Thyroid Disorders Community
Tirosint, what are you doing to me?
About This Community:

This patient support community is for discussions relating to thyroid issues, goiter, Graves disease, Hashimoto's Thyroiditis, Human Growth Hormone (HGH), hyperthyroid, hypothyroid, metabolism, parathyroid, pituitary gland, thyroiditis, and thyroid Stimulating Hormone (TSH).

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank
206 Comments Post a Comment
Viewing 201-208 comments:
Blank
Avatar_f_tn
Well, there you have it! This makes complete sense to me. Last Spring I experience a major anxiety attack. On April 5th to be exact. Diarreah (diarrhea) became a daily occurrence and for whatever reason I had an absolute aversion to food. Made me sick to eat. I would get dizzy and have intense heart palpitations. I lost 15 lbs in one month. Anxiety attacks would wake me from sleep at least 3 nights a week. During waking hours I compared my constant adreneline surge to holding the accelerator pedal down in the car about 2/3 of the way and holding it there. Went to my doctor (of 7 years) and he prescribed Xanax. Told him I am not a nervous, depressed or anxious person, normally. I insisted there was a medical reason for my issues. Found a new doctor and he prescribed....Xanax. I refused to take daily but did agree to fill the prescription for use ONLY at the onset of major anxiety attacks. He gave me the lowest dose and told me to cut it in half. Did have to use those 4 times, but not since July. I admit, they were very useful for me in those situations. He did only routine blood work and the only thing that stood out was my EOS level, which I'm told is a marker for allergies. He did not send me to an allergist because the blood test he ran next showed no allergies. My EOS is still sky high and I take a Zyrtec every day. I'm a mess without it. It wasn't until I found my Nutritionist that we dug further. She asked him to test B12 and D. Also sent me to the Endo for the first time due to the thyroid nodules we could feel and see. First doc said they are of no concern and very common. We have tested everything under the sun - except for Iron testing, ferritin and the like. My blood cell count is normal so doc has absolutely refused to check further. I think I will ask again. It's been almost a year now and over $10,000 in expenses which included 1 trip to the ER because I thought I was having a heart attack or something. All that said, I believe those were my Hyper days. Since then I put the weight back on, plus 10 lbs. (Hypo Phase) No energy, no libido, very dry skin, and still this nagging shortness of breath with "the sighs". I hope that the Tirosint will help. I do take supplements through my Nutritionist and they have truly helped, but there is still a piece missing and I'm just sick and tired of feeling sick and tired. So that's my complete background, for you in case something stands out, but also for anyone else reading that is experiencing similar symtoms (symptoms). Maybe something here will help them. Thanks so much, Barb! You are a real blessing and honestly, I'm giggling here a bit, but you have done a better job explaining thyroid issues on this forum than my either my doctor or Endo.
Blank
649848_tn?1424570775
Well, there you  have it.... LOL    I can explain it well, because I've been there, done that.... Your story sounds a lot like mine and I went through the same things with doctors... Tired, no energy, etc -- aw heck, "your just depressed".... Yes, I was, but I wasn't tired because I was depressed, I was depressed because I was so tired and nobody would help me.

The majority of my tiredness was from Pernicious Anemia, but my doctors would never test B-12 levels and when they did, even if my levels were really low in the range (like rock bottom), they said I was "fine"... I wish they would have had to  live in this body and feel the way I felt.  It wasn't until I started having neuropathy in my feet/hands that my doctor finally took another look at B-12 levels and said "by golly, we've found the problem".  Yep, the problem he'd "missed" or ignored for the previous 5-7 yrs.  He thought starting on B-12 shots would solve all my problems, but when I started putting on weight like there was no tomorrow, I finally got them to run thyroid tests, again... By then, I was so hypo; my TSH was at 55+ and it was obvious that I was sick - they couldn't ignore it anymore or attribute  my tiredness to depression... Once diagnosed I'd thought I'd be on the road to recovery, but nope, not so fast, Bucko...

I can SO identify with that adrenaline surge, but I had it after I was dx'd hypo/Hashi... so you see what I mean when I say symptoms can "cross over".

The time following my dx of hypo is a whole other story, but was a nightmare that I wouldn't wish on anyone.  

I hope you have a lot better thyroid doctor than I had to start with; you'll get better a lot quicker.
Blank
Avatar_f_tn
Wow! I cannot even imagine how bad you must have felt to go undiagnosed for so long. I had the first anxiety attack in Nov 2011. But they were so far in between and I had no clue as to what was causing them. There were no other symptoms and I would recover the next day.

I have only endured daily problems since April, and that's too long for me. I don't have that kind of strength. I have read about others, like you, who were sick for nearly a decade or longer. It's a shame. A shame that mainstream doctors are not educated beyond writing out a prescription.

My husband has done his best to understand, but he tires of me feeling bad. He thinks I spend too much time (and money) trying to figure this out. It's been really hard on my kids too (which deeply saddens me). They are only 9 and 17.  But I know that YOU KNOW that we have to be our own advocate. If not, we will not get the help we need. Life is too short as it is.

As for my Endo, unfortunately I do not have a lot of faith in her. She did the FNA on my nodules in May 2013 along with blood work. Her nurse called me two weeks later to let me know that the nodules were benign and they would see me in 6 months. I was elated to get the good news and pressed forward looking for answers for my condition. Tons of doctors appointments and countless hours of studying followed. When I returned to the Endo for my 6 month check up in November she said....oh, I see you have Hashimoto's. She was looking at the report from May and showed it to me. She said I would need medication for my thyroid. The whole time I was sitting there I was thinking, May?! You've been sitting on this information since May?! It has been my lack of confidence in her that has caused me to delay in starting the Tirosint. I was waiting on new lab work to come in and searching for advice when I found you. I am not one to just say ok and put the pills in my mouth. Wish me luck! :)

I feel much better now about trying the medication. So, thank you again! And thank you for taking your time to share with us. I'm so sorry for what you've endured to get to this place. Your presence here will surely save many others from years of poor health due to lack of information and guidance.
Blank
Avatar_n_tn
Hi:
I'm a 60 year old female. Had my thyroid removed 3 months ago due to complications from hashimoto's. Surgery was flawless, but I've been hospitalized twice since due to extreme side effects from taking meds. My tsh in January was 98. They've gotten it down to 42, labs to be drawn again in 1 week.  Extreme muscle pain and headaches from all meds. (including compounded & NDT) they tried me on. Currently on Tirosint, 100 mcg. (50 mcg. twice daily). Pain is horrific in calves & upper arms. Doctor said its a lupoid reaction to the med. & added prednisone in an attempt to get the lupus to settle down. My question is, can the pain be coming from the medication, or is it indeed a lupus flare? They don't know what else to prescribe for me. Thank you.
Blank
649848_tn?1424570775
Perhaps they simply started you on too high a dosage.  Often it's best to start very low, especially, those over 50, and work up slowly as the patient can tolerate it.

What symptoms are you getting as "side effects" from the medication?  Just the muscle pain and headaches?  It takes 4-6 weeks for any thyroid med, containing T4, to reach full potential in the blood and it's not unusual to feel worse or have new symptoms appear, while adjusting to a dose/med.

There is no point in taking Tirosint 2 X/day.  It's a T4 med and has to build.  The T4 in your system today, is from med you took a couple of weeks ago.  The only thyroid meds that should be taken in multiple doses are those containing a T3 component, which Tirosint does not.

There is nothing in Tirosint to react to.  The only ingredients are the levothyroxine, water, glycerin and gelatin.  I feel confident that the pain is not being caused by the Tirosint; it "could", however, be caused by hypothyroidism.  With a TSH of 42, I'd expect your actual thyroid hormone levels to be quite low.

If you have current lab results, please post them, so we can get a better idea of where you're at.  If your doctor is dosing you, based only on TSH, ask for the Free T3 and Free T4 tests.  If s/he refuses to test those, get a different doctor.  

Since this is a very old, long thread, your situation would get more attention if you posted a new thread, with your own information.  You can do that by clicking the orange "Post a Question" button at the top of this page, and once you've typed your comments/questions, click the green "Post a Comment" button.

There are some ways this can be handled, but I'd need to know your current FT3/FT4 levels.  I'd also wonder if they've checked your vitamin D level.
Blank
Avatar_f_tn
I just began tirosint 3 days ago.  My thyroid has always been slightly enlarged and at my endo appintment they found "masses" that they believe are enlarged para-thyroids.  My endo put me on 25mcg of tirosint (I was on 100mcg Levothyroxine) and gave me a script for bloodwork in 5 weeks to reevalute.  Well 3 days in my thyroid is larger. My endo seems dismissive.  What do I need to know?! I need to ask the right questions.

When I first described my symptoms:
sleepiness
anxiety
leg & foot pain
trouble concentrating
memory problems


He told me that NONE of these have anything to do with my thyroid.  Once he did the sonogram, he changed his opinion.
Blank
Avatar_f_tn
Hi everyone - I never post on these, but was thankful to find all of these posts.  I was feeling fine, but went ahead and had a Physical in Aug 2013.  My doctor said my blood results said my TSH was 4.970, indicating that my thyroid was low. So, he put me on Levothyroxin (levothyroxine) 50 MCG.  Almost immediately I was a trainwreck!  Couldn't sleep and then crash and sleep for over 12 hours, sweats hot and cold, anxious, heart racing, no patience at all and just plain mean!  The doctor wanted me to continue for 3 months, which I did with nothing getting better and feeling the worst I've ever felt in my life!  I had another blood test and the TSH was 1.620, however on Dec 23, I'd had enough and called the doctor and told them so.  They had me come in the day after Xmas and talk to doctor - he gave me the Tirosint 50 MCG to try.  More side effects!! Sleep got a little better, I've been taking it at 5 or 6 am and then try to sleep before work.  I'm having horrible headaches with it, am still more tired than I ever was, the inside of my ears itch - yep inside!! Driving me nuts! Plus, again the anxiousness, heart racing, bitchyness is a little better, but I still have melt downs and crash and energy level just plain ***** :-( I'm an avid tennis player and runner - that just  has no appeal to me these days.  Talked with the nurse about current symptoms and the only advice I got was to take them before bed and sleep through the symptoms - I don't think that is a very good answer!!  Any and all advice is welcome at this point - I'm so tired of messing with this in my life!

KeriBear
Blank
Avatar_f_tn
Hi everyone - I never post on these, but was thankful to find all of these posts.  I was feeling fine, but went ahead and had a Physical in Aug 2013.  My doctor said my blood results said my TSH was 4.970, indicating that my thyroid was low. So, he put me on Levothyroxin (levothyroxine) 50 MCG.  Almost immediately I was a trainwreck!  Couldn't sleep and then crash and sleep for over 12 hours, sweats hot and cold, anxious, heart racing, no patience at all and just plain mean!  The doctor wanted me to continue for 3 months, which I did with nothing getting better and feeling the worst I've ever felt in my life!  I had another blood test and the TSH was 1.620, however on Dec 23, I'd had enough and called the doctor and told them so.  They had me come in the day after Xmas and talk to doctor - he gave me the Tirosint 50 MCG to try.  More side effects!! Sleep got a little better, I've been taking it at 5 or 6 am and then try to sleep before work.  I'm having horrible headaches with it, am still more tired than I ever was, the inside of my ears itch - yep inside!! Driving me nuts! Plus, again the anxiousness, heart racing, bitchyness is a little better, but I still have melt downs and crash and energy level just plain ***** :-( I'm an avid tennis player and runner - that just  has no appeal to me these days.  Talked with the nurse about current symptoms and the only advice I got was to take them before bed and sleep through the symptoms - I don't think that is a very good answer!!  Any and all advice is welcome at this point - I'm so tired of messing with this in my life!

KeriBear
Blank
Avatar_f_tn
I too am glad to have found this site...so that I am sure I am not losing my mind. I am 32 now and had my thyroid removed when I was 21 due to Graves Disease. For 10 years I have been constantly having to adjust my synthroid dosages because my TSH levels are constantly fluctuating. I can't lose weight and have almost every symptom there is. Two weeks ago, my endocrynologist switched me over to Tirosint to try. I went from 200mcg of Synthroid, which was a tad too high, to 150mcg of Tirosint. Since then, I feel like I'm going crazy again - similar to when I first found out I had hyperthyroidism. I can't sleep, my body is achy and I'm getting cramps, I'm irritable, crying for no reason, have clausterphobia issues, and my anxiety is off the chain. My doctor wants me back in 2 months for blood tests to see how it's doing, but I don't think I can make it that long. I feel like I'm going nuts. My heart has palpatations and I feel like I'm in a fog. I agree with the person above that said it's been so long since I've felt normal, that I no longer know what normal is.
Blank
428837_tn?1250010804
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.
Blank
Avatar_m_tn
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.
Blank
649848_tn?1424570775
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.
Blank
Avatar_m_tn
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.
Blank
Avatar_m_tn
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.
Blank
649848_tn?1424570775
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.
Blank
Avatar_m_tn
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. :(
Blank
649848_tn?1424570775
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.
Blank
Avatar_m_tn
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! :)
Blank
Avatar_m_tn
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.
Blank
649848_tn?1424570775
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.
Blank
Avatar_m_tn
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!
Blank
Avatar_f_tn
Just wondering if anybody is still here.  I had my thyroid destroyed with radiation in 1985. (I was 11) I've been on Synthroid or Levothyroxine since then. I've really started having horrible symptoms the last several years, and have had doctors tell me there wasn't any other medicine I could take, tell me that I'm just not taking my medicine like I should, tell me that my counts are off but not enough to change my dosage or cause symptoms. I've been through 5 doctors in the last 3 years trying to get someone to help me.  I finally found one in September that prescribed Tirosint (150mc) and Cytomel.  The first couple of days on it, I felt horrible! I feel better now. I'm losing less hair than I have in a couple of years.  My skin seems to be getting better. I am still tired. I've been tired for almost 30 years. I'm tired of being tired. That seems to only be getting worse.  I don't see my doctor again until after Christmas, so I don't know how the new meds are affecting my blood work.  I was on 175 mc of Levothyroxine.  I'm thinking maybe I need a higher dose of Tirosint, or a lower dose that I can take twice a day? I am also faxing in an exception request to see if I can get this medicine covered under my insurance, because I can't afford to pay for it. ($150/mo) My doctor gave me enough samples to last 2 months, so that's what I've been taking.  I have also been terribly confused the last couple of weeks.  I can't concentrate on anything. at all.
Blank
Avatar_m_tn
There are a lot of knowledgeable and experienced members on this Forum who are more than happy to help.  Please start by posting your last few series of thyroid related test results and reference ranges shown on the lab report.  How much Cytomel are you taking with the 150 mcg of Tirosint?  If tested for Vitamin D, B12 or ferritin, please post those results also.  
Blank
Avatar_f_tn
I have a tsh of 31. Dr has put me on tirosint from synthroid 150. Have been changed for 4 weeks. Nausea, headache, sweats dizzy, sleeplessness and tsh is now 28.6. Should it be lower by now? I don't know how much longer I can take this. Oh and sever abdominal pain that has just started in the last 2days. Help please. I have graves disease. Total thyroid removed in 94.
Blank
649848_tn?1424570775
What are your Free T3 and Free T4 levels?  I hope your doctor isn't just dosing you, based on TSH... Please post FT3 and FT4 results, with reference ranges...
Blank
Avatar_m_tn
I too had my thyroid removed. Regretably, I listened to my Endo.  After 6 years on Synthroid only(125mg most recent)...I just couldnt do it anymore.  I napped at work 3 times a day, recently gained a bunch of weight and didnt change my eating. I actually felt like i was going to pop.  The brain fog was horrific.  At my request my doctor put me on Armour...but he overdosed me on 120 (equal to 200 synthroid).  Then later ended up in ER with 35 heart bpm.  Im still adjusting Armour dose but think i need a T4 combo w/ the armour. My heart hasnt beat right all month.  I dont understand why they didnt give me a little T3 after surgery.  The doctors do seem clueless its exhausting.  Sue
Blank
Avatar_m_tn
I too had my thyroid removed. Regretably, I listened to my Endo.  After 6 years on Synthroid only(125mg most recent)...I just couldnt do it anymore.  I napped at work 3 times a day, recently gained a bunch of weight and didnt change my eating. I actually felt like i was going to pop.  The brain fog was horrific.  At my request my doctor put me on Armour...but he overdosed me on 120 (equal to 200 synthroid).  Then later ended up in ER with 35 heart bpm.  Im still adjusting Armour dose but think i need a T4 combo w/ the armour. My heart hasnt beat right all month.  I dont understand why they didnt give me a little T3 after surgery.  The doctors do seem clueless its exhausting.  Sue
Blank
Avatar_f_tn
When you get your TSH where it needs to be you can have other sypmtoms appear that may be from other causes.  Those causes need to be investigated.  I went on Armour for a time after Synthroid did not work.  Aftfer getting levels adjusted for a few months I went into Nutcracker Esophageal Spasms.  This was hiding under all the low thyroid for years.  I also had been taking years of Statins and the muscle problems showed their ugly heads.  Years later looking back I can see the early symptoms of Celiac or Gluten Intolerance and Statin Intolerance causing those issues.  Have to be careful throwing all your ills in one basket.  Health is like peeling an onion. Work on each layer!
Blank
Avatar_f_tn
Barb, when you state you did not do well on synthroid-what were your symptoms.

Thanks!
Blank
649848_tn?1424570775
Hypo... I just commented on the thread you've had going for a while... I did have a lot of the heart symptoms you noted.  Also, your profile says you're male, but you said some things that indicated otherwise, could you clarify?
Blank
Avatar_f_tn
Just so I understand.  Synthroid did not relief your hypo symptoms - correct?  Hence switching to a different T4.  So it did not help the heart palps etc.  I know that everyone's body reacts to meds in different ways.  Trying to find the right T4.

I will fix my profile...I am female.

Thanks!
Blank
649848_tn?1424570775
Synthroid did not relieve my hypo symptoms, but it wasn't necessarily the fault of the med... my doctor panicked, because my TSH was very low and he refused to go by anything but TSH so he insisted that I was hyper..

I'll also note that I did better on levo than on Synthroid, but by then, I was going to the endo, who was willing to give me higher doses, so I can't say it was specifically the med.  

My other doctor (pcp) was all about Synthroid and very specific that I should NEVER take any T4 med other than Synthroid, whereas my endo said it levo was just as good... I sort of figured my pcp might be married to Abbott Laboratories, who makes Synthroid.
Blank
Avatar_f_tn
I am getting ready to try Tirosint or try to if my doctor will let me. I had my thyroid removed about 3 years ago because of cancer and I have never been adjusted properly. I am on Synthroid .175 mcg and my TSH won't remain stable. I was at .23 after switching to .175 mcg. Then 4 weeks later I was at 1.43 after taking .175 mcg 6 days a week and .150 mcg one day a week.  That is a huge jump.

I am so tired of not being level. Now I am showing signs of going hypo again. I am beyond frustrated and I really hope this will work. I will report back if I get on it and if it works.
Blank
649848_tn?1424570775
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.
Blank
Avatar_f_tn
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.
Blank
649848_tn?1424570775
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.
Blank
Avatar_f_tn
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.
Blank
649848_tn?1424570775
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.
Blank
Avatar_f_tn
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).
Blank
Avatar_f_tn
Hi Barb...wondering what your thoughts are regarding my labs.
Blank
649848_tn?1424570775
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?

Blank
Avatar_f_tn
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.
Blank
Avatar_f_tn
And yes, I have a history of anemia. For most of my adult life.
Blank
649848_tn?1424570775
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...
Blank
Avatar_f_tn
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.
Blank
649848_tn?1424570775
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.
Blank
Avatar_f_tn
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.
Blank
649848_tn?1424570775
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.

Blank
Avatar_m_tn
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.
Blank
Viewing 201-208 comments:
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Thyroid Disorders Community Resources
RSS Expert Activity
233488_tn?1310696703
Blank
Marathon Running Done Over Many Yea...
May 21 by John C Hagan III, MD, FACS, FAAOBlank
233488_tn?1310696703
Blank
New Article on Multifocal IOL vs &q...
May 21 by John C Hagan III, MD, FACS, FAAOBlank
748543_tn?1371753642
Blank
TMJ/TMJ The Connection Between Teet...
Jan 27 by Hamidreza Nassery , DMD, FICOI, FAGDBlank
Top Thyroid Answerers
649848_tn?1424570775
Blank
Barb135
FL
Avatar_m_tn
Blank
gimel
MI
Avatar_f_tn
Blank
goolarra
Sisters, OR
168348_tn?1379360675
Blank
ChitChatNine
1756321_tn?1377771734
Blank
Red_Star
Queensland, Australia
657231_tn?1421251398
Blank
rumpled
Northern, NJ