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Newly Diagnosed Hashimoto's Disease
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A little over a year of being gluten free and found out my thyroid has now gone bad (hashimoto's disease). I asked for more than just the TSH they wanted to give me. All tests turned out significantly messed up so probably didn't need all of them but I thought it was interesting that thyroid peroxidase antibody came out really high (493 where normal would be less than 35). Clearly my body has been attacking my thyroid after I pulled out the gluten. My mom told me she thought I should find an endocrinologist to manage the disease with instead of my GP who is clueless and quitting as of this week. I've heard most endocrinologists treat diabetes and don't know much about thyroid. For those of you with thyroid issues, what kind doctor do you see? Also anyone know if the generic levothyroxine at Walgreens is gluten free? I'm trying to call the manufacturer but apparently when I called was past their operating hours so have to wait. So I'm curious to know! Thanks all!!!

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It really doesn't matter if its an endo, GP, or nd as long as s/he treats you to make you feel better rather than to normalize tsh.

Start here for docs in your area. http://www.thyroid-info.com/index.htm

Keep googling and following links and ask around. Start reading about Hashis, and keep copies of all your labs and dosages and meds. Make notes and keep track of how you feel. Talk to your new doctor about all of it. You'll be able to gauge pretty quickly if you're suited to each other.

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Thanks Pricklypear1971. I'm not sure which all of my vague symptoms are related to thyroid. My main complaint was thinning hair and heavy periods. Other things I'm not sure if they are unresolved celiac or something else. After trying the initial dose the GP gave me, when should I go back (GP didn't mention going back).

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Well, at first my doc wanted to see me monthly (with labs each time). I personally thought that was a bit much (I did arrange to get my lab sheets at each visit so labs could be drawn prior to the following visit).

She upped it every month til she started seeing something she liked (not sure what that was). It took at least 6 months for my tsh to move down but I felt much better immediately.

I can tell you right now you need a new doc simply because none of this was discussed, and you're on t4 only. I pushed for combo therapy up front (benefit of mother who is hypo). T4 only can work, but a great number of patients feel better on combo therapy.

You need to start reading about being a thyroid patient.

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Good to know. My GP is clueless about treating anything beyond a cold. I'm trying to get into see someone who I've heard is good but can't get an appointment until March. What medicine are you on Pricklypear1971 that you like?

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I've been on synthetic t3/t4 compounded, Armour (before reformulation), Nature-Throid, compounded natural thyroid, and back to Nature-Throid. I'm trying it again because I felt very good on it but had to switch because of a shortage of product a few years ago (big mess).

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Another idea to find a good doc is to contact your closest compounding pharmacy and ask for a thyroid doc reco. Talk to the pharmacist, unless the person who answers the phone sounds unusually informed.

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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