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

Hashimoto's Thyroiditis


kimis

Recommended Posts

kimis Collaborator

My Dr. called yesterday to say my thyroid gland is enlarged and my bloodwork confirms Hashimoto's. He also said something that I had never heard before. His almost exact words were....Somewhere in your younger years you got a virus that got in to your thyroid gland. WTF did you say? I started the pills today and I see him in 7 weeks. I have to say I am a bit nervous taking levothyroxine due to all I have read on those thyroid sites, but I must give it a chance so I can decide for myself. I have had a strange feeling in my head, neck and chest all morning.....oh I hate starting new meds!!!!!! My imagination is sooooo much worse than any side effect!


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



Celiac.com Sponsor (A8-M):



Mother of Jibril Enthusiast

I've read that there lots of possible triggers for Hashimoto's... viruses, bacteria, puberty, pregnancy, trauma, food intolerances, etc... The strangest might be microchimerism; apparently, fetal cells have been found in the thyroids of people with Graves disease and Hashimoto's. That could explain why these disorders are 10X more common in women and why your body starts seeing your thyroid as "foreign." However, in my case... I definitely had symptoms of hypothyroidism LONG before I became pregnant.

I've been taking levothyroxine (100mcg/day) for about four months now. My labs (TSH, free T4, free T3) are all back to normal and I feel better than I have in years! I've made some other good changes too... vitamin D, no more gluten, no more corn... but levothyroxine is working for me. I know a lot of people swear by Armour. I'm sure for some people it works better than anything else. IMO, the most important thing is how you personally feel on the medication (whichever one you take).

ShayFL Enthusiast

Give the Synthroid a go. But if it doesnt work for you after a reasonable amount of time, dont be afraid to ask for Armour.

I do great on straight Armour, but my Sister uses a combo of Synthroid and Armour and feels amazing.

Thyroid is tricky and there is no one drug that works perfectly for everyone. There are many options both natural and synthetic. It can take awhile to get it right. So be patient.

And welcome to the club!

kimis Collaborator

WOW...a new club! Now I'm in two clubs, and 8 months ago I wasn't in any clubs at all. I know that many of you have more than celiac to deal with, and I know there is probably a connection between celiac and the other things. This forum has helped me countless times on issues beyond celiac, and everyone has been so comforting and helpful and especially sympathetic.

Back to the levothyroxine...did any of you feel kinda anxious taking it the first few days? I panic over things easily, and I can't tell if I am doing this to myself or what. I read about the side effects before, and I was afraid I might feel racy or have trouble falling asleep. The whole heart palpitation thing scares me the most. So, basically I am asking what your experiences were when you first started this or a similar drug, and how they changed over time. I know everyone is different, but it makes me feel so much better knowing....you know? Thanks again!

MaryJones2 Enthusiast

Thyroid medication dosage is notoriously hard to nail and it takes a while for your body to get used to thyroid medication. If you've only been on it a few days you might want to give it a week or two and if you are still having problems you might need to switch medications or adjust your dose. It often takes a few months for everything to plane out.

ShayFL Enthusiast

I had palps, severe anxiety and racing thoughts on Synthroid. It was so bad one night I called 911. I thought I was having a heart attack. The paramedics were so nice to me. But that drug didnt agree with me At ALL!! And I was on a very low dose. I took it for a month and then got off it.

Armour agreed with me straight off. But me and my Doc. started low 15 mg (1/4 grain) and upped it by 15 mg every 2 weeks when symptoms would return. I would feel better then after a few weeks get the hypo symptoms again. When I got to 120 mg (2 grains) the raises got longer apart. I would go about 2 months then between raises. Got to 195 mg (3 1/4 grains) but then I really started hammering my Ferritin to get it up to snuff and I got a little hyper recently. So have dropped down to 3 grains and feel very good today. Just hyperish for about a week. Then I caught on and realized that the increased Ferritin was making my thyroid conversion from T4 to T3 more efficient and I didnt need as much medication. I expect I will need to reduce again as I get my Ferritin to "optimal" levels.

It is a balancing act and it can change after you think you have the right amount. For instance some women need an extra 15 mg the week before their period as thyroid is reduced then. Some also need an extra 15 mg or so in the winter months. Cold affects your thyroid and conversion of hormones. Menopause will change your requirements for thyroid.

Some Docs wont change your dosage as long as you are in the "normal" range. Countless millions suffer because of this. Best to find a really good Holistic Doc. who specializes in thyroid/hormonal issues. Trust me. Worth it even if you have to pay out of pocket.

If your Ferritin is too low, it might be very hard to get to a good level of thyroid hormone.

Did they test your Ferritin?

Also, if you adrenals are deficient, you will get "hyper" feelings even on a very small amount of thyroid hormone (natural or synthetic). You wont actually be "hyper" but you will feel that way.

Did they test your cortisol levels?

Parathyroid hormone levels PTH?

Live2BWell Enthusiast

I was Dx with Hashimotos a year ago (give or take.) It's been a LONG healing process, and I have come to understand that treating autoimmune thyroid and healing is nothing like treating/healing hypothyroidism even though the medication is the same. It's been a complicated process. Hang in there!

I am on 100mcg of Synthroid and recently dignosed Celiac. I am having to make a total lifestyle change, but my health is slowly improving.

I am learning my triggers, which I still have autoimmune triggers (thyroid) despite medication.

Take care of you!


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



Celiac.com Sponsor (A8-M):



angelschick Apprentice

I also have Hasi, DX about 4 years ago. I am on Armour - synthroid did nothing for me at all. I didn't experience side effects, I didn't experience anything! LOL! I would suggest you poke around these sites -

www.realthyroidhelp.com

www.stopthethyroidmadness.com

It's a long process so try not to expect instant results. Hang in there!

Amy

kimis Collaborator
I was Dx with Hashimotos a year ago (give or take.) It's been a LONG healing process, and I have come to understand that treating autoimmune thyroid and healing is nothing like treating/healing hypothyroidism even though the medication is the same. It's been a complicated process. Hang in there!

I am on 100mcg of Synthroid and recently dignosed Celiac. I am having to make a total lifestyle change, but my health is slowly improving.

I am learning my triggers, which I still have autoimmune triggers (thyroid) despite medication.

Take care of you!

Jessica, What are autoimmune triggers?

Another question I have is...Why is Armor less common than levothyroxines? From the little I have read, it seems like Dr.s don't agree with giving it.

Roda Rising Star
My Dr. called yesterday to say my thyroid gland is enlarged and my bloodwork confirms Hashimoto's. He also said something that I had never heard before. His almost exact words were....Somewhere in your younger years you got a virus that got in to your thyroid gland. WTF did you say? I started the pills today and I see him in 7 weeks. I have to say I am a bit nervous taking levothyroxine due to all I have read on those thyroid sites, but I must give it a chance so I can decide for myself. I have had a strange feeling in my head, neck and chest all morning.....oh I hate starting new meds!!!!!! My imagination is sooooo much worse than any side effect!

I was diagnosed with Hashimoto's in 2000 during my 3rd but 1st suscessful pregnancy. I was already being treated for an underactive tyroid before I got pregnant with my oldest son. Found out about half way thru the pregnancy it was Hashimoto's. I am recently diagnosed with celiac in Oct. this year. I know everyone has different advice so you just need to sort it all out and decide what is best for you. You need to find a good endrcrinologist. Alot of your GP's don't like to treat or change dosage of meds if your levels are in "range". A good endocrinologist will adjust your meds more so on symptoms and they have a lower range that they go by when adjusting meds. I am currently taking 125 mcg of levothyroxine once a day and 5 mcg of cytomel twice a day. This is the first time that I have ever been on a combination of meds. The levothyroxine is T4 and cytomel is T3. My doctor likes this combination better rather than Armour (not sure if spelling is correct) since she thinks it is easier to regulate. I think it works better also.

The only time I have had adverse effects from thyroid medication was after the birth of both of my children. I was on levothyroxine only at the time. During the course of my pregnancy my dosage was adjusted up several times. After delivery I got very nervous, shakey and dropped weight really fast. I didn't need as much so it took awhile to lower the dosage back to where I was not overactive from it. Other than that I have no other problems with it.

Hang in there!

Rhoda

emcmaster Collaborator

I was dx with Hashimoto's 10 years ago, when I was 13, long before I got sick and even longer before I was dx Celiac. My thyroid antibodies were 30x the normal amount, which should have clued my doctors to Celiac when I did start getting sick. But that's a moot point now...

Anyway, I've been on levothyroxine or synthroid for many years, without a problem. I currently take 175 mcg/day. I also have a goiter.

Are you seeing an endocrinologist? I think it's really important to see someone who knows what they are talking about when it comes to thyroid. I've seen family practice docs to treat thyroid before and it has always resulted in my meds being adjusted and my feeling awful because it was too high or low. I currently see Dr. Steven Dofman in Dallas and he is one of the most highly regarded endocrinologists in the country.

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
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • 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.