Allergic to All Thyroid Meds After Levoxyl Recall

Hi,

I am a thyroid cancer survivor (Hurthle Cell). I had a total thyroidectomy in 2002 and have been dependent on thyroid hormone replacement meds since. I have taken Levoxyl since the surgery.

After the Levoxyl recall my doc sent me Tirosint samples knowing I was allergic to Synthroid. He said it has the least amount of other fillers and other junk, and reading about it online it appears to be true. So I started TIrosint and about 8 hours later I started to get itchy. I stopped taking it, switched back to my back up supply of Levoxyl and the itchiness went away. I called my doctor and he sent me samples of 50mg Synthroid to try stating it had no dyes in that dosage. I took it for 2 days and broke out in hives on my face and head. I called my doctor again and he said to try the Tirosint again. This time I took it for 3 days straight and I just about lost my mind itching so much. Now I am back on Levoxyl (supply starting to run low) and my doc said if I am allergic to Tirosint and Synthroid then we have a "big problem." He said there are other meds out there but they all have the same ingredients as the meds I am allergic to, plus a bunch of other junk in them and they are not good for you.

I asked my doctor whats going to happen and he said either I take the Tirosint and "suck up the allergic reaction" or I have about 6 months to live after I stop taking Levoxyl.

Since the Levoxyl recall was a voluntary recall (not FDA mandated) I called Pfizer to see if anything could be done. The customer service line goes like this... "Press 1 if you are a doctor, press 2 if you are an investor, press 3 if you are a patient." I see the phone tree as a list of priorities and I knew it wasn't going to go well. When I got someone on the phone she was more concerned about getting my name, address, phone, etc than anything else. Once I got through that I explained the problem. All she kept saying was, call your doctor or pharmacist. When I asked if there were any Levoxyl pills in inventory she said "most likely, somewhere in our company." When I asked how to get a hold of these medications she said "it is impossible." I explained that if I am allergic to the other meds I am going to die. She said "I'm very sorry to hear that." I asked her under the circumstances, if it comes to that will Pfizer help me... "no sir, I'm very sorry" is all I got.

My doc gave me a script for generic so I could try it and I am going to take another chance at Tirosint hoping its a coincidence since my doc doubted I was having a reaction to it... I hope he's right... its worth a 3rd try.

Has anyone else ever run into this? Any ideas? I've done a bunch of research online but I am not a chemist or a doctor. I feel like I have been left to my own devices to save my life.

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Have you tried any natural dessicated thyroid? Someone else will know for sure, but I think there are two with minimal or no fillers. It seems like westhroid may be one...

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I would def try natural for sure. I take generic levothyroxine and there are different manufacturers so you may get a better response from one or the other. They do have dyes if that is what you are allergic to. Maybe one strength has less of a chance of causing a reaction and you will have to figure out dosage but that's a simple thing.

I wonder why they don't mention that as one of the potential risks of having our thyroids removed, that we MIGHT have an allergic reaction to synthetic thyroid meds. IF they did...I certainly don't remember!

Patricia

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Are you just having the itching could you take Benadryl would that help to relieve the hives and itching just a thought.

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There is a compounding pharmacy in Birmingham, AL. Medaus Compounding Pharmacy. www.medaus.com. Perhaps they can make a T4 compound for you that won't have allergens in it. You will need to get your doctor to write the script. I can't believe how callous he is. I hope you find someone to help you.

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I would also consult a qualified and experienced allergist right away to determine what the causes are and possibly how to desensitize you.

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Wow, thank you for all very much for all the great replies!


Hallies: I haven't tried any of the desiccated meds. I asked about them but my doc gave me a detailed explanation of why I don’t want them. He told me that by the time they get into pill form there isn't much left that is natural and said they are really bad for you. I say bad for me is better than dead. ;)

Patricia: I started generic this morning, I checked the bottle but the manufacturer isn't listed on it. I will call the pharmacy to find out which manufacturer as I should know either way.
The strange part is I remember asking during pre-surgery exam what would happen if I were allergic to the medication and the woman told me that I was already on the meds and I wasn’t allergic. I didn’t realize I would still be on Levoxyl after the surgery. She said it was a great question that no one ever asked which I find odd. Never thought I would actually be in this position.

Debbie: I am taking Zyrtec with Pepcid AC to help it absorb. I have been taking an antihistamine since I started on Levoxyl because I was slightly itchy when I starting taking Levoxyl but its not a big deal. When I took Synthroid I had full blown hives. Taking Tirosint I am just very itchy… like to the point where people in the same room are getting annoyed with me 

My doc gave me Atarax for night time in case I have more severe allergy problems. It’s a sedative so I haven’t taken it yet.


Cabro: I didn't realize they could make it for you. I will def check out Medaus to see what can be done. The only other thing offered to me was an IV with T4 @ $70/dose. I have a call into my doctor for an allergist. The nurse told me the allergists in the area are backed up 6 months. I'm sure if it became a situation they would expedite that (I hope)

Thanks again for all the replies!
Matt

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Is it possible for a compound pharmacy to make up the pill for you using all the ingredients that Lexovyl has under these circumstances? It might be worth a try

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Thanks for the reply. That is my next move depending on how the next round of pills goes. Should know by tomorrow night since I took it today.... :)

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Just as a back up I would look into it if you can. When I learned about the recall I bought an additional 6 months supply thinking it would be on the market by the end of the year, but who knows...i keep hearing it could be into 2014 in which case I'll be in the same boat. Let us know how you make out. Good luck.

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Same here... my dosage on the bottle was too high because my doc lowered it at one point so I was storing the extra meds just in case something happened. I didn't know about the recall until it wad too late. I ended up with about a month and a half of extra meds.

Today is day 2 of the generic and surprisingly I feel ok so far... hoping the generic works out!

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Hi Mattie: Which generic is that if i may ask. Thank you

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Sorry to hear of your troubles. I did terrible on Synthroid and switched to natural thyroid with good results. Your doctor is operating on very bad information and you may suffer as a result. It may a take a doctor switch in order to get to feeling better if you are like a lot of us here.

Look here for more details...
www.stopthethyroidmadness.com

Best wishes!

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Well, so much for that. The itching just started. Here we go again!

The manufacturer of this generic is Sandoz Pharmaceuticals Inc.

I will suggest the natural route again and check into the compound pharmacy

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Matt

Is it a specific color that is affecting you? I have these 125 mcg that are nearly colorless (peachy if anything). The 137s are blue (I think) as are the 150s. If the peach colored one don't affect you then maybe you should go with them or vice versa. You can always take more of one or less of another.

I'm wondering if its the fillers that are getting you as opposed to the coloring.

I am curious if you were able to contact the compounding pharmacy and what they had to say.

Sure wish you well!

P

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Thanks! We have eliminated the colors. The Synthroid 50mg tablet has no added color. That actually gave me hives... the worst one so far.

I take 2 - 125mcg pills a day for 5 days, and take 1 - 125mcg pill for the other 2 days. Mine are also almost colorless.

When I took the Tirosint, those pills only have water, glycerin, gelatine and T4 they claim, so there is no added fillers besides gelatin. Doc said if I can eat jello, I can take these pills. He was shocked when I told him I was having a reaction to it. Reading the warnings on the Tirosint I see all kinds of bad things, like sudden stoppage of the heart! One has to wonder why that could occur with only those 4 ingredients. Last time I checked jello didn't have any warnings on the box like that! So I can't help but to wonder what is happening to the T4 during the manufacturing process that may not be required to be released to the public. I wonder if its as simple as a chemical used to clean the manufacturing equipment.

I haven't contacted the compounding pharmacy yet. I was hopeful that today's allergic reaction wasn't really happening, so I held out. Now I feel like I have 10,000 bugs crawling on me. Yup, its really happening. :(

Oh well, off to the next adventure... probably compounding pharmacy. Will post results of that.

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I am going to throw out some long shots, but who knows?
change your pharmacy - some have been in trouble for buying drugs from who knows where....some drugs are fake and very dangerous - u can't tell and the pharmacy can't tell - look it up on google
do u have a fungal infection? Im not on the meds yet, but been very itchy and gave to my hubby - a week or so of fungal pills worked-
is it your washing machine or laundry soap - he washers
change the manufacturer
i was on nexium - didnt work for me - it is made in india - better results with dexilant from japan - what about pepsid?
just ideas but worth a look

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I called a few compounding pharmacies and found that some of them can't compound T4 because its too small of a dose being in mcg instead of mg.

I was referred to a another place which I just got off the phone with... Bedford Pharmacy, a compounding pharmacy in Bedford NH. They said they would do it, So I will call my doctor in the morning to see if I can get a script for it.

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I think Bedford is the compounding pharmacy an acquaintance of mine uses for another med and she did her homework. I'm glad you got so much cooperation and hope you get the help you need from bedford. Let us know.

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That is great news and yay for the pharmacy. I wish we could get a spot on television explaining the problems being encountered with lack of the production of the medicine some of us need and the whys behind it. So many people, including myself, are not aware of these awful allergic reactions and the fact that we have to be on the meds to live and we have to be kept stabilized because of thyroid cancer.
Please keep us informed .

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