Thyroid Meds & Weight Gain

bkane101
bkane101 Member Posts: 35
I'm sure this is a pretty common problem but I'd like to hear others stories. Last Thursday (the 21st) I started on my Levothyroxine and have since gained 8 pounds in 6 days! Now I know it can take time for the body to adjust but to gain a pound or 2 everyday is not something I am willing to be patient with. I lost 90 pounds a year ago and am not about to put it back on. I am wondering if my dosage is too low. I'm only on 88 mg and when I read blogs and boards people are taking like 250 mg. Should I beg and plead with my dr for help ASAP or what if I took 2 pills instead of 1???
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Comments

  • LBlackman
    LBlackman Member Posts: 113
    weight gain
    I gained so much weight after they removed my thyroid and am currently on 150 mcg of Synthroid M-F and 175 mcg on Sat. and Sunday. I tried several diets and exercised regularly, everyone's body is different, but the only one that worked for me is the Atkins. My Dr's approved it as long as I would take a break from it a couple times a year. The first two weeks of the diet were miserable, but after that I had alot more energy than I had before. My Dr. won't let me take Levothyroxine, she said there was a big difference in it. Although she neglected to tell me that I should be on a low iodine diet before my whole body scans as the foods on the Atkins are mostly high iodine foods. My scan is coming up so I am eating normal and gainning weight abnormally, but as soon as it's over, I will be back on the atkins. Did you have a total thyroidectomy?
  • sunnyaz
    sunnyaz Member Posts: 582
    Hi bkane101
    It takes about two weeks for Thyroid replacement hormone to convert from T4 (this is the hormone you are taking) to TSH in your body. I know this is frustrating. I gained over fifty pounds before I finally convinced my doctor that something was wrong with my thyroid. I had lost about sixty pounds the year before and felt really good about myself. It was hard work and the weight just kept coming back. I felt like I was living a nightmare. I still have forty pounds left to loose to get back to where I was before my cancer. It's very difficult to loose weight once you have your thyroid removed, but it is not impossible. I was a slender, athletic woman of 134 pounds and only a size four before this began. Even though I am being kept hyperthyroid, I still have to work very hard to loose weight.

    I am taking 175 mcg's of Synthroid and I am 173 pounds. Your dose depends on your weight primarily. My Endo does not let me take the generic version because he says that the levels fluctuate too much. The name brand Synthroid is much more consistent. There are lots of drugs that are fine to take as generic, this is not one of them.

    Do not double your dose on your own! You can have some very serious side effects such as hair loss, heart problems etc, and then you will run out and your insurance will deny refills. Then you will not have medication and you will go hypo again. Stay on track and ask your doctor to test your TSH after two weeks and see where your level is. Then if it is too high, he/she will adjust your medication up and ask the doctor to have it DAW (dispense as written). The name brand will cost more, but well worth it.

    By the way, just for education and clarification. You are referring to the dosage as milligrams (mg) and that is incorrect. You are taking micrograms (mcg). If you were to convert your mcg's to mg's it would be .88 mg's or 88 mcg's. There are one hundred micrograms per milligram. I just want you to be aware so that when you are talking to your doctor or Pharmacist you will know the correct terminology. I am in the medical field and a lot of people make this mistake but it is important to be clear when it comes to medication dosage and instructions. Also, be sure you are taking it on an empty stomach in the morning. You should wait at least forty-five minutes before you eat or drink anything besides water.

    Hang in there, be patient and your doctor will get the dosage where it needs to be.

    Blessings,
    Julie-SunnyAZ
  • nasher
    nasher Member Posts: 505
    sunnyaz said:

    Hi bkane101
    It takes about two weeks for Thyroid replacement hormone to convert from T4 (this is the hormone you are taking) to TSH in your body. I know this is frustrating. I gained over fifty pounds before I finally convinced my doctor that something was wrong with my thyroid. I had lost about sixty pounds the year before and felt really good about myself. It was hard work and the weight just kept coming back. I felt like I was living a nightmare. I still have forty pounds left to loose to get back to where I was before my cancer. It's very difficult to loose weight once you have your thyroid removed, but it is not impossible. I was a slender, athletic woman of 134 pounds and only a size four before this began. Even though I am being kept hyperthyroid, I still have to work very hard to loose weight.

    I am taking 175 mcg's of Synthroid and I am 173 pounds. Your dose depends on your weight primarily. My Endo does not let me take the generic version because he says that the levels fluctuate too much. The name brand Synthroid is much more consistent. There are lots of drugs that are fine to take as generic, this is not one of them.

    Do not double your dose on your own! You can have some very serious side effects such as hair loss, heart problems etc, and then you will run out and your insurance will deny refills. Then you will not have medication and you will go hypo again. Stay on track and ask your doctor to test your TSH after two weeks and see where your level is. Then if it is too high, he/she will adjust your medication up and ask the doctor to have it DAW (dispense as written). The name brand will cost more, but well worth it.

    By the way, just for education and clarification. You are referring to the dosage as milligrams (mg) and that is incorrect. You are taking micrograms (mcg). If you were to convert your mcg's to mg's it would be .88 mg's or 88 mcg's. There are one hundred micrograms per milligram. I just want you to be aware so that when you are talking to your doctor or Pharmacist you will know the correct terminology. I am in the medical field and a lot of people make this mistake but it is important to be clear when it comes to medication dosage and instructions. Also, be sure you are taking it on an empty stomach in the morning. You should wait at least forty-five minutes before you eat or drink anything besides water.

    Hang in there, be patient and your doctor will get the dosage where it needs to be.

    Blessings,
    Julie-SunnyAZ

    Correct dose takes forever
    I still do not think I am on the correct dose but mine is alot closer than it used to be

    as of right now i am on

    200 mgs of Synthroid (Levothyroxine Sodium)
    -and-
    25 mgs of Cytomel (Liothyronine Sodium) (remember cytomel is about 4x as effective)

    my weight is 295 lbs

    oh and i was told 1 hour not 45 min...

    I am on generics of both types but since they are free to me (active duty military) i will take them instead of paying money for out in town perscriptions.

    right now from my most recent lab tests my
    thyroxine free is .97 ng/dL Normal (0.59-1.8)
    Thyrotropin is 0.040 Micro International units/mL Normal (0.34-4.82)
  • bkane101
    bkane101 Member Posts: 35
    LBlackman said:

    weight gain
    I gained so much weight after they removed my thyroid and am currently on 150 mcg of Synthroid M-F and 175 mcg on Sat. and Sunday. I tried several diets and exercised regularly, everyone's body is different, but the only one that worked for me is the Atkins. My Dr's approved it as long as I would take a break from it a couple times a year. The first two weeks of the diet were miserable, but after that I had alot more energy than I had before. My Dr. won't let me take Levothyroxine, she said there was a big difference in it. Although she neglected to tell me that I should be on a low iodine diet before my whole body scans as the foods on the Atkins are mostly high iodine foods. My scan is coming up so I am eating normal and gainning weight abnormally, but as soon as it's over, I will be back on the atkins. Did you have a total thyroidectomy?

    I did have a total
    I did have a total thyroidectomy. I never had thyroid problems but ended up with cancer so they took it out. But I know that my metabolism really sucked before and now it's even worse on these pills. I'll have to ask about not taking the generic. The energy seems fine and I feel almost "normal" in that aspect right now. I've been trying to get out and walk so I can start running again and doing spin classes again at the gym very soon. I was a preparing to run a marathon last year and did a 1/2 marathon so this thing about not having energy has not been easy on me but yet I know I can't just rush in and just start running 10 miles again. It's weird because when I was preparing for RAI and on the low iodine diet and off my thyroid meds I lost 7 pounds in a week when I thought I would actually gain because I was hypo. With summer coming and vacations, pool and beach I'm really not looking forward to being fat this summer and having it out of my control.
  • bkane101
    bkane101 Member Posts: 35
    sunnyaz said:

    Hi bkane101
    It takes about two weeks for Thyroid replacement hormone to convert from T4 (this is the hormone you are taking) to TSH in your body. I know this is frustrating. I gained over fifty pounds before I finally convinced my doctor that something was wrong with my thyroid. I had lost about sixty pounds the year before and felt really good about myself. It was hard work and the weight just kept coming back. I felt like I was living a nightmare. I still have forty pounds left to loose to get back to where I was before my cancer. It's very difficult to loose weight once you have your thyroid removed, but it is not impossible. I was a slender, athletic woman of 134 pounds and only a size four before this began. Even though I am being kept hyperthyroid, I still have to work very hard to loose weight.

    I am taking 175 mcg's of Synthroid and I am 173 pounds. Your dose depends on your weight primarily. My Endo does not let me take the generic version because he says that the levels fluctuate too much. The name brand Synthroid is much more consistent. There are lots of drugs that are fine to take as generic, this is not one of them.

    Do not double your dose on your own! You can have some very serious side effects such as hair loss, heart problems etc, and then you will run out and your insurance will deny refills. Then you will not have medication and you will go hypo again. Stay on track and ask your doctor to test your TSH after two weeks and see where your level is. Then if it is too high, he/she will adjust your medication up and ask the doctor to have it DAW (dispense as written). The name brand will cost more, but well worth it.

    By the way, just for education and clarification. You are referring to the dosage as milligrams (mg) and that is incorrect. You are taking micrograms (mcg). If you were to convert your mcg's to mg's it would be .88 mg's or 88 mcg's. There are one hundred micrograms per milligram. I just want you to be aware so that when you are talking to your doctor or Pharmacist you will know the correct terminology. I am in the medical field and a lot of people make this mistake but it is important to be clear when it comes to medication dosage and instructions. Also, be sure you are taking it on an empty stomach in the morning. You should wait at least forty-five minutes before you eat or drink anything besides water.

    Hang in there, be patient and your doctor will get the dosage where it needs to be.

    Blessings,
    Julie-SunnyAZ

    Thank you for all you info
    Thank you for all you info Julie. Since you lost a lot of weight too you can feel my pain! I'm wondering if I shouldn't take the generic. As I replied above to another poster I'm concerned with summer and beach season and vacation coming and not having anything that fits. I can't wear sweats when it's 110 here in California in the summer! I'm easing back into my exercising but from reading so many blogs and boards online I hear people saying they work out hard only to maintain all the weight that was gained! Doesn't sound fun at all. I really think my dose is way too low for me because my metabolism was horrible with my thyroid!
  • sunnyaz
    sunnyaz Member Posts: 582
    bkane101 said:

    Thank you for all you info
    Thank you for all you info Julie. Since you lost a lot of weight too you can feel my pain! I'm wondering if I shouldn't take the generic. As I replied above to another poster I'm concerned with summer and beach season and vacation coming and not having anything that fits. I can't wear sweats when it's 110 here in California in the summer! I'm easing back into my exercising but from reading so many blogs and boards online I hear people saying they work out hard only to maintain all the weight that was gained! Doesn't sound fun at all. I really think my dose is way too low for me because my metabolism was horrible with my thyroid!

    You are very welcome!
    It may be that you aren't on enough replacement hormone. This depends on your current weight. I am 173 pounds right now and taking 175 mcg's daily if this gives you any indication of where you should be. I would ask your doctor as soon as possible. They should be trying to keep you hyperthyroid after a cancer diagnosis for at least the first three years. As you loose the weight you will probably need to have your dosage adjusted as well.

    You are right, most people have told me that it is impossible to loose the weight without a thyroid. I am bound and determined to beat the odds though. I worked too damn hard to get to a size four before my diagnosis and I will die trying to get back there. I work for a doctor that specializes in weight control and have a few tips if you are interested.

    1. Eat an apple or at least half an apple about half and hour before every meal. The pectin coats the stomach and makes it harder to absorb fat that you consume.
    2. Eat your biggest meal of the day in the morning then slowly tapper off towards sundown. Don't eat after sundown. Water only.
    3. Water, water, water. Fat is water soluble. You will pee out fat that you are burning.
    4. Eat smaller meals more often. Don't eat three meals a day. Have breakfast, snack, light lunch, snack and small dinner.
    5. Your stomach is only as big as your fist. Don't eat any more food (condensed) than the size of your fist in one sitting.
    6. Don't ever starve yourself. If you feel hungry eat something until you are "just" satisfied. This keeps your metabolism from going into starvation mode. This is how the hCG diet works. The hCG (human chorionic gonadotrophin) is the chemical in pregnant woman that stops them from going into starvation mode. This way the baby gets as much nutrition as it needs. If you keep your metabolism moving it will keep burning fat and calories. Lots of people have used hCG to loose weight and it's been effective. However, as you probably already know, any weight loss program includes modifying your life style for good.
    7. Exercise daily even if it just a walk. Try to get your heart rate up to 80% of it's max capacity for your age for at least 20 minutes per day. Work up from there. Don't over work your body or you will not want to keep it up. Also working too hard doesn't benefit you any more than a simple work out that gets you sweating a little and gets your heart rate up to 80% not 100%.
    8. My doctor prescribes an appetite suppressant called Phentermine. Yes, it's the first part of Phen in the Phen/Phen diet that caused so much debate in prior years. None of our patients have had any bad side effects from the Phentermine 37.5 mg. I have decided not to use the suppressant because appetite isn't my issue. I am pretty well controlled in that area.

    I have been able to maintain my current weight for about three months and I haven't really been busting my butt to get to the gym because I am gone eleven hours a day with my job and drive time. Working for a doctor is time consuming. I try to fit in work outs and "me time" on the weekends. At least I know when I finally do get back to a size four, I will be able to maintain it more easily than I could before. I believe we can do this! I fully intend to beat the odds and I know you will too. Maybe after we succeed we should get meet and co-author a book for Thyroid cancer patients and weight loss.

    Blessings and healthy wishes,
    Julie-SunnyAZ
  • sunnyaz
    sunnyaz Member Posts: 582
    bkane101 said:

    Thank you for all you info
    Thank you for all you info Julie. Since you lost a lot of weight too you can feel my pain! I'm wondering if I shouldn't take the generic. As I replied above to another poster I'm concerned with summer and beach season and vacation coming and not having anything that fits. I can't wear sweats when it's 110 here in California in the summer! I'm easing back into my exercising but from reading so many blogs and boards online I hear people saying they work out hard only to maintain all the weight that was gained! Doesn't sound fun at all. I really think my dose is way too low for me because my metabolism was horrible with my thyroid!

    You are very welcome!
    It may be that you aren't on enough replacement hormone. This depends on your current weight. I am 173 pounds right now and taking 175 mcg's daily if this gives you any indication of where you should be. I would ask your doctor as soon as possible. They should be trying to keep you hyperthyroid after a cancer diagnosis for at least the first three years. As you loose the weight you will probably need to have your dosage adjusted as well.

    You are right, most people have told me that it is impossible to loose the weight without a thyroid. I am bound and determined to beat the odds though. I worked too damn hard to get to a size four before my diagnosis and I will die trying to get back there. I work for a doctor that specializes in weight control and have a few tips if you are interested.

    1. Eat an apple or at least half an apple about half and hour before every meal. The pectin coats the stomach and makes it harder to absorb fat that you consume.
    2. Eat your biggest meal of the day in the morning then slowly tapper off towards sundown. Don't eat after sundown. Water only.
    3. Water, water, water. Fat is water soluble. You will pee out fat that you are burning.
    4. Eat smaller meals more often. Don't eat three meals a day. Have breakfast, snack, light lunch, snack and small dinner.
    5. Your stomach is only as big as your fist. Don't eat any more food (condensed) than the size of your fist in one sitting.
    6. Don't ever starve yourself. If you feel hungry eat something until you are "just" satisfied. This keeps your metabolism from going into starvation mode. This is how the hCG diet works. The hCG (human chorionic gonadotrophin) is the chemical in pregnant woman that stops them from going into starvation mode. This way the baby gets as much nutrition as it needs. If you keep your metabolism moving it will keep burning fat and calories. Lots of people have used hCG to loose weight and it's been effective. However, as you probably already know, any weight loss program includes modifying your life style for good.
    7. Exercise daily even if it just a walk. Try to get your heart rate up to 80% of it's max capacity for your age for at least 20 minutes per day. Work up from there. Don't over work your body or you will not want to keep it up. Also working too hard doesn't benefit you any more than a simple work out that gets you sweating a little and gets your heart rate up to 80% not 100%.
    8. My doctor prescribes an appetite suppressant called Phentermine. Yes, it's the first part of Phen in the Phen/Phen diet that caused so much debate in prior years. None of our patients have had any bad side effects from the Phentermine 37.5 mg. I have decided not to use the suppressant because appetite isn't my issue. I am pretty well controlled in that area.

    I have been able to maintain my current weight for about three months and I haven't really been busting my butt to get to the gym because I am gone eleven hours a day with my job and drive time. Working for a doctor is time consuming. I try to fit in work outs and "me time" on the weekends. At least I know when I finally do get back to a size four, I will be able to maintain it more easily than I could before. I believe we can do this! I fully intend to beat the odds and I know you will too. Maybe after we succeed we should meet and co-author a book for Thyroid cancer patients and weight loss.

    Blessings and healthy wishes,
    Julie-SunnyAZ
  • LBlackman
    LBlackman Member Posts: 113
    sunnyaz said:

    You are very welcome!
    It may be that you aren't on enough replacement hormone. This depends on your current weight. I am 173 pounds right now and taking 175 mcg's daily if this gives you any indication of where you should be. I would ask your doctor as soon as possible. They should be trying to keep you hyperthyroid after a cancer diagnosis for at least the first three years. As you loose the weight you will probably need to have your dosage adjusted as well.

    You are right, most people have told me that it is impossible to loose the weight without a thyroid. I am bound and determined to beat the odds though. I worked too damn hard to get to a size four before my diagnosis and I will die trying to get back there. I work for a doctor that specializes in weight control and have a few tips if you are interested.

    1. Eat an apple or at least half an apple about half and hour before every meal. The pectin coats the stomach and makes it harder to absorb fat that you consume.
    2. Eat your biggest meal of the day in the morning then slowly tapper off towards sundown. Don't eat after sundown. Water only.
    3. Water, water, water. Fat is water soluble. You will pee out fat that you are burning.
    4. Eat smaller meals more often. Don't eat three meals a day. Have breakfast, snack, light lunch, snack and small dinner.
    5. Your stomach is only as big as your fist. Don't eat any more food (condensed) than the size of your fist in one sitting.
    6. Don't ever starve yourself. If you feel hungry eat something until you are "just" satisfied. This keeps your metabolism from going into starvation mode. This is how the hCG diet works. The hCG (human chorionic gonadotrophin) is the chemical in pregnant woman that stops them from going into starvation mode. This way the baby gets as much nutrition as it needs. If you keep your metabolism moving it will keep burning fat and calories. Lots of people have used hCG to loose weight and it's been effective. However, as you probably already know, any weight loss program includes modifying your life style for good.
    7. Exercise daily even if it just a walk. Try to get your heart rate up to 80% of it's max capacity for your age for at least 20 minutes per day. Work up from there. Don't over work your body or you will not want to keep it up. Also working too hard doesn't benefit you any more than a simple work out that gets you sweating a little and gets your heart rate up to 80% not 100%.
    8. My doctor prescribes an appetite suppressant called Phentermine. Yes, it's the first part of Phen in the Phen/Phen diet that caused so much debate in prior years. None of our patients have had any bad side effects from the Phentermine 37.5 mg. I have decided not to use the suppressant because appetite isn't my issue. I am pretty well controlled in that area.

    I have been able to maintain my current weight for about three months and I haven't really been busting my butt to get to the gym because I am gone eleven hours a day with my job and drive time. Working for a doctor is time consuming. I try to fit in work outs and "me time" on the weekends. At least I know when I finally do get back to a size four, I will be able to maintain it more easily than I could before. I believe we can do this! I fully intend to beat the odds and I know you will too. Maybe after we succeed we should meet and co-author a book for Thyroid cancer patients and weight loss.

    Blessings and healthy wishes,
    Julie-SunnyAZ

    weight gain
    I have tried everything and my endocrinologist is going to fuss when I go in to see her for my scan. They have had me hyperthyroid for five and a half years and with exercise, nothing seemed to work. I will have to find something else, I have clothes in my closet from a size 6 to a size 18. I love the beach and I have decided that I will still enjoy my activities outdoors. I know why I am heavy and that there isn't much I can do about it right now, but I won't give up. I'm taking each day as a blessing and try me best to lose it, hopefully after the scan I can do the atkins on and off and at least get to where I am more comfortable outside. Until them I am thankful to be alive....
    Lynne
  • Baldy
    Baldy Member Posts: 243
    LBlackman said:

    weight gain
    I have tried everything and my endocrinologist is going to fuss when I go in to see her for my scan. They have had me hyperthyroid for five and a half years and with exercise, nothing seemed to work. I will have to find something else, I have clothes in my closet from a size 6 to a size 18. I love the beach and I have decided that I will still enjoy my activities outdoors. I know why I am heavy and that there isn't much I can do about it right now, but I won't give up. I'm taking each day as a blessing and try me best to lose it, hopefully after the scan I can do the atkins on and off and at least get to where I am more comfortable outside. Until them I am thankful to be alive....
    Lynne

    Incredible
    I find it incredible that endocrinologists allow people to gain so much weight. To me, this is a glaringly obvious indication the dosage is incorrect. I'm lucky this hasn't been an issue for me so far, hopefully it won't ever be.

    Alan
  • palmyrafan
    palmyrafan Member Posts: 396
    Baldy said:

    Incredible
    I find it incredible that endocrinologists allow people to gain so much weight. To me, this is a glaringly obvious indication the dosage is incorrect. I'm lucky this hasn't been an issue for me so far, hopefully it won't ever be.

    Alan

    Weight Gain
    We had to find a 2nd endocrinologist who would listen to me and my special needs. The first one could barely speak English and he didn't want to listen to anything I said.

    We then got a recommendation from my family physician and Dr. Haenel not only listens to me, but acknowledges what I say and acts accordingly. When I told him that my dosage of 40 mcgs was too high, he and my family physician conferred and immediately lowered me to 25 mcgs a day. I have almost no ill side effects and my thyroid is performing beautifully.

    As for the weight gain? I have not had a problem with the Synthroid (I am taking the generic brand version) causing weight gain either. Could be because of the lower dose I am on.

    I was not aware that Synthroid could cause weight gain so I will make sure that I keep an eye on the situation. Thanks for the heads-up about it.

    Teresa
  • sunnyaz
    sunnyaz Member Posts: 582

    Weight Gain
    We had to find a 2nd endocrinologist who would listen to me and my special needs. The first one could barely speak English and he didn't want to listen to anything I said.

    We then got a recommendation from my family physician and Dr. Haenel not only listens to me, but acknowledges what I say and acts accordingly. When I told him that my dosage of 40 mcgs was too high, he and my family physician conferred and immediately lowered me to 25 mcgs a day. I have almost no ill side effects and my thyroid is performing beautifully.

    As for the weight gain? I have not had a problem with the Synthroid (I am taking the generic brand version) causing weight gain either. Could be because of the lower dose I am on.

    I was not aware that Synthroid could cause weight gain so I will make sure that I keep an eye on the situation. Thanks for the heads-up about it.

    Teresa

    Hi Teresa
    You must have some of your thyroid left to be on such a small dose. Did you have Thyroid cancer or were you diagnosed hypothyroid or with Hashimoto's? Just curious.

    Synthroid doesn't cause weight gain, it's the lack of it that causes the weight gain. The generic versions are fine for some, but my Endocrinologist won't let me take the generic due to variances in the dose from pill to pill. It's only slight but he's a bit of a stickler when it comes to that. It mostly effects those taking half a pill because sometimes there is more hormone in one half of the pill than the other half. It's not as evenly distributed within the pill. Synthroid brand is very consistent.

    Glad to hear you found a good Endo that listens to you. Sometimes they are few and far between.

    Take care,
    Julie-SunnyAZ
  • BellsAngel69
    BellsAngel69 Member Posts: 104 Member
    Weight gain
    I've been on Levoxyl since my TT in 2004 for HCC. I currently take 175 mcg six days a week and 1/2 tab on the seventh (lol, sounds kind of biblical). My weight has gone from 140 to 168. It swings up and down, and it sucks. I work out 5-6 days a week, bust my ****, and I still can't control my weight. My average weight has been 148-150. Now that might not seem heavy, but I'm 4'11'', so I feel like a fat, overweight cow. I hate it!!! And forget the damn holistic ****. It doesn't work. Your thyroid controls your metabolism and without it, meds keep you alive, but can't keep your weight down, unless you're taking to high of a dosage, which creates other medical issues.

    I'm on reoccurence #3, my 5th surgery since this all happened. My next surgery is Wed. I guess I can say I'm still alive, but damn, this sucks, for a cancer that's supposed to be 98% curable, I sure got the short end of the stick.
  • sunnyaz
    sunnyaz Member Posts: 582
    Baldy said:

    Incredible
    I find it incredible that endocrinologists allow people to gain so much weight. To me, this is a glaringly obvious indication the dosage is incorrect. I'm lucky this hasn't been an issue for me so far, hopefully it won't ever be.

    Alan

    Weight Gain
    Hi Alan,

    I gained most of my weight before I convinced my PCP that there was a problem. After my TT I gained a little bit more until the Synthroid kicked in. It's just been so hard to take of the weight that I put on in the six months before my diagnosis. The weight gain was my final inclination that there was definitely a problem. I have been able to maintain my weight fairly easily, just can't get the extra off as easily as I used to.

    Blessings,
    Julie-SunnyAZ
  • Baldy
    Baldy Member Posts: 243

    Weight gain
    I've been on Levoxyl since my TT in 2004 for HCC. I currently take 175 mcg six days a week and 1/2 tab on the seventh (lol, sounds kind of biblical). My weight has gone from 140 to 168. It swings up and down, and it sucks. I work out 5-6 days a week, bust my ****, and I still can't control my weight. My average weight has been 148-150. Now that might not seem heavy, but I'm 4'11'', so I feel like a fat, overweight cow. I hate it!!! And forget the damn holistic ****. It doesn't work. Your thyroid controls your metabolism and without it, meds keep you alive, but can't keep your weight down, unless you're taking to high of a dosage, which creates other medical issues.

    I'm on reoccurence #3, my 5th surgery since this all happened. My next surgery is Wed. I guess I can say I'm still alive, but damn, this sucks, for a cancer that's supposed to be 98% curable, I sure got the short end of the stick.

    Improper Dosage
    Hi Julie,
    Hi Bells Angel,

    This is all new to me, I just started Levothyroxine 11 weeks ago. You mention symptoms of too high a dose. I'm not sure what to look for. Before, you answer, I had the pleasure of speaking with a young lady who has Graves disease. For those of you who don't know, {not you Julie :)} Graves is caused by the body creating too much TSH which causes the thyroid to go hyper {well mostly, it's actually a little more complicated.} She wasn't too clear about all the symptoms she's suffering from, so I looked it up on Wiki when I got home. The list is as long as my arm and nearly all are symptoms of hyperthyroidism. Have either of you ladies or anyone else been on too high a dose? If so what were the symptoms?

    Alan
  • sunnyaz
    sunnyaz Member Posts: 582
    Baldy said:

    Improper Dosage
    Hi Julie,
    Hi Bells Angel,

    This is all new to me, I just started Levothyroxine 11 weeks ago. You mention symptoms of too high a dose. I'm not sure what to look for. Before, you answer, I had the pleasure of speaking with a young lady who has Graves disease. For those of you who don't know, {not you Julie :)} Graves is caused by the body creating too much TSH which causes the thyroid to go hyper {well mostly, it's actually a little more complicated.} She wasn't too clear about all the symptoms she's suffering from, so I looked it up on Wiki when I got home. The list is as long as my arm and nearly all are symptoms of hyperthyroidism. Have either of you ladies or anyone else been on too high a dose? If so what were the symptoms?

    Alan

    Dosage
    Hi Alan,

    I am on a high dose of Synthroid (175 mcg's)which causes low TSH. I know it's strange but it's the opposite of what one might think. The symptoms of low TSH levels correspond to the symptoms of hyperthyroidism. When your dose is too high or if you have Graves disease, symptoms include fatigue, heart palpitations, nervousness, insomnia, increased bowel movements, trembling hands, weight loss, muscle weakness, hair loss and anxiety. There may be more symptoms but these are the ones I am familiar with.

    Since my doctor is keeping me hyperthyroid for at least three years (supposed to prevent metastasis, haha!), these are a lot of my symptoms except for the weight loss, unfortunately:( I take sleep aids and Valium and still experience nightmares/night terrors every night. I have fluttering in my chest from the palpitations and muscle knots all over my body that get worse every day from the fatigue. I have at least three to five loose bowel movements per day and my hands shake very badly. I had to change jobs because my last job required me to do blood draws and my hands shook so badly that I wasn't able to hold a needle still anymore. I had to take a job that doesn't require me to do Phlebotomy. Luckily I can still give injections because that doesn't require as steady of a hand. If not I would have to change careers again.

    Blessings,
    Julie-SunnyAZ
  • BellsAngel69
    BellsAngel69 Member Posts: 104 Member
    sunnyaz said:

    Dosage
    Hi Alan,

    I am on a high dose of Synthroid (175 mcg's)which causes low TSH. I know it's strange but it's the opposite of what one might think. The symptoms of low TSH levels correspond to the symptoms of hyperthyroidism. When your dose is too high or if you have Graves disease, symptoms include fatigue, heart palpitations, nervousness, insomnia, increased bowel movements, trembling hands, weight loss, muscle weakness, hair loss and anxiety. There may be more symptoms but these are the ones I am familiar with.

    Since my doctor is keeping me hyperthyroid for at least three years (supposed to prevent metastasis, haha!), these are a lot of my symptoms except for the weight loss, unfortunately:( I take sleep aids and Valium and still experience nightmares/night terrors every night. I have fluttering in my chest from the palpitations and muscle knots all over my body that get worse every day from the fatigue. I have at least three to five loose bowel movements per day and my hands shake very badly. I had to change jobs because my last job required me to do blood draws and my hands shook so badly that I wasn't able to hold a needle still anymore. I had to take a job that doesn't require me to do Phlebotomy. Luckily I can still give injections because that doesn't require as steady of a hand. If not I would have to change careers again.

    Blessings,
    Julie-SunnyAZ

    Funny
    I'm on 175 mcg of Levoxly too, and don't have many of your symptoms. I do have night terrors and insomnia and bad muscle knots. I knew about the insomnia issues, but not the night terrors. It's awful. I won't take sleep aids, don't want to take another pill. Thus why I stay up half the night and am tired in the morning. I live on 5-6 hours of sleep and never feel rested.

    Sorry to hear you had to change jobs Julie. At least you found another job. They'e rare today.

    Keep your head up and carry on.
  • palmyrafan
    palmyrafan Member Posts: 396
    sunnyaz said:

    Hi Teresa
    You must have some of your thyroid left to be on such a small dose. Did you have Thyroid cancer or were you diagnosed hypothyroid or with Hashimoto's? Just curious.

    Synthroid doesn't cause weight gain, it's the lack of it that causes the weight gain. The generic versions are fine for some, but my Endocrinologist won't let me take the generic due to variances in the dose from pill to pill. It's only slight but he's a bit of a stickler when it comes to that. It mostly effects those taking half a pill because sometimes there is more hormone in one half of the pill than the other half. It's not as evenly distributed within the pill. Synthroid brand is very consistent.

    Glad to hear you found a good Endo that listens to you. Sometimes they are few and far between.

    Take care,
    Julie-SunnyAZ

    Synthroid
    Julie,

    I have hypothyroidism caused by radiation therapy in 1996 to the hypothalmus for brain cancer.

    I had 30 sessions of traditional radiation therapy, almost maxed out on it, and the radiation almost destroyed my hypothalmus (pituitary, thyroid, etc.). Interestingly enough, I didn't show any symptoms of issues with my thyroid until last September when I became dehydrated, didn't know it and ended up with a slew of medical problems that no one could diagnose until I was admitted for the 2nd time to a hospital via the ER in February. They were trying to figure out if it was caused by my brain cancer (tumors are everywhere) and they decided to start with my thyroid first and ran all the right tests.

    BTW, I did not know that you could "cut" the Synthroid in half. I will also talk to the doctor and/or pharmacist about giving me Synthroid instead of the generic. See if my doctor has heard anything about it. He has been practicing for over 30 years and he specializes in chronically ill patients and geriatric patients so if anyone knows, he will.

    I do know that the doctors want me on the lowest dosage possible and they have indicated that I will be on it the rest of my life. I'm glad that I tolerate it as well as I do; at least so far.

    Best of luck to you and to all,
    Teresa
  • TerriHam
    TerriHam Member Posts: 2
    sunnyaz said:

    You are very welcome!
    It may be that you aren't on enough replacement hormone. This depends on your current weight. I am 173 pounds right now and taking 175 mcg's daily if this gives you any indication of where you should be. I would ask your doctor as soon as possible. They should be trying to keep you hyperthyroid after a cancer diagnosis for at least the first three years. As you loose the weight you will probably need to have your dosage adjusted as well.

    You are right, most people have told me that it is impossible to loose the weight without a thyroid. I am bound and determined to beat the odds though. I worked too damn hard to get to a size four before my diagnosis and I will die trying to get back there. I work for a doctor that specializes in weight control and have a few tips if you are interested.

    1. Eat an apple or at least half an apple about half and hour before every meal. The pectin coats the stomach and makes it harder to absorb fat that you consume.
    2. Eat your biggest meal of the day in the morning then slowly tapper off towards sundown. Don't eat after sundown. Water only.
    3. Water, water, water. Fat is water soluble. You will pee out fat that you are burning.
    4. Eat smaller meals more often. Don't eat three meals a day. Have breakfast, snack, light lunch, snack and small dinner.
    5. Your stomach is only as big as your fist. Don't eat any more food (condensed) than the size of your fist in one sitting.
    6. Don't ever starve yourself. If you feel hungry eat something until you are "just" satisfied. This keeps your metabolism from going into starvation mode. This is how the hCG diet works. The hCG (human chorionic gonadotrophin) is the chemical in pregnant woman that stops them from going into starvation mode. This way the baby gets as much nutrition as it needs. If you keep your metabolism moving it will keep burning fat and calories. Lots of people have used hCG to loose weight and it's been effective. However, as you probably already know, any weight loss program includes modifying your life style for good.
    7. Exercise daily even if it just a walk. Try to get your heart rate up to 80% of it's max capacity for your age for at least 20 minutes per day. Work up from there. Don't over work your body or you will not want to keep it up. Also working too hard doesn't benefit you any more than a simple work out that gets you sweating a little and gets your heart rate up to 80% not 100%.
    8. My doctor prescribes an appetite suppressant called Phentermine. Yes, it's the first part of Phen in the Phen/Phen diet that caused so much debate in prior years. None of our patients have had any bad side effects from the Phentermine 37.5 mg. I have decided not to use the suppressant because appetite isn't my issue. I am pretty well controlled in that area.

    I have been able to maintain my current weight for about three months and I haven't really been busting my butt to get to the gym because I am gone eleven hours a day with my job and drive time. Working for a doctor is time consuming. I try to fit in work outs and "me time" on the weekends. At least I know when I finally do get back to a size four, I will be able to maintain it more easily than I could before. I believe we can do this! I fully intend to beat the odds and I know you will too. Maybe after we succeed we should meet and co-author a book for Thyroid cancer patients and weight loss.

    Blessings and healthy wishes,
    Julie-SunnyAZ

    Weight Gain
    Hi

    I had thyroid cancer surgery 6 years ago. I am taking Synthroid and my dosage was changed from 125 mmg to 112 mmg. I have gained weight, lost weight, and gained it back. I have gained the 20 pounds I lost in six months. My Endo knows that this has been my battle but will not increase the medication. I am older and post menopausal. I have been on many diets, exercise daily, have gone to a Nutritionist but to no avail. I started the new Atkins diet and as the Dietitian suggested, I am cutting the amount of carbs and no fruit because fruit converts to sugar thus complicating the weight loss process. I exercise everyday and always have. I wore a size 4 and now the 8 can barely fit me. I am so frustrated and unhappy with myself. I am glad that there are many of us with the same problem. Does anyone have any other suggestions to lose the weight? I am knowledgeable in nutrition and exercise. I have read postings by other thyroid patients stating that the new Adkins Revolution diet has worked and I'm hoping it will for me also.

    TerriHam
  • TerriHam
    TerriHam Member Posts: 2
    sunnyaz said:

    You are very welcome!
    It may be that you aren't on enough replacement hormone. This depends on your current weight. I am 173 pounds right now and taking 175 mcg's daily if this gives you any indication of where you should be. I would ask your doctor as soon as possible. They should be trying to keep you hyperthyroid after a cancer diagnosis for at least the first three years. As you loose the weight you will probably need to have your dosage adjusted as well.

    You are right, most people have told me that it is impossible to loose the weight without a thyroid. I am bound and determined to beat the odds though. I worked too damn hard to get to a size four before my diagnosis and I will die trying to get back there. I work for a doctor that specializes in weight control and have a few tips if you are interested.

    1. Eat an apple or at least half an apple about half and hour before every meal. The pectin coats the stomach and makes it harder to absorb fat that you consume.
    2. Eat your biggest meal of the day in the morning then slowly tapper off towards sundown. Don't eat after sundown. Water only.
    3. Water, water, water. Fat is water soluble. You will pee out fat that you are burning.
    4. Eat smaller meals more often. Don't eat three meals a day. Have breakfast, snack, light lunch, snack and small dinner.
    5. Your stomach is only as big as your fist. Don't eat any more food (condensed) than the size of your fist in one sitting.
    6. Don't ever starve yourself. If you feel hungry eat something until you are "just" satisfied. This keeps your metabolism from going into starvation mode. This is how the hCG diet works. The hCG (human chorionic gonadotrophin) is the chemical in pregnant woman that stops them from going into starvation mode. This way the baby gets as much nutrition as it needs. If you keep your metabolism moving it will keep burning fat and calories. Lots of people have used hCG to loose weight and it's been effective. However, as you probably already know, any weight loss program includes modifying your life style for good.
    7. Exercise daily even if it just a walk. Try to get your heart rate up to 80% of it's max capacity for your age for at least 20 minutes per day. Work up from there. Don't over work your body or you will not want to keep it up. Also working too hard doesn't benefit you any more than a simple work out that gets you sweating a little and gets your heart rate up to 80% not 100%.
    8. My doctor prescribes an appetite suppressant called Phentermine. Yes, it's the first part of Phen in the Phen/Phen diet that caused so much debate in prior years. None of our patients have had any bad side effects from the Phentermine 37.5 mg. I have decided not to use the suppressant because appetite isn't my issue. I am pretty well controlled in that area.

    I have been able to maintain my current weight for about three months and I haven't really been busting my butt to get to the gym because I am gone eleven hours a day with my job and drive time. Working for a doctor is time consuming. I try to fit in work outs and "me time" on the weekends. At least I know when I finally do get back to a size four, I will be able to maintain it more easily than I could before. I believe we can do this! I fully intend to beat the odds and I know you will too. Maybe after we succeed we should meet and co-author a book for Thyroid cancer patients and weight loss.

    Blessings and healthy wishes,
    Julie-SunnyAZ

    Weight Gain
    Hi

    I had thyroid cancer surgery 6 years ago. I am taking Synthroid and my dosage was changed from 125 mmg to 112 mmg. I have gained weight, lost weight, and gained it back. I have gained the 20 pounds I lost in six months. My Endo knows that this has been my battle but will not increase the medication. I am older and post menopausal. I have been on many diets, exercise daily, have gone to a Nutritionist but to no avail. I started the new Atkins diet and as the Dietitian suggested, I am cutting the amount of carbs and no fruit because fruit converts to sugar thus complicating the weight loss process. I exercise everyday and always have. I wore a size 4 and now the 8 can barely fit me. I am so frustrated and unhappy with myself. I am glad that there are many of us with the same problem. Does anyone have any other suggestions to lose the weight? I am knowledgeable in nutrition and exercise. I have read postings by other thyroid patients stating that the new Adkins Revolution diet has worked and I'm hoping it will for me also.

    TerriHam
  • LBlackman
    LBlackman Member Posts: 113

    Funny
    I'm on 175 mcg of Levoxly too, and don't have many of your symptoms. I do have night terrors and insomnia and bad muscle knots. I knew about the insomnia issues, but not the night terrors. It's awful. I won't take sleep aids, don't want to take another pill. Thus why I stay up half the night and am tired in the morning. I live on 5-6 hours of sleep and never feel rested.

    Sorry to hear you had to change jobs Julie. At least you found another job. They'e rare today.

    Keep your head up and carry on.

    symptoms
    I am on 150 mcg five days a week and 175 two days a week. I have all the symptoms as Julie, just weight gain vs. weight loss. The panic attacks are terrible and seem to worsen right before my cycle. I am 42 so I guess I am pre-menopausal, I don't know what would be worse to go into menopause or deal with these symptoms or have both going on at the same time. It affects my job performance as I am so exhausted by the time I get home I just go to bed. I am working a temp office job which ends this week. I started the LID today and my cycle....just praying that I can make it through the week and the five hour journey to SC to get my scan done. Just glad I don't have to stop my synthroid and go hypo until after I get to SC.....
    Everyone on here is an inspiration and gives me the will to keep going on and I am so thankful to have others who can relate to this situation....
    Blessing to all,
    Lynne