Synthroid phone call?!?

Levoxyl is on recall. I have tried both Tirosint and Synthroid and documented intolerable negative side effects with both. A month or so ago, in a moment of frustration, I called Pfizer, who now owns Levoxyl. I just wanted to add my 2 cents, to let them know how much I needed Levoxyl and to plead with them to get it back on the market before 2014. I don't recall giving my phone number to the woman who answered the phone, but maybe I did. She suggested I try another drug. Well, duh. I told her I had bad side effects from Synthroid and she said to report them to my doctor (like I hadn't done that already!). I hung up.

So, today I get a phone call from Abbott Laboratories, the manufacturer of Synthroid, from a "Medical Information Safety Specialist," who wants to know about my experience with their product. What??? So pharmaceutical houses are now sharing information, including negative information, about reports on their products? Has hell frozen over?? I even have a case number, for pity's sake. In the meantime, I am adding Synthroid and Tirosint to my "Do Not Give" list of drugs because of the bad side effects. I don't think I will tell her that.

I know we don't have any privacy anymore, but this is just bizarre and makes me feel very uneasy. I guess I'd better get used to it - ?

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hope it works well for you.wishing all the best. your friend

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Thanks. I'm not on Synthroid anymore and plan never to be again. Take care, shore1.

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If you get on natural desiccated thyroid you will be listed automatically in the book of liberal left wing people. They will know.

I wouldn't worry about it too much. People get on Facebook and so on, then they wonder why they have no privacy too.

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Cabro, I haven't been following your story closely, but if you had an adverse reaction and told your doctor, he might have filed an adverse reaction form a government agency (I think it is the FDA) and then that may have subsequently been forwarded to Abbott.

Biomed, I certainly hope you are being sarcastic. I am a "liberal, left wing" type and I won't and would never take Armour unless all other options were exhausted. I thought your band wagon was T3, when did you switch to Armour?

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Hey Cabro, They probably got your number from caller ID. I used to be a nurse and we would report side effects to the pharmacist who informed the Medical systems safety specialists. Anytime a side effect is shared, it is put into a computer bank where it is crunched with other side effects thereby giving you numbers like 0.4% of the people who took this drug had their hair turn blue. After the phone call they probably discarded your name.
Hope this clears it up a little bit.
Praying for all of us, Monica

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Sorry hlg60, I was just making light of the situation, nothing specific personal or anything meant at all. You could be right on the FDA adverse reaction report. Thing is they will care if it is a real adverse reaction perhaps, but not the many smaller reactions is what I feel. Just people will say they don't feel well for example, something hard to quantify. I think it is the fillers, they all have bad fillers of some kind. One would think by now some drug maker would learn to make fillers that don't have issues, I suppose the pills won't be as nice looking or perfect looking but who cares?

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I am on a cancer survivors list at a hospital I had a WBS at. They sent me an invitation to a cancer survivor's picnic. It felt weird to receive that.

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For many years I worked for a hazardous waste disposal company that removed waste chemicals from research facilities. The pharmaceutical companies are in contact with each other much more than you might think. Sometimes they even form temporary joint ventures if one company has a promising idea, but another has more expertise in that research area, etc. It also could be a complete coincidence if you are on their mailing list or did they site comments from your previous phone-call?

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Actually, negative information is reported to the Feds and it has to be shared -- this seriously is a public health threat. It is important to know why there could be a problem; I think it's a good thing they are following up. It means they don't want a trail of bodies. Let me thank you for helping all of us by giving up a bit of your privacy. Let us now hope that they act on what they learn.

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@TLBpmes: No mailing list. Abbott cited my phone call to Pfizer. I'm just kind of shocked. One company takes my complaint about the recall. I give a complaint about a substitute drug and they call the other company, pulling my phone number off caller ID and sharing it with them. Then the other company, a competitor, calls me regarding info I gave the first company. I just find this bizarre. No one ever gave a flying fig before this about patients having side effects. And there is a boatload of those patients. Should I then go and report Tirosint for my negative side effects as well? (no)

I don't know that I want to participate in any of this any more. If I do return their call, I will measure my words carefully, since whatever I say is going to end up on **everyone's** computer. ((shaking head)) The lesson: be careful what you say if you contact Pfizer about Levoxyl to tell them they have an excellent product and you just want them to hurry up and get it on the market. :-/

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Hi cabro, to some extent I am a bit reluctant to talk about my government days but many things come to mind as I read things here. I worked for NIH as a wonderful part of my career, my wife and I did medical research there. Anyway, what I saw in the government, this when it was responsible, will even make your head shake more. That is before the government got into even more craziness we have now with ever increasing medicare senseless codes, and tax codes that get bigger and so on.

Just a quick story or two won't hurt I guess...

When I first worked for NIH we interacted with FDA quite a bit. I was a good programmer and biomedical engineer. The handed me a quick programming assignment, take a 20 year old software program for evaluating the efficacy of the pertussis vaccine and re-write it into a slick new program for a Macintosh computer. I wrote it and it got used, probably still is by FDA. It cost my time and a Macintosh computer, say $5K total or something maybe $10K who knows can't remember how many hours I put in. But all pertussis vaccine got put through that software and maybe a few others in looking at it viability as a vaccine so it was important. I got nothing for writing that or anything other than my salary. In another floor was some nuts that convinced the government they needed these $50 million dollar high performance computers. So the government bought a dozen, gave one to NIH and the others to other government agencies. By the time some people I knew figured out how to program the dumb thing it was already surplus ready. The government spent $600 million on that and they were just playing around. Those people got promoted for that.

Anyway the government can be crazy and do crazy things. All of the whole medicare coding system used by our insurance system and medicare recipients alike, costs everyone who ever sees a doctor billions of dollars in people to figure out the codes and in insurance companies to oppose payment for the wrong codes, etc, yet no good comes of it. And why? The government is just crazy cabro....

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@hlg60: I seriously doubt that my doctor filed a report. This is not my first negative experience with thyroid meds and I feel certain it is it the first time he has heard of the side effects that are listed in the circular or typical of thyroid disease.

@Josie: Thank you for your sweet words, perspective and support. In the past, I have had an anaphylactic reaction to two drugs so I am able to appreciate some of the good intention.

@Biomed: Thanks for the bird's eye view and I have to agree with you. And it's really nothing that surprises me, but it does bother me. I was not able to call Abbott back today. If I have any new insight after talking to them I'll relate it here.

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"If you get on natural desiccated thyroid you will be listed automatically in the book of liberal left wing people. They will know"

@Biomed :
That made me laugh :D

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As a center right social conservative (yes I made that up as the current choices don't quite fit). I am proud to be listed in the book of liberal left wingers. Thank you BiomedEE, humour (Canadian spelling) is just what we need. I am a great fan of sarcasm.

Also, I agree with Cabro, having your name shared without your permission with anyone is unacceptable. We have privacy laws that are supposed to protect us despite some peoples' need to blurt everything out in Facebook, but that is different, that is a choice.

As for the other issue, I have successfully switched to desiccated Erfa Thyroid and so far am very happy. They have not had a recall nor a change in formula in over 30 years so I feel pretty confident that it is a good choice at least for me. With Biomed's assistance, I have made the change, added supplements and intent to start a journal with my progress. Its only been three weeks, so early days yet.

Cabro, good luck to you both in finding a solution to your meds issue and getting to the bottom of the information sharing. If the FDA had contacted you, with legitimate concerns about your experience, that would be another thing altogether.

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Thanks, AgiZ. I enjoyed the humor/humour, also. :-) They called again today when I was out. I'll try them back tomorrow and will report back. I plan to take the lead and ask them how they got my number and name, why they chose to call me when many others are miserable, too, on their product, etc. I'll report back.

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Hello,
Whenever you call someone, if they have any type of modern phone equipment, it shows the number of the caller, and if it doesn't one can just go to the phone directory of past calls and get the number. This feature has been around for quite a few years both in the business phone industry and private home phones. You have to set your own phone up to block your number from being viewed if you want privacy. Personally, I think it was wonderful the companies shared the information on your reactions to the drugs, it can only bring out a more positive outcome for the future of the drug's biological acceptance.
Peace,
Nancy

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I once had a boss who, while he did not have a suggestion box, often said he wanted inputs and suggestions. I found what he really meant was he wanted somebody to yell at. Everytime I get something that wants my feedback I often wonder if they are like my old boss, maybe not the same way but they will use the info against you in some way.... You report a problem and next thing you get on a list of people with psychological problems. Don't laugh too hard, used to be if you felt you had a thyroid problem and your TSH tested ok docs might try to refer you to mental health professionals. This field of thyroid disorders and thyroid hormone replacements is not a well developed medical field, the medicines are very deficient. The fact they work for some is great but their are huge issues. Let's hope some good comes of reporting issues, not like my old boss....

I told my phone company to not show my number to people I call, but everytime I call to activate a credit card or something like that it still activates the credit card and you must do that from your home number.

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"isn't"

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Well, I called them. They are required by FDA R&R's to follow-up on any report with a negative comment/feedback/report about side effects with their drug. I KNEW I shouldn't have called Pfizer. Now I'm tracked in both Pfizer's and Abbott's data bases. And as I recall, when I made the phone call a couple of months ago to Pfizer, I was distraught and kind of angry, thanks to the searing hot flashes I was experiencing, and very frustrated because the woman at Pfizer was quite clueless.

So, that is done. The woman asked a few things that I just said, "I'd rather not say." Height, weight, medications, and more. They don't have any right to dig further into my life. However, I did tell her about the widespread muscle and joint pain, the serious hair loss and the malaise/toxic feeling I was having. I answered and told her the dose (100) and why I am taking it (TT and subsequent hypothyroidism). I mentioned my age, when I said I didn't have hot flashes until the ripe old age of 67. She was mainly interested in the hot flashes. Unfortunately, they have not abated completely, but they are less frequent and less intense.

Before I hung up, I told her I was certain it was the fillers, and she didn't challenge me. And I told her that because of the Levoxyl recall, there are literally thousands of people who are stuck on their product and suffering a LOT. And I reiterated that it was the fillers. - maybe the dyes, but my bet is on the fillers, which I said were "bad news." She thanked me and I hung up, after asking that I not be contacted again.

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We can only hope that yours and other sufferers complaints will be heard, however I don't have much faith in the pharmaceutical companies desire to do much to help patients unless it has a positive impact on their bottom line. In saying that, if enough of us complain and start switching to other options, maybe they'll start taking notice. It is still annoying that your privacy was breached, but thanks for taking one for the team!

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