Thyroidectomy and Weight Gain
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Why is the thyroid important?
What most people don't know, is that your thyroid is one of the most important parts in your body. I only discovered this, when I no longer had one. Your thyroid is a small gland located at the base of your neck just below your Adam's apple. Although small in size, it is one of the largest endocrine glands in your body. The thyroid gland consists of two small cone-shaped lobes roughly the size of your thumb nails. It lies against the trachea and larynx.
The thyroid controls how quickly the body uses energy, makes proteins, and controls how sensitive the body should be to other hormones. The thyroid regulates the metabolism rate in your body. So in other words, the hormones produced by the thyroid are directly involved in supplying energy to every cell in the body. This is over-simplified but how my doctor described it to me so that I could understand why it was so important for me to take my thyroid medication. Imagine if the cells in your heart and cells in your brain no longer received energy? What would happen to you then?
There are two main disorders of the thyroid that sound very similar but are quite different. Hyperthyroidism and hypothyroidism. Hyperthyroidism is an over-active thyroid which means your body produces too many thyroid hormones. This can cause an enlarged thyroid commonly called a goiter, protruding eyes, weight loss, sweating, diarrhea, palpitations and sore weak muscles. This tends to affect more women than men and can be an auto-immune disease called Grave's Disease. This is usually treated by the patient drinking radioactive iodine. Hypothyroidism is when the thyroid does not produce enough hormones and results in weight gain, palpitations, tiredness and lack of energy, baldness and intolerance to hot and cold. As you can see, neither are pleasant. In addition to these two disorders, one can develop nodules on the thyroid which are mostly benign and thyroid cancer which mostly affects women. You can also develop a goiter from an iodine deficiency or a bacterial or viral infection.
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My Thyroid Story
All my life I've struggled a bit with my weight, having to eat way less than anybody else to not pile on the kilos. Of course, to a twenty-something year old this was never fair. You just read the label on the food item and you put on weight. A couple of times over the years, doctor's had looked at my thick neck and thought I might have a problem with my thyroid. They took blood, but my thyroid hormone levels were always within the normal range so they never pursued it. In 2006, I developed an irritating cough. Every time i started to talk, I'd start to cough. This got worse and worse, until I was actually choking and unable to breathe when I spoke. As a teacher, gagging in front of the class with your eyes nearly popping out as you tried to breathe was not a good look. I went to my doctor who felt my neck, looked at my throat and thought that I had an enlarged thyroid. However, blood tests still put my thyroid hormone within the normal range. An ultrasound showed that I had tumors on my thyroid. A fine needle biopsy was inconclusive. I was referred to a thyroid surgeon to investigate it further. It was thought that somehow my cough was related to my thyroid.
The thyroid surgeon looked at the ultrasound of my thyroid and decided that he was only looking at the tip of the iceberg. He felt that the bulk of my thyroid was sitting in my chest. Nobody had checked my chest cavity before, as a thyroid doesn't usually belong there. When I'd had all my drama with breast cancer, nobody then had noticed a thyroid in my chest cavity. The MRI on my chest showed that my thyroid was severely enlarged, covered in large tumors, and the weight of it had caused it to drop into my chest cavity, pushing itself in between my heart and lungs and compacting on my trachea. In effect, it was slowly suffocating me to death. The surgeon said if it wasn't removed in the near future, I'd be dead within a year. Charming. He also said it was an hereditary disorder, and I've since found out my late uncle had a goiter removed when he was sixteen. Apparently, I'd been growing this thyroid since I was eighteen, hence the struggles to maintain an ideal weight. I did not have hyper- or hypothyroidism. My TSH levels were normal. Another doctor said it was an auto-immune disease where your thyroid fights itself and against the body. I was confused. I didn't appear to fit any of the textbook thyroid disorders.
The date for the operation was set. The surgeon said it would be a very tricky surgery, as if they damaged my vocal chords I wouldn't be able to speak again. Also, as my thyroid was so large he wasn't sure they'd be able to remove it through my throat. There was a good chance they'd have to crack open my chest cavity and remove it that way. He was also afraid that my trachea would collapse once the thyroid was removed and he warned me that there was a good chance I'd have to go into ICU after the op. With those encouraging words, I was ready for the surgery. The surgeon took eight and three quarter hours to remove my thyroid in a total thyroidectomy. He also had to transplant my parathyroid glands. He was determined not to crack open my chest, and rather persevered through a small incision he'd made on a crease on my neck. Eventually, he used obstetric forceps to remove my thyroid.
It took a while to get my TSH levels right in my body. The TSH is the different thyroid hormones your body needs to work. Since the operation, I have put on 20kg. When my levels are a bit low I get tired, lethargic, depressed and sometimes I get a tingling feeling on my face and leg cramps or back muscle cramps. When I feel good and energetic, then my TSH levels are too high. Then my nails break and teeth chip, and I get palpitations - a result of having too much thyroid hormone. So you have a choice. Low energy and good nails, or normal energy and broken nails. However, I'm not very good at taking medications and I often forget. When I don't take my thyroxine for a few days, my memory starts to go, I start to slur my speech and I feel very tired, it is almost an effort to sit up straight. Maintaining my weight so that I don't pile on even more kilos is a real challenge.
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Weight Gain
If you are scheduled for a total thyroidectomy be prepared for weight gain. Doctors will tell you that if you maintain your TSH levels you will not put on weight. Unfortunately, this is what science tells them should happen. In reality, this is not what happens even if you take your thyroxine diligently. For some reason, you still put on weight, you still get tired easily, even if your bloodwork shows that this should not be happening. Doctors will refer you to Weight watchers and other weight loss programs. You will be told to exercise to lose weight. But no matter how hard you try, nothing will work and doctors will not understand that and will make you feel as if you are not trying hard enough. For them you have enough hormones in your system so weight should not be an issue. Doctors will make you feel inadequate and bad about yourself. They will not accept that even with the right levels of TSH you are gaining weight. Your metabolism will never recover, even with thyroxine. I know that I sound negative, but this is the reality and you need to be prepared for it.
However, after the initial weight gain after the thyroidectomy, you can maintain your weight or slow down the weight gain by doing the following. Keep up an exercise regime. It won't make you lose weight but will stop you from putting more on. Cut down on the carbs and try and eat healthily. Once again, you won't lose by doing this but you won't be gaining so rapidly. The most important thing to do for you to be able to function properly, is sleep. You have to sleep a minimum of 8 hours a night. This definitely recharges your energy levels more than anything else. Someone once told me that it can take up to 5 years after a thyroidectomy for your body to return to a normal state. Plus your pituitary gland goes into overdrive thinking you still have a thyroid. Unfortunately there is nothing you can do until the pituitary gland returns to normal.
The tragedy is, is that people don't get what is happening to you. They associate being overweight with over-eating and not exercising. They don't believe you when you tell them that you watch what you eat and you have a regular exercise regime. They'll tell you that anybody can lose weight. People without a thyroid struggle to lose weight and that is the reality. Doctors don't even get it. They believe if you take your medication then you should not gain weight. The science of it doesn't fit with what really happens. Obviously, you thyroid is more important and does a lot more than even doctors know. After your thyroidectomy, even when your TSH levels are right, besides the weight gain you will still experience periods of low energy, memory loss, brittle nails, dry skin, muscle cramps, depression. There are many medical forums on the internet, where you'll find people who've had a thyroidectomy begging for advice on their weight gain.
If you have had a total thyroidectomy and have found something that stops weight gain and helps lose the weight, please post it here.
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ahhhh cindy, my friend . . . My good friend Jane, a retired teacher, had her thyroid removed. She also has the weight problem. Mine went out of whack back in the late 90's, I was miserable. My endocrinologist discovered the iodine used in CT/Scans set it off as I was having so many of them and other tests too that required contrast to be injected into my blood. It took about 6 months to get me back to normal. You take care wonder woman. x
I have been putting on weight and in the last 3 years find my neck thickening. Have been regularly doing thyroid tests but they keep showing normal levels.My voice has also been getting hoarser. Reading this account of yours quite disturbed me. I hope things continue to get better with time and you don't have to struggle so much. Good health to you. :)
I have been a nurse for a long time but never heard a story like that. It is amazing that it went undetected for so long. My step-daughter had to have her whole thyroid removed and it had just a small spot of cancer, but she has remained cancer free since. Her voice was abnormal for moths after the surgery. I am glad you are recovering well now.
I wondered what happened to our Cindy Vine. We missed your hubs.
I'm glad you came through the operation--that, alone is a feat, and I'm very sorry you're getting hassled about weight gain that you can't help. Stay healthy: Lots of rest, good healthy food, and exercise, and I think you will find that over time, your body adjusts and begins to self-regulate.
Ignore the (well-meaning?) doctors and friends who don't understand because they haven't been through it, as best you can.
Much love,
from Paradise.
Thanks guys! I'm relatively healthy now, the op was in 2006 Paradise, but because of the weight gain after the op my blood pressure has gone from being low to high. But, nothing a pill or two can't cure. Diana I'd say get someone to do an ultrasound on your thyroid, to me it sounds like a bit of a problem there.
Very informative article. Perhaps a tip to people who have minor issues with their thyroids. Many of my clients have thyroid issues to one extent or another and the standard thyroid tests that doctors get done by pathologists only give the slightest of indications as to whether the thyroid is healthy or not. As a holistic medicine practitioner, I generally prescribe Kelp tablets to be used. A word of warning though. IF you have a sensitivity or an allergy to Iodine, it would be better not to use Kelp as it is laden with it. Fish, most types(especially sushi) will also help to normalise the thyroid actions in the body.
Naturally, western medicine discounts this remedy but my clients have all benefitted from use. I would like to say I am not writing off western medicine but in many cases our bodyies respond better to natural methods rather than putting chemicals in our bodies.
Just a thought. Use it ,dont use it.
Thanks for the advice, Sean. Do you think kelp wil also help if you don't have a thyroid?
I read you hub with great interest because my mother suffered of thyroid and I am sure I have it. One doctor said I had an underactive thyroid and treated with scan and after scans but no tablets. After a lowng while now I haven't got anything wrong with the thyroids. I feelthat there is something wrong because I can feel a lump in my throat. Also, now and then, I feel like a pressure in my chest. I had a heart test and that was OK. Thank you for your lots of information.
Hello Hello, sounds to me like you need to be told why they were doing those scans!
This is an incredible story of misdiagnosis, so glad for you they found it in the end. Like you I have found I gain weight even with thyroxine and I still have my thyroid.
Until I was diagnosed 10 years ago I had never had a weight problem. I do try and take my tablets every morning but the lethargy gets to me anyway. Like you I have good and bad days and I really do try and look after myself with a good diet and exercise.
Good luck and better health to you, thanks for sharing your story, cindyvine.
Yes it will. Your thyroid plays a major role in your metabolism and normalisation of eating patterns. The kelp will still assist in those functions although the normal hormone secretion isnt there. But it may be adviseable to triple the recommended dose for the first month or so. It is also something you will need to continue taking in order to maitian a controlled metabolism
MPG, good luck with your thyroid!
Sean, will have to definitely try and find some kelp tablets here!
Hello Cindy,
Have you tried asking your doctor for T3? Many individuals have had thyroidectomy's and/or hypothyroidism and have lost all of the weight gain from adding T3 to the T4 they are taking. I am due for total thyroidectomy this month and I have already discussed the addition of T3 to my T4 supplementation. My endo agrees this is a great idea and wants me to stay slim. Also, did you workout prior to your diagnosis, or is this something new you have adopted since your surgery? My doctor told me taking my hormone on an empty stomach, a couple hours before eating is the most effective. I plan to take it at 4:45a.m., go workout at 5:00 - 6:15a.m. then get ready for work, eat breakfast around 8:30a.m. This also seems to work for many to keep the weight off. I am glad you came through your surgery well! hugs! Chrissy
Thanks for that Chrissy, I'll ask the doctor here. the problem is I live in Tanzania and the doctors here are not as advanced. But will definitely follow up on T3. Best of luck with your surgery!
Thanks for that Chrissy, I'll ask the doctor here. the problem is I live in Tanzania and the doctors here are not as advanced. But will definitely follow up on T3. Best of luck with your surgery!
You are most welcome. There are various combination therapies you can look into. My endo wants to start me on the Synthroid/Cytomel protocol, and tends to scuff at dessicated thyroid. I am including a link for you to take to your doctor in case he/she argues with you and tries to tell you T3 is not necessary. Good luck:)
Thanks again Chrissy! I've managed to make an appointment with an endocrinologist in nairobi and I'll be taking your advice and insisting on getting T3 as well!
ohh dear cindy
please forgive me for disagreeing with you
i am an endocrine surgeon and have performed from the simplest to the most complicated thyroidectomies
gaining weight after thyroidectomy is not at all acceptable
in order to supplement thyroxin patient is advised eltroxin or thyroid supplements so that they dont get hypo thyroid
weight gain may be anecdotal
we are running a department in a medical colege and i am a senior ass professor
so you need to believe me
Tinyteddy, I have an appointment with a top endocrinologist in Nairobi next week, and am hoping she will sort something out for me. I have only been given 200mg of Levothyroxine each day. On that I am getting tired, feeling demotivated and picking up weight. My feet also keep swelling with oedema. What do you suggest?
Cindy,
HI, forgive me, I just noticed somehting you posted. You are saying you are taking Levothyroxine? THis is the generic of Synthroid? Yes? I had my TT October 1st, have been on the brand name Synthroid,I do need a dose increase, but overall, have been ok. I hear more people have issues with extremem wieght gain and hypo symptoms on the generics due to the batch inconsistencies of up to or even exceeding 20%! The generics cost less, but consequently, you do get what you pay for at times. You may not be getting 200mcg's of Levo at all and that could be a huge part of why you are experiencing symptoms. Can you get the brand Synthroid or Levoxl or even Unithroid? That may make a huge difference for you. I'm sorry, I should have caught this sooner..
Chrissy, I'll see if I ca get it. prblem is, I'm in Tanzania and you don't always know where the medication comes from. You don't even need a script to get drugs! I saw a specialist in Nairobi, and she's put me on T3 as well, so we'll see if that helps!
My Surgeon and Endocrinologist have indicated NOT to look at online info. There is A LOT of MISINFORMATION out there and especially from those that are not Specialists or Dr.'s. This article is very discouraging and as a TT post op patient, I am unhappy about this article I stumbled across. I am delighted that screen name "tinyteddy" responded to this. I only came across this seeking ways to help loose and gain strength as I google it.
This was very interesting since I just had my thyroid removed four weeks ago. In fact a had a goiter so large that actually had to go through my chest wall. It was encouraging to know someone else was facing the same issues as I. My doctor did tell me i would loose weight so thanks for telling me what I assumed would happen.. weight gain. I have very nervous and scared to see how much weight I am going to gain since I am short 4' 11'' and already 168 without the thyroid problems. Post surgery I dont think I am really prepared for what I am about to experience ...especially if i dont take my medications.
Sorry Jolly, but I hope it helps to know that I experience the same symptoms and cindyvine and I'm not crazy, well educated and in the medical field..which I must say helped with getting this taken care of in a speedy way. I had some of the top surgeon, endocrinologist etc.
I had a sub-total thyroidectomy back in '95 or '96 and have been on Eltroxin ever since. It has worked for me all the indicators are fine. Going for more bloods in March just to keep tabs on it all. But so-far not had any problems.
Thanks for sharing this and for the info in the comments.
Love and peace
Tony
Jolly, I'm sorry that you found it discouraging. However, it is my experience. Pearl, hope it all goes well for you. Tony, will be seeing another endocrinologist in 2 weeks in Cape Town. Hope it gets right this time!
Hi Cindy and co, I had my thyroid removed in the 1990's due to cold nodules growing on it. My surgeon thought I was making a fuss about nothing - he had to apologize after surgery as the growth was as big as his fist and growing into my chest. He had left a small amount of the thyroid glad and the parathyroid glands so did not feel that I needed any thyroid replacement hormones. After about a year I had become so depressed and over weight that I was at times suicidal. A psychiatrist felt that thyroxine should be given and life started to look up a little. I have battled with weight ever since - I need to eat like a sparrow to loose weight. Interestingly my father, sister and paternal aunt have all had their thyroids removed for the same reasons! I am interested in the T3 idea and will discuss this witht my Dr next time I am there. This story may seem negative to some but boy is it great to know now that I am not alone and that others have the same issues and difficulties that I face. Thanks Cindy - how is your weight after adding the T3?
Cazoe, I haven't gained more weight but am seeing a new endocrinologist on Tuesday, so watch this space!
So how do I convince my Dr that I should see and endocrinologist? I haven't seen one since I had the thyroid removed - should I be??
Cazoe, just tell them straight out you want to see one. Tell them you're not happy with your meds and think you should be feeling better than you are.
This is a really useful hub. I found out last year that I had hypothyroidism. I am a nurse, and had all the symptoms of it, but didn't recognize them.
Susansisk I had mine for 27 years before they diagnosed it!
I was just diagnosed with four nodules - two with blood flow and one with macrocalcifications. I am scheduled for a TT but am reconsidering. Unfortunately, I am also a teacher and have been complaining of a sore throat and hoarse voice for years. I always have to drink when I eat. The doctors do not feel the two are related (since the largest nodule according to the ultrasound is 2.1 cm). They maybe right and I am undergoing an ENT procedure to rule out an esophagus issues.
I am 51 also just over 5'3" and 165 lbs and have had weight issues my whole life and eat less than most. I am really debating on rolling the dice, since there is less than 15% chance for cancer. I say that only because of the other health issues that I have. Sometimes, quality of life has to take presidence over quantity. I have had numerous surgeries, and the doctors alway downplay the recovery and the reality of the outcome. My surgeon did not mention any of the things I have found out. Fortunately, my endocrinologist did and has been wonderful.
Lynn, I started coughing everytime I started to teach a lesson. Some times I started to gag and it was quite embarassing. My thyroid was so large, it had dropped into my chest cavity, pushed aside my heart and lungs and was compacting on my trachea. My surgeon said cancer or not, I had to have it removed as I was literally suffocating to death. Let them check your chest cavity as well, as it wasonly when they checked my chest they found that the nodules were much bigger than showed up on the ultrasound of my neck!
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Great review about thyroid, well done, thanks
Thanks Adrian and Melbourne for popping in and taking the time to comment.
Hi Cindy
I am moving to Nairobi soon, and have a thyroid condition. Could you tell me which Endocrinologist you've seen and if they are any good?
thanks!
Hello
Thanks for this great account, I had a TT in 2007 as I had a papillary carcinoma. At first I lost some weight, I was hungry all the time and ate and ate without gaining weight! It was great apart from the heart palpitations whilst I was working out. Over the years my dose has changed from 100mcg to now 175mcg, i'm 25 years old. However I have been steadily gaining weight, I work out 3-5 times a week, and am consistently tired - I told my surgeon I really need 8hrs sleep a night and he said good, that's how much you should sleep anyway. I feel like he really doesn't listen to me - I'm going to ask him about T3. What's the difference between seeing an endocrinologist and a thyroid specialist surgeon?
Thanks
Sarah, the endocrinologist I saw in Nairobi was Dr Eva Njenga
Diya, the endocrinologist sorts out your hormone levels
Thanks for the info, makes sense! I have several thyroid nodules. Physician wants to do thyroidectomy and you gave me something to think about. I believe maybe needle aspiration, maybe the first step.Thanks for sharing your experience.
Tiphete, I would think they would do a fine needle aspiration first. Also, it depends on how big the nodules are. Good luck!
Hi I had my TT just over a week ago i have thyroid cancer and will need more treatment. Weight gain is something i'm very concerned about. I was always a bit chubby and then about a year ago I worked really hard and lost over 30lbs I'm so scared about putting it all back on. Any advice would be much apprechiated
Emma, how are they going to treat the cancer? Are they putting you on thyroxine?
Hi I had my thyroid removed February 2011, and have only had a small weight gain of about 4lbs, but I am suffering with upper chest pain which goes right across to my shoulders and neck and travels down my arms. I have not felt really well since the operation. I am sleeping a lot. I used to get up at 6am and start my day quite happily, but now I can sleep for 12hrs and still find it hard to get out of bed much before 9am. Going for blood test tomorrow.
Aussie, going for a blood test is good as you never know if these things you are suffering from are related to the thyroid surgery!
Cindy is 100% right in terms of what we patients are told, what doctors believe and what actually happens. I'm living proof.
After suffering with Graves Disease and a SEVERELY enlarged thyroid which was cutting off my airway, I had it removed in May of 2009. Since then, despite calorie counting, and daily cardio, I have gained more than 30lbs. I finally wised up and went off Synthroid in favor of at least trying desiccated thyroid/Armour. My very traditional (and old school) endocrinologist disapproved even though I advise him of my CONSTANT hypothyroid symptoms on thyroxine. Muscle cramps, hair falling out by the handful, weight gain, chronic fatigue- you name it, I had/have it. I finally ordered Armour online and chose to self medicate which I DO NOT ADVISE. However, it has given me at least some semblance of health. I can walk without joint pain, I've stopped gaining weight (though I still have a lot of difficulty losing any) and I am able to function semi-normally. The basics of this is that some people simply do not function well on thyroxine. We need BOTH T3 and T4 as our own natural thyroid provides. By and large, most doctors do not listen to their patients and believe we are either hypochondriacs or we are simply eating insane amounts of food and lying about it. Or both. My hope at this point is simply to find a physician to monitor me (via bloodwork) and continue my own journey of self education and treatment. Honestly, until I find a doctor who "gets it", I am kind of like those agents from the X Files- I trust no one. Still desiccated thyroid hormone/Armour has given me the most relief from my post thyroidectomy symptoms. I do know that being rx'd something like Cytomel in conjunction with thyroxine is beneficial for many patients as well, however thats like pulling teeth with some physicians as well. Personally, I think it's all about big business with pharmaceutical companies. There are thousands of us out there SCREAMING about the same symptoms, but no one believes us? Yea, right. It's just not lucrative to treat us correctly.
Savannah, I am soooooo with you on this! The doctors don't listen and there are some of us who don't do well on thyroxine alone!
Hi , i had my thyroid removed 6 months ago due to thyroid pappillary cancer stage 1 i have been on synthroid ever since right now my dose is 136mcg. I have gained 20 pounds regardless of exercising 2 hrs a day and watching what i eat , i am going to my endo tommorow to discuss about adding T3 supplement to my T4 . I have my fingers crossed , i dont want to be overweight anymore i dont recognise the woman in the pics i see :( If anyone has any advice tried and true about how to lose weight it would be appreciated. I agree totally with all of you docs dont really listen you have to make them listen by constantly bothering them and being your own doc , research , research , research !
Loren, the bad news is that the doctors don't listen to you. They check your blood levels and medicate you according to that. They don't seem to understand that it is more than just the blood levels and that some people pile on the weight even if their blood level appears to be right!
My thyroid was removed on 10 August 2011 as it was found to be full of cysts, the biggest being 3cm in diameter. Blood tests showed nothing, but ultrasound revealed all, needle biopsy showed they were benign. I had trouble swallowing and coughed lots. Have been on Thyroxine since the op, and I must be one of the lucky ones. I watch my diet and exercise daily as I have osteoarthritis and will be having total left hip replacement in four weeks or so, but actually have lost a little weight since the thyroidectomy. Am grateful to people for taking the time to comment on their experiences. I was told to take my medication at least 1 hour before food in the morning, and I find that works well. I cut up the sheet of pills (keeping them in the fridge) and remove one at night and leave on bedside table with bottle of water to take first thing in the morning. I've got myself into automatic mode now, so don't forget. I am still however, taking calcium every day. Found out that it's best to take calcium after food and that other medications must be taken at least two hours before of after the calcium. The low calcium occurred after the thyroidectomy. Hang in there guys.
Carole it is fantastic that you have had a positive experience!
I had my thyroid removed due to Graves. I gained most of the weight,over 20 kgs, during the 18 months I took medication to try to control the thyroid, but I haven't taken it off since. In fact, I've gained about 6 kgs over the past year. I was never overweight in my life prior to Graves and it makes me feel very self-conscious.
Torontoguy, the extra weight is difficult to shift. I'm wondering if I should just get mine sucked out!
WOW please tell me some good news. Had mine out in November due to cancer. Radiation in March. The doc said when the level of synthroid is right the weight will come off. I was counting on it. Now after reading all this I am terrified I wont lose the weight!!
Laura, each person is different and some do not gain weight. Here's hoping that you are one of them!
Hi I had my thyroidectomy in July after my thyroid was pushing against my trachea .. I had problems breathing , eating you name it. I remember the biopsy Dr. telling me My thyroid was the size of a lemon on one side...and it felt like a grapefruit.Levels were all normal prior to surgery but Endo said I was probably going into thyroid storm at some point. I have gained 20pounds since surgery and despite my efforts I continue to feel like crap .. Sometime I wish I would have kept my baby in my throat as I have named it. (My goiter was like a pregnancy especially after the Biopsy Dr. said I had fluid (calcium deposits) in there) really like now I have had a c-section on my neck. haha Thyroid issues are the pits but knowing that Im not the only person who has been through this helps.. I did find a forum where another thyroidectomy patient started a HCG weight loss plan .. all that hormone taking scares me though but a 20 pound weight gain in 3 months makes me think Im pregnant..twins this go round and not to mention the issues with vitamin D deficiency that some people have after surgery I went in for a check up and told my Dr look I feel worse and turns out my parathyroids are damaged and I had no vitamin D in my body does it ever stop WOW!
Alicia, thyroid surgery is life-changing for many of us as we battle with weight issues and other strange symptoms. Since removing my thuroid I struggle with cramps, not just my legs but my abdomen and back as well, and a fluttering feeling on my face and my feet and ankles swelling up, oh and migraines. But if you tell the doctors your symptoms, they check your blood, tell you everything is normal and ignore the symptoms. I also wish they'd never removed my thyroid!
as I read your original post, Cindy, I started to cry...had my thyroid removed in February 2011 (pap. carcinoma found), and have been mostly fine (slight weight gain, even with increased workouts, so that's a bummer, but tolerable), but lately i've been exhausted beyond comprehension. like, I come home from work and lie down with all my work clothes on and fall asleep. or I work for an hour in the garden, and have to come in and go right to sleep. my last bloodwork indicated everything was normal, but clearly it's not. and now I'm thinking those cramps in my back aren't just normal fatigued muscles, but maybe hormone related. heading to a new doc at beginning of December and hoping for some relief. Do you know what I should tell her to look for? Is the exhaustion due to too much or too little Synthroid? What are people's experiences with adding T3 or is it T4? My prior doc said it wasn't important to add the second component...
All of your posts have been very enlightening. Had cancer, removed thyroid Sept 2010 Radiation Feb 2011...I was feeling ok but lately I feel too keyed up, jittery, a bit anxoius at times and experence sleeplessness...my body is exhausted, but my mind and insides are all jumpy. I alternate between 112mcg Synthroid and 125mcgs...sometimes I wish I was Tired!
Nancy, you don't want to get the exhaustion because some of us don't get tired it goes beyond that!
Clementina, am not sure what to tell you. The T3 has helped me. Before I used to feel absolutely exhausted by 2pm, now it's 8pm so at least I can function properly at work. The problem is that the doctors base everything on bloodwork not on symptoms and just dismiss the symptoms if your blood is okay. The back cramps are definitely a part of it. Please let me know what your new doctor says!
i dont think you can take kelp along with underactive thyroid medication
Hi I had my thyroid removed in 2005 and was put on synthroid I have been on that four years it does work I just recently switched to armour thyroid it works great I feel normal still have trouble losing weight but I feel like I can lose it now. If you have no thyroid my advise is to go on a thyroid medication that has t3 and t4 it's the best.
Margaret,you might be right but what about eating sushi with the seaweed that's used?
Tashma, I agree I think a combination of those two is best, so why don't doctors prescribe it at the outset?
I just went for my sono and blood tests today....I know my T4 is very high. Sono results tomorrow.
Hello Cindy, thank you for your post. i'm a little confused about the T3 replacement. i had my thyroid removed three months ago (due to Grave's) and have been on T4 (taken in the morning). i have not been feeling well at all (low energy/ brain fog / weight gain etc etc)even though my blood are ok now. My doctor has prescribed me T3 to take on top of my T4. He said to take it in the morning then changed his mind to say i should take it at lunchtime. Does it give you more energy straight away? Does it only stay in your system for a few hours after you take it? Any feedback much appreciated!
Hope it all went well Michelle!
Heath, the T3 is strong and fast acting and lasts a short time, whereas the T4 is slow-releasing, not as powerful but lasts longer.
Cindy, thanks for this article. Like others, I'm amazed that nobody caught your special thyroid condition for such a long period of time.
Though, I have to admit, your story and experiences post-thyroidectomy haven't exactly instilled confidence into me. In fact, I was pretty depressed after listening to what could happen to me if I go through with a thyroidectomy.
I'm curious to get some of your feedback (by 'your', I mean, Cindyvine and others on this board) about my situation. Two weeks ago, I noticed a lump in my throat. It literally grew out of nowhere. Some days it seemed to get smaller, others it got larger. The past few days it remained larger and started to feel more solid. Sneezing would cause me discomfort and I couldn't yawn fully without being on the receiving end of pain.
After bouncing back and forth between my general practitioner and a thyroid specialist/surgeon, the specialist recognized that the lump in my throat was a cyst filled with 'old blood'. One small syringe and two large syringes filled with old blood later, the cyst was gone.
The specialist then proceeded with local anesthesia and a biopsy on the nodules that were found on both lobes of my thyroid (this was all this morning, by the way. So, I'm still jumping through hoops, so to speak). After all of this, the specialist then told me what I had dreaded hearing all along: "You'll probably need a total thyroidectomy."
I was somewhat baffled since he didn't even suggest, first, that I should perhaps try taking medicine to shrink the nodules. After reading stories online, though, it sounds like a lot of people dive into surgery without taking meds first.
I'm still waiting for my biopsy results, which should be in later this week (just in time for the Christmas weekend!). I definitely want to spend this holiday break weighing my options and doing more research.
What I want to ask of all of you... do any of you know if it's possible to shrink nodules through synthetic or natural thyroid hormone treatments? Is there any way to avoid surgery in my situation?
I tell you what scares me the most in all of this: being hooked to a pill the rest of my life, having trouble losing weight, and not being able to enjoy all the foods (even in moderation) that I currently love because I'll be without my thyroid. All of these things scare me more than the actual surgery and I'm not sure if that's wrong or not. :)
Anyway, sorry for such a long post. Thanks for reading and I thank you all for being so open to one another on this comment thread.
P.S. One last thing that worries me about my current situation: my specialist, after draining my cyst, stated that it would more than likely refill itself and might very well become a chronic thing. Only 10 hours after getting it drained, the lump has started to come back. It's not as pronounced as it was, but it's there. Knowing that this cyst may very well be a permanent resident on my neck might very well be fuel enough for me to get the total thyroidectomy done.
Goodness Bob, it sounds as if you;ve gone through a lot the past couple of weeks leading up to Christmas. What have they decided? Are they removing it? I don't know about others but I was never given any option of medication to reduce the size of the nodules. In fact, I'm not sure that kind of meds exists yet. Good luck!
i have just had a total thyroid removed as i had multiple nodule goitre. I always had a problem swelling food and while talking could you please tell me if i will gain weight with taking the levothyroxine i am already overweight.
I was just dx with papillary cancer. I'm getting a tt with radioactive iodine. I had gastric bypass surgery in 2009 and lost 100 lbs. Also had both hips replaced. What can I talk to the endo about to begin with so I can maybe keep the gain to a minimum?
Kiran, some people don't gain weight, but others of us do. If you feel tired, lethargic and depressed get your doctor to give you T3 and T4.
Bergy, I'd tell your doctor you've had weight problems in the past. I'm not sure if the gastric bypass will have any effect as the weight many of us gain after a thyroidectomy is not related to how much we eat.
Oh, Cindy- forgot to mention that the final nail in the confidence-in-my-doc coffin came when he lowered me to 88mcg thyroxine. Did I mention I had a TOTAL thyroidectomy? My aunt is a nurse practicioner and when I told her this, she was astounded. At the time, I weighed 188lbs, with no thyroid and this man thought 88mcg of levo would be sufficient for someone with no self produced thyroid hormone. Just nuts. Got to the point where I couldnt walk for exercise any longer because the joint pain was so bad.
Prayes to ALL OF YOU who are suffering in the aftermath of thyroid disease. Lets just continue to educate ourselves and DEMAND help even when physicians want to brush us off. Keep calling their offices and confronting them with your symptoms, food journals, questions and knowledge. I've gone back to my old endo's practice now that he's RETIRED and magically one of his partners actually admitted that he believes I was "being undertreated". Mind you, he was careful not to point fingers of blame, but still it was an acknowledgement that my symptoms were real and I was suffering more than I had to under that man's care. I thank God he retired, I truly do. I'm giving levothyroxine another shot at more than DOUBLE the oriinal dosage the old doc had me on. This is my second month and I feel "ok". Not losing any weight, but I can say that I'm not exhausted by the end of an average work day. Now to try to integrate an exercise program with the total lack of fitness I find myself with. Uphill battle, but I'm getting married in the fall and I REFUSE to do so in this condition. Love and hope to all of you!
Cindyvine,
Greetings! Wow what a path you have traveled. Mine was similar, but not as drastic as yours.
On April 8, 2010 my total thyroidectomy was performed due to a goiter & nodules (1 in each lobe) that were creepingly growing larger by 1 cm each year. Only by reading the pathology report did I discover that I had Hashimoto's and (in the nodule of my left lobe) a papillary microcarcinoma was found. Because it was so small, no further treatment was required.
My TSH had an issue stabilizing but found it's balance @ 150 mcg of synthroid only. Recently, I changed to the generic, levothyroxine, and it had to be raised to 175 mcg.
However, my reason for commenting is that I have lost half of my excess weight since the surgery and feel I am well on my way to the next half. It's been a long road and I was blithely unaware that I was supposed to have trouble losing weight.
I have never had trouble gaining weight. At times I thought that all I had to do was look at food & I would gain. I do have trouble maintaining a steady range and not binging. So my true challenge will be when I reach goal.
If you are interested, here is a link to my weight loss ticker.
http://www.tickerfactory.com/weight-loss/w5XNG4i/
Click on it and you can see all my data since May of 2010.
Doctors appointment coming up, gotta run.
DriverMama, you are an inspiration. Thanks for sharing!
I had a partial thyroidectomy in nov 2010 with a 4 cm growth and goiter, turned out to be follicular. Also despite daily exercise and diet i gained 20 kgs in 6 mths. After the discovery of another growth on the remaining half of my thyroid I had a second surgery to remove the half that was left. I am on 100 daily of levothyroxine. I live in a frenchspeaking island and my French is not awesome. There are only 2 endocrinologists here and coupled with the communication issues she only looks at blood results and doesn't listen or see what I am explaining. I don't know what to do now. The weight gain is ridiculous, I have swollen ankles, insomnia, the mood swings and depression is driving me crazy, my marriage is in trouble because of it. I can't control how I feel sometimes, I cry a lot, have no sex drive, low self esteem due to weight gain, exhausted, brain fog, you name it.
I am a stay at home mum with 3 kids and I don't know how much longer I can continue, what should I do, does anyone else feel like this? How do I get my point across to the doc, should i just see my gp and hope she listens? I have not had problems with depressions before but this is ridiculous especially just before my period. I don't think my family can deal within for much longer. I have no energy, I have zero tolerance, the slightest thing can make me so angry. How do you get your husband or partner to understand?
Chellenc I hear what you are saying. The docs all ignore our symptoms if our blood levels are in the normal range. My advice is get your doctor to prescribe you T3 as well as T4. It has made a huge difference in my energy levels.
hi i had a tt in sept 09 [cancer] an 2 be truthful it was the worst decision ive made i have weight gain tiredness beyond belief pains period change an early menopause im 30 also depression. i feel like i have lost myself i get pushed from doctor 2 doctor and none of them have any answers its frustrating. i hope u all get better results an hopefully they will invent a miracle pill that will make us all better lol
Sammy I am with you and fel your pain. Let's pray for that miracle pill!
I had my thyroid removed 4 years ago,i also had thyroid cancer,i went through radiation and have a ultrasound every year,i've also have a big problem losing weight.nothing i do has helped,i walk every day and eat less.I would also like to know if there are any studies or any weight loss medication for people that has had there thyroid removed
I had a right hemi-thyroidectomy in 2002 due to enlarged goiters and possible cancer. Thankfully, it was benign. I was able to live with 1/2 a thyroid, and felt much better until 2010. The symptoms returned, even though my thyroid levels were normal. Endo is fantastic, didn't care what the levels were, and upon ultrasound, found my remaining 1/2 had succumbed to the same problem I had before. Didn't think much about surgery again, except the thought of daily thyroid med for the rest of my life. Had the surgery July 2011.
Surgerywent well, home after 23 hours, but by the next morning, tingling sensations on scalp, feet, and hands had turned to burning. My eyes were twitching and tongue felt like it weighed 100lbs. By the time I got to the ER, I was almost in full seizures and all my muscles began drawing up. My calcium had dropped to 5 (normal is 10) due to damage to parathyroid in surgery. Spent almost 4 days receiving IV calcium to bring my levels closer to normal. I now take prescription and OTC calcium to keep the tingling away and levels normal.
I, too, suffered from weight gain (almost 2 pounds/wk) and that was with watching my diet and exercise. My Endo switched me to Armour Thyroid from Synthroid, which stopped weight gain, and in the last month, I actually lost a few pounds. Still trying to find a balance, but as someone above said, it's more of an art than science. Also having the bouts of depression, very erratic high blood pressure which is not normal for me, fatigue and GI spasms. Unfortunately, the best meds for spasms and BP are calcium blockers, so I'm unable to take anything.
I have found that taking a good Vitamin D3 supplement, along with probiotics and fish oil, has helped with immunity, and my Endo had no problems with me adding those.
Thank you for your testimony. It's so nice to know I'm not alone.
Khalilah, I haven't heard of any weight loss meds for thyroidless people!
Mel, thanks for sharing your story and those weight loss tips!
I had very agressive thyroid cancer at age 18 (now 36). 4 surgeries, 38 radiation treatments, mayo clinic, IU med center, iodine radiation, and to many tests, scans, and bloodwork to count. My synthroid is regulated, i still get bloodwork once a yr. I am an avid runner. I run 10-15 miles a wk, lift weights and do yoga. I also work a physical demanding job. My point is.....i cannot lose weight. Im as healthy as i can get and cant possibly spend anymore time exercising than i do. Im still 20-25 lbs overweight. Somebody, anybody....please help me! Im thinking of adding iodone to my diet bc i dont eat any fish products, and am mostly a vegitarian. Oh also, i developed vitiligo 9 yrs ago. Anyone have any thoughts on that?
Kelly it's terrible to have something like that happen to you when you are still so young! Hopefully someone will be able to come up with some good tips!
Cheers,
Cindy
Finally! Reading this article sounds like me talking to my endo about my issues...
Total thyroidectomy in March 2008 (follicular carcinoma), no weight gain until Radioactive Iodine in Oct 2008 (had to save up vaca time to take off work). Then steady weight gain of up to 30+lbs despite strict diet and rigorous exercise (weights, crossfit, spinning, etc). Then came the big problem - premature ovarian failure (menopause) at the age of 32. So then the depression REALLY set in...
I feel like this "disease" has truly ruined my life. I have lost friends, boyfriends, etc. I live a very lonely life with just my dogs, never want to go out b/c of my weight. Can't even think about getting into a relationship with someone - really, who wants an over weight girl who CANNOT have kids...I've tried anti depressants, but they cause me to be more depressed and gain more weight (even Wellbutrin).
If I would've known then what I know now, I would've opted to not have the surgery. At least my quality of life would still be good & not what it is now!
Melissa that is terrible, my heart goes out to you! I do think that you need some counseling to help you get through this, otherwise it is going to take over your life. I've just been diagnosed as a diabetic and am now on diabetis meds and that seems to be helping me to lose weight.
i had a TT in 2009. for over a year i could bearly walk due to the fatigue. it was like i had a ton strapped to my body.my mind was always in a total fog. i couldnt focus, my memory was shot...i finally had enough and had to get ugly . he finally prescribed me t3....holy cow what a difference. it pulls me out of the fog and for the first time in a year and a half i actually felt human again. my energy levels were higher. i have not lost any weight but i have not been exercising or dieting. this is something that i am fixing to start. i am 47 so age is also working against me. before the surgery i wieghed 137 i am now at 180. i might add that most of this weight gain was prior to the surgery because i was on anti thyroid (as high of dosage as they could go) and high blood pressure to keep me from having a heart attact. i had graves disease.i have only gained 10 pnds. since the surgery.i recommend anyone to at least try the t3s. what can it hurt.?? lots of luck to all on this page and i will keep you posted on my situation as i am going to lose this weight.!!!!!!!!!
Sharon, T3 changed my life as well, am so pleased you are loving it!
Hi I am in Perth Australia,I have 3c ovarian cancer.which reoccurred last November..thyroid mass showed up on my pet scan and last week had half my thyroid taken(they had done 3 needle biopsies..which were very painful and no good.I see my endo on Wednesday to see if thyroid is cancerous..I admit I am 70..very vain..and in middle of uni study to get my BA..my OC is classed as terminal (chemo is all they can do) my weight has gone to 89k with cancer-but I am 5ft 7 and very fit so no no no to more weight gain..and I am so scared he is going to say it is cancer on Wed. I cant take much more...my chemo is on hold while I wait for thyroid to be sorted..so cancer is growing..I am going on greens supplements and selenium as soon as this is over. He said he will operate again within the week if needed...any advice ????
Wow Blossom! You are having a rough time of it! Hopefully somebody reading this will be able to give you some tips. It's hard to give advice until you get your results back. Am praying for you that it's all good!
Thanks cindivine,will post again after Wednesday..will know more then.
Will be thinking of you!
I cannot tell you how happy I was to find this article from you!! I had my thyroid taken out a year ago this month and everything you said happens does. I am gaining weight like crazy and it sucks. I cry all the time cause I know I am doing all I can. I have even gone to a nutritionist and all I get is " your taking the right steps". I am so tired of hearing that cause I know I am. I cry at every doctor appt but all I get is "it takes time to get you to your synthroid level". I have been trying to find support sites where I can talk to people and am at a loss. Would love any help with that. It's just so hard to talk to friends who just don't understand. I'm constantly depressed and tired cause you eventually get to the point of not caring anymore. I feel like it was a bad surgery to have done but they said if I didn't I would eventually choke. Thank you for making me feel so not alone. And if anyone knows of sites that I can talk to others dealing with the same I would greatly app it!!!!!
Tracey, you are welcome here! Have they prescribed you T3 as well as T4? It definitely makes a big difference!
so far i am only on the synthroid. i also have high blood pressure so am on meds for that (3 diff. ones) and have lymphedema in my legs. I just feel like i cant catch a break. i do exercise but with the lymphedema it makes it hard cause my legs swell and get painful. they switched my synthroid to name brand instead of generic because they said some ppl just dont register with generic as well. i do feel like i am getting the run around and it is aggrevating. This is my life and body and i tend to feel there is no help anywhere. Thank you for posting this cause it did make me feel good that i am not alone.
Tracey I also have high blood pressure which only started after removing my thyroid. Before that I suffered from low blood pressure. After they removed my thyroid I started with odema in my lower legs, ankles and feet. Some days it was so bad I struggled to fit on shoes. I am now on a diuretic which seems to have cured that.
Hi Cindy, Thanks so much for posting about your experience. I too had my thyroid removed - in 1998, my weight has been creeping up ever since. I've had 2 children (with much difficulty in getting pregnant) and have not lost the weight from either pregnancy. I've tried just about everything, the only thing that has ever worked is the hcg diet. I stopped that when my 2-year-old was diagnosed with Type 1 diabetes (all autoimmune problems!!) I regained the 30 lbs I had lost quickly and have since been diagnosed with celiac disease. I have lost 6 lbs in the last couple of months because of being gluten free but now my endo believes this is the key to my weight loss. (I'm still carrying +/- 50lbs extra) I'm not convinced as she has always given me the usual lecture re. working out vs. calorie intake. I have told her until I'm blue in the face that I don't sit on the couch stuffing my face all day long! They are all cut from the same cloth - make you feel like a liar. Anyway, I take levoxyl with cytomel - when she added the cytomel last year it didn't make any difference to my weight. I still get swollen ankles, exhaustion etc. But it's good to know that I'm not alone! Has anybody else gone down the celiac path?
Tracy there a number of herbs that may help your HBP and lymphedema. Why not try changing your eating regime.
I had my thyroid removed 2 months ago. My levels are fine and I have always been underweight. But now I look like I'm 6 months pregnant. Seriously, I don't look fat I look pregnant and even get asked questions about my pregnancy. I cannot be pregnant. Anyone else have this problem and what did you do about it?
i appreciate all of the great input. my story is this....i had thyroiditis about 14 yrs ago. it resolved and i never had any more problems. my lab work was checked annually which was always normal. i was having some problems with my neck about 2 years ago and had an MRI of my neck which showed i had numerous nodules on my thyroid. this was sent to my primary doctor who sent me a letter saying he wasn't concerned about it. well about a year ago I switched to a new doctor who wanted to pursue this further. An ultrasound revealed I had a goiter, which led to a visit to an endocrinologist and a needle biopsy. I was told the biopsy showed to be highly suspicious for papillary cancer. I had a TT 5 months ago and the pathology showed that it was in fact negative for papillary cancer!!! I was quite angry for awhile. I have since gained about 5 pounds and feel very frustrated about the weight gain. The thyroid gland as previously noted is an extremely important gland in our bodies and i agree that my symptoms don't correlate with the lab values either! i am going to look into adding T3. I am just now starting to exercise after taking an almost 2 year hiatus (went through a divorce at the same time!) I feel discouraged after reading all of your stories of weight gain and not being able to lose weight even while exercising. Good luck to all of you! If you have any other advice for me, please share it : )
Theresa, I haven't gone down the celiac path, but I do now suffer from high blood pressure and diabetes!
Robert could you please tell us what herbs to take?
Carolyn, maybe you are just carrying the extra weight in the tummy area?
Angela, it does seem the doctors only look at the lab work and not the symptoms. They definitely need to do more research on the thyroid and the impact on a person when its removed.
I have changed my diet over and over. Tried every plan my friends told me to try. I did have doctor today and I requested to be sent to a specialist. It is very discouraging and I try to stay positive but when all u do is gain weight and feel sluggish it's hard. Hoping the specialist calls this week!!! I thank you all for the support and ideas. I felt so lost
Tracey, will hold thumbs the specialist contacts you! We really need to find the one doctor in the world that looks at our symptoms and not the lab results!
My daughter is 19 and needs a TT (2nd dr. opinion same conclusion as first). Weight gain will be a huge concern for her so if you can summarize what I should be asking the dr for in terms of meds to stabalize her metabolism and energy after the TT I would be very appreciative.
Tracy, get the doctor to put her on T3 and T4 straight away. She should also start watching her diet and exercising regulary.
I was just wondering if everyone on here has had thyroid surgery or radiation therapy. I guess what I'm asking if you had the choice would you have surgery or would you have radiation iodine therapy? I'm trying to figure out which is the lesser of the two evils. My history is at 14 I had a partial thyroidectomy due to hot nodules. After the surgery everything was great, I didn't have to be placed on thyroid replacement and I did gain some weight but I attributed that to just growing. I am now 27 and have just found out that I have nodules on my remaining thyroid. I don't know what to do because I don't want to gain weight and now I'm worried because me and my husband want to start a family in the near future. I know I don't really want to have surgery again and go through the recovery and scar again. Has anyone had Radioactive iodine therapy and had good results?? Also have anybody after having either treatments been able to get pregnant easily or normally?
Jeloyer, I'm not sure how it affects getting pregnant. My friend had the radioactive iodine therapy and that seemed to work for her. It depends on how big the nodules are I guess. You need to tell your specialist that you want to have kids and get them to advise you. As for the scar, a good surgeon will cut along a crease in your neck so that the scar is almost unnoticeable. Good luck!
Iwas done partial thyroidectomy in july 2011 due to nodules on the thyroid gland.histology was done and showed anormal goitre.since then i have experienced increased weight gain which is bothering me too much since the nature of my job doesnt allow this.please help
hi Cindy,
finally went to my doctor and asked about the t3 and t4, she said she would like to try me on armour thyroid but wants to wait till the thyroid specialist calls her back. she is trying to get me an appt in to see him. still very discouraged and i even explained that to her!!! she did labwork and found out my iron, vitamin d and b12 are very low and IGM level is really low so she wants more tests done. i just feel like a pin cushion and rat that they are doing experiments on and i am to the point i told her i cant take it anymore. there has to be someone out there somewhere that can help me. trying not to get to discouraged but its really hard when i keep gaining weight and feeling so blah!!!! thank you for listening and giving feedback. this page has been my only support to stay sane!!!
Hi I had a tt after 6 years of going back and forth to my levels were always normal,in the end I couldn't sleep without feeling I was being strangled I couldn't cope anymore I was constantly getting chest infections and losing my voice.. I went back to dr and she sent me for MRI scans and nuclear scans, they found my thyroid was strangling my trachea so decided to operate.. I went in and that's where it went all down hill, I too had rectral sternal growth it was growing down into my chest and size of grapefruit, I come out in recovery and couldn't breath and when I tried to speak I grunted.. Ent dr come in and looked thru a tube up my nose( just what you need after waking up) and my vocal cords had paralysed and weren't moving so got rushed back in to have a tracheostomy tube inserted in my trachea.. Had that in for 8 weeks.. Was so happy when just right side cord moved so I could have it out. I had 4 kids to take care of I couldn't be like this for long, that was almost 2 years ago and I still struggle to breath sometimes and my voice gets a bit croaky I haven't put much weight on I tend to stay same.. But Im here and happy so that's all that matters :)
I cried as I read your article. I too had my thyroid removed and nobody warns you, nor do they care? Gave up going to doc's two years ago as they are so ignorant and rude...frustrates me IT IS NOT MY FAULT I AM NOW FAT AND ALWAYS SAD!!! I never had trouble shedding kilos before operation? "But oh no apparently my levels are in the range " Pfft who's range exactly?????????
Eva, we are all in the same boat. What we need are some endocrinologists to do more research and find out why with normal levels on thyroxine, we have all the symptoms of an under-active thyroid.
Tracey, I am getting frustrated as well, especially seeing that because of the extra weight, I know have high blood pressure and diabetes!
Amy, it sounds like we had the same thing, the thyroid slowly strangling the trachea. Luckily, they didn't damage my vocal chords.
JB, my thoughts exactly. They're not fat so they don't understand. They tell you ton exercise, but I don't have the energy after a full day at work!
I had my thyroid gland removed in 2009 and yes was told by my consultants that due to the high dose of thyroxine that I'm taking that the weight gain was not due to the thyroidectomy!
I gained approx 36 pounds post op and took the bull by the horn and joined the weight watchers plan I have lost 30 pounds of the weight that I put on post on post thyroidectomy and feel great so much so my dose of thyroxine had been reduced........but it is hard I really have to watch what I eat and have to exercise daily.........carbohydrates are the devil!
Glad to hear people are in the same boat as me but I have to face facts that i will have eat and exercise sensibly for the rest of my life.
I am S/P thryoidectomy 1 mo and am severely depresed, anxious,and fatigued. So at this point not worried about my weight. Tried to talk to my surgeon about my depression and they don't really seem to think anything about it. It was so bad today decided to search post thyroidectomy and severe depression and am shocked at all the blogs I am finding. Will be talking to someone come Monday about adding to my synthroid-know I am hypocalcemic after surgery and am taking calcium. I am desperate at this point since I thought I would be helping myself to have thyroid removed due to large multinodule cysts.
Wendy I am blown away by how many of us have the exact same problems! Great news on your 30 pounds loss!
Michele, the depression is definitely connected to the thyroidectomy and tells me that they haven't got the dosage right.
I can't believe how many of us aren't getting the medicine we need when it's out there! I had thyroid cancer and had it removed a little over a year ago. I gained 20 pounds during the process and have lost 15 of it. What made the difference was that after being totally exhausted on a high dose of synthroid, I found a doctor who explained I was missing t-3 and put me in Armour thyroid. I could not believe how much better I felt in 1 hour. It was so marked that I was angry the regular endocrinologist didn't know it could help so much. My new doctor explained that a normal thyroid produces the t-3 itself but if you don't have one --- you just can't make it from just getting t-4 (as in synthroid) and need it. It seems that doctors are trained only on newer therapies and don't realize the older products (Armour and Nature Thyroid) are better at times for this.
Laura, it's great that you found a decent doctor! I swear by T3, I feel much better, have more energy, but the weight still sits there!
This is a great place! I had half my thyroid out on March 7,2012 and have so far been having total exhaustion, lack of interest in everything, a lot of nausea along with hot flashes and freezing spells. I also think the scar is the pits - its all puffy above the incision. Will that go away?
My friends all think I am making a mountain out of molehill, but I don't even have the energy to go to a part time job!
My house is a mess and so am I. I have not gained weight but I think that's because of the nausea.
I also have celiac disease but after 5 years of guten-free, my weight is stable, but I also look 6 months pregnant! I do not exercise because of severe back pain, but I do eat healthy.
I hope we all get the help we need.
My scar also bothered me. It does get better tho, it's been one year since I had mine taken out and can barely see scar. I still feel blah all the time and weight still adding up. I finally got a call from the specialist and I have an appt on may 25!!!! I really need answers and new med to help this!!!! It's frustrating and I don't want to live my life like this!!!
I had a tumor on my thyroid gland when I was 19 and had the tumor removed, leaving half of my thyroid remaining. The doctor told me I would need to take nothing to supplement my thyroid, as the other half would sustain me. The medicine changed on this, but none of the doctors I went to were aware of this change. Now they know that if they remove half of your thyroid gland, the other half will only last about 10 years and must be supported post-surgery and from then on by thyroid medication to prevent it from going bad. I was a naturally thin girl and went on into my thirties until I started gaining weight and having energy problems. I went to the doctor and said maybe they should take a look at my thyroid, but they looked at my blood results and said there was nothing wrong with me, I was just fat and needed to exercise and diet to lose weight. I went to six different doctors and they all said the same thing. While my friends wore gorgeous outfits, I wore a tent. While my friends and relatives wore nice swim suits at the beach, I didn't go to the beach. I stayed away from the camera, not wanting my photo taken at over 200 lbs, so there aren't as many photos of me in our family album. I would go up and down in weight. Today I know that during the up years, my thyroid was acting up and during the down years, my thyroid was functioning properly and I could keep my weight off. I would be going through a bad phase, then suddenly my brain would start looking at food normally again and I would start losing weight. I finally reached the point, at 53, that I could not function. I went to the doctor and forced her to get an ultrasound on my thyroid, which showed lesions, but the doctor said not to worry about it. I insisted on going to a specialist over her strong objections. The specialist gave me four different prescriptions to take, including human growth hormone shots for my pituitary, blowing me up another 53 lbs. My thyroid began to turn into a goiter and I forced the specialist to give me another ultrasound 6 months later. He still wasn't going to do anything for me even though I could barely function and was down in bed or on the sofa all day. My husband finally got upset and insisted on going with me to the doctor. The doctor was so intimidated by the mere presence of my husband that he went into overdrive trying to figure out what to do with me. He ordered a battery of tests and it was determined that I needed a radical thyroidectomy. I, too, had been choking for a few years at this point and it was difficult to eat because it was so hard to chew and breathe at the same time. It has been almost two years since my thyroidectomy and I have lost 53 lbs since the operation. I still need to lose another 50-70 lbs. I hurt my knee as soon as I started exercising in a water aerobics class, so I turned to - drum roll - SWIMMING LAPS. Swimming laps in the pool at my gym is a God-send. I swim between a half a mile and a mile five nights a week. I go during the last two hours of the gym's operating hours and there is nobody there to see me in my swim suit. It is a heated outdoor pool and I swim rain or shine. After swimming for about five or six months my knee was considerably improved, so now I have begun to walk in the afternoons. I walk for about 45 minutes 3 or 4 days a week. I am eating the Dr. Perricone anti-inflammatory diet, which I find to be perfect for my body. Dr. Perricone is a dermatologist and he promises 10 years off your face in 30 days eating his diet. He has several books out, such as Healthy Aging, The Acne Prescription and The 30 Day Face Lift. His theory is that a cell is a cell is a cell and we are eating to feed our cells - whether it is a skin cell, a blood cell or a brain cell, we are eating to feed those cells. Our bodies have a ph balance that needs to be in balance in order to be healthy on a cellular level, so we need to eat foods that don't inflame our cells. Go into the search engines and dig around by typing in Dr Perricone's anti-inflammatory diet and you can find a list of the foods to eat and not to eat for free. You don't have to buy the book if you can't afford it. When you think about eating the anti-inflammatory diet you may think, "Oh my gosh, I would rather die than eat like this the rest of my life." I did, but if you just try it for two weeks you will find that the food itself, which at first you may not like, will begin to call to you the same way bad food calls to you now. You get to where you can't wait to eat oatmeal with blueberries in the morning and have a nice piece of chicken and a piece of fruit. You may have never heard of butternut squash soup before, but now you'll drink it down because it is so delicious. Lots of fresh fruits and veggies, green tea, water, fish and foul, nuts and grains - its a yummy diet once you get used to it. Finally, I think the main thing is to keep up your spirits and decide that, darn it, I am going to get my body completely to normal! I am going to get into tip-top shape again - no matter how far down I've gone! I'm willing to go to any lengths to get myself on the road to recovery and I'm going to make it!
Cindy, your scar will virtually disappear. You can't see mine at all as the surgeon cut across my natural crease line.
Tracey, good luck at the specialist!
Skyway, thanks so much for the exercise info and such an encouraging comment!
So Frustrated..I have been going thru a nightmare for 2 years. Cindy thank you so much for these post..I search for info all the time.. And was a surgical technologist for years and thought I was educated.
I went to E. R. For two years with a chronic cough that was and still is so horrible. I was diagnosed with bronchitis, laryngitis, given breathing treatments. I was having heart palpation was sick and sleepy all the time basically got to where I would work and go home and go to bed... On the weekends would not get up at all. I have a husband and 10 kids... I feel so bad for them.
I finally got sick in oct 2010 went into the hospital with a bad kidney infection, I needed 5 blood transfusion and all kinds of other things... I got discharged after 9 days.. Three days later I was back in the ER with the horrible cough... Finally ER Dr. Says there is something in your throat making you cough like that. He did a CT of my throat I was admitted..they did needle biopsy it came back begin, but needed to be removed. E.N.T. Dr comes to see me in hospital and says he will send me to a surgical center.. We tell him no we pay so much for our ins... And ER co-pay is 200.00 once I'm admitted they do everything then bill me 20%..we tell the Dr please I need this surgery..he says he will see what he can do. The next day the nurses try to have me check myself out of the hospital they tell me ... It is not cancer, it is not an emergency.. I tell them no I will go home when the ENT Dr discharges me. They send in the charge nurse she tells me they think I just want pain medication, didn't I work for surgeons, have them do the surgery. I told her with being a charge nurse she should have a better standard of care, the surgeons I work for are oral maxillofacial surgeons to get out of my room... they left me in my room all day.. No medication, no information, at 6:30 they tell me. I am on surgery schedule in am.. I was so happy. Little did I know my nightmare was just beginning.. I thought this surgeon was my savior. As a surgical tech I know to do research on Drs but I felt good about him. In morning he told me nothing to worry about, except after surgery just need to be watched for low calcium for few hours and my voice could be damaged but no big worries.. I wake up go home three hours later... I am home for three days go to see him for Post-op visit and am told I have stage 1 papillary cancer, it's the cancer to have, they will operate in the morning. He said I should have no complication from surgery. I will be left off thyroid medication for few months after surgery and will need to do radiation, that I will feel and be a crazy person, literally for my husband to get the guns out of the house and hide the knives, he kind of laughed the dr told him no seriousley
Sorry Cindy... (Spelled seriousley wrong tried to correct it and hit post)(you guys are probably honing to hate me but it feel so good to be telling my story I will try to shorten it) ...So I have surgery next morning go home...I was told no problems, just go home get better and be positive. I won't even go thru all they agony I went thru and how crazy my head went let's just say my husband is a saint. I went after the months. I woke up in middle of night insolvent much pain couldn't feel my hands, or feet my face was drooping on left side and was numb I went to ER after few days of test was told, my calcium was too low. My parathyroids are probably swollen from trauma and not working properly I get IV calcium and start to get better they send me home on calcium pills. I go see ENT Dr he says everything will be fine in a few months. Let just say it's two years later. I have found out all 4 of my parathroids were accidentally removed. I have been hospitalized so many times for IV calcium..they put a port in my chest and I get IV infusions three times a week or I did.. I had a falling out with my oncologist this week and he is discharging me from practice. I am on so many pills a day. I have been thru so much. Weight Gain, night sweats, extreme bone pain, I go days sleeping to where I can't get out of bed, can't walk on my feet,chronic cough, to where can't breath pull all the muscles in my body and feel like my head will explode, I pass out, I have days where I vomit all day, I have been off work on disability some many times. I wish I could tell all of you all the meds I am on, all the Drs I have been to and all the problems I have but this post is to long already. I will just say the dr's put me on all kinds of meds, with all kinds of side effects, they don't care about symptoms or aligments, just blood work.. When put on pills that make me horribly ill, I am told take they anyway. I take my pills as diligently ad I can . I have so many there has been confusion I run out and forget to fill them(I also didn't mention I get what they call brain fog so I can't think straight , can't focus, can't remember things) anyway a year ago I went to my Dads for a month. I went to a resort with him three hours from his house forgot one of my pill bottles, called my dr got no return phone call , was without this med Calcitrol 0.5 m.c.g. I was taking 2 tablets 3 times a day.. I should have continued to call my dr but I felt so good.. I did research on Internet this medication is vitiam d3 the side effects are weakness, fatigue , bone pain, and some many more, can get it by certain foods. I never filled the med again. I should have told dr but he takes my blood every week and never said nothing for a year. Never asked me if need refill reading my medical records now he notes every week that I take It and it was delivered to pharmacy whatever that means. Well he didn't tell me he was contacted by disability because I haven't filled that script for year. They called me and I lied , I am not normally a liar but was scared I didn't want him to acuse me of not taking my other meds. I told them I filled the med in NY and when I got back was hospitalized which I was and that ER dr wrote script for mail order. Well he has researched and caught me in this lie. When I went for treatment , he told me if I don't have a script # he is discharging me from the practice as a non-compliant patient and a disability fraud that the calcitrol is for absorbtion and by not taking it I caused all of this and did it to myself. This is only a small portion of my story, sorry I rambled but I had to get this off my chest. Thanks everyone, I am sorry you are all going thru this . Just know I understand what each and everyone is going thru, everyone hang in there and take care and be your own advocates do your research and don't stop till you find a dr that listens to you. The weight gain issue is horrible, but you all know that.
hopefully someone can help me i got more then half of my thyroid removed and since then i have been gaining weight the doctor does not have me on any medication and will not put me on any at all cause some how my tsh and other levels are comeing back normal. but in the meantime i went from 120 to 148 in a few months . what can i do since they refuse to put me on a med since my results are so called normal
Marilyn I am so sad to hear your story! You have had such a terrible time and makes the rest of our stories pale in comparison. All I can say is hang in there!
Brenda, I think you need to change doctors and get a second opinion!
Hi everyone., it is great to read your posts knowing that there are many others out there with the same problems I have since a partial (3/4) thyroidectomy in 1992. I am on adequate thyroxine & still can't lose the 20 kg I put on in the first 8 months following surgery 20 years ago in August! My surgeon failed to do a post op thyroid blood test and recognise that I had Hashimoto's which is an auto immune condition. After 6 months I went back to my GP begging for an explanation as to why I had put on so much weight. No joy there just an accusation I must be eating too much!! My top weight had only ever been 70 kg. I am 5
ft 9 so a good weight ( BMI 22). I now weigh 92kg ( BMI 30) My doctor is still at me to eat less and lose weight. He is going 'by the book'. Adequate thyroxine does not mean you return to your normal weight. Why the weight still sits there is beyond me! You would think the medical 'professionals' could explain but they can't. So ... if you aren't seeing an endocrinologist-you should be. Regular blood tests every 6 months are mandatory to monitor your meds. Diet? Consider the following:
1. Cut your carbs right back to one or two serves per day maximum. Your cells have lost most of the hypochondria ( organisms that metabolise carb) so your body just stores it!
2. Keep your fat intake low for the same reason as above.
3. Keep your sugar intake as low as you can. Sugar feeds cancer. It also gets stored if your body is getting too much, & it makes you leptin levels go out of whack.. or do you want to get Type 2 diabetes?
4. Take your thyroxine tablet early in the morning at least an hour before food. Take calcium and any other vitamin supplement at night. Thyroxine and calcium tabs don't mix!
5. Use a non flouride toothpaste. Flouride diminshes the effect of thyroxine.
6. Stay off anything soy -same reason as 5.
7. Eat protein at every meal including breakfast.This is good dietary advice for everyone. Eat a boiled egg, a cheese omelette, a nut bar, yogurt! Anything but.. cereal milk & sugar!
8. Limit wheat. The longer you have no thtroid ( or as good as none) your system will become more sensitive to lactose and gluten. Eat rice based products instead, including rice milk or lactose free milk.
9. Exercise-a little every day. Gentle exercise such as walking
is good.
10. Limit your calorie intake to @1200 cals per day. My Fitness Pal is a great app for recording your daily food intake. It tells you if you are having too much or not enough of anything-fat, sugar, protein, vits & mins. Fantastic!
11. Drink lots of water to kerp your bowels moving (& eat a couple of pieces of fruit per day for fibre).
12. Finally. THE most important thing- get lots of sleep! At least 8 hrs a night( minimum). Ideally 9. Otherwise you just won't function! PS. If you wake up in the early hrs like I have today because you're too warm in bed ( lovely thing about Autumn & Spring with the changeable weather!) .. take a multi-vitamin at night so you don't get run down due to lack of energy and appetite. Wishing everybody all the best. Follow your gut feeling about your meds-doctors don't know everything! Only God!
Thanks so much for those tips, Debra! I had no idea about Soy and Fluoride. I need to take a look at my toothpaste!
@cindyvine, thanks so much for your and other's comments - I've learnt so much from reading all the posts!
I had my thyroid removed last year - first half they discovered a 4cm papillary tumour, they took what they thought was the 2nd half later that week, & my surgeon proclaimed it as being "pathetic". In June 2011, I was due for radioactive iodine treatment, but they discovered a large portion of thyroid still remained, high up in my throat....
Another operation and radioactive treatment later (Dec 2011) I was told there was still a remnant of thyroid remaining, so I am due for more radioactive treatment in June.
My journey is somewhat complicated because I also have Lupus, an auto-immune disease. Taking the porcine-based Armour T3 is not an option because those with lupus cannot eat too much pork. I am grateful for the information provided here, after my treatment I will discuss further options, because like so many others, I have noticed a weight gain and feel that there must be other options!!
Good luck with your June appointments, Ozziekim!
Hi all
4 weeks ago I had a TT and have been sluggish, tired and gaining weight. I was ok to start and have gained 4kg in the last 2 weeks even though I have not eaten over 1200 calories a day which is pretty much what all diets recommend. I am told by my endo not to exercise as my voice isn't back properly since surgery. I am so upset all the time that I will just continue this weight gain. If anything maintaining weight is not enough for me, prior to getting sick I was working really hard and losing weight. I cannot be happy how I am. At my last appt 2 weeks ago my endo said putting on post op weight is normal, but more since then is weight more than post op weight. I am on thyroxine, only 75, that seems so much lower than everyone i talk to who are on double this, could this be the reason for my weight gain and other sympoms, anyone know?
Thanks :)
Hi very interesting read. I has a HT left side in 2004 and even though my hormone levels were borderline normal according to the endocrinologist he put me on thyroxine 50mcg a day. I didn't really notice any difference, but do suffer dry skin and feel the cold etc. I recently relocated to another state and saw a new specialist and he suggested to go off the medication for 3 months. He said if I get really lethargic and put on weight to start taking it again. I lost 9 kilos doing the dukan diet then decided it wasn't healthy and quit sugar, try and eat healthy was thinking of trying Paeleo diet as my daughter who is big boned looks fantastic lost all the puffiness in her body. Anyway I think its now 3 weeks since I went off meds and now get heart palpitations intermittently during day and night also along with hot flushes. Not sure whether to resume medication or not. And no I don't notice any difference and haven't put on weight as yet and was pigging out on junk food. So back to healthy diet. I agree with the comment that sugar is poison low fat food is full of sugar so don't eat that. I drink homogenized organic milk, on Dukan you have to eat low fat. Which i feel is unhealthy I also broke my ankle and was scared of putting on weight but actually lost it while being laid up with a cast. Hope everyone gets the help they need.
I wanted to add to Debra's excellent comment above. For those of you who are hypothyroid or have had partial thyroidectomies, also be careful about consuming too many raw goitrogenic foods.
More details about this can be found in this excellent post: http://peaceinmyvalley.wordpress.com/gluten-free-b
If you have had a total thyroidectomy, goitrogenic foods should no longer pose an issue.
Maysee it sounds like you are not getting enough meds. You need to get another opinion.
Mandy I'm not sure why that specialist told you to go off thyroxine when your levels were borderline normal?
Thanks for the tip RT!
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Great explanation, thanks.
AJ..