Jump to content

  • 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):

For Those With Thyroid Disease: How Did Celiac Affect Your Meds?

0range

Recommended Posts

0range Apprentice
0range
Posted

It seems like most people I know with undiagnosed celiac are taking a thyroid dosage that is far too high for their body weight and/or have had wide fluctuations over the years and are unable to get a proper set dose. Just wondering what those with thyroid disease (that are on medication) have experienced.

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

Celiac.com Sponsor (A8-M):


nvsmom Community Regular
nvsmom
Posted

My thyroiditis was diagnosed at the same time as my celiac disease so I can not know if my dosage would hve been different if untreated. I sort of doubt it as I am on an almost full replacement dose now.

cyclinglady Grand Master
cyclinglady
Posted

My dosage has decreased barely in one year since going gluten-free. I am running hyper now (requested labs yesterday) but I have been hyper and hypo for the past three years. Keeping my thyroid stable has been difficult.

Corrie Rookie
Corrie
Posted

Before I realized I had celiac, my synthroid had to be adjusted frequently. I was all over the place, hyper, then hypo. Now that I have been gluten free for three years, I am much more stable, and the amount I take has decreased. I used to be on 137 mcg, and now I am on 100 mcg and holding steady. My endocrinologist said I was not absorbing the medicine as well as I should have, due to the damage celiac had caused to my small intestines.

I have Graves' disease, and my thyroid has been irradiated and killed completely. I am dependent on the medicine to replace my thyroid.

cyclinglady Grand Master
cyclinglady
Posted

Just want to clarify that my thyroid has been stable for the last 15 to 20 years (dx Hashi's).  Then I went through menopause.  It started acting up and I was then diagnosed with Celiac Disease.  My doctor has been monitoring my thyroid ever few months.  Normally, I let him know if I start to display hypo or hyper symptoms.  Right now, I'm hyper.  It's affecting my eye muscles, muscle strength when I run, hot, I'm jittery, etc.  Waiting for lab results.  Chances are (based on past history), I'll reduce my Armour Thyroid for a few months, and then go hypo again and then go back to my starting dosage.    It's definitely weird and frustrating.  

mamaw Community Regular
mamaw
Posted

corrie

I too have  no  functioning  thyroid  gland  due to RAI...dead  in the  water, they  can't  even find  any traces  of a gland on my ultrasound.... I also too  have Grave's.....I was  on  Synthyroid  for  years  .. I got to the  point  where  I  couldn't  function  &  got  very ill... I  demanded  to be  switched  to a  whole  glandular ( 2 1/2 years ago) &  finally now   have  a  better  life...My  endo  has  me  on  a  starting  dose  so  I'm  pretty  much  hypo all the  time, I  can't  get him  to up  my dose  a  little... He  is  afraid  I'll  become  hyper again &  I'm an  A Fibber  ....

GF Lover Rising Star
GF Lover
Posted

My hypothyroid has been stable with the same dose of med for 15 or so years.  It only fluctuation once during cancer treatments then returned to my baseline.  

 

Colleen

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

I do not think that thyroid replacement is based on body weight, it is based on your blood tests in an attempt to keep you in normal ranges.

beth01 Enthusiast
beth01
Posted

New to the Celiac, old on the Grave's and a lab technician for 16 years.  Doctors use your TSH and Free T4 results to base how they are going to adjusts meds.  If your TSH is either borderline high or low but you have a normal Free T4, they most likely wont adjust your meds unless you are hypersensitive with hypo or hyper ( I get awful body cramps if my TSH gets much over 5 which is considered borderline high, but do really well when I am borderline low).  I also know that when you have digestive diseases and disorders it is harder for your body to absorb everything, not just nutrients. I have fluctuated with my dosing for the last ten years and have finally found that I need to alternate my doses, taking 150 one day, 300 the next and then back to 150 and so on.  Being on such a high dose sucks since the synthetic hormone also leaches the calcium out of your bones which I now know from my lab results that so does celiac, double not yay for us. It gets harder when your results are hypo since the smallest adjustment can make you haywire, it's a lot easier to adjust down, not up. I would really suggest being followed by an endocrinologist for your thyroid rather than a GP unless you get one that has no problem taking direction from the endo, the GP's don't always know the little tricks that the endo's do.

Archived

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

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

  • Member Statistics

    • Total Members
      134,078
    • Most Online (within 30 mins)
      10,442
    Hmom
    Newest Member
    Hmom
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...