still symptomatic...why

[Oregondaughter]

My 9 year old daughter was diagnosed with hypothroidism about 6 weeks ago.  She has been on levothyroxen and her last blood test showed her tsh and t3 and t4 within normal levels.  But her symptoms seem worse, not better.  How can this be?  What else could be going on?

[katytalla]

hi im 29 and a few year ago i suffered form hyperparathyroid tumour. my calcium levels were dangerously high after seeing a specialist. i went down to 7 and half stone. i was tired, depressed, weak, muscleache,headsaches, sickness,dizzness and loads more. i got an operation to remove it and it has really helped me. when they were trying to find it i had 2 ultrasounds on my neck but neither found it,then i went to medical physics and had xray which found it on my left side. i hope you get sorted and keep on at the doctors if they dont listen

[goolarra]

Terrifying as a parent, AND terrifying as a child.  I feel so bad for your daughter.  I have a congenital heart defect that first manifested itself when I was 7 or 8.  It was very scary because I didn't have the language to describe what was happening to me.  Yeah, I could say I had a tummy ache or the sniffles, but my heart beating at 200+ and feeling like it was about to jump out of my chest (of course, I didn't know then that that's what I was feeling) was something I couldn't explain. I just felt wierd, and I couldn't identify or express it.  It's 50+ years later, and I still remember.

Really good suggestion on getting the tests before going in to see the pedi endo even if it doesn't take more than two weeks. (about a week before would be great since they'd still be "fresh") - TSH, FT3, FT4, TPOab, TGab,. I might wait on the sono and other scans.  My endo likes to come in and take a "live" look at at any of her concerns when the sono tech is finished.  Also, you might end up getting scans your endo doesn't care about, and missing others.  The bloodwork mentioned would be enough to adjust meds as soon as you see the endo.

[mtkst13]

it's got to be terrifying as a parent when there's something wrong with your child.  you just want to make everything better immediately, and you're helpless.

you're definitely on the right track.  she's on medicine...and you'll follow up with a pediatric endocrinologist as soon as possible.  

if it takes more than 2 weeks to get into an endo, i suggest getting her pediatrician to order tests (tsh, ft4, ft3, antibodies, sono of thyroid, maybe other scans?) so that you have the results for the endocrinologist at her first visit.  that's my suggestion.

[goolarra]

I'd really try to get her in to see an endo, even if you can't get in to see a pedi endo promptly, any endo is better than a doctor who initially prescribes on TSH alone.  Her symptoms are getting worse and TT3 is quite high.

How is she sleeping (is she getting a restful night's sleep or waking often)?  Is she more restless than she had been?  Any hand tremors?  Any idea what her heart rate is doing?  What does your daughter weigh?  (Just curious because 50 mcg can be an adult dose.)

I certainly wouldn't be considering Armour for someone whose TT3 is almost at the top of the range on a T4 only med.  Obviously, we know thyroid is a problem, I think it's important at this point to stabilize that before further testing...or at least give it more time to stabilize (it's only been a little over a month).

[Super_sally888]

Can you see if she responds better on armor?

Has she had iron, B12 and other things tested?

What about diet? Has she been screened for things like celiac (gluten intolerance)

S

[Oregondaughter]

She is still totally wiped out and super cranky...which is not normal for her.  She seems more tired and more irritable than ever.  She's on 0.5 of levothyroxen.

[goolarra]

It's a bit puzzling.  Her FT4 is okay.  I believe that's a total T3 number, and it's really quite high up in the range.  Unfortunately, TT3 is not as good an indicator of what's going on as FT3.  Total T3 tells you how much total (thus the name!) T3 there is in the body.  However, some of that T3 is chemically bound and therefore unavailable to the cells.  FT3 tells you what's actually available for your body to use.

There were only about four weeks between the labs.  The meds probably haven't had time to stabilize in the body yet.

Have her symptoms changed at all?  With T3 that high, I 'd be watching out for HYPER symptoms.  Sometimes the symptoms "cross over", e.g. fatigue can be a symptom of both hypo and hyper (especially if it's affecting sleep, but also if it gets the metabolism going fast enough to tire you out).

Any luck with a pediatric endo?  I think I'd try to see one as soon as possible.  Prescribing thyroid meds on the basis of TSH alone is never a good idea...since your daughter is only nine, it makes it really scary.  Also, TT3 is an archaic test - any doctor with any knowledge of thyroid uses FT3.  Things can change so fast with kids.

What's she on for meds?

[Oregondaughter]

Ok...that's hilarious.  Thanks for the clarification.  FT4 normal range is 0.6 - 1.6, she is currently at 1.17.  T3 normal range is 127 - 221, she is curently a 203.  And TSH normal range is 0.34 - 4.82 and she is at 2.17.  

We live in Salem.  Nice to hear from some Oregonians.

Denyc

[goolarra]

I should have mentioned that both FTB4 and I are Oregonians.  He currently lives in Bend, and I'm in Sisters.

[goolarra]

Do you have the reference ranges on the FT3 and FT4?

FTB4 is the signature of the member who responded to you!  It does sound like a thyroid test, doesn't it?  We'll have to get him to change his name or leave a few spaces between the test names and his!

A pediatric endo is a great idea...thyroid issues can be difficult to treat in adults, doubly so in growing children.

[Oregondaughter]

Her first round of labs were on 3/16/09 and they covered a lot of areas as we weren't sure what was going on.  At that point her TSH was 93.47 uIU/ml.  They didn't do a T3 or T4 at that time. Her next round was 4/15/09.  Her TSH was 2.17, her FT4 was 1.17 ng/dL, and T3 was 203 ng/dL.  I don't know what a FTB4 is.  She continues to complain of being tired, and is extremely irritable.  Especially toward the end of the day.  She is generally a very happy, easy going child.  It has been difficult to watch her little light dim and not know how to help her.  We are in the process of getting an appointment with a pediatric endocrinaologist.  

[FTB4]

Could you post all of her labs TSH Free T3 and Free T4  FTB4