Tirosint, what are you doing to me?

[librarygirl2]

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

[Ambeliever]

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.

[Barb135]

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.

[Ambeliever]

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 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. 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.

[Barb135]

Yes, there is a normal period of adjustment, and yes, try to push through with minor symptoms.

Oddly enough, many hyper symptoms also apply to hypo.  When I was at my very most hypo, I had heart palps, anxiety and shortness of breath. Once my thyroid levels normalized (for me), those symptoms went away.

AND, Hashimoto's is often characterized by periods of hyper in the beginning stages, so your symptoms could have been either one.  The most telling symptoms for hyper are rapid weight loss, for no reason and diarrhea.  Most telling symptoms for hypo are weight gain, constipation and dry skin, but many people who are hypo don't gain weight; many hyper don't lose weight.  

[Ambeliever]

Regarding your last post, it sounds like it is a normal period of adjustment for some? Should I have minor symptoms - I assume that I should push forward with the Tirosint and wait to stabilize a bit? My Endo did say to call her immediately if I experience any moderate to severe side effects. She is starting me on the 12 mcg since its the lowest and due to my history of heart palpitations, anxiety attacks, and shortness of breath. I thought for the longest that I was hyper, not hypo, due to my symptoms.

[Barb135]

As always you should be aware of the symptoms of over medication and contact your doctor immediately.

It's not unusual for hypo symptoms to worsen or for new ones to appear when starting on a new med.