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

Please Help With Thyroid Test

jstwnttbhealthy

Recommended Posts

jstwnttbhealthy Newbie
jstwnttbhealthy
Posted

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.

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

Celiac.com Sponsor (A8-M):


jstwnttbhealthy Newbie
jstwnttbhealthy
Posted
  • Author

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.

ravenwoodglass Mentor
ravenwoodglass
Posted

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.

cassP Contributor
cassP
Posted

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 :)

cahill Collaborator
cahill
Posted

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.

jstwnttbhealthy Newbie
jstwnttbhealthy
Posted
  • Author

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 :)

cahill Collaborator
cahill
Posted

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 .

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

Celiac.com Sponsor (A8-M):


kimis Collaborator
kimis
Posted

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

cassP Contributor
cassP
Posted

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.

jstwnttbhealthy Newbie
jstwnttbhealthy
Posted
  • Author

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??

padma Newbie
padma
Posted

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.

padma Newbie
padma
Posted

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.

cassP Contributor
cassP
Posted

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!

jstwnttbhealthy Newbie
jstwnttbhealthy
Posted
  • Author

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.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      how much gluten do I need to eat before blood tests?

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for...
    2. catnapt
      - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      how much gluten do I need to eat before blood tests?

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I...
    3. trents
      - trents replied to McKinleyWY's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Accuracy of testing concerns

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal.
    4. Theresa2407
      - Theresa2407 replied to chrish42's topic in Doctors
      4

      Doctors and Celiac.com

      Our support groups in Iowa have tried for years to educate doctors and resource sites like this one. We have held yearly conferences with continued education classes. We have brought in Dr. Murray, Dr. Fasano, Dr. Green and Dr. elliott. In those many years we may have had 2 doctors attend. We sent them information, with no response. I talked to...
    5. Scott Adams
      - Scott Adams replied to suek54's topic in Dermatitis Herpetiformis
      4

      Awaiting dermatitis herpetiformis confirmation following biopsy

      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,255
    • Most Online (within 30 mins)
      7,748
    Christie Fassel
    Newest Member
    Christie Fassel
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
    • Theresa2407
      Doctors and Celiac.com

      By Theresa2407 · Posted

      Our support groups in Iowa have tried for years to educate doctors and resource sites like this one.  We have held yearly conferences with continued education classes.   We have brought in Dr. Murray, Dr. Fasano, Dr. Green and Dr. elliott.  In those many years we may have had 2 doctors attend.  We sent them information, with no response.  I talked to my personal doctor and she said their training for Celiac was to show them a skinny man in boxer shorts and a huge stomach.  Saying if you see this, it is Celiac.  If it isn't in their playbook then they don't care.  Most call it an allergy with no mention of our immune system.  There is so much false information on the internet.  Then people don't understand why they can't get well and are acquiring more immune diseases. I mention this site to everyone.  Scott has working hard for the Celiac community.
    • Scott Adams
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By Scott Adams · Posted

      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
×
×
  • 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.