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

Another Thyroid Thread

Roda

By Roda
in Related Issues & Disorders

Recommended Posts

Roda Rising Star
Roda
Posted

I was doing some reading and wanted to know a little more about RT3 testing. I never realized what it actually was or meant until today. The more I read the more I'm convinced I need this looked into. When I first started with my current endocrinologist she made comment that I didn't convert the T4 adequately to T3 so she put me on cytomel in addition to my levothyroxine. For the most part I have always had to go up in my dosage of T4 to keep symptoms at bay over the years. I'm beginning to think I have a reverse T3 problem and plan to discuss this with her next month. If so, then I want to inqire about treating it with T3 meds only instead of the combo. I'll leave all the testing to be done at her office, since everytime I have something "out of the ordinary" my lab for my insurance seems to get things wrong. I know others on here are having issues with thyroid and not being able to get things just right so I thought I would share some info. Here are some links I was reading:

Open Original Shared Link

Open Original Shared Link

Edit: I am interested in hearing from anyone that has tried the T3 only.

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

Celiac.com Sponsor (A8-M):


cassP Contributor
cassP
Posted

thanks for the links... will study them later after work.

i felt absolutely worse on the T4 alone- and luckily found a good endo who put me on a combo which made all the difference. from everything ive been researching: most women do no convert the T4 to T3 as adequately as men do. i also just found out that i have Grave's in addition to the Hashimoto's.. and maybe THAT is why i felt so bad on just T4.

i suggested to my Endo on the last visit about possibly only taking T3 (as i have seen some members on here do)- and she wasnt thrilled about it... but maybe with the Grave's dx, things will change? but i dont know..

and my next 2 labs ive got have the RT3 test added to my thyroid panel- im so happy she put it on there- it may help us understand me even more... cause this has been quite a bumpy ride :( im now on 60mg Armour, which i dont feel is quite enough... and yet this morning even before i took my pills i was having palpitations :(

burdee Enthusiast
burdee
Posted

I was doing some reading and wanted to know a little more about RT3 testing. I never realized what it actually was or meant until today. The more I read the more I'm convinced I need this looked into. When I first started with my current endocrinologist she made comment that I didn't convert the T4 adequately to T3 so she put me on cytomel in addition to my levothyroxine. For the most part I have always had to go up in my dosage of T4 to keep symptoms at bay over the years. I'm beginning to think I have a reverse T3 problem and plan to discuss this with her next month. If so, then I want to inqire about treating it with T3 meds only instead of the combo. I'll leave all the testing to be done at her office, since everytime I have something "out of the ordinary" my lab for my insurance seems to get things wrong. I know others on here are having issues with thyroid and not being able to get things just right so I thought I would share some info. Here are some links I was reading:

Open Original Shared Link

Open Original Shared Link

Edit: I am interested in hearing from anyone that has tried the T3 only.

I've been on T3 only for over 2 months. I take 5 mcg generic liothyronine 2x daily (when I first get up and one hour after lunch). Here's how we decided T3 only worked best for me:

After my initial thyroid tests showed I had high TSH and low normal range T4, my doc started me on 50 mcg Levoxyl. I had read that T4 takes awhile to improve my hypothyroid symptoms (chronic constipation, fatigue, low body temperature, etc.). However after 2 months I only noticed slight increase in temperature and energy and no improvement in regularity. So my doc told me to increase my T4 (Levoxyl) from 50 to 75 mcg. After 3 days I had strong hyperthyroid symptoms (palpitations, overheating) but STILL no improvement in regularity.

So I requested tests for total T3, total T4, free T3, free T4, TPOab (thyroid perioxidase which indicates Hashimoto's antibodies) and TSH. Those tests showed that my TSH was low normal, my T4 results were normal, but my total and free T3 were very low and TPOab was high normal. So my doctor agreed (with my suspicion) that I don't easily convert T4 to T3.

Then I added T3 (10 mcg daily) to my 50 mcg of T4 and did well (felt warmer, more energetic and no constiption). However, I later began taking Low Dose Naltrexone (which improves immunity and autoimmune conditions). Then I experienced more hyperthyroid reactions, because the LDN lowered my need for thyroid hormone (by decreasing Hashimoto's antibodies). So we decided to just eliminate the T4 and stay on T3. I'm doing well on T3 only now.

cassP Contributor
cassP
Posted

SUE- i had YOU in mind when i asked my Endo if she would ever consider having me on T3 only... and tho, she's very nice, and openminded, she didnt like the sound of that.

my T3 & T4 numbers were GREAT when i was dx. (only my TSH off at 11.39)... and when i went on Synthroid ONLY- my T4 raised slightly and my T3 went down... and i felt manic.

when we added the Cytomel- my T3 went back to a high number.

eatmeat4good Enthusiast
eatmeat4good
Posted

Thanks to all of you for yet another "Thyroid Thread".

I found each of your posts very informative and helpful and I am grateful for the information.

  • 1 month later...
maile Newbie
maile
Posted

I've been on T3 alone since May 2010 and feel far better than on a T4/T3 combo (natural or synthetic)25 mg of T3 is supposedly equivalent to 1 grain of natural dessicated thyroid.

www.holtorfmed.com is another spot that discusses RT3 and how to treat

if you suspect you have RT3 or thyroid resistance you may also want to check out "hypo-pituitary" as well as the two can be related.

Roda Rising Star
Roda
Posted
  • Author

It's been almost two weeks and I'm still waiting on my results of a barrage of blood work my endocrinologist ordered. Even if everything comes back alright we discussed changing my t4/t3 dosage around with less t4 and more t3. It's not that uncommon with this doctor to wait this long for results. Hopefully this week I'll know something...

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      129,965
    • Most Online (within 30 mins)
      7,748
    Susan Allsopp
    Newest Member
    Susan Allsopp
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Newly diagnosed, struggling

      By Wheatwacked · Posted

      Hello @CeliacNew, If you are Vegan to help you feel better, reconsider returning to omnivore.  Actually, since you are already on a very restrictive diet, transitioning to gluten free might be easier for you.  Read the ingredient labels, Particularly vitamin D and Choline require supplements for vegan diet because our primary source is sun, eggs and beef.  B12 also.
    • Wheatwacked
      Multiple symptoms and mixed provider responses

      By Wheatwacked · Posted

      Once you've completed testing and still don't have improvement, start a trial gluten free diet.  Looking for imprvement that may indicate Non Celiac Gluten Sensitivity, which is 10 times more prevalent than Celiac Disease. Deficiencies in vitamins B6, B12, D, and C can manifest as skin rashes.  Virtual guaranty you are deficient in vitamin D.
    • cameo674
      Help vetting HLA-DQ typing provider

      By cameo674 · Posted

      So those rs numbers tell researchers where the dbSNP is located in a Genome so that other reasearchers or an AI system can look in that specific spot for that Snip of information.  You can look those rs # s by pasting the numbers after rs into the lookup on this page https://www.ncbi.nlm.nih.gov/snp/ right under the Blue header bar at the top of the webpage.  Since you are not a researcher, I do not know how this will help you though.
    • cameo674
      Finally got in to doctor to get my referral and I lucked out and got into Gastro the same day - question about different transglutaminase results

      By cameo674 · Posted

      So I posted here once before, and everyone advocated that I get into a GI doc.  I finally got into my functional health appointment on 6/16 to get my blood results evaluated and get the Gastro referral. I was told that I would be fortunate to see a gastro doctor by December, because of the number of people waiting to get in, but they did believe that I needed to see a GI doc among others.  Well, the stars aligned. I got home. I looked at MyChart and it showed an appointment available for later that same day. I never clicked so fast on an appointment time. The gastro doc ran some additional blood work based off the December values that had confirmed my daughter's suspicion that I have undiagnosed stomach issues.  Gastro has also scheduled me to get an upper endoscopy as well as a colonoscopy since it has been 8 years since my last one. She said it would rule out other concerns if I did not show Celiac per the biopsies.  Those biopsies will not occur until August 29th and like everyone here stated, Gastro wants me to keep gluten in my diet exactly as everyone suggested. To be honest, I was barely eating any gluten since I figured I would have plenty of time to do so before testing.  Doc is also looking for the cause of the low level heartburn that I have had for 30 years.  I have mentioned the heartburn to PCPs in the past and they always said take a tums or other OTC drug.  The upper endoscopy is for ruling out eosinphilic esophagitis, h. pylori, and to biopsy the duodenal bulb and second portion to confirm or exclude celiac. The colonoscopy will have random biopsies to rule out microscopic colitis. I didn't really catch her reasoning for the bloodwork.  Doc looked at the December numbers and said they were definitely concerning for Celiac.  She also said, “Hmm that’s odd; usually it’s the reverse”, but I did not catch which result made her say that. She seems very through.  She also asked why I had never bothered to see a GI before.  To be honest, I told her I just assumed that the heartburn and loose stool were a part of aging.  I have been gassy since I was born and thought constantly passing gas was normal?  Everyone I know with Celiac have horrible symptoms that cannot be attributed to other things.  They are in a lot of stomach pain.  I do not go through that.  I attribute my issues to the lactose intolerance that comes with aging, but have slowly been eliminating foods from my diet due to the heartburn or due my assumption that they did not agree with a medication that I was prescribed. I have already eliminated milk products especially high fat ones like ice cream; fats like peanut butter; acids like citrus and tomatoes; chocolate in all forms; and breads more because it is so hard to get in 100 grams of protein if I eat any foods that are not a protein.  I would not have even done the testing if my daughter had not brought up the fact that she thought I might have an undiagnosed condition since she has issues with bloating and another sibling has periodic undiagnosed stomach pain that GI docs throw pills at instead of helping.  Who knew that Bristol scale 5 and 6 were not considered normal especially multiple times a day? I watched my MIL go through basically the same bowel changes starting at 50 so to be honest, I really did think it was normal before this week's appointment.   December 2024's blood tests ran through Quest Labs were:  Deamidated Gliadin (IgA) 53.8 U/mL Above range >15.0 U/mL; Deamidated Gliadin (IgG) >250.0 U/mL Above Range >15.0 U/mL; Tissue Transglutaminase (IgA) 44.0 U/mL Above range >15.0 U/mL; Tissue Transglutaminase (IgG) <1.0 In range <15.0; Immunoglobulin A (IgA) 274 mg/dL In range 47-310 mg/dL 6/16/25 bloodwork:  Until today, I did not really know what all the four tubes of blood were for and since I did not understand the results, I got into the clinical notes to see what was ordered, but it did not exactly explain why for everything. Immunoglobulins IGG, IGA, IGM all came back in range:  IGG 1,010 mg/dL In range 600-1,714; IgA 261 mg/dL In range 66-433 mg/dL; IGM 189 mg/dL In range 45-281.  How do these numbers help with diagnosis? Google says she checked these to see if I have an ongoing infection? I do have Hashimoto's and she did say once you have one autoimmune disease others seem to follow. Celiac Associated HLD-DQ Typing: DQA1* Value: 05; DQA1*DQA11 Value: 05; DQB1* Value: 02; DQB1-DQB11 Value: 02; Celiac Gene Pairs Present Value: Yes; Celiac HLA Interpretation Value: These genes are permissive for celiac disease.  However, these genes can also be present in the normal population. Testing performed by SSOP.  So google failed me.  I think these results basically say I have genes, but everybody has these genes so this test was just to confirm that there is a vague possibility?  Maybe this test result explains why I do not have the horrible symptoms most individuals with celiac have?  I told the GI my assumption is that I am just gluten intolerant since I do not have the pain? So maybe this test explains why I have antibodies? Comprehensive Metabolic Panel: Everything was in the middle of the normal range.  Google says this just says I am metabolically healthy. Tissue Transglutaminase ABS test results – Done by the Mayo Clinic’s Labs –  T-Transglutaminase IGA AB --Value: 3.1 U/mL – Normal Value is <4.0 (negative) U/mL; Tissue Transglutaminase, IgG -- Value: 15.3 U/mL High -- Normal Value is <6.0 (Negative) U/mL – Interpretation Positive (>9.0) – These are the only labs the GI did that have been labeled Abnormal.  I am confused at how/why these came back different than the December labs? Because these numbers seem to be the opposite of what the were in December and I know I have eaten less gluten.  They were definitely measured differently and had different ranges. This must be why she said they are usually opposite? Molecular Stool Parasite Panel said I was Negative for Giardia Lamblia by PCR; Entamoeba Histolytica by PCR and Cryptosporidium Parvum/Hominis by PCR.  So at least I do not need to do a parasite cleanse like everyone on TikTok seems to be doing. So I guess, I am just really asking why the Tissue Transglutaminase numbers are different.  Was it because they were truly different tests? Is it because I have not consumed the crazy amount of gluten one is suppose to eat prior to testing? To be honest, I thought that was only for the biopsy testing. I generally only eat twice a day, and the thought of eating the equivalent of 6 slices of bread is daunting. Even in my youth, I probably only consumed the equivalent of maybe 3 slices a day. Like I said before, now I usually focus on trying to eat 60 gram of protein.  I am suppose to consume 100 grams, but have failed to succeed. I will focus on eating gluten starting in July now that I know my procedure date.
    • Scott Adams
      Worried about being isolated

      By Scott Adams · Posted

      I agree with @trents and wiping down the spot you eat your lunch, and eating the food your brought from home should be safe for even sensitive celiacs. Gluten can jump on your food, so it would likely better better for you to continue eating where you prefer.
×
×
  • Create New...