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

Shrinking Thyroid

nvsmom

By nvsmom
in Related Issues & Disorders

Recommended Posts

nvsmom Community Regular
nvsmom
Posted

Anyone else have a shrinking thyroid?  I had and ultrasound about 2 years ago that showed and abnormal thyroid, but in a normal abnormal sort of way.  I recently had a second scan which showed typical abnormalities again, but this time it also indicated that my thyroid was atrophying.... Well, at least one part of me is shrinking.  LOL

 

My first thought was that maybe it was being caused by my natural desiccated thyroid medication.  Maybe I am medicating myself so well (my TSH is suppressed) that my thyroid started to shrink?  I did some quick searches and that doesn't seem to happen.

 

Then I stumbled upon Ord's thyroiditis.  It's basically the same as Hashi's, just less common, and does the opposite of causing goitres.  Still hypothyroidism.  

 

Anyone else have an atrophying thyroid?

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

Yep, me!

Since going gluten-free two years ago, my thyroid is size is now normal and I have no nodules. I was diagnosed with Hashi's almost 20 years ago based on an enlarged thyroid (felt during an exam by two doctors), two nodules, and confirmed with an antibodies test that was over 4,000! Antibodies went up and down over the years. I had wild swings the year before and after my celiac disease diagnosis which made dosing difficult for me and my doctor. Being hyper was worse that being hypo! Menopause occurred at that same time unfortunately, so I was a hormonal mess!

I have not had the antibodies tested since my celiac disease dx. I did ask for a physical test just two weeks ago during a woman's well-check and received the "It's normal in size."

I have been running hyper .04 TSH, but I do not think it was a thyroid swing. Just need to reduce my meds. Will get retested in about two weeks. I was not able to fall asleep and was feeling weak when running. I feel best close to a 1 or 2 (TSH). Unfortunately, I am feeling fatigue as in "need to nap" which means I am hypo. I was on a wacky dosage of Armour taking 120 three days a week and then 90mg the rest of the week. I think with healing from celiac disease or just my thyroid is functioning better, this dosage schedule is no longer working for me. I am hoping for a105 mg dosage (combo 90mg with 15mg) daily. We will see! In the meantime, I am taking 90mg daily and drinking lots of coffee in the afternoon!

mamaw Community Regular
mamaw
Posted

My thyroid is now shrinked down to nothing , hard to pinpoint on a scan. But I did have RAI in 07 but scan tech said even tho that Rai was done thyroid's don't disappear... Plus they still check by scan once a year to see if the nodule is still there or growing. Doc claims even tho thyroid is truly gone one can still develop nodules.... I'm not a thyroid expert so I just listen to what he says!!!!

nvsmom Community Regular
nvsmom
Posted
  • Author

Yep, me!

Since going gluten-free two years ago, my thyroid is size is now normal and I have no nodules. I was diagnosed with Hashi's almost 20 years ago based on an enlarged thyroid (felt during an exam by two doctors), two nodules, and confirmed with an antibodies test that was over 4,000! Antibodies went up and down over the years. I had wild swings the year before and after my celiac disease diagnosis which made dosing difficult for me and my doctor. Being hyper was worse that being hypo! Menopause occurred at that same time unfortunately, so I was a hormonal mess!

I have not had the antibodies tested since my celiac disease dx. I did ask for a physical test just two weeks ago during a woman's well-check and received the "It's normal in size."

I have been running hyper .04 TSH, but I do not think it was a thyroid swing. Just need to reduce my meds. Will get retested in about two weeks. I was not able to fall asleep and was feeling weak when running. I feel best close to a 1 or 2 (TSH). Unfortunately, I am feeling fatigue as in "need to nap" which means I am hypo. I was on a wacky dosage of Armour taking 120 three days a week and then 90mg the rest of the week. I think with healing from celiac disease or just my thyroid is functioning better, this dosage schedule is no longer working for me. I am hoping for a105 mg dosage (combo 90mg with 15mg) daily. We will see! In the meantime, I am taking 90mg daily and drinking lots of coffee in the afternoon!

 

Huh!  Your thyroid put you through the ringer, and during menopause too... That's just cruel!  ;)

 

My thyroid was kinder to me.  As far as I know, it's only ever run hypo, my thyroid has never been enlarged (just lumpy like a grape clusters), and I have never have elevated TPO Ab.  

 

My TSH is also running "hyper" looking at 0.01 but my FT4 is a low normal, and my FT3 is close to middle of normal.  If anything, I feel just a tad hypo, but not enough to change things.  I take the T3 and T4 mix though so that pushes the TSH down.  

 

It's funny how everyone is so different.  When my TSH is between a 1 and 2, I don't feel very good.  LOL

 

Good luck with your next dosage.  I hope it works like a charm for you.  :)

 

My thyroid is now shrinked down to nothing , hard to pinpoint on a scan. But I did have RAI in 07 but scan tech said even tho that Rai was done thyroid's don't disappear... Plus they still check by scan once a year to see if the nodule is still there or growing. Doc claims even tho thyroid is truly gone one can still develop nodules.... I'm not a thyroid expert so I just listen to what he says!!!!

 

Wow.  You too?  Maybe this shrinkage is more common than I thought...

 

Why aren't they calling it Ord's disease?  Most people refer to thyroid problems as Hashimoto's.... Oh no...  Am I going to have to admit that my old doctor (not my favourite person) was actually correct to diagnose me with thyroiditis rather than Hashimoto's? Nooooooooooo!

;)

Gemini Experienced
Gemini
Posted

You guys are freaking me out! I have never had an ultrasound or scan of any kind for my thyroid as my blood work told the story of Hashi's pretty well and I have been supplementing ever since. Every time the doc feels my thyroid, she doesn't say much so I take that as meaning they can't feel nodules or anything scary. You know they would be sending me for some test if something didn't feel right.

I have never heard of a shrinking thyroid or Ord's Disease.........time to do some homework. Maybe because you supplement with natural thyroid hormone and are getting everything you need, your thyroid doesn't have to do much work? After all, muscles atrophy when not used........that's all my brain can come up with right now.

nvsmom Community Regular
nvsmom
Posted
  • Author

LOL  :P

 

From what I am now reading, it sounds like Ord's thyroiditis and Hashimoto's thyroiditis are basically two sides of the same (hypothyroid) coin - one has atrophy (Ord) and one has hyperatrophy (Hashi's).  It sounds like they are just different classifications of the same disease (thyroiditis) by researchers who wanted to name something after themselves.  ;)

 

This article was interesting: Open Original Shared Link

 

Conclusions: In primary autoimmune hypothyroidism, thyroid volume follows a normal distribution. Cases with thyroid atrophy and goiter are only extremes within this distribution and do not represent separate disorders. However, patients with low vs. high thyroid volume differ with respects to several characteristics.

In patients with primary autoimmune hypothyroidism, thyroid atrophy and goiter do not represent separate disorders.

It looks like Ord's and Hashi's are the same.   :rolleyes:  :huh:

mamaw Community Regular
mamaw
Posted

The doctors didn't call my issues anything but thyroid disease. Back in 07 I couldn't even get lab work... I think at first I was on PHT ( not sure) too long ago.. then for sure in early spring I was put on cytomel... we then took a summer vacation & drove to Alaska from Pa.... I felt wonderful , lost a boatload of weight , happy & all was fine. Came back home & got very ill.. ended up in hospital in intensive care for two weeks with A-Fib.... Then it was decided I needed RAI to save me...they told hubby I would die without it so he panicked & here I am today ... thyroidless... The very worse thing I ever had done....Now days, I present with both hyper & hypo....it is a constent battle...

Daughter has hashi & celiac...lots of bone loss....40's

My thyroid didn't start to shrink away until about 4 years ago...When they did RAI they killed it to nothing.. there thoughts were when a tiny piece still works & they are treating with a drug , it causes big problems with regulating the gland... a lot of ups & downs....

I do sometimes wonder what I truly had hashi or what...I'm fairly sure it wasn't but who knows.I have long since found another doc...actually been through three or four.. This guy at least listens to me & we have a mutual understanding.... I now take a whole glandular thyroid med which I love.....

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

Celiac.com Sponsor (A8-M):


nvsmom Community Regular
nvsmom
Posted
  • Author

That's a tough one.  :(

 

My oldest appears to have subclinical hypothyroidism.  I hope, if he does, that his disease goes more like mine and doesn't try him too much.

Gemini Experienced
Gemini
Posted

LOL  :P

 

From what I am now reading, it sounds like Ord's thyroiditis and Hashimoto's thyroiditis are basically two sides of the same (hypothyroid) coin - one has atrophy (Ord) and one has hyperatrophy (Hashi's).  It sounds like they are just different classifications of the same disease (thyroiditis) by researchers who wanted to name something after themselves.   ;)

 

This article was interesting: Open Original Shared Link

 

Conclusions: In primary autoimmune hypothyroidism, thyroid volume follows a normal distribution. Cases with thyroid atrophy and goiter are only extremes within this distribution and do not represent separate disorders. However, patients with low vs. high thyroid volume differ with respects to several characteristics.

In patients with primary autoimmune hypothyroidism, thyroid atrophy and goiter do not represent separate disorders.

It looks like Ord's and Hashi's are the same.   :rolleyes:  :huh:

Thanks, Nicole, for the link! 

 

 

It sounds like they are just different classifications of the same disease (thyroiditis) by researchers who wanted to name something after themselves.

This sounds about right....... ^_^

nvsmom Community Regular
nvsmom
Posted
  • Author

I saw my doctor who prescribed the NDT and he said this was pretty normal... My family doctor on the other hand booked me and emergency endocrinology appointment.  LOL  :rolleyes:

Gemini Experienced
Gemini
Posted

I saw my doctor who prescribed the NDT and he said this was pretty normal... My family doctor on the other hand booked me and emergency endocrinology appointment.  LOL  :rolleyes:

There you go!  Such synchronicity in the medical field!  :lol:   Let us know how that goes!

nvsmom Community Regular
nvsmom
Posted
  • Author

There you go!  Such synchronicity in the medical field!  :lol:   Let us know how that goes!

LOL    Now remember, this IS Canada we're talking about, so my emergency endocrinology appointment is in late July.   ;)

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. trents
      - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    2. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      how much gluten do I need to eat before blood tests?

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in...
    3. SilkieFairy
      - SilkieFairy posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash...
    4. catnapt
      - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

      learned I had a high PTH level in 2022 suspected to be due to low vit D got my vit D level up a bit but still have high PTH I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption
    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      how much gluten do I need to eat before blood tests?

      I am on day 13 of eating gluten and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,322
    • Most Online (within 30 mins)
      7,748
    avery144
    Newest Member
    avery144
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      IBS-D vs Celiac

      By trents · Posted

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school.  This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4.  Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with  DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac.  I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am!   
    • catnapt
      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

      By catnapt · Posted

      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      I am on day 13 of eating gluten  and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone and/or the renal calcium leak.    I have spent the past 15 years working hard to improve my health. I lost 50lbs, got off handfuls of medications, lowered my cholesterol to enviable levels, and in spite of having end stage osteoarthritis in both knees, with a good diet and keeping active I have NO pain in those joints- til now.  Almost all of my joints hurt now I feel like someone has repeatedly punched me all over my torso- even my ribs hurt- I have nausea, gas, bloating, headache, mood swings, irritability, horrid flatulence (afraid to leave the house or be in any enclosed spaces with other people- the smell would knock them off their feet) I was so sure that I wanted a firm diagnosis but now- I'm asking myself is THIS worth it? esp over the past 2 yrs I have been feeling better and better the more I adjusted my diet to exclude highly refined grains and processed foods. I didn't purposely avoid gluten, but it just happened that not eating gluten has made me feel better.   I don't know what I would have to gain by getting a definitive diagnosis. I think possibly the only advantage to a DX would be that I could insist on gluten-free foods in settings where I am unable to have access to foods of my choice (hospital, rehab, nursing home)  and maybe having a medical reason to see a dietician?   please let me know if it's reasonable to just go back to the way I was eating.  Actually I do plan to buy certified gluten-free oats as that is the only grain I consume (and really like) so there will be some minor tweaks I hope and pray that I heal quickly from any possible damage that may have been done from 13 days of eating gluten.    
×
×
  • 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.