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

Recommended Posts

Roda Rising Star

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

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

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

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

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

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

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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Jess270 replied to AnnaNZ's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      29

      Bitters for digestion?

    2. - cristiana commented on Jefferson Adams's article in Origins of Celiac Disease
      7

      Why Bananas No Longer Cure Celiac Disease

    3. - trents replied to Dawn Meyers's topic in Related Issues & Disorders
      23

      Vaccines

    4. - GeoPeanut replied to Dawn Meyers's topic in Related Issues & Disorders
      23

      Vaccines

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

      Celiac or Addison's complications? Can someone share their experience?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,060
    • Most Online (within 30 mins)
      7,748

    Vaughn Zellick
    Newest Member
    Vaughn Zellick
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.6k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jess270
      This sounds to me like histamine intolerance. Some foods have more or less histamine. processed or aged meats, fermented food like yoghurt or kimchi and bread (yeast), spinach, eggplant and mushroom are high in histamine. Other foods like tomatoes are histamine liberators, they encourage your mast cells to release histamine, which can also trigger the reactions you describe, flu like symptoms, joint pain, urinary tract irritation, rash, stomach upset, nausea, diarrhoea & fatigue. I had liver pain like you describe, as part of the intolerance is usually a sluggish liver that makes processing all the histamine difficult. There are multiple possible root causes of histamine intolerance, usually it’s a symptom of something else. In my case, leaky gut (damaged gut wall)caused by undiagnosed celiac, but for others it’s leaky gut caused by other things like dysbiosis. Some people also experience histamine intolerance due to mould exposure or low levels of DAO (the enzyme that breaks down histamine in the gut). I’d try a low histamine diet & if that doesn’t improve symptoms fully, try low oxalate too. As others have suggested, supplements like vitamin d, b, l-glutamine to support a healthy gut & a good liver support supplement too. If you’re in a histamine flare take vitamin c to bowel tolerance & your symptoms will calm down (avoid if you find you have oxalate intolerance though). Best of luck 
    • trents
      @GeoPeanut, milk is one of the better sources of iodine. Iodine is known to exacerbate dermatitis herpetiformis. Many people find that a low iodine diet helps them avoid dermatitis herpetiformis outbreaks. So, maybe the fact that you have limited your dairy intake of late is helping with that.
    • GeoPeanut
      Hi, I'm new here. Sorry for your troubles.herenis a thought to mull over. I recently was diagnosed with celiac disease,  and hashimoto's and dermatitis herpetiformis after getting covid 19. I eat butter, and 1/2 cup of Nancy's yogurt daily. I stopped all other dairy and  dermatitis herpetiformis is gone! I also make grass fed beef bone broth to help with myopathy that has occurred. 
    • trents
      Welcome to the forum, @KRipple! Sorry to hear of all your husband's health problems. I can only imagine how anxious this makes you as when our spouse suffers we hurt right along with them. Can you post the results from the Celiac blood testing for us to look at? We would need the names of the tests run, the numeric results and (this is important) the reference ranges for each test used to establish high/low/negative/positive. Different labs use different rating scales so this is why I ask for this. There aren't industry standards. Has your husband seen any improvement from eliminating gluten from his diet? If your husband had any positive results from his celiac blood antibody testing, this is likely what triggered the consult with a  GI doc for an endoscopy. During the endoscopy, the GI doc will likely biopsy the lining of the small bowel lining to check for the damage caused by celiac disease. This would be for confirmation of the results of the blood tests and is considered the gold standard of celiac disease diagnosis. But here is some difficult information I have for you. If your husband has been gluten free already for months leading up to the endoscopy/biopsy, it will likely invalidate the biopsy and result in a false negative. Starting the gluten free diet now will allow the lining of the small bowel to begin healing and if enough healing takes place before the biopsy happens, there will be no damage to see. How far out is the endoscopy scheduled for? There still may be time for your husband to go back on gluten, what we call a "gluten challenge" to ensure valid test results.
    • kate g
      Ive read articles that there is stage 2 research being conducted for drugs that will limit damage to celiacs through cross contamination- how close are they to this will there be enough funding to create a mainstream drug? 
×
×
  • Create New...