Can't get Levoxyl and switching to synthroid

I have been on Levoxyl since the beginning of my thyca journey. Now they have to switch me over to synthroid. Is anyone out there having problems getting levoxyl? I was told by the pharmacy that there was a supply problem with the manufacturer.

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So When Levoxyl comes back on the market, Synthroid can take its turn with a recall. They have had issues in the past too. Unithroid is not available in the 137 strength. Also you have to see if distributors carry all of the lesser known brands.

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It's stressful that we don't have control over access to a hormone replacement that we need -- and I appreciate that you all let me vent about it -- thank you! I know I sound like a big baby, but I actually had a nightmare because I've been fretting over this...I had a terrible dream that ALL of the levo brands stopped production. When you are asleep, logic doesn't apply : )

I wrote a letter to two folks at Pfizer via email -- looked up their exec team on the website, chose the ones whose role is applicable to this situation, and guessed (correctly) at their email addresses -- and sent this (see below). I'll let you know if I ever hear back...it's unlikely, but I at least feel better that I tried my best to hang on to Levoxyl! : )
Also, I noted in my signature my address which is only a few blocks from their headquarters...I figure I'd like to freak them out a bit that I'm a nutcase who might come find them in their office! : )
****

Dear Mr. XXXX (removed name as I don't know if Inspire has a policy on that),

I seek your expert help in learning the latest information regarding the status of Pfizer/King Subsidiary's Levoxyl product. In your role as the head of Pfizer's Specialty Care and Oncology, I am hopeful that you will assist me so that I can determine the next steps in my cancer care.
I thank you in advance for your time.

As you know, yesterday medical professionals were informed that due to the voluntary recall "it is anticipated that Levoxyl may not be available until 2014."

As a thyroid cancer patient, I take Levoxyl to maintain my suppressed TSH and prevent the thyroid cancer from returning. As a loyal Levoxyl customer since my thyroidectomy in July 2011, I hope you can tell me:

a) If Pfizer will continue to manufacture Levoxyl?
(I recognize that business factors, such as the possibility of Pfizer splitting its drug operations into two units, may impact Levoxyl's future)

b) If yes, exactly when manufacturing will resume?

After my thyroidectomy, I chose Levoxyl because I wanted a brand that had a consistent source, with no variations in fillers. I am satisfied with how I feel on Levoxyl, and I don't want to switch to another brand unless absolutely necessary.

If you can provide a more specific date that Levoxyl production will resume, I can then determine if I can cobble together enough of a supply (by paying out of pocket to purchase outside of my insurance company, from different pharmacies who still have it in stock) to last me until then. I am willing to undertake that level of cost and effort to stay a Levoxyl customer.

I am surprised that from a marketing perspective, Pfizer is not providing further details. As you know, adjusting to a synthetic hormone is not as simple as trying on a pair of shoes! Due to the lack of information provided regarding the return of Levoxyl, frustrated customers will switch to other brands or the generic, and they won't come back.

Please reward your faithful customers, who want to stay with Levoxyl but need more information to do so.

I look forward to your response.

Best regards,

GG

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I saw my endo this morning. I have two days left of Levoxyl. She wants me to switch to the generic. "We'll just do bloodwork after 6 weeks to adjust your dose." joy. I didn't ask for Synthroid because I didn't want to argue. This is endo #3 and I'm not even at the 1 year mark yet. I needed Cytomel and it was hard to find an endo who would prescribe it.

My pharmacist has no clue about keeping generic manufacturers consistent. I'm really not looking forward to the roller-coaster ride I could be on. I think I'll talk to my PCP about ordering Synthroid, and get up the courage to talk to my endo the next time I see her in September.

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One endo will not write "dispense as written" unless you tell them and that can create confusion unless you specify to the pharmacist what you want beofre he fills. One endo that I am supposed to follow every 5 years for cancer monitoring will not do cytomel. The second endo will but does not want me to do US with the first endo as he can do it all. I have to maintain bridges with the cancer endo should cancer ever return. I am giving the Phizer letter to the PCP today so I can have a script for synthroid available since endo appt is not for 4 mos. The PCP is helpful with scripts and labs yet totally ignorant of fine tuning doses. Then I will come to the endo with a pile of labs as I need to check every 6-8 weeks and they will be uptight as they did not order as if I should go thru them for everything (ideal but the appts are not easy to get into) When it comes to anything about our health, we need to really create the best bridges we can with what limited help we may have at times. This is true for our meds. To always have a script in our wallet for emergencies and to make sure we have some stock for the unforseen. I am thankful for mail order as I never run close to running out. I just had a root canal and I wondered today if I would feel this good when I switch brands, LOL! I wondered when I woke if I would feel as clear as I do now switching after feeling so lousy for so many years. It is amazing how others never think of the little and big things that we do relying upon a hormone to keep us alive....... The fallout from Thyca is a daily journey.........I want to just go and forget about the details say this recall and the Saturday I found out, it took up a whole morning to recoordinate my plans for prescription fills, doc appts, travel, blood work timing, etc.

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I have a question for everyone here. When they were trying to figure out my proper dose, I ended up with a variety of strengths of levoxyl. I have 137 and 100. What do I do with these pills? I know I am not supposed to throw them away.

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I will need to switch also. I'm thinking of the newer thyroid drug which is a gel cap "Tirosint". It's straight T4 with no fillers. Has anyone researched it?

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Can you just cut your odd doses of Levoxyl to average the same amount you take per week? same difference. Tirosint cannot be crushed in the event you are needing to do that or have a procedure that makes it hard to swallow for a time.

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You cannot split pills with Tirosint?

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You can't split the gel cap but the Endo can prescribe two different doses to make it work. I take .125 everyday and on Wednesday I take .125 plus half which is another 62.5. It will be interesting to see what they do when I get switched in May. I have a feeling I will get .125 and .50 to start with they can always add the .13 if needed once a week. From what I understand we absorb Tirosint better and may even need less. Has any one who switched to Tirosint found they need less?

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You have to pay a separate amount for each dose of Tirosint? So 2 prescriptions of 2 different levels at a time while pill splitters could just pay for one presription at a time? Good luck! I just got a script for Synthroid so hope that the same doses will keep about the same TSH.

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I called Pfizer yesterday and hear is what the Pharmacist at Pfizer said. They were shipping the Levoxyl with " Oxygen Absorption Containers" to absorb the moisture in shipping. The oxygen absorption containers were omitting an order that retail pharmacies and patients were complaining about. They started investigating the smell and the FDA got involved. The FDA felt they needed to pull in off the market. I asked if they were also doing a recall from the patients and he said no. They had found that "At this time we have not found any health disadvantage in the pills". Whatever that means? The reason that it won't be back until late next year is the plant Hill's" makes multiple drugs which each have to be setup for manufacturing, lengthy process. They don't make Levoxyl all year around. They have a window of time each time they make it. They also make Advil which is a huge amount compared to Levoxyl. So they need to fix the problem and wait until our next scheduled time to make, otherwise taking us out of schedule to produce earlier would throw all of the other drugs off schedule and cause a huge back order on all the other products.

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Just an update regarding the emails I sent to Pfizer's bigwigs: to their credit, they did individually respond to me (!!), and apologized for the inconvenience, and explained that because any changes in manufacturing require rigorous testing, they unfortunately couldn't be more specific about when Levoxyl would be back on the shelves than "mid 2014."
For me, it was important to feel "heard" and that I've done everything I could to figure out if "stockpiling" was a feasible solution (it's not, since the med will be off the market for a year).
So now I have accepted that when my current supply of Levoxyl is up, I'm switching to Synthroid, and I'll assume (and hope!) that I do just as well as that.
Darnit! : )

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I hope everyone reports back after they switch and post updates on what they switched too and how they are doing.

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Levoxyl and Synthroid are brand names. Levothyroxine sodium is generic. Levoxyl was unique because it was made without fillers; it was a little tricky because it dissolves so quickly. Synthroid is another commonly prescribed brand name. Likely, it is easier to swallow but it is possible we might have a reaction to the fillers. I join folks who are distressed. The reasons for such a strong reaction to a relatively minor problem is preplexing and raises suspicion. I will probably switch now so that I will have time to get settled before my blood work in June.

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I will also be switching I suppose, which really freaks me out too. The call is into my endo. I got a little bit crabby with the pharmacist when she gave me this news and she didn't have any solution for me. Hopefully my endo will just change me to Synthroid and the switch over will be ok. I'm not really up for a roller coaster ride of levels.

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When I do switch it will be the 5 year anniversary of the day after my TT when I started Levoxyl. I was stable on meds and only needing monitored annually for once. If it was most anything else except a heart or endocrine issue, I would not have been stressed to change. Very few understand why things are so critical for us.

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Please still contact Pfizer! They DO want to know! Just got a letter from them today!

“Thank you for taking the time to contact Pfizer, Inc., regarding experience(s) that occurred during treatment with Levoxyl. Please provide the applicable information requested below, so we may be able to obtain further data from your treating or prescribing physician regarding these experiences.”

“Pfizer, Inc., maintains a medical event database comprised of all reports received from patients, consumers, and health professionals. In protecting the public health, we along with global regulators (e.g. US FDA), rely primarily on health professionals to provide follow-up information on the events or symptoms that are reported. The physicians input is, therefore, extremely important as it is used to monitor the safe use of our products and to develop accurate prescribing information.”

“A postage paid envelope is enclosed for your convenience. Thank you once again for your cooperation.
Please contact our cal center at (800) 438-1985 with any questions you may have regarding this correspondence.”
“Sincerely
Safety Evaluation & Reporting
US Drug Safety Unit

fill out form requires:
patient name and address
Treating/prescribing Physican name, telephone # and address regarding Levoxyl experience
AND Drug Lot Number and Expiration Date!

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I got the same letter but it is for adverse reporting to the FDA. I am not having a problem with Levoxyl. I have a problem with it not being available anymore. Do we say that switching to any other med is adverse? Then we would have to blame Synthroid for more labs and dose changes???

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yes! that is what I plan on putting in my letter! Do not change the formula! for whatever good it does..they want to hear from drs not us the ones it affects.

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CanDoGal what did you switch too?

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