# 12 year old with Hashi



## jen1970 (Jul 9, 2010)

I am desperately trying to help my 12 year old son. He was diagnosed with Hashimoto's/Hypothyroidism when he was 10 years old. The past two years have been a nightmare. He has been to 3 doctors. Levothyroxine has been increased 5 times. He is currently taking 100. His hypo symptoms are still present. It breaks my heart to see what this is doing to him. He has trouble focusing and concentrating on school work. He will forget the oral instructions for an assignment. Things were better the first year, but now I honesty think he is worse then when he first got diagnosed. We see an improvement when they increase his medication. He wakes up refreshed. Little things like making sure his shirt is tucked in before he leaves for school. He will get a burst of energy and you can tell he even walks faster. Then he returns to having a hard time waking up in the morning. Seems like a struggle to even half way tuck in his shirt. He will get in trouble at school if it isn't tucked in all the way. His TSH is normal, but I have read not to go by this. I demanded FREE T3 & FREE T4. The doctor didn't want to do this, but I insisted! They both came back on the very bottom of LOW/NORMAL. They added Cytomel once a day. He has increased energy in the day, but crashes in the evening. His lipid studies are so bad. See results and please give advise. Will the hypo symptoms keep returning?

TSH 1.58 0.34-4.82 uiu/ml 
Free T4 0.60 0.59-1.17 ng/dl 
Free T3 4.4 4.3-8.3 pg/ml 
Triglycerides 285 30-150 
HDL cholesterol 29 40-60


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## Lovlkn (Dec 20, 2009)

Based on these labs and ranges he is hypo - if he gets properly medcated life for him will get much better. Find a doctor who will dose based on the FT-4 and FT-3.


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## Phoenix (Mar 20, 2010)

Hi Jen,

I feel so bad for your son. Please give him a big :hugs: for me.

What type of doctor is he seeing? PCP or endo? I agree with Lovlkn, he needs a doctor that is going to look at those FT3 and FT4 numbers. Until they get the T3 higher, he is never going to feel better. Do be aware, that when he is taking a T3 med, the T4 numbers will naturally be surpressed.

I hope he is feeling better soon.

hugs2

Phoenix


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## Andros (Aug 26, 2009)

jen1970 said:


> I am desperately trying to help my 12 year old son. He was diagnosed with Hashimoto's/Hypothyroidism when he was 10 years old. The past two years have been a nightmare. He has been to 3 doctors. Levothyroxine has been increased 5 times. He is currently taking 100. His hypo symptoms are still present. It breaks my heart to see what this is doing to him. He has trouble focusing and concentrating on school work. He will forget the oral instructions for an assignment. Things were better the first year, but now I honesty think he is worse then when he first got diagnosed. We see an improvement when they increase his medication. He wakes up refreshed. Little things like making sure his shirt is tucked in before he leaves for school. He will get a burst of energy and you can tell he even walks faster. Then he returns to having a hard time waking up in the morning. Seems like a struggle to even half way tuck in his shirt. He will get in trouble at school if it isn't tucked in all the way. His TSH is normal, but I have read not to go by this. I demanded FREE T3 & FREE T4. The doctor didn't want to do this, but I insisted! They both came back on the very bottom of LOW/NORMAL. They added Cytomel once a day. He has increased energy in the day, but crashes in the evening. His lipid studies are so bad. See results and please give advise. Will the hypo symptoms keep returning?
> 
> TSH 1.58 0.34-4.82 uiu/ml
> Free T4 0.60 0.59-1.17 ng/dl
> ...


Yeah; your son is undermedicated for real. How much Cytomel was added? What time is the evening crash? How long has he been on the Cytomel and is he still on the 100 mcg. of Levothyroxine?

12 year old males can burn up the T3 just sitting still. So, this is going to be tricky. As you already know. I am sure glad you went to bat over the FREES!!


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## jen1970 (Jul 9, 2010)

Thank you for taking time to reply to my post. I greatly appreciate advise from people who know what he is dealing with. They started him on 5 mcg of cytomel. Didn't take long to see that the dose was too strong for him. He is taking 2.5 once a day. BIG improvement. He has more energy. Doctor approved the compounding request. The compounding pharmacist that makes the t3/t4 has Hypothyroidism and his wife also has it. I am thinking this is what he needs!! The t3 is an extended release. Which will help with the crash he gets in the afternoon. He will start back to school next month. I hope we get his levels under control, but I know the will keep changing as he grows. He is 5'7", 171 lbs and is 12 years old. My 14 year old son has Hashimoto's also, but his levels have been normal. Hyper symptoms years ago. (Mom has been doing a lot of research and putting the pieces of the puzzle together) He struggled in K & 1st grade and them slowly improved to a straight A student. The last few months I have noticed some hyp symptoms..... colder... at times lower stamina at baseball. He wasn't able to pitch as long as he had in the past. More strike-out up to bat on days he said he was tired. Took him to the doctor today. They are running labs. Think they will start him on thyroid med to stop the hashi attack. This is a new doctor. I will bring my younger son also. I told this doctor I needed a doctor who would work with me on what is best for my boys. He mentioned Armour. I asked about the reformulation and he hadn't heard. Told him I heard people who took the medicine for 30 years started having hypo symptoms with the reformulation. Can the hashi attack be stopped? What if he starts a hyper swing? I read about block and replace. I wish I could find a doctor who has years of exp with hashi. Two endos didn't help me at all. Waste of time. They told me to come in once a year.


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## Lovlkn (Dec 20, 2009)

Hi Jen,

I just wanted to comment about the Cytomel - it's powerful stuff and the body has to ease into it. When I first took it I quit after 6 weeks because even at tiny doses (2.5mcg) I was feeling anxious even though my FT-3 was still on very low range.

I tried it again a year ago and stuck out the anxious feelings by beginning on 2.5mcg split in 2 doses then increasing to 3/4 of a 5mcg then getting to a 5mcg pill over a period of 1-2 weeks. One thing I have noticed is I can have anxious feelings even if my lab's are in mid range so be sure to keep a log of how your son feels when taking it.

I am so sorry your kids both have to deal with this - as if being a teen wasn't hard enough.


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## Debbie from Milwaukee (Apr 18, 2010)

Jen:
You are dong a WONDERFUL job for both of your sons! All of the research and sticking to your guns with docs is hard, but it sounds like you are making progress.

Another thought comes to mind in communicating with the docs. I'm sure it is a good time to ask docs to monitor how increased testosterone with puberty affects each of your boys with the Hashi's. Also, I think it is excellent that you are having them take an extended release T3. I read recently in a thyroid book that TSH itself is somewhat needed to help convert T4 supplement to usable T3. When a person is taking ONLY T4 sypplement, the body sends less TSH to the thyroid, thus contributing to the T4 to T3 conversion problem. I'm sure this is only ONE of the many reasons that more and more people are discovering they have a conversion problem.

My own daughter has been diagnosed and treated with RAI for Grave's 3 years ago. Now she is dealing with depression and an eating disorder and possibly has Hashi's as well (although it is really hard to get all of the correct labs documented while she is in a psychiatric hospital). Two doctors have told her that she also has a T4 to T3 conversion problem. She is now on 120 mg. of Armour thyroid, but it is anyone's guess if this is the correct dosage for her (since her doc states that the TSH and free T4 are all the labs that he needs to run on her to adjust dosage).

It is my mission in life to encourage my daughter to educate herself on various aspects of her thyroid, her female hormones, and correct nutrient levels so she can better deal with all of her emotional issues. I hope you are able to help your two boys do the same so that they can take charge of their health issues as they mature into young men.


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## jen1970 (Jul 9, 2010)

We are still waiting on lab results for my son that has hypothyroidism/hashi. I asked the doctor to run all the antibodies since the other doctors didn't check them and only one checked TPO. He had his ultrasound yesterday and the tech said she saw one small sized cystic type nodule and several smaller ones. She said no mass was seen, but his thyroid was very rubbery and she also said strange sights suggestive of scar tissue. WHY didn't the other doctors do more testing? It seems like I am having to push for all the tests. Confused and upset. Two pedi endo were no help. I will insist on more in-depth testing. Other son is doing fine on his Armour.


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## Andros (Aug 26, 2009)

jen1970 said:


> We are still waiting on lab results for my son that has hypothyroidism/hashi. I asked the doctor to run all the antibodies since the other doctors didn't check them and only one checked TPO. He had his ultrasound yesterday and the tech said she saw one small sized cystic type nodule and several smaller ones. She said no mass was seen, but his thyroid was very rubbery and she also said strange sights suggestive of scar tissue. WHY didn't the other doctors do more testing? It seems like I am having to push for all the tests. Confused and upset. Two pedi endo were no help. I will insist on more in-depth testing. Other son is doing fine on his Armour.


Unbelievable! But you are pushing and you are getting results. It sure makes you lose faith in pediatrics. Our children are so precious and they deserve the best medical care available.

When you get those test results in, we sure will want to see them and the ranges when you have the time.

Good news about the other son! Is he #1 or #2 son?


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## jen1970 (Jul 9, 2010)

Oldest started Armour. Youngest has been on levo for over two years. I will post results when I get them next week. I am worried sick about the ultrasound. Are small cysts and nodules common in hashi? I had them run ALL kinds of labs. Just about all the vitamins. I had a long list. The other doctors should have done all of this. Parents really have to push and it shouldn't be like that. They should want to run tests when a child is dx with a disease.


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## Andros (Aug 26, 2009)

jen1970 said:


> Oldest started Armour. Youngest has been on levo for over two years. I will post results when I get them next week. I am worried sick about the ultrasound. Are small cysts and nodules common in hashi? I had them run ALL kinds of labs. Just about all the vitamins. I had a long list. The other doctors should have done all of this. Parents really have to push and it shouldn't be like that. They should want to run tests when a child is dx with a disease.


They are common w/Hashi's but in a child? That is a very early presentation; that is my thinking and therefore I would not think that common.

What is your thinking on that?


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## jen1970 (Jul 9, 2010)

I am still learning about all of this. I'm not sure how common it is in children. What kind of doctor do I need for the FNA? This needs to be done!!!


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## Debbie from Milwaukee (Apr 18, 2010)

I am so sorry that you and your son are going through this. You are correct, ped. endo docs SHOULD be on top of this type of thing. If my daughter has Hashi's, as her most recent thyroid doc suspected, then this is something the ped. endo should have tested for her, also. I also found out that an uptake scan should have been part of the diagnostic testing as well, but it never happened.

I certainly understand the priority of getting a FNA. I would think that either a pediatric endo specialist or a ped. surgeon could do it. I also do not know the incidence of nodules in children. Some of the other forum members who have had a FNA may chime in on this.

Continue to get support for yourself as well as your son. I know how hard it can be when docs either miss important medical things or it feels like you are coming up with all of the ideas. Sounds like right now is a scary time because of the uncertainty of the tests. My thoughts and prayers go with you and your son now.


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## jen1970 (Jul 9, 2010)

The doctors office called with results today. They are still waiting on the ultrasound. The new doctor is changing his medicine to Armour 90.

TSH 0.370 0.300-5.000
Free T3 3.7 2.5-3.9
Free T4 6.5 4.0-12.0
RT3 34 H 11-32
TG ABS <20 <20 1st time to be tested
TPO 12 <35 down from when he was first dx Hypo (TPO 36 0-6 TSH was 38)
Ferritin 29.4 He said this needs to come up. Will start iron pill
Vit D 25.4 32-100 Will start extra Vit D

BIG improvement in the Free's since his last doctor added the Cytomel last month. The new doctor likes Armour better. I do wonder about the RT3.


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## Andros (Aug 26, 2009)

jen1970 said:


> The doctors office called with results today. They are still waiting on the ultrasound. The new doctor is changing his medicine to Armour 90.
> 
> TSH 0.370 0.300-5.000
> Free T3 3.7 2.5-3.9
> ...


I wonder also. Here is some info which may prove to be helpful.

http://www.jci.org/articles/view/107795/files/pdf

http://thyroid-rt3.com/whatis.htm

If your son has not had a radioactive uptake scan, I certainly recommend one.


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## jen1970 (Jul 9, 2010)

I am checking on the uptake scan next. We are still waiting on the results from the ultrasound. The doctor is hoping the Armour will bring the RT3 down. My other son had a high normal RT3 before he started his Armour a few weeks ago. He wasn't on any medicine. I will read the info you sent. Thank you. What would the uptake scan show?


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