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Who Is Currently Taking Synthroid?


BrittLoves2Run

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BrittLoves2Run Apprentice

My Endocrinologist does not want me on generic, and recently put me on Synthroid. I was concerned about the CC issues that Synthroid says can be possible, and tried to get Tirosint. Only problem is that it's $75 a month WITH insurance.

 

I started taking Synthroid about 2 weeks ago. Very shortly after I started getting all these strange things happening. Weird gut spasms, pain in my kidneys, pain right below my rib cage, pain in my ovaries, really bad intestinal cramping, and nausea. I did test positive for Leukocytes in my urine and told I have a UTI. I've been on antibiotics for nearly 72 hours and I'm not feeling any better. Still nauseous, and getting back/side/kidney/ovary pain.  

 

It could be a complete coincidence that this all happened RIGHT when I started the synthroid, but wondering if some of this could be glutening?

 

Anyone who is taking the BRAND NAME drug feeling OKAY?


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etbtbfs Rookie

When I investigated the gluten status of various T4 brands years ago, I discovered that Abbott would not promise thAt Synthroid is gluten-free. However King Pharmaceutical (now owned by another corporation) would guarantee that Levoxyl is gluten-free. So I have used Levoxyl ever since.

Nikki2777 Community Regular

I take Levothyroxine from Mylan with no problem.  Is that generic?

LauraTX Rising Star

I also take Mylan levothyroxine, which is a generic.  A lot of doctors will have patients take brand name to prevent them from moving from one generic to another.  With levothyroxine, the doses are so tiny, that a slight difference between brands can cause blood levels to fluctuate.  So when you take one generic brand, stick with it.  If you change brands, go get your thyroid levels checked 6 weeks later.

 

As for the doctor insisting you take brand name synthroid despite it not being verifiably gluten-free.. just firmly tell him that you cannot take that medicine as it may contain gluten, and have him write you a script that allows generic substitution.  Then find one manufacturer and stick with it.

rrmac Apprentice

I take levothyroxine from Lynette they say it's gluten-free. I'm 1 year gluten-free and my antibodies are down by half on some and normal on other tests. I'll be checking them again in the future if they don't completely go away I'll look into another thyroid medicine.

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    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
    • JoJo0611
      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
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