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Thyroid Meds & Weight Gain

bkane101
Posts: 35
Joined: Apr 2011

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???

LBlackman
Posts: 113
Joined: Mar 2011

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?

bkane101
Posts: 35
Joined: Apr 2011

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.

sunnyaz
Posts: 582
Joined: Oct 2010

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
Posts: 507
Joined: Apr 2010

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
Posts: 35
Joined: Apr 2011

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
Posts: 582
Joined: Oct 2010

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
Posts: 582
Joined: Oct 2010

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
Posts: 113
Joined: Mar 2011

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's picture
Baldy
Posts: 225
Joined: Mar 2011

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's picture
palmyrafan
Posts: 398
Joined: Mar 2011

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
Posts: 582
Joined: Oct 2010

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

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

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

sunnyaz
Posts: 582
Joined: Oct 2010

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

tron34
Posts: 1
Joined: Aug 2012

It does not surprise me at all that they will let their patients gain weight, as mine will not return a phone call to make an appointment. I had my tt almost 2 years ago, only had 1 of the 3 radioactive iodine treatment...and only one lab done for blood work :(.

TerriHam
Posts: 2
Joined: May 2011

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
Posts: 2
Joined: May 2011

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

bkane101
Posts: 35
Joined: Apr 2011

Julie,

Ironically it was the nurse practitioner at the weight control center who found the tumor in my neck and told me to go check it out immediately and low and behold it was cancer! So I know about taking Phentermine because I was taking it up until my diagnosis. I didn't think we can still take it while taking thyroid medicine? I did put a call into my doctor this morning because I'm not waiting any longer to get my dosage adjusted. I too weigh what you do now and I've now put on 12 pounds in just over a week on the medicine, but yet I'm still so exhausted I can't try to exercise to help some of this weight gain. I'm only on 88mcg's so I'm hoping he'll double it. Plus I'm still waiting for my scan results from last week so at least I can (hopefully) not have to worry about cancer anymore. But today I am feeling so depressed and I've been incredibly moody lately. Did you experience that as a side affect as well? And I don't sleep well at all and have panic attacks and anxiety attacks in my sleep and very weird and active dreams. I'm a mess!!!!

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

Just out of curiosity, what time of day are you taking your thyroid medication and what med are you taking?

I take mine when I wake up at 5:00 a.m. and then I go back to bed for an hour until my husband wakes up. I try to take all my meds by noon so it doesn't interfere with my sleep. I noticed that the later I took my meds the more trouble I had sleeping.

As for the weird dreams? I had those at the higher dose; especially when I started seeing neon signs as soon as I closed my eyes. I've never been to Times Square but I have seen it and that is what it felt like.

I also had the panic and anxiety attacks as well. That is what convinced the docs to lower my dosage and to allow me to take it early in the a.m. so I could at least work through it through the day and not have it affect my sleep.

Just an idea.
Best of luck to you,

Teresa

bkane101
Posts: 35
Joined: Apr 2011

Teresa,

I take the medicine 1st thing when I wake up....or if I wake up a little early I will roll over and take it and then go back to sleep because I have to wait an hour before I eat and sometimes I don't have that long before I leave and then I have a long commute to work and that wouldn't be good on an empty stomach. I am taking Levothyroxine and the doctor just increased my dosage from 88mcg to 125mcg so I'm hoping it makes a difference soon.

But if they lower your dosage doesn't that mean you'll have all the problems with weight gain and being tired? It seems like with these medicines you have to decide which problems you'd rather live with more!

Barbara

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

I also have to take my Levo on an empty stomach so I take it when I first wake up and then go back to sleep for an hour.

My dosage is 25 mcgs per day; but I still have my thyroid. It was almost destroyed during radiation therapy and now I am being treated for hypothyroidism. As for the weight gain, I have only gained 4 pounds in 4 months and that weight is probably due to the Prednisone I am also taking. I am being tapered on that med from 30 mgs a day in February to 17 mgs daily now. The docs want me at 7.5 mgs a day on the Prednisone and to stay at 25 mcgs per day on the Synthroid.

As for the Prednisone? I was put on Decadron by some resident who unilaterally decided that I needed to be on it when I was in the hospital and he heard I have brain cancer. Was switched to Prednisone due to Steroid Psychosis while on the Dec. Been weaning down ever since.

The meds have been playing havoc with my hearing. Some days I hear great and other days I can't hear at all. But, given the choice, I told the docs to save my vision and I'll learn sign language if need be.

Teresa

sunnyaz
Posts: 582
Joined: Oct 2010

So sorry to hear about your hearing. No pun intended. Because you have been hearing for so many years, you will be able to speak just fine if your hearing does take a turn for the worse. However, with the use of hearing aids you will probably be just fine unless it's a connection from the ears to the brain. It's kind of interesting that you mention the hearing loss because I have some issues with hearing also. I can mostly hear okay, but if there is a lot of different noises in a room or too many different sounds going on at the same time (such as in a crowded restaurant), I have difficulty understanding the person I am talking with. This started when I was a kid. My mom noticed that in loud places I would retreat to a corner or the quietest location and cover my ears with my eyes closed and head down between my legs. So..... knowing this, I took American Sign Language in college as my second language should my hearing ever deteriorate further. It has come in very handy in my career. Spanish would have been an asset as well, living in the southwest, but I wasn't really interested in Spanish. I just don't like the way it sounds. Had some bad experiences as a kid growing up "gringa" (white girl) in Tucson. I was actually a minority here. I was picked on because I moved from Upper Michigan, near Canada and I was really very white/pale. The Hispanic girls at my school hated me because I had long dark hair and very fair complected. I am not angry or prejudice against Hispanics, but I have developed a severe dislike to the language that they try to force down our throats. Anyway, my point is that Sign Language has been a valuable language for me and I highly recommend learning it even if you never loose your hearing. It's also really fun.
Blessings,
Julie-SunnyAZ

sunnyaz
Posts: 582
Joined: Oct 2010

Hi bkane,

Most NP's are awesome! I used to work for one and he knows more than most doctors I have worked with. Strange that your doctor would put you on an appetite suppressant before checking your thyroid levels first. That is the first thing we do at our clinic for each new patient.

I am exhausted too. I hate to say it but replacement hormone just isn't the same as having a thyroid. Even at 175 mcg's a day I just want to sleep but having trouble doing so. It's a no win situation. Depression and mood fluctuations are also a problem with me. I was generally a pretty happy person before my symptoms began. Before my diagnosis when I started feeling like crap, I was diagnosed with Bi-Polar disorder, Fibromyalgia and an assortment of other diseases that didn't make sense to me. I knew it all had to do with my Thyroid but my doctor wouldn't listen to me. Just because blood work comes back normal doesn't mean there isn't a problem. I had all of the classic symptoms of a non-functioning thyroid. My doctor just thought I was a hypochondriac. At least now he doesn't condescend to me like he used to. It's the "hah, I told you" concept I have to hold over his head. He actually takes what I say seriously now. I am able to call the office, tell him my symptoms, request the medication I need and they call it in for me with no questions asked. If I hadn't been in the Medical field and found my own thyroid nodule, who knows where I would be right now.

I take diazepam 5 mg's in the evening after work to relax and then I take an over the counter sleep aid about half an hour before bed. I just use the generic equivalent to Unisom. This seems to keep me out for eight hours a night. I try to not use the diazepam unless I feel really anxious because it is addictive. I still have some disturbing dreams but I don't usually remember them in the morning. Maybe twenty-five percent of the time I remember them in detail.

I think getting a higher dose of Synthroid is going to be good for your entire well being. Give it about two weeks to start really feeling the effects of the new dose. Remember that it takes T4 about two weeks to convert to TSH in your body. Ask your doctor for a prescription for anxiety and something to help you sleep more sound. It WILL make a difference in how you feel physically and mentally.

Keep me posted, you are in my prayers. By the way, I don't know your first name. Are you willing to share it on line?

Blessings,
Julie-SunnyAZ

bkane101
Posts: 35
Joined: Apr 2011

Julie,

Whenever I had my bloodwork done I never had any problems with my thyroid that showed up in my results. The only reason I knew I had cancer was from the lump and then the biopsy. The doctor decided to increase my dosage from 88mcg to 125mcg so today is my first day on the higher amount. I should be feeling immediately back to normal, right??? If only! One of my co-workers is on thyroid medicine because her thyroid doesn't work anymore and her doctor splits her dosage up to twice a day to prevent her from feeling tired towards the end of the day, which doesn't sound like a bad idea so I might ask my doctor about that when I see him next month. She also takes adreanal supplements which helps her body produce adrenaline so she doesn't crash and she has consistant energy all day long. Have you heard of that? Again that doesn't sound like a bad thing either.

Barbara

BellsAngel69
Posts: 102
Joined: Dec 2009

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 ass, 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.

Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

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
Posts: 582
Joined: Oct 2010

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
Posts: 102
Joined: Dec 2009

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.

LBlackman
Posts: 113
Joined: Mar 2011

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

bkane101
Posts: 35
Joined: Apr 2011

It seems like you're on a high dosage of the medicine yet you're still having weight issues? I'm only on 88mcg's and not only do I have the weight problems but I'm still exhausted and my moods and emotions are all over the place! So sorry to hear that your cancer has come back so many times! You have surgery each time or just radiation? Do they just remove lymph nodes or are the tumors other places? I'm still waiting for my scan results and I'm hoping they come back all clear, but yet I was told that mine was pretty aggresive.

nasher
Posts: 507
Joined: Apr 2010

myself I am on 200 mgs synthroid and 25 mgs cytomel (weight 300 LBS)

I am still showing most the symptoms of hypo-thyroidism though

they also have me on celexa 20 mg/day <--- Anti Depressant
the anti depressant seems to have stabalized my moods but i am still low on enegy and having problems looseing weight.

I am currently on my LID for my 1 year out scans but at least im getting thyroigen injections this time

as far as other extrem weight loss plans and such they have me going through the prep classes for barratric surgery since the docs all agree this is probaly the only way i will loose the weight.

remember if you loose or gain a significant amount of weight (say 10% of your body weight) you will probaly have to get your synthroid level adjusted.

@ Bkane101 - um 88mcg's sounds like a low dose to me... do you have any of your thyroid left or do you weight alot less than most of us.

Craig

bkane101
Posts: 35
Joined: Apr 2011

Craig,

I don't have any thyroid left and my weight is heavy for a girl now...170. I was 145 before my cancer diagnosis. My doctor just increased my dosage to 125mcg so I'm hoping things start changing a bit for me. I think they just started me out low to get used to the medicine but I'm glad he agreed to increase it.

Barbara

Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

Barbara,

I'm no doctor, but 125 mcg STILL sounds low to me. I've been at 175 mcg from the start and I'm hovering between 160 & 165 pounds, {I think they weighed me at 166 pounds when the endocrinologist set the dose.} My endo told me that he wanted me slightly hyperthyroidal. I haven't noticed any weight gain except immeadiately after my surgery when I was literally sitting around doing nothing.

Alan

sunnyaz
Posts: 582
Joined: Oct 2010

Barbara,

I agree with Craig. I think your dose needs to be more like 175 mcg's. There should be no reason to have you "get used to the medicine" since it's a naturally occurring hormone in your body. After a cancer diagnosis the goal is to keep you hyperthyroid for the first three years from your last diagnosis/recurrence. My TSH is .4 and that is where they want to keep me. Have you gotten your labs and found out where your TSH level is? At the 125 mcg dose you should have another lab two weeks after you started it to find out where your levels are. It will take that long for the T4 to change to TSH in your body. If you are not below 1 you should have your dose increased.

Blessings,
Julie-SunnyAZ

bkane101
Posts: 35
Joined: Apr 2011

(It's weird because I typed out a post a couple hours ago & I don't see it here so I'm trying to remember what I wrote!)
I do think the 125mcg is still too low. I was completely exhausted this weekend...again. And going to work and then coming home and still having to be mom to 2 girls is really hard! But yet should I be noticing a difference yet in 5 days? I know you've said it can take 2 weeks so maybe it will get better??? My doctor is not having me come back in until about June 17th for my labs and I have an appointment June 20th. A co-worker of mine that has thyroid problems told me there is no way that I can wait that long to have my labs done because at the rate I'm going I won't be able to function by then! I have no idea what my levels are right now. I'm thinking I might call my doctor next week and see if they can do lab work. This is all so confusing.

Barbara

sunnyaz
Posts: 582
Joined: Oct 2010

Yes, it takes two weeks for the T4 (levothyroxine ie. Synthroid) to turn to TSH in your body. There is no way to notice a difference or be able to tell from labs until that point. I know this is frustrating but you just need to hang in there. I still think that you needed to start out at 175 mcg's just from what you have told me. My doctor started me on that dose and got it right the first time. It is based on weight, age etc. I think that you and I are about the same age and weight within a few pounds and years.

I am hoping and praying that you will feel better soon. I know this is no real consolation but here is the reality. I am right where I need to be with my meds/TSH levels and I still have issues. On the weekends I take two hour naps and sleep at least ten hours a night to make up for only eight hours I get during the week. Eight used to be plenty of sleep for me. Now I wake up tired and never feel rested no matter how much I sleep. My TSH level is Hyperthyroid at 0.4. I realize that I will never be the same again. There should be a law that anyone without a Thyroid is able to go on disability because I just don't know how I am going to get through the next twenty years until I am able to retire.

Blessings,
Julie-SunnyAZ

bkane101
Posts: 35
Joined: Apr 2011

Julie,

I figure I should wait until I get my labs done, but yet since I've still got the lower dosage in me as well shouldn't I be feeling a little better by now? Not sure if I should call the doctor for labs or wait until next week. My boyfriend really wants it checked since I've basically "checked out" with him. I just can't deal with anything extra in my life right now and I dont' want to go anywhere or be around anyone right now. I just want to lay down and be home in my sweats. And I do agree about the disability...it's so hard to work!

One question I haven't asked...I have constant restless leg syndrome and it's really bad in my right leg and I've had it since right after surgery. It's horrible and it's really hard for me to fall asleep. I didn't know if this is a symptom of the fatigue or what but it's driving me crazy!!!

Barbara

sunnyaz
Posts: 582
Joined: Oct 2010

Hi Barbara,

It might be better to wait and see what the lab results are on the new dose first and then have it increased if you are still not within the range they want you to be. Then do labs again after the increase to be sure it is right.

I fully understand the "checking out" concept. Wish I could check out of my job right now. My boss, the Doctor, almost had me in tears today. Doctor's can be such *******s. I wanted to run out of there and never go back. Would love to go back to my old career as a business owner working from home, but the economy took a dive and I lost my business in 2009. Good thing I had the medical field to fall back on.

I am assuming the Restless Leg Syndrome started after your TT. That's pretty typical. I think I remember experiencing that before I started on the anxiety meds and the sleep aids. And I know I had it before my diagnosis when I was hypothyroid from the cancer. I would probably have the same problem now if I didn't take meds.

Maybe your doctor can prescribe something to help. You may need to try a few different medications before you find the one that works. There are two medications that are commonly used for RLS right now. They are Mirapex and Requip. Requip (generic name ropinirole) and Mirapex (generic name pramipexole), both originally used to treat Parkinson's disease. This class of drugs, called dopamine agonists, activates receptors in the brain that produce dopamine, a chemical that helps regulate movement and mood.

Here is a website that might help aslo.
http://www.helpguide.org/life/restless_leg_syndrome_rls.htm

I might be more inclined to try a natural remedy first and if that doesn't work, see your doctor about a prescription for Mirapex or Requip.

Take care and keep in touch. Let me know if you come up with anything that works for your RLS.

Blessings,
Julie-SunnyAZ

LBlackman
Posts: 113
Joined: Mar 2011

I have noticed my right leg has been very restless at night and gives me troubles too, but never associated it with thyroid problems....I weighed in at 172 and have been on 150mcg except for Sat & Sun I am on 175 mcg. I lose weight when I am on the Atkins and actually have more energy, I just can't do it until after my scan tomorrow. I had labs done today and once again, another "mis-communication" with my Dr. I asked about checking my vitamin D levels and the tech said she didn't have an order to do that so she asked the Dr. and she said that should have been checked all along and they haven't been doing it. I am so thankful for the suggestions from others on this page. I will have a whole list of questions for my Dr. I got two different instructions from two different nurses in her office as to what to do before my scan. After this scan, I plan to find a new Dr. probably at the Mayo Clinic....

nasher
Posts: 507
Joined: Apr 2010

The reason they go slow on increasing your synthroid dose is they do not want you to have the problems with excessive hyperthyroidism.

Darn it i cannot find my calculation for weight so I am making one from the normal dose

100-125 mcg/day for a 70 kg adult
1 kg = 2.2 lbs therefore 154 lbs

Barbara you said you weigh about 170 lbs so from what i have seen for people of that weight you should be roughly on 150-200 mcg/day

Synthroid builds up very slowly in the body and it take about 6 weeks to get to the new level where they can do the blood test and determine what your free T4 levels are at.

Another thing you should consider one of the side effects from too much synthroid is intolerance to heat and you mentioned you are in California and something about 110 F heat expected... being on too much synthroid would make it feel much worse.

for myself I am at 200 mcg of synthroid and 25 mcg of Cytomel (or the equivalent of 300 mcg total synthroid) and for my weight that is about right.

Another option you might have is ask the doctors about doing a synthroid and Cytomel trial to see if that controls your thyroid replacement better.

Cytomel takes about 8 days to build up to the full strength while synthroid takes about 6 weeks.

The ONLY problem I have noticed with Cytomel is if I miss a dose I notice it that day... if you miss a dose of synthroid you might not even notice it.

Be sure to check your calcium and vitamin D levels (being in California you might not have the vitamin D problems I have in Washington)

Good luck and keep us informed

Craig

bkane101
Posts: 35
Joined: Apr 2011

Craig,

I'm hoping that my dr does increase me up more towards the 200 mcg level. Yesterday I had to take a sick day because I could barely move and I couldn't even get ready to go to work. I was so exhausted and my body hurt so bad (hurt like dead arm/leg hurt...not pain hurt). Today I was able to get ready for work but now that I'm here I'm going downhill fast. I do get my labs done in 1 week and I hope to be increased next week. Don't know how long I can go on like this yet I know it is a waiting game but the doctors don't have to live in our bodies while we are going through this. I have been writing down things to ask the doctor on my next visit which is mid-June and one of them is asking about the Cytomel. I have been on my increased dosage of my Levothyroxine now for 2 weeks and I'm still not noticing a difference, in fact I think I'm getting worse.

As far as the heat...I am always really cold, which I think is worse when you are hypo. When it's 85 degrees out I think it's a nice day and barely warm and then I can wear short sleeves. If it's 75 I'm really cold and in long sleeves. I think this will help me this summer if I'm still having these problems.

You were also saying about increasing my medicine slowly as to not go into excessive hyperthyroidism but aren't we supposed to be kept hyper and not hypo since we had cancer? Although I haven't heard good things about being hyper either so I'm not sure if I'm looking forward to it or not.

Barbara

sunnyaz
Posts: 582
Joined: Oct 2010

Hi Barbara,

My Endocrinologist is keeping me hyperthyroid for at least three years after my last recurrence. He said that this helps prevent recurrence.

I am hoping things get better for you very soon.

Blessings,
Julie-SunnyAZ

bkane101
Posts: 35
Joined: Apr 2011

Hi Julie. You seem to have so much knowledge on all of this so I wanted to let you know that I had my TSH level checked and I'm still at 37.77. Isn't that REALLY high!? He increased me from 125 mcg's to 150 mcg's and said they would re-visit it when I see him again in a little over 3 weeks. This is such a long process and I don't notice any changes from when I was on 88 mcg's and put to 125 so I'm wondering if I will even notice anything with this small change. I know it will take at least 2 weeks to take affect. They are mailing me my lab results because I'm curious to see what else they tested for. I think I have an issue with my cortisol levels too.

Hope you're doing well.
Barbara

sunnyaz
Posts: 582
Joined: Oct 2010

Yes, you are VERY hypothyroid. My level is 0.4 and that is considered very hyperthyroid which is right where my Endo wants me to be. It's no wonder you feel bad. See if they can test your levels again two weeks after starting the new dose. Then go see the doctor at your three week appointment. You should be able to get a lab slip for just a blood draw and then you will have the results when you see your Endo. He can then adjust the levels again at your appointment. I am guessing you will need at least 175-200 mcg's daily, but that's just a guess. It should not take this long to get your levels straight. Yes, two weeks is the standard time for the T4 to change to TSH in your body, so you won't notice any difference until that point. I sure hope they get this straightened out soon for you. I will keep you in my prayers.
Blessings,
Julie-SunnyAZ

bkane101
Posts: 35
Joined: Apr 2011

Julie,

I just got my results also for my free T4 test and that was 1.2 which is in the "normal" range, but my TSH is 37.77 which is really high. They didn't test for T3. Isn't it weird to have one test come back really high and the other is normal? Guess I'm confused...and I think they should test for more things than just those 2.

Barbara

sunnyaz
Posts: 582
Joined: Oct 2010

Maybe your body just isn't processing the T4 and converting it efficiently. Did they test your antibodies? Maybe the antibodies are high and are throwing off the TSH. Maybe time to consult with a new Endo?
Julie-SunnyAZ

Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

Barbara,

How about your thyroglobulin and thyroglobulin AB? I seem to recall if your thyroglobulin ABs are high, they can badly skew other results.

Alan

nasher
Posts: 507
Joined: Apr 2010

um wow

the normal range listed for TSH Sensitive is (.34-5.6) uIU/mL the only times I have been above normal range is when i was going for a scan and off my thyroid meds or on thyrogen shots the doc wants to keep me in the lower than normal range... so i would definatly say something is wrong

teamwink
Posts: 97
Joined: May 2011

I have similar issues - I am heavier than I've been in 10 years, and I'm eating less and exercising a little more. I am barely fitting into my "fat clothes", those that I wore in the first trimester of pregnancy and after the baby came. My doc says my levels are normal so she is not concerned, but I feel like I'm spinning my wheels and I'm miserable dieting with no results at all. I've never had this problem, and I'm not sure how to address it in a healthy way - advice?

teamwink
Posts: 97
Joined: May 2011

I have similar issues - I am heavier than I've been in 10 years, and I'm eating less and exercising a little more. I am barely fitting into my "fat clothes", those that I wore in the first trimester of pregnancy and after the baby came (ladies who've had babies, you know what I mean!). My doc says my levels are normal so she is not concerned, but I feel like I'm spinning my wheels and I'm miserable dieting with no results at all. I've never had this problem, and I'm not sure how to address it in a healthy way - advice?

acdrunner800
Posts: 1
Joined: Jun 2012

I am having this same issue now and I'm so frustrated! I was diagnosed with thyroid cancer 3 years ago and had a total thyroidectomy, and I had very good endocrinologist at the time who has unfortunately left the state since then. He had explained to me that he wanted to keep my thyroid levels on the higher than average side, at least for the first 5 years after surgery, because it lowered the chance of the cancer recurring, and also because I have a history of depression, which is worsened by low thyroid levels. My new doctor seems to have different beliefs, and like your doc, she says she is not concerned because my levels are normal (according to her guidelines). Meanwhile, in the past couple of months, since she lowered my dosage, I've gained 15 or more pounds (I'm scared to weigh myself right now), and I've been dragging all day. Did you resolve your issues? If so, would you mind sharing how? I'm thinking I should find a new doctor, but meanwhile I feel like if I don't take care of this ASAP I'm going to keep getting bigger. It's so uncomfortable, I've never had this issue before either and I don't feel like myself! I've always been very healthy and good about exercising, and now I barely recognize myself. Please update me on your situation if you can. I hope you are doing better and can shed some light for me. Thank you!

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