# Hashis/celiac questions (newbie)



## Sabrina123 (May 9, 2014)

Hello all. I'm newly diagnosed with hashimoto's and was diagnosed with celiac about 2 years ago. My main issues are vitamin absorbtion and extreme fatigue. After being gluten free for 2 years, I do feel better, but I'm still so very tired.

My TSH, T3 and T4 are all within normal levels. My Thyroperox AB is way high and according to my dr., my thyroid feels 'lumpy like hamburger', thus the Hashimoto's diagnosis. My dr. does not want to put my on any thyroid meds as long as my TSH is within normal. This goes against what I've been reading. I will need to go in every few months to have my thyroid function tested and depending on results, my dr will put me on/take me off the meds. Is this standard? I just want to feel better and am tired of feeling like a crazy hypochondriac with mysterious symptoms.

Any thoughts, links, experience appreciated.


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## Andros (Aug 26, 2009)

Welcome to the board!

Would you see if you can get a copy of your most recent labs and post the results with the ranges for us to see?

And have you had an ultra-sound of your thyroid? You really should if you have not! Lumpy like hamburger sounds like an ultra-sound would be essential at this point.


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## Sabrina123 (May 9, 2014)

PTH 44, Range (15-65)

TSH .49, Range (0.4 -3.99) - this was 1.23 in 09/2011. I don't know if it makes a difference that it's moved.

T4 Free 1.1, Range (0.7 - 1.7)

T3 3.0, Range (2.2-5.0)

TPO Ab 220, Range (0 - 60). I know it's not terribly high compared to some of what I've just read here, but is still out of normal, correct??

No, my dr. said nothing about an ultra sound. I've only had the one appointment in March and go back in June. As I've already met my deductible this year, I want to do as much of the testing as possible this year to defray medical costs for next year. I will ask about the ultra sound.

I have been on a vitamin D prescription (100,000 units/week) for 3 years and can't seem to maintain without it. Would this improve with thyroid meds? I'm assuming this is why I'm still so fatigued.


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## jenny v (May 6, 2012)

Definitely push for an ultrasound, "lumpy like hamburger" is a good reason to have one!

Do you know what your current Vitamin D level is? That can definitely cause big fatigue, plus your Free T3 and Free T4 numbers are both a little low, too, which can add to it.


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## bigfoot (May 13, 2011)

Sabrina123 said:


> I will need to go in every few months to have my thyroid function tested and depending on results, my dr will put me on/take me off the meds. Is this standard?


Welcome! 

Short answer: *No.* But of course we are all individual cases. Still, it sounds like a really odd treatment regimen.

Long answer: Is he/she absolutely positive that you have Hashimoto's? I know that Hashi's can cause hyper/hypo swings, but for the doc to keep putting you on and taking you off medication seems like you are chasing your tail. Either they should put you on a dose of thyroid medication strong enough to quiet the antibodies and eliminate the swings as best as possible, or perhaps you are dealing with something else like Graves' that requires a completely different treatment approach.

And that ultrasound should be done ASAP to get a baseline. Lab numbers are not going to tell the whole story, and obviously something is going on, what with your signs, symptoms, and high TPO Ab.


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## Sabrina123 (May 9, 2014)

Here are my vitamin D totals. When the numbers are higher, I was on the Rx. When they bottom out, I was was off the Rx.

08/2009 9

09/2010 18

08/2011 26

02/2012 8

04/2012 16

08/2012 24

11/2012 17 -Went Gluten free (celiac dx) about this time

12/2013 15

03/2014 18


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## bigfoot (May 13, 2011)

A lot of people with thyroid problems have low Vitamin D, as well as other wonky labs such as high triglycerides. So perhaps addressing the thyroid will help a little here. And going GF should help to calm the body's inflammation a little bit.

Is there a reason your doc kept putting you on and off the Vitamin D? A number in the 20's isn't really that good. I think people shoot for Vit. D-25 levels in the upper half of the range.

Honestly, it seems like your body is on a see-saw. Consistency is very important with this stuff. To keep adding and removing drugs like thyroid medication is just confusing the body. Especially if that decision is made solely from lab values on paper and not taking into account how you actually feel on a daily basis.

Someone who is optimized (as opposed to "normal") with their thyroid dose should be feeling pretty good, not utterly exhausted. Of course, there could be other things going on, like low ferritin, viruses or infections in the background (Mono, Lyme, etc.), other AI diseases, and so on. Have they checked for that stuff at all? Done a CBC and CMP? Even so, the elephant in the room sounds like the thyroid.


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## jenny v (May 6, 2012)

Ooof, that Vitamin D looks low! Definitely address that and ditto on the other tests bigfoot mentioned.


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## Sabrina123 (May 9, 2014)

bigfoot said:


> Is there a reason your doc kept putting you on and off the Vitamin D? A number in the 20's isn't really that good. I think people shoot for Vit. D-25 levels in the upper half of the range.


At first, it was my regular doctor who took me off. She was hoping the numbers would continue to climb. Then, after the celiac dx, it was my gastroenterologist who took me off thinking since I was gluten free and was healing, I should begin absorbing on my own. The endocrinolgist put me back on it. I feel a ton better when I'm taking it. I'm on a huge dose of 100,000 units/week. I've never tested in the 'normal' range and have no idea how that would feel.

Edited to add... I had to look up CBC and CMP. No, these tests have not been done. I will note them. Thanks! My zinc is low and I get frequent colds, sinusl infections, etc. Otherwise, I have been screened for other AI, mono and Lymes.


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## bigfoot (May 13, 2011)

Zinc is another hot topic right now. Some feel there is a connection between that and various enzyme pathways. Google "KPU disorder" for more info. They use larger amounts of zinc to treat it. *Disclaimer to anyone else reading this: Get tested for it first and be under the care of a good doctor. Don't just run out and cram a bunch of supplements.*

I can't believe no one has run a CBC and CMP on you yet, along with the other tests. Well, I guess it's possible if they were checking for Lyme and Mono. But that's okay -- you now know some of what to ask for, and be sure to advocate for yourself, too. 

As far as the Vitamin D-25, if you feel better on it, why change it? So much of this stuff is made up of small gains in different areas combined into larger ones. Lots of little puzzle pieces to put together.


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## summeryy08 (Aug 1, 2012)

I also have Hashi's and Celiacs. When I was diagnosed with Celiacs it started to make sense as to why my Vit D levels and other vit levels were low. My Dr. had me take high doses of these vitamins until my levels improved and then put me on a more normal dose to take on a regular basis. Since you've been eating GF, your levels should definitely improve. Definitely get an US of your thyroid to see if there are any abnormalities. There's actually a huge connection between Hashi's and Celiacs... look it up. A lot of people say they feel a huge improvement after starting a GF diet, but it took me awhileeee to feel better and even now, I'm not 100%. The thing that helped me feel so much better was cytomel. I take a pretty small dose but it helped soo much with the fatigue.


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