# Is 'block and replace' treatment appropriate for 11-year-old?



## ColinsMom (Jun 12, 2012)

We just got back from a visit to the endocrinologist. Here are my 11-year-old son's labs:

*TSH: 5.04 H*, range .5-4.3 (down from 8.07 and 8.82 since starting 25mcg of Tirosint)

Free T4: 1.1, range .9-1.4 (was 1.1 and 1.0 previously)

*TSI: 312% H *(no range given)

*Thyroglobulin Antibodies: 2614 H*, range <20

*TPO Antibodies: >1000 H*, range <35 (lab does not report actual results higher than 1000)

My son's Tirosint dose was changed to 25mcg/38mcg (alternating dose of 25mcg one day and 38mcg the next).

We had a thyroid ultrasound done in March and no nodules were found, but one side is more enlarged than the other.

The doctor mentioned Hashitoxicosis today but didn't elaborate. He also ordered labs to check my son's adrenal function. And given our family's complex endocrine problems, the doctor mentioned possible genetic testing for autoimmune polyglandular syndrome.

At this point, I'm not sure what questions to ask or what treatment is most appropriate. I trust our doctor but want to be proactive since I know that having an autoimmune disease makes it more likely to develop another.

Should I ask about my son taking medication to address the high TSI level or is Tirosint all he needs? I've read about block and replace but didn't know if this was appropriate for an 11-year-old. I just want to shut down this autoimmune attack...my poor guy.

And are there other autoimmune markers that we should ask the doctor to look at given there's quite a lot of antibody activity going on?

Is there a reason to have about biopsies or uptake scans? Or to look at the pituitary gland via MRI? Or maybe the ultrasound is enough?

My son also has a soy allergy and GERD. He had a negative biopsy for Celiac Disease. (My biopsies were negative too, but I can't tolerate gluten.) Also, he has vocal cord nodules and SEVERE anxiety. I know the anxiety can be a symptom of thyroid problems but we are at a point where we think it should be treated separately. I don't want to wait on finding the right Tirosint dose...that could take a long time since he's apparently swinging between hyper and hypo. Would the antibodies alone cause him to be anxious?

I've struggled with thyroid problems for years so it's upsetting that my son is going through this so early in life. We really like our endo. I just want to make sure I'm asking the right questions.

Thanks everyone!


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## chopper (Mar 4, 2007)

My God, that poor kid must be crawling out of his skin. No wonder he has anxiety. Think about what TSI stands for - Thyroid *STIMULATING* Imunoglobulins. Those suckers alone make you feel like you are ramped up so what does the doctor do? He gives him even more T4 to put gasoline on the fire. I'll bet his heart rate is real high, he poops 5 minutes after meals and gets real tired soon after any physical exercise.

Your son's labs are very close to mine. Have you read my story about Hashitoxicosis?

http://www.thyroidboards.com/hashitoxicosis

I hate to be the bearer of bad news and others may consider your son's young age and dispute my opinion, but that thyroid has got to go. Its the only way he will become regulated. I'm not a doctor and I may be wrong but I have a lot of experience with Hashitox and others with Hashitox and it all ends the same way most of the time - with a Thyroidectomy.

All I know is with numbers that out of control he must feel like crap all the time. Those antibody numbers are pretty high and when they flare up you feel utterly miserable. As his mother, please understand what he is going through too. Mood swings not all that dissimilar to bipolar disorder are common. You feel wired one minute and exhausted the next.

Personally, I don't think block and replace works. Its just extremely difficult to titrate how much of what meds are needed and when since his numbers are constantly changing. It's like trying to grab a fly out of the air with a pair of chop sticks.

Is he having panic attacks all the time? How about heart flutters and heart palpitations?


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## Octavia (Aug 1, 2011)

Oh...this stinks. At age 11, with these labs, I don't think I'd want my son going through years and years of ups and downs with various drugs, waiting for the thyroid to die off, at which point he'll still be taking medicines for the rest of his life. And that's my perception of what tends to happen to patients with Hashi's...I could be very wrong. I think I'd be considering or at least asking about the possibility or thyroidectomy surgery and whether that might benefit him in the short run and the long run.

Disclaimers: I have no children. I am not a Hashi's expert.

Curious to see others' thoughts on this.

EDIT: nasdaqphil posted at the same time as me. We're pretty much on the same page on this, but he has much more experience with Hashi's.


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## joplin1975 (Jul 21, 2011)

Agreed. I don't have kids but I couldn't in good conscious watch a child endure all that.

Kids bounce back from surgery quicker than us old folks. I would imagine he would feel immediately better if the gland was gone.


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## ColinsMom (Jun 12, 2012)

Thanks for quickly replying with your input.

nasdaqphil...to answer your question about panic attacks, yes, he does have them and it seems more often at night. Sometimes he has trouble sleeping then. And he just always seems on edge and is easily irritated. Small things set him off and the result is a full-blown melt down. He gets frequent stomach aches and uses the bathroom often too.

Funny you mention the swings possibly looking like bipolar disorder. I was diagnosed with hypothyroidism in 2005 and at the same time, I was *labeled* bipolar. My symptoms were later labeled ADHD instead. (Hold those thoughts for a moment.)

Just recently, I flew to LA to see a new endocrinologist, who's also a researcher and professor. He confirmed that I have Hashimoto's. My TgAb are in the high 400s and my TPOAb are just slightly elevated. Today after researching Hashitoxicosis a bit, I sent my doc an email and asked for lab orders to get my TSI levels checked. Currently, I'm being tested for cyclical Cushing's. My thought is that what looks like symptoms of cortisol swings may actually be swings from hypo to hyper. An argument for this is my TSH levels, which were 10.6 before I went to see my new doc and then .3 when I had my labs drawn while in California. This is just a theory of course, but it might explain the misdiagnoses of bipolar and ADHD as I've never responded to treatment for these conditions (...that I don't have).

I think my son's endo was quite shocked at the antibody results, as I was, as you are... I'll certainly ask about thyroidectomy. I have been stewing all day thinking about how out of control he must be feeling on the inside.

Thankfully we caught this though, and the only reason we did was because we were checking my son's IGF-1 levels. I have two children with growth hormone deficiency, plus I have GHD in addition to Hashis, Vit D deficiency, fibromyalgia, non-celiac gluten sensitivity, chronic atrophic gastritis, and B vitamin deficiencies including B1/thiamine and B12. (This is why my son's endo mentioned that checking for polyglandular autoimmune syndrome might be a next step.) My son who's GHD also has a chiari malformation, my daughter a Rathke's cleft cyst, and me, an asymmetrical pituitary gland and deviated pituitary stalk suggestive of a microadenoma that's not showing itself via 3T MRI. To top if off, my husband has Type 1 juvenile-onset diabetes. We're one big endocrine mess in our family, a researcher's dream team! Not easy to manage one of these conditions, let alone many.

If we try to treat my son's anxiety now while we are trying to get things with his thyroid sorted out, are there any medications that work better than others? I want to get him some relief.

Is tyroidectomy an involved surgery? Inpatient or outpatient? And what type of surgeon performs this operation? An ENT? Can anyone give me information about life after a thyroidectomy? What's treatment like then? And what happens to the antibodies? Do they just get turned off once the thyroid tissue is gone from the body?

Sorry for all the questions...and thanks for your help!


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## Andros (Aug 26, 2009)

ColinsMom said:


> We just got back from a visit to the endocrinologist. Here are my 11-year-old son's labs:
> 
> *TSH: 5.04 H*, range .5-4.3 (down from 8.07 and 8.82 since starting 25mcg of Tirosint)
> 
> ...


Goodness; this is so not good! We all have a soft spot for the little children who suffer w/illness and I am at the top of the list.

Many hugs and prayers for your little boy!

Okay; thoughts coming to mind. Are we certain that the vocal cord nodules are not ectopic thyroid? Sublingual thyroid?

The high thyroglobulin antibodies and Thyroxine Peroxidase Ab are of a great great concern for this is "suggestive" of cancer.

TSI is through the roof as you well know. I personally don't think Block and Replace is going to work well. And given

Also, ultra-sounds at times do leave a lot to be desired. If it were me, I would insist on RAIU. That would mean your son would have to be off thryoid meds for a time though.

And, I sure am not a doc but I do question given thyroxine replacement when TSI is through the roof.

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism. 
http://www.medicineonline.com/topics/t/2/Thyroid-Stimulating-Immunoglobulin/TSI.html

And I have a question for you, mom! What symptoms make you think he is swinging between hypo and hyper?

Second question..........
Has this doctor ever run a FREE T3 lab test which is the active hormone?

http://www.healthtestingcenters.com/freet3.aspx

And most importantly; no harm in a second opinion.


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## Andros (Aug 26, 2009)

Octavia said:


> Oh...this stinks. At age 11, with these labs, I don't think I'd want my son going through years and years of ups and downs with various drugs, waiting for the thyroid to die off, at which point he'll still be taking medicines for the rest of his life. And that's my perception of what tends to happen to patients with Hashi's...I could be very wrong. I think I'd be considering or at least asking about the possibility or thyroidectomy surgery and whether that might benefit him in the short run and the long run.
> 
> Disclaimers: I have no children. I am not a Hashi's expert.
> 
> ...


Add me to the page. I worry about cancer also.


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## joplin1975 (Jul 21, 2011)

ColinsMom said:


> Is tyroidectomy an involved surgery? Inpatient or outpatient? And what type of surgeon performs this operation? An ENT? Can anyone give me information about life after a thyroidectomy? What's treatment like then? And what happens to the antibodies? Do they just get turned off once the thyroid tissue is gone from the body?
> 
> Sorry for all the questions...and thanks for your help!


Sure!

First, wow, you've got your hands full. I'm sorry and I do hope we can be helpful!

I never had surgery before my TT and am doctor phobic. I had panic attacks before the surgery and was absolutely terrified. As I've told everyone here, I so wish I could "hear" and really process the "this is an easy surgery" message. I'll qualify this by saying everyone is different and there are a smattering of us who did not have a great experience, but the vast majority had a relatively easy time.

The surgery is inpatient. They usually ask that you stay one night for two reasons: 1) swelling is an unlikely but real possibility, as the neck does not drain well. They want to make sure there's no swelling to impede breathing; and 2) occasionally, there will be damage to the parathyroid glands, which regulate calcium. Calcium levels can impact cardiac function, so the morning after the TT, everyone gets their calcium levels checked. Some people take Tums to boost their calcium (I did not).

I took one Lortab the morning after surgery because I had a very long trip home and the nurses more or less insisted. From then on, I just took advil. I had virtually no pain. Some "tightness" around the incision, a stiff neck, a slightly sore throat, but no pain. Fifteen minutes after waking up in recovery, I was taken back to my room, was up walking, talking, and drinking.

I haven't had my antibodies checked since surgery (they were more worried about TSH suppression), but I would suspect they are way down. I say that because, obviously, the target is now removed, but more practically, I feel so fantastic. I'm not in pain for the first time in a decade (joint/muscle pain), my stomach issues have more or less cleared up, no more heart palpitations, etc etc etc. For some people with what I assume would be more advanced or complicated auto-immune issues, they need to go or remain gluten free, but glutens never seemed to impact me either way.

I will say that the difficult part of the surgery was regulating the medication after surgery. It's not fun and as you know, the process is time consuming. But once the levels are correct, wow, what a magnificent difference.


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## chopper (Mar 4, 2007)

ok...lots of info randomly thrown out there for you...ready?

For the panic attacks Xanax works well but it IS addictive. The best way to alleviate the panic is to alleviate the broken thyroid. The thyroid is causing this. Get rid of the gland.

Next - Sex hormones - sex hormones and bad thyroids go hand in hand. I have almost no testosterone (214 on a scale of 299 - 900). It is very common.

Cortisol swings - Bunk - garbage.....that's my personal opinion.....cortisol is reacting to the adrenal surges being caused by his bad thyroid.....yours too probably. Can you both have a bad pituitary? Yes, but it is rare. My cortisol is also messed up - its borderline high most of the time and a lot of that has to do with the thyroid as well.

Tests to rule out everything:

TSH, Free T3, Free T4, Total T3, Total T4,
Prolactin, Testosterone Free and Weakly Bound, FSH, LH, Serum Ferritin, Total Iron Binding Capacity (TIBC), I forgot the test for the adrenals but get that too....
Pituitary MRI (I doubt its needed but will rule out pit tumor)
24 Hour Cortisol (Pee in a jug for 24 hours - BEST TEST for Cushings related)
RAIU - RadioIodine Uptake Scan

You said your son was allergic to soy. I'll bet he's "allergic" to iodine too. Soy is a strong goitrogen - it hinders the thyroid from doing its job. Iodine is one of the main ingredients in thyroid hormone. I'll bet your son goes nuts if you give him a nice big basket of shrimp. Shrimp has lots of natural iodine, as does most shellfish. I eat shrimp and I get real hyper feeling.

Your son will ALWAYS have antibodies. They never go away. At times they lessen in number for a little while but they never go away. However, those antibodies are programmed to only attack the thyroid. Remove the thyroid and where do they go? Well, I don't know exactly but I do know they have nothing left to attack so they can no longer cause symptoms.

I am willing to bet with his TSI so high, most, if not ALL of his problems are associated with his thyroid and I would not even begin looking elsewhere until that was resolved.

To put it into perspective, my TSI hovers around 185 and I feel like **** all the time. Your son's is 300+. Once, about 3 or 4 years ago, I got a little break. Out of the blue I felt "normal" for about 4 or 5 months. It was awesome but short lived. During that time I was tested and my TSI had gone down during a natural cycle to around 50 or so. I felt wonderful. Sure enough, it eventually started to climb back up and I knew it right away. I went from almost totally normal feeling to all the craziness once again. It affects EVERYTHING. You want to kick the dog and yell at the kids and laugh and cry.....like a friggin madman....really. It really screws up your moods and gives you a very short fuse.

Xanax and Propranolol (a beta blocker) will help him with the anxiety and high heart rate. You can ask your doctor about that but again, Xanax can be dangerous at such a young age - its addictive and should be weaned off if on it for a long time. Dont go cold turkey....ask your doctor.

I'll add some more later...finger hurt....google those tests above if you are not familiar with them. If it were my son, I would check off each and every one of them eventually.


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## ColinsMom (Jun 12, 2012)

I really appreciate all the support. Thanks, everyone. I'll try to answer some of the questions posed...

Really, I've never connected my son's symptoms to being hyper or hypo until now. We didn't even know he had a thyriod problem until just a few months ago. With the benefit of hindsight, I guess my son's real panic attacks (not generalized anxiety) are a hyper symptom. He's sometimes verbalized that he feels strange, 'like something bad is going to happen,' and that he's short of breath and his heart is beating fast. As I said above, these episodes are more frequent at night and there's no pattern to when they happen. I attribute periods of sluggishness and muscle pains to him being in a hypo state. Even my son's weight tends to fluctuate. He's weighed as much as 80 lbs but was only 74 lbs at the endo this week.

We are seeing a pediatric ENT at Children's Memorial Hospital on Saturday. (I wish more docs had weekend appointments!) We were referred by this doc by my ENT who was keeping an eye on my son's vocal cord nodules. He's also the doc that referred us to speech therapy a year ago. My son saw the therapist twice a week for the month and since then we've been doing voice hygiene work at home. There's been no improvement and often my son will lose his voice by the end of the day. His voice sometimes doesn't come out when he tries to speak or it cracks and is hard to understand.

Anyway, here's the peds ENT specialties: Head and neck masses/tumors, brachial cleft cysts, thyroglossal duct cysts, thymic cysts, cystic hygroma/lymphatic malformation (any site), mandibular/maxillary tumors, chronic adenopathy, neoplasms of the neck, angiofibroma, thyroid tumors and adenomas, tumors of the parotid and submandibular gland, salivary disorders, repair of mid-line cervical cleft; Acupuncture for sinus, digestive and pulmonary disorders, and complaints of pain.

I'll certainly ask how we can know for sure that the vocal cord nodules aren't ectopic thyroid tissue. I did a search on that topic and see that tissue may be found near the vocal cords but not on them. I guess there's a possibility though so good to rule out. I'm also going to ask about whether he's done thyroidectomies for Hashitoxicosis. Even as a Hashis patient, I'd never heard this term before this week. My endo in Calif. wrote a book on thyroid disease, so I looked in that for information but there was just a small mention in the Grave's Disease section.

I don't know if there's relevance to what's going on with my son's thyroid issues, but he also has high triglycerides. They were in the 300s in March when the endo checked, then down to just under 200 when the pediatrician repeated a lipid profile. All of his other levels were good. And he's not overweight. In 2008, my son had cryptic tonsils removed; for some reason his tonsils had filled with small calcified stones.

Finally, re: Free T3, that's part of our new lab orders, plus 8 a.m. fasting cortisol and other adrenal function tests. Are there other thyroid antibodies that we should check or are TSI, TPOAb and TgAb the only ones we need to look at? And nasdaqphil...I'll ask about getting the sex hormone testing too. I'm familiar with the 24hr UFC...have done lots of those recently and the 10hr tests from 10pm-8am; my doc looks at cortisol:creatinine ratio for that one.

If you have any suggestions of questions I should ask the ENT on Saturday, please pass them along.

And joplin...thanks for describing the surgery. It doesn't sound terrible. My son recovered quickly from his tonsilectomy. And he recovered quickly from surgery to remove a dentigerous cyst from his lower jaw. But now that his thyroid problems are coming to light, I wonder if that cyst might have been part of a bigger issue. I'm going to try and track down the biopsy results...

I'm still stunned that my son's TSI (and other antibodies) is so through the roof and what this is doing to his poor body. Lots to process this week. Trying to wrap my head around all of this makes treating GHD seem easy. Seems a thyroidectomy will be the best treatment but now it's finding a doctor who will agree that might be a challenge...


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## ColinsMom (Jun 12, 2012)

Forgot to ask...Can someome have thyriod cancer without nodules? And what tests could my son have to rule out cancer?


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## chopper (Mar 4, 2007)

The test for cancer really is an FNA (Fijne Needle Aspiration,....a biopsy) of the thyroid gland however, that doesn't catch everything and is hit or miss. If the doc happens to poke cancer cells then you know its cancer but the odds are pretty small. They usually only do like 6 or 8 needle sticks per side, if that so the sample is relatively small. A RadioActive Iodine Uptake test can tell doctors a lot about the potential for cancer as well but again, nothing is for certain until that sucker comes out during a thyroidectomy. At that point they take it all apart to see if there was any cancer anywhere in the gland.

It certainly sounds like your son has a lot of nose/throat/mouth issues. They might be related.

Cholesterol and triglycerides will get messed up too because testosterone and other sex hormones help regulate that and more than likely his sex hormones are off too. Is he normal size and weight? I don't know about 11 years old if you still see him naked but are his genitals of normal size? If his sex hormones are off too he could have smaller than normal genitals/testes for his age.

I lose my voice almost every day by the end of the day and if I don't, its very grumbly, gravelly - again, thyroid issue.

Does he complain of choking/coughing/feeling like something is stuck in his throat? Does he seem to have water "go down the wrong pipe" all the time?

The thyroid can grow up in the oral cavity area or down into the chest area below the collar bone. A good sonogram could shed some light on that.

Usually an ENT or Endo will do the surgery. The two usually work together if the ENT does it. You want someone who does A LOT of them. A doctor that takes out 5 - 8 thyroids a week is what you look for....the more the better his skill typically. Also ask around.

You have a lot of work to do. You need to be his advocate so study up. You'll have to take a crash course on thyroid 101. Read everything you can and ask questions.

No one here is a doctor but we've all been through the wringer.


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## Octavia (Aug 1, 2011)

I just want to echo nasdaqphil's thoughts about voice issues (mine were/are definitely thyroid-related) and choking/feeling like stuff goes down the wrong pipe more than it should.

I suspect an ultrasound and RAIU will be very telling for your son.

If he's had a tonsillectomy, the thyroid surgery could be a walk in the park. I've had both, and if what my parents tell me is accurate, I was in tons of pain after the thyroidectomy (I was so young I don't remember it). My worst problem after my first (of two) thyroid surgeries was nausea--not much pain at all! (No nausea for thyroid surgery #2 because they used a different anesthesia, and I honestly felt great after that one!)


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