Jump to content
  • 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 Questions


dionnek

Recommended Posts

dionnek Enthusiast

I recently had some blood tests done since I haven't been feeling any better being gluten-free (I have been on medication for hypothyroid since becoming pregnant 2 years ago and was just dx with celiac in April this year, and have been gluten-free for 4 months now). My TSH now shows .093 and my T4 is 12.6, which from everything I can find is hyper, not hypo. My question is, should I stop taking my hypo medication (I'm taking levoxyl 50mcg a day)? I do not go back to my endo until the end of Oct. (they don't have any earlier appts), so am not sure if I should keep taking this until then or not. Also, my WBC was low (3.9, so not too low) and my B12 was high (1022)! Does anyone know what all this means? Another wierd thing was my iron was high (I've always been anemic in the past)!

My continuing symptoms are headache, tired, depression and mood swings, and still have D 6 plus times per day. I had "significant damage" to my intestines from the celiac, so I'm attributing the D to the fact that I still haven't healed. I also have cold/hot flashes and sweat a lot, along with other aches and pains (that we probably all have) :) Any help would be appreciated. I trust you guys more than my drs! :D Thanks!


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



Celiac.com Sponsor (A8-M):



Corkdarrr Enthusiast

Now, I'm no doctor. But it seems to me that if you had changed from hypo to hyper you wouldn't be still feeling so fatigued or depressed with the fun of the mood swings added in.

If I were you, I probably wouldn't stop taking the meds just because they take at least 3 weeks to build up in your system. So when you DO go back to the doctor, you want them to get an accurate read. I would also call the doctor's office and insist that they get you in for bloodwork, at the very least. I would insist, insist and insist some more. And if they still refuse to see you before your scheduled appointment which is almost two months away, I'd probably have them send my files over to a new doctor.

Per all those numbers, I haven't got a clue. I was DX hypothyroid 12 years ago when I was like 13 years old. Nobody ever discussed numbers or their significance with me (if they did, well...I was 13. I didn't really care.)

Surely there is someone else on this board that DOES know what all those numbers mean.

good luck!

Courtney

Nancym Enthusiast

Call your endocrinologist and ask to speak to his nurse, pronto! You don't want to go around being hyper, it isn't pleasant. You can have D as a side effect to hyperthyroid. If you've got hashimoto's it isn't uncommon for your thyroid to kick into gear again. Sometimes it does go away once you get off gluten (30% remission rate according to Dr. Fine). So, call the nurse and ask for guidance.

sspitzer5 Apprentice
I recently had some blood tests done since I haven't been feeling any better being gluten-free (I have been on medication for hypothyroid since becoming pregnant 2 years ago and was just dx with celiac in April this year, and have been gluten-free for 4 months now). My TSH now shows .093 and my T4 is 12.6, which from everything I can find is hyper, not hypo. My question is, should I stop taking my hypo medication (I'm taking levoxyl 50mcg a day)? I do not go back to my endo until the end of Oct. (they don't have any earlier appts), so am not sure if I should keep taking this until then or not. Also, my WBC was low (3.9, so not too low) and my B12 was high (1022)! Does anyone know what all this means? Another wierd thing was my iron was high (I've always been anemic in the past)!

My continuing symptoms are headache, tired, depression and mood swings, and still have D 6 plus times per day. I had "significant damage" to my intestines from the celiac, so I'm attributing the D to the fact that I still haven't healed. I also have cold/hot flashes and sweat a lot, along with other aches and pains (that we probably all have) :) Any help would be appreciated. I trust you guys more than my drs! :D Thanks!

Hi,

Very generaly speaking, a TSH between 1 and 2 is good. So, you may be taking a dose that is a little too high. I'd talk to your endo. Sometimes people feel great with a lower TSH and sometimes not. I think it's an individual thing. Do you have any hyper symptoms (Open Original Shared Link)? I would not stop taking it unless the doc tells you to.

dionnek Enthusiast

Just talked to the dr. and he said to stop taking the levoxyl and come back in 6 weeks for blood tests again. I'm not sure if that's such a good idea, but guess I'll try it and see how I feel. I have most of the symptoms anyway (seems that the hyper and hypo symptoms are the same :rolleyes: ) so it's hard for me to tell by how my body feels. I've never had the weight loss or gain, so I can't go by that, and I don't have a period anyway and have 6 or more BMs a day, so can't go by that either <_<

Plus I am always hot or cold, and I sweat A LOT (when I exercise I sweat buckets!). I'm just all screwed up :lol:

From what I've read, it is better to be hypo than hyper, since they can fix hypo more easily, so guess it can't hurt too much to go off the meds for 6 weeks?

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Florence Lillian's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Gluten-Mimicking Proteins that can affect some Celiac individuals.

    2. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      2

      Second chance

    3. - Scott Adams replied to elisejunker44's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Schar's products contain wheat!

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,601
    • Most Online (within 30 mins)
      7,748

    Dale S
    Newest Member
    Dale S
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
    • Scott Adams
      Thank you for sharing your experience, Florence. It’s important to clarify, though, that proteins like zein in corn, panicin in millet, and kafirin in sorghum are not considered gluten and have not been shown to trigger the same autoimmune intestinal damage seen in celiac disease. Some people with celiac disease do report symptoms with certain gluten-free grains, oats, or other foods, but that reflects individual intolerance or sensitivity—not a proven “gluten-mimic” effect that damages the small intestine. Certified gluten-free oats are considered safe for most people with celiac disease, though a small subset may react to avenin. If specific foods consistently cause symptoms for you, it makes sense to avoid them personally, but it’s helpful for readers to know that these foods are still medically classified as gluten-free and generally safe for the broader celiac community.
    • Scott Adams
      It’s true that awareness of celiac disease can vary among physicians, particularly outside of gastroenterology, and many patients end up educating their own providers. Reaching out to someone you trusted for 25 years makes sense if you felt heard and supported. That said, celiac disease management often benefits from a team approach, including a knowledgeable primary care provider and, when needed, a gastroenterologist or dietitian familiar with gluten-related disorders. Advocating for yourself is not unreasonable—it’s part of managing a chronic condition. If your current provider relationship isn’t working, it’s appropriate to seek care where you feel respected and properly supported.
    • Scott Adams
      I understand why that feels concerning. Some Schär products use specially processed wheat starch that has had the gluten removed to meet strict gluten-free standards (under 20 ppm in the U.S. and EU), which is why they can legally and safely be labeled “gluten free” for people with celiac disease. However, wheat must still be listed in the ingredients and allergen statement because it is derived from wheat, even though the gluten protein has been removed. For individuals with a true wheat allergy, these products are not appropriate—but for those with celiac disease, properly tested gluten-free wheat starch is considered safe under current medical guidelines. That said, it’s completely reasonable to prefer products made without wheat starch if that gives you greater confidence, and clearer front-of-package communication could certainly help reduce confusion for shoppers.
    • elisejunker44
      I have enjoyed Schar's gluten free products for years. However, some items Do contain Wheat and are not clearly labeled on the front. Indeed the package states 'gluten free' on the front, and it is not until you read the ingredient label that one see's wheat as the first ingredient. Some celiacs may be willing to take a chance on this 'gluten free wheat', but not me. I strongly feel that the labeling for these wheat containing products should be clearly labeled on the front, with prehaps a different color and not using the 'no gluten symbol on the front. The products are not inexpensive, and also dangerous for my health!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.