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Does anyone else take Synthroid for an underactive thyroid?

Ittybittykittykat

Shiny_Rock
Joined
Feb 12, 2014
Messages
118
Hi! :wavey:
I was hoping to get someone advise from anyone that deals with hypothyroidism on PS. I'm part of other thyca related forums but I think that getting some input from PScopers might help also. (I spend a lot of time lurking and reading all the interesting jewelry posts. It helps add a little shine to my life.) My SO thinks that the people that post on thyca forums are the ones that are dealing with the bad symptoms & that people who are feeling alright don't really post on them. I don't fully believe this but I see his point.

I was diagnosed with ThyCa in 2012, I had a full thyroidectomy, and RAI treatment. I was then put on Synthroid. The last three years have been a roller coaster ride and I still don't feel "normal". I have been on 5 different doses and I constantly bounce back and forth between 112-150 I've also seen 6 different endocrinologists.

I have considered NDT but my doctors wont prescribe it and I'm afraid my symptoms might get worse while transitioning into it. I already deal with brain fog, difficulty concentrating, severe fatigue I sleep over 10 hours a night and it's never enough. I joke that I have an 8 hour energy reserve but it's true. After 6 hours of work I'm exhausted. I get to my night classes and I can't concentrate, I fall asleep sometimes. :snore: This is all added to the weight gain, swollen face, dry skin, brittle nails, joint pain, low libido etc.

I'm in my mid 20's this isn't how I pictured myself at this age. I should be focusing on finishing my degree, my relationship with a caring man that's been through it all with me (we would like to get engaged in the next few months) and starting a family. BUT :wall: I'm a zombie and I'm so tired of searching for a new doctor that will listen to me that I've given up and stayed with the symptoms even though the B/W says I'm fine. Maybe I'm a little depressed.

I didn't expect to write this much but ANY advise would be appreciated. Has anyone dealt with doctors that won't listen to them? Specifically about thyroid levels... Has anyone had a successful transition into using NDT??

Thank you guys for giving me beautiful distractions!
 

sonnyjane

Ideal_Rock
Joined
Jul 13, 2008
Messages
2,476
Re: Does anyone else take Synthroid for an underactive thyro

Hi! I too had thyroid cancer and had my thyroid completely removed in 2011. I'm 32 right now. The first two years they adjusted my dose quite a bit but I've been on the same dose now for a while. I alternate - 3 days of 125 and 4 days of 112. That keeps my levels within the healthy range without being too low. My doctor is conservative and doesn't want TSH too low because over-medication can lead to decreased bone and heart health.

I have gained considerable weight (30 pounds), but I've also dramatically changed my lifestyle and so I can't blame the medicine for that, nor can I say that I've really tried to lose it. Other than that I think I feel pretty "normal" whatever that means. Some days I'll be foggy, and there have been times that I went in to be tested because I thought maybe I needed an adjustment but it was fine. One thing I started doing in the last six months is taking my medicine earlier. I used to only wait about 30-45 minutes before eating which I know can affect absorption, so now I set my alarm for 5:00 AM, take my pill, sleep a few more hours, then eat breakfast much later and that has seemed to help.

I've not considered NDT. First of all I'm vegetarian so have no interest in that, but second I'm fairly satisfied with how I feel. Don't be afraid to get a new doctor. In all my encounters with thyroid patients, they mostly all have been dissatisfied with one of their doctors. I went through two before my current one and actually now I just use my primary, not an endo.

Before I even read your last paragraph I was going to say you sound depressed. When I'm out doing things I enjoy, I feel great. If I'm home on the couch all I can think of is how tired I am. Don't jump toward meds right away necessarily but you may want to talk to a therapist. I'm a huge advocate of therapy. I do think you have some physical symptoms too though, so I'd recommend a new doctor that listens to you. Have you ever been on a dose that felt good?
 

Ittybittykittykat

Shiny_Rock
Joined
Feb 12, 2014
Messages
118
Re: Does anyone else take Synthroid for an underactive thyro

sonnyjane said:
Hi! I too had thyroid cancer and had my thyroid completely removed in 2011. I'm 32 right now. The first two years they adjusted my dose quite a bit but I've been on the same dose now for a while. I alternate - 3 days of 125 and 4 days of 112. That keeps my levels within the healthy range without being too low. My doctor is conservative and doesn't want TSH too low because over-medication can lead to decreased bone and heart health.

I have gained considerable weight (30 pounds), but I've also dramatically changed my lifestyle and so I can't blame the medicine for that, nor can I say that I've really tried to lose it. Other than that I think I feel pretty "normal" whatever that means. Some days I'll be foggy, and there have been times that I went in to be tested because I thought maybe I needed an adjustment but it was fine. One thing I started doing in the last six months is taking my medicine earlier. I used to only wait about 30-45 minutes before eating which I know can affect absorption, so now I set my alarm for 5:00 AM, take my pill, sleep a few more hours, then eat breakfast much later and that has seemed to help.

I've not considered NDT. First of all I'm vegetarian so have no interest in that, but second I'm fairly satisfied with how I feel. Don't be afraid to get a new doctor. In all my encounters with thyroid patients, they mostly all have been dissatisfied with one of their doctors. I went through two before my current one and actually now I just use my primary, not an endo.

Before I even read your last paragraph I was going to say you sound depressed. When I'm out doing things I enjoy, I feel great. If I'm home on the couch all I can think of is how tired I am. Don't jump toward meds right away necessarily but you may want to talk to a therapist. I'm a huge advocate of therapy. I do think you have some physical symptoms too though, so I'd recommend a new doctor that listens to you. Have you ever been on a dose that felt good?


Thank you for your response Sonnyjane!
I'm glad you've found a place where you are satisfied with your health. Unfortunately in my case I don't feel my health is keeping up with my lifestyle.

Doctors don't agree on the "normal range for TSH testing" and most try to alleviate symptoms by giving you more prescriptions rather than treating the underlying thyroid problem. That is why I'm looking for a doctor that listens to my concerns and is open to prescribing something other than Synthroid.

There are many things in my life I'm happy about I have a job I love, a career that motivates me, a supportive family and SO.
But my constant symptoms are keeping me from living life to the fullest.
I eat healthy, I workout, I take yoga. I see a therapist. Even a yoga therapist.

I know I'm not crazy and these are real symptoms. And I know there are other solutions to feel better I just need a doctor that will take me and my symptoms into consideration.

Thanks for answering my rant!
 

sonnyjane

Ideal_Rock
Joined
Jul 13, 2008
Messages
2,476
Re: Does anyone else take Synthroid for an underactive thyro

Have you ever discussed cytomel? After surgery and RAI, they had me on cytomel temporarily until I got my proper synthroid dose. I don't even know what it's supposed to do compared to synthroid just that it exists lol.
 

marymm

Ideal_Rock
Premium
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Apr 21, 2010
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5,514
Re: Does anyone else take Synthroid for an underactive thyro

OP - are you specifically referring to the brand-name Synthroid?

I do take generic levothyroxine for hypothryoidism and have done so for some years now. When I was first diagnosed (gosh, 20 years ago maybe?), I was prescribed I think brand-name Levoxyl or similar. It did take me maybe 6-9 months until the dosage was right for me. Then my employer changed insurance companies and Synthroid was covered so I was given that. I was on Synthroid for several months but did not feel "right" even though the blood test numbers were okay. I ended up paying the difference so I could take Levoxyl. At some point, generic levothyroxine was readily available, so that's what I take. I feel best when I'm on the low end of the normal range, and my blood test numbers and prescription dosage have been consistent for at least 10-12 years.

So, long story, but have you tried other versions besides Synthroid?
 

purplesparklies

Brilliant_Rock
Joined
Sep 28, 2010
Messages
744
Re: Does anyone else take Synthroid for an underactive thyro

I am hypothyroid and used to feel the same as you are describing. I tried countless doctors to no avail. Finally, a few years ago I found a doctor who understood what was going on and took me off Synthroid and prescribed a compounded T3 only medication. Turns out my body can not convert the T4 in Synthroid to the T3 my body needs. It is a bit frustrating because it is a compounded medication and there are not too many compounding pharmacies anymore. It also is not covered by insurance but it is so worth it. Thyroid issues are so much more complicated than most people, including doctors, realize and thyroid function affects so much.

Good luck!
 

ame

Super_Ideal_Rock
Joined
Jul 7, 2004
Messages
10,864
Re: Does anyone else take Synthroid for an underactive thyro

I was born without one entirely (I am that freak in the medical books that looks like quasimodo til she's 4) and I have been on Synthroid since before birth (my mom has a non-functioning one so she supplemented neonatally), so I have a lot of input, though my mom is the best source.

Either your dose is not high enough, or you need to try a different drug. Synthroid only supplements one type of the thyroid hormone, and there are other drugs that replace different types. Your body might also not convert it right. And that's possible. Armour did not work for me (not to mention taking something 3x a day is a giant pain in the ass) and really Synthroid is the only one so far that has steadily worked for me--but again--literally every day of my life save for trying other stuff to see how it would vary. But it's helped my mom, and my mother in law who also has had issues. Two of my cousins had thyroid cancer (we have thyroid drama all over the family), and one worked well with non-traditional medications, the other worked well with Synthroid. It's very much a your-body-varies situation.

It also took a while to find a decent Endo. The one I see now--a female who does not stick to just labs and really considers symptomatic response--is fantastic and took FOR-EVER to find. The one I saw before her, for years, treated me like a circus sideshow, because he knew who i was as soon as he saw me, based on medical textbooks. And he would show me off to medical students, other doctors, and basically treated me like dirt once we got to a certain point. My weight is always a disaster, and he would argue with me over dosage, not caring how I physically felt, just saying that my dose was right because my TSH was in range and saying I am just a "fat american", and I can lose weight by not eating like a fat american. He ignored T3, T4, any other T scores. He just cared about TSH. I finally had enough of his crap and found the current one, and she IMMEDIATELY raised it back to where it should've been--and I feel fantastic, still fat, but she thinks that's going to take time. She runs a full on T panel, and metabolic panel every 3 months, and I only see her in office yearly for reups or if my ranges look off when my bloodwork comes in to her. It's awesome. I used to have to see that jerk every 3 months and he was usually 3 ****ing hours behind every damn time and if you left or tried to reschedule--he'd BILL YOU as a noshow! FOR HIM BEING BEHIND! :angryfire:
 

purplesparklies

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Joined
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Messages
744
Re: Does anyone else take Synthroid for an underactive thyro

Ame, may I ask what area you are in? Sadly, my doctor passed away and I have not been able to find another one who understands my needs and is willing and able to treat accordingly. I am always on the hunt for a decent doctor.
 

ame

Super_Ideal_Rock
Joined
Jul 7, 2004
Messages
10,864
Re: Does anyone else take Synthroid for an underactive thyro

purplesparklies|1446746774|3946053 said:
Ame, may I ask what area you are in? Sadly, my doctor passed away and I have not been able to find another one who understands my needs and is willing and able to treat accordingly. I am always on the hunt for a decent doctor.
STL. And she's really about the only dr I've found here that I am really happy with. All my other ones besides my Gyno are basically like "yea you're fine, whatever, I have other shit to do, you're a hypochondriac, get out."
 

lorrissey

Brilliant_Rock
Joined
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Messages
1,175
Re: Does anyone else take Synthroid for an underactive thyro

I have Grave's Disease and had the iodine ablation done and have been rollercoastering from hyper to hypo for 1.5 years now. I'm on levothyroxine and my numbers still say I'm hyper, but I feel hypo. I feel your pain. I'm going in for another round of labs and a check up in the next couple weeks, but this time I demanded that all my levels be checked because clearly my symptoms don't match the numbers. I'm hoping that we can finally get some kind of closure to this up and down. From not being able to sleep at all (hyper) to falling asleep at the wheel and sleeping from 5:30pm to 5:30am (hypo). I don't understand why the small adjustments to my medication can cause such a severe swing in symptoms. Pooping non stop to not pooping for like a week. Irritated, dry, sandy eye feeling to just droopy, heavy, sleepy eyelids. I've been dealing with this for about 4 ish years now and regret ever getting the iodine ablation. I was better off being hyper and taking the thyroid suppressing medication than I am now swinging back and forth.
 

jazzoboe

Shiny_Rock
Joined
Feb 21, 2010
Messages
188
Re: Does anyone else take Synthroid for an underactive thyro

I was on levothyroxine for about 6 months, then levo. plus cytomel for another 6 months, which was better, but my levels still wouldn't stay up. Then my doc switched me to Armour, which I've been on for about a year now, with just one dosage increase a couple of months in. I feel much better and my levels haves stayed steady, though I still haven't been able to lose much weight. I also discovered that I have celiac disease, which gives me like no gastrointestinal symptoms, but rather exacerbates my thyroid symptoms. So that's annoying, by since going strictly gluten free I've been feeling consistently better overall.

If you're not happy with how you feel on your current meds, it's definitely worth trying something else.

Also, I should mention that I still have my thyroid; I have Hashimoto's with a history of really high antibody levels
 

diamondringlover

Ideal_Rock
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4,397
Re: Does anyone else take Synthroid for an underactive thyro

I really don't have any advice...but I will say I got diagnosed with low thyroid when I was 16 and I am now 54 and I have been on the same dosage of synthroid all these years..I do still have my thyroid, my only issues is I have a intolerance of extreme cold and hot and losing weight is tough, my metabolism is horrible.

Hang in there they will get you meds correct I know that its tough but eventually you should even out once they find the right dosage.
 

ame

Super_Ideal_Rock
Joined
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Messages
10,864
Re: Does anyone else take Synthroid for an underactive thyro

Yea weight loss is a fiasco when you have low/no thyroid. My endo is a huge proponent of keto/low carb partly for weightloss reasons and partly because it tends to help hormonally with the absorption of the medication. Avoid soy at all costs. Little or no in your diet because your body cannot absorb the meds right--soy and thyroid issues are big.
 

sonnyjane

Ideal_Rock
Joined
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Messages
2,476
Re: Does anyone else take Synthroid for an underactive thyro

ame|1446829661|3946324 said:
Yea weight loss is a fiasco when you have low/no thyroid. My endo is a huge proponent of keto/low carb partly for weightloss reasons and partly because it tends to help hormonally with the absorption of the medication. Avoid soy at all costs. Little or no in your diet because your body cannot absorb the meds right--soy and thyroid issues are big.

This is what I'm struggling with. I don't eat meat and obviously one of the main substitutes is soy. I talked to my doc about it (she also specializes in weight loss and nutrition) and she said as long as I wait several hours after my pill and don't eat tofu every day or something crazy like that, it shouldn't be a problem. Who knows.
 

Ittybittykittykat

Shiny_Rock
Joined
Feb 12, 2014
Messages
118
Re: Does anyone else take Synthroid for an underactive thyro

sonnyjane|1446667665|3945718 said:
Have you ever discussed cytomel? After surgery and RAI, they had me on cytomel temporarily until I got my proper synthroid dose. I don't even know what it's supposed to do compared to synthroid just that it exists lol.


I haven't asked my doctor about cytomel because she just refuses to change my Synthroid. Any talk of symptoms and she tries to refer me to a psychiatrist "because I'm too anxious". I asked my pharmacist and he said doctors stopped prescribing it years ago. I will continue to look for a understanding doctor. Thanks for the advise!
 

Ittybittykittykat

Shiny_Rock
Joined
Feb 12, 2014
Messages
118
Re: Does anyone else take Synthroid for an underactive thyro

marymm|1446674346|3945784 said:
OP - are you specifically referring to the brand-name Synthroid?

I do take generic levothyroxine for hypothryoidism and have done so for some years now. When I was first diagnosed (gosh, 20 years ago maybe?), I was prescribed I think brand-name Levoxyl or similar. It did take me maybe 6-9 months until the dosage was right for me. Then my employer changed insurance companies and Synthroid was covered so I was given that. I was on Synthroid for several months but did not feel "right" even though the blood test numbers were okay. I ended up paying the difference so I could take Levoxyl. At some point, generic levothyroxine was readily available, so that's what I take. I feel best when I'm on the low end of the normal range, and my blood test numbers and prescription dosage have been consistent for at least 10-12 years.

So, long story, but have you tried other versions besides Synthroid?


Hi Marymm! Thank you for your input. I used Synthroid in the title since it is the main drug prescribed but any advice is helpful. I haven't tried anything other than Synthroid. My insurance covers it and my doctors have all eagerly prescribed brand name over generic. I will take your advise and look into taking a different version.
 

Ittybittykittykat

Shiny_Rock
Joined
Feb 12, 2014
Messages
118
Re: Does anyone else take Synthroid for an underactive thyro

purplesparklies|1446736157|3946002 said:
I am hypothyroid and used to feel the same as you are describing. I tried countless doctors to no avail. Finally, a few years ago I found a doctor who understood what was going on and took me off Synthroid and prescribed a compounded T3 only medication. Turns out my body can not convert the T4 in Synthroid to the T3 my body needs. It is a bit frustrating because it is a compounded medication and there are not too many compounding pharmacies anymore. It also is not covered by insurance but it is so worth it. Thyroid issues are so much more complicated than most people, including doctors, realize and thyroid function affects so much.

Good luck!

Thank you for your words of support purplesparklies :)) Before my own experience I had no idea how important that little butterfly gland really is. I wish there was more support and information out there for people that deal with thyroid problems it's too common yet constantly swept under the rug :wall: . I'm still searching for the "right" doctor. Good luck to you as well.
 

Ittybittykittykat

Shiny_Rock
Joined
Feb 12, 2014
Messages
118
Re: Does anyone else take Synthroid for an underactive thyro

ame|1446744342|3946043 said:
I was born without one entirely (I am that freak in the medical books that looks like quasimodo til she's 4) and I have been on Synthroid since before birth (my mom has a non-functioning one so she supplemented neonatally), so I have a lot of input, though my mom is the best source.

Either your dose is not high enough, or you need to try a different drug. Synthroid only supplements one type of the thyroid hormone, and there are other drugs that replace different types. Your body might also not convert it right. And that's possible. Armour did not work for me (not to mention taking something 3x a day is a giant pain in the a$$) and really Synthroid is the only one so far that has steadily worked for me--but again--literally every day of my life save for trying other stuff to see how it would vary. But it's helped my mom, and my mother in law who also has had issues. Two of my cousins had thyroid cancer (we have thyroid drama all over the family), and one worked well with non-traditional medications, the other worked well with Synthroid. It's very much a your-body-varies situation.

It also took a while to find a decent Endo. The one I see now--a female who does not stick to just labs and really considers symptomatic response--is fantastic and took FOR-EVER to find. The one I saw before her, for years, treated me like a circus sideshow, because he knew who i was as soon as he saw me, based on medical textbooks. And he would show me off to medical students, other doctors, and basically treated me like dirt once we got to a certain point. My weight is always a disaster, and he would argue with me over dosage, not caring how I physically felt, just saying that my dose was right because my TSH was in range and saying I am just a "fat american", and I can lose weight by not eating like a fat american. He ignored T3, T4, any other T scores. He just cared about TSH. I finally had enough of his crap and found the current one, and she IMMEDIATELY raised it back to where it should've been--and I feel fantastic, still fat, but she thinks that's going to take time. She runs a full on T panel, and metabolic panel every 3 months, and I only see her in office yearly for reups or if my ranges look off when my bloodwork comes in to her. It's awesome. I used to have to see that jerk every 3 months and he was usually 3 ****ing hours behind every damn time and if you left or tried to reschedule--he'd BILL YOU as a noshow! FOR HIM BEING BEHIND! :angryfire:


Hi Ame
Your story is much more frustrating than mine. I have read up on congenital hypothyroid it's not easy for a child to be treated so young I'm glad you are doing better.I also believe different people have different responses the battle is finding a doctor that will work with me. Instead of accusing me of being crazy. :angryfire: I can't believe how rude some doctors can be! :angryfire: Your new doctor sounds amazing I hope I can find one like her.
I wish you and your family the best of luck with these thyroid issues <3
 

Ittybittykittykat

Shiny_Rock
Joined
Feb 12, 2014
Messages
118
Re: Does anyone else take Synthroid for an underactive thyro

diamondrnglover|1446809657|3946257 said:
I really don't have any advice...but I will say I got diagnosed with low thyroid when I was 16 and I am now 54 and I have been on the same dosage of synthroid all these years..I do still have my thyroid, my only issues is I have a intolerance of extreme cold and hot and losing weight is tough, my metabolism is horrible.

Hang in there they will get you meds correct I know that its tough but eventually you should even out once they find the right dosage.

Thank you for your kind words! I hope you too will find a medium. :))
 

Ittybittykittykat

Shiny_Rock
Joined
Feb 12, 2014
Messages
118
Re: Does anyone else take Synthroid for an underactive thyro

ame|1446829661|3946324 said:
Yea weight loss is a fiasco when you have low/no thyroid. My endo is a huge proponent of keto/low carb partly for weightloss reasons and partly because it tends to help hormonally with the absorption of the medication. Avoid soy at all costs. Little or no in your diet because your body cannot absorb the meds right--soy and thyroid issues are big.

Yes my weight bounces back and forth along with the other symptoms. I avoid soy, and gluten.
 

Ittybittykittykat

Shiny_Rock
Joined
Feb 12, 2014
Messages
118
Re: Does anyone else take Synthroid for an underactive thyro

jazzoboe|1446764430|3946127 said:
I was on levothyroxine for about 6 months, then levo. plus cytomel for another 6 months, which was better, but my levels still wouldn't stay up. Then my doc switched me to Armour, which I've been on for about a year now, with just one dosage increase a couple of months in. I feel much better and my levels haves stayed steady, though I still haven't been able to lose much weight. I also discovered that I have celiac disease, which gives me like no gastrointestinal symptoms, but rather exacerbates my thyroid symptoms. So that's annoying, by since going strictly gluten free I've been feeling consistently better overall.

If you're not happy with how you feel on your current meds, it's definitely worth trying something else.

Also, I should mention that I still have my thyroid; I have Hashimoto's with a history of really high antibody levels

Thanks Jazzoboe. I will continue the search. Good luck with your treatment!
 

Ittybittykittykat

Shiny_Rock
Joined
Feb 12, 2014
Messages
118
Re: Does anyone else take Synthroid for an underactive thyro

lorrissey|1446763257|3946126 said:
I have Grave's Disease and had the iodine ablation done and have been rollercoastering from hyper to hypo for 1.5 years now. I'm on levothyroxine and my numbers still say I'm hyper, but I feel hypo. I feel your pain. I'm going in for another round of labs and a check up in the next couple weeks, but this time I demanded that all my levels be checked because clearly my symptoms don't match the numbers. I'm hoping that we can finally get some kind of closure to this up and down. From not being able to sleep at all (hyper) to falling asleep at the wheel and sleeping from 5:30pm to 5:30am (hypo). I don't understand why the small adjustments to my medication can cause such a severe swing in symptoms. Pooping non stop to not pooping for like a week. Irritated, dry, sandy eye feeling to just droopy, heavy, sleepy eyelids. I've been dealing with this for about 4 ish years now and regret ever getting the iodine ablation. I was better off being hyper and taking the thyroid suppressing medication than I am now swinging back and forth.


The bouncing back and forth is horrible. I often look back and regret having had my whole thyroid removed. It was recommended but there's always that "maybe" that pops into my head. There are forums for thyroid issues and many people also deal with these symptoms it helps a little knowing your not imagining things. You will get better eventually hopefully soon! Best of luck and thank you for sharing your story!
 

Ittybittykittykat

Shiny_Rock
Joined
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Messages
118
Re: Does anyone else take Synthroid for an underactive thyro

Thank you to all the people that have shared their own stories! I really wish that we will all get to a better place. More people are taking a stand and demanding better care for thyroid diseases. We need to increase awareness of this problem so change can happen.
I knew pricescopers would come together with support. <3
 

pAndalove

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Re: Does anyone else take Synthroid for an underactive thyro

I have a good friend who is also searching for a better doctor. TBH I also thought some of her complaints were exaggerated until I read up on hypothyroidism. Now I join her at her doctors appointments to lend a second ear. Hope you find a good doctor!
 

Ittybittykittykat

Shiny_Rock
Joined
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Messages
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Re: Does anyone else take Synthroid for an underactive thyro

pAndalove|1446841367|3946391 said:
I have a good friend who is also searching for a better doctor. TBH I also thought some of her complaints were exaggerated until I read up on hypothyroidism. Now I join her at her doctors appointments to lend a second ear. Hope you find a good doctor!

You're a very supportive friend. Good luck to her! Congratulations on your engagement! Your ring is stunning :appl:
 

sonnyjane

Ideal_Rock
Joined
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Messages
2,476
Re: Does anyone else take Synthroid for an underactive thyro

pAndalove|1446841367|3946391 said:
I have a good friend who is also searching for a better doctor. TBH I also thought some of her complaints were exaggerated until I read up on hypothyroidism. Now I join her at her doctors appointments to lend a second ear. Hope you find a good doctor!

I have to admit that until mine was removed, I was dismissive of people that used their thyroid as an excuse for medical issues. I openly admit I was wrong. Once mine was removed, especially in the 6 weeks before I was allowed to start medication, it was incredibly obvious just how much that little bugger did.
 

Circe

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Re: Does anyone else take Synthroid for an underactive thyro

I used to take Synthroid, but it just plain didn't work for me ... and when I tried adding Cytomel, it gave me splitting headaches. After doing a lot of research, I decided I wanted to try Armour thyroid (natural thyroid hormone, animal-based), and ... boom. I felt like myself again.

The thing I like best about my endocrinologist (happy to give you his name if you're in NYC) is that he actually *listens* to me when I describe my symptoms. If your doctor is brushing you off, s/he's not doing the job right. I remember starting a thread about this in the Family forum, ages ago, and I remember if getting some great tips from others who were hypo ... but the most important one seemed to be finding a good doc who would listen and give you the time and advice you needed until you were well. YMMV.
 

ame

Super_Ideal_Rock
Joined
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Messages
10,864
Re: Does anyone else take Synthroid for an underactive thyro

Ittybittykittykat|1446839596|3946376 said:
marymm|1446674346|3945784 said:
OP - are you specifically referring to the brand-name Synthroid?

I do take generic levothyroxine for hypothryoidism and have done so for some years now. When I was first diagnosed (gosh, 20 years ago maybe?), I was prescribed I think brand-name Levoxyl or similar. It did take me maybe 6-9 months until the dosage was right for me. Then my employer changed insurance companies and Synthroid was covered so I was given that. I was on Synthroid for several months but did not feel "right" even though the blood test numbers were okay. I ended up paying the difference so I could take Levoxyl. At some point, generic levothyroxine was readily available, so that's what I take. I feel best when I'm on the low end of the normal range, and my blood test numbers and prescription dosage have been consistent for at least 10-12 years.

So, long story, but have you tried other versions besides Synthroid?


Hi Marymm! Thank you for your input. I used Synthroid in the title since it is the main drug prescribed but any advice is helpful. I haven't tried anything other than Synthroid. My insurance covers it and my doctors have all eagerly prescribed brand name over generic. I will take your advise and look into taking a different version.
#The Number 1 piece of advice from a person on this stuff for over 37 years including in utero--do NOT take a generic thyroid medication (or generic seizure medication. Two that vary wildly in generics from the real thing!) Reasons: 1) The brand name is not much more expensive than the generic and 2) and most importantly, the brand name is going to be exactly the same ratio of drug to inactives every time. Strictly controlled due to the patent. Generics legally only have to have a specific ratio and it can be anywhere from 80-110% of the active and the inactives will vary by manufacturer--there are lots of generic manufacturers all over the world. You never know what you're getting, because, for example, Walgreens changes who they get generics from all the time. My asthma medication is the generic--that's changed literally every month for the last three years. EVERY MONTH it's a different manufacturer. I never know what I am actually getting. (Not exactly comforting!) Part of the problem could be that you're taking a generic and not the real deal, therefore your body is not reacting well to whatever the percentage is (which will even vary by batch!) or the inactives.

IF the real Synthroid does not work for you, consider Armour if you can get it. It really does help a lot of people--not me personally. Keep trying with the doctors. I haven't had a lot of luck in the other doctors department but this one worked out well for me. I hope it stays that way.

The reason Synthroid is so widely prescribed is simply because it works the most often for the most people. But not everyone, obviously.
 

ame

Super_Ideal_Rock
Joined
Jul 7, 2004
Messages
10,864
Re: Does anyone else take Synthroid for an underactive thyro

sonnyjane|1446837138|3946361 said:
ame|1446829661|3946324 said:
Yea weight loss is a fiasco when you have low/no thyroid. My endo is a huge proponent of keto/low carb partly for weightloss reasons and partly because it tends to help hormonally with the absorption of the medication. Avoid soy at all costs. Little or no in your diet because your body cannot absorb the meds right--soy and thyroid issues are big.

This is what I'm struggling with. I don't eat meat and obviously one of the main substitutes is soy. I talked to my doc about it (she also specializes in weight loss and nutrition) and she said as long as I wait several hours after my pill and don't eat tofu every day or something crazy like that, it shouldn't be a problem. Who knows.
Soy is a huge issue. I was put on "Medifast" for a while--and guess what the main base ingredient is in all that--Soy. My levels were a DISASTER. I was a disaster. I had to quit it, because it was basically killing me. It took me almost 3 months to get it all out of my system and to get my levels stable again.
 

jazzoboe

Shiny_Rock
Joined
Feb 21, 2010
Messages
188
Re: Does anyone else take Synthroid for an underactive thyro

Ittybittykittykat said:
I haven't asked my doctor about cytomel because she just refuses to change my Synthroid. Any talk of symptoms and she tries to refer me to a psychiatrist "because I'm too anxious". I asked my pharmacist and he said doctors stopped prescribing it years ago. I will continue to look for a understanding doctor. Thanks for the advise!

I know this might be easier said than done, but please, please find a new doctor as soon as possible. The fact that your doctor not only won't change your medication, but blatantly ignores your symptoms or worse... is just completely unacceptable. Please don't suffer longer than you have to just because your doctor doesn't know what he/she is taking about. Too few docs really know how to treat thyroid issues, but it is so worth finding one who will actually listen to you. Good luck!
 
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