[Adamsmama]

Hi! I post here a lot about my oldest son (4yrs old) who is dev. delayed 2+ years. Well, I just had a baby who is 6 weeks old today and I just got her results of her nb screening and it came back as hypothyroidism. It said she needed another TSH test right away on the sheet. So I called the dr. the very next morning I went to the lab and had her blood tested (which was a total nightmare). Anyway, her bloodlevel is still elevated which would be hypothyroidism but they didn't test her T4...just TSH. So they say they aren't too concerned and want to recheck her in 2 weeks. I'm in panic mode and I told the dr. and nurse this but they don't seem too concerned at all. I'm thinking I'm going to go back on Monday to get another blood test and if that one comes back badly she will need meds. I'm just afraid to wait too long. Has anyone here had experience with this? If so her first level was 26 (apparently 23+ is bad for a nb) and her second level was 9.8 (normal for her age would be .4-4 and hypo would be 7-75). I guess they are feeling like these scores are borderline and that she isn't showing symptoms.

I just feel so helpless...it feels like it is starting all over again (even though DS1 didn't have an abnormal test like this--it was just always "wait and see" with the drs.)

 

[mom3b1?]

My mom has hypothyroidism. The meds available today are soooo much better than what we had in the 70's. Mom used to have to take all different pills, and pills to regulate the pills, and if she was later or off on her dose she would get crazy and have these rages. When mom's meds are right she's the neatest coolest mom ever. Thank God, the meds today are so much better. She hasn't had a problem like that in many years.

I'd have a sit down with your Doctor. It may be that they don't want to treat for moderate cases. They may have good reasons for handling things the way they are, and if you knew what they were it'd help. Or, they may need to make a decision with you about what to do.

Hang in there!

Kiley

 

[sbgrace]

Can you see another dr.? Borderline or not I'd want my child fully assessed (and treated if needed). I can't see messing around with congenital hypothyroidism--maybe see an expert?

 

[mamastotwo]

My daughter gets her thyroid checked every six months because hypothyroidism is prelevant in people with T21. The mom's with babies who have it have said the medicine has little side effects and it's a pretty easy thing to manage. Did your dr. consult with an endocrinologist about the results (that's what my ped does, fax all the blood tests to other doctor.) She doesn't have to be showing symptoms to be needing the hormone? My daughter's were slightly elevated once at six months but still within range and the endo wanted her tested again in 3 months to see if they continued rising (they didn't) and we would then contimplate supplementing.

If hypothroid goes untreated for awhile it can be serious, but now with all the screening they have prevented a lot of that. I would be happy it was picked up in the screening, and if you don't feel comfortable about how your Dr. is handling it see a pediatric endo. Hugs to you and congrats on your new little one!

 

[chann96]

I honestly fail to see the point of the doctor doing the screening if he's just going to blow off the results. Quite possibly it's nothing, but it's rather irresponsible to me to be so laisez-faire about it. My recommendation would be to ask your ped for a referral to a pediatric endocrinologist or to self-refer if your insurance allows. Peds are good for a lot of things, but if there is an issue a pediatric specialist is the way to go to get better answers. Best of luck to you and congrats on the new baby!

 

[Adamsmama]

To answer some questions. My ped said he spoke with an endo about the results and the endo is the person who suggested waiting for 2 more weeks. He said it was good the numbers were going down and he doesn't believe she has hypothyroidism. I think it was quite ridiculous to order the TSH without the T4 test if he needs both to make a correct diagnosis.

Thanks for all the replies!