Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Newly Diagnosed Hashimoto's Disease

Newbee

By Newbee
in Related Issues & Disorders

Recommended Posts

Newbee Contributor
Newbee
Posted

A little over a year of being gluten free and found out my thyroid has now gone bad (hashimoto's disease). I asked for more than just the TSH they wanted to give me. All tests turned out significantly messed up so probably didn't need all of them but I thought it was interesting that thyroid peroxidase antibody came out really high (493 where normal would be less than 35). Clearly my body has been attacking my thyroid after I pulled out the gluten. My mom told me she thought I should find an endocrinologist to manage the disease with instead of my GP who is clueless and quitting as of this week. I've heard most endocrinologists treat diabetes and don't know much about thyroid. For those of you with thyroid issues, what kind doctor do you see? Also anyone know if the generic levothyroxine at Walgreens is gluten free? I'm trying to call the manufacturer but apparently when I called was past their operating hours so have to wait. So I'm curious to know! Thanks all!!!

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

Celiac.com Sponsor (A8-M):


pricklypear1971 Community Regular
pricklypear1971
Posted

It really doesn't matter if its an endo, GP, or nd as long as s/he treats you to make you feel better rather than to normalize tsh.

Start here for docs in your area. Open Original Shared Link

Keep googling and following links and ask around. Start reading about Hashis, and keep copies of all your labs and dosages and meds. Make notes and keep track of how you feel. Talk to your new doctor about all of it. You'll be able to gauge pretty quickly if you're suited to each other.

Newbee Contributor
Newbee
Posted
  • Author

Thanks Pricklypear1971. I'm not sure which all of my vague symptoms are related to thyroid. My main complaint was thinning hair and heavy periods. Other things I'm not sure if they are unresolved celiac or something else. After trying the initial dose the GP gave me, when should I go back (GP didn't mention going back).

pricklypear1971 Community Regular
pricklypear1971
Posted

Well, at first my doc wanted to see me monthly (with labs each time). I personally thought that was a bit much (I did arrange to get my lab sheets at each visit so labs could be drawn prior to the following visit).

She upped it every month til she started seeing something she liked (not sure what that was). It took at least 6 months for my tsh to move down but I felt much better immediately.

I can tell you right now you need a new doc simply because none of this was discussed, and you're on t4 only. I pushed for combo therapy up front (benefit of mother who is hypo). T4 only can work, but a great number of patients feel better on combo therapy.

You need to start reading about being a thyroid patient.

Newbee Contributor
Newbee
Posted
  • Author

Good to know. My GP is clueless about treating anything beyond a cold. I'm trying to get into see someone who I've heard is good but can't get an appointment until March. What medicine are you on Pricklypear1971 that you like?

pricklypear1971 Community Regular
pricklypear1971
Posted

I've been on synthetic t3/t4 compounded, Armour (before reformulation), Nature-Throid, compounded natural thyroid, and back to Nature-Throid. I'm trying it again because I felt very good on it but had to switch because of a shortage of product a few years ago (big mess).

pricklypear1971 Community Regular
pricklypear1971
Posted

Another idea to find a good doc is to contact your closest compounding pharmacy and ask for a thyroid doc reco. Talk to the pharmacist, unless the person who answers the phone sounds unusually informed.

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

Celiac.com Sponsor (A8-M):


Newbee Contributor
Newbee
Posted
  • Author

Great idea! Thanks.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      126,012
    • Most Online (within 30 mins)
      7,748
    Lil Nugent
    Newest Member
    Lil Nugent
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.1k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • BertoleAmur
      Has anyone found Ozempic affected their symptoms?

      By BertoleAmur · Posted

      I’ve been gluten-free for a while too, and I know how frustrating it can be when your body reacts unexpectedly. I haven’t personally experienced what you’re describing with Ozempic, but I did have a situation where I took a break from certain supplements and noticed my body felt a lot better.
    • Scott Adams
      Muscle Twitching

      By Scott Adams · Posted

      Two of our moderators @knitty kitty and @Wheatwacked know a lot more about nutrients and may be able to offer some more help, so hopefully they will chime in here.
    • aperlo34
      Muscle Twitching

      By aperlo34 · Posted

      Hi Scott, thanks for the reply.    I’m currently taking  3000IU vitamin D3 centrum multivitamin  500mg vitamin C 1000mcg B12 naturemade softgel Omega 3 (for dry eyes) My latest labs for vitamins were D - 43.6 (range 30-100) B12 - 406 (range 232-1245) Folate - 11.4 (range >3.0) ferritin - 117 (30-400) magnesium - 2.3 (1.6-2.3) Calcium - 9.9 (8.7-10.2)   I am 29 and really struggling with this emotionally, I was caught by surprise 2.5months ago with this dx and pretty much no symptoms that I really knew of besides low ferritin. When I first met with the GI doctor in July and he ordered the endoscopy/colonoscopy, that was around when the twitching started. I’m unsure if it’s the anxiety of it all (I have been consistently freaking out since the scopes were ordered, losing sleep, obsessively googling etc.) or if it’s celiac related. I’m horrified that I might have something else wrong with me.  Additionally, I’ve been getting some mixed opinions - dietician told me to stop the additional b12 because my multi had b12, but I see online that some people think b12 levels should be well over 500.    Some other things that I’ve experienced since I went gluten free are more “sinus” headaches, facial pressure, some cramping in my left side (could be postural problems I’m dealing with) and dry eyes - my eye doctor has me on some eyes drops that really help and this is a work in progress. And no my mouth isn’t dry too 😅   I’m absolutely beside myself with fear of other AI diseases and have no one I can really turn to (besides online) that has dealt with this. I have no idea what’s in my mind and what is a real symptom anymore because I’m so hyper aware of every sensation in my body! Thank you so much in advance for any input/guidance.    
    • Yaya
      Muscle Twitching

      By Yaya · Posted

      I never had muscle twitching that I would relate to Celiac Disease (celiac disease).  However, I now have Long Covid and muscle twitching, burning, and other issues cropped up with that.  Predating all was restless leg syndrome (RLS).  Are you talking about RLS?  I've had that since '99.  It gets progressively worse.  
    • Scott Adams
      Muscle Twitching

      By Scott Adams · Posted

      Hello @aperlo34, what types of supplements are you taking? Your symptoms could be related to vitamin/mineral deficiencies.   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...