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Tirosint - Question

Hi All,

I've been on levothyroxine consistently for about 4 weeks now (after 4 years of being undermedicated and 1 year of my PCP and I moving around the dosage).  Initially my new Doc started me out on tirosint and within two weeks I noticed skin peeling on my leg and a burning sensation in my stomach.  Other than those two issues I felt fine.  Has any one experienced these reactions on Tirsosint?  I'm wondering if these issues were due to the fact that I'd been spending a lot of time in the sun and, after carefully research,  due to the fact that my dose was never correct under my GP that i'd begun to have problems with my esophogus and indigestion (I will say that since i'm back on levothyroxine my stomach pains have decreased considerably.  I'd like to try Tirosint again.  Doctor started me on 50 mg and i'm currently back on levo1thyroxine at 75 mg but can tell in the two weeks that I've been back on that I'm sliding back towards hypo (feeling cold all the time and temps have been in the 90s), tired, and week.   Any advice given would be much aprreciated
7 Responses
649848 tn?1534633700
COMMUNITY LEADER
What are your actual thyroid hormone levels?  Please post TSH, Free T3 and Free T4 levels with reference ranges, so we can see where you're at.  

Tirosint is, basically, hypoallergenic, since the only ingredients are levothyroxine, which is the active ingredient, water, gelatin and glycerin.  It's not unusual for symptoms to worsen or for new ones to appear, before improving, when changing medications or dosages

Dry skin and indigestion/acid reflux are symptoms of hypothyroidism, as are your other symptoms.

Do you know if you have Hashimoto's?  If so, dosage, typically, must be adjusted periodically to keep up destruction of thyroid function.  
Avatar universal
Hi Barb,

My story's a bit of a mess right now so I will keep it brief.  My PCP mismanaged my thyroid condition over the past 4 years.  She kept my TSH in range and she kept it at a 3.  New I wasn't feeling well during that time but she kept thinking things were okay since I was in range (0 - 5.5).  Last year all of the  other hypo symptoms started- high triglycerides, blood sugar creeping up, etc and the most disturbing to her was the uncontrolled blood pressure.  For some reason she thought the bp was related to the thyroid medication and in May took me off for a month - I wound up in the hospital on June 7th and that's when I discovered my TSH has gone up to 8.2 Immediately refered to an endo who started me on the Tirosint.  He thought it odd to that my skin would peel because he said Tirosint had no allergens.  
I did have all my labs run in March 2015 (by another Doctor because at that time I knew that I had to live my PCP because something was really wrong) and here they are:
TSH 3.14 (range 4.5 - 4.5)
FT4 1.38 (.82 - 1.77)
Reverse FT3 18.5 (9.2 - 24.1)
Free T3 2.8 (2.0 - 4.4)
Ferritin 116 (15 -150)
B12  428 (low) Taking 500 mg spray daily
Vitamin D 23.1 (low)  taking 5000 D3 Daily
No Antibodies (not Hashimoto's - just, as he says, "straight hypothyroid)

My current endocrinologist wants to get my TSH under 1.5 to see how I feel - and then take a look at my full thyroid panel - the concern is that since I've never been treated "therapuetically" we really don't know what the true numbers are - what are your thoughts about his approach?

I begged to go back on generic levothyroxine but am now thinking that was not the correct move I can tell my hypo symptoms are back - cold feet, cold hands, ear congestion, brain fogginess, extreme fatigue and muscle weakness in my legs, and fatigue.  I am pretty sure we need to increase from 75 mg because that's what I've been on the last 4 years and my level has never gone below a three.  My family says they saw I marked improvement in me while on Tirosint and I felt it too - vision improved, energy level improved the only weird thing was the insomnia but it was only two weeks on and I would've like to have tried to stay on longer.


649848 tn?1534633700
COMMUNITY LEADER
Wow, your doctor really did mismanage your condition, didn't she?  What sent you to the hospital in June? The blood pressure or just feeling horrible?

Were those labs done when you were on the 75 mcg of levothyroxine? Your FT4 was at 59% of its range, while your FT3 was only at 33% of its range.  Most of us find that we feel best with FT4 at about mid range and FT3 in the upper half to upper third of its range.  Your FT4 was higher than recommended and your FT3 lagging behind, which indicates that you're not converting adequately or converting too much to rT3.  

The problem I have with your endo's strategy is that he's trying to get TSH to a certain point before ordering the full thyroid panel and you've already seen from your experience with your previous doctor that treating by TSH levels doesn't work...

Any doctor who tries to keep TSH at a certain level will keep you ill because TSH is a pituitary hormone, not a thyroid hormone and TSH fluctuates as much as 75% over the course of a day so trying to stabilize is like shooting a moving target.  When on a therapeutic dose of thyroid meds, TSH is often very low or even suppressed... my own TSH has been at < 0.01 - 0.01 for the past 7 yrs and I've never been hyper once.  You'll never get to a therapeutic dose if they don't stop trying to get to a certain TSH, because there "is" no optimal TSH...

You need Free T4 and Free T3 done every time you have blood work and medications should be adjusted according to those levels, along with your symptoms.

I also don't like the idea of not doing the antibody tests... "something" is causing your hypothyroidism, and while the treatment won't change, it's good to know if you have Hashimoto's because as I noted above, your med dosage will have to be adjusted periodically to make up for the diminished thyroid function and also because Hashimoto's is an autoimmune condition and once you have an autoimmune condition, the chances of getting another are greater.

In my opinion, a much better approach would be to run a current full thyroid panel, that includes Free T3 and Free T4 and dose according the FT3 and FT4, "not" the TSH... Based on the labs you posted, I would have decreased your levo and added a small dose of T3, such as cytomel or liothyronine, which is its generic counterpart.

Your endo is right about the Tirosint... as I noted, it's basically hypoallergenic, so I doubt that's what caused your skin to peel off, though anything is possible.
Avatar universal
Thanks Barb.  What sent me to the hospital was the fact that I was walking i the park and then collapsed (for me a high TSH level causes my equilibrium to be off -since I've been back on levothyroxine it's much better and is actually almost totally gone but now i'm feeling a bit woozey again which I am pretty sure is from going back to the generic levothyroxin).  I have learned from this experience to listen to my inner voice.  I'm actually switching to another Endocrinologist as I feel my current one, who was very helpful, was not approaching this correctly so I'm glad I decided to make a switch.  The one I am switching to is open to prescribing NDT, T3, etc - as he says anything to get his patients to where they are feeling well (he was nice enough to provide a meet and greet prior to my schedulin my first appointment to see if I wanted to work with him ) .  I will make sure he runs a full thyroid panel especially the Free T4 & 3s.  Oh and I'm sorry if I wasn't clear - the other Doctor did run the antibodies test and it was Zero - that's when he told me that I didn't have Hashimotos - just a slow thyroid :-\...and, as they like to say. "Easily Treated"
649848 tn?1534633700
COMMUNITY LEADER
I'm glad to hear that you're changing endos again and that you found one that would consult with you prior to making an appointment.  Many of them won't do that; you have to schedule an appointment that's often several months away, then when it finally rolls around, you find that s/he's not the right doctor after all... It's also good that your new one is willing to prescribe, both desiccated and T3 meds.  Do make sure Free T3 and Free T4 are tested every time... those are what actually cause/alleviate your symptoms, not TSH.

There are 2 antibody tests to diagnose Hashimoto's; did you have both of them?  One is Thyroid Peroxidase Antibodies (TPOab) and the other is Thyroglobulin Antibodies (TgAb).  If you didn't have them both, you could have been misdiagnosed, because some of us have one or the other, some have both.  I've also read that some people have been diagnosed with Hashimoto's on the basis of a thyroid ultrasound, even without antibodies, though I've always had a hard time understanding that one.

"Easily Treated"... yeah, but only if the doctor knows what s/he's doing... LOL  
Avatar universal
Hi Barb,

Just came back from my ob/gyn to pick up paper work for my appointment on Friday and I'm glad you asked.  Isn't it weird that my ob/gyn would run a full thyroid panel but not my primary care physician?   He did test both and TPO was 10 (range being 0 -34) and Thyroglobulin as less than 1.0 (range being 0.0 - .9).  A close friend keeps suggesting a visit to a naturopath to find out what's causing my hypothyroidism also - something I most definitely will check in once I'm feeling better (though he seems to think it's my diet and encourages me constantly to get off the gluten!)

I really enjoy this forum and Barb you are so gracious, smart and knowledgable.  Thanks so much for your williingness to always help and I'm so glad that you didn't leave once you felt great!  We really need more people like you to provide instruction and encouragement as we go through this journey.

When I was first diagnosed I didn't take this situation as seriously as I should have so I'm trying not to totally blame my PCP for this mix up.  I do believe she doesn't have a mean bone in her body, she just really didn't realize that keeping patients in range doesn't equal them feeling well...though I do have three other friends who let their PCP manage their condition and I am kindly suggesting that they look elsewhere too.

649848 tn?1534633700
COMMUNITY LEADER
Well, your antibody tests are certainly negative, which would indicate that you don't have Hashimoto's, but then I sometimes wonder about that, as well, because antibody counts "do" fluctuate and Hashimoto's is the most common cause of hypothyroidism in the developed world.  There really isn't such a thing as "just a slow thyroid"... something causes it to be slow.

An ultrasound can show certain characteristics of Hashimoto's also.

It's really not "critical" to find out what's causing your hypothyroidism because your treatment isn't going to change anyway; you're still going to have to take the med, etc.

I'm not sure why your friend is encouraging you to get off gluten.  Gluten doesn't cause Hashimoto's and if he thinks going gluten free will help your thyroid and you do it for that reason, you'll be disappointed.  There may be other reasons to cut back on products that contain gluten, such as bread or processed foods that contain white flour, rice, etc.

Thank you for your kind words... There were and still are some very knowledgeable people here who helped me get through the worst of journey... It's not that I feel "great" these days, but I feel "good" and if I'm happy if I can help someone else get over the rough spots.

A lot of us have had that first (second, third or tenth) doctor who kept us ill much longer than we have been... it's not that any of them were mean or really meant harm.  It's more about what they're taught about thyroid care in med school and what the American Thyroid Association (ATA) and AACE recommend for the standard of care for thyroid patients.  The standard of care says that TSH is the best, most reliable and only necessary test to do and that Synthroid is the best and only necessary medication to prescribe.  Furthermore, I'm totally convinced that the "chapter" on thyroid only takes an hour to get through because that's all they learn or maybe they don't even really discuss thyroid in med school; maybe they're simply given a copy of the ATA/AACE guidelines on thyroid care and that's their thyroid chapter...

You're kinder than I am... I do blame my pcp for having kept me so ill for longer than necessary, even though I realize now that he was only doing what he was taught... He also took an oath to do no harm and he certainly was doing me harm, by not listening to me and not treating me in a manner that was to my benefit.

When I was finally diagnosed with Hashimoto's and referred to my endo by an ENT, the ENT tried to defend my pcp, by saying "he thought he was doing the right thing"; my response was "if he doesn't know how to treat thyroid, he shouldn't be trying to treat it"... The ENT had no response, other than a semi-nod of his head.

There are many pcp's that are good thyroid doctors, the ones to watch out for are the ones who rely on TSH or who think that anything "in range" is okay, order outdated tests, such as TSH w/reflex and a few others we see now and then, etc.
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