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Please Help With Thyroid Test


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13 replies to this topic

#1 jstwnttbhealthy

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Posted 07 May 2011 - 10:36 AM

i'm really hoping to find some help here because my doctor obvoiusly can't.
i've been gluten free for 11 month now.
my first blood test was done march 2010: TSH was 2:30
T4free 1:00
second test was april 2011: TSH was 4.41
T4free 0.76
T3 was not tested even though i asked for it.
would this suggest that i'm hypothyroid. i know something is wrong with me. just don't know how to fix it. my legs have gotten really weak. my heart seems to be laboring off and on and i have a lot of muscle twitching (mostley on my left side on my rib cage). there are also some other reading that are off even though the doctor said everything looks fine:
RDW 10.7 - should be between 11.5 - 15.5
Neutrophil 77.2 - should be between 45.0 - 70.9
Lymphocytes 0.8 - should be between 1.5 - 3.5
ALT/SGPT 13 - should be between 18 - 48
Carbon Dioxide 32 - should be 19 - 29
my b 12 went up from 198 to 865, and my vitamin d from 21 to 35.9.

i'm really worried.
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Elisabeth

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#2 jstwnttbhealthy

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Posted 07 May 2011 - 12:09 PM

i just found an older test from january 2009 where my T3 total was 69. should be between 82 - 179.

any help is greatly appreciated.
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Elisabeth

#3 ravenwoodglass

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Posted 07 May 2011 - 02:41 PM

Can you get a second opinion or a referral to an endocrinologist? Your doctor should be addressing these issues. Lots of thyroid knowledgeable folks her so hopefully someone who knows more than I do about it will give some input for you soon.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#4 cassP

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Posted 07 May 2011 - 05:12 PM

i just found an older test from january 2009 where my T3 total was 69. should be between 82 - 179.

any help is greatly appreciated.

ok, from what ive read- a total t3 test is kind of worthless.. or rather doesnt explain much. i think you need to specifically ask for FREE T3.

your TSH & T4 (latest) to me say you are entering into HypOthyroid! the doctors are still using the old range for TSH of .5 to 5.0 or 4.5... but it really should be .3 to 3.00. a Thyroid condition can totally make u feel like crap- make your muscles feel week.. make it hard to breathe etc... it can really make u feel so awful even if your numbers arent too bad. a D deficiency can also make your muscles twinge- but you now are within range- altho- still low- i would supplement a little D and retest soon to make sure you're not overdoing it.

and you need a different doctor- you have to be your own Patient Advocate- if i had just stuck with my PCP i would be MISERABLE- if she didnt give me an ENDO referral when she did- i would have ended up in the ER or psychiatric ward. no joke.

you need a good open minded endo who will test all your numbers INCLUDING all 3 antibodies associated with Hashimoto's and Grave's... and it wouldnt hurt too to find a doc who will test your Reverse T3-

Good luck- and know once you get on this- you will feel better! and demand it now- you do not want to go undiagnosed for years like i did- i went a good 8 years and now my hemmohroids are pretty bad.

you can do it! keep us posted :)
  • 1
1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#5 a1956chill

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Posted 08 May 2011 - 03:03 AM

ok, from what ive read- a total t3 test is kind of worthless.. or rather doesnt explain much. i think you need to specifically ask for FREE T3.

your TSH & T4 (latest) to me say you are entering into HypOthyroid! the doctors are still using the old range for TSH of .5 to 5.0 or 4.5... but it really should be .3 to 3.00. a Thyroid condition can totally make u feel like crap- make your muscles feel week.. make it hard to breathe etc... it can really make u feel so awful even if your numbers arent too bad. a D deficiency can also make your muscles twinge- but you now are within range- altho- still low- i would supplement a little D and retest soon to make sure you're not overdoing it.

and you need a different doctor- you have to be your own Patient Advocate- if i had just stuck with my PCP i would be MISERABLE- if she didnt give me an ENDO referral when she did- i would have ended up in the ER or psychiatric ward. no joke.

you need a good open minded endo who will test all your numbers INCLUDING all 3 antibodies associated with Hashimoto's and Grave's... and it wouldnt hurt too to find a doc who will test your Reverse T3-

Good luck- and know once you get on this- you will feel better! and demand it now- you do not want to go undiagnosed for years like i did- i went a good 8 years and now my hemmohroids are pretty bad.

you can do it! keep us posted :)

I agree with Cass,
I would strongly urge you to get a referral to an endocrinologist.If your current doc refuses your request it may be time to look for a new doc.
  • 0

Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#6 jstwnttbhealthy

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Posted 08 May 2011 - 01:33 PM

i've been searching for a doctor here in colorado springs who is knowlegable about celiac and lo and behold there is one! he's a gastroenterologist who also has celiac. i think i hit the jackpot. hopefully he is covered under my insurance and is taking new patients. would you still rather recommend to see a endocrinologist?
would there be any chance the thyroid could fix itself staying on a gluten free diet or am i dilutional?
thank you cass and everyone for posting :)
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Elisabeth

#7 a1956chill

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Posted 08 May 2011 - 02:07 PM

i've been searching for a doctor here in colorado springs who is knowlegable about celiac and lo and behold there is one! he's a gastroenterologist who also has celiac. i think i hit the jackpot. hopefully he is covered under my insurance and is taking new patients. would you still rather recommend to see a endocrinologist?
would there be any chance the thyroid could fix itself staying on a gluten free diet or am i dilutional?
thank you cass and everyone for posting :)

there is a possibility that a gluten free diet could impact autoimmune thyroid diseases ( Hashimotos and Graves) but they still need to be monitored by a ENDO as does hyper and/or hypo thyroid .
  • 1

Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#8 kimis

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Posted 08 May 2011 - 02:28 PM

You should really check out stop the tyhroid madness website. It has helped me a lot.
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#9 cassP

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Posted 08 May 2011 - 08:12 PM

yes- eating gluten free will really help any autoimmune disease- but we have no idea how much damage has been done to your thyroid- or how high your TPO abs are... or if you by chance also have Grave's abs..... like said above- this has to be monitored by an Endocrinologist- and that Endo should be checking ALL your numbers.. trust us- if you need to be on meds- it really is best. now i personally advise u find a doc who will test all your thyroid numbers and be willing to put u on a T4/T3 combo whether synthetic or natural.
now, it's possible that this great Gastro has a good referral- but you need to be with an Endo for your thyroid.
  • 0
1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#10 jstwnttbhealthy

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Posted 09 May 2011 - 06:09 AM

thank you so much cass. after reading your reply i've been looking for and endo in colorado springs and found one that looks promising - Dr. Juetersonke. however it looks like i would have to pay myself since i'm covered by Cofinity (they say they will help file with the insurance). do you have a ballpark figure of how much all that testing would be?
i've also seen in your signature that you're dx'ed for hashimotos and graves. it's possible to have both??
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Elisabeth

#11 padma

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Posted 10 May 2011 - 07:27 PM

thank you so much cass. after reading your reply i've been looking for and endo in colorado springs and found one that looks promising - Dr. Juetersonke. however it looks like i would have to pay myself since i'm covered by Cofinity (they say they will help file with the insurance). do you have a ballpark figure of how much all that testing would be?
i've also seen in your signature that you're dx'ed for hashimotos and graves. it's possible to have both??


Hi. I, too, have thyroid issues. When I finally found a good endocrinologist, Dr. Dan Purser, MD, in Utah, he finally figured it all out. Age has a lot to do with our endocrine system. Being gluten free did nothing for my thyroid. In my case, they are separate issues.

He did a full hormone panel, incl. progesterone, estriol, estrone, estradiol, free testosterone (yes, even for women), IGF-1 for pituitary function, T-3 and Free T-3 and T4 and Free T4. All of my hormones were low and I had been deficient for so long that my body would not use the thyroid I was taking. Weird.
So he put me on a much larger dose of thyroid for 3 months and after that put me on a more normal dose. If I understand right, the larger dose was suppose to make the cell receptor sites start working again. Whatever, it worked. I am on bio-identical hormones and Armour thyroid now, along with GH and I am feeling full of energy and emotionally balanced. Yah!
I have been told that "stress eats hormones", so keeping my stress levels low helps me keep my hormones balanced. One big stressor is getting into gluten.
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#12 padma

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Posted 10 May 2011 - 07:30 PM

Hi. I, too, have thyroid issues. When I finally found a good endocrinologist, Dr. Dan Purser, MD, in Utah, he finally figured it all out. Age has a lot to do with our endocrine system. Being gluten free did nothing for my thyroid. In my case, they are separate issues.

He did a full hormone panel, incl. progesterone, estriol, estrone, estradiol, free testosterone (yes, even for women), IGF-1 for pituitary function, T-3 and Free T-3 and T4 and Free T4. All of my hormones were low and I had been deficient for so long that my body would not use the thyroid I was taking. Weird.
So he put me on a much larger dose of thyroid for 3 months and after that put me on a more normal dose. If I understand right, the larger dose was suppose to make the cell receptor sites start working again. Whatever, it worked. I am on bio-identical hormones and Armour thyroid now, along with GH and I am feeling full of energy and emotionally balanced. Yah!
I have been told that "stress eats hormones", so keeping my stress levels low helps me keep my hormones balanced. One big stressor is getting into gluten.



I didn't read your whole post:
I have to pay for my labs and meds. The labs are around $400 each time. I really shopped for a lab where there was a doctor who was grandfathered into the old fee schedule. Otherwise, it would be over $1000! Ridiculous.
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#13 cassP

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Posted 10 May 2011 - 07:46 PM

thank you so much cass. after reading your reply i've been looking for and endo in colorado springs and found one that looks promising - Dr. Juetersonke. however it looks like i would have to pay myself since i'm covered by Cofinity (they say they will help file with the insurance). do you have a ballpark figure of how much all that testing would be?
i've also seen in your signature that you're dx'ed for hashimotos and graves. it's possible to have both??

yes it is possible to have both, and it is a PAIN in the A.

cost wise- you know how everyone charges differently and usually overcharges- ... i have catastrophic insurance- and they actually pay for 1/2 of my visit, and MOST of my labs.. it is pretty pricey. my visit is like 250 something.. and maybe 70 goes on my bill- and my labs are WAY overpriced BIG TIME- i think one is over 200... it is outrageous. but my insurance pays most. on top of that- i have my doctor's group put everything on one big bill- and i pay a little bit every month.

it's possible that if you dont have insurance, the doc could discount your bill..?? my manager is seeing a PCP or GP on no insurance for her thyroid, and she cuts her a deal- BUT she wont refer her or consider T3. :/

i really hate the state of our corporate medical system :/

Good luck to u!
  • 0
1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#14 jstwnttbhealthy

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Posted 16 May 2011 - 08:40 AM

thanks. i'll need all the luck i can get. i've called the doctor and the office visit alone will cost $275. i don't know what to do yet. i'll keep you posted after i have it figured out. thanks for all the help.
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Elisabeth


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