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

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
      133,353
    • Most Online (within 30 mins)
      7,748
    ace14219
    Newest Member
    ace14219
    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

    • SilkieFairy
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By SilkieFairy · Posted

      It could be a fructan intolerance? How do you do with dates?  https://www.dietvsdisease.org/sorry-your-gluten-sensitivity-is-actually-a-fructan-intolerance/
    • Lkg5
      Unexpected gluten exposure risk from cultivated mushrooms

      By Lkg5 · Posted

      Thank’s for addressing the issue of mushrooms.  I was under the impression that only wild mushrooms were gluten-free.  Have been avoiding cultivated mushrooms for years. Also, the issue of smoked food was informative.  In France last year, where there is hardly any prepared take-out food that is gluten-free, I tried smoked chicken.  Major mistake!
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      my IGG is 815 IGA 203  but tTG-Iga is   <0.4!!!!!!!!!!!!!   oh my god- 13 days of agony and the test is negative?  I don't even know what to do next. There zero doubt in my mind that I have an issue with wheat and probably more so with gluten as symptoms are dramatically worse the more gluten a product has   I am going to write up the history of my issues for the past few years and start a food/symptom diary to bring with me to the GI doctor in March.   I googled like crazy to try to find out what other things might cause these symptoms and the only thing that truly fits besides celiac is NCGS   but I guess there are some other things I maybe should be tested for ...? like SIBO?   I will continue to eliminate any foods that cause me distress (as I have been doing for the past couple of years) and try to keep a record. Can anyone recommend an app or some form or something that would simplify this? I have a very full and busy life and taking the time to write out each symptom name in full would be tedious and time consuming- some sort of page with columns to check off would be ideal. I am not at all tech savvy so that's not something I can make myself ... I'm hoping there's some thing out there that I can just download and print out   do I give up on testing for celiac with such a low number? I am 70 yrs old I have been almost completely off gluten for the most part for about 2 yrs. I had a meal of vital wheat gluten vegan roast,  rolls and stuffing made from home baked bread and an apple pie- and had the worst pain and gas and bloating and odd rumblings in my gut etc - almost went to the ER it was so bad. I was thinking, since I'm spilling a lot of calcium in my urine, that perhaps this was a kidney stone (never had one before but there's always that first time, right?)    Saw my endo on Jan 20th and after hearing the story about the symptoms from eating that holiday meal, she suggested doing a gluten challenge. She said 2 weeks was fine- she said stopping it in the middle if symptoms got bad was fine- In the meantime I'd read that 2 weeks was not enough- called and argued with the nurse about this, but ultimately decided to stop the gluten on the 13th day and get the test done because I was in too much pain and almost suicidal and knew I could not continue.   so.............. that's where I am now I have had no bread since Sunday. I did have some rolled oats today and had some gas and bloating afterwards I did have some wheat germ in a smoothie on Tuesday and had a stomach ache later that night.   but overall I feel so much better! all the joint pain is gone! the nausea is gone. The stomach pain and gas and bloating are going away. Still a bit gassy but no more of that horrible odor. wow, that would clear a room if I was out in public!  I see a GI nurse March 4th  I hope she'll be able to help sort this out! can you think of what my next steps might be?
    • par18
      Is it gluten?

      By par18 · Posted

      Thanks for the reply. 
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
×
×
  • 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.