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. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    2. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    3. - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

    4. - David Blake commented on Scott Adams's article in Product Labeling Regulations
      1

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

    5. - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

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

    • Total Members
      133,343
    • Most Online (within 30 mins)
      7,748

    emoryprose
    Newest Member
    emoryprose
    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

    • asaT
      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
×
×
  • 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.