Generic Thyroid Medication & a Levoxyl Recall | Rheumatoid Arthritis Warrior

Generic Thyroid Medication & a Levoxyl Recall

This is a managing illness story that’s currently unfolding. A lot of people with Rheumatoid disease also have thyroid disease. I’ve been a thyroid patient for over 30 years, but I seldom discuss it because it was so well managed until…

Getting the right thyroid medication dose

Thyroid medication doses are very individual. Levoxyl comes in 11 different pill doses that can be split or combined. And that’s just levothyroxine (T-4). And there’s another brand, Synthroid. Plus, there is T-3, the active form of thyroid hormone, Cytomel (or liothyronine generic). Here’s my story:

A chronic illness is hard work. The hardest thing is getting the precisely correct medication for the right diagnosis that works perfectly with your system.

Until the hardest thing is actually getting that medicine.
Bear with horse

I’ve never experienced the former with Rheumatoid disease. I think I had a brief slight response to Humira, but the rest were as good as so much fruit juice. But, my thyroid disease has been well controlled for the last several years. In the past, my thyroid levels were life-threateningly high or low enough to induce thyroid coma (for those who know those labs, that was a TSH of 478).

Thanks to a good endocrinologist (after four who had no idea how to help), my thyroid has been easily managed the past 6 years – so much so that my doc told me last month to just check in yearly to be sure the prescriptions are still right. Sometimes I say I can’t imagine what it would be like to have relief from RA, and that’s true. But I do know somewhat, actually – since my thyroid has been treated so successfully in the past few years (I’ve had thyroid disease since I was 15).

Generic thyroid medication – no, thank you

If you have or treat thyroid disease, the first rule of thumb you learn is, “If the disease is stabilized, don’t change thyroid medications, and never let the usual brand be substituted.” Generic brands can vary up to 20% and still be sold, according to FDA.

Levoxyl recall in a perfect storm

A month ago, I had no idea what was in store.

1) When a generic for Cytomel finally became available, the mail pharmacy I’m forced to use sent me a generic instead. I noticed it was stronger and began cutting the thin wafer pills in half last year, with my endocrinologist’s blessing. Then this year, they sent a different generic – a thick pill – that’s noticeably less effective. Hello, lower metabolism and all of the symptoms that come with it. I was trying to figure out what to do about that when…

2) I got a letter from United Health Care saying, “You don’t need Levoxyl because it costs more. Generic drugs work just the same and we’ll send you some since it costs us less.”

3) I learned that Pfizer had announced a shortage of Levoxyl (with a rumor of a packaging issue, whatever that means). That day, I spent several hours reading articles and learned that after Pfizer bought the company that made Levoxyl, King Pharmaceuticals, they were closing plants where Levoxyl was made in Florida and Tennessee to consolidate. That day, the word was Levoxyl might be available in June. Last week, the FDA updated its sites to say they expect it to be available in 2014. There is more information now from Pfizer on the Levoxyl site: complaints of an odor caused by “an oxygen-absorbing canister” inside bottles led to a recall.

US FDA Drug Shortage page

US FDA Drug News Updates page Horses in Florida field

4) That day, I spoke 5 times with the mail order pharmacist. She was determined to help me get the better generic of liothyronine (generic Cytomel) and some real Levoxyl before it was all gone. She still had some doses in stock and agreed to request a prescription for an unusual combination of Levoxyl doses that I could split and combine to get the dose I need. All we needed was my endocrinologist to sign off on it.

5) My endocrinologist was on vacation for the next seven days.

6) By the time my endo doc got back from vacation, my insurance had changed pharmacies and all of that work was lost.

7) I had several calls with the medical assistant to the endocrinologist. She offered to get a generic prescription with the new pharmacy and I explained that not only was I worried about changing brands, which means changing doses in an unknown direction, but Levoxyl is also the only brand that doesn’t use lactose as filler. I’m highly lactose intolerant.

8) I made some calls to the insurance company and the new pharmacy, with no help.

9) Out of the blue, two bottles of funky doses of thyroid medicine arrived. Opening the bag, we found the two bottles that said “Take 1/2 a tablet daily,” but they were GENERIC. The only point of getting the funky doses was so that I could stay on Levoxyl. This is 40 bucks of lactose-laced medication – money down the toilet.

10) I still have the wrong generic Cytomel too. I’ve no idea what to do next.

It’s so much work to manage illness. It takes so much time out of your life. But I can’t give up – I remember how sick I was before my meds were right. I remember losing 10 lbs. in one week, eating even in the middle of the night to stop the hunger pain, with a resting heart rate over 120 for two weeks. I’m afraid changing these medications could awaken my autoimmune thyroid disease again.

Lame answers from the FDA on generic drugs

This pitiful FDA page on generic drugs says, “FDA does not allow a 45 percent difference in the effectiveness of the generic drug product,” but does not say what percent they DO allow. Several people, including industry representatives and pharmacists, have told me it’s 20%.

The same pitiful page gives ONE footnote for this claim: FACT: “Research shows that generics work just as well as brand name drugs.” The one footnote is a single cardiovascular generic drug study in 2008. Imagine if a patient blogger made such a broad claim based on a single source.

Most generic drugs are probably fine. We use generics every day for antibiotics, NDSAIDs, and other things. But an unknown dose variance in a daily thyroid drug, when your life depends on it, is different.

Apparently variance with generic drugs can have dire consequences with seizure drugs too.

Luis Treacy at Health Guidance agrees: Generic Versus Brand-Name Drugs. “Those claiming it’s dangerous to switch from one version of a drug to another are deceiving the public. The only exceptions are a few “critical” drugs that have a narrow range between blood levels that are ineffective, effective, or toxic. These drugs include digoxin (Lanoxin), levothyroxine (Synthroid, Levothroid), and warfarin (Coumadin). For this small number of drugs, blood levels should be monitored when patients switch from one formulation to another.”

Recommended reading

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

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54 thoughts on “Generic Thyroid Medication & a Levoxyl Recall

  • April 15, 2013 at 5:59 am
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    Wow! I never knew there was such a strong connection between Rheumatoid diseases and thyroid problems!

    I got diagnosed with both Hashimoto’s thyroiditis and fibromyalgia this past January (on top of my previous diagnosis of RA) and am now on the crazy medication train to get my thyroid in check.

    I already have issues with MTX being from a different supplier every time I get my Rx filled. Eek!

    I had no idea that lactose was used as a filler in meds… I’m fully allergic to milk (both lactose and casein have bad effects on me!) so now I’m going to freak out a bit.

    I was given Synthroid for my first go about with thyroid meds and my insurance charged me up the wazoo for the brand name. I got upped on my dosage (since my thyroid is still super sluggish) and suddenly my Rx was filled with the generic. I saved a boatload of money, but now I’m questioning whether it’s worth it after reading this post.

    Thanks for the scoop on the recall!

    Reply
    • April 15, 2013 at 8:37 am
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      Laura, I haven’t pushed hard on the lactose yet – I just opened this mail on Saturday – so I don’t know what their response will be at the insurance. The pharmacy knew & said they would never send meds w/lactose – but that obviously didn’t stick.
      As far as brands, if you can get the same exact generic every time, that would be like getting the same brand – if you can stabilize on one brand (even a generic), you are supposed to just stay with it. Of course the problem is making sure the doctor always writes the scrip for that same generic brand & that the pharmacy obeys the scrip.

      If you continue to feel sluggish, you could ask your doctor about supplementing with a small dose of T-3. There are a lot of websites about it out there – but it was what made all the difference for me when I met a doctor who didn’t dismiss my symptoms but convinced me to take a small dose of Cytomel & it worked. I just wish I’d known years earlier.

      Reply
      • April 15, 2013 at 8:39 am
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        By the way, according to the insert, I think Synthroid does use lactose too. If it didn’t make you sick though, maybe the amount is small enough? I don’t know how it is to have an allergy to milk – did the med give you symptoms?

        Reply
        • April 15, 2013 at 5:14 pm
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          I’ll be calling both my pharmacy and my doctor today to discuss this new info. My endocrinologist wants to stabilize my thyroid ASAP, so any new things I can throw her way as far getting me peppy will help! Thanks!

          As far as the lactose goes, it totally makes sense now why I get super nauseous in the morning after I take my levothyroxine. Thought it was just a sign for me to eat breakfast!

          Reply
          • April 15, 2013 at 9:25 pm
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            I remember my endo doc saying the same thing 6 yrs ago – that having my thyroid stable would make dealing w/the rheum “easy” as possible. Good luck.

  • April 15, 2013 at 9:22 am
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    I was diagnosed with hyperthyrodism in 1985. I had radiation theraphy and have taken Synthroid since. My GP told me then that generic was not the same as brand-name and he always wrote me a script for Synthroid. I remember him saying that the drug might be the same but the fillers used could be different and impact the effectiveness of the drug. He said he wouldn’t prescribe generics for his family. I pay more for Synthroid but I refuse to take a generic. Luckily, I now go to a specialist and she didn’t comment about changing to a generic either.

    Reply
    • April 15, 2013 at 9:26 am
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      You have a smart GP. The generics are great for some things, but it’s critical to know what your actual dose is w/other things.
      Maybe if the FDA were more strict about them being identical – but they are not.

      Reply
  • April 15, 2013 at 9:32 am
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    I have had hypothyroidism for over ten years. Been on sung brood
    And levoxothyrine the generic brand for
    Over ten years and have had no problem at all with the meds
    Also found out last year I have ra
    Good luck everyone

    Reply
  • April 15, 2013 at 9:46 am
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    Had radioactive pill to remove hyperthyroid. Best thing I ever did. Taking Methimazole for many years can cause rare but dire consequences. Am presently euthyroid but still too early only 3 months. May go on synthroid if I do not remain euthyroid.
    Reason for writing is to say. I been taking XELJANZ FOR 4 MONTHS NOW. MY INTERLEUKIN 6 AND TNF ARE NOW NORMAL! Many doctors do not do these cytokine test. They should. I was very very high.

    Now since taking XELJANZ NEW Pfizer RA PILL TWICE DAILY ALL MY BLOOD WORK INCLUDING SED IS NORMAL. Try it. It stops inflammation at the hub. I have tried Humira, Embrel, Simponi, Methotrexate.. You name it! Joints so badly damaged over the years. We all know the pain and misery and longing to do what others do normally.

    Reply
  • April 15, 2013 at 12:33 pm
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    I have taken levoxyl tabs for years. Refilled 11/2013 relived just know that’s when I become sick swelling of legs and feet. Numbness in left arm. it the recall more then smell?

    Reply
    • April 15, 2013 at 9:42 pm
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      The recall means you won’t be able to get a refill of Levoxyl until it’s over. They say your meds are safe – it is just a funny smell they got some complaints about – supposedly linked to the anti-desiccant (a thing in the bottles to keep the pills from getting stale).

      Reply
  • April 15, 2013 at 2:38 pm
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    There are different classes of generic. The class A generics work similar to the brand name, usually. The class B generics can be rather different. Caremark sent me a class B blood pressure medicine and it didn’t work at all for me. I have to pay more to use a local pharmacy but at least I have a choice.

    Reply
  • April 15, 2013 at 3:17 pm
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    For those of you that have Hashimoto’s, how did you get diagnosed? I’ve been trying to get diagnosed but since my thyroid is constantly jumping up and down I haven’t been. I have not seen an endocrinologist as all of the local ones have told me that I have to be diagnosed BEFORE they can see me. Any help is appreciated!

    Reply
    • April 15, 2013 at 6:55 pm
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      Hi Samantha,

      The way I FINALLY was dx’d was by asking my GP for the Thyroid Antibody test, not just a TSH. The Test Name is Thyroperoxidase Antibody.

      The normal range for this antibody test is less than 35 at my lab. Mine result was high at 193, but I’ve heard that it can run much much higher if you have the antibodies damaging your thyroid.

      My TSH was in the normal range, but if you have a knowledgeable Endocrinologist or you can inform your GP yourself, that anything 2.5 or above is now considered low. (Higer number = Lower Thyroid function)

      Hope this helps,
      Leah

      Reply
    • April 15, 2013 at 9:40 pm
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      I was diagnosed by a nuclear scan when I was 15. It did take almost a year for them to figure it out. If your blood test is borderline or normal right now, it can be hard to be diagnosed. Sometimes an ultrasound can help w/diagnosis. Do you have a GP who would order a full thyroid blood panel or maybe an ultrasound if something is abnormal?

      Reply
  • April 15, 2013 at 8:12 pm
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    I have hashimotos and went through this same nonsense when they changed the formulation for armour thyroid. P.s. – ever ask your doctor to write you a script for armour thyroid? they look at you and treat you like you are asking for percocet (just sayin’)..
    I started xeljanz and have been having symptoms of hyper along with my hypo, not sure if there is a correlation or it was a coincidence. Rarely, if ever am I hyper. My tsh is pretty low, but my free t3, free t4 normal range. I get to go see my endo and pay $50 this week so that he can ignore me just like he always does.
    Why did I choose to have this disease? :)-

    Reply
  • April 15, 2013 at 11:51 pm
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    So Kelly you use Optumrx? I’ve been using curascript for enbrel (forced to use mail order for specialties) and my partner’s company is changing to UHC so it will be Optumrx now. I keep hearing bad things about them. Anyone else with optumrx? Anyone with UHC run into trouble finding in network doctors? I already have two out of network doctors. As expensive as anthem is, I am really going to miss them.

    Sorry about the thyroid issues ladies. It runs in my family and so does autoimmune diseases so I don’t doubt the connection. And sorry Kelly for all the problems with getting the med you need. My aunt is unemployed and wishes there was a generic she could take.

    Reply
    • April 16, 2013 at 8:46 am
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      Hi Jenn, I don’t know much about them yet – I got switched to them last week. All I know so far is they sent me this useless bill. 😛
      For your aunt, if she needs to stay on a generic, have her doc write the specific generic she takes on the scrip & that is similar to staying on a brand because at least you get the same one every time. The pharmacist who was helping me & researching this (not at optumrx) said there is ONE generic out there without lactose also, in case that is an issue for her.
      They need to make exceptions for network when it’s a chronic illness patient who’s already getting satisfactory care – I know I’m singing in the wind there.

      Reply
  • April 16, 2013 at 12:32 am
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    I understand Samatha’s frustrations.
    This information is so helpful. Although I was diagnosed four years ago with RA there have been other strange, undiagnosed symptoms for about ten years – one of which was thyroid. My GYN ran labs and TSH was elevated. I went to my regular doc who ran labs and the TSH was still slightly out of range, but down from the initial test. I finally went to an endocrinologist who retested three times and it was within normal range. He said then he thought it was autoimmune, but nothing was done.
    More recently my rheum tested thyroid and found it elevated, gave a script for levothyroxine. It has not helped my metabolism at all. And, it has not been re-tested in close to two years.
    I’m totally frustrated trying to figure this out.

    Reply
    • April 16, 2013 at 8:57 am
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      Donna, you need a good endo doc. But here are a couple of ideas.
      A whole thyroid panel is needed for diagnosis, not just TSH. There are antibodies they can detect if it’s autoimmune – some specific to thyroid & you also need an ANA test.
      If it is true Hashimoto’s, an autoimmune thyroid disease, TSH will likely be a moving target – the levels will go up and down & be in the normal range at times, sometimes for long periods when you’re doing better.
      Getting a script from a rheum shows you have a compassionate rheum doc, but won’t necessarily fix it – because a good endo doc will monitor your symptoms with your levels & med dose to the exact correct dose for you. You don’t know if the dose your rheum gave you is right or not.
      Also, there are two forms of thyroxine – T-3 and T-4. The body is supposed to convert T-4 to T-3 by taking off an iodine atom, but in some cases, this doesn’t happen as readily with the artificial thyroxine – so there are two common solutions if the T-4 doesn’t work: add T-3 medication (see Cytomel in the article) or take a more “complete” thyroid medication such as Armour, which is made from pig or cow thyroid.

      Reply
      • April 16, 2013 at 9:08 am
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        Thank you!!! Education regarding this disease is seriously lacking in the medical world. This is very, very helpful.

        Strange thing is, after reading some of your recent posts about ‘connecting all the dots’, I’ve started doing that in my life. About thirty years ago I had an episode of heart palpitations that terrified me. Physician did an EKG and put me on a beta-blocker. I continued to have palpitations from time to time along with other symptoms that now cause me to wonder if it was thyroid related. Thank you for all the great info and sharing your and others stories.

        Reply
  • April 16, 2013 at 12:44 am
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    I was diagnosed hypo thyroid in 2009 (before RA). I was put on a low dose of levothyroxine. Then about a year after my RA diagnosis I saw an endo doc to try to help me get off prednisone (cortisol insufficiency). He gave me a bunch of Synthroid samples and said they would be better than the levothyroxine. I ended up in the ER having no idea why my pulse rate was around 130-140 and my heart felt like it was fluttering in my chest. Although the same dosage, the Synthroid was much stronger for me. My new endo doc has told me that many of them(endocronologists) have been trying to get this recognized- that when it comes to these particular drugs, generic is not the same and changing to a different generic or to name brand can do harm to patients. She stopped my thyroid medication and I have not been on any since- and my TSH T3 T4 levels have been fine now for over two years. What I did start during that heart fluttering horror was a beta blocker…. I’ll be on that one the rest of my life I’m told.

    I hope you can get the right meds soon. Please keep us posted.

    Reply
    • April 16, 2013 at 9:05 am
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      hi Lisa. great to hear from you.
      I was on a beta blocker for a couple of weeks during the thyroid “storm” I alluded to in the post – It’s hard to have a resting heart rate so high. Mine lasted for weeks and was not drug induced. But that experience makes me fear exactly what you said – you swallow some medicine with no idea what’s in store & then you have to wait out the long half-life of thyroxine so it will normalize –
      The generic levothyroxine could have had less of the active ingredient than the brand version of it, Synthroid or could just have different fillers so that your body handled it differently.
      I think this issue has been long recognized and it’s criminal that insurance companies can change the meds without any warning – and against the wishes of the patients and doctors.
      It’s easy to find many articles documenting this issue – the same with anti-seizure drugs & blood thinners apparently.

      Reply
  • April 18, 2013 at 5:36 am
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    I am quite upset about this. I was diagnoses with thyroid cancer in 2009. I had a full thyroidectomy and radiation, gained 30 lbs during treatment. I was first put on Levothroid, but never felt good, no matter what I did I could not lose more than 5 lbs and gain it right back, and I always looked swollen. I would have episodes where I would be in bed for 2-3 days, yet my thyroid levels were good on the Levothroid. Last year there was a Levothroid shortage and my endo put me on Levoxyl, suddenly my energy was back and I have not had those episodes! I finally lost 20 lbs and I don’t look so swollen. I don’t know if the fillers in Levothroid were affecting me but levoxyl sure made a huge difference. Now what’s gonna happen?? Frustrated!

    Reply
  • April 18, 2013 at 10:08 am
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    I have Graves Diease, and the roller coaster ride has begun. I have put in call to doctor’s to get synthroid ordeered, Walmart tells me today that Levoxyl has been recalled and my script ran out anyway. I told them they need to Highlight the experation on script. I look at the refills, and I had one left, and was recieving 3 mths supply, and they couldn’t tell me script was running out.
    It would have been too soon to refill! Geez, dont they care. I cant take levothyroxine, it makes me soooo sick. I also had the syptoms you have, told my heart racing was due to thyroid diease, but come to find out it was a congenital heart defect, I had heart inblation, and now it only does it for maybe 2 or 3 seconds.

    Reply
  • April 20, 2013 at 7:56 pm
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    Hey Jenn, I have UHC and have been using OptumRX for about 6 months for my enbrel. I have had no problem with my prescriptions with them. They have always been very helpful. The only annoying problem was I could only get 1 month at a time, where my other pharm would send 3 months. Not really a major problem just annoying. Good luck

    Reply
  • April 22, 2013 at 3:50 pm
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    I am hypothyroid. Because of the recall of Levoxyl, my doctor just prescribed Unithroid. I have not taken it yet and am wondering if anyone who has taken it has had problems.

    Reply
    • May 6, 2013 at 10:27 am
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      I took Unithroid prior to being put on Levoxyl. I didn’t have any problems with it. I liked it, but I liked Levoxyl a little better. I seemed to feel better on it. Hope you are feeling well.

      Reply
  • April 22, 2013 at 6:13 pm
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    Thanks for your insights on this. As a patient who has been screwed over by the FDA now twice, I’m at my wits end. Here’s my deal:

    I’ve had Hashimoto’s since 2001. At that time, I settled on using Levothyroid and have used that exclusively since then. Well, earlier this year, Levothroid supplies went kaput, so I’ve been cycling through all other options.

    I used generic for 6 weeks and didn’t feel all that great… not as good as with Levothroid. So, I tried Synthroid for 4 weeks and I felt OK, but experienced headaches and body aches that I never experienced with the other meds.

    I then switched to Levoxyl 4 weeks ago and have been feeling GREAT! Then, I go to refill my Rx and I’m getting generic Levothyroxine again and am told that Levoxyl is recalled.

    I’m so frustrated. So frustrated. Levothroid worked awesome for me and Levoxyl seemed to be a great replacement and now I’m stuck with a single, branded option that gives me headaches.

    How can they really recall two thyroid meds in such a short amount of time? I mean, I’m glad they are looking out for us, but this kind of overreaction to a supposed bad odor?!?!? There are real people who’s very health is now being compromised due to this. No fun.

    Reply
    • April 22, 2013 at 6:15 pm
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      Just adding a comment so I can be notified of emails (I forgot to check the box on submit earlier).

      Reply
      • May 6, 2013 at 10:21 am
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        Jason, ask your doctor if you can try Unithroid. I liked it pretty well, but my doctor at the time was having great success with Levoxyl and put me on it. I really like Levoxyl, but since we can’t get it, Unithroid might be a good option for you. Hope you feel well. Kendra

        Reply
  • April 24, 2013 at 7:56 am
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    I have had hashimoto’s since 2004. Started on synthroid and changed to levoxyl very quickly. I’ve been pretty stable on the levoxyl and agree one does NOT need to change brands. As for the recall due to a plastic smell, if they say there is no danger and only a smell to the drug then why can’t we continue to get it? I’m also insulin resistant and take metformin. Talk about smell!! All the generics for Glucaphage (metformin) stink to high heavens! Ivax was the only pharm making metformin that didn’t stink and it sold out to Teva a few years back. Teva kept their stinking formula and discarded the Ivax formula so now all generic Glucaphage (metformin) stinks!
    Isn’t it more damaging to patients health to change the formula that we take than to expose us to the plastic smell or small amount of plastic absorbed? Possibly they are testing that? Must be a strong absorbent material.

    Reply
  • April 28, 2013 at 12:33 am
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    Levoxyl is a very good thyroid replacement for me. I just started taking Synthroid again due to the recall. I’m feeling a little weaker than when I was on Levoxyl, but i’m looking for an endocrinologist in my area. Hopefully, I’ll last until Levoxyl starts being manufactured again. This really bites. I may try to get back on Unithroid. It was a pretty good hormone. Hang in there all you Levoxyl lovers. I’m one too. We need it back ASAP.

    Reply
    • April 28, 2013 at 11:02 am
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      good luck Kendra. finding an endo doc is a good idea – the levels in your blood need to be checked after changing brands to see whether the dose needs to be adjusted.

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      • May 6, 2013 at 10:16 am
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        Thanks Kelly. Hope you are well. I go to the endo today, so I’ll keep you posted (if I remember hahahaha)

        Reply
  • May 4, 2013 at 8:04 am
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    I’ve been on brand name Levoxyl for 10
    yrs. I think that there more to the story of
    why it taken off market. Anyone notice
    that it’s effectiveness has seemed a bit
    Off for some time? I have. On brand name
    Synthroid now & so far actually feel better.
    But, this does NOT excuse the drug co.
    for the way they left patients hanging.
    I won’t forget this stunt & sure many others
    Won’t either.

    Reply
    • May 6, 2013 at 10:18 am
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      Yes Beth, I have noticed a difference but time will tell. Glad you are feeling better on Synthroid.

      Reply
  • May 6, 2013 at 9:30 pm
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    I take Armour thyroid, the compounded version ( it comes in pill forms too). Synthroid does not address my issue because I am low on the side synthroid does not treat. Funny because my weight watchers leader figured that out before the quack endocronologist did. Six months later, I left weight watchers heavier than when I joined and left the endocronologist too. (Real short version of a long six month journey) A general practice doctor figured out what was wrong with one blood test. Hmmmm. I now take Armour thyroid because it treats the whole thyroid. And, I take a compounded version because the pills seem to go on backorder each year. It works very well for me. Thought I would add another option to the mix. Good luck everyone. Thank you, Kelly for a wonderful forum and support group.

    Reply
  • May 11, 2013 at 10:39 am
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    I had a TT on March 1, 2011. After years of health problems – and Dr’s not listening to me – I was finally properly dx and had my thyroid removed. It was a useless blob by then. I asked my Endo to put me on Synthroid because many of my family members used it but he put me on Levoxyl. I did great. No more crazy heart palpitations, my weight went back to normal from a crazy rollercoaster of 186 in 1999 to finally settling in at 125. Now with this recall I have been placed on Synthroid brand name which is weird because I was told Levoxyl was a ‘brand name’. I will start the Synthroid on Monday the 13th of May. I really hope I don’t have any issues staying ‘normal’. My TSH is at 1.74 – as long as I’m below 2.0 I’m fine. I did notice though for the past 6 months on Levoxyl I had some gastro intestinal issues ie: bloating, gas. I’ve lost some hair too. I don’t want to feel sick, lose hair or gain weight again. I felt crappy for 25+ years before having my TT. If Synthroid works just as well for me I’m staying on Synthroid. It’s no fun going from Hyper to Hypo and back again. The heart palpitations are scary.

    Reply
    • May 11, 2013 at 1:07 pm
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      thanks for sharing Angela. I agree going back and forth can be very harsh to deal with and heart palpitations are scary. Good luck w/ the synthroid – I hope you can stabilize on it quickly.

      Reply
  • May 14, 2013 at 2:07 pm
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    I have been put on brand name Synthriod
    since Pfizer dumped us. Did everyone know
    Pfizer posted a 20.91% net profit this qtr???
    They need it to pay legal fees. Patients
    stand your ground. The drug companies
    have only to answer to themselves, the
    FDA just sits there. We are the lab rats.
    Where are the attorneys to represent us??

    Reply
  • June 7, 2013 at 9:50 pm
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    I Am Having The Same Issue. Mine Gets Worse. I Was On Synthroid Until I Found Out That It Was Not Gluten-Free Any More. All My Autoimmune Stems From Celiac And Gluten! My Hashimotos, My RA, My LUPUS, My Dermatitis Herpetiformis… The List Goes On!!! So, They Put Me On Levothyroxine. My Mo Switched To Levoxyl. I Bloated Up In Less Than A Month And Have Been Trying To Figure This All Out For Years… Then I Saw How Levothyroxin Does That! I Am Looking For A New Med. I Know… I Have Been Through This Mess!!!!! I Was Balanced! My TSH Was Over 325 When They First Found It… That Was The Cap To The Test. An Endocrinologist Tested Me Years Later After A Switch And My TSH Was Over 725. I Was Balanced… I Don’t Need This. I Am 42 And I Also Found Out That I Have Osteoporosis… EEK! And Damage To Joints From My RA. I Really Need To Find Another Solution!

    Reply
  • June 12, 2013 at 11:13 am
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    Hi Kelly
    Just thought I’d write an update since being switched from Levoxyl to Synthroid. I only had minimal stomach issues for 4 days and by Friday that week I felt great. I feel so much, much better than I did on Levoxyl and it really aggravates me because prior to surgery I researched and told the Endo that I wanted to take Synthroid. Well, I was put on Levoxyl (brand) because it was a med that my Insurance covered – it was only $2 vs $23 for Synthroid. I wasn’t concerned about the cost I wanted the efficacy and that surgeon who is an Endo guaranteed me it was just as good as Synthroid. I felt okay on Levoxyl – but not great. Actually I didn’t realize how bad I felt until I switched to Synthroid. Having spent so many years feeling crappy because of a poorly functioning thyroid I thought I felt better after the surgery (and I did) but now I feel fantastic! I will NOT go back to Levoxyl. I was having gastrointestinal problems on Levoxyl, not daily but a few times a week and it seemed as if my levels weren’t consistent as I struggled with some ‘lazy days’. Then my Insurance decided after 2 years not to cover Levoxly anymore and it is the same cost as the Synthroid. My Endo actually asked if I wanted to try adding a T-3 regimen because while on Levoxyl there was just a certain something missing but I didn’t add it. What has also helped is taking my Synthroid at bedtime because I take supplements with my breakfast. I have always been slightly anemic and I read about how iron and thyroid hormone attach to the same cell (or something in that order) and that taking Iron supplementation is not really recommended unless a physician deems it necessary. My level is 11.6 – and 12.0 is where it should be. So, I’ve been taking Spirulina, just 2 in the AM with breakfast. My iron levels aren’t low enough for concern however, I bruise much easier and it seems to take forever for the bruise to heal. Is this a problem with thyroid levels being off – I am wondering because since the switch I still bruise easier, but not as badly as while on Levoxyl and now the bruises heal faster. Such small incidents cause me to bruise like bumping the coffee table or door handle. Spirulina has an abundance of protein and iron so the next time I go to donate blood I will find out if I will be allowed to – if my levels is 12 or above. Also I have noticed a great reduction in my hair loss which is a good thing. Thankfully I had very thick hair and never realized how thick it was until I lost about 2/3rds of it. My hair grows in length but I’ve lost so much thickness. I see lots of shorter hairs all over my head sticking out and I’m hoping they are new hairs as they are all the same lengths and not broken damaged hairs. My hair has gotten a lot drier since the surgery. Hope everyone is doing well and thank you for this forum.

    Reply
  • June 25, 2013 at 12:57 am
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    I have suffered for many years with a constant period that never went away. After 5 doctors not being able to figure out what was wrong and 3 endocrinologists trying different thyroid med brands, constantly telling me its not your thyroid. I was at a loss. When I was finally put on LEVOXYL my period returned to normal for the first time in 10 years! Now I had to switch to synthroid and my continuous period has started again and severely heavy! I don’t know what to do, my husband and I want another kid, but a hysterectomy seems to be the only option. Please does anyone know anything???? Is there any thyroid med most similar to levoxyl beside the generic and besides synthroid?? Desperate…..

    Reply
    • June 25, 2013 at 2:29 am
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      Alyssa, I am curious if you have ever tried armour thyroid? It is desiccated pig thyroid. Sounds gross, but replaces our own thyroid hormones. I am surprised so many on here are on chemical replacement. Just a thought. There is a website..don’t know if I am allowed to share, if not I guess it will be removed…stopthethyroidmadness. There are some very educated people who should be able to help you.

      Reply
    • June 25, 2013 at 8:58 am
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      Hi Alyssa,
      First, there are several medication options, so do not give up. There is more than one generic Levoxyl so you could try another brand, or there are some other types of thyroid meds, including the “natural” versions. I’m not sure what your other symptoms are, but have you talked with your doctors, an endocrinologist or a good general physician? And maybe your obgyn too.
      I don’t know the author, but I looked around for a good list of the options, and I found a blog you might want to look at: http://hypothyroidmom.com/which-is-the-best-thyroid-drug-for-hypothyroidism/ That post has clear information about options for treatments.

      Reply
  • September 5, 2013 at 3:04 pm
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    Hello Kelly
    I have R.A.
    I am so worn out I cannot anything done.
    My Rhumey thinks it is a Thyroid problem.
    I go to G.P. next week.
    What tests will I need?
    Thank You.

    Reply
  • August 19, 2014 at 7:34 pm
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    I have taken thyroid meds for 42 years. And I have taken just about all of them at one time or another. And I am really questioning the motives behind all these formula changes. I am no longer able to get levothroid, because I am told It is no longer being made. So, I was prescribed the generic.(I too am allergic to many of the others). It is horrible. I can’t remember from one moment to the next. My legs & feet swell all the time. I can barely get out of bed in the morning because I am in pain.I have arthritis too.It is appalling to me that they can change your meds without your knowledge let alone approval. I feel like I am part of an experiment. I don’t trust any of these companies or the doctors anymore. I wouldn’t be surprised if they are trying to thin the herd. Less cost for them.And isn’t that what America is all about anymore? Money. Over health.? To put it bluntly, I am sick of these companies & doctors playing GOD with my life. I might as well be dead because it’s made me almost a vegtable.

    Reply
  • March 13, 2015 at 7:55 am
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    I have had RA since childhood. Degenerative disk as well. Then I suspect thyroid disease after I had my 3rd child. Doctors put me on anxiety meds or antidepressants as I alternated between hypo and hyper. In the end I nearly died. I ended up passing out while visiting my mom in the hospital. My white blood cell count was 35k. I had vertigo and aphasia. My organs were beginning to shut down. They slammed me with antibiotics and steroids. Nobody figured out Hashimotos. I was in for a week and didn’t feel right after. About a year later I went back to college. A human bio Prof had us do a weight and excersize project. I gained weight during it. She told me “you have an endocrine disorder.” Based on other symptoms like hair loss and a persistent rash on my hands and face she said to ask my doctor. I did. They gave me a script for Prozac. I threw it out and after 15 years with that doc got a new one and asked for thyroid and antibody tests. I was a hashi mess. I am allergic to levoxothyrine. I had a headache for two straight months and itchy hands feet and face on it. Levoxyl was wonderful. I felt great lost weight…loved it. Got put on syntharoid after the recall. Had to add a ton of vitamin d supplements to my diet…but feel better…but have put on 26 pounds since going on it. Thinking of switching back to new post recall Levoxyl…not sure what to do. Have you switched back?

    Reply
    • December 6, 2015 at 4:52 pm
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      yes I did as soon as I could. it took a while to get it & insurance will no longer cover it (saying it is “an unnecessary drug”) since we survived the recall.

      Reply
  • August 11, 2016 at 11:18 pm
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    Thank you for taking the time to write this. After a bout of double lung pneumonia with sepsis, my perfect storm happened. As if managing HASHI’s and hypothyroidism isnt challenging enough, I’m now dealing with insurance company pressuring me to switch to a generic after getting dosage right and feeling better. I’ve read so many article, some helpful, some confusing. Your story helped me confirm my decision to stay with what works, despite the fact that it will cost me more money because it was just moved to the non-preferred lust by my insurance company.

    I see that this was written 3 years ago. Hoping that you are feeling the best you can be, and thanking you for your post!

    Sincerely, Carol

    Reply
  • January 12, 2017 at 4:48 pm
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    Has anyone ever tried ‘raw armor’…it’s given for hypothyroidism. I have only spoken to one person who was prescribed this, a nurse by the way, and she is very happy with the results. My husband was thinking about taking raw armor because he cannot get levoxyl anymore.

    Reply
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