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

Help With Something Other Than Levothyroxine/t4

Skylark

By Skylark
in Related Issues & Disorders

Recommended Posts

Skylark Collaborator
Skylark
Posted

I don't feel like I'm really coming back from my thyroid flare-up. I'm dragging, depressed, cold (my teeth were chattering in 67 degree weather last night!!!), skin is still dry, and I am losing more hair than usual. I'm on a higher dose of synthroid right now and my TSH has dropped from 5.0 to 1.07. I feel better, but not well. I have an appointment with a different Dr. in my group and I want to ask for something with T3.

I've read that Cytomel is safer for hashis because you can have immune reactions to natural thyroid so I'm thinking I want to ask for cytomel or compounded T3. How would I go about getting the compounded stuff? If my Dr. wants to try Nature-throid where would I get that? I'm so used to just getting my bottle of levothyroxine I don't know where to start and I doubt my Dr. will know much outside of Cytomel. Should I just ask for that?

Any help would be appreciated.

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


georgie Enthusiast
georgie
Posted

T3 made all the difference to me ( and thousamds of others). No one takes it away from me....They would have to wrench it from my dead hands..

I prefer the tablets of T3 to the compounded. Just my experience is that I absorb the tablets better than capsules.

Take your Dr facts and insist on a trial. Don't ask but demand. The Dr is there to work FOR you ;) It may also be a good idea to get a Reverse T3 test done.

This is one of the latest studies for T4/T3 treatment.

in the new research, Danish researchers conducted a double-blind, randomized cross-over study -- which is considered the gold standard format for research -- of 59 patients. In the patient group, 50 micrograms of the usual T4 dose was replaced with either 20 mcg of T3 or 50 mcg of T4 for 12 weeks. The patients then did the "cross-over," doing the opposite for another 12 weeks. The T4 dose was regulated if needed to keep the TSH levels stable.

Tests for quality of life (QOL) and depression were performed at the start, and after both of the 12-week treatment periods. The quality of life and psychological factors evaluated included, among other factors: general health, social functioning, mental health, vitality, sensitivity, depression, and anxiety.

What the researchers found was that among the patients -- 55 of whom were women -- there were significant differences in 7 out of 11 of the QOL and depression scores, showing a positive effect related to combination T4/T3 therapy.

A total of 49% of the patients preferred the combination treatment, and only 15% preferred levothyroxine-only treatment.

The researchers concluded that, in a study where TSH levels were kept consistent, the T4/T3 combination therapy that included 20 mcg of T3 daily was superior to levothyroxine-only treatment, when evaluating for a number of quality of life measurements, depression and anxiety scales, and patient preference.

Open Original Shared Link

I don't feel like I'm really coming back from my thyroid flare-up. I'm dragging, depressed, cold (my teeth were chattering in 67 degree weather last night!!!), skin is still dry, and I am losing more hair than usual. I'm on a higher dose of synthroid right now and my TSH has dropped from 5.0 to 1.07. I feel better, but not well. I have an appointment with a different Dr. in my group and I want to ask for something with T3.

I've read that Cytomel is safer for hashis because you can have immune reactions to natural thyroid so I'm thinking I want to ask for cytomel or compounded T3. How would I go about getting the compounded stuff? If my Dr. wants to try Nature-throid where would I get that? I'm so used to just getting my bottle of levothyroxine I don't know where to start and I doubt my Dr. will know much outside of Cytomel. Should I just ask for that?

Any help would be appreciated.

Link to comment
Share on other sites
Roda Rising Star
Roda
Posted

I didn't even know about cytomel. I started with an encrinologist in 2007 (had not seen one since 2003 regular dr. took care of my thyroid, albeit not well) and she immediatly lowered my levothyroxine and added in cytomel. What a difference! I wish I had known about it years before. I don't ever want to go back to T4 alone. The T4/T3 combination works great for me. My endo said even though my TSH was good my free T3 was low and required the additional supplementation.

Link to comment
Share on other sites
Skylark Collaborator
Skylark
  • Author
Posted

I don't know whether my free T3 is low now. Damn doctor didn't test. :angry:

Link to comment
Share on other sites
georgie Enthusiast
georgie
Posted

Just keep fighting for what you believe...

OK, why doesn
Link to comment
Share on other sites
Skylark Collaborator
Skylark
  • Author
Posted

Woooohooooo!!!! This doctor is really, really good. (Not that the other is bad, just young.) He says in most of his patients T3 doesn't make a difference. Actually a bunch of his patients did not notice a difference switching to levoxyl during the Armour shortage. BUT... I'm to go to the lab for T4 and free T3 baselines and then start on cytomel. I have the scrip in my purse!!! He understands my feeling of not wanting to leave the cytomel stone unturned. He's also running some vitamin panels to make sure I'm absorbing my supplements and not deficient.

I'm so excited that this might work I hardly slept last night. :D

Link to comment
Share on other sites

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. sh00148
      - sh00148 replied to sh00148's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Nighttime Soiling (5 year old)

      Thanks. So something has come up on his blood tests and I have an appointment to discuss the findings on Monday. My son has been soya free and dairy free for a while as we did York food testing to check for allergies intolerances.
    2. cristiana
      - cristiana replied to sh00148's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Nighttime Soiling (5 year old)

      Hi @sh00148 I am so glad that your son is going to have a blood test next week. If the blood test is that soon, and he has been consuming normal levels of gluten up until now, he should have had enough exposure to gluten to test positive should you decide to stop the gluten immediately, as Scott suggest. However, one thing you may wish to change...
    3. Scott Adams
      - Scott Adams replied to Blue Roan's topic in Related Issues & Disorders
      2

      Lymph nodes in neck + thyroid issues

      It’s understandable to feel frustrated, especially when you’re managing celiac well but still experiencing new, unexplained symptoms. Many people with celiac notice sensations around the neck and jaw area, even without visible swelling. Sometimes, lymph node sensitivity or a tight feeling in the throat can linger as part of the body’s inflammatory response, even...
    4. Scott Adams
      - Scott Adams replied to StrongerThanCeliac's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      2 Separate Glutenings - Recovery Timeline?

      It sounds like you’re really going through it—accidental gluten exposure can definitely take a toll, and when it happens twice close together, it can feel like it drags on even longer. Many people find that each glutening is a bit unpredictable in terms of recovery, and it could take a little extra time if your body hasn’t fully cleared out the first expos...
    5. Scott Adams
      - Scott Adams replied to Therockfrog's topic in Related Issues & Disorders
      2

      Itchy skin, tingling in feet and scalp

      @Therockfrog, it sounds like you’ve been through so much, and managing these symptoms must be incredibly challenging. Tingling in your feet and scalp, especially after eating specific foods, can sometimes be related to histamine intolerance or even a sensitivity to certain food proteins, as you’ve suggested. Since you’ve already noticed patterns with glute...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      125,790
    • Most Online (within 30 mins)
      7,748
    Sesroach
    Newest Member
    Sesroach
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.8k
    • Total Posts
      68.9k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • sh00148
      Nighttime Soiling (5 year old)

      By sh00148 · Posted

      Thanks.  So something has come up on his blood tests and I have an appointment to discuss the findings on Monday. My son has been soya free and dairy free for a while as we did York food testing to check for allergies intolerances.     
    • cristiana
      Nighttime Soiling (5 year old)

      By cristiana · Posted

      Hi @sh00148 I am so glad that your son is going to have a blood test next week.    If the blood test is that soon, and he has been consuming normal levels of gluten up until now, he should have had enough exposure to gluten to test positive should you decide to stop the gluten immediately, as Scott suggest.  However, one thing you may wish to change in the short term instead/as well is to stop him consuming dairy products.  If he is a coeliac, he may have become temporarily dairy intolerant.  The tips of the villi, which line the gut and are damaged in coeliacs, produce lactase, an enzyme essential for the digestion of dairy.  If they are damaged it can contribute to diarrhea and gas.  I had this some months after my own coeliac diagnosis, and it improved no end when I gave up dairy for a while.  Once on a gluten free diet they heal, and most coeliacs can return to consuming dairy. I would have thought that with those bowel issues in a young child what is happening to him is entirely normal.    
    • Scott Adams
      Lymph nodes in neck + thyroid issues

      By Scott Adams · Posted

      It’s understandable to feel frustrated, especially when you’re managing celiac well but still experiencing new, unexplained symptoms. Many people with celiac notice sensations around the neck and jaw area, even without visible swelling. Sometimes, lymph node sensitivity or a tight feeling in the throat can linger as part of the body’s inflammatory response, even if your thyroid and other tests come back normal. It sounds like you’ve been thorough with testing and have seen multiple specialists, which is great. A few things might be worth considering: for some people with celiac, there can be lingering sensitivities to trace gluten, cross-reactive foods, or even certain environmental factors that can cause persistent inflammation. Since you’ve tried antihistamines and a humidifier, you might want to discuss options like different allergy medications or seeing an ENT specialist if you haven’t already. Some find that supplements (like anti-inflammatory options or probiotics) help support overall inflammation reduction, though you should always check with your doctor first. It’s frustrating when you feel the symptoms without an obvious cause, but trust your instincts—hopefully, with persistence, you’ll find answers and some relief soon.
    • Scott Adams
      2 Separate Glutenings - Recovery Timeline?

      By Scott Adams · Posted

      It sounds like you’re really going through it—accidental gluten exposure can definitely take a toll, and when it happens twice close together, it can feel like it drags on even longer. Many people find that each glutening is a bit unpredictable in terms of recovery, and it could take a little extra time if your body hasn’t fully cleared out the first exposure before the second one hit. Staying hydrated, avoiding other potential irritants (like alcohol and spicy foods), and resting can help ease the symptoms as your gut heals. Hopefully, things start to settle soon! In the meantime, it could be helpful to communicate with friends about specific brands to look out for, even when it’s hard to ask in the moment. Hang in there—hope you’re feeling much better soon! This article, and the comments below it, may be helpful:    
    • Scott Adams
      Itchy skin, tingling in feet and scalp

      By Scott Adams · Posted

      @Therockfrog, it sounds like you’ve been through so much, and managing these symptoms must be incredibly challenging. Tingling in your feet and scalp, especially after eating specific foods, can sometimes be related to histamine intolerance or even a sensitivity to certain food proteins, as you’ve suggested. Since you’ve already noticed patterns with gluten, nuts, and dairy, it might be worth looking into a histamine intolerance or mast cell activation syndrome (MCAS), where the body has an exaggerated response to histamine and other triggers, which can cause itching, tingling, and even high cortisol levels. This would explain why your symptoms change with seasonal pollen too. If you’re considering eating some of these trigger foods before seeing the allergist, it could help with identifying specific IgE reactions. However, since this can worsen symptoms, you might consider working with your doctor to approach this slowly, maybe introducing one trigger at a time. It’s great you’ve tracked your symptoms so closely—that detailed information will help the allergist a lot. In the meantime, perhaps continue with antihistamines, as sometimes trying different types (H1 and H2 blockers, for example) under guidance can make a difference. Hang in there! It sounds like you’re very close to finding the root of these reactions.
×
×
  • Create New...