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

I'm Going To Cry


kimis

Recommended Posts

kimis Collaborator

In november I was dx with Hashimoto's and started 50mcg levothyroxine. After three days on the med I felt bad....constipation, edema, and what felt like a heavy heartbeat. I stopped and all went back to normal. I tried again 2 months ago, 25mcg unithroid, and it happend again. I took another break, and Monday I started with half a 25mcg pill...and I am starting to experience the same effects. I have no idea what could be happening. It's not anxiety and I doubt it has anything to do with my menstral cycle. The only explaination I can think of is some underlying condition that is triggered when I take thyroid hormones. But would 3 days on hormones make that much of a difference?

Please tell me what you think....even if you think I am being rediculous. I would really appreciate any oppinions, ideas, or experiences.


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



Celiac.com Sponsor (A8-M):



mindwiped Rookie

Yes, it can be the thyroid meds, and yes, just 3 doses can be enough for you to know there's a problem. I know the name brand Synthroid is gluten-free, I don't know about the others, that may need to be checked, also, there are different formulations for thyroid meds, synthetic vs natural, T3 only, T4 only, and T3/T4 combo pills, plus I think there are liquid and pill formulas, so you may need to go back to your Dr. and tell them what's happening and find out why you're having trouble. Constipation, or slow bowels may be due to gluten or not having enough of the thyroid med, since that will slow down your digestion. Also, the binding agent in the pill may just be one that slows your bowels, gluten or not. The edema and the heavy heartbeat, I don't honestly know, call your doctor.

GFtraingirl Newbie
In november I was dx with Hashimoto's and started 50mcg levothyroxine. After three days on the med I felt bad....constipation, edema, and what felt like a heavy heartbeat. I stopped and all went back to normal. I tried again 2 months ago, 25mcg unithroid, and it happend again. I took another break, and Monday I started with half a 25mcg pill...and I am starting to experience the same effects. I have no idea what could be happening. It's not anxiety and I doubt it has anything to do with my menstral cycle. The only explaination I can think of is some underlying condition that is triggered when I take thyroid hormones. But would 3 days on hormones make that much of a difference?

Please tell me what you think....even if you think I am being rediculous. I would really appreciate any oppinions, ideas, or experiences.

I agree with "mindwiped" - call your doctor again, or find another doctor who might try some other thyroid med's. There are so many different ones; and the binding agents and/or fillers in some of them could bother you, even if it is gluten free. My old thyroid med's (T3/T4 compounded) had to be lactose free. I would get sick within 2 or 3 days on a thyroid medicine with lactose filler; really sick, so bad that I had to go home from work. Not a lot of fun - I learned the hard way that finding a thyroid medication that agreed with my digestive system, was a huge challenge.

Ask around, do research on the Internet, and, if needed, get another doctor.

And, you are NOT being ridiculous... Keep asking questions, keep searching for answers and don't give up until you feel better.

  • 2 weeks later...
mindwiped Rookie

Just checking in on you, have you heard anything or figured anything out yet? Hoping for the best!

kimis Collaborator
Just checking in on you, have you heard anything or figured anything out yet? Hoping for the best!

wow....that is really nice of you . I think my body just needed time to ajust to something new. I am still on half a pill every other day, but the swelling has gone away. Next week I will bump myself up and hopefully I will start feeling like my old self again. Thanks.....

wowzer Community Regular

Just for your information the name brand synthroid can no longer be guaranteed that they are gluten free according to glutenfreedrugs.com

I started taking the generic form which is gluten free.

kimis Collaborator
Just for your information the name brand synthroid can no longer be guaranteed that they are gluten free according to glutenfreedrugs.com

I started taking the generic form which is gluten free.

okay thanks.....does that include Unithroid or is it limited to Synthriod? I guess that means you are taking Levothyroxine.


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



Celiac.com Sponsor (A8-M):



Mtndog Collaborator
wow....that is really nice of you . I think my body just needed time to ajust to something new. I am still on half a pill every other day, but the swelling has gone away. Next week I will bump myself up and hopefully I will start feeling like my old self again. Thanks.....

Oh- I'm glad you are feeling better!

I take Armour which is gluten-free. I tried Thyrolar and it didn't work very well.

loraleena Contributor
In november I was dx with Hashimoto's and started 50mcg levothyroxine. After three days on the med I felt bad....constipation, edema, and what felt like a heavy heartbeat. I stopped and all went back to normal. I tried again 2 months ago, 25mcg unithroid, and it happend again. I took another break, and Monday I started with half a 25mcg pill...and I am starting to experience the same effects. I have no idea what could be happening. It's not anxiety and I doubt it has anything to do with my menstral cycle. The only explaination I can think of is some underlying condition that is triggered when I take thyroid hormones. But would 3 days on hormones make that much of a difference?

Please tell me what you think....even if you think I am being rediculous. I would really appreciate any oppinions, ideas, or experiences.

I think this is similiar to Synthroid which does not work for many people Talk to your doc about Armour thyroid or Cytomel.

mindwiped Rookie
okay thanks.....does that include Unithroid or is it limited to Synthriod? I guess that means you are taking Levothyroxine.

I take the Levothyroxine, but DH is the household celiac, so I'm not as careful about checking my meds. If you get ahold of your pharmacist, either they can call the manufacturer, or get you the info to do so and check. Levothyroxine, is generic Synthroid, so if the manufacturer is making it 'off label' than you might have an issue, so I would call and find out. I'm glad to hear you're doing better!

Jenny (AZ via TX) Enthusiast

I take Armour, but when I first started, I felt horrible on it. Was also taking a compounded T3. I had accelerated heart rate and anxiety. I had to reduce my dose by at least half. Some of us have to start on really low doses and increase slowly. I hope you are feeling better.

mindwiped Rookie

Reading all this has made me feel so lucky. I got started on the name brand Synthroid, 25 mcg, and felt so well on it the doc upped me to 50, and ran the blood work to check my levels. By then the free samples ran out, and my insurance requires generics whenever possible, so I switched to the Levothyroxine, and never noticed a difference, which is not the normal from what I've read. I'm on the 75's now, and at least the thyroid part of my life feels so much better! I think with any medication, there are those who response wonderfully, and those that have more trouble. Take care, and I hope you get it all figured out for yourself!

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 Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,327
    • Most Online (within 30 mins)
      7,748

    dnamutant
    Newest Member
    dnamutant
    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

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.