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Old 05-29-2013, 05:20 PM   #2356
traceypi
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Hi Everyone,

I've been on Levoxyl for the past 12+ years and much to my surprise when I went to refill my prescription the other day I was told Levoxyl had pulled off the shelves. Seems it won't be coming back to 2014/15. What's amazing is my endocrinologist nor my GP have bothered to contact me to let me know about this. Apparently doctors were notified back in February about this potential shortage.

Now I'm faced with the issue of go generic or switch to Synthroid. I have no idea what to do. I had radioactive iodine back in the early 90's and was on Thyroxine in the UK before Levoxyl (150mcg). I've never had any issues, thank God. Now I'm worried. Anyone else in the same boat?
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Old 05-29-2013, 05:29 PM   #2357
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Yes, I am in the same boat! Just found out last week.

So what is happening is that whatever container the drug company is now using for the large quantities of Levoxyl, well, it smells. There is an odor when opening the bottle. It's not from the medication. So they have recalled all of it and I guess they have to work on getting new containers and getting the production back up. Hard to believe it will take until next year.

The bad part for me is that the reason I take Levoxyl is because I am allergic to a very common filler: povidone. Levoxyl is one of the few thyroid medications that does not have it. The pharmacy attempted to give me Synthroid over the weekend but I had to explain the povidone issue. They researched it for me and we determined that the new medication, Tirosint, does not have it. So they go my doctor to change over to that. I just hope I don't have any adjustment issues to the new brand. Geez...

Quote:
Originally Posted by traceypi View Post
Hi Everyone,

I've been on Levoxyl for the past 12+ years and much to my surprise when I went to refill my prescription the other day I was told Levoxyl had pulled off the shelves. Seems it won't be coming back to 2014/15. What's amazing is my endocrinologist nor my GP have bothered to contact me to let me know about this. Apparently doctors were notified back in February about this potential shortage.

Now I'm faced with the issue of go generic or switch to Synthroid. I have no idea what to do. I had radioactive iodine back in the early 90's and was on Thyroxine in the UK before Levoxyl (150mcg). I've never had any issues, thank God. Now I'm worried. Anyone else in the same boat?
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Old 05-29-2013, 05:36 PM   #2358
Christine
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Well, here's the deal:

Any kind of "food", even just milk, will interfere with your thyroid absorption. This is why they tell you to take it on an empty stomach away from anything. This will give you maximum absorption at the lowest dose possible. As you are finding out, this doesn't always work for everyone depending on your schedule. So it could be that you have to take your medication closer to food intake. If this is the case, then, for example, 125 mg of thyroid medication may not get you to your TSH well and you might have to always be on a dose of 137 mg. The deal is to get into a routine and stick with it and keep adjusting your medication dosage until you hit the sweet spot with your TSH. My doctor told me this long ago. For some people, it's just impossible to go two hours.

I am "lucky" in that I get up at 4AM everyday and I don't eat until much later at work. I take my medication at around 4:20 and then I don't have my first cup of tea until 6:30 when I arrive at work and get settled. I eat at 7:30. You can bet, though, if my job required me to eat earlier, I would do it. I'd take the medication and eat when I could. If it meant I had to get a higher dose of thyroid meds, so be it.


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Originally Posted by Piper View Post
This may have been asked before. I searched and didn't find it.

I take Levothyroxine sodium 50mcg and the pharmacist said I had to take it first thing in the morning and wait at least an hour before I ate or drank anything and 2 hours before dairy. This means no coffee for 2 hours after I wake up (I drink milk in it.) It is a PITA. Although I drink decaf, I still want something to drink other than water! And I have to wait at least an hour before I can eat breakfast--2 if I'm having anything with butter or cream cheese.

Has anyone else been told this? If so, how do you handle it?
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Old 05-29-2013, 05:57 PM   #2359
traceypi
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Christine,

Thanks for the reply. I'm fortunate not to have any allergies but I also have heard the generics are iffy in terms of dosage accuracy as well as fillers of unknown variety.

Also, in addition to food, one thing I found that also affected my absorption was my IUD. Its a Mirena that lasts 5 years and as the potency goes down from about year 4 or 5 so does my dosage of Levoxyl, from 150mcg to 125mcg.
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Old 05-30-2013, 09:05 AM   #2360
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I hear you about the allergy thing. For over 4 years I have been struggling with this thyroid thing. About 3 months after being diagnosed, I started having tremendous stomach pain, shortness of breath and a multitude of other things. I had every test known to mankind ran on me and most things appeared normal. I kept trying to tell the Doctors that I felt it was associated with my thyroid somehow as it only started after I began medication and if I take my medicine for about 3 days in row I start getting the excruciating pain.

Fast forward 4 yrs and me sporadically taking my thryroid medicine (on a few days off a couple of weeks and so on and so on) and I got a new Endo. I was telling her what was going on and she immediately said I was probably allergic to the filler in the medicine (of which I had tried Levothyroxine, Levoxyl, Armour, Synthroid etc) and that she wanted me to try a Hypoallergenic Medicine for a couple of months.

So she prescribed me Tirosent and I started taking it. Well what do you know? I have now been on this medicine for 2 months straight and have not had an episode with my stomach. Not even once. It absolutely blows my mind that all this pain I have been going through was something as simple as an allergy! Thank goodness she listened and did not give me the standard "People have been taking thyroid medicine for a hundred years and it is absolutely safe, blah blah blah" line. Yes the medicine is safe, but apparently the fillers were not. Now I need to work on getting to the right dosage.

One thing I noticed in the beginning was I had a little bit of insomnia. I started to take my medicine right before bed and have not had that problem anymore. I am not sure what the difference is of taking it in the morning or evening (since it is not an instant thing and takes a while to store up in your body) but it did solve the whole "do not eat within an hr" problem for me. I simply take it and then get in bed.

I have been researching different Thyroid meds that are hypoallergenic and apparently there is one that also contains T3 called Nature-Throid. Does anyone have any experience with it? My dr does not like the dessicated meds, but I did really well energy wise when I was on Armour (just could not take it consistently) and would love to try it out.
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Old 05-30-2013, 09:15 AM   #2361
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Thank you for your replies to when you take your thyroid. I did some research and found this study. I think I am going to try taking it right before I go to bed.

http://thyroid.about.com/od/thyroidd.../a/bedtime.htm
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Old 05-30-2013, 02:44 PM   #2362
Christine
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Quote:
Originally Posted by traceypi View Post
Christine,

Thanks for the reply. I'm fortunate not to have any allergies but I also have heard the generics are iffy in terms of dosage accuracy as well as fillers of unknown variety.

Also, in addition to food, one thing I found that also affected my absorption was my IUD. Its a Mirena that lasts 5 years and as the potency goes down from about year 4 or 5 so does my dosage of Levoxyl, from 150mcg to 125mcg.
The problem with generics is that the pharmacy can change the supplier from month to month so you are getting a different "brand" every time. My local CVS states that they only use the generic from Mylan pharmaceuticals and they feel it is good. It still has that "bad" filler though so I can't use it.

As for the birth control, many years ago I tried taking oral contraceptives and my TSH went to something like 8.0 no matter what I tried. Finallly had to stop using them. The doctors were baffled.
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Old 05-31-2013, 03:57 PM   #2363
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Hi everyone, I will catch up when I get back. Just popping in from the Beach Club. tomm. we are changing to the yacht club.

Loriann - glad your biopsy is over sorry for the issues you had.

The weather has been so so. We always are inside when it rains so far.

Ate at chefs, citricos for our anniv. and hollywood brown derby so far, tonight cape may. Its really crowded. Wishes was a zoo the other night and we are going to brave the star wars parade on sunday and then leave there.

Storm a long bay is the best! So is the wonderful beach club concierge floor, especially since we arent even paying for it!! Guess all dh trips and ff miles are good for something after all
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Old 06-01-2013, 04:22 PM   #2364
Christine
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Three month supply of Levoxyl = $20

Three month supply of Tirosint = $70

Yikes!
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Old 06-01-2013, 08:41 PM   #2365
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Hey everyone! I was diagnosed with Hashimoto's about 3 years ago. I've been on Levoxyl, levothryoxin, then Synthroid. I've had 2 different endo's. I stopped going to the first one when she kept saying my numbers are fine, maybe I'm depressed when I said I was still tired. Then she suggested I do a sleep study. Yeah ok. My new endo is pretty good but darn it he's retiring! Plus, he still doesn't really listen to me when I say I'm tired!!!!! I just want to not be tired darn it!

So I started researching and am trying out desiccated bovine thryoid. We'll see if it helps! Along with coconut oil, selenium, vitamin D and my regular multivitamin!

Anyway just wanted to introduce myself, glad to know that there are many others of us around, not in a good way but at least we're not alone!
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Old 06-02-2013, 02:35 PM   #2366
Christine
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Welcome Enchanted Minnie! Let us know how that dessicated thyroid medication works for you.

You'll probably see that the most "vocal" of us on this thread are thyroid cancer survivors; however, a few people pop in with just regular thyroid issues so hopefully you'll find someone to compare notes with.
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Old 06-02-2013, 08:56 PM   #2367
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I'm trying not to freak out here lol but today I went in to pick up my Levoxyl prescription refill and the pharmacist told me that it's all been recalled! They claim they don't have any and won't till maybe sometime in mid 2014. I have one, ONE pill left. I told the pharmacist that and she shrugged and said talk to your dr. Nice. She was ridiculously unhelpful and I asked her what am I supposed to do? Talk to your dr. Basically, it wasn't her problem even though I've been getting my prescription there for over 6 years.

I'm beyond irritated. How can there be no more left and yet nobody thought to contact me, the patient?? Apparently my only option is to switch to another medicine for my thyroid. I cannot tolerate the Armour so I guess that leaves me with Synthroid. Does anyone know if it's gluten free? Is it a difficult transition, going from Levoxyl to Synthroid?
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Old 06-03-2013, 09:09 AM   #2368
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Quote:
Originally Posted by 3prettyprincesses View Post
I'm trying not to freak out here lol but today I went in to pick up my Levoxyl prescription refill and the pharmacist told me that it's all been recalled! They claim they don't have any and won't till maybe sometime in mid 2014. I have one, ONE pill left. I told the pharmacist that and she shrugged and said talk to your dr. Nice. She was ridiculously unhelpful and I asked her what am I supposed to do? Talk to your dr. Basically, it wasn't her problem even though I've been getting my prescription there for over 6 years.

I'm beyond irritated. How can there be no more left and yet nobody thought to contact me, the patient?? Apparently my only option is to switch to another medicine for my thyroid. I cannot tolerate the Armour so I guess that leaves me with Synthroid. Does anyone know if it's gluten free? Is it a difficult transition, going from Levoxyl to Synthroid?
3prettyprincesses: if you read above, you will see that a few of us have run into this.

My pharmacy did not tell me either and when I went to pick up the medication, she pulled it out and showed me it was Synthroid. I have an allergy to the povidone filler in Synthroid and I told her I could not use it. She volunteered to call my doctor to find a suitable replacement. She worked with me right there to find one. For me it is Tirosint. It is much more expensive but I'm going to have to live with it until Levoxyl comes back into production.

The medication itself is fine; however, apparently the containers used to ship the Levoxyl were giving off a foul odor and making the meds smell. They pulled it all and, why it takes a year to get more out there is unknown to me.

I do agree that they could have notified Levoyxl customers in some way. It's not as if they don't have all of our information.
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Old 06-05-2013, 08:31 AM   #2369
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Quote:
Originally Posted by Christine View Post
3prettyprincesses: if you read above, you will see that a few of us have run into this.

My pharmacy did not tell me either and when I went to pick up the medication, she pulled it out and showed me it was Synthroid. I have an allergy to the povidone filler in Synthroid and I told her I could not use it. She volunteered to call my doctor to find a suitable replacement. She worked with me right there to find one. For me it is Tirosint. It is much more expensive but I'm going to have to live with it until Levoxyl comes back into production.

The medication itself is fine; however, apparently the containers used to ship the Levoxyl were giving off a foul odor and making the meds smell. They pulled it all and, why it takes a year to get more out there is unknown to me.

I do agree that they could have notified Levoyxl customers in some way. It's not as if they don't have all of our information.
I see I'm in the same boat as some of you here! Strange how we all seemed to find out by going in to pick up our prescription. Shouldn't the dr. have called us to let us know? I think so. At least your pharmacist was helpful though.

I've started the Synthroid and so far so good. It's only been a day but hopefully the transition will be smooth. I really hate riding the thyroid roller coaster.

Has anyone else made the switch from Levoxyl to Synthroid? How are you doing?
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Old 06-05-2013, 12:52 PM   #2370
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Originally Posted by 3prettyprincesses View Post

I see I'm in the same boat as some of you here! Strange how we all seemed to find out by going in to pick up our prescription. Shouldn't the dr. have called us to let us know? I think so. At least your pharmacist was helpful though.

I've started the Synthroid and so far so good. It's only been a day but hopefully the transition will be smooth. I really hate riding the thyroid roller coaster.

Has anyone else made the switch from Levoxyl to Synthroid? How are you doing?
Good luck with the switch. Sometimes being a patient is so frustrating!!!

I have been on synthroid for 20 years. Both my endocrinologists have told me to always insist on synthroid. When my husband's insurance changed, the mail order pharmacy wanted to change to levoxyl and I had to make a big stink. @@.

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