ThyroidFilter: Whither to T3, or not T3? That is the question.
August 18, 2009 8:35 AM Subscribe
ThyroidFilter: Who out there (particularly those with Hashimoto's), after ditching T4-only therapy for either added synthetic T3, Thyrolar, or the natural stuff, now feels waaaaay better, comparatively speaking?
I know there's an ongoing debate about what works better (and how the establishment endocrinologists often go 'screw you', t4 only is the way - and let me tell you, that's what 95% of the docs I saw a few weeks ago at Mayo Clinic thought), but I personally believe that everybody should be able to try whatever's best for them if science has proven it actually does something. Obviously this is not always easy to do.
I have reasons for wanting to try this, but am wary of returning to the near-death-like state I was in when I was first diagnosed with Hashimoto's over 10 years ago, and my TSH was way the heck up near 65.
I've read stuff from folks like the 'Stop the Thyroid Madness' people, and there's Mary Shomon who's been dispensing thyroid advice for quite a while, plus scoured the other MeFi threads.
I don't know many people personally who have switched from taking just t4 to additional t3 or Armour/Naturethroid, so I'm wondering what y'alls experiences have been.
thank ye muchly, hive mind
I know there's an ongoing debate about what works better (and how the establishment endocrinologists often go 'screw you', t4 only is the way - and let me tell you, that's what 95% of the docs I saw a few weeks ago at Mayo Clinic thought), but I personally believe that everybody should be able to try whatever's best for them if science has proven it actually does something. Obviously this is not always easy to do.
I have reasons for wanting to try this, but am wary of returning to the near-death-like state I was in when I was first diagnosed with Hashimoto's over 10 years ago, and my TSH was way the heck up near 65.
I've read stuff from folks like the 'Stop the Thyroid Madness' people, and there's Mary Shomon who's been dispensing thyroid advice for quite a while, plus scoured the other MeFi threads.
I don't know many people personally who have switched from taking just t4 to additional t3 or Armour/Naturethroid, so I'm wondering what y'alls experiences have been.
thank ye muchly, hive mind
Response by poster: Levoxyl is what I take; it is T4 only.
posted by bitterkitten at 9:28 AM on August 18, 2009
posted by bitterkitten at 9:28 AM on August 18, 2009
I've been OK on Levoxyl. I will say, though, that a good doctor will be responsive to your complaints about feeling as crappy as you describe. Maybe, just as important as a new therapy, is an endocrinologist that gives a crap about your actual condition. Just a thought.
posted by Citrus at 10:32 AM on August 18, 2009
posted by Citrus at 10:32 AM on August 18, 2009
My endocrinologist was willing to try me on T3, but I found it didn't really add anything to the picture, so I'm now back on just T4.
posted by judith at 10:46 AM on August 18, 2009
posted by judith at 10:46 AM on August 18, 2009
My thyroid was completely removed (thyroid cancer) and I was put on Levoxyl. I was fine for a long time but over the next couple of years slowly developed a crushing fatigue. I was so dubious of the hysterical tone of the T3 ranting on the internet, and trusting in my endocrinologist, that it never occurred to me that it might be an issue for me. (I also had an autoimmune condition confusing the situation). Another doctor suggested adding Cytomel and the difference was immediate and stunning. Absolutely stunning. Within three days I was like a new person.
posted by HotToddy at 10:55 AM on August 18, 2009 [1 favorite]
posted by HotToddy at 10:55 AM on August 18, 2009 [1 favorite]
Best answer: I take natural thyroid, Westhroid now that Armour has changed, for these reasons:
I don't convert T4 to T3 well at all.
Without the T3 in natural thyroid, I had absolutely soul-crushing depression that was entirely resistant to treatment with other meds. The addition of T3 has done major good for my brain function.
I'm hypopit, so my thyroid isn't getting the signal to produce anything at all. One important thyroid peptide is calcitonin, which reduces bone loss by regulating calcium. (Remember the studies of osteoporosis that endos use to scare us off decent doses? Those studies were done on patients taking Synthroid.) Natural thyroid replacements contain calcitonin as well as T3, as well as the other thyroid hormones.
It would literally be over my dead body that I'd go back on a T4-only synthetic.
posted by vers at 11:15 AM on August 18, 2009 [2 favorites]
I don't convert T4 to T3 well at all.
Without the T3 in natural thyroid, I had absolutely soul-crushing depression that was entirely resistant to treatment with other meds. The addition of T3 has done major good for my brain function.
I'm hypopit, so my thyroid isn't getting the signal to produce anything at all. One important thyroid peptide is calcitonin, which reduces bone loss by regulating calcium. (Remember the studies of osteoporosis that endos use to scare us off decent doses? Those studies were done on patients taking Synthroid.) Natural thyroid replacements contain calcitonin as well as T3, as well as the other thyroid hormones.
It would literally be over my dead body that I'd go back on a T4-only synthetic.
posted by vers at 11:15 AM on August 18, 2009 [2 favorites]
Best answer: Thyroid disease runs (maternally) in my family--I'm the fourth generation to have it.
I'm also the (apparently somewhat) rare male diagnosed with hypothyroidism. I took Levoxyl/T4-only meds for about 13 years, during what should have been the prime of my life, ages 24-37. Instead of thriving, I gradually deteriorated, year by year, until at 37, I felt like an old man. I'd come to accept that pain, fatigue, and depression were just a normal part of getting older, and that at 37, I was pretty much washed up.
I switched to Armour thyroid about 14 months ago, and like the previous poster, it will be over my dead body that I switch back to T4-only therapy. If Armour or its off-brand equivalents became unavailable, I would try the T3/T4 synthetics, but honestly, I would travel to foreign countries to obtain natural thyroid extract-based meds if they became unavailable here.
Almost all of my symptoms completely resolved within about 8 months of treatment. Some of them resolved within days or weeks (like fatigue and pain--they were gone in a month). Depression took a bit longer, but eventually resolved without further Rx. I could feel the T3 working upon the 1st dose. I tell people that it was like I felt I was truly awake for the first time in years.
Good diet and exercise were imperative in my recovery--don't assume you won't still need those things for weight management and healthy energy. But strenuous exercise becomes a possibility again after proper treatment begins to take effect.
I do have Hashimoto's, and we (my doctor and I) aim for a dose that mostly suppresses my thyroid (a very low TSH reading, below the .4 that's the lowest on the usual .4 to 4.0 scale) in order to reduce the inflammatory response. It's not clear if this really helps the Hashi's aspect--my antibodies were still high last check. But there's no question that my health improved and I feel great again.
Do I think some people do just fine on T4 only? It certainly seems that some must. Are there people who NEED combination T3/T4 therapy? I have no doubt about it at all.
Yes, the people at "Stop the Thyroid Madness" and the associated Yahoo Group can seem a bit fanatical. And they are NOT friendly if you dare to disagree with their dogma. But it's easy to understand their strident nature after you experience what some of us have been through. And I have never received bad advice from those people (including the best way to figure out the best starting dosage and and how to titrate up to the right dose for you--when I ignored their advice, I suffered).
You really have very little to lose in trying a T3/T4 drug (as long as you don't persist at too low a dose for too long, which could indeed leave you feeling worse). So if you can find a doctor willing to prescribe, or you are willing to self-medicate (there are ~legalish internet sources for the drugs), I encourage you to give it a shot.
But...educate yourself, and be prepared to do battle with your doctors. Today's doctors seem to learn ONLY about T4 meds, so when you ask for T3/T4, you are taking them outside their comfort zone--and doctors do not like this. They also seem openly resentful when patients know more about their conditions than the doctors do. It's hard to point out their ignorance without offending them, so work on your diplomacy skills. Be willing to negotiate with your doctor (Can I please just try it for a month, and we'll do all the labs, and see if I feel better? Please??). Be ready to move on to a new doctor.
They, and pharmacists, will repeat ignorant claims about natural thyroid drugs, but don't buy it: natural thyroid extract is in the US pharmacopoeia, fully regulated and quality-controlled like all other drugs, no matter what your ignorant pharmacist or doctor tells you. They will be afraid to raise your dose, will act like you are crazy, will treat you like a hypochondriac, will tell you it's normal to feel bad all the time, that you just need a shrink, etc. Do not give in to them until you get what you want.
If they won't give it to you, be prepared to get it some other way. Holistic/naturapathic doctors (MDs who will practice complimentary therapies in addition to traditional medicine) are usually your best bet, and endocrinologists seem basically ignorant of anything that doesn't have to do with diabetes.
But I am not a/your doctor.
posted by ViolaGrinder at 1:54 PM on August 18, 2009 [2 favorites]
I'm also the (apparently somewhat) rare male diagnosed with hypothyroidism. I took Levoxyl/T4-only meds for about 13 years, during what should have been the prime of my life, ages 24-37. Instead of thriving, I gradually deteriorated, year by year, until at 37, I felt like an old man. I'd come to accept that pain, fatigue, and depression were just a normal part of getting older, and that at 37, I was pretty much washed up.
I switched to Armour thyroid about 14 months ago, and like the previous poster, it will be over my dead body that I switch back to T4-only therapy. If Armour or its off-brand equivalents became unavailable, I would try the T3/T4 synthetics, but honestly, I would travel to foreign countries to obtain natural thyroid extract-based meds if they became unavailable here.
Almost all of my symptoms completely resolved within about 8 months of treatment. Some of them resolved within days or weeks (like fatigue and pain--they were gone in a month). Depression took a bit longer, but eventually resolved without further Rx. I could feel the T3 working upon the 1st dose. I tell people that it was like I felt I was truly awake for the first time in years.
Good diet and exercise were imperative in my recovery--don't assume you won't still need those things for weight management and healthy energy. But strenuous exercise becomes a possibility again after proper treatment begins to take effect.
I do have Hashimoto's, and we (my doctor and I) aim for a dose that mostly suppresses my thyroid (a very low TSH reading, below the .4 that's the lowest on the usual .4 to 4.0 scale) in order to reduce the inflammatory response. It's not clear if this really helps the Hashi's aspect--my antibodies were still high last check. But there's no question that my health improved and I feel great again.
Do I think some people do just fine on T4 only? It certainly seems that some must. Are there people who NEED combination T3/T4 therapy? I have no doubt about it at all.
Yes, the people at "Stop the Thyroid Madness" and the associated Yahoo Group can seem a bit fanatical. And they are NOT friendly if you dare to disagree with their dogma. But it's easy to understand their strident nature after you experience what some of us have been through. And I have never received bad advice from those people (including the best way to figure out the best starting dosage and and how to titrate up to the right dose for you--when I ignored their advice, I suffered).
You really have very little to lose in trying a T3/T4 drug (as long as you don't persist at too low a dose for too long, which could indeed leave you feeling worse). So if you can find a doctor willing to prescribe, or you are willing to self-medicate (there are ~legalish internet sources for the drugs), I encourage you to give it a shot.
But...educate yourself, and be prepared to do battle with your doctors. Today's doctors seem to learn ONLY about T4 meds, so when you ask for T3/T4, you are taking them outside their comfort zone--and doctors do not like this. They also seem openly resentful when patients know more about their conditions than the doctors do. It's hard to point out their ignorance without offending them, so work on your diplomacy skills. Be willing to negotiate with your doctor (Can I please just try it for a month, and we'll do all the labs, and see if I feel better? Please??). Be ready to move on to a new doctor.
They, and pharmacists, will repeat ignorant claims about natural thyroid drugs, but don't buy it: natural thyroid extract is in the US pharmacopoeia, fully regulated and quality-controlled like all other drugs, no matter what your ignorant pharmacist or doctor tells you. They will be afraid to raise your dose, will act like you are crazy, will treat you like a hypochondriac, will tell you it's normal to feel bad all the time, that you just need a shrink, etc. Do not give in to them until you get what you want.
If they won't give it to you, be prepared to get it some other way. Holistic/naturapathic doctors (MDs who will practice complimentary therapies in addition to traditional medicine) are usually your best bet, and endocrinologists seem basically ignorant of anything that doesn't have to do with diabetes.
But I am not a/your doctor.
posted by ViolaGrinder at 1:54 PM on August 18, 2009 [2 favorites]
I'm on NatureThroid, which I quite enjoy (it's the same deal as Armour and Westhroid). I've tried several things, because I had some severe itching on both NatureThroid and Cytomel (T3 only), but eventually went back to NT because I can dissolve it under my tongue (which is actually a tactic for inuring yourself to allergens! Before I figured that out I took a lot of claritin).
I tried Levoxyl for a month and a half and it just did nothing for me. It was as if I couldn't process it at all. However, I have since learned that I was pretty iodine- and selenium-deficient, both of which are necessary for processing T4 into T3. You may be able to get some results just by picking up some supplements. I had to go to a workout-supplements store for the iodine (kelp), as for some reason none of the local pharmacies carried it. Iodine is very common in processed food, but if you don't eat much of that (and/or you have sea salt at home instead of iodized), maybe this could help you too.
Random fact, mixed with anecdote: T3 has a really short half-life in your body -- it's only like five or six hours. This can lead to (if you're taking T4 with supplemental T3) sort of a rollercoaster effect as regards energy, which made me personally a little nuts sometimes. However, if you try supplemental T3 and it makes you feel better, you can then try to get someone to prescribe you Armour or NatureThroid or whatever, because you've tried the major components (and it won't be so risky a change).
My doctor is a big ol' vitamin-loving California Integrative Medicine practitioner, so he actually went for the whole-thyroid pills first. Here's Armour's physician locator, which could be really useful.
The Stop the Thyroid Madness people seem well-intentioned, but they aren't necessarily well-educated on everything relating to thyroid problems. I mean, I understand how terrible it is to be denied medication that works for you (I was laughed at and told to get more exercise for years, because my TSH was still subclinical in those days), but veering so close to 'GO GET IT NOW! IT WILL FIX YOU!' is not so good.
posted by zusty at 9:57 PM on August 18, 2009
I tried Levoxyl for a month and a half and it just did nothing for me. It was as if I couldn't process it at all. However, I have since learned that I was pretty iodine- and selenium-deficient, both of which are necessary for processing T4 into T3. You may be able to get some results just by picking up some supplements. I had to go to a workout-supplements store for the iodine (kelp), as for some reason none of the local pharmacies carried it. Iodine is very common in processed food, but if you don't eat much of that (and/or you have sea salt at home instead of iodized), maybe this could help you too.
Random fact, mixed with anecdote: T3 has a really short half-life in your body -- it's only like five or six hours. This can lead to (if you're taking T4 with supplemental T3) sort of a rollercoaster effect as regards energy, which made me personally a little nuts sometimes. However, if you try supplemental T3 and it makes you feel better, you can then try to get someone to prescribe you Armour or NatureThroid or whatever, because you've tried the major components (and it won't be so risky a change).
My doctor is a big ol' vitamin-loving California Integrative Medicine practitioner, so he actually went for the whole-thyroid pills first. Here's Armour's physician locator, which could be really useful.
The Stop the Thyroid Madness people seem well-intentioned, but they aren't necessarily well-educated on everything relating to thyroid problems. I mean, I understand how terrible it is to be denied medication that works for you (I was laughed at and told to get more exercise for years, because my TSH was still subclinical in those days), but veering so close to 'GO GET IT NOW! IT WILL FIX YOU!' is not so good.
posted by zusty at 9:57 PM on August 18, 2009
FWIW, I've been subclinical for over 10 years, and neither Synthroid nor Armour helped.
posted by unknowncommand at 7:47 PM on October 19, 2009
posted by unknowncommand at 7:47 PM on October 19, 2009
This thread is closed to new comments.
Which ones have you specifically tried?
posted by majortom1981 at 9:24 AM on August 18, 2009