Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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? Or Should We Be Looking At Other Things?


ohsotired

Recommended Posts

ohsotired Enthusiast

Hey y'all, I could really use your help here.

I'm approximately 8 weeks into the gluten-free diet (and yes, I know that's not very long) and still have a number of troubling symptoms plaguing me.

  • Fatigue - this is a little better, but I still need to nap several times a week after work, or sleep a full day on the weekend to feel even a little improvement
  • Extremely dry, itchy, thin skin - to the point of being scaly like a snake even with excessive moisturizing
  • Always cold, especially in my hands and feet (have not noticed significant color changes in fingers or toes, but sometimes toes go slightly bluish-purple)
  • Night sweats - to the point of having to get up and change night clothes, pillow case, and sheets
  • Brain fog - not quite as bad as previously, but still troublesome. Sometimes English seems like a foreign language, just because I can't think of the word for something.
  • Joint pain, stiffness, and lessened strength in hands
  • ZERO libido. Not just low, but zero. Zilch. Nada.

I had some blood work done a few weeks ago and was told 'all normal'. I just got my hands on the paper copy today.

Here's what was tested and the results:

  • Anti-DNA (DS) Ab Qn - 0
  • Antinuclear Antibodies Direct - 57 (Neg <100)
  • Rheumatoid Arthritis Factor - 0
  • TSH - 2.012 (Ref .45 - 4.5)
  • Thyroxine (T4) - 6.6 (Ref 4.5 - 12.0)
  • T3 Uptake - 33 (Ref 24 - 39%)
  • Free Thyroxine Index - 2.2 (Ref 1.2 - 4.9)
  • Sed Rate - 2 (Ref 0 - 20)
  • C Reactive Protein - .8 (Ref 0 - 4.9)

When I went in for this visit, I was thinking thyroid, esp. since there is a family history of it. She mentioned also testing for Lupus and RA, which thankfully appear to be negative.

I know I remember reading that the thyroid reference ranges have changed, and I think these are the old ranges they're using, but I couldn't find the current ranges (I searched, but I'm brain dead tonight). What say the experts? Is this something I should pursue with the doc, or should we be looking at something else? Or should I leave well enough alone? ;) I just know I still don't feel quite right, even though my gut is pretty happy these days (YAY gluten free diet!).

I want to schedule a follow up visit, but don't know if I should just say "Now what?" or if there's something else I need to be pursuing.

Any thoughts y'all have would be much appreciated!


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



Celiac.com Sponsor (A8-M):



Mother of Jibril Enthusiast

Your thyroid levels are technically "normal," but a bit low (especially the T4... your T3 could be better too). I'm taking levothyroxine right now (T4), but I know a lot of people swear by Armour (natural, desiccated thyroid) because it gives you the whole range of hormones (T4, T3, T2, T1).

It is really frustrating to chase down those remaining symptoms :( Have you considered things like nutrient deficiencies, candida, other hormonal imbalances (especially cortisol), low stomach acid, heavy metal toxicity? These can all cause a lot of the symptoms you mentioned. Maybe you have a combination of problems.

As hard as it is to be patient, over the next two months (I have an appointment with a new GP in December) I'm trying to see if the gluten-free, casein-free, corn-free diet, some new supplements, and better absorption will help my body get back into balance. A deficiency in Vitamin D, for example, can really do a LOT of crazy things to your body... so I'm giving my supplements a chance to work.

I do think you're right to keep pursuing these things! You deserve to feel energetic and healthy :D

ohsotired Enthusiast

Thank for posting, Mother of Jibril. I seem to recall another thread recently about slightly low thyroid and whether to be concerned.......wonder if I could find it again. Do you think this is worth talking to my doc about?

To my knowledge, there haven't been tests for nutrient deficiences (other than B12/Folic Acid), hormones, low stomach acid or heavy metal toxicity. I do know that my B12 and Folic Acid came back "normal" a month or so ago, but I don't think anything else has been checked (will look at my results again).

Guess maybe I was hoping thyroid, because that would at least be an answer, ya know? *Sigh* Just ready to feel better again.

Mother of Jibril Enthusiast

I think it's definitely worth talking to your doctor. You might do really well with a low dose of Armour... some doctors are open to letting you try it. The bad thing about having too much thyroid hormone is that it's hard on your heart and can lead to osteoporosis, but you could stop taking it if it gives you hyper symptoms (sweating, fast heartbeat, etc...). Too little hormone does cause some of the symptoms you mentioned... dry skin (mine has been SO dry... it's a miracle to me that it's getting better), feeling cold, fatigue, brain fog, low libido.

The night sweats seem like a separate issue to me. Are you a woman? :huh: How old are you? Could you be going into menopause? What about an appointment with a good GYN?

The negative tests for lupus and RA are good news. I know people with both conditions and they can be really frustrating disorders. :(

ShayFL Enthusiast

Keep in mind that if your Ferritin is low and your adrenal hormone cortisol is low, you can get "false hyper" symptoms when you take Armour. Those two need to be up to snuff BEFORE starting Armour.

With your labs....I would DEFINITELY consider Armour. I was severely hypo at 2.8 TSH and still hypo at 2. I am now .08 which is perfect due to autoimmune disease. You want to supress the TSH to stop the attack.

You should also have your antibodies to your thyroid checked.

You are getting the picture, it just isnt complete yet.

Go here and LEARN:

www.stopthethyroidmadness.com

Mother of Jibril Enthusiast

Sorry to get off on this tangent... I'm hoping Shay or someone else can answer this.

I understand why you don't want to have a thyroid antibody attack going on. What I don't understand is how Armour is supposed to stop it. Does it trick your body into thinking there's nothing left to attack? In the case of celiac (where your immune system is attacking your intestines), the solution is to stop eating gluten. Do we know why the body creates thyroid antibodies? To me, it seems like it would be better to get to the root of the problem instead of suppressing the attack with Armour. I'm not saying it doesn't work. Obviously, a lot of people feel better on Armour. I'm just wondering about the underlying mechanism for Hashi's and Graves.

ShayFL Enthusiast

Mother of J, if you figure out what "causes" autoimmune attacks and how to fix it, you will win the Nobel Prize. There is no cure. Only management. Just like Celiac is managed with a gluten-free diet. It doesnt cure it.

I am with you, if there is a root problem, fix it. But the issue is that researchers have not figured out what that "root" is.

And I am not going to lay around in a coma 1/2 dead waiting for a "cure" when I can feel great taking a natural thyroid supplement and enjoy my life. Believe me I fought it. I spent too many years of my life studying alternative medicine to end up taking a prescription drug. Those pills sat on my counter for months before I would take them. I always thought I could "fix" it. And I tried everything you think of to do so. I eat healthy. No one eats healthier food than I do. I tried supplements. Acupuncture. Biofeedback. Cognitive therapy. Chiropractic. Cleanses. Skin brushing. Saunas. Sweat lodges. Rolfing. Raw food. Vegan. Vegetarian. Prayer. Faith healers. You name it.

At some point you have to say, hey, maybe there is a way to "fix" this, but G-d hasnt shown me it yet (or MAYBE he has.....). What he has shown me are these Armour pills. I dont want to live a miserable life forever, die and have G-d say.....you should have taken the pills. They were the answer to your prayers. And I am sooooo glad I finally took them. They really did give me my life back. Not 100%.....but man what a difference! Synthroid did not work for me as I had tried them 12 years ago after my daughter was born.

TSH stimulates the thyroid. So as long as there is a lot of TSH floating around in the blood, the body attacks the thyroid. It is kind of like a red flag that tells the immune system...look at me....Im over here. So when you suppress the TSH, the immune system doesnt see the thyroid as a threat anymore. There is nothing to say it is there.

There are many theories as to why an organ like the thyroid gets attacked. Some believe toxic metals or perhaps a virus/bacteria get lodged there at one time. So the immune system attacks to get rid of the irritant. The immune system is smart....too smart. Over time it has learned "we must attack the thyroid" and the immune system doenst "unlearn".

That will be the key, a way to get the immune system to "unlearn".

Now some people's thyroid can heal on Armour. They take it for a few years and they start to get hyper, ween off of it and they thyroid works great again. Maybe a 3 - 7 year rest is all that is needed for the immune system to "forget" to attack it.

Autoimmunity is a very interesting disease process. And so very complicated.

In the world we live in with so many toxins in the air, water and food. With all of the negative energy floating about via radio waves (cell phones, etc.). You cannot avoid taking things into your body that can trigger autoimmune diseases. I believe they will just continue to increase in the future, unless something is done about our polluted environment.


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



Celiac.com Sponsor (A8-M):



Mother of Jibril Enthusiast

Thanks for that explanation. It really does help... and it makes sense that our immune systems learned to be a little too smart. If things are going wrong (starvation, disease, toxicity) just attack the thyroid. Slow down the metabolism, don't allow for normal reproduction. Sigh.

Autoimmune disorders really SUCK!!!! For the last couple of weeks I've been realizing that this is no longer an "experiment" to improve my health. This is my first permanent prescription medicine. If I don't want any more autoimmune disorders (and I really, REALLY don't... I already have at least two), then I better stay off gluten and dairy, watch out for other toxins... I guess I just need time to get used to it. <_<

ShayFL Enthusiast

We're sisters there....believe me. :rolleyes:

I still hold on to a shred of hope that I can someday get off Armour. :)

There are people that get better after gluten-free for an extended period of time too.

Fingers crossed.....

ohsotired Enthusiast
Keep in mind that if your Ferritin is low and your adrenal hormone cortisol is low, you can get "false hyper" symptoms when you take Armour. Those two need to be up to snuff BEFORE starting Armour.

With your labs....I would DEFINITELY consider Armour. I was severely hypo at 2.8 TSH and still hypo at 2. I am now .08 which is perfect due to autoimmune disease. You want to supress the TSH to stop the attack.

You should also have your antibodies to your thyroid checked.

You are getting the picture, it just isnt complete yet.

Go here and LEARN:

www.stopthethyroidmadness.com

Sorry to be dense.........but was this for me, Shay? (Again, I'm brain dead today.)

So if you meant this for me, I should:

-Have my ferritin checked (Looked through lab reports since July, and this has not been checked)

-Have my thyroid antibodies checked (Is there a specific test I need to ask for?)

Right?

While I'm at it, are there other specific vitamin/minerals I should ask to be checked for that might be contributing to my symptoms?

How about hormone related things? (Mother of J - to answer your question, I'm almost 34, female, and may be perimenopausal. My mom went through it early, and it was rough. It lasted close to 10 years for her. EEK.)

On a possibly related note, I came home from work to day with a headache and a low grade fever (99.9 today) - only to realize this has been going on for at least a couple of weeks. Not sure what to make of that, but will mention it to my doc.

Thanks you two!

ShayFL Enthusiast

Sorry we got off on a tangent. :huh:

Anyway, yes you should have your Ferritin tested and your morning cortisol. There are 2 antibodies for thyroid: Thyroid peroxidase antibody (TPOAb), Thyroglobulin antibody (TgAb) There are actually 3, but these are the two you need.

Have your MMA tested as a serum B12 doesnt always give an accurate picture of your B12 status.

These will be a good start to hopefully getting you better soon. :)

ohsotired Enthusiast

No worries about the tangent. ;) It was interesting reading (though I'll have to come back and re-read it again when I'm less brain dead).

Ok, making a list........

-Ferritin

-Morning Cortisol (is this the saliva test I read about? or is this blood as well?)

-Thyroid antibodies TPOAb and TgAb

-MMA

Just want to cover as much ground as possible on this next visit.......I'm starting to feel like a dang pincushion with all the blood draws I've had this year. :lol:

ShayFL Enthusiast

That is blood cortisol. I did saliva because my M.D. is Holistic and believes in it. A lot of M.D.s do not. So you would have to pay out of pocket for it. So go with what insurance covers for now and save some money. :)

ohsotired Enthusiast

Gotcha. Thank you!

I'm all ears if anyone else thinks of other things that I should have checked.

Lori-greenacres Newbie

I've enjoyed following your conversation especially mother of J and shay regarding autoimmunity....

I would like to add something I've recently learned about Armour.

I love Armour - it is the only natural form out there and I'd been on it for at least 8 years - well, until just a few months ago when I had some problems with getting it from the pharmacy - and then they had to change the number of pills because of potency/strengh - and then, well to bypass my story and explain - the conclusion was that the doctor said that they are having trouble maintaining the integrity of the strength of armour - to keep it consistent - and so the pharmacy is having trouble getting it - and so maybe its time for me to try a synthetic replacement.

I've only been on the levothyroxin for almost 2 months and it seems OK - my last labs were a little low so we made a minor adjustment in my meds - but then again, I now find myself pregnant and that will probably throw everything out of balance again!

Anyhow - please pay attention to your Armour and even if you have been taking the prescription for year - read the bottle when you pick up the refill!

Have a great weekend!

ShayFL Enthusiast

Just so you know....And I HATE to see doctors do this to their patients......I hope you can handle the Synthroid.....

the doctor said that they are having trouble maintaining the integrity of the strength of armour - to keep it consistent - and so the pharmacy is having trouble getting it - and so maybe its time for me to try a synthetic replacement.

This is something that has been used by M.D.s since Synthroid was first introduced. The argument has ALWAYS been that the synthetic is better because it is easier to regulate the strength. But if you do some research you will learn that Synthroid is the medication that has had the MOST/ALL of the trouble with consistency. Law suits have been filed against the makers of Synthroid NOT Armour.

When the pharmacy couldnt fill my Rx (so I ordered from my online source that had some left), I called and talked to someone at Forest Labs who assured me that there has been no problems with their medication that they are simply making some changes in the manufacturing process of the larger strengths. The lower strengths are not affected. I would bet they are looking to make the larger strengths smaller pills. They get HUGE and I could see where an elderly person could get a big hard pill stuck in the throat.

I will never take Synthroid unless Armour and Westthroid is discontinued. Even if it wasnt consistent (which I have every indication it is and they said it was and there have been NO reports to the contrary), I would prefer it over the synthetic which made me horribly ill.

The backorder on Armour will be lifted by the end of the year. I have enough to get me through 3 more months, so all should be fine. I use the 1 grain size (which is not affected by manufacturing process change). I multi-dose so I take these smaller dosages so I dont have to cut pills.

And there is always Westthroid another good natural thyroid that is exactly like Armour only it does not have the sucrose and cannot be taken sublingually. My husband takes Westhroid.

***According to the Federal Register, no currently marketed orally administered levothyroxine sodium product has been shown to demonstrate consistent potency and stability and, thus, no currently marketed orally administered levothyroxine sodium product is generally recognized as safe and effective.

The government found that often levothyroxine sodium drugs do not remain potent through their expiration dates, and tablets of the same dosage strength from the same manufacturer have been found to vary in potency from lot to lot in terms of the amount of active ingredient present. This lack of stability and consistent potency has the potential to cause serious health consequences to those of us taking these drugs.

Levothyroxine sodium was first introduced into the market before 1962, without an approved "New Drug Application" (NDA), apparently in the belief that it was not a new drug.

Since that time, almost every manufacturer of orally administered levothyroxine sodium products, including Synthroid, has regularly reported recalls that were the result of potency or stability problems.

In some cases, problems result from the fact that levothyroxine sodium is unstable in the presence of light, temperature, air, and humidity. Just since 1991, there have been no less than 10 recalls of levothyroxine sodium tablets involving 150 lots and more than 100 million tablets. In all but one case, the recalls were initiated because tablets were found to be subpotent or because their levothyroxine tablets lose potency before their expiration dates. The remaining recall was initiated for a product that was found to be too potent. During this period, FDA also issued warnings to a manufacturer regarding a levothyroxine sodium product that lost potency when stored at the higher end of the recommended temperature range, and one whose potency ranged from 74.7 percent to 90.4, instead of the required 90 percent to 110 percent.

Problems also stem from formulation changes. Because these products are marketed without NDA's, manufacturers have not had to file for FDA approval each time they reformulate their levothyroxine sodium products. Manufacturers have changed inactive ingredients, physical form of coloring agents and other product aspects, resulting in significant changes in potency, in some cases increasing or decreasing potency by as much as 30 percent. As a result, in some cases, people on the same dosage for years became toxic on the same dose. There is evidence that manufacturers continue to make these sorts of formulation changes which affect potency.***

***Because Armour Thyroid medications require a 4.22 to 1 ratio of T4 to T3, batches of desiccated thyroid are mixed until the desired ratio is obtained. This method ensures that each strength of Armour Thyroid will be consistent every time.***

Live2BWell Enthusiast

I have been through the run around with the thyroid problems, as you know.. It looks like you might have a slight thyroid issue, but I can't say for sure (I am so confused with all the thyroid stuff myself!)

To learn more about thyroid issues, a great website is Open Original Shared Link

(( Hugs ))

ohsotired Enthusiast

Hey sweetie! Glad to see you here! :)

I know you've been through the wringer, for sure! Hope it gets better soon!

I've read and re-read through that website, and there's some awesome info there......now how to get my doc to read it........... <_< Sending you a PM back.

Lori-greenacres Newbie

Wow! Lots of good info here.

I will be sharing the info on levothyroxine with my doctor (as my doctor agrees with me about Armour - but I am curious why she never mentioned Westhroid - I'll have to find out more about this one since I've never heard of it and I've been on thyroid medicine for 16 years.

Thanks,

Mtndog Collaborator

I was on Armour for quite awhile when I had the same thing happen- couldn't get it. My doctor switched me to Thyrolar about a month ago which I think I like as much (hard to tell- I have Lyme so it's hard to tell what causes what symptoms :blink: :blink: ).

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Jmartes71's topic in Dermatitis Herpetiformis
      1

      Natural remedies

    2. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Gluten and short-term memory.

    3. - Scott Adams replied to Suze046's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Reintroduction of Gluten

    4. - Scott Adams replied to Rejoicephd's topic in Coping with Celiac Disease
      2

      Draft gluten-free ciders… can they be trusted ?

    5. - Scott Adams replied to Mykidzz3's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      High Cost of Gluten-Free Foods


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,367
    • Most Online (within 30 mins)
      7,748

    nursengul
    Newest Member
    nursengul
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living, particularly for managing systemic inflammation and its various symptoms, so sharing your story is valuable. Your observation that it may also be helping with bloating is fascinating, as that could point to an overall reduction in inflammation. Thank you for sharing what is working for you!
    • Scott Adams
      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sleep disruption, and digestive irregularity. It's a frustrating and often invisible effect that can make you feel unlike yourself, so that moment of clarity, though born from a tough dominoes match, is actually a powerful piece of self-knowledge. Identifying a specific culprit like that steak strip is a huge win, as it arms you with the information needed to avoid similar pitfalls in the future and protect your cognitive clarity. You are definitely not alone in experiencing this particular set of neurological and physical symptoms; it's a strong reminder of gluten's profound impact on the entire body, not just the digestive system. Supplementation may help you as well.  The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      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. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly consistent with a non-celiac gluten sensitivity. While a celiac reaction can be more immediate, a sensitivity reaction is often delayed, sometimes taking several days to manifest as your body's inflammatory response builds up; the fact that your symptoms returned a few days after reintroduction is a strong indicator that gluten is indeed the culprit, not a coincidence. Your doctor's advice to reintroduce it was necessary to confirm the diagnosis, as the initial negative celiac test and subsequent improvement on a gluten-free diet pointed strongly towards sensitivity. Many in this community have gone through this exact same process of elimination and challenging, and it's wise to reintroduce gently as you did. Given your clear reaction, the best course of action is likely to resume a strict gluten-free diet, as managing a sensitivity is the primary way to control those debilitating symptoms and allow your body to heal fully.
    • Scott Adams
      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained gluten-containing beer, contaminating your drink. The fact that you didn't react at a clean brewery suggests they may have had more meticulous practices or separate lines, but this is the exception, not the rule. Many in the community have had identical experiences, leading them to strictly avoid draft cider and opt for bottled or canned versions, which are poured directly from their sealed container and bypass the contaminated tap system entirely. Switching to bottles or cans is the safest strategy, and your plan to do so is a smart move to protect your health. PS - here are some articles on the topic:    
    • Scott Adams
      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and less processed, like rice, potatoes, beans, lentils, corn, eggs, and frozen fruits and vegetables—these are nutritional powerhouses that can form the basis of her meals. For the specialty items like bread and pasta, see if your local stores carry smaller, single-serving packages or allow returns if a product causes a reaction, as some companies understand this challenge. Regarding vitamins, that is an excellent next step; please ask her doctor to prescribe a high-quality gluten-free multivitamin, as insurance will often cover prescribed vitamins, making them much more affordable. Finally, connecting with a local celiac support group online can be a treasure trove of location-specific advice for finding the best and most affordable products in your area, saving you both time and money on the trial-and-error process. 
×
×
  • Create New...