and to this day still don't take anything despite my high TSH of around 14. When I take Synthroid I get very shaky and achy and get that dizzy throw up feeling as well. His symptoms very well could be from the Synthroid or it could be from being hypo. 

My personal opinion is that he cannot be controlled with thyroid replacement at this time because his thyroid is sputtering all over the place and Levo is only going to add gasoline to his fire - that's my thoughts. I may not be correct. 

Sometimes you have to fight through the initial period of really crappy symptoms when you first start replacement and then one day your son wakes up feeling great after 2 months of hell trying to get the right dose. Other times, depending on what's really going on inside, he'll only be adding fuel to the fire making things worse. It's a very tough call. If the thyroid is removed, then there's no question about it that he can get a regular daily dose and be steady forever because his own body will no longer be producing any thyroid of its own.

Your son's A1C is also on the high side of normal for his young age. Most doctors want to see an A1C sub 5. Your son's A1C was 5.4. I am way overweight myself at 6' 0" 340 pounds and my A1C is 4.8. My friend who has full blown diabetes has an A1C in the high 6's so your son is probably pre-diabetic. Did the endo make any comments about his A1C? Has he taken a fasting blood glucose? As a worrying Dad myself, I would probably go onto ebay and pickup a blood glucose kit and test him in the morning, before breakfast to see where his glucose is. Normal should be well below 100, probably around 82 for a normal kid. Here's a link to the kit I have. It's very good and you can prick your forearm which doesn't hurt at all:

http://shop.ebay.com/?_from=R40&_trksid=p3907.m570.l1313&_nkw=one+touch+ultra+mini&_sacat=See-All-Categories

There may be some difficult days ahead as you get your son fixed up but I think he'll be just fine in the end. I would INSIST on getting that TSI test as soon as possible. If he tests positive for TSI, I would probably stop the Synthroid and work toward a thyroidectomy.

Your son's numbers are a lot like mine which is why I referred you to my piece on Hashitoxicosis. Did you have the chance to read through some of it? 

How old is your son by the way?

Additionally, you need to get him a Cortisol test. Cortisol is also controlled by the pituitary. If the pituitary is not functioning, it is very possible his Cortisol is off and Cortisol works close with adrenaline so if Cortisol is off, adrenaline may be as well and that in itself could cause the dizzy feeling.

I would want a comprehensive test / retest if possible - it would be a lot of blood for a little kid but it should move you forward quickly - taken all at the same time:

Serum Ferritin
Thyroid Stimulating Immunoglobulins (TSI)
Thyroglobulin Antibodies (TG Ab)
Thyroid Peroxidase Antibody (TPO Ab)
Free T3
Free T4
Total T3
Total T4
TSH
Testosterone, Free
FSH, LH
TIBC, Total, % (Total Iron Binding Capacity)
Cortisol, AM
Cortisol 24 hour (if possible) (24 hour urine test - pee in a jug)
B12
Calcium
Magnesium
AM Fasting Glucose
ACTH (Adrenocorticotropic Hormone)
IGF-1 (Insulin like growth factor 1)
DHEAS (Dehydroepiandrosterone)


I know the list above is crazy to ask of a young kid but with a complicated problem and knowing what I know and as a Dad, these are the tests I would demand to get to the bottom of the problem. These tests above will without a doubt give you a much clearer picture of what's going on.

If you've got the time to do some research, you can look up each of these tests here and see why I ask that each be tested&#8230;.see where my reasoning takes me on this&#8230;.they're all related pretty much.
http://www.labtestsonline.org/

Please keep us posted.


----------



## Andros (Aug 26, 2009)

Intell1 said:


> Thanks to all! There's absolutely nothing that I wouldn't do for him. Question? He's been on the Levothyroxine 50 mcg for six days now. This morning will be day 7. He's taking the med and waiting at least 60 minutes before eating anything. Maybe I'm too much of a worry sort of father, but last night he was still complaining of being dizzy and feeling like he wants to throw up. Also still tired all the time. I know the tired feeling is a result of hypothyroidism, but I'm still really concerned about him being dizzy and nauseous all the time. Are those symptoms of hypo, the meds, or something else? Is there anything I can do about it? As always you all are great and your help is very much appreciated!


Ferritin Most of us w/ TD have low ferritin.

http://www.thewayup.com/newsletters/081504.htm


----------



## Intell1 (Sep 26, 2010)

Our update today is that my son has been on the meds for 7 days now. Still tired and fatigued and is still complaining of being sick to his stomach and dizzy. The good news is that he didn't mention it as much yesterday. His biggest complaint today is that he has pain on his left side near the rib cage. I asked and he said that he didn't do anything and that it just hurts. On the brighter front the new kitten has really become his little buddy. Hope you all are doing well today!


----------



## drahaskell (Oct 1, 2010)

You son's condition is obviously very complex and requires a number of points of view from a variety of clinicians. There is no one solution.
My specialty is thyroid and adrenal problems. I am a naturopathic physician with 27 years of experience and published two books on these subjects with special emphasis on Hashimoto's.
There is too much to transmit through this comment but I invite you to attend a free webinar on Hashimoto's I'm hosting this next week. I'll cover the primary causes and some specific nutrients which research has proven to be effective for reducing thyroid inflammation and thyroid antibodies. I'll also cover the necessity in most cases of thyroid medication and the various types available.
I hope you can join me. Simply go to HopeForHashimotos.com for more information.
All the best,
Dr. Haskell


----------



## CA-Lynn (Apr 29, 2010)

Haskell is a "naturopathic physician" who is selling his books/other materials.

Spam.


----------

