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


AmandaD

Recommended Posts

AmandaD Community Regular

Hi all...Checking in to say hi again...

 

Curious...I've had biopsy-diagnosed celiac for about 11 years now and it seems that my thyroid is a teeny bit off.

 

Is this common? (looks like my tsh is close to 3 or something like that...) They may put me on a pill to assist...


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



Celiac.com Sponsor (A8-M):



icelandgirl Proficient

Hi Amanda...

It seems that thyroid issues are very common with celiac. There are a lot of members of this board with Hashimotos. When my TSH is over 2 I feel hypo...so good that your Dr recognizes that a level of almost 3 isn't great. Do you have any hypo symptoms?

Have you had a full thyroid panel (TSH, free T3, Free T4, reverse T3, TPOAb and TgAb)? The last 2 are antibody tests for Hashimotos. It would be good to get them all to get a full picture of your thyroid function.

Great to see that after all these years you're doing well with celiac...gives hope to newer people!

AmandaD Community Regular

Hi there!

 

Been doing fine for a long time...occasionally glutened, but mostly okay!

 

Not too many symptoms of hypo - I don't think - she was curious about testing it because I have some anxiety...so thought it would be a good idea to recheck it all and said it's a pretty simple fix (I HOPE - eek...kind of freaked to maybe have another issue going on, but figure it's probably not that big of a deal)...?

cyclinglady Grand Master

I have had Hashi's for almost 20 years. Has it been a big deal? Not often.

The anxiety, for me, usually occurs when I am running hyper. Then I have eye muscle pain, muscle weakness, fatigue. Hypo usually presents with fatigue too, but necessitating a nap. I am that tired. I can lose hair in the outer edgs of my eyebrows too and my periods can become heavier (when I had them!). I am not sure how many people swing back and forth between hyper and hypo. Gemini is out expert on thyroid issues. I can only offer my own personal experiences.

The one hassle for the past few years is adjusting my meds. That has been frustrating for both me and my doctor.

I am running a bit hyper now, but hopefully it will improve with some adjustment in my thyroid medication. Any changes in meds should be checked every six weeks until you are stable and in the right dosage.

If my TSH were at a three, my doc would be adjusting my dosage. I am happier closer to a 1.

AmandaD Community Regular

Okay...good...I was just panicking a teeny bit about this. If you have any more comforting advice let me know :)

Gemini Experienced

Hi Amanda,

        As the others have said, thyroid issues are common to those with Celiac Disease so don't become all freaked out about this. Thyroid can be managed with thyroid hormone, which you are now taking, but if the problem is autoimmune related like Hashimoto's, then sometimes it can swing a bit between hyper and hypo and hormone supplements have to be adjusted.  Stress can affect thyroid, as can anxiety, but it can be the thyroid which causes the anxiety to begin with.  You may not notice too many symptoms but once your thyroid is in a happier place, you might realize how many symptoms you actually had, once they begin to improve.  Same as with Celiac Disease!

 

As much as I appreciate the compliments of being called an expert, there are a bunch of us on here with thyroid issues and they can lend some very useful information.  I have been a diagnosed Celiac for 10 years and have had Hashi's for much longer.  Overall, it can be managed well with just a few times when it went a bit wonky on me. I would suggest, as icelandgirl has mentioned, trying to get a full thyroid panel done as each of the tests has meaning and you need a total picture of what is going on. That is very important.  You might want to brush up on basic thyroid knowledge and any questions you have can be posted here and we'll be only too happy to help.

Sometimes.....OK.......much of the time, you can learn more from those who have it than from the medical people.  ;)   Don't sweat this......once you get your hormone levels to where they should be, you'll feel better.  I also agree that TSH should be around 1 but that can differ between people and you should also always check your actual hormone levels of T3 and T4.  They ideally want to be in the upper region of the range given by the lab.  You want to achieve optimal levels for you, not a level within the range given by the lab the doctor thinks is good for you.  Go by how you feel first and what the blood work says second.

murphy203 Rookie

They ideally want to be in the upper region of the range given by the lab.  You want to achieve optimal levels for you, not a level within the range given by the lab the doctor thinks is good for you.  Go by how you feel first and what the blood work says second.

 

This is very good advice...

 

And I am another person with Hashi (30 years) and Celiac (30 days).


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



Celiac.com Sponsor (A8-M):



AmandaD Community Regular

You guys are literally - THE BEST.

nvsmom Community Regular

I'm another Hashi's person.  It's not a real bad one.  Being hypo can cause some celiac like symptoms (tired, slow metabolism, constipation, dry skin, etc) but it is not that hard to manage.  I would say tweaking the drugs ends up requiring more patience than celiac disease, but it is not that hard.

 

I agree with the others: a TSH near a 1, free T4 and free T3 in the middle or upper end of the normal range, and TPO Ab and Tg Ab can be helpful in managing the disease, but go by how you feel first.

 

Search the forum for thyroid stuff and you'll see it come up over and over again.  You're in good company.  ;)

AmandaD Community Regular

hi...she did tsh and t4 today...i learn results tomorrow...wondering what that combo is?

Gemini Experienced

The TSH is Thyroid Stimulating Hormone and it is released by your pituitary gland.  It comes into play when it senses that thyroid hormone is either too low or too high.  I would suggest you take a look at this website: Open Original Shared Link  There is so much information on here it can make your head spin but there are different topics, relating to questions you may have on your thyroid.  Really good site for truthful information on dealing with thyroid disease.

 

Your T4 is one of the two thyroid hormones you produce.  The other is T3 and the T3 is the active form of thyroid hormone.  T4 is considered your storage level.  Your body will convert T3 to T4 and this is why most docs only prescribe T4.  It doesn't always work, for various reasons, so many people find relief with a natural dessicated hormone, which contains both T3 and T4.  This is what I take and it works well.  It is disappointing that they have only checked the T4 so I would try and broach the subject of having a full panel done.  Your antibody levels should be checked to see if you have Hashi's thyroid disease, as opposed to non-autoimmune thyroid disease. There is a difference and which hormone type you supplement with comes into play here.  But take a look at the website because it contains a wealth of knowledge about the thyroid.  You need to have some basic knowledge in order to make sure you are getting the right treatment.  You can come on here and ask if you have any specific questions about it.  We are not doctors but the people on here are very proactive with their thyroid issues and have good knowledge of it.  :)

AmandaD Community Regular

The TSH is Thyroid Stimulating Hormone and it is released by your pituitary gland.  It comes into play when it senses that thyroid hormone is either too low or too high.  I would suggest you take a look at this website: Open Original Shared Link  There is so much information on here it can make your head spin but there are different topics, relating to questions you may have on your thyroid.  Really good site for truthful information on dealing with thyroid disease.

 

Your T4 is one of the two thyroid hormones you produce.  The other is T3 and the T3 is the active form of thyroid hormone.  T4 is considered your storage level.  Your body will convert T3 to T4 and this is why most docs only prescribe T4.  It doesn't always work, for various reasons, so many people find relief with a natural dessicated hormone, which contains both T3 and T4.  This is what I take and it works well.  It is disappointing that they have only checked the T4 so I would try and broach the subject of having a full panel done.  Your antibody levels should be checked to see if you have Hashi's thyroid disease, as opposed to non-autoimmune thyroid disease. There is a difference and which hormone type you supplement with comes into play here.  But take a look at the website because it contains a wealth of knowledge about the thyroid.  You need to have some basic knowledge in order to make sure you are getting the right treatment.  You can come on here and ask if you have any specific questions about it.  We are not doctors but the people on here are very proactive with their thyroid issues and have good knowledge of it.  :)

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 Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

    2. - MogwaiStripe replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Gluten Issues and Vitamin D

    3. - Butch68 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

    4. - trents replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Taking Probiotics but Still Getting Sick After Gluten – Advice?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,217
    • Most Online (within 30 mins)
      7,748

    Sutto
    Newest Member
    Sutto
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
×
×
  • 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.