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

Hypothyroidism


keri-b

Recommended Posts

sdore Enthusiast

I have an underactive thyroid also. I have a autoimmune disease called hachimotos (<-sp). I have had this for years and have gone up and down in weight ever since.

I was diagnosed with celiac disease about a month ago. My doctor wants me to get my thyroid testes after 3 months of being on a gluten-free diet becasue he state dthat my thyroid med's might get absorbed differently now and we may have to change the dose. I wil let you know what happens.

Some symptoms of underactive thyroid:

cold all the time

very, very tired all of the time

hair loss

weight gain

  • 2 weeks later...

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



Celiac.com Sponsor (A8-M):



Lagomom Newbie

celiac disease and hypothyroid, here! Lupus, muscular neuralgia and RLS. Taking synthroid.

Hasn't helped me lose weight, though. gluten-free for 3 years with some improvement, but not as drastic an improvement as my kids. Must be something about being young, doncha' think?

Libby.

Cool in AZ

ms-sillyak-screwed Enthusiast

Hi my celiac disease and thyroid cyberspace friends!

I wanted to report back and let you know that the medication Levothroid, Levoxyl and Synthroid I was taking wasn't effective because it has ingredients that I can't tolerate because they were toxic to my system - Fillers binders, with corn, dairy and etc. Some of us celiac's can't do corn, rice, potatoes and dairy. Look into it... I know I can't after 4 years of being okay on a regular gluten free and dairy free diet, or I thought I was, until induced by major stress my [celiac and thyroid problems] came back with and ugly vengence...

A wonderful guy on this site suggested I contact a compound pharmacist. They are not your ordinary pharmacists, they make what you need pure and free of the fillers and binders that are in regualr drugs. I guess our bodies have to work twice as hard when the drugs we are taking to make us better, are poison to us too.

Think about it!

I have only been on them a few weeks and I do see an improvement. I'll report back in a while and let you know. But I do think it's worth looking into.

  • 3 months later...
ms-sillyak-screwed Enthusiast

Hi my celiac disease and thyroid cyberspace friends! It's me again Ms Sillyak Screwed.

Well, I'm back to report about the thyroid RX I was taking.

www.compoundingdocs.com/ Great staff, beautiful shop, like old world style. COMPOUNDING DOC's RX was far better then the Levothroid, Levoxyl and Synthroid I was taking. My nervous system felt like I was wound-up too tight and plugged in to electric current on the synthetic RX. Yeah! I was wired. This stuff is like s-p-e-e-d w-o-w !!! I've been hyper all my life, but this stuff c'mon.

Anyway, all kidding aside, the compounding doc was out of town one long weekend and I was without medication as a result was forced to go back on the stuff poisioning me Levothroid, or it was Levoxyl, you know, the generic for Synthroid. I was wired! They say that generic synthetic stuff is not calabrated or stable doses, that's why I felt so bad and plus that it contains corn.

Over the weekend I read a super book "LIVING WELL WITH HYPOTHYOIDISM" got a grip on why Doc's don't want us to be well, and how to get better. And about alternative RX with out gluten, corn, rice or potatoes.

I asked my endro doc if I could take NATURE THROID, she's clueless prescribes a tripple dose, the Walgreens pharmacist caught it, questions me, and wouldn't despence it to me. I called the drug lab they are wonderful gave me the comparison. Not the same, synthetic is mcg and nature is grains. My doc then under prescribed the next time. With the mix up the new COMPOUNDING PHARMACY called "SKIPS" Oh here is his web site, www.skipspharmacy.com/ in Boca Raton Florida.

I found a new doc that's great DR. ALBERT ROBBINS in DEERFIELD BEACH, FL. I have been on the NATURE THROID two days. I already notice my nervous system feels calmer and relaxed, more natural feeling, not like I was being p-o-i-s-o-n-e-d & d-r-u-g-g-e-d. The new RX it will take a while to know, I'll go for a blood test in a week and see where my levels are.

The Doc seem to think I can be treated for my food alergies with shots twice a week for life...

So this is a life time thing? Oh, my! [giggle] Can I eat wedding cake now? [giggle]

Get my head out of the clouds, you say?

ms-sillyak-screwed Enthusiast

Hi Celiac & Thyroid Cyberspace Friends!

Well, I'm back to update you on my experience with NATURE-THROID.

After taking it I found out I'm allergic to PORK. Upset my tummy. So on to the next one... :huh:

If any of you have ideas or other options PLEEEZE write...

The generic LEVOVYL is unstable. There was some kinda class action suit.

CYTOMAL = cornstarch & lactose

THYROLAR = corn & lactose

NATURE-THROID = pork

ARMOUR THYROID = pork

I wonder how Celiac (intolerant of corn & dairy) people do on regular SYNTHROID, made GLUTEN DAIRY & CORN FREE by a compounding rx? Anyone out in celiac cyberspace have experience on this one?

emeraldskies Rookie

That is quite a dilemma, ms_sillyak_screwed. I found that Levoxyl bothered me the least of the T4's - I was on Synthroid awhile and developed hives, but I am not lactose intolerant and have a casein allergy instead. Nutri-Meds does make a bovine version of their thyroid extract. I stopped taking it when they had potency issues, but it doesn't look like you have many options, so it could be worth a try. I've never tried a compounding pharmacy.

  • 4 weeks later...
bluelotus Contributor

Hi ms_sillyak_screwed,

I have hypothyroidism, celiac disease, and am corn, dairy, and egg sensitive. I have been on Synthroid for a while now and it doesn't seem to cause any problems. Good luck.


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



Celiac.com Sponsor (A8-M):



julie5914 Contributor

I have never been on thyroid medicine, and I wonder if it would help. I have the neurological problems, weight gain (10-15lbs), cold all the time (friends call me a reptile), hair falling out more than usual, acne, lump in throat. Like many others of you though, I keep getting "normal" lab results and a dead end. It's quite confusing.

I wish they would just let me try the meds at a low dose and play with dose to see if I feel better or worse.

Rachel--24 Collaborator

I had radioactive iodine treatment for Graves Disease...after the treatment I went Hypo, started Levothroid and have had normal levels since. Thing is I never felt normal and had every Hypo symptom there is. Cold, dry hair, dry skin, fatigue...and the list goes on. I kept complaining and my Endocrinologist just kept telling me that the labs were normal so my problems were not thyroid related. I was stubborn so I started playing with the doses...increasing them...and trying different brands. I eneded up on Armour thyroid and taking 3 x what I was prescribed. My labs showed I was very Hyper and my endo. was not happy with me. Anyways my symptoms were still the same...nothing had changed even with the huge dose increase. It ended up being the gluten that was causing those symptoms I just didn't know it till only last month. A simple change in diet was all it took to see a difference.

Firegirl43 Contributor
My 19-year old will be seeing a gastroenterologist for the first time on Monday.  We are pretty sure she has celiac disease.  She already has complex partial seizures, which from my research seem to indicate that it is related.  I am also wondering about hypothyroid, as she can't seem to lose weight and has some of the other issues.  Anyone out there able to relate?

<{POST_SNAPBACK}>

I was diagnosed with hypothyroid when I was in the 3rd grade. I could never lose weight. I got diagnosed with celiac about a month ago Im now 24.

ms-sillyak-screwed Enthusiast

Hi all! :D

Interesting about our thyroid and the effect with food.

I did the same and played with the meds, I found that I can't tolerate the NATURE-THROID either because I can't tolerate the PORK. I will say I didn't feel wired or hyper, more natural over all but my digestion was totally off.

Now I've been taking the LEVOXYL 100 sometime 125. Not the compound anymore. Only with the hurricane mess and excitement with Katrina running across south Florida, I again with out power. The Compounding RX has to be refrigerated. The new doc said the NATURE-THYROID has to be kept in the fridge too.

It's all confusing because from what I understand the compounding RX uses a generic T4? hormone. Everything I read said the generic is unstable. The new doc said NO WAY. I don't know anymore... :rolleyes:

But today I finally got my food alergy test results back I posted them on my new blog.

Check it out... too long to list here.

Open Original Shared Link

Rachel--24 Collaborator
The Compounding RX has to be refrigerated. The new doc said the NATURE-THYROID has to be kept in the fridge too.

Open Original Shared Link

<{POST_SNAPBACK}>

Is Nature-thyroid the same as Armour thyroid? I've never refridgerated my Armour...I never heard you were supposed to and it doesn't say anything like that on the bottle or on their website. :huh: Hmmm..now I will have to call my Endo and find out.

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. - cristiana replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    2. - trents replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    3. - Theresa2407 replied to Theresa2407's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Probiotics

    4. - KathyR37 replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    5. - Scott Adams replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,814
    • Most Online (within 30 mins)
      7,748

    ColbyBowlin
    Newest Member
    ColbyBowlin
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      Hi @KathyR37 and a very warm welcome here.  I am so very sorry that you are going through all of this. I just wanted to check, have you ever been tested for any other gastrointestinal conditions? Cristiana  
    • trents
      @KathyR37, I would suspect that in addition to gluten intolerance, you have other food intolerances/sensitivities. This is very common in the celiac community. The most common offenders are oats, dairy, soy, corn and eggs with dairy and oats being the big two. Have you considered this? Have you tried keeping a food diary to detect patterns?
    • Theresa2407
      thank you for your advice.   I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated.  I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    • KathyR37
      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and  gloves when cooking for them. One huge problem I have is a gag reflex out of this world and if something doesn't taste good it is not going down. Most commercially made breads and such taste like old cardboard.Pastas are about the same. I did find one flour that I like and use it regularly, but it is so expensive! All gluten free food is way more expensive. I only eat twice a day because I cannot afford to buy all that. We live on a very low income so my food purchases are quite limited.
    • Scott Adams
      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
×
×
  • 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.