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

Hypo To Hyperthyroidism?

Jennifer2

By Jennifer2
in Related Issues & Disorders

Recommended Posts

Jennifer2 Explorer
Jennifer2
Posted

Hi guys

I was dx with hypothyroid back in 2000. I'd been stable on my meds for the last 5 yrs or so. I get tested once a year, and my TSH levels had always been okay with no adjustments in dose needed.

I was dx with celiac and started gluten-free diet back in July and at the same checkup, my TSH bloodwork showed that it had gone pretty high (hypothyroid), so they increased my thyroid meds. I went back to get another thyroid test 6-8 weeks later, and this time the TSH was really low (hyperthyroid) At that time they had me alternating my old dose (that I went too high on and the new dose which I was too low on). I went back again 6-8 weeks later and I'm still hyper, with little to no improvement in the TSH number.

I'm supposed to go back to the doctor in a week or so to discuss it (instead of just a lower dose prescription which is weird) but I'm just wondering if anyone else has had this happen?

Thanks

Jennifer

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

Celiac.com Sponsor (A8-M):


Roda Rising Star
Roda
Posted

Do you have hashimotos thyroiditis by chance? It can alternate between the two, usually is hypo though. The other possibility is that you are now absorbing your meds better and it is causing it to be hyper. I have had my meds lowered once since going gluten free. That was the first time ever (with the exception of post partum) that has ever happened. My dose is stable now. I am on 112 mcg levothyroxine once a day and 5 mcg cytomel twice a day.

Jennifer2 Explorer
Jennifer2
Posted
  • Author

I don't know what "kind" of hypothyroidism I have. It was picked up on a routine blood panel back in 2000 and other than routine TSH tests no one has ever looked into it more. Is there a way to tell if it's hashimotos-although I believe that is the most common type of hypothyroidism, so odds are it is.

I had been on 150mcg levothroid for several years. When I moved and changed Drs they switched it to 150mcg levothyroxin about 2 yrs ago and didn't notice any difference between the 2 brands.

When I was Dx with celiac my TSH was up around 15 so they increased me to 175mcg levothyroxin, which was too much-TSH dropped to ~0.1. Now I'm alternating between 150 and 175 every other day and TSH is still ~0.1.

If it is something like hashimotos causing bouts of hyperthyroidism, wouldn't I have seen it before now?

Hopefully it is just that my meds are being absorbed more and I just need to lower my dosage. Although, would it really happen that fast, I've only been gluten-free for 4mo now?

The sad thing is, I don't think I've felt this good in a very long time! Hopefully that has more to do with going gluten-free to treat celiac than hyperthyroidism!!

Thanks

Jennifer

Roda Rising Star
Roda
Posted

You need to see a good endocrinologist who will order a TSH, free T3, free T4 and thyroid antibody tests. My last TSH was 0.81 (0.3 - 3.04), free T3 4.20 (2.50 - 3.90), and free T4 1.17 (0.58 - 1.64). I am not having any hyper symptoms at all and my endocrinologist is happy where I am at. The thyroid antibody tests will tell you if it is hashimotos or not. I have been taking thyroid meds since Feb. 2000 and had the antibody tests done while I was pregnant with my first son that same year that confirmed it was hashimotos. The free T3 & free T4 will let the doctor how much hormone is actually circulating. My endo looks at these more than my TSH. When I had my levothyroxine lowered I was having symptoms and the TSH was around 0.08 and my free T3 was alot more elevated. Are you having hyper symptoms like rapid heart rate, shortness of breath, hair falling out or heat intolerance?

Gemini Experienced
Gemini
Posted
The sad thing is, I don't think I've felt this good in a very long time! Hopefully that has more to do with going gluten-free to treat celiac than hyperthyroidism!!

Jennifer

The sad thing is that you are probably not hyperthyroid, unless you are having symptoms of it. Many people, including myself, keep their TSH really suppressed and have T3 and T4 levels in the upper ranges so they feel normal and good. Many docotrs freak out over this and only treat using blood work as a gauge....wrong thing to do! If you feel good and are having no symptoms of hyper thyroid, then you may want to consider keeping your dosage at these levels. They may be right for you.

I had the same experience as you did and have learned over the years to trust what my body is saying and not pay too much attention to how mainstream medicine treats thyroid disease. They generally under treat and then patients walk around feeling draggy. There is a reason you feel so good...partly due to the gluten-free diet and having the correct amount of thyroid hormone also makes a HUGE difference.

Jennifer2 Explorer
Jennifer2
Posted
  • Author

Thanks guys!

I'm going to the Dr on Monday, so I'll suggest the T3/T4/antibody tests. I don't think we have an endocrinologist in my town, I'd have to drive about an hr to go to one.

I have to say, I've been very impressed by this doc so far. When I went in for my last annual check up (first time I saw her), she asked all sorts of questions about how I was feeling. When I mentioned that I'd had been having lots of GI problems, her first question was if anyone in my family had celiac. I said "what?". She ordered lots of tests looking for parasites, antibiotic causes, and lots of blood tests (about 5 tubes worth), obviously celiac came back positive.

As far as symptoms, I don't think I've had any hyper symptoms. I even had a pretty extensive work physical about 2 weeks ago and my heart rate and BP were both in the low end of the normal range. I also had to do the lung function test and tested in the upper percentile for my age range. My TSH was low that time also. I've lost a few pounds, but I've been trying and it's a healthy weight loss of about 1lb per week. (All these diseases with weight loss as a symptom, how come I never get THAT symptom :lol: )

Hopefully, the fact that she wants me to come in, instead of just lowering my dose, suggests to me that she has something else in mind.

Jennifer

Roda Rising Star
Roda
Posted
Thanks guys!

I'm going to the Dr on Monday, so I'll suggest the T3/T4/antibody tests. I don't think we have an endocrinologist in my town, I'd have to drive about an hr to go to one.

Don't forget that you need to ask for free T3 and free T4. If necessary, it would be worth the hour drive for a good endocrinologist. I also agree with Gemini. The other tests can help you to determine this along with how you are feeling.

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing

  • 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. Kimmy88
      - Kimmy88 commented on Scott Adams's article in Winter 2026 Issue
      8

      Can You Really Trust Gluten-Free Menus? What Every Celiac Needs to Know Before Eating Out

      Thanks this is helpful!
    2. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Fermented foods, Kefir, Kombucha?

      very interesting thanks for the info
    3. Florence Lillian
      - Florence Lillian replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

      More cookie recipes ...thanks so much for the heads-up Scott. One can never have too many. Cheers, Florence.
    4. Russ H
      - Russ H replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting...
    5. cristiana
      - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

      Hi @Charlie1946 You are very welcome. I agree wholeheartedly with @knitty kitty: "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis. I noticed it after standing in cold wind, affecting...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,916
    • Most Online (within 30 mins)
      7,748
    Ykat
    Newest Member
    Ykat
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
    • Florence Lillian
      gluten free cookie recipes

      By Florence Lillian · Posted

      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Severe severe mouth pain

      By Russ H · Posted

      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
    • cristiana
      Severe severe mouth pain

      By cristiana · Posted

      Hi @Charlie1946 You are very welcome.   I agree wholeheartedly with @knitty kitty:  "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis.  I noticed it after standing in cold wind, affecting  me after the event - for example, the evening after standing outside, I would feel either tingling or stabbing pain in my cheek.   I found using a neck roll seemed to help, reducing caffeine, making sure I was well-hydrated, taking B12 and C vitamins and magnesium.  Then when the lockdowns came and I was using a facemask I realised that this pain was almost entirely eliminated by keeping the wind off my face.  I think looking back I was suffering from a type of nerve pain/damage.  At the time read that coeliacs can suffer from nerve damage caused by nutritional deficiencies and inflammation, and there was hope that as bodywide healing took place, following the adoption of a strict gluten free diet and addressing nutritional deficiencies, recovery was possible.   During this time, I used to spend a lot of time outdoors with my then young children, who would be playing in the park, and I'd be sheltering my face with an upturned coat collar, trying to stay our of the cold wind!  It was during this time a number of people with a condition called Trigeminal Neuralgia came up to me and introduced themselves, which looking back was nothing short of miraculous as I live in a pretty sparsely populated rural community and it is quite a rare condition.   I met a number of non-coeliacs who had suffered with this issue  and all bar one found relief in taking medication like amitriptyline which are type of tricyclic anti-depressant.   They were not depressed, here their doctors had prescribed the drugs as pain killers to address nerve pain, hence I mention here.  Nerve pain caused by shingles is often treated with this type of medication in the UK too, so it is definitely worth bearing in mind if standard pain killers like aspirin aren't working. PS  How to make a neck roll with a towel: https://www.painreliefwellness.com.au/2017/10/18/cervical-neck-roll/#:~:text=1.,Very simple. 
    • Scott Adams
      gluten free cookie recipes

      By Scott Adams · Posted

      We just added a ton of new recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-cookie-recipes/
×
×
  • 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.