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

icelandgirl

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icelandgirl Proficient
icelandgirl
Posted
  • Author

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!

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Gemini Experienced
Gemini
Posted

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
icelandgirl
Posted
  • Author

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
nvsmom
Posted

:)  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
icelandgirl
Posted
  • Author

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
Gemini
Posted

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
icelandgirl
Posted
  • Author

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...

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GF Lover Rising Star
GF Lover
Posted

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
icelandgirl
Posted
  • Author

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
GF Lover
Posted

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
icelandgirl
Posted
  • Author

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
nvsmom
Posted

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
icelandgirl
Posted
  • Author

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
icelandgirl
Posted
  • Author

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
icelandgirl
Posted
  • Author

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
cyclinglady
Posted

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
icelandgirl
Posted
  • Author

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
nvsmom
Posted

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
Gemini
Posted

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
icelandgirl
Posted
  • Author

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!

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