Tirosint, what are you doing to me?

[librarygirl2]

I have been on Tirosint since November but I could not last longer than 10 days in a row on it.  Why? Because it gave me the following side effects:

- Intense sleepiness after taking it
- Hair falling out everywhere I go like it's supposed to be a sweater
- Anxiousness
- Heart beating rapidly
- Sweats and increased body odor
- Buzzing inside body like being really wired
- Teeth pain and dry mouth
- Anger issues
- Muscle pain
- No period

I was taking 50 mcg after being switched over from Synthroid 50 mcg. Not sure why my body reacts so weird to it but I couldn't even take it long enough  (6 weeks) to get a TSH, FT3, and FT4 test.   The sleeps and the hair loss was too much to deal with.

Anyone else have reviews with Tirosint?  I really was hoping that it would work for me but it was not the miracle treatment at all.

Thanks!

Can anybody else

[RachelMarie24]

Synthroid gave me the worst reactions of all the thyroid meds I've tried. When Levoxyl was recalled the pharmacy said that if I didn't want generic I could take Synthroid...and pay out of pocket over $200! Crazy! That was for a 3 month supply I believe...and 3x the normal price because I take 3 pills daily.
No thanks! I wouldn't even pay $10 for synthroid. Ridiculous.

Sorry that they keep raising the price of Tirosint on you.  I hope if you end up switching to Levoxyl you will do just as well on it. Good luck! I just picked up my pills...so hopefully I'll be back to myself before Summer and no more hair loss! What a roller coaster this has been!

[Barb135]

Unfortunately, when dealing with insurance companies, what we think should happen, often doesn't.  I used to be on Aciphex for GERD and even with letters from my doctor, my insurance refused to cover it, once the generic omeprazole came out.

Hope the Levoxyl works out for you.  If I have to change from Tirosint, due to the cost, I'll probably ask for Levoxyl, as I didn't do well at all on Synthroid.  Did better on generic levo, but the best with Tirosint.  Because I've done so well with Tirosint, I haven't seen a need to try anything else, but now that the price is going so high, I'm having second thoughts.

[RachelMarie24]

My feeling is that a lot of the time when people never seem to feel right on their dose...regardless of their labs or how much they tweak the dose...it is the inactive ingredients that are preventing them from feeling 100%.

It took me a long time to figure this out for myself. Even while I was on armour I felt that I was doing good (in comparison to how I'd been feeling on other brands)....but when they changed Armour and I was forced to look for something else...I found that I felt even better on levoxyl. These problems I've been having on generic levothyroxine is the same way that I used to feel ALL the time on other brands. Headaches, increased sensitivities, blurred vision, etc. It stops when I stop taking the pills. I have the same problems with supplements and I usually have to look online for brands with no fillers/binders. It's a challenge...but it's worth it to feel as good as you can possibly feel.

[RachelMarie24]

I would think that if a patient doesn't tolerate the other options...that Tirosint should be covered if the doctor is recommending it for the patient. The doctor would have to explain why it's necessary and give approval. I just called the pharmacy and they said that my prescription for Levoxyl went through yesterday. Insurance is now covering it and I can pick it up today. Yay! I'm so relieved!

I think if I had problems with Levoxyl and Tirosint was the only other option...it could probably be approved. But like I said, I've done well on Levoxyl in the past and the Endo has a thing for it...so it's highly unlikely that she's gonna go out of her way to get the Tirosint covered as long as I'm doing fine with levoxyl. So I guess I won't be trying it any time soon but I'm still curious how I would have done on it.

I have always taken the 50 mcg white pills because of the dyes. My dose is 150 mcg...so I take 3 pills. 150 mcg turned out to be too much when I was switched to generic and I went hyper for several weeks. This was my first experience with a generic and neither the doctor or the pharmacist informed me that it could be completely different than the brand..or that I would need to be tested to check my levels. It took me awhile to figure out that I'd gone hyper. I then alternated between 150 and 100 every other day. Still didn't feel good...and I'm now down to 100 on the days that I feel like taking it...which is maybe only a few times a week.

I'm gonna go back to 150 daily with levoxyl and hopefully I'll be back to normal soon. Fingers crossed! :)

[Barb135]

While some insurance companies allow exceptions for certain drugs, I've yet to hear of one issued for Tirosint.

If you check levothyroxine, there's one that people seem to have the least issue with.  If I remember correctly, it's the 50 mcg pill; it's white, so it has no dye, which seems to be an issue for some people.  You could try making your entire dosage from 50 mcg tablets or try a compounding lab who will use fillers that are compatible with your system.

[RachelMarie24]

I understand why you believe what the manufacturers have told you....that there are no added ingredients...because that is the truth. But to say that someone can't have a problem with it is like saying that a person who is sensitive to sulfites (a widely used preservative) will not have any problem with naturally occurring sulfites in wine or other fermented products.

If a person is sensitive...they can still react, whether the ingredient was intentionally added...or it occurs naturally. That's all I'm saying...and it's a well known fact. But you are right that nothing has been added to the ingredients in Tirosint...they are what they are....and for some sensitive individuals, they will cause a problem. True symptoms of excess thyroid hormone do not resolve in a single day. Just as it takes time for the hormones to build up in the body....it also takes time to come down after being over medicated. As a Graves patient, I have plenty of experience with being hyper as well as being over medicated after RAI....and it would be wonderful if those symptoms could disappear that rapidly...but unfortunately that just isn't how it works.

I agree that there is a conflict of interest with this Endo. It was my first time seeing her and I will not be going back. I assumed from reading this thread that Tirosint would be more expensive. If I could tolerate the generic I would stay on it...but since I have problems with the inactive ingredients...and because I have not been well on it...I'm hoping the brand (whether it be Levoxyl or Tirosint) will be covered if the doctor approves it as a medical necessity...which it truly is. Actually, I would still be taking Armour if they had never messed with the inactive ingredients...I was on it for about 3 years and doing just fine. It's soooo frustrating to just have the rug pulled out from under you after you've been doing well for a long period of time. :(