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


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#1 Tidings

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Posted 18 September 2010 - 02:19 PM

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: http://thyroid.about...a/checklist.htm )

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!!
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#2 Roda

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Posted 18 September 2010 - 02:39 PM

Some of your symptoms almost sound like hyperthyroid. Here is a link to the antibody tests. http://www.labtestso...odies/test.html 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.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#3 Katie B

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Posted 18 September 2010 - 06:17 PM

I'd recommend seeing an endocrinologist..they're the ones who really know what the score is...
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Diagnosed with eczema 1999, IBS 2004, Horner's syndrome 2004, severe anemia (B12) 2006, reactive hypoglycemia 2007, hypopituitarism due to autoimmune attack 2009 (diabetes insipidus - lack of vasopressin, lack of cortisol), potential Celiac Disease - difficulty getting 100% diagnosis but have gone gluten-free and am feeling better.

#4 burdee

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Posted 18 September 2010 - 07:45 PM

Some of your symptoms almost sound like hyperthyroid. Here is a link to the antibody tests. http://www.labtestso...odies/test.html 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.
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Gluten, dairy, soy, egg, cane sugar, vanilla and nutmeg free. Enterolab diagnosed gluten/casein intolerant 7/04; soy intolerant 8/07. ELISA test diagnosed egg/cane sugar IgG allergies 8/06; vanilla/nutmeg 8/06. 2006-10 diagnosed by DNA Microbial stool tests and successfully treated: Klebsiella, Enterobacter Cloaecae, Cryptosporidia, Candida, C-diff, Achromobacter, H. Pylori and Dientamoeba Fragilis. 6/10 Heidelberg capsule test diagnosed hypochloridia. Vitamin D deficiency, hypothyroiditis, hypochloridia and low white blood cells caused vulnerability to infections. I now take Betaine HCl, probiotics, Vitamin D and T3 thyroid supplement to maintain immunity.


#5 Tidings

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Posted 26 September 2010 - 05:13 PM

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.
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Thanks to Sarah at personalizedcause.com for allowing me to adapt their beautiful green Celiac Awareness ribbon as my "avatar" graphic.

#6 Roda

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Posted 27 September 2010 - 06:15 PM

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.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#7 Tidings

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Posted 27 September 2010 - 11:57 PM

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...)
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Thanks to Sarah at personalizedcause.com for allowing me to adapt their beautiful green Celiac Awareness ribbon as my "avatar" graphic.

#8 Roda

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Posted 28 September 2010 - 03:58 AM

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.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#9 Tidings

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Posted 28 September 2010 - 12:31 PM

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?
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Thanks to Sarah at personalizedcause.com for allowing me to adapt their beautiful green Celiac Awareness ribbon as my "avatar" graphic.

#10 Roda

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Posted 29 September 2010 - 03:20 AM

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.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#11 Roda

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Posted 29 September 2010 - 03:20 AM

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.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#12 gfForLife

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Posted 29 September 2010 - 04:07 AM

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.
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