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

What Thyroid Tests Should We Order? & Another Disappointing Dr.


Tidings

Recommended Posts

Tidings Explorer

Hello again, folks,

Those of you who've read the TOP FIVE REASONS TO CHANGE DOCTOR thread will perhaps remember that I "fired" my former G.P. (sort of) and was hoping the new one would be better... Well!

Saw her yesterday and had hopes dashed...

Brief synopsis of encounter:

First, they were running horribly BEHIND, and I had to wait over 1.5 hours before she even swooshed into the room. Right away she goes, "What's your biggest problem because I haven't got much time!" She was impatient, flippant, and cut me off every time I tried to say anything, so I never even got to bring up the CHEST PAIN & SHORTNESS OF BREATH I've been having! (I had printed out a checklist of symptoms of Hypothyroid but never even got a chance to bring it up.)

(Source of checklist: Open Original Shared Link )

When I brought up the TSH (mine doubled in past two months), she brushed it off with "TSH goes up and down...means nothing."

She actually called me "DR. ---"!, as a way of showing disdain for my remarks. When she started to write a lab slip for a spine scan (for my disc degeneration), I started to say "I don't want to go there" (--I had another place in mind, because the place named on the lab slip always screws up the billings and they have a belligerent attitude), and she immediately CRUMPLED UP THE LAB SLIP WITH AN ANGRY FLOURISH!!?? (She could have just given me that lab slip and let me go to a different lab!)

She dashed off a "prescription" for the spine test (without identifying which test), handed it to me, and said, "Come back next week" (and pay another co-pay)... She hustled me out of the office saying, "I have three more patients waiting!"

She didn't even put any PROCEDURE or DIAGNOSTIC CODES on the lab slips, so I'll have to call the office staff for the CODES or the insurance company won't even pay for any of it.

I was very disappointed, because I had high hopes of finally finding a better doctor than the one I had had and I need help to delve further into possible HYPOTHYROIDISM.

Can folks here help me to know WHICH tests should be ordered to determine if Hypothyroidism is indeed the problem? I suggested "TPO Ab" to her and "Selenium," which she wrote on the lab slip. Probably should add "Tg Ab" (thyroid antibody). [This is just from stuff I've read online... I'm "flying blind" here and my insurance is due to expire soon, so I need to get some answers.]

Thanks in advance for any advice or suggestions from those of you who have experienced Thyroid-related problems and been diagnosed: Which tests did they use to diagnose you?

Symptoms include: Fatigue, exhaustion, thinning hair, insomnia, forgetfulness, shortness of breath, tight chest (cardiologist ruled out heart problems), outer one-third eyebrows gone, racing heart, high cholesterol, can't stand HEAT, hoarse, gravely voice, itchy skin, inability to concentrate, ringing ears, irritable, "C"--Some of these symptoms could be from food allergies/Celiac, and some could relate to Thyroid problems. I understand the two conditions often overlap.

Thanks again for taking time to read and respond!

P.S. One positive development to report: Those "itchy" feet that were keeping me awake at night STOPPED when I stopped taking Lisinopril about a week ago--so I'm pretty sure the BP med was involved and aggravating my insomnia. Still have insomnia but not so much due to itchy/twitchy feet. I have to say, yesterday's encounter with new doc didn't do much to relax my HBP!!


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



Celiac.com Sponsor (A8-M):



Roda Rising Star

Some of your symptoms almost sound like hyperthyroid. Here is a link to the antibody tests. Open Original Shared Link In addition to those you should have a TSH, free T3 and free T4. I have even heard of ordering reverse T3 and T4 tests but have never encountered these. I have only had the antibody tests once back in 2000 that showed I had hashimotos disease. Routinely every 4-6 months or when I have symptoms I have the TSH, free T3 and free T4 tests. I currently am on levothyroxine and cytomel both.

Katie B Apprentice

I'd recommend seeing an endocrinologist..they're the ones who really know what the score is...

burdee Enthusiast

Some of your symptoms almost sound like hyperthyroid. Here is a link to the antibody tests. Open Original Shared Link In addition to those you should have a TSH, free T3 and free T4. I have even heard of ordering reverse T3 and T4 tests but have never encountered these. I have only had the antibody tests once back in 2000 that showed I had hashimotos disease. Routinely every 4-6 months or when I have symptoms I have the TSH, free T3 and free T4 tests. I currently am on levothyroxine and cytomel both.

I agree with your test suggestions. I had hypothyroid symptoms for YEARS (but no weight gain) and a TSH score that progressively climbed over that period (with one extremely low score amid the high results before it shot up higher than ever). My HMO doc never bothered to give me a free T4 and considered my TSH normal, because my HMO did not revise their TSH range in 2002 as suggested.

However, I recently found a naturopath who wants to determine why I've had 8 gastrointestinal infections in the past 4 years, plus a history of frequent colds and bladder infections. She listened to my symptom history, which included frequent infections, cold intolerance, chronic constipation (even after abstaining from gluten and 6 other diagnosed food allergies and taking mucho high dose probiotics), increasing fatigue, cold hands and feet, brittle toenails, dry skin and hair) and requested the Free T4 and TSH tests. From my history and test results, she prescribed Levoxyl, which I've only taken for a week. I've heard that patients usually don't see much improvement for 2-3 weeks. However, I believe hypothyroid (and hypochloridia) made my vulnerable to all those infections. So I hope to feel much healthier (and energetic!) after a few weeks.

Tidings Explorer

Hi again, folks,

Have been away for a while, busy with doc appointments and blood work. As noted in another thread, I'm getting REALLY confused (and discouraged) about the various test results, especially the Thyroid levels and what they mean.

My TSH in July was 2.32; then in September it went to 4.35. When I pointed this out to doctor, she said "TSH goes up, TSH goes down; means nothing." ??? Just had additional blood work done with following results:

Thyroxine (T4) 6.9 range 4.5-12.0

Triiodothyronine (T3) 101 range 71-180

Thyroid Peroxidase (TPO) Ab 9 range 0-34

Selenium, Blood 284 range 100-340

Vitamin D, 25 Hydrox. 23.6 (Low) range 32-100

ANA Direct Negative

The only thing I can see that's obviously out of range on these results is the Vitamin D, at 23.6. It had been at 22 in July, so I started taking a D-supplement for a while; then it was at 31.8 in early September, so doc said I could stop it. Now it's back down to 23.6?

Can anybody make any sense of any of these results? I feel like my thyroid (or SOMEthing) is out of whack, with insomnia, loss of outer third of eyebrows, hair loss, occasional achiness around "voicebox" (thyroid area?), weight gain, irritability, high blood pressure, fatigue, heart palpitations... etc. ad nauseum. (One symptom that doesn't jibe with the usual list of HYPOthyroidism: Instead of feeling COLD a lot, I often feel overHEATED and can't stand hot weather, but I've always been like that--long before any chronic illnesses set in.)

Am exhausted from seeing (useless) doctors and from blood tests; my arm has been badly bruised for a week, since the latest blood draws. (Is BRUISING a sign of anything related to vitamin deficiency and/or celiac disease?)

Am going to take a break from doctors and have instead started some acupuncture treatments for a while...

Thanks for any input.

Roda Rising Star

Hi again, folks,

Have been away for a while, busy with doc appointments and blood work. As noted in another thread, I'm getting REALLY confused (and discouraged) about the various test results, especially the Thyroid levels and what they mean.

My TSH in July was 2.32; then in September it went to 4.35. When I pointed this out to doctor, she said "TSH goes up, TSH goes down; means nothing." ??? Just had additional blood work done with following results:

Thyroxine (T4) 6.9 range 4.5-12.0

Triiodothyronine (T3) 101 range 71-180

Thyroid Peroxidase (TPO) Ab 9 range 0-34

Selenium, Blood 284 range 100-340

Vitamin D, 25 Hydrox. 23.6 (Low) range 32-100

ANA Direct Negative

The only thing I can see that's obviously out of range on these results is the Vitamin D, at 23.6. It had been at 22 in July, so I started taking a D-supplement for a while; then it was at 31.8 in early September, so doc said I could stop it. Now it's back down to 23.6?

Can anybody make any sense of any of these results? I feel like my thyroid (or SOMEthing) is out of whack, with insomnia, loss of outer third of eyebrows, hair loss, occasional achiness around "voicebox" (thyroid area?), weight gain, irritability, high blood pressure, fatigue, heart palpitations... etc. ad nauseum. (One symptom that doesn't jibe with the usual list of HYPOthyroidism: Instead of feeling COLD a lot, I often feel overHEATED and can't stand hot weather, but I've always been like that--long before any chronic illnesses set in.)

Am exhausted from seeing (useless) doctors and from blood tests; my arm has been badly bruised for a week, since the latest blood draws. (Is BRUISING a sign of anything related to vitamin deficiency and/or celiac disease?)

Am going to take a break from doctors and have instead started some acupuncture treatments for a while...

Thanks for any input.

I would continue taking vitamin D. I was extremely deficient and I was prescribed 50,000 iu weekly. I am still taking that amount and I started taking it in Jan. 09. Low vitamin D can cause fatigue. After about a month + of taking it I was amazed at how much better I felt. Also have you had your ferritin checked? Mine was also chronically low and again I had fatigue from that. The main symptom for me with this was tachycardia. It very well could be something else besides your thyroid. That said though, there is a iron/thyroid connection. I don't know much about that though.

Tidings Explorer

I would continue taking vitamin D. I was extremely deficient and I was prescribed 50,000 iu weekly. I am still taking that amount and I started taking it in Jan. 09. Low vitamin D can cause fatigue. After about a month + of taking it I was amazed at how much better I felt. Also have you had your ferritin checked? Mine was also chronically low and again I had fatigue from that. The main symptom for me with this was tachycardia. It very well could be something else besides your thyroid. That said though, there is a iron/thyroid connection. I don't know much about that though.

Hi Roda,

Wow, that sounds like a lot of Vitamin D. How low was your D-level? The doctor wanted me to take 1,000 units a day (which I was already getting in my multivitamin; I added between 500-1000 additional IU per day); but that was during "darker" months when we weren't outside much. (What's weird is how quickly my level fell back down as soon as I stopped taking the supplement.) Is there a particular type of Vit. D that is easier to assimilate than this one here (Calcium Citrate+D as cholcaliferol)?

Yes, I had the Ferritin checked earlier this month (I tend to check-mark additional boxes on Lab Slips myself, after I leave doc's office, if I think there are more tests that might clarify things!!). The Ferritin came in at 85, with range of 13-150.

Will try to dig up some of my older lab test results from years when I was feeling better (can barely remember that far back!), and compare those results with those of the past couple of years of ramshackle-health, and see if anything jumps out. Have more or less GIVEN UP on these latest doctors and will flounder around on my own and visit my new acupuncturist for a while to see if that helps... (She is also going to work up some Chinese herbal supplements for me, but needs to verify that they are gluten-free first...)


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



Celiac.com Sponsor (A8-M):



Roda Rising Star

Hi Roda,

Wow, that sounds like a lot of Vitamin D. How low was your D-level? The doctor wanted me to take 1,000 units a day (which I was already getting in my multivitamin; I added between 500-1000 additional IU per day); but that was during "darker" months when we weren't outside much. (What's weird is how quickly my level fell back down as soon as I stopped taking the supplement.) Is there a particular type of Vit. D that is easier to assimilate than this one here (Calcium Citrate+D as cholcaliferol)?

Yes, I had the Ferritin checked earlier this month (I tend to check-mark additional boxes on Lab Slips myself, after I leave doc's office, if I think there are more tests that might clarify things!!). The Ferritin came in at 85, with range of 13-150.

Will try to dig up some of my older lab test results from years when I was feeling better (can barely remember that far back!), and compare those results with those of the past couple of years of ramshackle-health, and see if anything jumps out. Have more or less GIVEN UP on these latest doctors and will flounder around on my own and visit my new acupuncturist for a while to see if that helps... (She is also going to work up some Chinese herbal supplements for me, but needs to verify that they are gluten-free first...)

My vitamin D level was 17. Most Rx vitamin D in in the form of D2(ergocalciferol). The consensus is that the D3(cholcaliferol) form is more bioavailable. So If you are going to resume it you can look for the D3 kind. There was a study that suggested that the D2 is just as effective, but has met with hot debate. I don't have the source right now, but search vitamin D on this forum and it is posted somewhere. My GI, endocrinologist, and gyn doctor think it is best for me to stay on the RX all year round. My husband who is not celiac, but who I think suffers from SAD was taking 4,000 iu of vitamin D3 and had no ill effects. I believe it helped his mood and his bp. He always sufferes what I call a "funk" in the winter months. I do believe you need to be taking more, but just how much I'm unsure. Maybe someone else could chime in. You need to be taking enough to fill up the "tank". My doctors recommend that my level be no lower than 50 with 70 optimal. At least your ferritin is up. Mine started at 4. Last I knew it was 31. I still need to get it up to mid range.

Tidings Explorer

Hi again Roda,

I wrote "Is there a particular type of Vit. D that is easier to assimilate than this one here (Calcium Citrate+D as cholcaliferol)?" and then today I realized I had grabbed the wrong White bottle with Vitamin D written on label! The one I was taking was Vit. D3 2000 IU, and sometimes I broke them in half because they're hard to swallow and I was already getting 1000 IU in my daily vitamin. So I was supplementing between 2-3,000/day. Will resume and see if anything improves. Thanks.

PS Wow, that does sound like a low Ferritin! What do you do to bring it up?

Roda Rising Star

Before I was diagnosed I tried otc and Rx supplements but they either didn't work or made my stomach worse. After diagnosis I concentrated on iron rich foods and gave myself time to "heal" but it wasn't enough to bring it up. I was looking at iron infusions, but decided since I was so much better I would try otc supplements. My GI recommended the slowFe brand and I took two a day. I was suprised they didn't bother my stomach. I havn't taken them for a long while and I am needing to start them back to bring my levels up more. I got tired of swallowing so many supplements/pills that I just quit. Probably not the best thing for me to do but I'm starting back today.

Roda Rising Star

Before I was diagnosed I tried otc and Rx supplements but they either didn't work or made my stomach worse. After diagnosis I concentrated on iron rich foods and gave myself time to "heal" but it wasn't enough to bring it up. I was looking at iron infusions, but decided since I was so much better I would try otc supplements. My GI recommended the slowFe brand and I took two a day. I was suprised they didn't bother my stomach. I havn't taken them for a long while and I am needing to start them back to bring my levels up more. I got tired of swallowing so many supplements/pills that I just quit. Probably not the best thing for me to do but I'm starting back today.

gfForLife Newbie

Hi again Roda,

I wrote "Is there a particular type of Vit. D that is easier to assimilate than this one here (Calcium Citrate+D as cholcaliferol)?" and then today I realized I had grabbed the wrong White bottle with Vitamin D written on label! The one I was taking was Vit. D3 2000 IU, and sometimes I broke them in half because they're hard to swallow and I was already getting 1000 IU in my daily vitamin. So I was supplementing between 2-3,000/day. Will resume and see if anything improves. Thanks.

PS Wow, that does sound like a low Ferritin! What do you do to bring it up?

I've read that the vitamin D3 in liquid gelcaps or liquid dropper form is easiest to absorb. I'm assuming the ones you're taking are both in hard tablet form? The general rule is 1,000 iu per 25 lbs of body weight. I take 5,000 a day during the winter (even though I weigh more than 125, haha) but I'm going to get my D tested in a few days and I may up it. I give my 2 year old 1,000 iu a day as well. For you, since you're trying to up your levels it would be fine to get a 5,000 iu gelcap and take it every day on top of the other two you're taking. You won't OD, go to the vitamin D council website for more info but it takes some ridiculous amount to create toxicity like 100,000 iu a day! Fat also helps the D absorb so take it all with a meal containing some fat.

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 Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

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

      Body dysmorphia experience

    3. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      2

      Heat intolerant... Yikes

    4. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      Related issues

    5. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      23

      Headaches / Migraines and Hypoglycaemia


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,149
    • Most Online (within 30 mins)
      7,748

    dvyoung
    Newest Member
    dvyoung
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
    • Scott Adams
      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
      I am so sorry you are going through this; it sounds incredibly overwhelming and disheartening to be dismissed by the very medical professionals you're turning to for help. It is completely understandable that you feel lost and exhausted, not just from the relentless physical symptoms like the leg pain, stomach issues, and profound fatigue, but from the psychological toll of being told it's "just IBS" or that you need a therapist when you know your body is signaling that something is wrong. While it's true that a normal tTG test can indicate that celiac disease itself is being managed from a dietary perspective, it is a major oversight for your doctors to ignore your other diagnoses like SIBO, a hernia, and Barrett's esophagus, all of which can contribute significantly to the symptoms you describe. You are absolutely right to be seeking a new Primary Care Physician who will listen to your full history, take your Barrett's diagnosis seriously, and help you coordinate a care plan that looks at the whole picture, because your experience is not just in your head—it's in your entire body, and you deserve a medical team that acknowledges that. I had hernia surgery (laparoscopic), and it's not a big deal, so hopefully you can have your new doctor give you some guidance on that.
    • knitty kitty
      Some people have difficulty processing tyrosine.  Cut out the nuts and cheese and see if there's any difference.  Everyone is different. This study shows that tyrosine can affect our brain with detrimental effects as we age. Neuro-Cognitive Effects of Acute Tyrosine Administration on Reactive and Proactive Response Inhibition in Healthy Older Adults https://pmc.ncbi.nlm.nih.gov/articles/PMC6084775/ "In conclusion, we show age-related effects of tyrosine administration especially on proactive, not reactive, response inhibition, accompanied by signal changes in dopamine-rich fronto-striatal brain regions. Specifically, we observed that tyrosine’s effect on brain and cognition became detrimental with increasing age, questioning the cognitive enhancing potential of tyrosine in healthy aging."
×
×
  • 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.