Aa
Aa
A
A
A
Close
Avatar universal

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
214 Responses
Sort by: Helpful Oldest Newest
Avatar universal
I just wanted to echo what everyone has been saying about starting at a very low dosage. About a year or so ago, I started Tirosint at 88 and it was a nightmare. I was a basket case. So I figured it just wasn't for me. But recently my doctor said he wanted to try again, but this time go slow. So I started at 13 and felt great. Then after a couple weeks, he raised it to 25 and I felt fabulous. Then after another week or two, he raised it to 38, and I was a basket case again. So start low and go slow. It's helped me a lot now that I know what the correct dosage really is for me.
Helpful - 0
1 Comments
I am so grateful for this...  I've been struggling and missing out on my life since thyca stole it and have yet to find normalcy.  My FT3 is always in the crapper while my TSH has been at 0 for so long.  I thought maybe a nonexistent TSH was to blame until I've read this and my doc has lowered my meds to 150 where I feel even worse.  The insomnia and jolts during mid-sleep are what is killing me.   I don't feel so alone but I feel beyond miserable.  
649848 tn?1534633700
COMMUNITY LEADER
desertshawn... what are your actual thyroid hormone levels?  Have you had Free T3 and Free T4 tested? It's not unusual for symptoms to return or for new ones to appear when changing meds/dosages and sometimes we just have to ride them out.  It's also possible that they started you on too high a dosage of Tirosint.  Since it's more fully dissolved and absorbed than pill type meds, many people have to start out on lower dosages.  

If you'll post your actual thyroid hormone levels, we can much better assess your situation.  

Additionally, this is a very old and long thread, so it would be much better if you start a new thread with just your own information.
Helpful - 0
Avatar universal
I was diagnosed as having Hashimotos/Hypothyroid condition in 2012. My Endocrinologist put me on Synthroid/Levothyroxine however...within a short period of time, the long list of side effects began to kick in...irritability, sweating, hot flashes, insomnia, headaches, anxiety, with no change in my fatigue levels. After several changes in my dosage & pill colors, I ended up in the ER with severe heart palpitations & shortness of breath.  Finally decided to stop taking Synthroid until my new Dr in Hawaii suggested trying Armor. I took Armor for about 5 months with no side effects whatsoever. Then I moved back to Mississippi and my previous Dr refused to renew my Armor prescription said that my T3 levels were normal but my T4 was too low and suggested "a new pill" called Tirosint. About 3 weeks into my treatment (88mcg) I started getting daily severe headaches, stomach cramps & diarrhea, shortness of breath and then severe heart palpitations. I went back to the ER cause I thought I was having a heart attack.  EKG, blood work & chest X-ray all were normal. I stopped taking the Torosint and the side effects subsided after a few days. Trying to get another Endocrinologist assigned to my case since my current Dr will not consider alternative treatment.
Helpful - 0
Avatar universal
I was diagnosed as having Hypothyroid condition in 2012. My Endocrinologist put me on Synthroid/Levothyroxine however...within a short period of time, the long list of side effects began to kick in...irritability, sweating, hot flashes, insomnia, headaches, anxiety, with no change in my fatigue levels. After several changes in my dosage & pill colors, I ended up in the ER with severe heart palpitations & shortness of breath.  Finally decided to stop taking Synthroid until my new Dr in Hawaii suggested trying Armor. I took Armor for about 5 months with no side effects whatsoever. Then I moved back to Mississippi and my previous Dr refused to renew my Armor prescription said that my T3 levels were ok but my T4 was too low and suggested "a new pill" called Tirosint. About 3 weeks into my treatment (88mcg) I started getting daily severe headaches, stomach cramps & diarrhea, shortness of breath and then severe heart palpitations. I went back to the ER cause I thought I was having a heart attack.  EKG, blood work & chest X-ray all were normal. I stopped taking the Torosint and the side effects subsided after a few days. Trying to get another Endocrinologist assigned to my case since my current Dr will not consider alternative treatment.
Helpful - 0
649848 tn?1534633700
COMMUNITY LEADER
I am in total agreement with the ER doctor... TSH has no bearing whatsoever, because its only role is to stimulate the thyroid and once the thyroid is gone or no longer works, TSH has no role.  Adjusting the medication based on TSH "is" reckless and dangerous.

It's no unusual when changing from one medication to another for symptoms to worsen or for new ones to appear, as it takes time for the body to adjust.  

For your information, most of us feel better with Free T4 at about the mid range point and Free T3 in the upper half to upper third of its range... make sure that they are testing FREE T3 and FREE T4, not just T3 and T4, because that means they will testing Total T3 and Total T4, which aren't the same tests and don't give the same information...

If the endo insists on adjusting medication based solely on TSH, I'd recommend that you find a different one that will go by Free T3 and Free T4...
Helpful - 0
Avatar universal
Barb

My wife recently had her thyroid removed due to a large ( benign mass ) that was encompassing it.  Her thyroid was working fine, but due to the size of the mass, and the fact that they could not remove it without removing the thyroid, it had to come out. This was Dec 18, 2015.

She has been on the generic synthroid since, but a couple weeks ago the Endo switched her to the Name Brand ( I don't remember why ). Since the switch, she has had  shortness of breath, chest pain, back pain, jaw pain, dizziness, very tired, night sweats, numbness in hands and face.

Today these symptoms got really bad and I took her to the ER. Short story, they found nothing amiss as regards to cardio or pulmonary.  Her TsH was .046, but her FT3 and FT4 were normal, yet her Endo now wants to decrease her dosage from 125mcg/day to 100mcg/day based on the low TsH. She also changed  the med again to Tirosint, believing that the binders/dyes/inert ingrediants in the Synthroid were possibly the cause of her issues,

My question is this:  The ER doctor said that for someone without a thyroid, that the TsH levels are completely irrelevant as long as the FT3 and FT4 are where they should be, He said that TsH has no function what-so-ever except to tell the thyroid to make more or less T4/T3 - and beings she has no thyroid, basing a dosage change on TsH levels is reckless and dangerous.

Can you give me your thoughts on her symptoms, and on why does anyone care what her TsH levels are if her FT3 and FT4 levels are where they should be?
Helpful - 0
649848 tn?1534633700
COMMUNITY LEADER
Yes, I "can" shed some light on the situation... Your thyroid hormone levels are too low, indicating a need for an increase in the Tirosint.

Rule of thumb (where most of us feel best) is for Free T4 to be at/about the mid range point (50%); yours is only at 30%.  

Additionally, your doctor is ordering Total T3, which is obsolete and of little value, since most of the TT3 in your blood is bound by protein and can't be used.  You should ask for Free T3, which is the unbound portion and is the actual hormone that's used by every individual cell in your body.  That said, your Total T3 is only at 17% of its range... of that, approximately 90-95% will be bound by protein so there's only a very small amount left for your body to use.  Rule of thumb for Free T3 is upper half to upper third of its range... We don't know what yours is, but we can assume that it's nowhere near even mid range...

This indicates that you probably aren't converting Free T4 to Free T3 and may need to add a T3 component such as cytomel, but in order to determine that, you'd need to get your FT4 up to the mid range point, then see if FT3 tracks it up, which can sometimes take a while.

Symptoms tend to correlate best, which is probably why you're having so much hair loss - your FT3 is too low... insist that it be tested, along with TSH and FT4, next time you have labs.

Your ferritin is too low in the range.  Ferritin should be about 70.  Your iron is also rather low in the range, as is your % saturation.  These all indicate that you could use an iron supplement.  You can talk to your doctor, but he might tell those levels are good enough... adequate iron is necessary for proper metabolism of thyroid hormones.  Look for an iron supplement that's non-constipating.
Helpful - 0
Avatar universal
Hi Barb135,

I ran some labs by you a while back. I was wondering what your thoughts were based on my new numbers. My hair has not stopped falling out since the beginning of June 2015. I was instructed to start Rogaine because my hair situation is increasingly getting worse. I actually feel pretty good on the Tirosint 25mcg but need my hair to stop falling out. If you can shed some light on my situation I would be so grateful.

TSH, 3rd Generation 1.04 range (.40-4.50)
T4 Free 1.1 range (0.8-1.8)
T3 Total 94 range (76-181)

Iron Total 99 range (40-190 mcg)
Ferritin 33 range (10-154 ng/ml)
%Saturation 33 range (11-50%) calc
Iron binding capacity 377 range (250-450 mcg)
Helpful - 0
Avatar universal
I think it is sad that these doctors just want us to "take a pill" no one is focusing on this epidemic going on. I have read more people suffer from thyroid problems than heart disease and diabetes, yet we are pretty much ignored. Maybe we need to take this to Washington and have it recognized......there definitely needs to be more research about this autoimmune disease. A doctor with real compassion is what we need. It is so sad there are very few left out there. My doctor really doesn't listen to me. She wants me on Synthroid...I have did ok on it but what does it hurt for me to find out what else may be out there and may work better. I have asked to change to Tirosint. I am on day 2. No changes yet. I have noticed exercise, water, better eating, kosher salt and coconut oil in my cooking and a supplement also help very much.
Helpful - 0
649848 tn?1534633700
COMMUNITY LEADER
Yeah, yo\ur ferritin is way too low, as are your iron levels.

She's really right about retesting later, because you haven't been on the Tirosint quite long enough for it reach full potential - only, at this point, she could do it in 4 weeks instead of 6.  25 mcg isn't very much.

The iron increase might help... Be sure you get plenty of vitamin C with that because vitamin C is necessary to adequate iron absorption.

Helpful - 0
Avatar universal
My new endo wants me to stay on my current dose of 25 mcg of Tirosent. I'm getting retested in 6 weeks to reevaluate. I'm not quite at the 4 week mark so she is hesitant to make any changes at this point. Yes, she tested my ferritin and iron last week too. Here are the results:

Iron Total 78 range (40-190 mcg)
Ferritin 17 range (10-154 ng/ml)
%Saturation 22 range (11-50%) calc
Iron binding capacity 357 range (250-450 mcg)

She increased my iron to 354 mg but I've been on 150 corvita for 1.5 years. I'm assuming it just not enough. I take a biotin supplement for the past 6 months. Along with evening primrose and Vivisal for my hair.
Helpful - 0
649848 tn?1534633700
COMMUNITY LEADER
Both your FT3 and FT4 are still too low in the ranges...Most of find that we need FT4 to be at least mid range (50%) and yours is only at 40%.  Most of us also find that we need FT3 in the upper half to upper third of its range; yours is only at 42%.  You have a ways to go with both of those.

Did your new endo suggest increasing your dosage, based on those labs?  If not, s/he's probably not the right one.  

Also, have you had ferritin tested?  Ferritin is the iron storage hormone and low iron stores can cause hair loss, as can low biotin levels.  You might talk to your doctor about getting those tested.
Helpful - 0
Avatar universal
Hi Barb. I saw a new Endo last week and she did order the T3 Free in my labs. I'm almost at the 4 week mark of Tirosint. My hair is worse than ever. Here are my labs:
TSH .70 range (.40-4.50)
T4 FREE 1.2 range (0.8-1.8)
T3 FREE 3.1 range (2.3-4.2)

Let me know what your thoughts are. Thanks for all your help. It's much appreciated.
Helpful - 0
649848 tn?1534633700
COMMUNITY LEADER
Your dose of Armour was basically nothing, so I can see why you didn't feel well on it... we can let that go by the wayside, because you aren't taking that anymore.  

You're doing the Tirosint now, and while the labs weren't anything I'd call "good", you hadn't been on it nearly long enough for it to reach full potential in your blood since it, like all T4 meds, it takes 4-6 weeks to really "do" what they do.  You're probably still not on a therapeutic dose and once you get there, it still takes time for your body to get well (you do realize that hypothyroidism is an illness that you have to recover from?) and it will resolve the most important things first, so your hair issue might be the last  symptom to go away, because it's not as important as things like heart rate, metabolism, body temperature and other essential functions.

Once you've been on the Tirosint for at least 5 weeks, you need to retest, but part of your problem is that your doctor isn't ordering the right tests... Make sure he orders FREE T3, along with the Free T4 and TSH, then you'll have a much better idea of where you're blood levels are and you can go from there.  

It's not the Tirosint and it's not the labs (they're just numbers); you're not in a hair loss cycle... you're most likely hypo and you need a higher dose of thyroid med, but you need the right tests to get you there...
Helpful - 0
Avatar universal
And yes, I have a history of anemia. For most of my adult life.
Helpful - 0
Avatar universal
While on synthroid it made me lethargic, I constantly felt off, and I did not feel well.

The dose of Armour was his decision. Armour is when things really went downhill.

The Tirosent labs were after me starting it. I do feel better on Tirosent. More like myself and less issues.  Just my hair.

One of my Endos told me I was pre-diabetic. My sugar levels were higher at one point and I did have gestational diabetes.

I have been on Iron for a year and half and can't seem to get my numbers up. I was tested this week for an iron deficiency. Another Endo is looking into why my body can't absorb iron properly.  I've never been told I have a B-12 deficiency.

My hair is still falling out at an alarming rate. Could this be the Tirosent? Or and issue with my medication dose? Or my labs? Am I in a hair loss cycle? My last major hair loss cycle was Oct-Jan.

I'm desperate for my hair to stop falling out.
Helpful - 0
649848 tn?1534633700
COMMUNITY LEADER
Sorry, I missed the post with your labs...

First off your doctor is testing for Total T3, which is obsolete and not very useful.  He should be testing Free T3, which is the hormone that's actually used by the individual cells in the body.  

Even at that, it appears that you've never really been on a therapeutic dose of hormones, but then you haven't really stayed on anything, except the Synthroid, long enough, either and 4 months isn't all that long when you're hypo.

What didn't you like about the Synthroid?  

Why did your doctor only give you 15 mg Armour? That's like having nothing.

25 mcg Tirosint is a good starting dose, but 2.5 weeks on it isn't long enough for it to do much of anything.  Were the last labs that are labeled "Tirosint" done prior to starting the Tirosint or after you started?  Since you've only been on it for 2.5 weeks (well, 3 now), it hasn't been long enough to have labs that actually reflect the Tirosint, at its full potential in your blood.

On what basis were you diagnosed with pre-diabetes?  Both your insulin level and A1c are well within normal levels.

Your ferritin is dismal... are you supplementing iron to bring that level up? Do you just have a history of iron deficiency anemia or do you have B-12 deficiency as well?

Helpful - 0
Avatar universal
Hi Barb...wondering what your thoughts are regarding my labs.
Helpful - 0
Avatar universal
Before medication
T4 free 1.1 (range 0.8-1.8)
TSH .95
T3 total 94 (range 76-181)

Synthroid
T4 free 1.01 (range .78-2.19)
TSH .252
T3 total 1.35 (range .97-1.69)

Armour- T4 free 1.0 (range 0.8-1.8)
TSH 1.10
T3 total 84 (range 76-181)

Tirosent- T4 free 1.1 (range .08-1.8)
TSH .86
T3 total 125 (range 76-181)

Synthroid I was on for 4 months. Armour 6 weeks. Tirosent 3 weeks.

My thyperoxidase was >900

I have a history of anemia and I'm pre-diabetic. My last ferritin was 17.6 (range 11-306.8). Iron total 82 (range 28-170).  Insulin 8.5 (range 1.9-23). Glycohemoglobin 5.3 (range 0-5.6).
Helpful - 0
649848 tn?1534633700
COMMUNITY LEADER
Is TSH the only thing being tested?  What about Free T3 and Free T4?  If those aren't being tested, they need to be... TSH can fluctuate by as much as 75% over the course of a day, so dosing medication based on that, alone, is like shooting in the dark.

Tirosint is like all T4 meds... it takes 4-6 weeks for a dosage change to take effect and 25 mcg is a pretty small dosage.  Your symptoms of mood swings, brain fog and depression, along with the hair loss are all those of hypothyroidism, regardless of what your TSH is.  That's why Free T3 and Free T4 are so important -- they ae the actual thyroid hormones, while TSH is a pituitary hormone.

If you have results for Free T3 and Free T4, please post them and be sure to include reference ranges, as those vary lab to lab and have to come from your own report. That will shed some light on your situation.
Helpful - 0
Avatar universal
Hi Barb! I'm hoping you can shed some light on my situation. I was diagnosed with Hashimoto's in December 2014 (TSH .016) after the birth of my daughter in July. Before I was diagnosed I went through a MAJOR hair loss, losing a significant amount of hair and I developed a bald spot on the top of my head. I started Synthroid 25mcg in January and my hair slowly grew back and my hair loss subsided. However, I felt lousy on Synthroid so I switched to 15mg of Armor and stayed on that for 6 weeks and my hair loss returned (TSH 1.10). I am trying 25mcg of Tirosent now and it's been 2.5 weeks (TSH .86) and feeling pretty good. Having some mood swings, fog, and depression but hoping that subsides. The problem is my hair is STILL falling out and the speed is picking up and my bald spot is returning. It's getting really bad. From what I've read it's prob a dosing issue. I have to get labs done this week to see what's going on. I can supply you with any labs and or suggestions. Also, my weight started dropping on Armour and I'm stable at 115. Prior to that on synthroid I couldn't budge from 120.
Helpful - 0
649848 tn?1534633700
COMMUNITY LEADER
What are the reference ranges for the FT3 and FT4?  Ranges vary lab to lab and have to come from your own lab reports.  

Is the May 2015, the latest lab you have?  

TSH is affected by a number of variables and should never be the sole basis for dosing/adjusting medication.
Helpful - 0
Avatar universal
They have tested those in the past.

April 4, 2015 Free T4 was 1.64 and Free T3 was 4.4 while my TSH was .23.

In May 22, 2015 my TSH was 1.33.  

February 4, 2015 Free T4 was 1.23 Free T3 was 3.5 and TSH was 2.39

I have gone through a few doctors at this point because so many won't listen. This one  has been the best so far at listening.
Helpful - 0
649848 tn?1534633700
COMMUNITY LEADER
If your doctor is dosing your medications based only on TSH, you'll never get well.  Is that the only test you're ever having done?  You should be getting Free T3 and Free T4 every time you have a TSH test done.  Those are the actual thyroid hormones and are much more important than TSH.

Aside from that, your doctor should know that it's customary to keep TSH suppressed after one has had thyroid cancer...

You need a different doctor; this one will keep you very ill for a long time.
Helpful - 0
Have an Answer?

You are reading content posted in the Thyroid Disorders Community

Top Thyroid Answerers
649848 tn?1534633700
FL
Avatar universal
MI
1756321 tn?1547095325
Queensland, Australia
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
We tapped the CDC for information on what you need to know about radiation exposure
Endocrinologist Mark Lupo, MD, answers 10 questions about thyroid disorders and how to treat them
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.