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!
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fundamentallife 17 months ago
Great explanation, thanks.
AJ..