Jump to content
  • 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):

Hormones, Hashi's And Celiac- How Does This All Work Together?


icelandgirl

Recommended Posts

icelandgirl Proficient

Thanks Gemini...your responses are like a warm hug. They help so much. So ((hugs)) back.

I do agree that some of us are harder to treat. Not being a good converter isn't great. We'll see what he comes up with...I will definitely report back!


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



Celiac.com Sponsor (A8-M):



  • Replies 144
  • Created
  • Last Reply
Gemini Experienced

You run so close to what I experienced that I am interested in hearing what a bona fide endocrinologist has to say.  I still have problems with my T3 not being where it should. It's close, but no cigar.  I think I am a "not so great" converter myself and that's why I use T3 in my mix.  I really think emotions have a role to play with thyroid and the past year was not one of my better years.

icelandgirl Proficient

Hello...saw the endo. We're adding a tiny T3 to the mix. I reacted so badly to it before. So I'm getting a compounded 100 mcg of T4 with 1 mcg of T3. Retest in 6 weeks.

We had a long talk about how I'm feeling, etc. It seems that I need T3 but it went poorly last time so I'm worried. I also have a nasty cold and wasn't at my best for the appointment by any means.

Gemini...I'd love to hear more of your thoughts on thyroid and emotions. My last year and half have been rough.

Finally...my mom got her results today. TPOAb was 1547. Sounds like Hashis to me.

nvsmom Community Regular

:)  Yeah!  I hope you do better with it this time.  Keep a symptom journal track everything.  Write down how you are now, what is wrong  and such, and comment every day or two on how you are doing.  I sooo hope this works for you!

 

Are you spreading out your medication times? Some people on T3 find it helpful to take it 2, 3, or even 4 times in a day, while others are fine with once a day.  Something to consider.  

 

I would agree that emotions play a part too.  I haven't been at my best this past year either, and we have been out of work for half of it with some serious health issues hitting our family. Gaining weight, hair falling out, acne... Bad years are just bad in too many ways.  LOL :rolleyes:

 

Sorry about your mom's results.  :(

icelandgirl Proficient

Thanks Nicole...we will see. We've all been sick this week and my head is still so stuffed up. I'm waiting until Monday to start it. I react so strongly to medications and am feeling so cruddy. I don't want anything to make it worse. The plan is to take it once a day. I guess we will have to see how it goes.

((((Hugs)))) on your past year. It sounds like a rough one for so may lately. Really hoping 2015 is great!

I wasn't surprised about my mom. I encouraged her to get tested and sent her with a list of tests! Lol! It explains a lot over the years. 2 of her sisters have Hashis too. And as we've talked, we've diagnosed my grandmother (passed away a few years ago) with it. She was àlways on thyroid meds but we can see now, knowing what we know, how poorly treated she was. Interesting to see it from that perspective.

I'll keep you posted on how I do. Thanks so much for your encouragement!

Gemini Experienced

Hello...saw the endo. We're adding a tiny T3 to the mix. I reacted so badly to it before. So I'm getting a compounded 100 mcg of T4 with 1 mcg of T3. Retest in 6 weeks.

We had a long talk about how I'm feeling, etc. It seems that I need T3 but it went poorly last time so I'm worried. I also have a nasty cold and wasn't at my best for the appointment by any means.

Gemini...I'd love to hear more of your thoughts on thyroid and emotions. My last year and half have been rough.

Finally...my mom got her results today. TPOAb was 1547. Sounds like Hashis to me.

Yup.....Mom has Hashi's!  Pretty impressive numbers also.  :(

 

Thyroid underfunction will definitely affect your moods.  Hormones all play together to create a healthy state so when you are deficient in any one of them, you feel it.

Many people with depression may have an underlying thyroid problem but the docs never look into that.  I can tell when my thyroid is off for a number of reasons and one of them is mood/emotions.  Life will seem harder to deal with or you may find yourself more emotional over things that normally don't set you off.  I hope adding that tiny bit of T3 into the mix will help improve things and get rid of those symptoms.  That is what is needed.....the active thyroid hormone. That cold you were suffering with will take longer to go away if your thyroid is low so try taking that T3 right away.  I am hoping it works well for you!  :)

  • 1 month later...
icelandgirl Proficient

Hey again...

I'm continuing to struggle with my thyroid. Sigh...I've been on the compounded med for a few weeks now and I've had a headache every day. It's so frustrating. After crying about it last night I went in this morning to get labs done...A week earlier than planned. I need to see if anything is off with the numbers. Otherwise, either my body just does not like this medication or something new is wrong with me! Any thoughts?

Thanks thyroid friends...


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



Celiac.com Sponsor (A8-M):



GF Lover Rising Star

Hey again...

I'm continuing to struggle with my thyroid. Sigh...I've been on the compounded med for a few weeks now and I've had a headache every day. It's so frustrating. After crying about it last night I went in this morning to get labs done...A week earlier than planned. I need to see if anything is off with the numbers. Otherwise, either my body just does not like this medication or something new is wrong with me! Any thoughts?

Thanks thyroid friends...

Are you having the same reaction as the last time you added T3?  Usually it takes about 3 months to get a good read on how the med is effecting the thyroid.  Why is your Doc testing so often?  Just curious here hun, not criticizing.  Hs the Doc testing your Pituitary function?  (I can't remember all the tests you've had done)   Will be interesting to see this next set of results.  Have they done an ultrasound of the thyroid to see if it looks normal?  Just throwing out guesses here.  I having thyroid issues myself and it can be frustrating.  Try Excedrin Migraine for the headaches.

 

Colleen

icelandgirl Proficient

Hi Colleen...thanks for the response!

Last time I tried the T3 it was 5 mcg and I got chest tightness and D. This is 1 mcg in a slow release. No chest tightness, some D, every day a headache. I guess he likes to test 6 weeks after a med change? He has not tested pituitary function. I did have an ultrasound which found one small non suspicious nodule. I'm super frustrated. I know that too much thyroid med can cause headache as can liothyronine. But every day...urgh.

GF Lover Rising Star

Make sure and follow up on the Nodule in six months to make sure its stable, then every year.  Headaches suck, they really do.  Hang in there.

 

Colleen

icelandgirl Proficient

Thanks Colleen...I appreciate the encouragement. I've seen some increase in energy with this med, but it's not worth the daily headache. The past few months working with an endo don't feel like I've gotten anywhere in figuring out my thyroid. Other than that it doesn't work right.

nvsmom Community Regular

Oh no.  :(

 

Are you planning on giving it a bit longer? When I started on NDT I had D, but it eventually evened out... mostly.  

 

Could it be anything else?  I go through periods where I have headaches a lot.  I have no idea if it is linked to thyroid meds because it was so much worse before I went gluten-free.  Still, I have weeks where I always wake up with a headache (often in spring - like the past few weeks) which I suspect could be allergy related.  Weather (Chinook winds) will do it to me too.  Hormones too... and gluten.  Holding back a flu could do it too.

 

I hope it goes away soon. (hugs)  Constant headaches can wear you down. :(

icelandgirl Proficient

Thanks so much Nicole...really need the hugs!

Absolutely it could be something else...I just don't know what for sure. I do have terrible allergies, I'm certainly having hormonal issues (perimenopause)...I know that being hypo or hyper can give you a headache. I'm just lost right now. But the constant headache is wearing me down. I don't feel like I can be taking something for it every day so I just get through. I do yoga and meditation to try to help. I try to get good sleep, but this peri stuff has me waking up in the middle of the night drenched in sweat...nice right?

I just don't know. I'm interested to see my labs for sure. I'm still taking it for now. I did notice more energy and my husband noticed it too...like 3 days in.

I hate headaches...it's hard to have a good day with one...ya know? What do you do for yours? Does anything help?

Thank you again...

icelandgirl Proficient

Interesting turn of events. Got a message from my Dr that my TSH is elevated and he was sending in a prescription for an additional 25 mcg of levoxyl a day for me to take until my appointment on the 2nd. I called in and got a cancelation appointment from this afternoon. My results aren't posted yet so I have no idea what the TSH is. This is weird right? Or is this just the fun of Hashis? I was on 100 mcg of levoxyl before and now I'm on 100 mcg of levothyroxine with 1 mcg of liothyronine compounded. So I'm actually taking more medication overall. I'm so confused. How does this jump up and down like this in 6 weeks? Thanks for listening!

icelandgirl Proficient

Labs just in...

TSH: 8.16 (.45-4.5)

Free T4: 1.03 (.82-1.77)

Free T3: 1.9 (2.0-4.4)

Wow...

cyclinglady Grand Master

Yep! Hashi's can take wild swings. I have been running hyper lately. It is really frustrating! My swings were severe the last year leading on to menopause. I experienced perimenopausal symptoms for 13 years!

Night sweats: I bought large bath towels and kept a stack, plus a nightgown change on my bedside table -- I kid you not! Blow dryer left out with a nightlight on in the bathroom because sometimes I was chilled from drenched hair.

Migraines: only had two during that time period and never had them before or since.

Irritability: can blame that on celiac disease, thyroid or perimenopause

Wacky 30 day periods occurred only during the last year. Became severely anemic as a result.

Hot flashes: mostly after menopause.

HRT has been really helpful for me. Eliminated the night sweats. Made my life more manageable. Having insomnia does not make for a fun person. I was on bioidentical HRT on and off. Hubby was the first to mention that I should get back on them! Something to consider combatting the perimenopausal symtoms.

Take care!

icelandgirl Proficient

Thanks cyclinglady...it's so frustrating! I'm going through 2 pairs of pajamas a night and not getting good sleep for sure. A couple of weeks ago I yelled at my kids...never been much of a yeller. I felt so bad. I feel like I don't know my body anymore.

nvsmom Community Regular

Labs just in...

TSH: 8.16 (.45-4.5)

Free T4: 1.03 (.82-1.77)

Free T3: 1.9 (2.0-4.4)

Wow...

 

Wow is right.  You just can't get a break...

 

Years ago, almost decades ago (yikes), my TSH was swinging in and out of normal in a manner of days - it can be pretty nuts.  :(

 

Well... now you should consider if your symptoms (headaches) could be from going (more) hypo.   :wacko: Your FT3 is pretty dismal compared to your FT4... I wonder if that is your RT3's fault or just Hashi's run amok?  

 

If things don't improve on the increased T4, you may want to consider upping your T3.  When RT3 is messing with hormones (from what I understand, and I'm not super clear on this) it is often more effective to lower T4 and raise T3 - some even use T3 exclusively.  Hopefully T3 will agree with you and the headaches are from being hypo... and hopefully they are gone soon.

 

This site has some useful info, but she's not a doctor... It's like a grass roots thyroid movement.  LOL  Open Original Shared Link

 

(hugs)

Gemini Experienced

Labs just in...

TSH: 8.16 (.45-4.5)

Free T4: 1.03 (.82-1.77)

Free T3: 1.9 (2.0-4.4)

Wow...

Oy Vay! No wonder you feel like crap! I understand as my latest blood work showed a jump to 4.65 for my TSH that normally runs around a 1. My T3 is optimal and my T4 is off the scale low. I have almost needed a crane to get out of bed in the morning for work and it takes me about an hour to fully wake up. This was all a result of an experiment to appease my PCP's notion that I might be getting too much hormone because of my bone density. I told her I was fine with the dose as I had zero hyper symptoms but would give it a shot to see what happens. I only decreased by 1/4 of a grain and ended up with this. Now the uphill battle to get me back to where I was goes on. The thyroid is such a screwy organ........

icelandgirl Proficient

Thanks ladies...I appreciate it. I don't even get it. What is happening to my body?

I went in and saw the endo and had a truly disappointing appointment. He seemed annoyed that I was there as he had put a message in my patient portal saying one sentence...called in 25 mcg levoxyl to take with current meds until appointment. That was it. I called to get an explanation and didn't get a call back...prompting the appointment. So apparently I inconvenienced him...I don't know. I had such hope when I started seeing him, but my thyroid is in worse shape now, 6 months later. Disappointed for sure.

I don't know exactly what I'm going to do...I left he appointment so mad because he really talked down to me. All I want is to feel good. Is that so unreasonable?

He repeated my blood work while I was there too...In case it was wrong from yesterday? Because my reflexes were good and he thought my hands were shaky.

Thyroid problems stink!

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. - Aretaeus Cappadocia replied to nancydrewandtheceliacclue's topic in Super Sensitive People
      10

      Celiac flare years after diagnosis

    2. - Peace lily commented on Scott Adams's article in Latest Research
      2

      New Study Reveals How the Immune System Learns Which Foods Are Safe to Eat

    3. - nancydrewandtheceliacclue replied to nancydrewandtheceliacclue's topic in Super Sensitive People
      10

      Celiac flare years after diagnosis

    4. - Jmartes71 replied to Jmartes71's topic in Dermatitis Herpetiformis
      4

      Skin issues

    5. - Aretaeus Cappadocia commented on Scott Adams's article in Additional Concerns
      1

      This Common Blood Pressure Drug Can Mimic Celiac Disease Symptoms

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

    • Total Members
      134,061
    • Most Online (within 30 mins)
      10,442

    Francisco1007
    Newest Member
    Francisco1007
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • nancydrewandtheceliacclue
      @Aretaeus Cappadocia thank you for your reply and the link, that is very helpful to get a visual of just how small of an amount can cause a reaction. I know I am not consuming gluten or coming into contact with gluten from any other source. I will stop touching/tossing bread outside! My diet has not changed, and I do not have reactions to the things I am currently eating, which are few in number. My auto immune reaction just seems so severe. The abdominal pain is extreme. It takes a lot out of me. I guess I will be this way for the rest of my life if I ever happen to come into contact with gluten? I appreciate the help. 
    • Jmartes71
      Thankyou I did find out the Infectious disease is the route to go rather than dermatologist. I did reach out to two major hospitals and currently waiting on approval for one of them in Infectious Diseases to call me. I also did have implants ( I didn't know and sense not properly in my medical. Neither did surgeon)in 2006 and there was a leak 2023 during the same time I was dealing with covid, digestive issues, eyes and skin.Considering I " should  be fine" not consuming gluten/wheat, taking vitamins for sibo and STILL feeling terrible.It has to be parasites. I also take individual eye drops prescribed, could there be an issue there? Anyways my pcp thinks I need therapy because again they don't acknowledge my digestive issues because in my records it shows im fine, hintz the reason I had to go back to bay area hospital:(  I thought skin issues maybe sibo related but I feel and have seen and seriously trying not to think about it because it's disgusting. 
    • Aretaeus Cappadocia
      oops. I didn't see that before posting or I would have at least referenced it. The two recipes are pretty similar, but I think the newer one is a little simpler/faster. Next time though I will search more before posting.
    • Scott Adams
      I love Middle Eastern food and eggplant, and here is another version we shared some time back:  
    • Scott Adams
      The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.      
×
×
  • Create New...