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I'm Really Starting Hate The Word Normal :/
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I've been gluten free for about seven months. Towards the end of last year I found out I was hypothyroid and had a nodule. The nodule tested negative. I've been on 75mcg of levo for the past few months. Two of my main complaints that led to going gluten free was fatigue and c. When I first went gluten free within about 6 weeks they seemed to be improving but then slowly returned. When I went on levo I got very fatigued and broke out. The acne got better (always had problems with it). I'm still having trouble with sleep and still have c. I went to a new dr and had her run every test for my thyroid and whatever else she felt necessary. Her suggestion to my c.....eat more vegetables. :/ When did I say I didn't eat them? And she said to take probiotics twice a day. Tmi alert...in regards to my c the "train" seems to be ready but it just won't leave the station if you know what I mean. Lol I've been reading that a lot of people with c and fatigue seem to get a lot of relief from taking t3. I just want some energy :( and to be able to go. Well I got a call from the drs office (which I missed) they left a message saying my results are "normal" and that was it. So now I have to wait till tomorrow to get the actual results. If everything is "normal" what else can be causing this? :( Sorry for the long message. I'm just so tired of feeling this way. I wanna feel awake :(

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There's a certain amount of fatigue that can be attributed to starting gluten-free, however, thyroid plays a huge part in what you are describing, typically.

I would insist on t3/t4 combo. If your current doc won't rx it, find one that will.

What result is normal? Tsh? What about free t3/t4? Get copies of all your labs and be prepared to find a new doctor.

You deserve to at least try combo therapy.

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I'll post the results tomorrow as soon as I get them. When I asked her if she'd prescribe be t3 if I needed it she said yes but then pretty much told me in a nice way that she's not going to risk her job prescribing it to me just cos I want it or think I need it. Or just because of maybe things people say online. They must threaten these drs if they prescribe it cos it seems like they are terrified to rx it. The past few times I've had my thyroid levels checked they just checked to ft4 and TSH. Big surprise huh lol. Last time after being on levo they were ft4 - 1.46 and TSH-1.13. This dr said she would test my t3 and for antibodies. What is a normal t3 level?

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I believe they want both free t3/4 to be midrange? You need the reference range, too.

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And there's so much info out there about different people responding to different thyroid meds - whether it's natural or synthetic or combo...that doc is ridiculously uninformed.

You need to dig up reputable publications and drag them in to her.

Then get a new doc after she grudgingly writes your rx.

This might help. It's an. About.com article that summarizes and compares two studies in support of patients preferring combo therapy. Your doc won't give a flip about the about.com article but the studies may be of interest. http://thyroid.about.com/od/thyroiddrugstreatments/a/t4t3combojcem.htm

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Which brand of thyroid? A board member found gluten in Paddock. The other brands should be OK, though some people don't tolerate the lactose in Synthroid.

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I believe I'm taking the Mylan brand. The past few days I've only been taking my levo every other day cos I thought for sure she would change it and I only had a few pills left. So I went to my new drs office to pick up my results.

TSI- 68

TSH- 2.0

FT4-1.41

FT3- 2.6 (range 2.3-4.2)

Thyroid Perioxidase AB- <10

Thyroglobulin AB <20

Ok so my TSH went up. But hey it's normal to her! I'm so frustrated. I haven't slept in like 21 hours. I don't know if this is partially from not taking my med everyday. Lately I feel like I've been sleeping on empty if that makes sense. I can't get in to see this dr till next week. I want to call my endo but they'll prolly make me come in and it'll prolly be a few weeks from now. And i refuse to pay $30-40 to sit there for 2 hours and have him say everything is normal. I want to call him and demand that he adjust my levo and start me on t3. I'm really getting desperate and ready to just give up. I'm tired of not being listened too. Any advice would be greatly appreciated. Please help :(

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What was the reference range on the TSI?

Mylan is fine. You can't skip pills though. You're even supposed to take your thyroid about the same time every day.

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The range was 140<. I haven't taken my levo for the past few days. I met with a dr that runs a program like the one from the author of Why Do I Still Have Thyorid Symptoms? When My Labs Are Normal. He knows I haven't taken it. He said its not good but I'll be fine. He's having me do a saliva test and plans to put me on Armour. I don't really want to take it but if it'll make me feel better I'll suck it up. I really hope this is going to make me feel better.

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C and insomnia are common reactions to food intolerances also. So, just something to keep in mind as it could be another cause. The tricky part is more than one thing can cause a symptom, and sometimes there are several things that cause a symptom. So eliminating just one cause may not resolve the symptom.

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This new dr is going to have me fast to detox and reset things. Then it looks like I'm starting an elimination type diet. So if there are any other food allergies I guess I'll find out. Really thinking the insomnia (very recent) maybe stress cos after getting the results from the dr and having her pretty much just say normal I had a breakdown. I'm tired of being tired and tired of people thinking I'm doing this diet for the fun of it. What's fun about eating pasta cheese meat and potatoes all your life just to be told you can't eat them or if you do you better understand crazy ingredient lingo. I will keep an eye on reintroducing foods and look for these symptoms. Hope this goes well.

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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