The THYROID Thread

[Piper]

Thank you for your replies to when you take your thyroid. I did some research and found this study. I think I am going to try taking it right before I go to bed.

http://thyroid.about.com/od/thyroiddrugstreatments/a/bedtime.htm

 

[Christine]

Christine,

Thanks for the reply. I'm fortunate not to have any allergies but I also have heard the generics are iffy in terms of dosage accuracy as well as fillers of unknown variety.

Also, in addition to food, one thing I found that also affected my absorption was my IUD. Its a Mirena that lasts 5 years and as the potency goes down from about year 4 or 5 so does my dosage of Levoxyl, from 150mcg to 125mcg.

The problem with generics is that the pharmacy can change the supplier from month to month so you are getting a different "brand" every time. My local CVS states that they only use the generic from Mylan pharmaceuticals and they feel it is good. It still has that "bad" filler though so I can't use it.

As for the birth control, many years ago I tried taking oral contraceptives and my TSH went to something like 8.0 no matter what I tried. Finallly had to stop using them. The doctors were baffled.

 

[luvmarypoppins]

Hi everyone, I will catch up when I get back. Just popping in from the Beach Club. tomm. we are changing to the yacht club.

Loriann - glad your biopsy is over sorry for the issues you had.

The weather has been so so. We always are inside when it rains so far.

Ate at chefs, citricos for our anniv. and hollywood brown derby so far, tonight cape may. Its really crowded. Wishes was a zoo the other night and we are going to brave the star wars parade on sunday and then leave there.

Storm a long bay is the best! So is the wonderful beach club concierge floor, especially since we arent even paying for it!! Guess all dh trips and ff miles are good for something after all

 

[Christine]

Three month supply of Levoxyl = $20

Three month supply of Tirosint = $70

Yikes!

 

[Enchanted Minnie]

Hey everyone! I was diagnosed with Hashimoto's about 3 years ago. I've been on Levoxyl, levothryoxin, then Synthroid. I've had 2 different endo's. I stopped going to the first one when she kept saying my numbers are fine, maybe I'm depressed when I said I was still tired. Then she suggested I do a sleep study. Yeah ok. My new endo is pretty good but darn it he's retiring! Plus, he still doesn't really listen to me when I say I'm tired!!!!! I just want to not be tired darn it!

So I started researching and am trying out desiccated bovine thryoid. We'll see if it helps! Along with coconut oil, selenium, vitamin D and my regular multivitamin!

Anyway just wanted to introduce myself, glad to know that there are many others of us around, not in a good way but at least we're not alone!

 

[Christine]

Welcome Enchanted Minnie! Let us know how that dessicated thyroid medication works for you.

You'll probably see that the most "vocal" of us on this thread are thyroid cancer survivors; however, a few people pop in with just regular thyroid issues so hopefully you'll find someone to compare notes with.

 

[3prettyprincesses]

I'm trying not to freak out here lol but today I went in to pick up my Levoxyl prescription refill and the pharmacist told me that it's all been recalled! They claim they don't have any and won't till maybe sometime in mid 2014. I have one, ONE pill left. I told the pharmacist that and she shrugged and said talk to your dr. Nice. She was ridiculously unhelpful and I asked her what am I supposed to do? Talk to your dr. Basically, it wasn't her problem even though I've been getting my prescription there for over 6 years.

I'm beyond irritated. How can there be no more left and yet nobody thought to contact me, the patient?? Apparently my only option is to switch to another medicine for my thyroid. I cannot tolerate the Armour so I guess that leaves me with Synthroid. Does anyone know if it's gluten free? Is it a difficult transition, going from Levoxyl to Synthroid?

 

[Christine]

I'm trying not to freak out here lol but today I went in to pick up my Levoxyl prescription refill and the pharmacist told me that it's all been recalled! They claim they don't have any and won't till maybe sometime in mid 2014. I have one, ONE pill left. I told the pharmacist that and she shrugged and said talk to your dr. Nice. She was ridiculously unhelpful and I asked her what am I supposed to do? Talk to your dr. Basically, it wasn't her problem even though I've been getting my prescription there for over 6 years.

I'm beyond irritated. How can there be no more left and yet nobody thought to contact me, the patient?? Apparently my only option is to switch to another medicine for my thyroid. I cannot tolerate the Armour so I guess that leaves me with Synthroid. Does anyone know if it's gluten free? Is it a difficult transition, going from Levoxyl to Synthroid?

3prettyprincesses: if you read above, you will see that a few of us have run into this.

My pharmacy did not tell me either and when I went to pick up the medication, she pulled it out and showed me it was Synthroid. I have an allergy to the povidone filler in Synthroid and I told her I could not use it. She volunteered to call my doctor to find a suitable replacement. She worked with me right there to find one. For me it is Tirosint. It is much more expensive but I'm going to have to live with it until Levoxyl comes back into production.

The medication itself is fine; however, apparently the containers used to ship the Levoxyl were giving off a foul odor and making the meds smell. They pulled it all and, why it takes a year to get more out there is unknown to me.

I do agree that they could have notified Levoyxl customers in some way. It's not as if they don't have all of our information.

 

[3prettyprincesses]

3prettyprincesses: if you read above, you will see that a few of us have run into this.

My pharmacy did not tell me either and when I went to pick up the medication, she pulled it out and showed me it was Synthroid. I have an allergy to the povidone filler in Synthroid and I told her I could not use it. She volunteered to call my doctor to find a suitable replacement. She worked with me right there to find one. For me it is Tirosint. It is much more expensive but I'm going to have to live with it until Levoxyl comes back into production.

The medication itself is fine; however, apparently the containers used to ship the Levoxyl were giving off a foul odor and making the meds smell. They pulled it all and, why it takes a year to get more out there is unknown to me.

I do agree that they could have notified Levoyxl customers in some way. It's not as if they don't have all of our information.

I see I'm in the same boat as some of you here! Strange how we all seemed to find out by going in to pick up our prescription. Shouldn't the dr. have called us to let us know? I think so. At least your pharmacist was helpful though.

I've started the Synthroid and so far so good. It's only been a day but hopefully the transition will be smooth. I really hate riding the thyroid roller coaster.

Has anyone else made the switch from Levoxyl to Synthroid? How are you doing?

 

[SingingMom]

I see I'm in the same boat as some of you here! Strange how we all seemed to find out by going in to pick up our prescription. Shouldn't the dr. have called us to let us know? I think so. At least your pharmacist was helpful though.

I've started the Synthroid and so far so good. It's only been a day but hopefully the transition will be smooth. I really hate riding the thyroid roller coaster.

Has anyone else made the switch from Levoxyl to Synthroid? How are you doing?

Good luck with the switch. Sometimes being a patient is so frustrating!!!

I have been on synthroid for 20 years. Both my endocrinologists have told me to always insist on synthroid. When my husband's insurance changed, the mail order pharmacy wanted to change to levoxyl and I had to make a big stink. @@.

"SingingMom" ....Sent from my iPad using DISBoards

 

[AmazingGrace]

Got my biopsy report back. It's benign and the doctor says I just need to follow up with ultrasound in six months. The bad thing is, I can feel this nodule and my thyroid is enlarged. There wasn't a copy of the path report for me to take, but what I saw said "colloid to hurthle cells present. When I told him about my discomfort, he was like 'oh well, maybe you need an upper GI or an ENT consult. I know I should be relieved, but I have a bad feeling about this.

 

[Christine]

Good luck with the switch. Sometimes being a patient is so frustrating!!!

I have been on synthroid for 20 years. Both my endocrinologists have told me to always insist on synthroid. When my husband's insurance changed, the mail order pharmacy wanted to change to levoxyl and I had to make a big stink. @@.

"SingingMom" ....Sent from my iPad using DISBoards

I'm not sure about why they are stuck on Synthroid. I've been told by three endos to only stick with brand name. That could be Synthroid, Levothroid, or Levoxyl. Since that time many years ago, they've added a few more "brands" such as Unithroid and Tirosint. All well-respected brand name thyroid preparations.

I initially started out on Synthroid at 125 mcg which was not enough for me. Back then, the next dose up was 150 mcg which was too high. Levothroid made a .137 preparation so I was switched to that and never had a problem. Then there was a recall on Levothroid and I had to go to Synthroid. By then, they were making a .137 dosage. I switched over and never felt a bit of difference and my TSH remained stable. The bonus was that Levothroid was $5 cheaper per month. Anyway, while on Synthroid I discovered that I was allergic to any medication that includes povidone. So I had to switch to Levoxyl because it was the only one that didn't contain that. My endo was okay with it because it was a brand name. I switched to their .137 and have no issues with TSH stabilization or how I feel. Bigger bonus: it was really cheap--runs the same price as generic which is why a lot of people *think* it's a generic. I pay $20 for a 3 month supply.

But, now I on to Tirosint. I expect I won't see a change at all. I don't think the "Synthroid" preference is really the case anymore but I think it's been hammered into a lot of doctors heads because many years ago it was the only thing out there as far as T4 preparations.

 

[SingingMom]

I don't think the "Synthroid" preference is really the case anymore but I think it's been hammered into a lot of doctors heads because many years ago it was the only thing out there as far as T4 preparations.

You could be right! But, in my own case, I've never had a problem with synthroid so I am of the thought "if it ain't broke, don't fix it"!
I was a young thyroid cancer patient (29) and 21 years later, am still hanging in there! Lol

"SingingMom" ....Sent from my iPad using DISBoards

 

[Christine]

You could be right! But, in my own case, I've never had a problem with synthroid so I am of the thought "if it ain't broke, don't fix it"!
I was a young thyroid cancer patient (29) and 21 years later, am still hanging in there! Lol

"SingingMom" ....Sent from my iPad using DISBoards

Oh, I definitely agree with the "if it ain't broke, don't fix it" mindset!! For me, though, at times, it really does come down to money. My health insurance charged a premium for Synthroid (as they do now for Tirosint). For something that you have to take every day, every month, every year, the cost was really adding up for me when I had to figure it in with all my son's asthma medications. If I could go from $70 every three months to $20 every three months with no impact to how I felt, then I was all for that!!!!

 

[luvmarypoppins]

Got my biopsy report back. It's benign and the doctor says I just need to follow up with ultrasound in six months. The bad thing is, I can feel this nodule and my thyroid is enlarged. There wasn't a copy of the path report for me to take, but what I saw said "colloid to hurthle cells present. When I told him about my discomfort, he was like 'oh well, maybe you need an upper GI or an ENT consult. I know I should be relieved, but I have a bad feeling about this.

Glad to hear you got great results LoriAnn.

Who did your original biopsy? If they now want you to have an ent referral. I would take the ent referral especially since you say you are having discomfort. Is the discomfort just pain or swallowing issues etc?

I think its wise to get an ent opinion/referral.

Wishing you all the best.

 

[luvmarypoppins]

welcome to all the new posters

Sorry to hear everyone is having all the med problems with levoxyl. I think its terrible about the short to no notice of replacement too.

Sounds like no ones dr. told them about it ahead of time?

I have always taken name brand synthroid. My ins. wont pay for it either, so Christine I feel your med pain. Mine is $25 a month plus all my ds asthma meds and my other meds. I think we get 7 between us a month. The pharm loves us!

Nothing too much new, other than I am going to the rad. onc. on june 20th.

Our trip to disney was good, You can read about my magical night on the resteraunt board, the thread is - I cried at Yachtsman 6/1.

My r hip was hurting a lot when we were there. I dont know if the reclast infusion I had is suppose to help it or not but I am having a lot of issues. I dread going to the dr. I already know the huge doses of 200 synthroid have probably had a negative impact on it as well. Even the endo in the past mentioned it does a number on your bones at such a high dose etc. sigh, sigh.

 

[angwill]

Oh, I definitely agree with the "if it ain't broke, don't fix it" mindset!! For me, though, at times, it really does come down to money. My health insurance charged a premium for Synthroid (as they do now for Tirosint). For something that you have to take every day, every month, every year, the cost was really adding up for me when I had to figure it in with all my son's asthma medications. If I could go from $70 every three months to $20 every three months with no impact to how I felt, then I was all for that!!!!

I have been fortunate to have the same experience with Synthroid and Levothyroxin and them both effecting me the exact same over the last 20+ years. I switched from Synthroid to Levothyroxin when I lost a job and the difference in cost was over $100 for a 3 month supply. I did the switch another time back to Synthroid and then back to Levo for I forget what reason and both times the dose was the same for me on both and I had none of the issues that I have always heard there being between Synthroid and the Levo's. I just assumed I was lucky.

I do have my first ultrasound on my thyroid coming up next Tuesday. Can anyone explain what they do? Do I have to not eat before or drink anything funky at the hospital? I have been told nothing about preping for it. I don't even know why my doctor wants one done other than I never had one done. She has not even felt my thyroid so she didn't feel anything on it.

 

[SingingMom]

I have been fortunate to have the same experience with Synthroid and Levothyroxin and them both effecting me the exact same over the last 20+ years. I switched from Synthroid to Levothyroxin when I lost a job and the difference in cost was over $100 for a 3 month supply. I did the switch another time back to Synthroid and then back to Levo for I forget what reason and both times the dose was the same for me on both and I had none of the issues that I have always heard there being between Synthroid and the Levo's. I just assumed I was lucky.

I do have my first ultrasound on my thyroid coming up next Tuesday. Can anyone explain what they do? Do I have to not eat before or drink anything funky at the hospital? I have been told nothing about preping for it. I don't even know why my doctor wants one done other than I never had one done. She has not even felt my thyroid so she didn't feel anything on it.

No prep for a thyroid ultrasound for me. I had one done last year, when I changed endocrinologists. Since she wasn't my original doctor, she wanted a baseline for her own files. Of course, I haven't had a thyroid for 21 years, so it sort of amused me. Lol

My "treatment plan" was different 21 years ago than what they would supposedly follow now. My original endo was a saint, treated me like a partner in the journey, and respected my opinions. Loved him. He left private practice for research (what a loss for those who had one-on-one care from him) and referred me to a colleague. Stayed with her 10+ years and hated her. (How stupid of ME, but the practice was supposedly " the best" in the area. @@). She couldn't get over how I was not treated the way "we do it now" and really caused me a lot of angst.

Finally I found this other group. My current endo did also say, " Hmm, protocol is different now..." But she did not berate me or insist on unnecessary tests and procedures. I like her very much, but no one will ever be like that original doctor!

The ultrasound consisted of lying on a table and having the tech scan your neck. The only "discomfort" was laying flat with no pillow, or with the pillow under your neck, not your head. I like my head elevated - normally sleep with 3 or 4 pillows! Lol. The other annoyance is not swallowing when some one says "don't swallow". Lol of COURSE, that's when I need to swallow! ::tee hee::

Seriously though, the ultrasound doesn't take long and it is pain- free. Good luck!

"SingingMom" ....Sent from my iPad using DISBoards

 

[bellanotte10]

Yeah like singingmom said, no prep necessary. It took me 10 minutes for the test and longer to get the goo off. Not bad at all!

 

[angwill]

Thanks for the info. Since I now know there will be goo involved I will have to bring a hair tie. Blech!!! lol It sounds simple and painless and of course I am going to be wanting to swallow when told not to as well. lol