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Tirosint, what are you doing to me?

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
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649848 tn?1534633700
COMMUNITY LEADER
From my discussion with the manufacturer of Tirosint, I will respectfully disagree with your comments about the contents.

Insurance will not cover Tirosint either, because it's not a preferred brand, and it's very expensive - more so than either Synthroid or Levoxyl.  I've been paying full price for it since I began taking it.  It doubled in price last fall, then just took another small hike a couple months ago.  If it continues to go up, I'll stop taking it, myself.

Sounds like your doctor has something of a conflict of interest, putting everyone on Levoxyl, just because she's on it.
Helpful - 0
Avatar universal
Hi, what I meant is that some people who are sensitive to MSG...can react to free glutamates that occur naturally as a result of processing. Many people have problems with gelatin used in gelcaps for this reason. It's not that MSG has been added to the gelatin, it's because it contains free glutamate naturally and people who are sensitive cannot handle it.

I understand that it takes time to adjust to a new thyroid med. However, in my experience...when I have been overmedicated, the hyperthyroid symptoms do not disappear within a day of stopping the meds. This is because of the long half-life of T4. So, it will take several days for the symptoms to resolve. If there is immediate relief upon stopping the med...it is probably because the symptoms were caused by an intolerance to one of the inactive ingredients. It is not uncommon for thyroid patients (especially autoimmune patients) to have sensitivities to the binders/fillers. This is why Tirosint may be wonderful for you...but a disaster for someone else. The same way Levoxyl worked great for me...but others have not had the same experience. We are all different.

I talked to my Endo about giving Tirosint a try...and she informed me that since Levoxyl is back on the market there is no reason to try a new brand. While I had no problems with Levoxyl...and felt good for all the years I've been on it...it is also possible that I may feel even BETTER on Tirosint. Or not. There's no way to know without trying it out...right? The Endo. is a fan of Levoxyl, since she takes it herself and does not want to have to pay a higher price for Synthroid. She feels as long as the demand for Levoxyl is high, we can keep it on the market....so she has her patients on Levoxyl rather than synthroid. She only has one patient on Tirosint and she was not eager to let me give it a try...to say the least. She did tell me that the patient seems to be doing ok on it.

My problem now is that my insurance no longer wants to cover the Levoxyl...only generic. I cannot be on the generic for much longer or I'm gonna lose my mind. I haven't felt this bad in years. At some point I may try Tirosint but right now I just wanna get back on track with Levoxyl. I first went over active shortly after being switched to generic...TSH was low and I thought I was about to have a heart attack and was having difficulty breathing, chest pain, etc. I stopped taking the pills for a week, then got back on at a lower dose. I get headaches and blurred vision when I take the pills...and feel better on days that I skip it. Now I'm losing a lot of hair and Im most likely under medicated since I hate taking these pills and am constantly skipping my dose. This recall has really been a nightmare for me.  I'll get back on Levoxyl even if I end up having to pay full price.
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Avatar universal
I have been on Tirosint for a few years and have been doing much better. Switched from Synthroid and with Tirosint many of my allergy issues went away. You do need to start on a lower dose as Tirosint is much better absorbed, at least for us that had issues with fillers in other products.
Helpful - 0
2 Comments
what would be considered a lower dose? I was on nothing, my thyroid levels are all on the low end of normal, esp my freeT4, my dr started me on 50mcg of tirosint once a day. Is that low enough? I'm not liking some of the posts ive seen as far as side effect issues. I have enough problems, I'm taking it to feel better, not worse. I'm thinking about only taking it every other day.
The gold standard to determine if the dose is correct is to have another serum thyroid panel performed, and correlate that with your symptoms.
649848 tn?1534633700
COMMUNITY LEADER
While jello gelatin may have MSG and other ingredients, the gelatin in Tirosint does not.  I've talked to the manufacturer and am assured that the gelatin contains no other ingredients or preservatives.

There seem to be 2 main issues when people start Tirosint.  One is that many doctors try to start patients on too high a dose.  Because Tirosint is more thoroughly dissolved and much better absorbed by the body, many people need to start out at a lower dose than they had with the pill types of medication.  Once the body has become adjusted to the med, dosage can be increased as needed.

The other problem is not giving Tirosint a chance to work.  Whenever a T4 med/dosage is changed, it takes 4-6 weeks for it to reach full potential in the blood.  It's not the least unusual for symptoms to worsen or for new ones to appear, while the body is adjusting, but people immediately blame the med and stop taking it.

I've been on Tirosint since it came out in 2009 and while I did have a bit of issue right at the beginning, once I worked through that, I've done very well on it.

That said, Levoxyl is back on the market, with no reformulation.  Some of our members have been taking it, again, since the beginning of this month.
Helpful - 0
Avatar universal
Hi, I found this thread while seeking information on Tirosint. I was switched to generic levothyroxine when Levoxyl was recalled last year and have not done well with the switch. For me, fillers/binders are a major issue and usually if I'm not doing well on a particular thyroid med or supplement...it's the inactive ingredients that are causing problems.

I've noticed that a lot of people are not responding well to Tirosint...even though it is supposed to be hypoallergenic. The thing is....gelatin is problematic for many people because it contains free glutamic acid (MSG) and sometimes sulfites. People who are sensitive can experience symptoms such as cramps, headache, chest pain, diarrhea, etc. I am betting that some of the people who respond with these symptoms while on Tirosint and then feel better almost immediately after stopping the med...are reacting to the gelatin. While it may have less ingredients than other thyroid meds...it is certainly not "hypoallergenic".  

Having said that....I'm going to give it a try...but I do not have high hopes after reading these posts and knowing how sensitive I am. I do know my reactions well enough to know if the ingredients do not agree with me...so at least I won't be suffering for long if it doesn't work out. Unfortunately, with the Levoxyl recall (and I doubt it will be coming back without having been reformulated) and after the reformulation of Armour back in 2009...it is becoming increasingly difficult to find a thyroid medication that will work for those who are sensitive to fillers/binders, such as myself. Fingers crossed that the Tirosint will at least be an improvement from the generic I'm currently on.
Helpful - 0
3 Comments
The problem with gluten in thyroid medication is the whole gluten.  Gluten is wheat protein.  In almost 1% of the US population, Gluten ingestion causes an autoimmune disease--Celiac disease.  It is a different type of immune reaction than the allergic reaction people with hayfever or food allergies get.  

Hashimoto's hypothyroidism is very common in Celiac patients.

I have Celiac disease and my insurance, Kaiser Permanente, will not cover Tirosint.  They want me to continue on the gluten containing Levothyroxine.  It is costing me $100 per month.
The problem with gluten in thyroid medication is the whole gluten.  Gluten is wheat protein.  In almost 1% of the US population, Gluten ingestion causes an autoimmune disease--Celiac disease.  It is a different type of immune reaction than the allergic reaction people with hayfever or food allergies get.  

Hashimoto's hypothyroidism is very common in Celiac patients.

I have Celiac disease and my insurance, Kaiser Permanente, will not cover Tirosint.  They want me to continue on the gluten containing Levothyroxine.  It is costing me $100 per month.
Both Synthroid and Levoxyl are gluten free, as are the generics produced by Lannet and Mylan.

You're correct that Tirosint is not covered by many insurance companies.  I was on it for several years and had to go off it because it was costing me nearly $160/month.  If you qualify, they do have programs for people with low income.

In addition, some insurance companies will cover Tirosint if you can get a letter from your doctor stating that it's the only replacement thyroid medication you can take.  

I'd like to point out, this is a very old thread and I'm the only previous participant still active on the forum... It's unlikely any of the others will respond to your comments.  It would be best to start your own new thread...
428837 tn?1250007204
I'm not really sure what your endo is thinking in reference to the Tirosint or your enlarged thyroid. Tirosint and I did not get along. Even though my TSH was "normal," my symptoms finally drove me to ask for Nature-Throid, which seems to be working much better.

What actually got my attention was your statement ~ "they found "masses" that they believe are enlarged para-thyroids." If they suspect a parathyroid problem, then they should definitely be checking your calcium and PTH (parathyroid hormones). Enlarged and misbehaving parathyroids can cause a whole range of symptoms. The best information around (and my endo even recommended this site) is at parathyroid.com. I have been spending a lot of time there myself, because they suspect I have an enlarged parathyroid (seen on ultrasound and scan). At any rate, it's something that should be followed-up on.
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