Questions About Hashimoto's, Gluten, And Such

[JodyM75]

LOTS of questions about hypothyroidism and Hashimotos.  This might be long…..sorry...

 

My mother is hypothyroid and has been taking a replacement for it for at least 15 years (she is 72).  I don’t know the name of it, sorry.  Her dose has been adjusted downward a few times.  As far as I know, she has only had her TSH tested.  I’m almost positive my mom has Hashis but was never diagnosed.  I’m also almost positive she has celiac (she’s had D for years, bloating, gas, etc) but she’s not going to get diagnosed for that, either. 

 

I was diagnosed with celiac this past April and have been gluten free since May (I am 39).  I believe I am what is referred to as a Silent Celiac; I have never had the typical symptoms that most people report here, and in fact I can’t tell you what my symptoms were because I didn’t notice one iota of change when I took gluten out of my diet. 

 

My celiac diagnosis was a fluke; I had been researching gluten’s part in hypothyroidism before my endoscopy, which led me to reading about celiac.  I had a few of the symptoms of the 300 listed (in the U of Chicago’s list) which have not been alleviated on the gluten-free diet, so I asked the doc for the celiac biopsy, which came back with mild blunting and showing signs of celiac-related inflammation (I can’t remember the exact term).  My bloodwork a few weeks later came back totally normal, go figure.  They told me I must have been lucky and caught it early.  My food allergy test for the big 8 came back negative.

 

I decided to try out the Paleo diet and have been eating that way since July.  Lost 10lb so far (I needed it and more), and still don’t feel different.  I’m planning on trying the Autoimmune Protocol Paleo diet starting January.  I’m completely off grains and beans, vegetable oils, but I’m still eating dairy.

 

Back to hypothyroiditms/Hashi.  My TSH levels have been taken 4 times in the past 8 years and the results have always been 1.1-1.6.  In July it came back 1.6.  I do understand that TSH is actually a test for the pituitary hormone.  Even though my numbers are “normal,” I can’t help but think I’ve got something thyroid-related going on.

 

I’ve got low energy and fatigue and have for a while.  It got worse since November after a bout of bronchitis that required 2 rounds of antibiotics to clear up (and I wonder if that wasn’t my trigger for the celiac).  I’ve also had insomnia off and on for years which took a turn for the worse in the past few weeks.  I can get to sleep fine, but if I wake up in the middle of the night, I’m up.  I’m so tired today I’m barely functioning.  My intolerance to cold has gotten worse the past couple years, even in the summer, as has dry skin.

 

QUESTIONS:

Am I correct I can have normal TSH levels and still have Hashimoto’s?

Am I correct a gluten-free diet can halt or slow the progress of Hashimoto’s?

What is the treatment if you have Hashimoto’s but your TSH is normal? (This is my main question because I think this is what is going on with me)

Will being on a gluten-free diet affect the other thyroid-related tests?

Once Hashi's renders your thyroid inactive, what does it do?  Hashi's, I mean.  Does it continue to do anything?

Should everyone with Hashis or hypothyroidism be seeing an Endo?

Why don’t doctors test for Hashi?  I read somewhere they don’t because it really wouldn’t change their treatment for hypothyroidism, but….?

 

Thank you all so much!  Jody

[nvsmom]

I can only answer about Hashi's from my own experiences, and I'm not even sure that I have Hashi's because my TPO Ab has never quite exceeded normal. I do have other autoimmune diseases so I am assuming my thyroid doen't function well due to Hashi's.

 

Am I correct I can have normal TSH levels and still have Hashimoto’s?

It's possible but more people end up with an elevated TSH eventually. My lab's normal was 0.2-6.0, fifteen years ago I began to suspect Hashi's but my TSH was always "normal" or close enough to it, that my doctors kept telling me I was fine.  I wasn't.  I now know that it is MUCH more important to have your free T4 and free T3 in the 50-75% range of your lab's normal range.  Most hypothyroid patients feel best in that spot. Be aware that the frees can be "normal" at the bottom of the range and one can still be hypo - it happened to me.

 

Am I correct a gluten-free diet can halt or slow the progress of Hashimoto’s?

Some people find their med requirements drop when on the gluten-free diet because (I believe) the inflammation has gone and isn't exacerbating their Hashi's further.  I don't know (and doubt) if it can slow the disease.

 

What is the treatment if you have Hashimoto’s but your TSH is normal? (This is my main question because I think this is what is going on with me)

Hashi's patients are treated with thyroid hormones - T4 and sometimes T3 - if you are low in your free T's.

 

Will being on a gluten-free diet affect the other thyroid-related tests?

No. Not at all.

 

Once Hashi's renders your thyroid inactive, what does it do?  Hashi's, I mean.  Does it continue to do anything?

Not that I know of.... Maybe it does a little victory dance on the remains of the thyroid.  

 

Should everyone with Hashis or hypothyroidism be seeing an Endo?

If you can't manage the disese to you satisfaction through your GP, then I would see an endo.  In my city, no one with Hashi's sees an endo unless there is a major problem.

 

Why don’t doctors test for Hashi?  I read somewhere they don’t because it really wouldn’t change their treatment for hypothyroidism, but….?

I think some doctors don't look too hard for the cause of hypothyroidism because the treatment is the same regardless, and there is no way to stop it.

The blood tests for hashi's that I would sugest are the TSH (should be close to 1), free T4 and free T3, and TPO Ab.  Ultrasounds are also done to look for the typical nodules, and sometimes a biopsy (through a fine needle I think) is done.

 

With a TSH of 1.1-1.6, I doubt you have Hashi's but do those other tests to know for sure - as you said, the TSH is a pituitary test. 

 

Good luck.

 

 

 

 

 

[millerb68]

You could have subclinical hypothyroidism, which sounds fake, but it's not. It's when your thyroid levels show up normal on tests, but you still have all the symptoms. 

 

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I think the diagnosis of Hashimoto's has to do with the antibodies. 

[cyclinglady]

I have Hashi's and sky high antibodies, but I also have an enlarged thyroid and some nodules. Maybe you are entering perimenopause which can start much earlier when you have celiac disease. It would explain sleep issues, fatigue, etc.

Or maybe you just are recovering from celiac disease. It can takes a few years to grow back damaged villi. Longer if you get glutened a lot. I think you just need more time.

[JodyM75]

I had considered perimenopause, but it seems to be another thing that has no clear answer and no clear....well, treatment is the wrong word, but you knwo what I mean.  I did not know it could come earlier for those with celiac.  I'll do a search.  My mother went through menopause around 48, so I'm less than 10 years out from that.  It's very conceivable.

 

I'm just so frustrated and maybe I'm grasping at straws, but as the saying goes I'm sick and tired of being sick and tired.  I don't feel sick, but I'm sure making up for it with the "tired" part! 

 

Thank you for answering my questions and putting in your $.02.  I truly appreciate it.  LOVE the comment about the victory dance!!