Glutened by Thyroid Medications? Anyne Else? What brands are everyone taking?

[Tigercat17 18]

Hi All!

I have really been struggling this last year. I have been dealing with acid reflex for almost a year now. I tried the acid reflux meds and I got really sick and they just made it worse. So, I've been on a very low acid diet (GERD Diet) and trying to keep it under control. But I really think I'm getting glutened by my thyroid meds. I don't take any other vitamins or supplements. I have been only juicing fresh fruits and veggies. Has anyone else had problems with these? I've been gluten free for almost 8 years now and was feeling great and then my acid reflux came back about a year ago. I haven't been out to eat in a year so I know it's not that and I have a gluten free kitchen. I double checked everything I eat. I keep a food journal. I know I am very sensitive and I don't eat a lot of gluten free products. I mainly stick with whole foods. Also, back in June I did figure out I was getting glutened by Heniz Sweet Relish. All the sudden it wasn't gluten free anymore so I did stop that, but that was months ago and I'm still not 100%.  And so then I called everything that I have been taking just to be sure it's still gluten free because products change.

So, has anyone else had problems with their thyroid meds? And what brands are everyone taking? I think I'm going to have to change my meds just to see if I feel better. I called my doctor today but they haven't called back yet. So, I'm doing some research before I change... I year ago I was taking Levothyroxine (Lannett Brand) and I started to have acid reflux about a year after taking it. So then I switched to Levothyroxine (Mylan Brand). I didn't get better after a month of taking it so I called my doctor and they changed me to Levoxyl. I've been taking that for about the last 6 months.. My throat is better than it was but it's still not gone and I am so careful with my diet. I don't even eat salad dressing anymore.  So I'm thinking I might be getting some CC from the Levoxyl. It has to be that, because I'm so strict it's crazy and driving me a little nuts. I used to be able to eat out once a month and I haven't been able to do that. I'm really getting down and so frustrated with this disease.  

Also, I have been asking my pharmacist to clean the trays for me when they count my meds since I'm very sensitive.  I even got new pots and pans just to make sure I wasn't getting cc from my old pans. I've been trying anything I can think of.

Can anyone share what brands they are taking so at least I have a starting point? This is such a battle.. I would really appreciate it. Thank you!

[kareng 2,317]

Very few meds actually contain gluten. 

Its possible the acid reflux has nothing to do with gluten.  Many people, who do not have Celiac, have reflux.

[Tigercat17 18]

I'm having other symptoms too. Bloated, my stomach hurts, not sleeping well, tried all the time.. I feel like I have trouble concentrating.  And I get cold sores after I get glutened... night sweats when I get a lot of it. Since I've been celiac for almost 8 years I know my glutney symptoms well.  

[sdlane 2]

Hi Tiger,  

Yes, your thyroid meds may contain gluten in the filler, not the actual medicinal component itself.  Pre-Celiac diagnosis, I took Synthroid 225mg and Cytomel 25mg.  The Synthroid brand name does contain gluten in the filler, whereas the Cytomel does not.  The filler is the actual white (or colored) substance that you would call the "pill" itself.  It is combined with the medicine to form the actual pill.  With my new Celiac diagnosis, the first thing I did was have my pharmacist check the ingredients for all my meds.  Only the Synthroid had gluten in the filler.  So, my doctor switched me to Tirosint (which is a non-guten gel cap and the meds are in water) http://www.tirosint.com.  The Cytomel is fine.  Since it sounds like you are taking a generic, ask your pharmacist to check the ingredient list from the manufacturer.  I have Graves and Celiac now...like I really need two autoimmune diseases.  lol  I had my thyroid (7 1/2 inches long!!), a parathyroid and three lymph nodes removed 5 years ago.  After leaving my small town doctor for a real Endo at UC San Francisco, I'm back to feeling a lot more like myself.  Well, as far as not having a thyroid is concerned. lol  On a side note, depending on how sensitive you are, there can be gluten in your toothpaste, sun screen, shampoo, conditioner, deodorant, etc, so make sure you research that stuff too.  Crazy, huh?  Best wishes to you in staying healthy!   Stacy

[sdlane 2]

Me again...a lot of doctors don't know much about, or like, Cytomel.  Make sure your doctor adjusts your thyroid meds based on your symptoms, not just your labs being "in range."  Range means nothing when you feel like crap.  I keep my T4 high and my T3 in the middle...that's when I feel the best and not all lethargic, with symptoms as you were describing above, save for the acid reflux.  I assume you still have a thyroid, which may make finding your perfect range a little more challenging.  Do you have autoimmune thyroid disease?  The best advice I can give you in that regard is don't settle for a doctor not listening to you.  And go to an Endocrinologist, not a GP who "thinks" they know everything about thyroid function.  There is a reason you have an extra four years of medical study to specialize in dealing with them!  lol

Edited March 3, 2016 by sdlane

[cyclinglady 1,597]

I take Armour Thyroid and it is gluten free.

 I can relate to your frustration.  I got glutened badly last summer.  Was it just a one time exposure that triggered my antibodies to go higher than when I was initially diagnosed (tested six weeks after gluten exposure)?  I have no clue as to what glutened me because it happened before I went on vacation and I am careful not to eat out before a trip.  I am guessing a prescription drug or a product that was labeled gluten free.  I have yet to test either one.  I am too afraid to get ill again as it took me 3 months to completely recover (became lactose intolerant again and developed a nice case of hives and rashes controlled by antihistamines).  My prescription drug was generic, so it is not on the gluten-free list.  I can live without it, but not my thyroid replacement, which is gluten-free as I stated earlier.  

This might help, but you probably have already checked these lists:

https://celiac.org/live-gluten-free/glutenfreediet/gluten-medication/

http://www.celiaccommunity.org/gluten-free-drug-list/

 

[StephanieL 74]

Mylan is gluten-free, Lannett is also on the list of gluten-free levo.

[Tigercat17 18]

1 hour ago, sdlane said:

Me again...a lot of doctors don't know much about, or like, Cytomel.  Make sure your doctor adjusts your thyroid meds based on your symptoms, not just your labs being "in range."  Range means nothing when you feel like crap.  I keep my T4 high and my T3 in the middle...that's when I feel the best and not all lethargic, with symptoms as you were describing above, save for the acid reflux.  I assume you still have a thyroid, which may make finding your perfect range a little more challenging.  Do you have autoimmune thyroid disease?  The best advice I can give you in that regard is don't settle for a doctor not listening to you.  And go to an Endocrinologist, not a GP who "thinks" they know everything about thyroid function.  There is a reason you have an extra four years of medical study to specialize in dealing with them!  lol

Thanks sdlane! Lots of good information. I don't have a thyroid at all. I had thyroid cancer over 8 years ago, so I'm really dependent on these drugs. I'll talk to my doctor tomorrow and see what they want to do. I know I'm getting some CC and I have taken out so many things from my diet to test and see if I feel better, but I feel like crap and I know this is not normal. I was feeling amazing a year ago. It's so frustrating.. This is the only item in my diet that I can't stop taking to see if I'll feel better like food products. I'm really hoping that feel better soon. My hair and nails are a lot thinner than usual, too. So I'm thinking I should probably get my T3 and T4 levels checked too. Thank you so much!

[kareng 2,317]

Interesting article about gluten in meds and how to see if it's in your med

https://celiac.org/live-gluten-free/glutenfreediet/gluten-medication/

"A recent search of medications listed on a National Library of Medicine database, managed in conjunction with the National Institute of Health, showed that there were 8,379 individual products or dosage forms that contained the word “starch.” Searching specifically for the word corn reveals 6,518 records, potato reveals 2,934 records, tapioca reveals 17 records while the word wheat reveals 11 records. The total adds up to more than the 8,379 records because many products have more than one starch contained within the product. This database is called Pillbox, and can be accessed here."
 

Oop!  Looks like Cycles already posted this!

Edited March 3, 2016 by kareng

[icelandgirl 107]

Hi Tigercat,

I'm sorry to hear that you're not feeling well... ((((hugs)))).

Have you had your antibodies checked to see if you're getting glutened?  That may be the place to start.  I do take Levoxyl without issues.  My antibodies came back great last summer.  When I was on generics I had some issues, but going to the name brand stabilized my thyroid. 

I hope that you get some answers and feel better soon!

[mbr22m 4]

Have you heard of Tirosint? I was at a celiac convention awhile back and they were handing out info on it. I took it for my mom who has hypothyroidism.  http://www.tirosint.com/patient-information/what-makes-tirosint-different

[mbr22m 4]

Sorry!! Just read sdlane's response! I'm on my mobile and can't read that well on it!

[manasota 52]

Tigercat17,

I recently spoke with Pfizer about their Levoxyl, because I used to take it and loved it.  However, when I took it, Levoxyl was made in a small gluten free facility in st. Pete, FL. with no possibility of cross-contamination.  Last week, Pfizer told me that Levoxyl now is made in a facility where "some" of their meds do contain wheat. (Levoxyl does NOT.)  But they do use shared lines!

I recently was forced by my insurance company to try Mylan's levothyroxine, which is made in a gluten free facility.  I don't think it's agreeing with me (for whatever reason).  I'm hoping to switch back to Tirosint (only 4 ingredients) which is made in a gluten free facility.

I am especially concerned about Pfizer meds, as they would not tell me which ones had wheat in them.  They want you to call with gluten questions about each med you are taking.  I had been hoping to post the names of the wheat-containing meds.  No such "luck".  I'm pretty mad at Pfizer (a HUGE pharmaceutical company).  Mylan, on the other hand, was very helpful and cooperative.  No gluten in their facility, that they know of at least. Obviously, no drug company at this point in times tests for gluten--as far as I know!  If I'm wrong, PLEASE correct me.  And please God, help Congress pass the NO GLUTEN in MEDS ACT.

[Tigercat17 18]

44 minutes ago, manasota said:

Tigercat17,

I recently spoke with Pfizer about their Levoxyl, because I used to take it and loved it.  However, when I took it, Levoxyl was made in a small gluten free facility in st. Pete, FL. with no possibility of cross-contamination.  Last week, Pfizer told me that Levoxyl now is made in a facility where "some" of their meds do contain wheat. (Levoxyl does NOT.)  But they do use shared lines!

I recently was forced by my insurance company to try Mylan's levothyroxine, which is made in a gluten free facility.  I don't think it's agreeing with me (for whatever reason).  I'm hoping to switch back to Tirosint (only 4 ingredients) which is made in a gluten free facility.

I am especially concerned about Pfizer meds, as they would not tell me which ones had wheat in them.  They want you to call with gluten questions about each med you are taking.  I had been hoping to post the names of the wheat-containing meds.  No such "luck".  I'm pretty mad at Pfizer (a HUGE pharmaceutical company).  Mylan, on the other hand, was very helpful and cooperative.  No gluten in their facility, that they know of at least. Obviously, no drug company at this point in times tests for gluten--as far as I know!  If I'm wrong, PLEASE correct me.  And please God, help Congress pass the NO GLUTEN in MEDS ACT.

Thank you Manasota! That is so helpful! I haven't called them since Sept. and I didn't think to ask them about shared lines...  but wow! That would explain a lot! I can't tolerate anything made on shared lines. I am that sensitive. I did talk to my doctor today and they are so nice and helpful.. They're going to put me back on the Levothyroxine (Lannett brand) since I was talking it before I started having celiac symptoms. I was taking it for two years without problems. I'll start it tomorrow. And they said if I'm still having problems they'll switch me to Tirosint. I did call them today and it sounds like it would be perfect for me. We'll see how I feel with the Lannett first since my doctor already called it in. All of Lannett's medications are gluten free so I thought it would good to give it another chance again.

And yes, I totally agree about Pfizer. This isn't the first time I took medication from them and felt like I got glutened. But it was only sometime I needed for a week so I recovered, but this thyroid med is something we all have to take daily and if there's just a little CC it will really mess up your system.

Thanks again!

[Tigercat17 18]

1 hour ago, icelandgirl said:

Hi Tigercat,

I'm sorry to hear that you're not feeling well... ((((hugs)))).

Have you had your antibodies checked to see if you're getting glutened?  That may be the place to start.  I do take Levoxyl without issues.  My antibodies came back great last summer.  When I was on generics I had some issues, but going to the name brand stabilized my thyroid. 

I hope that you get some answers and feel better soon!

HI Icelandgirl! awww... thanks for the hugs.. I have gotten my antibodies checked 8 months but not lately. And they were 11... But I was feeling horrible at that time. I think if I'm only getting CC my antibodies don't show anything since I've been gluten free for 8 years.

Thank you! I'll have to get them rechecked this week. But I am changing my thyroid medicine back to Lannett brand. I wonder if the Levoxyl is made in different facilities. Maybe some plants have more of a chance in CC than others? I know you are super sensitive too, so I'm just wondering, but we'll soon see how I do on the different brand. But this has been going on for too long. I'll keep you posted.

[icelandgirl 107]

You are most welcome for the hug...I could use one too most of the time. 

It stinks to not feel well and be trying to figure out what's going on.  Please let me know how you do on the med change.  Also if you try tirosint.   I'm interested in that as it has so few ingredients!  Remember to get all of your levels checked 6-8 weeks after.  The effectiveness of thyroid medications varies.  Make sure to get your levels to a good spot and see how the rest of you feels.

Good luck! 

[cyclinglady 1,597]

7 hours ago, manasota said:

Tigercat17,

I recently spoke with Pfizer about their Levoxyl, because I used to take it and loved it.  However, when I took it, Levoxyl was made in a small gluten free facility in st. Pete, FL. with no possibility of cross-contamination.  Last week, Pfizer told me that Levoxyl now is made in a facility where "some" of their meds do contain wheat. (Levoxyl does NOT.)  But they do use shared lines!

I recently was forced by my insurance company to try Mylan's levothyroxine, which is made in a gluten free facility.  I don't think it's agreeing with me (for whatever reason).  I'm hoping to switch back to Tirosint (only 4 ingredients) which is made in a gluten free facility.

I am especially concerned about Pfizer meds, as they would not tell me which ones had wheat in them.  They want you to call with gluten questions about each med you are taking.  I had been hoping to post the names of the wheat-containing meds.  No such "luck".  I'm pretty mad at Pfizer (a HUGE pharmaceutical company).  Mylan, on the other hand, was very helpful and cooperative.  No gluten in their facility, that they know of at least. Obviously, no drug company at this point in times tests for gluten--as far as I know!  If I'm wrong, PLEASE correct me.  And please God, help Congress pass the NO GLUTEN in MEDS ACT.

Alas, this bill has not passed yet!   From what I have read....fat chance!  ?

https://www.govtrack.us/congress/bills/114/hr3648

For years I paid cash for Armour Thyroid.  I would get a 3 month supply.  It is/was less than $10 a month which was the cost of my monthly co-pay.  

[StephanieL 74]

This is one of those times you have to look at the odds- 

1) MOST meds are not filled with gluten

2) IF a company makes something with gluten, there may be different lines.

3) If not, they typically are going to have to scrub lines BETWEEN batches of drugs. You can not run the risk of giving someone a medication they may be allergic to or that will adversely harm them.

I am not saying there is not a remote possibility of x-con but truthfully I would look at other sources before I would dump a whole class of drugs as all being contaminated and not useable!

[flutegal64 5]

Drugs can be frustrating!  Your pharmacist should be able to call the manufacture.  However, recently I've noticed the drug companies are being very mysterious in their responses.  At best they will say there are no gluten containing ingredients.
I've gotten sick on more and more medications recently even when they say they don't contain gluten (but I get a gluten reaction).
It's hard too because if it's an off time (in the evening or on a weekend) sometimes you have to wait for a response.
This is an issue I wish the government would address- drug companies should be required to label their drugs if they contain gluten.
 

[suelynn 0]

I too am struggling with something. I have had thyroid disease now for may years between graves and hashimotos..have had chronic cough off and on for 10 years. I am gluten free and try to eat whole foods, but slip in pepsi and some sugar.i feel like its tied to thyroid, but drs don't want to hear that. light bulb went off recently and I think its acid reflux back into my throat hence the cough. trying to eliminate foods as I feel that acid reflux is from a food and not just something we get and live with and take meds for it. anyone else have cough..I mean a cough that is sleep/social/work disruptive at times. And people look at you like you have the plague

[HealthDetective 0]

59 minutes ago, suelynn said:

I too am struggling with something. I have had thyroid disease now for may years between graves and hashimotos..have had chronic cough off and on for 10 years. I am gluten free and try to eat whole foods, but slip in pepsi and some sugar.i feel like its tied to thyroid, but drs don't want to hear that. light bulb went off recently and I think its acid reflux back into my throat hence the cough. trying to eliminate foods as I feel that acid reflux is from a food and not just something we get and live with and take meds for it. anyone else have cough..I mean a cough that is sleep/social/work disruptive at times. And people look at you like you have the plague

Hi there, my mom had the same issue almost exactly. Have you ever had food allergy testing done? My mom had the exact same issue. Cronic cough. Almost debilitating. Was sent for all kinds of X-rays, put on all kinds of antibiotics, basically the docs told her nothing wrong. She was becoming depressed. Couldn't hold a conversation... Phone call, always a crazy coughing fit. Turned out a naturopath finally helped her and it was a dairy allergy. Stopped eating dairy and problem solved. I hope this can help you. Take care 

[StephanieL 74]

14 hours ago, HealthDetective said:

 Turned out a naturopath finally helped her and it was a dairy allergy. Stopped eating dairy and problem solved. I hope this can help you. Take care 

Naturopaths do not do any allergy testing that is documented as being useful in any way. If it was an allergy, a board certified allergist would be the person to see who would do IgE testing for an allergy. 

[Nikki2777 28]

I take Mylan Levothyroxine with no issues.

I'm no expert and certainly not as knowledgeable as others that have responded, but if you are juicing, couldn't the high acidity of the fruits and some of the vegetables be causing some problems?  I love fruit, but I have to watch out and limit my intake because too much just upsets my stomach. 

[cyclinglady 1,597]

26 minutes ago, Nikki2777 said:

I take Mylan Levothyroxine with no issues.

I'm no expert and certainly not as knowledgeable as others that have responded, but if you are juicing, couldn't the high acidity of the fruits and some of the vegetables be causing some problems?  I love fruit, but I have to watch out and limit my intake because too much just upsets my stomach. 

I agree about the juice!  I think eating veggies and fruit in the whole form is best!  Seriously, how many oranges can you eat  in one sitting before your body tells you enough?  Does not happen as fast with Juice.  My family rarely has juice.  I mean rarely.........

[suelynn 0]

On ‎3‎/‎1‎/‎2016 at 5:14 PM, kareng said:

Very few meds actually contain gluten. 

Its possible the acid reflux has nothing to do with gluten.  Many people, who do not have Celiac, have reflux.

I have struggled with acid reflux..the silent type that causes a chronic and annoying cough. I have gone through allergy testing, my great functional Doc was stumped..thought allergies..I am almost 100 % sure its caused from my thyroid. I had graves for 7 years, then found this great  dr, am now being treated for hashimotos, but it flip flops back and forth, so right now too much cytomel and it cause this cough, and I feel like its backing up into my throat. So I taper off my meds a bit to slow down the digestion  and all the stuff that being hyperthyroid can cause. I am also gluten free, and have eaten better now than I have the past 10 years. Mostly whole foods, with a few cheats of sugar here and there.It is such a constant struggle just trying to eat gluten free and then throw the thyroid thing in.