I am about to start replacing my cytomel with a time release form of T3. I read an article online by Dr. Lowe which said that cytomel is better than time release, which makes me nervous. My own Dr. doesn't like cytomel because of the ups and downs it causes with temperature, etc.
My dr uses a local pharmacy and compounds all T3 into time release for her patients. Even her office mgr is on time release T3 and is doing great.....and she is a hashi patient. I always tell her how jealous I am of how well she is doing.
It does save for all the ups and downs and stays consistent in the body.
At this current time there are no time-release or slow-release T3 formulas approved by the FDA in the United States (not sure about other countries). That's an important thing to denote. The reason is because a drug not approved by the FDA might not be up to safe standards and regulations. In other words, you could be getting and paying for pills that might either have variations from one pill to the other; might not have the right or adequate amount of med; or might have fillers that don't need to be listed in the ingredients. My understanding is that all this can and has caused problems for thyroid patients.
Hopefully, for the sake of those going through thryoid cancer who could use such a formula, that approval will come about soon. But that it's not there yet is probably for a significant reason - the bugs on these kind of meds still need to be worked out. In the meantime....play it safe.
Also, for the sake of your own health, please steer clear of websites, books and drs that would recommend unsafe therapy treatments.
I took my first round of time released T3 yesterday and I did pretty well on it so far. I definitely did not have any hyper symptoms and I took a second dosage before bed and I could still sleep. I did start getting hot and sweating in the evening, otherwise no side effects.
I am aware of the fact the the FDA has not approved the T3 SR but I trust my doctor and the compounding pharmacy he uses has a really good track record. I take estriol as well, which the FDA has not approved. Sometimes the FDA is a bit behind and we have to do the best we can. There are risks, it is true, but I am weighing the risks against the benefits and I think the benefits come out on top in this case.
So glad to hear that so far so good......yes I agree with taking the risks that our trusted doctors recommend. I know my dr is a highly reputable dr here in Florida and is an internal medicine dr. She would never recommend or us a medication that doesn't have proven results. The most important of all is if it works for you safely, and you can get back to feeling well! :)
Please keep me informed at how you do as I am contemplating the switch myself if I cannot get regulated better on my current medication. :)
I will keep you updated for sure. One thing I already notice is that I can take more T3 with the time released version, whereas with the cytomel I have to take less because it hits all at once. This is a good thing because I feel I generally need more in my system.
Which meds are you on right now? Armour?
I'm on a combination of T4 and slow-release T3 from a compound chemist. I have never tried cytomel so I don't know if it feels different. My doctor gave me the SR T3 because he says it gives you constant dose throughout the day, like a normal thyroid would. I take mine at 7:20am and 6pm. I do feel that it interferes with my sleep a bit...as in I sometimes stay up until 11pm...whereas before I used to go to bed around 9:30 -10pm. Also, I get some heart palpitations especially with my night dose (about 1hr after taking med), and my hair falls out more. I did feel more 'awake' the first 2 weeks on it but now I'm tired again.
I feel that the T3 has helped me in reducing depression immensely. So I'm happy about that :-)
Were you on cytomel before? Do you also take T4?
I also read Dr Lowe's website and also made me a bit concerned. I think Cytomel might be better in the sense that the T3 is not hanging around so much and your vitamins and food will not interfere so much. So, I'm kind of tempted to ask for cytomel instead..also because you can let it dissolve under you tongue....where as with my SR T3 you can't becuase it's a powdered capsule.
Yes I am on Armour, but having a hard time regulating my levels. I am still in die off mode of hashi's though, so that may be why it is so hard to regulate. My doctor wanted to put me on time release T3 with my synthroid when I first went to her and I asked for Armour. So I am not opposed to it if Armour ends up not working for me.....I really want it to though. :)
Most of all I just want what is best for my body and to get better.
'Wilson's Syndrome' is not a recognized condition. Here is a link to the American Thyroid Association for an explanation they felt necessary to put together because it gets mentioned so often when talking about thyroid disease:
ttmoni, I take 50 mcg of levo and 1 grain of armour with the T3. I will probably go off of the armour and stay on the low dose of levo, just to have some T4 in my system. When I took cytomel alone my T4 level went way down. I don't know if that is necessarily a bad thing but my doc said that there was probably some reason that T4 should be in the system other than making T3.
Last night I did have some trouble sleeping and had some anxiety. I had this with cytomel too, so I suppose this is something I will have to live with in exchange for the benegits of the T3 (energy, lack of depression, etc)
I did like taking the cytomel under the tongue, shame we can't do that with the time release T3. So far it doesn't feel that different from cytomel to me, which is good, I think.
I will keep you all updated with the T3 SR.
Laura what is "die-off mode"?
I am really interested in hearing about experiences with any form of T3. I have lost so much of my life listening to doctors tell me that I didn't need T3. I had TT in 1998, but 2002, I basically became a shell of who I was. Thank God that I now have a reputable, Harvard trained endo who believes in wellness, does enormous amount of continuing education! With addition of Cytomel, my brain awoke, my energy came back, unfortunately shortly after it started causing my heart to jump, so I eventually gave up on it, went back to synthroid only and gradually ran back down, memory gone, depression back! I have now started Armour (about 1 month ago). Initially had headaches and felt very tired, but after about 2 weeks as posts suggested that subsided. My energy has improved, my cognitive functions are better, but I am still trying to get adjusted and not sure this is the right thing for me, but I don't care what anyone says, I need T3. I am extremely frustrated with the medical community as new things are learned all the time, they DO NOT know everything. We are the best judges of our body and the only one who really cares how we feel!! Sorry to vent, its been a very long journey!
I am so glad you took the power into your hands and found a doctor so willing to help you. I really am so happy for you.
After finding what works for many - it now becomes a balancing and tweeking of the meds to gain optimal preformance. So many give up - before the system starts to adjust. Many just decide to live with symptoms that could have been banished - if they would have given themselves the time needed to adjust things could of been so much better.
Good Luck on your journey to getting your life back after your surgery. It will happen, it just takes a bit of time and patience knowing what's best for you as an individual thyroid patient and knowing how your body acts.
When you took the cytomel, how much were you taking and how were you doing it?
It could have been that you were simply not breaking up the dose throughout the day and therefor experiencing extreme T3 spikes (hence the heart palps). Could you ask to try cytomel again but split 3 times in the day? Just a thought. I hear you on the T3 thing. I have to have it.
I wanted Cytomel to work more than words can describe. The Dr. initially started me out at 1/2 of 25mg. which I tolerated for a short while then all of the sudden the heart Jumping not palpitations. I would feel pretty major jolts, so it scared me. I gave it up asked for armour, continued to bring my Synthroid down from 125 to 112. Then I when I went back to Dr asking for armour, he said lets try cytomel 5mg and divide in 1/2. Hesitantly I tried again, and actually divided into 1/4, within a couple of hours, my heart jumped again. I just couldn't tolerate it. I have an extremely sensitive system (and that is an understatement). I was even a little afraid to try armour, but desperate to have my life back and now know that my brain re-awoke after cytomel. I felt like the movie awakening. I felt as if I could have a happy productive future again.
As for the Armour he started me at 120mg, but after reading posts and getting feedback, I realized that was probably too high too fast. I did ultimately get through the initial headaches and fatigue. I now have to 1/2 the afternoon dose, because if I take the full 60mg, I feel hyper and have some comparitively mild palpitations (nothing like Cytomel.) I have put in a call to request blood work to see where I am at. I am a little confused as to whether to test 2 hours after taking the armour to get T3 levels or test without morning dosage.
I wonder about a small t4 (synthroid) in addition to Armour to try to get more consistency in levels. I missed one day and was shot the next!
Regardless, I know I feel better even with the swings, its hard to live depressed in a brain fog with no memory.. I just want anyone struggling to know, hang in there, you have to find what's right for you to awaken your brain. Do not give up, it has taken me YEARS! Also, I do believe its imperative to find ways to reduce your stress in order for your system to be acceptable to any changes you make.
I believe at most times T4 or T3 med alone is no good...so they should go by the blood tests...T3,T4 is used widly in the sports world for weight loss..and works great...but even they take it every 3-4 hrs,to stop spikes and make it more level..the half life on T3 is only a few hrs...where most sports people take it...12.5.....12.5...12.5.....etc...
but mostly its 25mcg's at a time..for a total of 100mcgs a day.. try to get scrored tablets,and break it up though the day for steady blood levels...this is why most other people use liquid...
I get some heart palpitations but not as bad as Kimemitch. Does anyone know if they will eventually stop? My dose of T3 through out the day is not that high (12.5mcg).
Does anyone have problem with the hair falling out? Does it stop? I used to get this when I had hyperthyroidism.
I seem to be getting really tired now. If you take T3 or Armour, do you have to take Cortisol too? Are you on cortisol forever if you start taking it? I'm going to know my saliva adrenal test results next week.
I actually gave Thyroid Extract (It's the Australian dessicated thyroid) a try and felt OK for 5 weeks, then felt awful.. the worst I've ever felt in my life!! and could go any higher. So, that's why I'm taking combination of T4 and T3 now. Also, I did take Hysone 4mcg x2 (cortisol) for 2 weeks and did feel very AWAKE, energetic, muscles were not as weak...but also had extreme dizzyness for about 4hrs and some itchiness...I had problems looking at my computer screen at work and was scared of driving...so I stoped taking it. I heard scary stuff about cortisol so I'm scared of taking it.
I have taken slow release compounded T3 since 2006. I take a split dose. I take 2/3 of the dose in the morning to get me through the day and I take 1/3 of the dose at night to be absorbed while I sleep and become active in the morning so I am wide awake and ready to go in the morning. The split dose works better for me than a once a day dose. My energy doesn't go up and then down when I split the dose. I stay more even when I take part of it in the evening before bed and the bulk of it in the morning upon waking.
You are not supposed have any acid reducers, Tums, Rolaids, acid controllers, anything for a sour stomach, antacids or anything that changes the acid in the stomach for four (4) hours before and after the dose of the T3. Did your doctor tell you that? Acid reducers, acid controllers, antacids, etc. will pretty much wipe out the effectiveness of the T3 and it is as if you never took it at all. You can not take them for up to 4 hours before the T3 or for 4 hours after the T3 if you want to have the T3 work properly. You flush your money down the toilet if you take acid controllers, antacids or acid reducers with T3 in your system.
Also, it is imperative to not have food in your stomach for four (4) hours before you take the T3 and then not eat for four (4) hours after you take the dose of T3. I take my dose first thing in the morning as my stomach is empty. I do not eat for 4 hours. At the end of the day I stop eating before bed. I take the T3 before bed. During sleep I am not eating so there is no problem with eating after the dose. If you eat a meal and take T3 it is like you never took the T3 and you have flushed money down the toilet as compounded T3 is rather expensive.
I go to a pharmacy that does compounding. I have 22.5 mcg caps made for me in slow release. They contain cellulose to slow down the absorption. I take two 22.5 caps in the morning and one 22.5 cap in the evening. Total 67.5 mcg daily
T3 has been shown to treat Major Depression, Clinical Depression, Unipolar Depression and Bipolar Disorder Depression. Currently the CDC is conducting further clinical trials ending in 2012 on T3 to treat Bipolar after other labs have already shown it is a successful treatment for Depression and Bipolar. T3 seems to hit something in the brain that causes people who have clinical levels of depression to feel a lift in their symptoms greater than that of big pharmaceutical drugs which is a significant find. Clearly T3 impacts the mood more than we once thought. T3 does more for us than just help us with Thyroid Disease. It also regulates our moods and prevents depression and suicidal ideation. I for one think that is a good reason to take T3 over something that is manufactured.
The reasons for T3 are complex and not completely understood yet. Scientists are just starting to unlock the keys to T3, but they do not yet understand T3. The new idea that T3 can be used as a standard treatment for Bipolar Disorder is a new and unique. What else can T3 be used for, but we don't know about it yet? What does the future hold for T3? It is pretty exciting to think about. We are only at the starting phase as the CDC begins to explore other applications for T3.
If you have trouble sleeping simply take Melatonin, a natural hormone and sleep aid. I take Melatonin and it makes me fall asleep naturally, simply with no hangover effect like you get from a commercial sleeping pill. I wake up clear headed and wide awake in the morning. Melatonin is natural and has no hangover effect like a sleeping pill does. It takes about 20-30 mins to start working and then it is lights out. I sleep like a baby. My sleep is deep and refreshing. If your energy rises due to T3 and you have sleep problems give Melatonin a try and see if you like it.
I do not have any problems with my heart rate. My blood pressure is as low as an iron man athlete. My hair is fine. It is not falling out. I still feel cold. I felt warmer when my dosage was adjusted up, but then I got used to it and went back to feeling cold again. I feel uncomfortably cold all the time.
My pharmacy does mail order to all of the US and various countries. They do compounding of T3 and lots of other medications if you wish to order from them. It can be hard to find a compounding pharmacy. Here is their info in case you want to compound or wish to compare compounding prices.
1525 Mesa Verde Drive East
Costa Mesa, CA 92626 USA
I, and 100s of 1000s others have taken a migraine medication for years that was effective, readily available in pharmacies and reasonably priced, UNTIL the FDA decided that because the formulation had come out BEFORE one of their new requirements, it had to either undergo expensive studies or be pulled from the market. Keep in mind there weren't any deaths or reports of 'bad' side effects, they just reviewed what had been 'approved' for specific conditions and what had not and Midrin just happened to be on the wrong list. A little research will show how many use/used it and depended upon it to be able to stop migraines and allow them to function to at least some degree.
Since the drug was available in 'generic' forms, and was so cheap, the manufacturers refused to spend the money on the studies and many of us now either have to have that medication compounded in a formulary pharmacy, or suffer debilitating headaches because the 'triptans' that are so positively touted simply do not work for many of us and have far more risky side effects than the Midrin ever did.
So, realizing the FDA is their for your protection is good, but don't automatically assume that just because a drug doesn't have the FDA's blessing that it is to be avoided. Conversely, NEVER assume that because the FDA gave their blessing the drug is 'safe'. Chantix, Paxil, and numerous others have FDA approval, but their side affects can be more dangerous than the condition they are approved to treat.
I was on a custom compound T4/T3 that was started in September of 20012.
What I began to notice is the capsules, some were filled tight and some had space in them (?) I also was having some tummy problems that were not going away...no matter what I tried.
My blood test for my FT's were not improving much, even though I was increasing the doses. I finally agreed to switch to Tirosint and a pill form of T3 that I can divine and take intermittently if I want to. I have been on this for a week....(so no report yet)
What happened when I quit the compound...was my tummy problems cleared up immediately! I was so surprised. I went to the pharmacy soon after to find out what was in the fillers they used in the capsules.
What I found out was, they use a gel type chemical to bind the T's so that as it travels though your gut it will release slowly . Something in that "gel" was responsible for my GI troubles! They also told me that they filled the caps by hand...so maybe that is not that best way if some are more full then others.
That was my experience and I will not be going back to that way of meds again.
I will work out other means.
No, Wilson's syndrome is not officially recognized, but Hashimoto's thyroiditis definitely is. I have suffered from Hashimoto's for several years. I was given "traditional" FDA-approved medication for years, and continued to spiral into a mess of symptoms and depression. I was gaining a pound a day, my muscles and joints ached so badly that I could barely walk down the hall, my hair was falling out in clumps, my face and hands were swollen and unrecognizable, I was so depressed I could barely function....I could go on and on for days. I found a new doctor and was so desperate that I drove 5 hours to see him. He is a believer in Wilson's syndrome and believed that I had it along with my Hashimoto's. He took me off of the horrible, FDA approved Levoxyl and started me on sustained release T3. Within a week, I felt like a black cloud had lifted off of my brain. All of my symptoms cleared up. I have been on the T3 for about 5 years, and have never felt better.
Im on sustained release t4. I happen to like it very much. The regular t4 converted too fast for me. I asked the compounder how it works. He told me that when you get sustained t3 or t4 they mix it with a powder. When this powder is ingested, it mixes with the liquid in your tummy and makes like a puddy. The puddy digests, but it just takes longer for it to make it through your blood and large intestine.
I also take my meds at night. This also helps with absorption. The digestive system runs much slower at night when you sleep so this again aids in absorption. But every person is different and finding what works for you is the most important thing. Listen to your body.
As I was reading I noticed that you are in Florida and seem to have a doctor that seems to have a better understanding of the thyroid. I have Hoshilotos and cannot find doctor that understands the disease. Would you mind if I asked what part of Florida are you in and who is your doctor? I refuse to settle for a doctor that thinks synthroid is the only cure and ones that have never heard of. Also, part of my regimen is T3 and I wold like to try the sustained release and of course my doctor has never heard of it.
Thank you in advance.
I am trying to convert from my regular T3 but am having a hard time. Could you please share with me the amount of T3 you took before the time released. What was the difference in the dose? I am hoping this will help me figure out how much approximately for me to take. Thanks mucho.
My name is LaDonna and just started T3 SR a week ago and have had a migraine going on at least 4 days now. Taking aleve and imitrex and still can't get it relieved. Should i stop the T3 or persist on? In a lot of pain with the headaches and can't tell a difference with the thyroid help yet. What to do? Dr. says stop to see if headache goes away but reading post, sounds like it is something that will go away???
Hi, I have Hashimoto's and have had 1/2 my thyroid removed. I am seeing a ND who is having me go through the Wilson Temperature Protocol. My temperature was continuously between 96.6 and 97.4. The Protocol purpose is to bring your temperature up. Because until that happens your Thyroid will not get going and do what it needs to do. The web sight explains the purpose and process. I was having incredible migraine headaches caused by sever muscle cramping especially in my neck, before I discovered all this and a friend recommended Magnesium. It's worked wonders before and through trying to find the amount of T3 that I need. When your temperature is too low, the body can not metabolize the nutrient that we need. Magnesium is water soluble so too much will only give you lose stool. I did not feel well and the Hypothyroid symptoms do not subside until my temperature stayed between 98.0 to 98.6. When I was there for a little while, I was able to reduce the magnesium, and the chill feeling I had all the time went away, my digestion started to work and my hypothyroid symptoms started to slowly fade away. I believe my body was finally able to utilize nutrients. I read somewhere that when the temperature is too low, it's not the right environment for the chemistry of the body to operate, thus the symptoms. I hope this helps. :)
I know your post was some time ago but I am looking for help on T3, I have been on cytomel for 10 years dosage 7am 25mcg, 12pm 12.5mcg, 4pm 6.25mc & 10pm 6.25mcg. I am still chronically ill, totally housebound and feel like my body over stimms and does not absorb the T3 - like it sits in my system bot does not go into the muscles - I am also on Hydrocortison due to severe adrenal dysfunction.
I am considering Timed release T3 to see if this helps my situation
I can not tollerate any T4 as I have Hashimotos with chronically high TgAbs and have to keep my TSH totally suppressed
Do you know if timed release keeps your TSh suppressed and I am also diabetic so need to eat breakfast so how would I dose in the morning
Thank you so much in advance and i do hope you can help
I don't understand why you you have to avoid T4 med. T4 is important, just as is T3. You do not have to go on T3 only to suppress TSH.
If your body is not getting the benefit of the T3 as you mentioned it may be due to pooling of T3. Note the following info.
What is Thyroid pooling? This is when the thyroid hormone T-3 collects or pools in the blood and does not get into the cells.
How does T3 Pool? The cause of T-3 pooling can be any one of the following or a combination of the following:
Iodinated contrast media
So, before further discussion, please post your thyroid related test results and reference ranges shown on the lab report. Also if tested for Vitamin D, B12 and ferritin, please post those as well. What tests were done for adrenal function that resulted in you being on hydrocortisone? Also, have you been tested for DHEA-S and if needed are you supplementing with DHEA-S along with the hydrocortisone, to prevent side effects?
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