# Question about Tirosint



## I DClaire (Jul 31, 2011)

Three years ago this month I had my thyroid (found during surgery to have a 1 mm cancer) removed. I don't remember feeling like myself more than a few days since in spite of being prescribed 3 different thyroid replacements, Synthroid, Armour, back to Synthroid and now Tirosent. I've always told my endocrinologist one fact - I simply have not felt like myself, I have not felt whole and I have not honestly had any real sense of energy or stamina. I've felt like I was there. I could function but I felt empty - UNTIL a little over a month ago when I began taking Tirosent and was also given a prescription for Cytomel which has not been filled.

I had been taking 125 mcg Synthroid and my doctor gave me 125 mcg Tirosent. She gave me two samples (112 mcg and 13 mcg) because she was out of the 125 mcg. She told me to take both to equal 125 mcg.

Initially, I felt better than I'd felt in so long! At first, I'd say for 10-14 days, my blood pressure and pulse were perfect, the best numbers I'd had in years and consistently so. My mood was happy, focused, and I was enjoying being busy. I did things I hadn't done in ages - clean my house, entertain a little bit, go shopping with friends, etc.

Then, with me there is always "then", symptoms of being over-medicated almost consumed me. #1 was profuse sweating. I'd spend hours in the bathroom at night with my face buried in a wet washcloth, too sweaty to lie down in bed. These weren't hot "flashes", they went on for hours on end. I started feeling horrible anxiety. My general mental state seemed to stay the same as far as concentration and memory but every day I was more jittery, more nervous. I couldn't sleep. I lost my appetite. Worst of all, my blood pressure and pulse became and have stayed elevated.

I called my endocrinologist and explained to her PA who told me to drop the 13 mcg Tirosent and only take 112 mcg. I did this but the improvement was short lived, I soon resumed the exact same symptoms/side effects.

Then, on my own, (because there is no way for me to get extra appointments with my endocrinologist), I started dropping Tirosent all together one day of the week as I'd done with Synthroid. Again, this made a momentary improvement but the symptoms are almost identical to what they were to start with, the one that worries me the most is my blood pressure and heart rate.

In my heart of hearts, I feel like Tirosent could possibly be the best replacement drug for me BUT I'm wondering if I'm simply and woefully over-medicated? I've read online that patients should start Tirosent at approximately half of whatever they were taking with Synthroid but I don't know if that's true or not.

This coming week I'd supposed to have thyroid labs AND a blood test for cortisol (?). I don't feel like the thyroid labs will have any accuracy whatsoever the way I'm having to keep backing off with the Tirosent. My blood pressure was so high last night that I was afraid to take it this morning and my heart had pounded so hard my chest aches. I'm going to try my best to at least talk to the PA on Monday but I'm curious to know if others who take Tirosent think it is stronger than other replacement drugs they may have taken?

I tested positive for one bad gene on the MTHFR test - one of the first conditions associated with my gene is "intolerance to drugs". My endocrinologist and I both agree that my body absolutely does not process most drugs normally - they either go straight through my system too quickly OR begin to store but apparently store with no particular consistent pattern. I've had two biopsies on my pancreas and know that it is somewhat malformed but there was no cancer.

This is a lot to wade through to find my question but is it possible someone could function quite well with much, much less Tirosent? It sounds silly but I like this product except for the side effects and I'm all but convinced the side effects are from being over medicated since every little change to lower the dosage helps, if only for a day or so.

THANKS!

Ann


----------



## jenny v (May 6, 2012)

Yuck, what a pain! Two questions: 1) have you ever had a reverse T3 test done?, and 2) have you ever done a 24 hour saliva test for cortisol? I'm wondering if your adrenal glands are exhausted given all of the medical issues over the years and causing you to pool T3 (meaning that it's not getting into your cells, it's just building up in your bloodstream). You might also check your ferritin levels, too.


----------



## Lovlkn (Dec 20, 2009)

Ann,

The ride up( to being hyper) has always been a GOOD ride for me - it's amazing how well one feels - until the hyper symptoms kick in.

Since you are having anxiety and sweating - why not let your doctor know that you are stopping for 2 days - then resume at the lower dose 112 mcg and alternate days taking it, until you can tolerate it. I agree that labs with changing doses is a waste of $$, however, it would at least give you an idea of where your levels are for the next adjustment.

I had a horrible time adjusting to Cytomel in the beginning - no matter what I did it made me feel anxious. It was so bad , I gave up trying for 3 years. It was several years post op 4.5 years to be exact - before I finally got onto a dose that I have been able to stay at and even then I tend to go hyper sometimes and hypo sometimes.

Our bodies take what they need - dialing in the dose isn't easy for all of us, you have had an especially hard time.

Hopefully this issue is as simple as a dose reduction. I know you need a break! hugs3


----------



## I DClaire (Jul 31, 2011)

jenny v said:


> Yuck, what a pain! Two questions: 1) have you ever had a reverse T3 test done?, and 2) have you ever done a 24 hour saliva test for cortisol? I'm wondering if your adrenal glands are exhausted given all of the medical issues over the years and causing you to pool T3 (meaning that it's not getting into your cells, it's just building up in your bloodstream). You might also check your ferritin levels, too.
> 
> Jenny, I honestly don't know if I've ever had a reverse T3 but I'm going to ask on Monday. I have all but begged for the 24-hour saliva test and my endocrinologist says she does not consider it a reputable test...while everything I've read supports the saliva test over any blood test. Ferritin has been checked, it's O.K.
> 
> To tell you the truth, I stay so caught-up in caring for my mother these days that I all but live in a daze. At 93, she is so pitifully frail and hardly a day goes by without a crisis. People tell me I appear well and seem to have everything well under control but anything but that is true, I feel like I'm hanging on by my fingernails!


----------



## I DClaire (Jul 31, 2011)

Lovlkn,

I guess I've felt much the same way - I was feeling unstoppable until I suddenly felt like I ran into a brick wall! I'll never forget a comment a doctor made to me when I was initially diagnosed as hyperthyroid. She said most women like being slightly hyperthyroid. I am not one of them and I know my body well enough to know the minute I hit that point.

I haven't even filled the prescription for Cytomel. Lord have mercy! I don't think my confusing conglomeration of goofy symptoms could endure another variable.

I honestly, maybe my woman's intuition, believe Tirosent might be good for me BUT it's going to take some fine tuning of the dosage and that's tough when I have to wait so miserably long for appointments. I used to see this doctor every month or so - now I (and I guess everyone else) has to wait so terribly long...not to mention I know there is a waiting list of people trying to see her. I don't know what's going on in other parts of the country as far as healthcare but things are pitiful here. The main hospital here has totally closed, dozens of doctors have retired, doctors are dropping Medicare patients they've seen for years and not taking ANY new Medicare patients. We used to have one of the best no cost public hospitals in the country with the #1 trauma center in the South and that closed as far as being operated by the state. It has been taken over by private investors but is not doing well at all. I don't know really what's going to happen here - we're mostly trying to make do with little quick care type clinics, praying we don't have anything life threatening to deal with.

It's hard to manage getting dosages or even prescriptions right when you can only get labs occasionally and virtually cannot see your own doctor. If it were not for the fact that the tiny cancer I had qualified me for five years of care with this endocrinologist, I wouldn't even get to see her. When I do see her, there are so many details, so many questions and so little time.


----------



## Andros (Aug 26, 2009)

I can't believe one of our favorite ladies is here.

Your thyroid may be growing back. This is possible if a tiny bit of tissue is left behind. Talk to your doc about this. RAIU would rule that in or rule it out.

Or.........................there could be thyroid tissue somewhere else in your body.

Just one thought pattern of many!

Hugs, Lu Anne


----------



## jenny v (May 6, 2012)

> I have all but begged for the 24-hour saliva test and my endocrinologist says she does not consider it a reputable test...while everything I've read supports the saliva test over any blood test.


You can actually order them online and do it yourself (I did because my doctor was stuck on blood cortisol, which showed nothing). After years of Synthroid and Hashi's, my adrenals are shot and not able to keep up anymore during the day or night. I can't go up any more on my Armour (I'm on 135mg) because I go crazy hyper and my reverse T3 gets high and I feel miserable.

I'm following Stop the Thyroid Madness's program of adrenal cortex to see if that works (if it doesn't, I'll have to go on steroids for a while, which I'm trying to avoid). Because of my low cortisol, I had problems going up with my Armour due to high reverse T3. The idea is that once I get my cortisol level correct, my reverse T3 should clear out and I can go up on my Armour (or stay where I am if that continues to work).


----------



## I DClaire (Jul 31, 2011)

:ashamed0002:Hey Andros,

Thank you! When I think back to being here even before my surgery and thinking (because I was told by my doctor) how much easier my life would be without my crazy thyroid and what all has transpired since, I can honestly say there have been times when you guys were all that kept me going! I guess it was pure coincidence but it does seem like my so-called life flipped upside down the day I had surgery - beginning with thinking I'd be hospitalized overnight and having to stay a week having blood drawn every few hours. Sometimes I look back and truly wonder how I've done as well as I have! 

I've recently (6 weeks ago) had the thyroglobulin tumor marker and ultrasound but something rather odd has happened - my incision, which was never a problem at all, has become rather red.

The #1 (and only, for that matter) plus I've been enjoying with Tirosent is the feeling of being whole - mentally, emotionally and physically. I've fussed and fumed for almost three years that I just simply could not feel like myself and I do with Tirosent. It's nothing dramatic but it's there, as though I wandered in from feeling so empty and I don't want to lose the feeling.

I'm going to ask the PA tomorrow if they'd prefer I go on with the labs since I've been having to really almost take the Tirosent on such a wacky schedule OR maybe they'd let me try a much lower dose for a few weeks and then have the tests. I don't know what the results will prove right now other than I just can't endure 125 mcg Tirosent...much less Cytomel! Me, the one who once thought more hormone replacement equaled more energy, now begging for much less!


----------



## Lovlkn (Dec 20, 2009)

> I've recently (6 weeks ago) had the thyroglobulin tumor marker and ultrasound but something rather odd has happened - my incision, which was never a problem at all, has become rather red.


If it's hot - you should go to the doctor to make sure there is no sort of infection.

Strange that over time it has become red, especially this far beyond the initial incision.


----------



## I DClaire (Jul 31, 2011)

I do not know what on earth to do or even what to think! I've had the tests, everything except my thyroid results were normal. I don't know my exact results BUT they must be awfully, awfully low on 112 mcg Tirosent. My endocrinologist has sent word twice (by the PA) that I must increase my dosage to 125 mcg. I don't think I can tolerate that and I think I made her angry by saying so.

At 125 mcg, I cannot stop sweating! I feel like I'm on the verge of an anxiety attack much of the time and my beautiful blood pressure/heart rate numbers become elevated. I think I can live with 112 mcg but only if I skip at least one day a week and would feel better skipping two doses a week.

For three years, I've ordinarily had relatively good lab results but felt horrible...now I feel better but have horrible lab results!

I am nearly crazy worrying about so many things right now and the worst came on September 16. Our pug, Jimbo, was diagnosed with liver disease on his 14th birthday. We almost lost him last week but he has rallied beyond our wildest hopes but I'm still worried to death for him. I can deal with just about anything better than a sick pet, particularly something this life threatening.

I don't know what to do about the Tirosent though. I don't have a prescription for the 112 mcg (I've been taking two sample packages) and I don't think my doctor is going to give me a 112 mcg prescription. I have 125 mcg but it's too much for me and I know it is.


----------



## Octavia (Aug 1, 2011)

hhhhmmmm...this sure doesn't sound right, Ann. Any chance you can get a copy of your recent labs? Something tells me you should trust your intuition on this.

I'm sorry to hear about Jimbo being sick. Sending a pug hug your way...


----------



## rachelsstuff (Jan 7, 2016)

Wow! I googled mthfr and tirosint and luckily happened upon this thread. I have been on Synthroid for two years and finally switched to Tirosint (because I'm lactose intolerant and have pollen allergies). I was hoping Tirosint would help me feel better but I began having really achey arms and insomnia, heart palpitations, anxiety, sweating, etc, etc. I did some research too and found that maybe I'm overmedicated. I was on Synthroid 112 mcg and the endo put me on 112 Tirosint. I go to the endo today to see what my labs say. Also, I was tested for MTHFR since two of my daughters are positive so I'll see what the results of that are today. I cannot wait. I stopped cold turkey two days ago on my Tirosint just because I felt I could not take it another day (and I NEVER go against doctor's orders) but that's how awful I feel. Hopefully my endo has some answers for me because I cannot live this way.

Anyway&#8230;.. HOW ARE YOU FEELING NOW IDCLAIRE?


----------

