What Thyroid Meds Do You Take?

[HappyMom623]

Hello! I am not sure if this is quite the correct place to post this, so let me know.

 

I was just diagnosed with Hypo/Hashimoto's last week. The doctor put me on 50mcg of Levothyroxine. I did some research on it online and can't find much. I've found some sites that say there are only two brands that ARE gluten free(Lennet and Mova). Mine is made my Mylan. Old searches said that Mylan said they don't use gluten, but I'm nervous that it won't always be Mylan brand when I pick it up? Because it's a generic, I'm sure it can change at any time with the Pharmacy.

 

I wrote my doctor today to tell him that even after speaking with a pharmacist who couldn't tell me it WAS or WASN'T, that I wanted a new medication. I sent him a list of gluten free thyroid meds I found online. Looks like Tirosint would be a decent one?

 

Anyway, just wondering if you take Levo and it bothers you, or if you take a different medicine?

 

thanks !

[Judy3]

I take Levothyroxine and mine is Mylan and it doesn't bother me at all.    I had my thyroid removed so I don't have a choice have to take it and I have Celiac too. 

[Alwayssomething]

I also take Levothyroxine and mine is Mylan and have not had any trouble.  I called Mylan when I first went on it about 4 years ago and they told me it was Gluten Free, as my pharmacy couldn't tell me.    In the 4 years I have been on this medication I have had it filled at a mail out pharmacy as well as local and it has never come from another manufacturer, not sure if I have just been lucky or what.  

 

My son has to take the name brand Synthroid and he has had no trouble, he can not take the generic because it just doesn't work for him for some reason, so name brand it is.  

[HappyMom623]

Thank you both! Okay, then for now, I am good, I suppose. I haven't had any "effects" from it, but I couldn't find GOOD information anywhere online. I spoke to some other celiac's who said they refused to take it.

 

My doctor has not gotten back to me, but for now i'll feel okay taking it.

[mamaw]

I took one  pill of levothyroxine  & felt  something  wrong.... I developed  angio lympathic edema for  nine  months  from  that  drug....not a pretty picture.. Now  I am  super  sensitive to drugs.... Mylan  does not  guarantee  their  synthyroid  is gluten-free.....

Tirosint  is a newer  drug  that  has  very few  ingredients  so  is less  likely to cause a problem.... My  daughter  is on  it  & after  a month they had  to reduce  her  dosage....she has  Hashi...... no gluten  in this  one.....

I had  my thyroid  removed (RAI)  in  2007... I  produce  my  hormone  from  the gland...  I  love  for the last  three  years Nature-throid  by RLC Labs...they are a  safe  drug producing  what  a  normal  thyroid  produces....  it  is  hard to find a  doc  to  write a  script  for it..  Most  of  the  thyroid  docs  are  owned  by  the  synthroid  drug  & Mylan.....

Mylan has  had  so many lawsuits  in the  past  I do not trust  them .....

 In 07  after  by gland  was  killed off  I was put  on synthyroid  for several years as  time  went  by I became  a space cadet  I couldn't  function & my thought  process  was  that  of a  third  grader....so  grateful to be  off  of  that  drug....

[HappyMom623]

What is "angio lympathic edema" ??

 

That sounds awful!!

 

I get nervous about it. I hope the doc will put me on tirosint, however, I'm trying to get in with a new Endo that's part of an internal medicine practice. I'm wondering if they'd be more willing to prescribe more natural thyroid meds like Armour, and NatureThroid.

[cahill]

I have Hashimotos .I have been on thryoid meds for about the last 20 + years. I have been on name brand Synthroid  since 2002 with no problems .I cannot take the generic ( I bounce around like a rubber ball ) it has to be name brand

[HappyMom623]

So Synthroid doesn't give you any problems? That's good.

 

I'd really prefer to be on something more natural, but most doctors don't want that.

[cyclinglady]

I take Armour thyroid and have for almost 20 years. There was a time that insurance would not pay for it (many years ago) but I paid cash. In fact, I have been paying cash up until last year. It is the same price or close as my co-pay of $15.00. I get a 100 day supply and it is about $25 to $30. If I would order it through insurance, I would have to do it monthly and my out of pocket total for 3 months would be higher -- $45 and I would have to go the pharmacy and remember to re-order it.

I never had a doctor not write a prescription for it.

[mamaw]

I've  heard  the  new  reformed  armour  is  not  the  same as the old  armour...but  I  can't  say for positive as  I never  used  it....

Synthyroid  can not  guarantee  its  gluten-free   now.... years  ago  the 50  mg  was gluten-free  but  they have since  changed  that statement....

 

angio lympathic  edema  is  one  of the most  horrible  things  I  have gone  through...google  it  & look at  the  oddly  deformed  faces  of  that  ... I  spent  nine  months  in my house  , face  so badly  swollen  &  inside  soft  tissue  so  damaged.. sore  & very painful...I was  seen  by  several specialist  in that  field  all  said  I was  one  of the  worse  cases....It  never  goes  away  totally, I  still experience  soft  tissue  damage & sore  mouth  although  no  more  outside swelling....

My  daughter's  doc  took  her  off  of  synthyroid  because  he  said it  wasn't  safe  for a celiac  since  they  can't  say it doesn't  contain  gluten.. The  tirosint  seems  to be  good  so far.... It  also is only T-4.

The  reason I LOVE  nature-throid  by RLC Labs  is  they  care  about  ingredients &  it  contains T-4, T-1, T-2-, T-3  & calcitonin,  all the  things  a  normal  person's  thyroid  makes  on a daily basis...  I was  on  synthyroid  for years, insurance  decided I  had to go to generic( levothyroxine) , cost  reasons,  then I  developed  the  angio  crap almost  immediately... I  demanded  I be  put  on a  whole glandular ....I  would  not  accept  anything  else, so with no thyroid  I would  die in a few weeks  so  doc  gave  in....I gave  him  two  whole glandular's  I would accept... I  was  not  going  to let  him  screw  me  over  this time.. It  wasn't  truly his  fault  , it  was  my insurance....I'm his  only patient  that  he  writes  this script  for... he  will not  do it  for  any others  in  his  large  practice.. He  said  he  gets  his pay from  the  synthyroid  mafia so  he  can't  risk  loosing  his practice  ....It is  a  shame  when  doctors  have to buckle under  to the  strong arm  pharmacy companies but  that is the  American  way these  days...

I  pay out  of my pocket  for this drug but  it isn't  expensive....I don't  want  the insurance  to have  anymore  say in what I can put  in my body....

I feel  like  a  real person  on this  not a space cadet!

[nvsmom]

I'm in Canada so what I take, even if the same name brand, may be different than what is available in the USA.

 

I used to take about 150mcg of Levothyroxine as Synthroid.  It wasn't doing it for me so I switched to a natural desiccated thyroid product called Erfa's Thyroid.  I take about the same amount (150) as when I was on Synthroid. I personally like it MUCH better than the Synthroid, and would hate to have to go back to Synthroid.

 

Synthetic T4 is a good place to start though.  It does work for most hypothyroid patients.  Good luck with it!  

[mamaw]

Erfa  is  the other one  I had  said  I would take....My doc  here  would not prescribe  it  for me  because  it  wasn't  US  regulated which  made  me laugh...at  that  time  Mylan  had  several  lawsuits  happening... I  laughed  & said  I would rather take  my chances  on a Canadian  drug...but  he  gave  in  to the one  I now  take. I never  want to  change.....

I honestly believe  whole  glandular  is  best....

[StephanieL]

My DS takes Mylan brand for several years with no issues.  I always call the pharmacy and ask them for that specific brand to be sure that's what we get for him.  I have called several times on it (when changing dosages and just checking up). 

I was told by our Endo just last week that Synthroid is not gluten-free but I don't know if it was they won't guarantee or it actually isn't.

[etbtbfs]

I take both T3 (cytomel) and T4 (levoxyl) because King Pharmaceuticals, years ago, declared they are gluten-free. King is now owned by another company but i still trust their products. Also, the maker of Unithroid declares it is gluten-free.

I wont use Synthroid. Their attitude reminds me of the old Lilly Tomlin joke .... Were the phone company, we dont care, we dont have to.

[HappyMom623]

So get this. My doctor's nurse called me back today about concern with Levo not being gluten free and tells me this:

 

"That if there was gluten in the pill, he is sure that the amount is so small that it would not affect you! But if you have issues with this, you can make another appointment to discuss with us"

 

WOWWWWWW. So I guess they don't understand Celiac AT ALL. If I'm taking something EVERY day of my life, even a small amount of gluten is going to cause problems.

 

I'm so frustrated I could cry. Thank god I have an appointment with an Endo in April. Maybe she can put me on Tirosint.

[HappyMom623]

Just to add -- right now I'm NOT having issues with the Levo, but I'd really prefer something like Tirosint so I don't have to worry about fillers... like ever. I asked the doctor to give me a new med and he completely ignored my request.

 

I have lost all faith in the medical field, officially.

[mamaw]

that's  the medical  profession!!!! I understand  your  pain & anger, ... but  I wouldn't  expect much more  from  an endo doc... .non-caring  & ignorant....remember  the  drug  mfg   owns  these  guys  .......honestly  I think  endo  docs  are  the worse ....

sorry I wish I could  find  something  nice  to say about  them....I would  love for  an endo  doc  to change  my mind.....

[HappyMom623]

Damn.

 

Well here's a question.

 

If the doc sends in my script and it's for a generic Levothyroxine, Am I able to pay out of pocket for the name brand??? Tirosint is the exact same drug, just in liquid from. I don't understand if I can do this or not, but since it's the same exact medicine, I'm not seeing why I couldn't. I'm going to call the pharmacy tonight and see what I can do.

[Gemini]

Open Original Shared Link

 

Here is some good information on natural thyroid hormone.  I use Nature-throid with good results but did use levothyroxine for years and stopped because once I healed from Celiac, it just wasn't doing it's job and I needed to use one with T3.  It is gluten free and so is Armour.  This information also goes into detail about the ingredients in natural thyroid hormone and explains what each one is for.....fillers and all. 

 

People get overly worried about gluten in thyroid meds.  Yes, we need to check everything but I have yet to find one that actually did contain gluten and I have been taking various thyroid hormones for well over 20 years now and have never been glutened by any of them.  Synthroid does not guarantee gluten free status but that is just a disclaimer and does not mean it is not gluten free.  I would never use Synthroid because its a brand name and costs a fortune here in the US, unless that has changed.

 

Endocrinologists fear natural thyroid hormone because they are taught in medical school that they are not consistent with dosage and probably, these companies do not buy doctors lunch.     But they are safe and work well for many.  They are also much cheaper than most brand name, synthetic hormones and are easily affordable out of pocket.  I am in the US.  Remember, natural thyroid hormone were the ones originally used, until synthetics came about.  I stick with what works.

 

Good luck!

[HappyMom623]

Thanks! I'm sure you are right. I'm probably worrying too much, and I'm going to drop it.

 

I just have felt SO bad, for so long because doctors wouldn't listen to me about Celiac, and then my thyroid. I was worried that I'd finally get medication and then read that it may not even be safe!!

 

I just want to do everything I can to feel as best as I can.

 

Thanks!!

[HappyMom623]

and yeah, my PCP definitely isn't going to prescribe me natural meds. LOL.

[Gemini]

I totally understand what you feel.  Been there, done that, not pretty!  I ended up finding a functional medicine MD many years ago when it wasn't all the rage to do so and she was the ONLY doctor willing to give me natural dessicated hormone and dose by symptoms first, blood work second.  I have Celiac and Hashi's also and was very messed up 10 years ago.  It is getting easier to find doctors willing to help but still not easy enough.  Old habits die hard with them.

 

Just keep in mind that as you heal, there may be a giant shift at some point and the hormone level you take now may be too much once you start absorbing better.  If you start to feel hyper at any time, don't take any more hormone and call the doctor's office about it.  That is a good sign, in a crazy sort of way.  It means your gut is getting better. It took 4 years for that to happen to me so don't be sitting around waiting for it to happen...keep it in the back of your head!    Be patient...it takes a while before your thyroid is balanced and happy and you heal from Celiac damage.  It will happen though!

[HappyMom623]

Thanks! I've been gluten-free for 3 years.. so hopefully some healing has already happened!

[nvsmom]

I too had to doctor shop to find someone who would prescribe NDT to me. My GP told me his "scientic mind" would not allow him to prescribe NDT.  LOL      I can laugh now but at the time I was so frustrated with him that I was in tears.

 

Getting the thyroid right is hard.  Hang in there.

[HappyMom623]

Oh good lord. I don't understand why there is such debate about it!!! What did they use years before synthetic medicine exsisted? UGH!