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 Recovery - Taking Innate Thyroid Response Complete Care


jennsboys23

Recommended Posts

jennsboys23 Newbie

Hi Folks,

I was diagnosed with Celiac's 3 weeks ago by my holistic doctor (thank God! 20 years and endless tests by traditional practitioners later!!). My thyroid is very under active, so my dr. put me on Innate Thyroid Response Complete Care 2x a day. Does anyone know how long it will take before my thyroid wakes up? I exercise regularly at the gym, but over the last 5 years have gained 20 lbs despite eating well and exercising.

Thank you!


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



Celiac.com Sponsor (A8-M):



ShayFL Enthusiast

Did your doctor test you for thyroid antibodies??? If no, then you need to get that done. BECAUSE there are different reasons the thyroid hypofunctions and depending on the reason, treatment can be very different.

For instance if you have Hashimotos (antibodies) then your thyroid is low because it has been attacked (auto-immune) and if you do not have enough thyroid tissue left to produce adequate hormone, then you can take all the supplements in the world and it will not work. You will need thyroid replacement (I use and recommend Armour and likely your Holistic Doc will too), but there are many options. Thyroid is not a cookie cutter disease. Each person is different and it takes a REALLY good doctor to work with you to find out what will work best for you. Also, if you have Hashimoto's taking all of that iodine in that supplement will make your situation WORSE.

You can Google everything I am telling you and I encourage you to do that. Research the thyroid. Learn about your body and this will help you make good decisions about your health.

Did he test your ADRENALS? Ferritin? Parathyroid hormones? B12? These are a MUST when considering treatment for the thyroid.

Thyroid isnt something to mess around with. It controls everything in your body and it is CRUCIAL that you find a good doctor for this. Yours might be great, but make sure he tests properly and recommends accordingly (based on your own research).

www.stopthethyroidmadess.com is a great place to start. Keep in mind that the ranges for TSH changed a long time ago, but most labs still use old ranges.

jennsboys23 Newbie
Did your doctor test you for thyroid antibodies??? If no, then you need to get that done. BECAUSE there are different reasons the thyroid hypofunctions and depending on the reason, treatment can be very different.

For instance if you have Hashimotos (antibodies) then your thyroid is low because it has been attacked (auto-immune) and if you do not have enough thyroid tissue left to produce adequate hormone, then you can take all the supplements in the world and it will not work. You will need thyroid replacement (I use and recommend Armour and likely your Holistic Doc will too), but there are many options. Thyroid is not a cookie cutter disease. Each person is different and it takes a REALLY good doctor to work with you to find out what will work best for you. Also, if you have Hashimoto's taking all of that iodine in that supplement will make your situation WORSE.

You can Google everything I am telling you and I encourage you to do that. Research the thyroid. Learn about your body and this will help you make good decisions about your health.

Did he test your ADRENALS? Ferritin? Parathyroid hormones? B12? These are a MUST when considering treatment for the thyroid.

Thyroid isnt something to mess around with. It controls everything in your body and it is CRUCIAL that you find a good doctor for this. Yours might be great, but make sure he tests properly and recommends accordingly (based on your own research).

www.stopthethyroidmadess.com is a great place to start. Keep in mind that the ranges for TSH changed a long time ago, but most labs still use old ranges.

jennsboys23 Newbie

ShayFL: Thank you so much for your response. I pulled out my test results to check the answers to your questions. I had a comprehensive metabolic panel done:. I did read it, only I just read it again and consulted WebMD, etc. so that I really understood it all:

Yes, I'm ow on B12, taking a supplement. My thyroid is low because of autoimmune deficiency caused by the gluten allergy.

My Thyroid Peroxidase (TPO) is abnormal - 256.9H; , and Ferritin is very low (37, normal is 80-100).

T3, Free & T4 are normal, but on the low end of normal

TSH is low

I do have anti-TPO antibodies.

My doctor told me that my thyroid will start to recover after about 4 weeks off gluten.

Thanks again for the info - I did check out that site yesterday and it has a tremendous amount of good info. :)

Jenn

Nancym Enthusiast

TSH is low?

TSH stands for thyroid stimulating hormone. It is secreted by the pituitary gland and says to the thyroid, "Hey buddy, I want more T-juice". When it is low then that means the brain (pituitary gland is in the brain) thinks your body is producing enough thyroid, or sometimes, if it is low enough, it can even mean you're hyperthyroid. Just depends how low.

When TSH is high (the definition of high is debatable but the range is usually around 4.5 these days) then that means the brain wants more thyroid hormone and this can indicate a hypothyroid condition.

So do you have an actual number for the TSH?

Also, sometimes the pituitary gland can get whacked and mess up too. That's why looking at the individual thyroid levels (T4, T3) becomes important.

And... if you're anemic, it can cause a lot of the same symptoms as hypothyroid.

Also, restricting calories or dieting can lead to lower T3 levels. Nothing wrong with that, IMHO. It is the bodies natural way to prevent starvation. It is actually a marker for longevity.

There are foods and hormones that can make your body not use thyroid correctly, like soy and birth control pills. Google "goitrogenic foods" and see. For most people, it isn't a problem but if your thyroid is marginal it can be an issue.

ShayFL Enthusiast

Yes, Low TSH with hypothyroid indicates the pituitary is not working properly.

I am gluten-free 5+ months now and my Thyroid has not shown any indication of healing. With hashi's it isnt always possible. I do not say this to discourage you. You may be one of the lucky ones and I hope you are. I am telling you this, because it should be monitored very carefully.

You have antibodies, so you have Hashi's. Most doctors find that Hashi's patients need replacement hormone. Make sure you keep your doctor on his toes if you do not start feeling better within that 4 month period.

I am not fond of the Endocrinologists in Tampa, but you should see one. There are other tests that should be performed. Your thyroid should have an ultrasound to look for nodules and cancer.

My Mom had Hashi's and Cancer and did not know it until her thyroid was almost completely eaten away. Her bloodwork kept coming back normal. But she felt like total crap. Finally she convinced her doctor to do an ultrasound and that is when they found the cancer. Her Hashi's was dx post surgery. She NEVER had any antibodies show up. Why? Antibodies are generally testes as IgA. We (my family) appear to have very low levels of IgA.

Tests are tests. But some are very useful. Ultrasound is non-invasive and painless. I recommend getting one.

Please be careful with thyroid. It can cause a lot of misery, but can be treated effectively with a good doctor.

georgie Enthusiast

I tend to agree with ShayL on this. Hashimotos is Hashimotos and another autoimmune disease as well as your Celiac. If you neglect the symptoms then the eventual damage can be serious - even cancer. I have not heard of a gluten-free diet curing Hashimotos although it may be possible.

I was dx with Hashis with a low # of Antibodies but my Dr was aware of how these tests can vary. She immediately ordered the ultrasound and that is what showed the nodules and damage. After a year of Armour Thyroid I had a repeat ultrasound and all nodules had vanished. I feel I was very lucky to be dx when I was. I also had Hashimotos a long time - but Dr after Dr kept sending me away saying my Thyroid was normal cos my TSH was low.

I now find it is likely that I am HypoPituitary. I have had extra blood tests which suggest this and also a brain MRI ( should have been pituitary MRI ) to check for tumours.

Gaining weight as you complain of - can be low thyroid or it can be low Growth Hormone ... Both are switched on to work by the Pituitary and if the Pit is damaged - you start to get a systemic failure of all your hormones with blood tests looking atypical in places ( low TSH for eg). I have been told that GH is usually the first hormone to fail with HypoPit and usually the last to be dx. I also know of many that start with autoimmune Hashimotos Thyroid and then become HypoPit low Thyroid later.

Good luck with finding an Endo though. I have found them all to be clueless - waiting for me to collapse before considering a dx. My Dr has taken over now and is treating me so I can live my life now without suffering more years of misery.


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



Celiac.com Sponsor (A8-M):



ShayFL Enthusiast

Yes, honestly, if you can get your regular doctor to do the ultrasound and avoid the Endo, this is best.

One thing to keep in mind is that some become hypoPit because of tumors that damages the Pituitary that secrete GH.

A lot of folks with hypoPit have issues with their thyroid, adrenals and sex hormones.

Arent these bodies so complicated......

GFinDC Veteran

I have been reading on the Medhelp.org site that selenium is thought to reduce thyroid antibodies for a while up to 9 months. So I am trying that at 100 mcg daily for now. Also doing some L-carniteine and Alpha lipoic Acid. Just started all these so not sure if they are a real help or not. I seem to be able to sleep better so far, but it's only been a few days.

ShayFL Enthusiast

ALA raised my blood sugar, so monitor yourself.

georgie Enthusiast
I have been reading on the Medhelp.org site that selenium is thought to reduce thyroid antibodies for a while up to 9 months. So I am trying that at 100 mcg daily for now.

If you have Thyroid Antibodies ( ie Hashimotos or Graves) then you really should be monitored by a Dr. Armour Thyroid is the best med I have found to reduce Antibodies and believe me - over the years I had tried everything I could as my Dr would not. Since changing Drs the problem was solved :lol:

jennsboys23 Newbie

I looked at my score again - I think I read the TSH incorrectly - it's 3.3 which is within normal range.

I went to the Nutritionist who works with my holistic dr - she put me on a completely natural diet (no more low fat or fat free anything!), lots of seeds, nuts, whey, flax, cod liver oil (retch!) and OHMYGOD real fat! She promises that I will lose weight (I work out regularly) and I trust her. Gluten I can live without - but thank goodness I can still eat peanut butter!

georgie Enthusiast
I looked at my score again - I think I read the TSH incorrectly - it's 3.3 which is within normal range.

Sorry to say but TSH of 3.3 with TPO Antibodies of 259.6High ......is Hashimotos Thyroid Disease. You need treatment for that .... :( A normal TSH is around 1. And Thyroid Antibodies overrule the TSH results.....you need those Antibodies brought back down to zero.

ShayFL Enthusiast

YOU ARE HYPOTHYROID. PERIOD.

I was severely hypothryoid with a TSH at 2.8. I dont feel good unless my TSH is below 0. It is currently .008 and I feel really good. Everyone is different with regard to what TSH makes them feel well. But the American Association of Clinical Endocrinologist ALL agree that 3.00 is the cut off. And there is talk of them lowering it even more as more data comes in. I predict at some point in the future it will be dropped to 2. My hope is that someday it is eliminated all together.

You have Hashimotos Disease. You MUST get those antibodies down or eventually you could end up like my Mom (no thyroid left). And she developed thyroid cancer as a result of not getting it treated in time. I fear that if you are not being treated by a knowledgeable doctor, you can do yourself great harm.

According to the American Association of Clinical Endocrinologists

(AACE), 1 in 10 Americans - more than the number of Americans with

diabetes and cancer combined - suffer from thyroid disease, yet as

many as half remain undiagnosed. In order to counteract this lack of

awareness and educate the public about the prevalence of thyroid

disease, diagnosis, and treatment, in January, AACE continued its

annual thyroid awareness campaign. The 2003 campaign, Hiding in Plain

Sight: Thyroid Undercover, launched as part of the January 2003

Thyroid Awareness Month.

According to the AACE, until November 2002, doctors had relied on a

normal TSH level ranging from 0.5 to 5.0 to diagnose and treat

patients with a thyroid disorder who tested outside the boundaries of

that range. The new guidelines narrow the range for acceptable thyroid

function, and AACE is now encouraging doctors to consider treatment

for patients who test outside the boundaries of a narrower margin

based on a target TSH level of 0.3 to 3.04. AACE believes the new

range will result in proper diagnosis for millions of Americans who

suffer from a mild thyroid disorder, but have gone untreated until

now. AACE estimates that the new guidelines double the number of

people who have abnormal thyroid function, bringing the total to 27

million.

AACE made the decision to narrow the range because of data suggesting

many people may have low-level thyroid problems that could be improved

with treatment and a narrower TSH range will give doctors reason to

more carefully consider those patients.

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. - trents replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

    2. - Scott Adams replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

    3. - Aretaeus Cappadocia replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      4

      Dried Chickpeas

    4. - ainsleydale1700 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

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

    • Total Members
      133,434
    • Most Online (within 30 mins)
      7,748

    LexiBusch
    Newest Member
    LexiBusch
    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

    • trents
      Welcome to the celiac.com community, @ainsleydale1700! First, it is very unlikely, given your genetic results, that you have celiac disease. But it is not a slam dunk. Second, there are some other reasons besides having celiac disease that your blood antibody testing was positive. There are some diseases, some medications and even (for some people) some foods (dairy, the protein "casein") that can cause elevated celiac blood antibody test scores. Usually, the other causes don't produce marginally high test scores and not super high ones. Having said that, by far, the most common reason for elevated tTG-IGA celiac antibody test scores (this is the most common test ordered by doctors when checking for celiac disease) is celiac disease itself. Please post back and list all celiac blood antibody tests that were done with their scores and with their reference ranges. Without the reference ranges for negative vs. positive we can't tell much because they vary from lab to lab. Third, and this is an terrible bum steer by your doc, for the biopsy results to be valid, you need to have been eating generous amounts of gluten up to the day of the procedure for several weeks.  Having said all that, it sounds most likely that you have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. The two share many common symptoms but NCGS is not autoimmune in nature and doesn't damage the lining of the small bowel. What symptoms do you have? Do you have any blood work that is out of norm like iron deficiency that would suggest celiac disease?
    • ainsleydale1700
    • Scott Adams
      HLA testing can definitely be confusing. Classic celiac disease risk is most strongly associated with having the full HLA-DQ2 or HLA-DQ8 heterodimer, which requires specific DQA1 and DQB1 genes working together. Your report shows you are negative for the common DQ2 and DQ8 combinations, but positive for DQB102, which is one component of the DQ2 pair. On its own, DQB102 does not usually form the full DQ2 molecule most strongly linked to celiac disease, which is likely why your doctor said you do not carry the typical “celiac genes.” However, genetics are only part of the picture. A negative gene test makes celiac disease much less likely, but not absolutely impossible in rare cases. More importantly, both antibody testing and biopsy are only reliable when someone is actively eating gluten; being gluten-free for four years before testing can cause both bloodwork and intestinal biopsy to appear falsely negative. Given your positive antibodies and ongoing symptoms, it may be reasonable to seek clarification from a gastroenterologist experienced in celiac disease about whether proper gluten exposure was done before testing and whether additional evaluation is needed.
    • Aretaeus Cappadocia
      I agree with your post and have had similar experiences. I'm commenting to add the suggestion of also using nutritional yeast as a supplement. It's a rich source of B vitamins and other nutrients, and some brands are further supplemented with additional B12. I sprinkle a modest amount in a variety of savory recipes.
    • ainsleydale1700
      Hi, could someone help me understand the result of my gene test? DQ2 (DQA1 0501/0505,DQB1 02XX): Negative DQ8 (DQA1 03XX,DQB1 0302): Negative The patient is positive for DQB1*02, one half of the DQ2 heterodimer.  The doctor said I don't have Celiac genes.  I asked him to clarify about my positive DQB1*02, and he said it's a gene unrelated to Celiac.  I have all the symptoms and my bloodwork is positive for antibodies, despite being on a gluten-free diet for the past 4 years.  He also did a biopsy but told me to continue a gluten-free diet and not eat gluten before the biopsy.  Based on the gene test and biopsy (which came back negative) he ruled out Celiac, leaving me very confused.    
×
×
  • 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.