<<Disclaimer: Verify this information before applying it to your situation.>>

S: Is synthroid GF?
Thank you to all who emailed me.  I received many, many respnses. I will include the interesting parts of many notes.
1. Confirm it with www.glutenfreedrug.com .  Information is compiled by a doctor of pharmacology at a children's hospital in Ohio. Synthroid is listed as okay on this site.  Many people suggested using this site and said they trusted the information.
2. Most drug companies will not guarantee "something" is GF on the very slight off chance that some supplier provides something thats contaminated.  That can happen with any manufactured product.
3. Taken synthyroid for 3 years with no problem.  I have had my TtG tested twice in that time and it was normal.  I am a biopsy confirmed celiac.  I attended U of Maryland celiac symposium with Dr. Fasano a  year ago.  I have to take a drug that is not guaranteed gluten free.  The doctors said the quantity of gluten that could be found in a single pill would not cause a reaction.  I have had no problems.
4. Many people said they have taken synthroid for years with no problem.  Some said they are super sensitive celiacs.
5. A few people said to be careful with generic as may not have same effect.
6. One person said the only thyroid med that this person can tolerate is Levoxyl.  Has tried synthroid and levothyroxine by Mylan and had adverse reaction.  Before going GF was taking 175 mcg and is now down to 100 mcg.
7.  Synthroid is GF but generic may not be.  If they give you a generic call the manufacturer yourself and find out.  In either case always call the maker of the drug.  Do not rely on pharmacists and books that may be outdated.  This person takes synthroid daily and is an RN.
8.This person called Abbot to verify Synthroid's GF status and got the same story.  They can't guarantee that it's GF since they purchase ingredients from different manufacturers.  This person has heard this from many companies in the past year or so.  This persons doc switched her to Levoxyl and she has been taking it without a GF reaction for about a year now.
9.  This person called Abbot labs and verified it was gluten free.  This was a year ago and she has since changed her thyroid medicine so not sure if anything has changed in the last year.
10.  This person is taking generic levothyroxine by Mylan and checked with Mylan.  It is GF.
11.  Diagnosed with celiac in Dec. of 2005.  Researched synthyroid when first diagnosed and found out it is GF. Just had another endoscopy and villi are almost back to normal.  One word of warning.  Make sure you take Calcium, magnesium and vitamins later in the day as they should not be taken in the morning with synthroid.  Doctors say it only affects bone loss if you take too much.  She knows many women in their 40's taking synthroid who have osteoporosis.
12.  Synthroid is listed as GF on www.glutenfreedrugs.com  It does have lactose.  Had a friend who took it for years.  Unfortunately he was extremely lactose intolerant.  A celiac pharmacist said it would be okay to take a lactase tablet when he took synthroid.
13.  This person is celiac and was started on synthroid about a month ago.  It made her very sick.  She is also lactose intolerant.  She switched to levoxyl 25 mcg and had no trouble.  Strongly recommends staying away from synthyroid.
14.  This person found she had a reaction to synthroid and believes it was the lactose.  She is extremely sensitive to any dairy extract (casein allergy), but levoxyl is fine.  She doesn't even notice she has taken it.  No GI symptoms whatsoever.
15.  Synthroid was GF while made by Knoll Labs but they sold it to Abbot Labs.  Abbot does not promise it is GF.  This person takes levothroxine from Mylan.  Mylan uses only potato, corn or rice as inert ingredients in all of their products.
16.  This person has been taking synthroid for years and never had a problem.  She knows the pharmaceutical company doesn't guarantee GF status, but has had multiple "experts" (including people at the CD research center at Columbia U) tell me that it's fine.  She believes them.
17.  Try this link... http://thyroid.about.com/b/a/125712.htm 
18.  Synthroid is listed as GF in the guide found at http://homepage.mac.com/sholland/celiac/GFmedlist.pdf  .  This list was compiled by Dr. Stephen Holland's patients with celiac.  Lack of inclusion in "A Guide through the Medicine Cabinet" does not mean the drug is not GF, just that the compiler didn't have information on the drug.
As to the lactose--lactose is a sugar, casein is a protein.  If the lactose is pure, it should contain no casein, and thus not be of concern as far as your casein allergy is concerned.  if you are lactose intolerant, then take a lactaid tablet with your synthroid, or indeed, get  a different brand of thyroid.  I've been using levothyroid for years. 
19.  This person suspects her levothroxine may have dairy or soy as she has had GI symptoms since starting levothyroxine by Mylan 6 months ago.  She skipped her dose today and GI problems have settled down some the first day.  She plans to call her doc on Monday and try levoxyl and see if that helps

My own research revealed the following information.  I called Abbot to ask if synthroid is GF and ask also if it was casein/lactose free, and soy free (I didn't mention the soy allergy in my original post as I didn't think medications contained soy).  I was told that synthyroid contains lactose and soy and some ingredients are purchased from different manufacturers so can't guarantee that it is GF.  Bingo! I am super sensitive to both casein and soy and still have malabsorption probably due to the combination of recently discovered adrenal insufficiency, pituitary insufficiency (but no tumor as my recent MRI showed and no sign of an adenoma), and Hasimoto's thyroiditis.  So I am lactose intolerant.
I also realized that I was getting headaches frequently again, more stomach aches, more gas, am more fatigued and generally not feeling as well  this last month while on synthroid.  I was blaming most of it on the heat even though I stayed in air conditioning most of the time.  These symptoms are much milder than when I was eating both gluten and soy-dairy was eliminated years before that.
 I called the company that manufactures levoxyl.  It does not have gluten, casein, lactose or soy. The 50 mcg tab also does not have coloring or dyes.  All the other doses have coloring added. The man I spoke to stated that one of the gluten free medication sites says that levoxyl contains gluten, but that was not true.  He didn't mention which site.  I called my doc yesterday and switched to levoxyl 50 mcg.  I did continue to take synthroid thru yesterday.   I started the levoxyl this morning.  I think tonight I am already noticing a difference in how I am feeling,  so will leave for vacation tomorrow. (Stayed home a little longer to straighten all of this out). Lots of reading, relaxing, walking the beaches, and enjoying seafood straight from the sea. I'll be preparing all my own food.
Thank you to all who responded.  Your letters and notes really helped me sort everything out and make a decision on what would work best for me.
Robin 
Massachusetts

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