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. - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

    2. - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

    3. - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

    4. - Scott Adams replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

    5. - Scott Adams replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Reverse Osmosis (RO) Water

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

    • Total Members
      133,581
    • Most Online (within 30 mins)
      7,748

    MaggieSc
    Newest Member
    MaggieSc
    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

    • Jane02
      Sorry, I just realized how old this thread is and only read the initial post from 2021. I'll have to catch up on the comments in this thread. 
    • Jane02
      Sorry to hear you're going through such a hard time. It would be worth looking into MCAS/histamine issues and also Long Covid. Perhaps there is something occurring in addition to celiac disease. It would be worth ruling out micronutrient deficiencies such as the b vitamins (B12, folate, B1, etc), vit D, and ferritin (iron stores). 
    • knitty kitty
      This sounds very similar to the neuropathic pain I experienced with type two diabetes.  Gloves and boots pattern of neuropathy is common with deficiencies in Cobalamine B12 (especially the pain in the big toe), Niacin B3, and Pyridoxine B6.  These are vitamins frequently found to be low in people with pre-diabetes and diabetes.  Remember that blood tests for vitamin levels is terribly inaccurate.  You can have vitamin deficiencies before there are any changes in blood levels.  You can have "normal" serum levels, but be deficient inside organs and tissues where the vitamins are actually utilized.  The blood is a transportation system, moving vitamins absorbed in the intestines to organs and tissues.  Just because there's trucks on the highway doesn't mean that the warehouses are full.  The body will drain organs and tissues of their stored vitamins and send them via the bloodstream to important organs like the brain and heart.  Meanwhile, the organs and tissues are depleted and function less well.   Eating a diet high in simple carbohydrates can spike blood sugar after meals.  Eating a diet high in carbohydrates consistently over time can cause worsening of symptoms.  Thiamine and other B vitamins like Niacin B3 and Pyridoxine B6, (which I noticed you are not supplementing), are needed to turn carbs, proteins and fats into energy for the body to use.  Alcohol consumption can lower blood sugar levels, and hence, alleviate the neuropathic pain.  Alcohol destroys many B vitamins, especially Pyridoxine, Thiamine and Niacin.  With alcohol consumption, blood glucose is turned into fat, stored in the liver or abdomen, then burned for fuel, thus lowering blood glucose levels.  With the cessation of alcohol and continued high carb diet, the blood glucose levels rise again over time, resulting in worsening neuropathy.   Heavy exercise can also further delete B vitamins.  Thiamine and Niacin work in balance with each other.  Sort of like a teeter-totter, thiamine is used to produce energy and Niacin is then used to reset the cycle for thiamine one used again to produce energy.  If there's no Niacin, then the energy production cycle can't reset.  Niacin is important in regulating electrolytes for nerve impulse conduction.  Electrolyte imbalance can cause neuropathic pain.   Talk to your doctors about testing for Type Two diabetes or pre-diabetes beyond an A1C test since alcohol consumption can lower A1C giving inaccurate results. Talk to your doctors about supplementing with ALL eight B vitamins, and correcting deficiencies in Pyridoxine, Niacin, and B12.  Hope this helps! Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ P. S.  Get checked for Vitamin C deficiency, aka Scurvy.  People with Diabetes and those who consume alcohol are often low in Vitamin C which can contribute to peripheral neuropathy.
    • Scott Adams
      I’m really sorry you’re dealing with this—chronic neuropathic or nociplastic pain can be incredibly frustrating, especially when testing shows no nerve damage. It’s important to clarify for readers that this type of central sensitization pain is not the same thing as ongoing gluten exposure, particularly when labs, biopsy, and nutritional status are normal. A stocking/glove pattern with normal nerve density points toward a pain-processing disorder rather than active celiac-related injury. Alcohol temporarily dampening symptoms likely reflects its central nervous system depressant effects, not treatment of an underlying gluten issue—and high-dose alcohol is dangerous and not a safe or sustainable strategy. Seeing a pain specialist is absolutely the right next step, and we encourage members to work closely with neurology and pain management rather than assuming hidden gluten exposure when objective testing does not support it.
    • Scott Adams
      There is no credible scientific evidence that standard water filters contain gluten or pose a gluten exposure risk. Gluten is a food protein from wheat, barley, or rye—it is not used in activated carbon filtration in any meaningful way, and refrigerator or pitcher filters are not designed with food-based binders that would leach gluten into water. AI-generated search summaries are not authoritative sources, and they often speculate without documentation. Major manufacturers design filters for water purification, not food processing, and gluten contamination from a water filter would be extraordinarily unlikely. For people with celiac disease, properly functioning municipal, bottled, filtered, or distilled water is considered gluten-free.
×
×
  • 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.