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Newly Diagnosed Hashimoto's Disease


Newbee

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Newbee Contributor

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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pricklypear1971 Community Regular

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. Open Original Shared Link

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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Newbee Contributor

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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pricklypear1971 Community Regular

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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Newbee Contributor

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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pricklypear1971 Community Regular

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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pricklypear1971 Community Regular

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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Newbee Contributor

Great idea! Thanks.

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    • Anmol
      Thanks this is helpful. Couple of follow -ups- that critical point till it stays silent is age dependent or dependent on continuing to eat gluten. In other words if she is on gluten-free diet can she stay on silent celiac disease forever?    what are the most cost effective yet efficient test to track the inflammation/antibodies and see if gluten-free is working . 
    • trents
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    • knitty kitty
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    • trents
      Welcome to the forum community, @ekelsay! Yes, your tTG-IGA score is strongly positive for celiac disease. There are other antibody tests that can be run when diagnosing celiac disease but the tTG-IGA is the most popular with physicians because it combines good sensitivity with good specificity, and it is a relatively inexpensive test to perform. The onset of celiac disease can happen at any stage of life and the size of the score is not necessarily an indicator of the progress of the disease. It is likely that you you experienced onset well before you became aware of symptoms. It often takes 10 years or more to get a diagnosis of celiac disease after the first appearance of symptoms. In my case, the first indicator was mildly elevated liver enzymes that resulted in a rejection of my blood donation by the Red Cross at age 37. There was no GI discomfort at that point, at least none that I noticed. Over time, other lab values began to get out of norm, including decreased iron levels. My PCP was at a complete loss to explain any of this. I finally scheduled an appointment with a GI doc because the liver enzymes concerned me and he tested me right away for celiac disease. I was positive and within three months of gluten free eating my liver enzymes were back to normal. That took 13 years since the rejection of my blood donation by the Red Cross. And my story is typical. Toward the end of that period I had developed some occasional diarrhea and oily stool but no major GI distress. Many celiacs do not have classic GI symptoms and are "silent" celiacs. There are around 200 symptoms that have been associated with celiac disease and many or most of them do not involve conscious GI distress. Via an autoimmune process, gluten ingestion triggers inflammation in the villous lining of the small bowel which damages it over time and inhibits the ability of this organ to absorb the vitamins and minerals in the food we ingest. So, that explains why those with celiac disease often suffer iron deficiency anemia, osteoporosis and a host of other vitamin and mineral deficiency related medical issues. The villous lining of the small bowel is where essentially all of our nutrition is absorbed. So, yes, anemia is one of the classic symptoms of celiac disease. One very important thing you need to be aware of is that your PCP may refer you to a GI doc for an endoscopy/biopsy of the small bowel lining to confirm the results of the blood antibody testing. So, you must not begin gluten free eating until that is done or at least you know they are going to diagnose you with celiac disease without it. If you start gluten free eating now there will be healing in the villous lining that will begin to take place which may compromise the results of the biopsy.
    • Anmol
      Hello all- my wife was recently diagnosed with Celiac below are her blood results. We are still absorbing this.  I wanted to seek clarity on few things:  1. Her symptoms aren't extreme. She was asked to go on gluten free diet a couple years ago but she did not completely cut off gluten. Partly because she wasn't seeing extreme symptoms. Only bloating and mild diarrhea after a meal full of gluten.  Does this mean that she is asymptomatic but enormous harm is done with every gram of gluten.? in other words is amount gluten directly correlated with harm on the intestines? or few mg of gluten can be really harmful to the villi  2. Why is she asymptomatic?  3. Is Gliadin X safe to take and effective for Cross -contamination or while going out to eat?  4. Since she is asymptomatic, can we sometimes indulge in a gluten diet? ----------------------------------------------------------------------------------------------- Deamidated Gliadin, IgG - 64 (0-19) units tTG IgA -  >100 (0-3) U/ml tTG IgG - 4   (0-5) Why is this in normal range? Endomysial Antibody - Positive  Immunoglobulin A - 352 (87-352) ------------------------------------------------------------------------------------------------ Thanks for help in advance, really appreciate! 
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