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

Blood Retesting For Hashimoto's


Di-gfree

Recommended Posts

Di-gfree Apprentice

I'm finally through my first week being on dessicated Thyroid (similar to Armour in U.S.) - I'm taking them sublingually to bypass my digestion. In 5 weeks, I'll be having my blood tested to check my levels to see where I go with the medication.

1. I'm on 30 mgs - should I stick with that until my blood work? I've heard not to stay too low for too long... but I'm not sure what to do.

2. Exactly what do I get checked? My doctor has t4, free t3, TSH, and CBC checked off on my blood lab requisition. Anything else I should get checked? Do I keep checking my antibodies?

I hope anyone who's experienced this can help me - thanks!


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



Celiac.com Sponsor (A8-M):



ShayFL Enthusiast

You generally should up your dose every 2 weeks in the beginning by small increments. I did 1/4 grain at a time (15 mg.). When I got to around 120 mg, the increases got longer apart. I am now up to 165 mg. It has taken me a year to get there....slowly. I had periods of being symptom free, but then they would come back. That is when I upped. My doctor let's me self dose.

I tested often in the beginning FREE T3, FREE T4, TSH and antibodies. But I have not tested in about 6 months now. My doc goes by symptoms and not labs.

georgie Enthusiast

I would be asking for a check on Antibodies too - and making sure the T4 test is Free T4. Does the CBC include a B12 and Iron test ?

30mg of thyroid is a very small amount. How do you feel ? If you still feel Hypo then you will probably need more. An average dose is 120mg or more. If you increase before your blood work make sure you tell the Dr - so he knows what dose you have been taking. And remember to not take any Thyroid meds on the day of the test.

Di-gfree Apprentice

Thank you, both. I'm writing down what to ask for in the tests, and will bring it to my doctor beforehand. Shay, I would like to self-dose myself, too. The dessicated thyroid tablets I'm taking (like I said, similar to Armour in the U.S.), come in 30mg tabs. I'm thinking of adding half a tablet (15 mgs, like you said) each time I up it. I'm hoping my doctor will go by symptoms and not numbers, too. I'm sensing he's number-oriented, though; but he's very open to my opinion, and goes along with my wishes, usually.

Georgie, I'll ask for the antibodies, too. No, the CBC doesn't include B12 and Ferritin. I just had those tested with the thyroid panel that lead to my Hashimoto diagnosis. Do you think I should be checking that each time, too? My B12 was low, but I've reversed that with sublingual B12; and my Ferritin is chronically low - it was 21 last time (up from the original zero (10 (!) years ago - it's taken 10 years! lol, though). Do you guys think Ferritin levels can be improved with the thyroid hormone treatment?

I know the 30mgs is a small amount, but it's my starting dose, and I've only been on it a week. Do you think we should start with even higher amounts? My pharmacist (after me asking him about increasing the dose) actually recommended I stay on 30 mgs for 6 weeks until I'm tested. This is contrary to everything I've been reading here and on the internet. I think I should add 15 mgs at 2 weeks?

How do I feel? Hmm... my energy level is low. I can't say I'm feeling fantastic. I wonder, though, I've been feeling badly for *so* many years, will I even recognize if I don't feel this way? If that makes sense. So, no, I can't say I'm feeling all that great. So, I know I need more. It's just when? And I was already thinking 15mg steps each time. I have to read stopthethryoidmadness again - I keep forgetting what to do when it comes to increasing the dose! (I blame it on my state of mind in correlation w/the Hashimoto's).

And thanks for the reminder to *not* take medication on the day of test.

georgie Enthusiast
I know the 30mgs is a small amount, but it's my starting dose, and I've only been on it a week. Do you think we should start with even higher amounts? My pharmacist (after me asking him about increasing the dose) actually recommended I stay on 30 mgs for 6 weeks until I'm tested. This is contrary to everything I've been reading here and on the internet. I think I should add 15 mgs at 2 weeks?

How do I feel? Hmm... my energy level is low. I can't say I'm feeling fantastic. I wonder, though, I've been feeling badly for *so* many years, will I even recognize if I don't feel this way? If that makes sense. So, no, I can't say I'm feeling all that great. So, I know I need more. It's just when? And I was already thinking 15mg steps each time. I have to read stopthethryoidmadness again - I keep forgetting what to do when it comes to increasing the dose! (I blame it on my state of mind in correlation w/the Hashimoto's).

Well....it sound like a raise is needed to me. 120mg is a fairly average dose ( maybe higher) and if you do the sums you will see it will take forever to get there if you only raise by 15mg every 6 weeks. Read sttm again but I think they suggest a faster increase than that - based on how Armour used to be used when it was the only medicine for HypoThyroid. The good old days ;) As you raise - split the dose over the day into 3 seperate doses... that helps. Keep a diary of symptoms for your Dr. Record everything and take a family member with you if possible to back up your claims.....

Archived

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

  • 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. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

    2. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

    3. - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

    4. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      2

      Heat intolerant... Yikes


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,152
    • Most Online (within 30 mins)
      7,748

    denise.milillo
    Newest Member
    denise.milillo
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
    • Scott Adams
      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
×
×
  • 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.