VERY short child - possible thyroid issues & HGH shots

[Vintage81]

My daughter is very short for her age - she’s always been under the 5th percentile on the growth chart. 

 

In November 2015 she saw an endocrinologist for the first time. They did blood work and took an X-ray of her hand (bone age). Blood work was all normal and bone age was a little behind (bone age=6years 10months, actual age=7years 6months). Endo said nothing needed to be done at this time and to come back in a year for follow-up.

 

November 2016 only a bone age X-ray was done, with similar results as last year. But, she deviated from her growth curve and is now at 0% on the growth chart. Endo ordered further testing - growth hormone stimulation test and further blood work.  

 

We just had the growth hormone stim test done and she is not growth hormone deficient. Based on that, the endo diagnosed her as idiopathic short stature (which just means she’s really short and they don’t know why). She may qualify for HGH shots with the insurance company, but we’re not certain on that yet.

 

Blood work showed abnormality with thyroid - TSH was high, 5.6, total T4 normal, T3 uptake(?) normal. Free T3 and free T4 were not tested. Everything else was normal. Endo wants to do blood work in a month to retest the thyroid. (My husband has Hashimoto’s, so it wouldn’t surprise me if my daughter had thyroid issues too.) 

 

For now, we're putting the brakes on the HGH shots until the next blood test is done. In the meantime, I’m trying to gather as much information as possible.

 

Does anyone have any experience with thyroid issues in children? If so, did the thyroid issue affect their growth? Once the thyroid was under control, did they grow at a more normal rate?

 

 

I’m also curious about HGH shots. If anyone has any experience with them, I’d love any information you have. Do they hurt? Are you seeing results? Is it difficult to keep up with? Do you feel like it's worth it?

 

 

 

[wonderchica]

I haven't had a child do HGH shots myself, but have known people who have. They gave them at home daily. It was a little pinch like any other shot- similar to a flu shot I'd guess. This child was very young and of course they cried for a minute, but it became a routine thing so it wasn't a huge deal. They just gave it regularly like any medication. I'm not sure how much the child grew as we lost touch, but they were growth hormone deficient so I imagine it helped.

[CadenceSophia]

Oh no that TSH is WAY too high :( she needs actual scans of the thyroid and pituitary. My friend's daughter went through this and it turned out she was missing part of her pituitary. They did elect to do HgH shots so her daughter would one day be tall enough to drive and all went pretty well with that.

[umsami]

A good friend who is very short found out about a pituitary tumor in her 20s, after years of infertility.  I'd want to rule out something along those lines as well.  How tall are you and your husband?  Any siblings to compare her to?

[Vintage81]

Oh no that TSH is WAY too high :( she needs actual scans of the thyroid and pituitary. My friend's daughter went through this and it turned out she was missing part of her pituitary. They did elect to do HgH shots so her daughter would one day be tall enough to drive and all went pretty well with that.

That's good to hear that the HGH shots went well. I've never met anyone who's done them, so they kind of make me nervous.

 

Beyond blood tests, I'm not sure what else they're going to do. They told us if she'd failed the growth hormone stim test, she'd be retested and also have an MRI to check the pituitary gland. But since she passed the test, it doesn't look like that's going to happen. But it's definitely a question for us to ask.

[Vintage81]

A good friend who is very short found out about a pituitary tumor in her 20s, after years of infertility. I'd want to rule out something along those lines as well. How tall are you and your husband? Any siblings to compare her to?

I'm 5'1" and my husband is 6'. Her and her sister are just about the same height now.

 

They're projecting her to be about 4'10", based off of the bone age x-rays. She obviously gets the short genes from me, but my husband is the one with thyroid issues. It's almost as if she's got a combination of both. ðŸ™

Edited January 18, 2017 by Vintage81

[itsheresomewhere]

This is a ped endo she is seeing, correct?  

[Vintage81]

This is a ped endo she is seeing, correct?

 

Correct

[SparklyUnicorn]

Huh, I don't know.  I'm very short and was always off the chart short growing up (of course).  Nobody ever tested anything.

 

 

[Ali in OR]

I'm probably not much help, but more data anyway. My disabled dd's brain didn't quite divided correctly with some structures along midline messed up. She's been tracked by an endocrinologist forever and one of her diagnoses is hypopituitarism (hypo=low). The three things the endo seemed to be tracking were thyroid, growth, and whether she'd go through puberty without medical involvement. She's been on thyroid forever but her bloodwork was never worse than low normal; it's just that thyroid is so important to development that they didn't want to risk it. She is probably growth hormone deficient (maybe about 4'9" or 4'10" now at full height) but we were never interested in treating it since she's non-ambulatory and we have to carry her. Small is good. She was late to puberty but did manage to go through it on her own with no help. I think in the grand scheme of things she may have mildly low function of the pituitary but nothing too bad. Could have been a lot worse.

[HomeAgain]

What is the harm in not doing the shots?

 

I was a very short child.  Correction, I was a very small child.  My grade often corresponded with my clothing size after 3rd.  I am now a decent sized adult.  I am small, but within the range of normal and healthy.  When I was a child they explored the possibility of growth hormones, breaking my bones to insert rods, pediasure type drinks...but honestly I was just right for who I was.  My parents opted not to do any growth treatments and I was just fine.

[SparklyUnicorn]

What is the harm in not doing the shots?

 

I was a very short child.  Correction, I was a very small child.  My grade often corresponded with my clothing size after 3rd.  I am now a decent sized adult.  I am small, but within the range of normal and healthy.  When I was a child they explored the possibility of growth hormones, breaking my bones to insert rods, pediasure type drinks...but honestly I was just right for who I was.  My parents opted not to do any growth treatments and I was just fine.

 

Yeah barring compelling reasons that doing nothing would be harmful to my child, I would not agree to any of those measures. 

 

I'd do a much bigger "hmmm" if nobody in the family was short.  Mom is short.  You might say well but the kid is projected to be shorter.  I was shorter than both my parents too.  I do have a grandmother who is 4 ft 10.  She is now in her late 80s. 

[sangtarah]

My oldest dd is a slow grower and was found to have hypothyroidism at 5. They did a bone x-ray at 7 and found her to be 2 years behind, but did not recommend any treatment like HGH. (We discussed it, though.) Now at 10 she is finally reaching the same-size clothing as her age, though on the very slender side. Her ped endo is pleased with her growth curve - it's normal for her, though still a couple of years behind her peers. With her thyroid properly treated, her endo dr's have always felt she will reach whatever adult hieght she's meant to get to - they estimate it at 5'3 currently.

 

Younger dd was also diagnosed with hypothyroidism this past year - age 7. She has had a normal growth pattern (in the past the two have been assumed twins). They suspected her thyroid issue when they felt it enlarged during a routine exam.

 

My dh's family runs strong with hypothyroidism. He has it, his mother has it, his grandmother had it, and his sister has it. My dh is 5'10, but all the women are/were much shorter.

[gingersmom]

My daughter had 2 friends who did the shots.

 

Both were around 5'4.

 

Neither one seemed to have any issues doing the shots.

[QueenCat]

Huh, I don't know.  I'm very short and was always off the chart short growing up (of course).  Nobody ever tested anything.

 

Testing usually comes in if you either stop growing, or slow down to the point that you aren't following your own growth curve.

[Spryte]

I would want the thyroid tests run. The height projection doesn't alarm me though.

 

I'd follow the endo's advice on the shots, and maybe get a second opinion. What are the pros and cons?

 

Maybe I'm biased? I'm 4' 10". Women in my family are small, I'm okay with that. My parents did have the option of shots when I was growing up, but opted not to go that route. They did, however, do a lot of self esteem building that I didn't notice or appreciate till much later. That was very sweet. And they put me in a lot of sports that I now realize small girls seem to do, ha! Gymnastics and horsebackriding.

 

I had excellent health care, and annual visits to a very large children's hospital for cardiology among other things. I think if there were anything major, it would have been caught. So, yeh, I'm just short. No harm done. :)

Edited January 18, 2017 by Spryte

[QueenCat]

What is the harm in not doing the shots?

 

 

 

If you are actually growth hormone deficient and you don't do the shots, you are very likely to develop brittle bone disease by the time you are a young adult.

[Carrie12345]

Not having a crystal ball definitely sucks.  And, with adding thyroid issues, that's way different than our family's experiences.

 

I'll still share that dh was a short kid, and his parents went through the whole testing thing and shot debate when he was about... maybe 12-ish?  They didn't wind up doing the shots, and he hit his growth spurt at the end of his teens, and has the stretch marks to prove it.  He's about 5'10".  Probably closer to 5'9", but don't tell him that.

 

My daughters are just 13 months apart, but looked several years apart, by size, from 4-ish to 11-ish.  Had I not known dh's history, I probably would have been concerned.  But now they're 13 and 14, and the gap has been closing quickly.

[SparklyUnicorn]

Although I have moments where being taller would be better.  That is for sure.

 

Like today.  I can't sit comfortably in the damn chair in my class and it's not adjustable.  I'm thinking of bringing something to sit on, but that'll be kind of embarrassing.  But then I'm old so I'm supposed to be embarrassing anyway.  LOL

 

 

[SKL]

I haven't known anyone IRL who had growth hormone shots, but a petite girl of a homeschool family I followed on the web did.  It did help her to grow, but they quit after a while because it wasn't very fun to do daily shots.  She was happy with where it got her.  I do realize this isn't reliable advice.  :P

 

I have a short kid.  Both of her birth parents are short, so I think she's just genetically short, which is OK for us.  I think she will be fine if she ends up 4'10, though a little taller would be better.  :)  I don't plan on looking into any interventions.

[Junie]

I am in the middle of similar testing with two of my daughters.  They (and I) have Noonan Syndrome, a genetic birth defect.  Short stature is one of the most common symptoms.

 

We just did their bone age x-rays and bloodwork a week or so ago.  Most of the bloodwork was normal.  One thing was a little bit low.  Sorry, I don't remember what it was.  I believe the girls were both two years behind in growth age.

 

We will be seeing a pediatric endo soon to discuss options.

 

Since they were not low in growth hormone, I don't know that we want to do the daily shots.  I don't even know if they would help, since they are already getting "enough" and they still aren't growing.

 

No advice, really, but hugs of solidarity.

[Ravin]

 

My daughter is very short for her age - she’s always been under the 5th percentile on the growth chart.

 

In November 2015 she saw an endocrinologist for the first time. They did blood work and took an X-ray of her hand (bone age). Blood work was all normal and bone age was a little behind (bone age=6years 10months, actual age=7years 6months). Endo said nothing needed to be done at this time and to come back in a year for follow-up.

 

November 2016 only a bone age X-ray was done, with similar results as last year. But, she deviated from her growth curve and is now at 0% on the growth chart. Endo ordered further testing - growth hormone stimulation test and further blood work.

 

We just had the growth hormone stim test done and she is not growth hormone deficient. Based on that, the endo diagnosed her as idiopathic short stature (which just means she’s really short and they don’t know why). She may qualify for HGH shots with the insurance company, but we’re not certain on that yet.

 

Blood work showed abnormality with thyroid - TSH was high, 5.6, total T4 normal, T3 uptake(?) normal. Free T3 and free T4 were not tested. Everything else was normal. Endo wants to do blood work in a month to retest the thyroid. (My husband has Hashimoto’s, so it wouldn’t surprise me if my daughter had thyroid issues too.)

 

For now, we're putting the brakes on the HGH shots until the next blood test is done. In the meantime, I’m trying to gather as much information as possible.

 

Does anyone have any experience with thyroid issues in children? If so, did the thyroid issue affect their growth? Once the thyroid was under control, did they grow at a more normal rate?

 

I’m also curious about HGH shots. If anyone has any experience with them, I’d love any information you have. Do they hurt? Are you seeing results? Is it difficult to keep up with? Do you feel like it's worth it?

Thyroid issues run in my family. I was diagnosed as hypothyroid at age 11. I grew something like six or seven inches in a year following start on synthroid. Part of that was the normal early puberty growth spurt, but I had plateaued for a while until then.

 

I wouldn't get growth hormone shots until the thyroid issues are addressed. Or possibly at all if there are no health issues other than size.

[gardenmom5]

I've a friend whose son gets hgh.  he was growing, and producing hgh - BUT NOT ADEQUATELY.  she had to push and push to get him treated.

how is her level of hgh in the *optimum* range for hgh?  (if it's good - I'd look for another cause.)

 

has her pituitary been checked?

 

I will tell you - experienced thyroid patients tend to hate endos.  (typical - patients gives long list of symptoms - endo: you're fine.)

for thyroid:

free t3

free t4

reverse t3

 

those are *the most important* numbers.  tsh is a pituitary hormone - NOT a thyroid hormone.

"normal range" . . . includes people with deficient numbers.  the only range you should be looking at to compare her numbers is *optimum*.

 

[Vintage81]

What is the harm in not doing the shots?

 

I was a very short child.  Correction, I was a very small child.  My grade often corresponded with my clothing size after 3rd.  I am now a decent sized adult.  I am small, but within the range of normal and healthy.  When I was a child they explored the possibility of growth hormones, breaking my bones to insert rods, pediasure type drinks...but honestly I was just right for who I was.  My parents opted not to do any growth treatments and I was just fine.

 

 

Assuming she's healthy, I don't think there's any harm in not doing the shots. She'll just be a short adult (which is not necessarily a bad thing).

 

We've tried to keep an open conversation with her about her height. We've always known she'd be small, but we didn't know to what extent. Her sister is now the same height as her and I get asked all the time if they are twins. She doesn't seem bothered by it, but I have no clue how it'll affect her as she gets older. 

[JumpyTheFrog]

Please address the thyroid before trying anything more invasive.

 

Also, I believe there is someone on this forum whose child was super small until they took him or her off gluten just to see if it would help. The child shot up in height in such an obvious way that there was no doubt that gluten had been an undiagnosed problem.

Edited January 18, 2017 by HoppyTheToad

[Vintage81]

I would want the thyroid tests run. The height projection doesn't alarm me though.

 

I'd follow the endo's advice on the shots, and maybe get a second opinion. What are the pros and cons?

 

Maybe I'm biased? I'm 4' 10". Women in my family are small, I'm okay with that. My parents did have the option of shots when I was growing up, but opted not to go that route. They did, however, do a lot of self esteem building that I didn't notice or appreciate till much later. That was very sweet. And they put me in a lot of sports that I now realize small girls seem to do, ha! Gymnastics and horsebackriding.

 

I had excellent health care, and annual visits to a very large children's hospital for cardiology among other things. I think if there were anything major, it would have been caught. So, yeh, I'm just short. No harm done. :)

 

 

Was there anything specific your parents did, that you look back on as really helpful? We're always trying to be encouraging to her and explain that no matter what height she is, she can be successful. 

 

We have her in gymnastics right now and she loves it. Since she's homeschooled, she's not around a ton of other kids, so she's kind of sheltered. I worry about bullying and that sort of thing. I know that's not a good reason to do invasive shots, and it's definitely not a deciding factor, but it's still something I worry about.

[Vintage81]

Not having a crystal ball definitely sucks.  And, with adding thyroid issues, that's way different than our family's experiences.

 

I'll still share that dh was a short kid, and his parents went through the whole testing thing and shot debate when he was about... maybe 12-ish?  They didn't wind up doing the shots, and he hit his growth spurt at the end of his teens, and has the stretch marks to prove it.  He's about 5'10".  Probably closer to 5'9", but don't tell him that.

 

My daughters are just 13 months apart, but looked several years apart, by size, from 4-ish to 11-ish.  Had I not known dh's history, I probably would have been concerned.  But now they're 13 and 14, and the gap has been closing quickly.

 

 

I would most definitely love a crystal ball!!

 

My DH (and his sister) both hit their growth spurts late, so that is something for us to consider. 

[Soror]

Your endo sucks, the TSH is already out of bound even by the highest parameters used now. She needs Free T3 and Free T4 tests run at a min and with a father with Hashimotos she needs antibody levels run. I'd go far, far away from that endo. 

[Vintage81]

Thyroid issues run in my family. I was diagnosed as hypothyroid at age 11. I grew something like six or seven inches in a year following start on synthroid. Part of that was the normal early puberty growth spurt, but I had plateaued for a while until then.

 

I wouldn't get growth hormone shots until the thyroid issues are addressed. Or possibly at all if there are no health issues other than size.

 

 

Thank you for that info. My DH is pretty convinced she has a thyroid issue, since he has Hashimoto's. His mother also has hypothyroidism, his sister has lupus, and many other family members have celiac. Needless to say, this stuff runs in the family, so we're definitely waiting on the shots until we have more clarification on her thyroid.

[Soror]

Kids being on the shorter end just because of genetics don't bother me a bit, I have some short kids myself and with the genetics in my family they could end up tall or short. But the TSH alone indicates that this is not just a short kid problem, perhaps it is separate but I wouldn't deny my kid treatment for any other medical problem, I surely wouldn't for thyroid issues either, it can cause all sorts of issues, including massive fertility problems and mental health issues. It isn't just about height.

 

fwiw we've had my shortest kid test for thyroid issues b/c of genetics(I have Hashi's and dh's mom & sister both do), so far so good but it is certainly something for me to kee an eye on 

Edited January 18, 2017 by soror

[Pawz4me]

I'm very short -- 4'10" on a good day with shoes on. It's never really bothered me, although the "chairs are too big" thing that Sparkly mentioned certainly is irritating, as is having to have almost everything hemmed. But at least I don't ever have to worry about having enough leg room. ;) I was never tested for anything (that I know of) as a child, although back then I'm not sure how much could be tested for. DS21 is also short--somewhere around 5'4" or 5'5." He was always around the 5th percentile for height. DH is about 5'10" or 11" so in theory DS should have been around 5'7" or 8" (which is about where his younger brother has ended up). His pediatrician did bring up the subject of growth hormone injections when DS was around 12 or so but DS wasn't interested so we didn't pursue it.

 

ETA: I'd definitely follow up on the thyroid/pituitary stuff. I agree with the others that her TSH is high.

Edited January 18, 2017 by Pawz4me

[Vintage81]

I've a friend whose son gets hgh.  he was growing, and producing hgh - BUT NOT ADEQUATELY.  she had to push and push to get him treated.

how is her level of hgh in the *optimum* range for hgh?  (if it's good - I'd look for another cause.)

 

has her pituitary been checked?

 

I will tell you - experienced thyroid patients tend to hate endos.  (typical - patients gives long list of symptoms - endo: you're fine.)

for thyroid:

free t3

free t4

reverse t3

 

those are *the most important* numbers.  tsh is a pituitary hormone - NOT a thyroid hormone.

"normal range" . . . includes people with deficient numbers.  the only range you should be looking at to compare her numbers is *optimum*.

 

 

During the growth hormone stim test, they were looking for her level to go above 10...hers went to 11, so she's definitely producing enough growth hormone.

 

My husband's Hashimoto's diagnosis is fairly recent, about a year ago, but he already hates his endo. Its exactly as you described. For instance, he has a lot of pain in his hands and his knees. During his last appointment, he told the endo about the pain, and the doctor laughed at him. He said he couldn't help DH with the pain and that he needed to see a hand doctor. DH also follows a Paleo diet, which has helped, but the endo said he didn't believe diet changes really factor into feeling better. It's all about the medication. 

 

I think having experienced this with my husband is what adds extra stress to my DD's situation. We've essentially just started, but it already feels like it's going to be a long journey.

[Vintage81]

Your endo sucks, the TSH is already out of bound even by the highest parameters used now. She needs Free T3 and Free T4 tests run at a min and with a father with Hashimotos she needs antibody levels run. I'd go far, far away from that endo. 

 

 

It was alarming to me that the endo was ready to submit paperwork to the insurance company for the shots prior to doing more testing on the thyroid, especially since DH has Hashimoto's. We're definitely thinking about looking for another doctor, but I have a feeling that finding a good one is going to be difficult.  

[SparklyUnicorn]

doctors are on my sh* list lately so man you have my sympathies....

 

I think given that I'd pursue SOMETHING.  More testing.  Maybe find another doctor.

 

 

[HomeAgain]

Assuming she's healthy, I don't think there's any harm in not doing the shots. She'll just be a short adult (which is not necessarily a bad thing).

 

We've tried to keep an open conversation with her about her height. We've always known she'd be small, but we didn't know to what extent. Her sister is now the same height as her and I get asked all the time if they are twins. She doesn't seem bothered by it, but I have no clue how it'll affect her as she gets older. 

 

I understand.  I was the youngest of three, all of us very different body types: totally normal, very tall and long, and well, tiny. 

 

I think the best thing my parents ever did for me was helping me accept me for who I was.  I was bullied once in school that I can remember, and that was immediately put to rest by two of my 6ft tall guy friends. :001_wub:  But kids are mean, and they will pick on others and find a way to needle under the skin of others.  If not teasing because a kid is short, then because they are tall, or freckled, or have big ears, or flat chested, or acne, or bad haircut or.....well, you get the picture.

 

My parents helped me to seek out my gifts.  No, I'd never be a track runner, but I could dance.  I wasn't going to be the world's greatest piano player, but I could snag some sweet parts in our community theatre. My school had my back, too.  My elementary ordered special sizes of things like adjustable basketball hoops and desks.  There was not one person there who made me feel different.  Jr high...well, by that point I was a fierce ball of energy. :P

The biggest effect my size had was in relationships.  It's really hard to get serious about someone if it looks like you're dating a 4th grader.  I didn't really date until after high school when I had grown and my face matured some.  I can't see a parent looking at that like it's a bad thing, though! :D

[Spryte]

Was there anything specific your parents did, that you look back on as really helpful? We're always trying to be encouraging to her and explain that no matter what height she is, she can be successful. 

 

We have her in gymnastics right now and she loves it. Since she's homeschooled, she's not around a ton of other kids, so she's kind of sheltered. I worry about bullying and that sort of thing. I know that's not a good reason to do invasive shots, and it's definitely not a deciding factor, but it's still something I worry about.

 

My parents did a lot that I honestly don't even remember.  :)  There's a nursery rhyme type poem my mom used to read to me, about a little elf man and how he handled being called short, basically.  And there was the constant refrain from my dad:  "good things come in small packages."  This was said about packages and christmas presents and letters and ...me.  There was an over-riding sense of "you can do anything" and I never, never felt limited by height, or being a girl, or well, anything.  They did joke around and tell me to go out and hang on the monkey bars at times, but I never once thought they were serious.  I was always the shortest, in every class - I was first in line, in the front row, etc.  I don't recalled being bullied.  Do you remember the song Short People?   Yeh, I thought that was funny.  I just ... didn't take it personally.

 

I didn't play a lot of team sports, but more the compete against yourself variety - gymnastics was my thing till I started riding.  Then we went full on into horses.  I rode, and showed, and trained my own.  I wanted to be a jockey at one point, and that required being short.  And training my own horses...  That was empowering, you know?  I never thought of myself as an athlete, but as an adult, it was something I heard about myself, growing up. I just had fun.  My friends who actually went to the Olympics - now, they were athletes!  

 

In high school, my size was just ... who I was.  Boys found it fun to try to lift me - in a fun way.  I didn't really care about that, but had no problem saying when not to.  I could fit into small hiding spaces for games.  I played many instruments, and at one point got a kick out of playing tuba for a semester because, well, it was funny.  The size, you know?  

 

None of that is probably very helpful, but whatever my parents did - it must have worked.  I never felt uncomfortable.  I did, however, marry a tall guy.  It makes reaching things in the upper cabinets much easier.

[gardenmom5]

 

 

 

Blood work showed abnormality with thyroid - TSH was high, 5.6, total T4 normal, T3 uptake(?) normal. Free T3 and free T4 were not tested. Everything else was normal. Endo wants to do blood work in a month to retest the thyroid. (My husband has Hashimoto’s, so it wouldn’t surprise me if my daughter had thyroid issues too.) 

 

tsh is high.  even western med will start treating with synthroid with a tsh >4

total t4 and total t3 are completely *worthless* numbers.  they include bound (not available) and unbound (what you need to know.)

don't take the endos word for "normal".

get the actual results, and compare them to the optimum lab's ranges for the test given.

with your dh having hashis - get the antibody test.

reverse t3 will tell you if she's pooling, or how well she's converting t4 -t3 (pooling and high t3 are two different things, and they are treated differently.  I have a ND - who ignored my rt3 because I wasn't pooling.  no, I was just high.)

 

I would strongly urge you to check out "stopthethyroidmadness.com"

they have tons and tons of information - and they are educating drs about thyroid.

they also have multiple closed facebook groups (broken down into specific areas re: basic thyroid, adrenal, children, etc.. where you can ask people who actually know something about what you are dealing with.

they are

ftpo  (for thyroid patients only).

they have a children's group.

 

 

 

Your endo sucks, the TSH is already out of bound even by the highest parameters used now. She needs Free T3 and Free T4 tests run at a min and with a father with Hashimotos she needs antibody levels run. I'd go far, far away from that endo. 

:iagree:  :iagree: 

 

During the growth hormone stim test, they were looking for her level to go above 10...hers went to 11, so she's definitely producing enough growth hormone.

 

My husband's Hashimoto's diagnosis is fairly recent, about a year ago, but he already hates his endo. Its exactly as you described. For instance, he has a lot of pain in his hands and his knees. During his last appointment, he told the endo about the pain, and the doctor laughed at him. He said he couldn't help DH with the pain and that he needed to see a hand doctor. DH also follows a Paleo diet, which has helped, but the endo said he didn't believe diet changes really factor into feeling better. It's all about the medication. 

 

I think having experienced this with my husband is what adds extra stress to my DD's situation. We've essentially just started, but it already feels like it's going to be a long journey.

 

has he ever had a 24 hr cortisol test?

high cortisol can cause pain.

again - I strongly encourage you to go to stop the thyroid madness dot com,

and their facebook groups that are pertinent to your situation.

[Ottakee]

We started with Endo at age 7 with my daughter. They started her on thyroid meds at that time. Low dose but it helped.

 

She is now 21 and 4'10" on a tall day. Doctor was borderline on using HGH but said that for a girl 4'10 was livable and the shots are extremely expensive.

 

Had her predicted height been much shorter we would have pushed for it. It is OK. I do think her life would be a bit easier if she were taller but it is OK.

[JumpyTheFrog]

many other family members have celiac.

Get her a *thorough* celiac blood panel. Then, regardless of the results, have her try a *strict* gluten-free diet (and perhaps dairy-free, too) for several months and see what happens. I see no reason to try HGH treatment until dietary changes have been tried and the thyroid problem has been addressed by someone not so dismissive as her endo. Fire him or her. As far as I know, it has been decades since a TSH over 5 was considered normal.

[JumpyTheFrog]

Oh yes, antibody tests too. Get copies of all results.

 

You can order your own labs from www.directlabs.com in all but a handful of states.

[displace]

Thyroid problems can absolutely cause growth problems in a child. It's good you're seeing a ped Endo and they're following it.

 

Fwiw, I think for certain heights you may want to consider living standards. I'm sure you can google optimal minimal heights. I bet you understand what I mean, but I'm thinking of practical matters: chairs, beds, stairs, light switches, vehicles all too large to use. Needing steps and stools on a daily basis can be difficult.

Edited January 18, 2017 by displace

[Vintage81]

I see you're in TX- when I was going through a scare with dd's thyroid a few months ago, several here recommended I make sure she went to a pediatric Endocrinologist and if possible through a Children's Hospital, like Texas Children's. Are you in a location where that's a possibility? 

 

Looks like Texas Children's is in the Houston area, which is about 3 hours from where we are. I'll look into children's hospitals in my area. Thank you for the suggestion.

[Vintage81]

I understand.  I was the youngest of three, all of us very different body types: totally normal, very tall and long, and well, tiny. 

 

I think the best thing my parents ever did for me was helping me accept me for who I was.  I was bullied once in school that I can remember, and that was immediately put to rest by two of my 6ft tall guy friends. :001_wub:  But kids are mean, and they will pick on others and find a way to needle under the skin of others.  If not teasing because a kid is short, then because they are tall, or freckled, or have big ears, or flat chested, or acne, or bad haircut or.....well, you get the picture.

 

My parents helped me to seek out my gifts.  No, I'd never be a track runner, but I could dance.  I wasn't going to be the world's greatest piano player, but I could snag some sweet parts in our community theatre. My school had my back, too.  My elementary ordered special sizes of things like adjustable basketball hoops and desks.  There was not one person there who made me feel different.  Jr high...well, by that point I was a fierce ball of energy. :p

The biggest effect my size had was in relationships.  It's really hard to get serious about someone if it looks like you're dating a 4th grader.  I didn't really date until after high school when I had grown and my face matured some.  I can't see a parent looking at that like it's a bad thing, though! :D

 

 

My parents did a lot that I honestly don't even remember.   :)  There's a nursery rhyme type poem my mom used to read to me, about a little elf man and how he handled being called short, basically.  And there was the constant refrain from my dad:  "good things come in small packages."  This was said about packages and christmas presents and letters and ...me.  There was an over-riding sense of "you can do anything" and I never, never felt limited by height, or being a girl, or well, anything.  They did joke around and tell me to go out and hang on the monkey bars at times, but I never once thought they were serious.  I was always the shortest, in every class - I was first in line, in the front row, etc.  I don't recalled being bullied.  Do you remember the song Short People?   Yeh, I thought that was funny.  I just ... didn't take it personally.

 

I didn't play a lot of team sports, but more the compete against yourself variety - gymnastics was my thing till I started riding.  Then we went full on into horses.  I rode, and showed, and trained my own.  I wanted to be a jockey at one point, and that required being short.  And training my own horses...  That was empowering, you know?  I never thought of myself as an athlete, but as an adult, it was something I heard about myself, growing up. I just had fun.  My friends who actually went to the Olympics - now, they were athletes!  

 

In high school, my size was just ... who I was.  Boys found it fun to try to lift me - in a fun way.  I didn't really care about that, but had no problem saying when not to.  I could fit into small hiding spaces for games.  I played many instruments, and at one point got a kick out of playing tuba for a semester because, well, it was funny.  The size, you know?  

 

None of that is probably very helpful, but whatever my parents did - it must have worked.  I never felt uncomfortable.  I did, however, marry a tall guy.  It makes reaching things in the upper cabinets much easier.

 

 

Thank you both for your replies. It's encouraging to hear your perspectives.  :001_smile:

[Classic Mom]

Thyroid issues and celiac are linked. If you have celiac, you have annual thyroid bloodwork for this reason.

Also, not growing is one of major symptom of celiac in kids. I would get a celiac panel for her. And, of course, follow up on those thyroid numbers.

[Vintage81]

tsh is high.  even western med will start treating with synthroid with a tsh >4

total t4 and total t3 are completely *worthless* numbers.  they include bound (not available) and unbound (what you need to know.)

don't take the endos word for "normal".

get the actual results, and compare them to the optimum lab's ranges for the test given.

with your dh having hashis - get the antibody test.

reverse t3 will tell you if she's pooling, or how well she's converting t4 -t3 (pooling and high t3 are two different things, and they are treated differently.  I have a ND - who ignored my rt3 because I wasn't pooling.  no, I was just high.)

 

I would strongly urge you to check out "stopthethyroidmadness.com"

they have tons and tons of information - and they are educating drs about thyroid.

they also have multiple closed facebook groups (broken down into specific areas re: basic thyroid, adrenal, children, etc.. where you can ask people who actually know something about what you are dealing with.

they are

ftpo  (for thyroid patients only).

they have a children's group.

 

 

 

:iagree:  :iagree:

 

 

has he ever had a 24 hr cortisol test?

high cortisol can cause pain.

again - I strongly encourage you to go to stop the thyroid madness dot com,

and their facebook groups that are pertinent to your situation.

 

 

Thank you for all of the info. My DH has not had a cortisol test, but we'll definitely look into doing that.

[SKL]

Was there anything specific your parents did, that you look back on as really helpful? We're always trying to be encouraging to her and explain that no matter what height she is, she can be successful. 

 

We have her in gymnastics right now and she loves it. Since she's homeschooled, she's not around a ton of other kids, so she's kind of sheltered. I worry about bullying and that sort of thing. I know that's not a good reason to do invasive shots, and it's definitely not a deciding factor, but it's still something I worry about.

 

My daughter is in b&m 5th grade, and she is still the size of many 1st graders.  Although she sometimes gets mistaken for a wandering primary student, it doesn't seem to bother her.  She plays various sports, as you can see in my signature.  So far no bullying.  Well, once a large boy with "anger management issues" (my kid's words) tried to control her by grabbing her arm.  She informed him that if he did that again, she would have to defend herself, and he would be hurting.  He never bothered her again.  :P

 

My daughter loves gymnastics, which is great, because small size is an advantage in that sport.  Her gymnastics skills give her a lot of self-esteem.  Martial arts probably help with confidence also.

[CadenceSophia]

I know it seems like endo's should be the experts but it is shocking how many won't look at any research that came out after their time in medical school. It is a real disgrace. Most just aren't interested in thyroid patients.

 

Stop the thyroid madness has the full list of tests she needs. You need to fight for every single one. They always balk at RT3 claiming that is only relevant in critical care if you are near dying or something but there is plenty of actual research supporting its use.

 

You said she already had an MRI of the pituitary? The other one is an u/s of the thyroid to look for holes from Hashi's. Antibody numbers can fluctuate and even come and go completely over the course of the disease.

 

A projection of 4'10 probably wouldn't be low enough for me to pursue hgh if that were the sole factor. If this endo stinks, look for another one or even a thyroid informed nurse practitioner can be great to get that one aspect under control. You can always keep up the follow ups with the endo and if the height projection changes or testing reveals actual hgh deficiency, use the endo for that.

[gardenmom5]

Thank you for all of the info. My DH has not had a cortisol test, but we'll definitely look into doing that.

I should have mentioned, cortisol is adrenal - but they are often linked to thyroid .

Blood test is worthless.

24 hr test is a spit test. Four samples- no eating OR drinking before taking a sample. I think it's 30 minutes, but might be an hour.

Sttm.com has information about what to avoid for two weeks beforehand because it will taint the sample. I.e. coffee - caffeine

They also suggest freezing the samples and overnighting them.

[gardenmom5]

Sttm.com groups are great about helping find a dr in your area.

[Vintage81]

Get her a *thorough* celiac blood panel. Then, regardless of the results, have her try a *strict* gluten-free diet (and perhaps dairy-free, too) for several months and see what happens. I see no reason to try HGH treatment until dietary changes have been tried and the thyroid problem has been addressed by someone not so dismissive as her endo. Fire him or her. As far as I know, it has been decades since a TSH over 5 was considered normal.

 

 

Diet change is something we're thinking about. DH follows a Paleo diet and has felt better (although not 100%).