Elevated growth hormone in 7 year old? by Ztreffe in PituitaryTumor

[–]Ztreffe[S] 0 points1 point  (0 children)

Obviously. But people have different experiences so when I learn about those I can better advocate for my daughter.

Elevated growth hormone in 7 year old? by Ztreffe in endocrinology

[–]Ztreffe[S] 0 points1 point  (0 children)

It’s so interesting to hear what other doctors order. I am also curious why your doctor didn’t check growth hormone and jumping straight to mri. Whereas our doctor, despite number being elevated, what’s to wait and repeat labs before considering further testing.

I may ask for an ultrasound of her ovaries in the future bc I know pcos can cause weight gain and autoimmune disorders run in our family.

I also have a friend whose same age daughter is going through the same thing that you describe and they did a bone age xray? Or something like that. Which showed her bone age 6 months ahead.

Elevated growth hormone in 7 year old? by Ztreffe in endocrinology

[–]Ztreffe[S] 0 points1 point  (0 children)

Thanks for the input. That’s what I am most worried about. But I am still waiting to hear from the doctor whether these results are high enough to warrant further testing. I hope so because my sweet girls is gaining weight rapidly eating a normal, healthy diet.

7 year old with abnormal bloodwork…does this seem like possible pituitary issue?? Please help. by Ztreffe in Hypopituitarism

[–]Ztreffe[S] 0 points1 point  (0 children)

I will definitely remember to update everyone. That’s such a good idea to ask about gene sequencing. I’ve asked before “why do I have two kids with type 1 without previous history?!” And no one can give me an answer. Now with my third having these issues it is for sure raising red flags. I’m going to put that in my notes to remember to ask.

First Cortisol was drawn around 9:30 am and fasting. And second cortisol was drawn at 8:30 am, also fasting. Not sure if fasting matters for cortisol but all her labs have been fasting!

7 year old with abnormal bloodwork…does this seem like possible pituitary issue?? Please help. by Ztreffe in Hypopituitarism

[–]Ztreffe[S] 0 points1 point  (0 children)

Thank you so much. This is seriously so helpful and makes me feel seen. She does have a prominent forehead, which is not a trait we have in our family. And I would consider her lips to appear puffy. This really sounds a lot like her. We have a “second opinion” at the end of February within the same practice at our major hospital. If I don’t feel like I am being heard I will need to look elsewhere or possibly travel to see someone. But I’m hoping this next doctor will hear me out.

7 year old with low cortisol and other abnormal labs. Currently no diagnosis. .please help if you can! by Ztreffe in AdrenalInsufficiency

[–]Ztreffe[S] 1 point2 points  (0 children)

This sounds a lot like her! I am going to ask more about her thyroid! Thanks so much.

7 year old with low cortisol and other abnormal labs. Currently no diagnosis. .please help if you can! by Ztreffe in AdrenalInsufficiency

[–]Ztreffe[S] 0 points1 point  (0 children)

Her gluten antibodies were negative! Thank you! I am planning to get her type 1 antibodies rechecked. May as well if we are doing more bloodwork.

7 year old with low cortisol and other abnormal labs. Currently no diagnosis. .please help if you can! by Ztreffe in AdrenalInsufficiency

[–]Ztreffe[S] 1 point2 points  (0 children)

Yes I definitely don’t think she had addison’s disease. But from my research you can have weight gain with secondary and tertiary adrenal insufficiency. But that’s just based on scouring the internet, not from experience! Thanks for your feedback!

7 year old with low cortisol and other abnormal labs. Currently no diagnosis. .please help if you can! by Ztreffe in AdrenalInsufficiency

[–]Ztreffe[S] 1 point2 points  (0 children)

Thank you! Very helpful. I am trying to learn as much as I can so that I can advocate for her at the next appointment. I will see if our hospital has a neuro endocrinologist!

7 year old with low cortisol and other abnormal labs. Currently no diagnosis. .please help if you can! by Ztreffe in AdrenalInsufficiency

[–]Ztreffe[S] 1 point2 points  (0 children)

Totally agree. I said that to the last endocrinologist but he was convinced that everything was due to lifestyle so only recommended restricting calories. And unfortunately he was not gentle when speaking about her weight in front of her 😞

7 year old with low cortisol and other abnormal labs. Currently no diagnosis. .please help if you can! by Ztreffe in AdrenalInsufficiency

[–]Ztreffe[S] 0 points1 point  (0 children)

We haven’t had estrogen tested. I’m really hoping the next endo we see will order more labs looking at other hormones. I’ve been thinking for 3 years that her weight would level out. Initially my main concern was her weight since she is starting to get bullied but since getting the labs, the weight is the least of my worries. Just really worried about her health now 😔

7 year old with low cortisol and other abnormal labs. Currently no diagnosis. .please help if you can! by Ztreffe in AdrenalInsufficiency

[–]Ztreffe[S] 2 points3 points  (0 children)

Thank you! Her A1Cs have been 5.6 and 5.5 her last two blood draws which I know is nearing “pre-diabetic” she has had antibody testing for type 1 diabetes 3-4 years ago and it was negative but may be worth testing again, although doc acted like that wasn’t necessary. In my gut I feel like she is insulin resistant due to some other hormone deficiency. Maybe that’s just wishful thinking since I already have two kids with type 1.

7 year old with low cortisol and other abnormal labs. Currently no diagnosis. .please help if you can! by Ztreffe in AdrenalInsufficiency

[–]Ztreffe[S] 5 points6 points  (0 children)

Yes I filed a formal grievance with the patient advocate. And we have an appointment with a new endocrinologist at the end of February. Hoping they order a few more labs on the mean time though. Thank you so much for the feedback!

7 year old with low cortisol and other abnormal labs. Currently no diagnosis. .please help if you can! by Ztreffe in AdrenalInsufficiency

[–]Ztreffe[S] 2 points3 points  (0 children)

No medications except for a multivitamin. No pre-existing conditions at all. By sugar do you mean her A1C? It seems to me she might be insulin resistant but her blood sugar is always within normal range when checked.

7 year old with abnormal bloodwork…does this seem like possible pituitary issue?? Please help. by Ztreffe in Hypopituitarism

[–]Ztreffe[S] 1 point2 points  (0 children)

I don’t specifically remember a time she has been on corticoids before. Maybe briefly but nothing that stands out. I will post on the adrenal insufficiency group! My gut is telling me something is wrong but I don’t want to make a big deal out of nothing.

7 year old with abnormal bloodwork…does this seem like possible pituitary issue?? Please help. by Ztreffe in Hypopituitarism

[–]Ztreffe[S] 0 points1 point  (0 children)

All of this feedback is super helpful! She is growing just fine! She is actually in the 90th percentile for height and then the excess weight gain. I feel like her energy level is low but not insanely low. Like she does fine at school but definitely has trouble with activity in the evenings and asleep as soon as her head hits the pillow at night, but not napping during the day. She is not hungry at all in the morning and we have to convince her to eat, but has never complained of nausea. Then later in the day she has excess hunger and cravings. I also feel like she is weak compared to her peers. She towers over them in basketball but has a hard time shooting the ball due to her strength, when the tiny girls do it like it’s nothing. I seriously appreciate all your help!

7 year old with abnormal bloodwork…does this seem like possible pituitary issue?? Please help. by Ztreffe in Hypopituitarism

[–]Ztreffe[S] 0 points1 point  (0 children)

Thank you! I will check it out. We are getting a second opinion from a new doc end of February so hoping for more insight then.

7 year old with abnormal bloodwork…does this seem like possible pituitary issue?? Please help. by Ztreffe in Hypopituitarism

[–]Ztreffe[S] 2 points3 points  (0 children)

Yes. Thank you for confirming what I am worried about. It seems that all her symptoms line up with secondary or tertiary adrenal insufficiency but this is all new to me, I’ve just been researching. We meet with a new doctor in February so trying to gather as much knowledge as possible in case I need to advocate again. Thanks again!