11 year old boy has TSH levels done that came back 800?

[danaravae]

My 11 year old son was just diagnosed with hypothyoid problems, His level were 800 my family Doctor said he has never seen any at that high as well as a Specialist in Denver. They put him on synthroid to start trying to regulate it. I started noticeing that he was gaining a lot of weight and that he looks really puffy about 1.5 yr. ago, what kind of damage have I caused him for waiting so long? I just thought he was growing, but his little face looks very puffy. He had open heart surgery in May of 1998 when he was just 3 months old. I really didn't get the impression that my Doctor was too concerned? but by talking with others they say that is competley unreal!! any advice?? please help me.

[nikkiwebby]

my sister's 14 y-old nephew had an enlarged thyroid and had been taking meds for only 2 weeks...he was having trouble breathing but the doctors told his father he could wait for his surgery in July and it wasn't serious..to relax!  He was given an appt when called last Friday but they couldn't get him in until 4 days later for check-up as his father was worried...Saturday, the next morning his father found him dead on the kitchen floor and the autopsy revealed he died from sufocation due to his enlarged thyroid (10x normal size) !!!!  Guess who won't be making his check-up;(  Don't always believe the doctors..your child's life may very well depend on your persistance!!!

[hope4thegoodstuff]

I understand about small town dr's or being out in the country and not close to anything.  I went to one dr 20 miles to the east, another dr to the north 40 miles and another in that same area before I found a dr that would talk to me about my thyroid.  When I found the dr that wanted to talk to me, I didn't want to talk to him.  I went to him for a UTI.  But it's a good thing I did.  I don't even have a thyroid now.  I was in some serious trouble and I actually didn't feel that bad.  Go to any town that has a clinic.  Take your son and tell them you want an MRI done.  It does not have to be a dr you know, it does have to be a dr that will listen.  

[danaravae]

Just got a call back...AND of course he is not in today! UGH!! I did tell them I need a call back tomorrow first thing to discuss my sons condition that I feel it is very crucial for a returned call!!

I was visiting with my family yesterday which some of them I haven't seen since Christmas, others only for a couple of weeks and they ALL made a comment on Dylan. We got to visiting and it just came and really hit me that he has grown another size in jeans in another month! He started out in a 12, went to a 16 and now is in a 29 waist! and he had to lay on the bed for me to get them fastened for him, and I am not quite sure how he wore them all day!! You can not tell me that is normal!! and the poor little guy hasn't gotten ANY taller :( I am at my edge with these Doctors! IF I don't get any response tomorrow with action I will load him up in the car and find someone else!!!!!

A VERY WORRIED MOM!!!

[mtkst13]

any luck getting a sooner appointment?

[danaravae]

OMG!!! my thoughts are so with you!! I totally understand your scare! Basically this happend to us when he was born. They told me that he had a large hole in his heart that would eventually need repaired, but wanted to wait as long as they could. We were flown flight for life at least 3 different times. He was in the ICU for a day or so and his oxygen levels would level out and the Doctors would say it was a virus? I knew better but of course went home each time with different directions, movies on CPR and monitors that would go off screaming in the middle of night as we would rush to him thinking he was in cardiac arrest only to find he had kicked the lead off. SCAREY!! One day in March of 1998 he looked so puffy, his face was like a ballon, I took him into my health nurse to have him weighed and I pointed out that he looked very swollen, the nurse looked me right in the face and said "you have him dressed to warm, just go home and take some clothes off of him" I left so mad!! then later was saw in the grocery store and ran into a nurse. She immediatley told me he looked as if he has a MOON FACE! I was like what does that mean? she said you need to take him in right away. I ended up going to the ER and demanded for someone to look at him. the Doctor arrived did a blood gas on him and his oxygen was 62% so we were flown to Denver to meet with his Cardiologist. I told him I am not leaving without answers and I said My baby is dyeing in front of me and no one is listening! It ended up that he scheduled open heart surgery within the next week. Come to find out that he was so lucky he didn't have a stroke or DIE! his blood was switching directions and going thru that hole backwords!!! I KNEW!! there was something!!

He is such a good boy, so happy and loving. It breaks my heart that he is so heavy! he hasn't grown either so he is as heavy as he is tall. All the kids make fun of him, in fact last week we got a call that he choked a kid at school for him continuously calling him fat! that is not his demeaner! It hurts him bad.

We went walking the other day and walked 2 miles...he couldn't keep up, his face was flushed and he was exhausted! I just want him better. His personality is still very happy, like right now he is outside with his brother playing. You know when he is tired, he comes right in and lays down!

Thank you for listening to me! and I wish you the very best with your family!!! what a horrible thing to go thru. I am so happy she is doing well!!

Blessing to you and your family:)

[redheadaussie]

Hey, I just want to offer my comfort as a mother to another mother. I had HUGE problems in getting my daughter (now 21) diagnosed, not with a thyroid disorder but a rare Cystic Hygroma. Unheard of in a 12 year old, but she had one!  
  She was diagnosed with chronic asthma as a 4 year old, then it got worse. I noticed the large lump in her neck, and mentioned it to doctors. They told me it was 'puppy fat' She is a lot smaller than most children, and was teased and bullied mercilessly for the 'egg in her throat' by other children, yet the doctors would never believe it.
  Finally one day I noticed as she swallowed a drink, the lump didn't move. I knew then it was not podgy puberty fat, but something not right. I took her immediately to the doctor and said, (not in her earshot of course!) "If you don't send me to a specialist I will sue you for medical negligence"
  Within one week, I saw a specialist, who took an ultrasound, and it was discovered a grapefruit sized cystic hygroma was choking her to death. Had it not been treated within 3 weeks she would have died.
  My point is; DO NOT be afraid to get angry at the doctors. This is your baby we are talking about!!!! Take him to a different doctor, take him to 5 in one day..(of course give you son a special treat for being such a good boy to put up with all these different doctors!)
  Everyone can tell you to fire the endo, see a different doctor etc etc..but the heart of the matter is; YOU have not done anything wrong..you are concerned for your child and you don't know what is the right course of action.  The right course of action is to pretend he is trapped under a car in an accident...that's what I did..and man! I was totally surprised how assertive I became...and I am glad I did!
  Sometimes doctors don't see cases like ours...(my daughter made medical history in Australia, only ever seen in newborn babies..she was 12 years old...) and they will only treat what they know.
  Put together your son's medical records and make copies...keep kicking butts till you get him treated correctly.
God bless!

[danaravae]

All of his other blood work came back ok is what his Doctor said all numbers such as sugar levels, heart, liver and kidney functions were good. He just mentioned that the T3 and T4 were low. He ran a complete blood test on him, so maybe with all that coming back ok he isn't worried. As for myself I am.

I know that you are not trying to scare me, you are just trying to help and I am very grateful for you advice! thank you for your post!! At least I feel like I have support here and people are willing to help me with my concerns :)

Thanks!

[Smilerdeb]

Wooooooooooooooh!
I would be really taking your Son to a Hospital Emergency Section as a childs life is so precious and if his TSH is 800 then he is at risk of all organs shutting down and possibly Myexedema Coma.
The first sign of kidneys shutting down is water retention and puffiness.
Sorry but if he was my child, I would DEMAND action now.
I am not trying to scare you but at least you will know for sure what is going on.
Hes already been through enough with heart surgery.....get him checked today!
As for the Endo....fire him.

[danaravae]

Thank you for your advice! I am planning on first thing Monday calling and getting this looked into further!! My parents were out just visiting today and they hadn't seen him in a couple of weeks and they were very concerned! they thought he looked more puffy than the last time they saw him. I guess I am just used to that? it made me a little more nervous, but very thankful that they gave me their output.

Both of my parents are Diabetic, Dad being more severe than my Mom. Also both grandparents also had Diabetes as well. On my Dad's side they just alot of heart issues which this poor little guy has already been thru a major surgery to repair a large hole. This is all he needs :o(

I first took him about a year or year and a half ago to see about his blood sugars. I did use my parents machine and did a fasting and it was 117, when I took him into the Doctor they checked it there and it was in the 90's after school...they also did a urine test which came back ok as well. So I again left out of sorts because I thought I have maybe found something that could explain all of this weight gain. She sent me out the door saying he was fine. Asked me about his diet and we were on our way! FRUSTRATING!! to say the least!!

Everyone needs to understand that I am from a small community and I don't have really any other choices for our family Doctor. The nearest big city to us is Denver which is a good 3 hrs. away. My Doctor is young and very knowlegable, but I am just worried that they are being a bit laxed? I went thru this whole dilema when he was a baby. I fought tooth and nail for us to get into the Cardiologist because I knew there was something wrong...AND there was! I am going with my heart and getting this done ASAP !

Thank you again for all your help!! you all have been so kind!!!

[Super_sally888]

Hi,

However, with the TSH so high he needs the thyroid hormone.  As he is taking t4 If he forgets first thing in the morning he can take it later in the day (just put it in between meals), or he can take it the next day (double dose).  Yes, he needs to be retested again in 4 weeks and his meds increased again (testing should also be FT3 and FT4 - which should guide therapy just as much as TSH - particularly if thyroid is involved).

I don't think it's true that thyroid treatment will cause him to go through puberty early.  That is wrong.  You'd have babies on thyroid treatment going through puberty if this were the case.  He needs proper hormone levels to go through puberty and develop properly regardless.

He needs to see the pediatric endo asap because if pituitary is involved it can have a lot of other systems being affected... and he would need hormone replacement, and possibly cortisol.  

Has his blood sugar been tested?  HA1C as well as fasting and post eating blood sugars.  That is something to get done immediately too.

Make a lot of noise.  Change doctor's if need to.  

Assuming this problem only developed over the last 18 months or so, I would think that with proper treatment some / most of the problems could be reversed (your poor son can get his life back).  But time is the essence and he shouldn't be waiting to be checked properly.  

[danaravae]

Ok! I will do that 1 st thing Monday Morning! No one called me back today either!  I will not accept anything other than the test to be ordered. I will let you know.

I am so grateful I found this site to answer my questions! thank you so much for all your help and TIME!!

Blessings!!

[stella5349]

I really don't believe this is a thyroid disorder - I think it may be more around a pitutiary issue.

Don't let this office keep blowing smoke. It takes but a half an hour - after a script is written  - to get the MRI and know for sure.

[stella5349]

One more piece I'd like to add.

Don't put to much faith in this doctors office anymore.....................

Find someone to oder the MRI now!

[danaravae]

Hello!
I have called to my office yesterday all day and today and haven't heard back from them? they must not be too worried about him or they would of returned my calls? I googled pediatric pitutiary disorders and most of the symptoms such as swelling of the body, face, lips, weight gain fits? I am still very confused to what this will do to him, I was going to get more information from them when they return my call, IF they do! Thank you for all your help if you have any more you can pass along to me I would be so greatful!!

Thanks :o)

[stella5349]

Google search "pediatric pitutiary disorders"

[stella5349]

Push them forward on pitutiary testing immediately. I know that is where I would be looking first.

He has to be seen on this issue first before everyone chalks this up directly to hypothyroidism. If he has any tumor issues going on there, Synthroid is not treatment for that.

That's just my thoughts, but I wouldn't take NO for an answer here at all!!!

I'd call the GP and just say to them, "Schedule an MRI for my son today."  "I want his pitutiary checked immediately!" They can't say no, but if you do not get him in right away, then I would take a trip to the ER and make them do it.

[danaravae]

He just started over the last weekend. So not too long. He started him at 50mcg and want's to test him in 4 weeks to alter it. He said he wanted to build him up slower so that it doesn't put his system into shock with the over loading of Synthroid. I will check into other options like you mentioned!

Thank you!!

[mtkst13]

i'm sorry to hear that things are moving so slowly.  i'm shocked.  when did he start taking synthroid?  what's his dose?  are you going to a pediatric endocrinologist?  

if the endocrinologist doesn't get you in sooner, keep the appointment but call all of the other endocrinologists in your area.  maybe someone can get you in sooner.  

poor little guy.  

[danaravae]

Thank you for your comments. I am a little disgusted that he would have to wait that long when his levels came back the way they did. I did call my Family Doctor and he said that July would be fine that there shouldn't be any problem with waiting until then?? I called to ask him to get  him sooner, but again was told that July was fine. He did go over that with him being on this medicine that he could go thru puberty earlier which is not good because he said that he growth plates would seal and he would not grow any taller than he is which is on 4ft.5in.

I also take synthroid, so I am making it a habbit to take first thing in the morning when I take mine. He did forget yesterday so he skipped taking it all. We actually aren't even supposed to go in for a check up for another 4-6 weeks.

I really feel a bit overwhelmed by the reaction of his Doctor. I am hearing two different sides. My gut feeling is to get him in sooner as well, so after I get off here I am going to put another call into his Doctor and MAKE them find another EARLIER appointment! As a mother we all know to trust our intincts and I feel like there is just something not right!! My son is misrable!

Thank you so much!!!

[mtkst13]

the endocrinologist needs to see him sooner.  july is way too long.  if calling doesn't work, get your primary care doctor to get him in sooner.  and if that doesn't work, call another pediatric endocrinologist.  do not wait.  beg and get mad if necessary.

also, he needs to take the medicine first thing in the morning, and he has to wait for one half hour (at least) to eat anything so that the synthroid can be absorbed.  otherwise, the medicine will not be effective.

taking the medicine properly and getting into an endocrinologist soon are big priorities.

having hypothyroidism in an adult is awful...it slows all bodily functions, makes you tired and swollen, and lowers your respiratory and heart rates to possibly dangerous levels.  in a child it does the same things, but unfortunately to a worst extent.  children are  supposed to be going through growth spurts and puberty, and cognitively children are going through changes and their brains are maturing.  hypothyroidism really impacts and interferes with these processes.  that's why he needs to be seen asap.  

[danaravae]

Can you tell me what a High level such as his does to your body? he has gained probably 50-55 lbs in the last year, his little body looks very puffy? His lips are even huge and puffy?? I have been reading on the internet, but of course everything pertains to adults not young children. You are all very helpful and I can't thank you enough for taking your time to help with my questions!!! I am just very unaware if the diagnosis is different since he is so young. I myself along with husband both have thyroid, nothing such as this, I guess it just isn't a huge concern with us because of the results. They put us on medicine and I know to take it every day, but this is going to be very hard for him being 11 years old to have to be on Medicine the rest of his life!! He also hasn't grown if any in the past year or more, will he start to grow now? he told me yesterday he was the shortest in his class and "fattest" and he is the oldest! it breaks my heart, he gets teased at school by other kids and it really hurts his feelings! this whole thing has really been something! I just want him to get better!! :o) Thank you all!

[stella5349]

Don't wait til July.

[stella5349]

Get his pitutiary checked with an MRI

[danaravae]

Thank you for your out put. I don't have the exact numbers of everything else, but my family Doctor said that the T3 and T4 levels were low? He went over everything so fast...I feel a bit under knowleged about this. They did not recommend the ultra sound, and the Doctor that he refered us to is a specialist in Endocrinology and we don't get in to that appointment until July. Thank you very much for taking your time to help me with my question!