Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Thyroid Situation...

e&j0304

By e&j0304
in Related Issues & Disorders

Recommended Posts

e&j0304 Enthusiast
e&j0304
Posted

Ok, so here's the deal. My little girl was tested 3 months ago for suspected hypothyroidism. Her labs were: TSH 3.7 and Free T4 0.6. The dr. wanted to wait and retest her so we just did that and her new tests results are: TSH 2.62 and Free T4 1.2. So last time her results were borderline abnormal. Her TSH should really be under 3 for sure and we would like to see it below 2.5. Her Free T4 was obviously low at 0.6 but is now completely normal.

What do you make of that? She is on no meds. Her symptoms include hair loss/thinning/no growth, short stature, protruding abdomen, aching legs, cold skin, mottled-looking skin (red/purplish lacy pattern on her skin). Apparently this is all normal and ok...

She is currently in the 5% for height and 60% for weight. She is so short compared to other kids her age. I am 5'9 inches tall and my husband is 6'4. Our son is above average in height. We were all above average in height as children.

What would you do with these new results? Should we just let it ride for another year and see how she does? I already feel like a crazy parent because she didn't want to run these tests in the first place and I think she was shocked that they came back borderline high last time.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


georgie Enthusiast
georgie
Posted

I am no expert but that is still sounding like HypoThyroid to me. Were Thyroid Antibodies tested ? When you have autoimmune Thyroid - all labs are skewed and you can't dx by those labs.

The height is a worry. I am thinking and I am getting a gut feeling here of secondary Hypo - from a pituitary problem. Has she been tested for that ? I am not sure what the tests are in children but my hubbie is having this done now , and it all the hormones, and Growth Factor that are tested. Its quite difficult to get through all the results - and you will need a Dr that understands HypoPituitary.

I don't know if this helps or not but can feel your despair. I feel the same with hubbie -as he is battling also for a correct dx.

e&j0304 Enthusiast
e&j0304
Posted
  • Author

Thanks for the advice, Georgie. She has not been tested for anything other than TSH and Free T4. She was tested about 2 or so years ago for FISH levels? I'm not sure what that is but they said it was normal.

It's frustrating because I think drs. think we're crazy. I know that it's not normal that my 4 year old's hair was falling out in clumps and is not not growing at all. We have pictures of her at the age of 2 and her hair is almost EXACTLY the same length. It has grown maybe 1/4 in. in 2 years with NO haircuts. That can't be normal. She also struggles terribly with constipation and they just want me to give her a laxative...

Anyway, thanks for your help. I hope we can get it figured out!

georgie Enthusiast
georgie
Posted

You can't always dx autoimmune Thyroid without doing the Thyroid Antibodies testing !! My TSH was normal (1.1) and yet I had Thyroid Antibodies attacking and killing my Thyroid. It took me 30 years to be dx as all my Drs did was the TSH test. I hope you can find a Dr soon that can order the right tests for you. It must be so distressing to see your dd so ill. Sometimes Osteopaths are better for this type of problem. Have you tried them ? Or ask your local Compounding Chemist - as they often know Drs in your area that are thyroid aware.

Guest Eagle
Guest Eagle
Posted

I would take her to an endocrinologist who can test other functions besides thyroid such as pituitary, adrenal, etc. Her symptoms sound exactly like what I had for years before my hypothyroid was treated. It is a miserable way to feel--you have no energy, bloat, lose hair, and your brain just won't work right.

e&j0304 Enthusiast
e&j0304
Posted
  • Author

Thank you all for the advice. Her dr. called today and said that they want to test her again in another 3 months. They will do antibody testing at that time to determine if she has Hashi's. Hopefully we will find out one way or another if there is something really wrong with her.

I really appreciate the advice and support!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,810
    • Most Online (within 30 mins)
      7,748
    Becky103
    Newest Member
    Becky103
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • AuntieAutoimmune
      Royal Caribbean Only, Please

      By AuntieAutoimmune · Posted

      Great tips, Deb. Thanks.  What a pity that they no longer mark items as gluten-free. And it is even more of a shame that you must bring protein bars instead of the crew helping you with your needs. Are you planning on sailing Royal again? 
    • Scott Adams
      Hidden Gluten in distilled vinegar

      By Scott Adams · Posted

      I've not heard of any issues with Primal Kitchen, but it certainly would be worth not using the brand for a while to see if this helps. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
    • Scott Adams
      Can I trust the gluten free label if a product was made in a facility that also processes gluten?

      By Scott Adams · Posted

      If you are super sensitive you may want to look for only Certified Gluten-Free Products, as @trents mentioned.
    • Scott Adams
      Gluten free/ non dairy , low calorie pudding

      By Scott Adams · Posted

      I'm not sure about low calorie, as puddings are typically a dessert, but we do have this category: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-pudding-recipes/ This one might work if you cut back on the sugar:    
    • DebJ14
      Royal Caribbean Only, Please

      By DebJ14 · Posted

      We are off next week on our 9th RCCL cruise since our diagnoses.  I send an email to special_needs@rccl.com before every cruise letting them know that I am both dairy and gluten free and my husband is gluten free.   Unfortunately, with the new menus they introduced in 2023, they removed the gluten-free designation from each item on the menu.  Instead of having a dedicated person take gluten-free orders, it now falls to your regular wait staff.  Some have been great and some not so good.  We had a great cruise in May and hit it off with our head waiter.  She went the extra mile and ordered gluten free desserts that were not on the menu.  My problem arises from other food allergies.  I am allergic to dairy, beef, and several types of fish.  On those days my husband is a happy camper with a steak or salmon, veggies and a baked potato.  I end up not getting enough protein, so I bring protein bars.  I also bring snacks for the room. As long as the food is commercially prepared and unopened, you can bring it. Often the only dessert choices that are gluten free contain dairy, so I am out of luck.  But, if you are just gluten free, they have plenty of choices.  See the head chef in the Windjammer buffet and he will give you a tour of the gluten-free choices.  They usually have 2 gluten free desserts out at lunch and they are labeled gluten free. We have found that it works best to have assigned dining rather than anytime.  That way the waiters learn from the get go what our needs are, and we don't have to explain ourselves every night.  We also get a private table for 2.  I frankly got sick and tired of tablemates telling me a little bit of gluten would not hurt me.
×
×
  • Create New...