total thyroidectomy and weight gain

Sorry for the long post, but when I had my total thyroidectomy I think reading this would have helped me. Just want to give some encouragement.

Hi Everyone:
I had a total thyroidectomy May 20, 2008. I had a rough time after, and just kept reading some tough stories that really worried me online so I wanted to share my own success story in the hope that some other newbie may be comforted. It is a long post but I think it would have been good for me to read when I was first going through all of this. The main theme is weight loss and use of Synthroid.

In January of 2008, as I turned 28, I decided I needed to start losing weight. I was up to 210lbs. I was always very active, I had played rugby since I was 19. I had just completed my first half marathon which I had trained for for the previous 9 months in which I only lost 5 pounds. I changed my diet and started running every morning. I was down to 190 by May 2008. I think it was the weight loss that made me notice something wasn't right in my neck. I felt something abnormal so I went to see my doc. He told me right away I had a large thyroid nodule and sent me for an ultrasound to be sure. He did some blood work which came back normal. I should mention that at this time, I was feeling better than I ever have in my life. However, the nodules, one on each lobe, were too big for biopsy, they would have to be removed. So on May 20, 2008, my entire thyroid was removed. Because it turned out to be non cancerous (Hurthle Cell Adenoma), I was able to start on Synthroid the next day. My dose, 100mcg.

Now to reiterate, I had lost about 5lbs a month through good diet and lots of exercise (50 minute jog 5 days a week in the morning, weight lifting 4 days a week in the evening) and I was feeling physically the best I had ever felt in my life. After surgery I lounged around for a couple of weeks in recovery, then I got right back into my schedule. I continued to run every morning, but soon, when I would get home from work, I would just fall asleep. The times I did make it to the gym, I couldn't do anything. I could go on about the symptoms, but let’s just say it was rough, (not sure why I didn't realize that crying in front of my computer in the afternoons at work was not normal) but outside of the physical problems, I went CRAZY. At least that is what it seemed like. Sure enough my blood work would confirm that my dosage was too low. My TSH was around 29.

The impact of this would affect me for the rest of the year. I was on a great routine before, but my body couldn't handle it in this hypothyroid state, I slipped out of my schedule and even as I continued running in the morning, I wasn't losing any more weight, but I guess because I was never hungry I fortunately didn't put any on either. My routine was gone though and as my dosage was slowly increased, my appetite came back, from May-December my lowest weight was around 185. In the first week of November (after being on 100 then 150, then 175 mcg of Synthroid) my dosage was increase to 200 mcg. I was feeling GREAT, I certainly had a good appetite too, long story short I was up to about 192 by the time the holidays were over. But that was step one of this success story. I wasn't "crazy" any more, I wasn't lethargic, I wasn't having wildly uncontrollable mood swings, I was no longer losing fists full of hair, Synthroid was (is) working for me. I don't have all the numbers from my last blood work, but my TSH was 0.3 and all the others were close to the high maximum. At first I thought this might indicate I need a decrease in dosage, but I feel great and I have not had any heart palpitations or ever felt my heart racing and my doc agreed this is where I need to be.

Success two would be much harder, but quite frankly it was just as hard back when I had a normally functioning thyroid. Ultimately it is all about diet and exercise. Now that I felt my Synthroid was under control, it was time to get back on my diet and exercise routine. I was worried that it was just going to be so much harder than before, but really, it’s hard no matter what and not having a thyroid only affected me when I wasn't properly medicated. I'm eating right again and working out and the pounds are dropping off. I'm down to 182 and counting.

My whole point of this story is that if you are just starting on this journey, know that it can get discouraging, but it can get better. You may be in a bad place while trying to get back to "normal" but you will get there. If you are in such a hypothyroid state that working out seems impossible, then you HAVE to have a good diet and eat small portions until you get back to where you can take your walks or runs or lift weights or whatever works for you. And when you finally get to where you are feeling great again or for the first time, just know that not having a thyroid will not stop you from being in whatever physical shape you want to be.

Hoping I can keep someone from hating their surgeon for too long
Good luck,
Emilie

Dear Bronnie,

I too had hurthle cells and had to have a total thyroidectomy. It took me a few months to start to get my energy back, I'm 45. The weight gain has been frustrating. I gained about 9 pounds and have been following weight watchers, exercising 1 1/2 hours a day and can not lose a single pound. I'm still not considered "overweight" so my doctor keeps saying it's not a big deal. But at 5'6" and 157 pounds, I consider myself overweight. It's horrible.

I'll keep trying .

Anna

i know how everyone feels. when i was 5months preg with my 1st daughter (now 10yrs) i started to develop a large lump in my neck mostly on the right side. i went for my monthly doc visits and told them but no one ever said anything was wrong. well after two daughters and i found i was having another child and i went to the doctor for my 1st visit (new doc)and he looked at me and said "WOW look at that goiter in your neck" and this was the 1st time i knew what it was called or that it could be dangerous. he had me checked out blood wise anyway and put me on meds. well my son was born and same old meds well my son is now 7. about 3years ago i went to a new doctor because i was so tired all the time and i have major anxiety and well he changed my meds and sent me to therapy. since having my son i have packed on the pounds and i don't eat a lot bearly anything. well in May 2008 after repeatedly telling the doctor i knew something was wrong i sleep all day and cant work because i cant think straight and i feel like i am choking to death and i am single mother of three he gave me another lab test form to take more blood (AGAIN!!) so i went online and looked up a few things and decided on the bottom of the lab form to write thyroid antibodies just to see what it said. well low and behold after all the years of feeling like hell i find out i have very high levels and i have Hashimotos and my levels were out of control.

anyway i got VERY upset because this stupid doctor just kept upping my meds and never checked for anything else even when i told him there is something wrong he thought i needed therapy. so i tried to find another doctor well within the week i was looking (we live in a small town have to go over an hour out of town) i started to feel very light headed and massive migrane headaches so i went to stay with my godmother also where another doc was and when i went he instantly wanted me to go to hospital so i did. they said my levels were bad and and by then i couldn't bearly talk i was choking. they did the ultrasound and found that the right thyroid was so large is was growing over my traquia onto the left side and choking me to death. they also found a large tumor on top of my traquia and on the right side by now my throat was massive in size. they called an endocrinologist to get me that same day and he seen me and said i needed to have an emergency thyroidectomy so we went to the surgeon.

i was scared but i had known for several years something was wrong with me but no one listened till it was almost to late. i had my surgery and they removed everything however not without three surgeons being present because the day before when they did a last minute ultrasound they said that one of my nerves was growing inside of the right thyroid. so i got three pro docs doing this surgery. when i woke up they had wrapped my neck with a large scarf looking bandage and well i got another surprise that wonderful drain. the mass was so large that it left a giant void in my neck and i had to wear this drain for over a week which i wouldn't touch because i am not good with blood. my poor daughters (10 and had to help me wash my hair and body it felt like i couldn't hold my head up because according to the doc there was a lot of muscle inside that mass for so many years of having it which was now gone.

they removed the drain (not without me passing out upon removal) and that left a hole about the size of a nickle also. the one good thing was that they didn't use stitched or staples they used skin bonding so that the scar will be almost invisible (which is about 3inches long). however life hasn't gotten much better since the surgery i have to eat tums all the time for the calcium and i am tired all the time i don't eat and have been gaining weight like crazy and i feel sooooo sad and i don't have nothing to really be sad about. i am so moody i actually broke up with my BF because i was always grumpy and i hated being that way but it was like an alien taking over and i didn't want him to be affected anymore by my mood swings. i also get sick very easy and when i do i usually end up at the hospital because its like my body cant fight off anything anymore and even a common cold dehydrates me and i feel like i am in a coma. blood tests are monthly and i take Armour thyroid because i noticed that when i take just meds to cover T3 or T4 an the levels are diff it causes me major migraines so Armour covers them both and no migraines. my anxiety is still here not as bad but it has its moments but the doctors keep telling me things are good which i think is crap because how can things be good when you have no life because sleep is your life. you cant wear cloths because you keep packing weight on but they say its good i just laugh if they had this they wouldn't be saying that.

ok well enough of me i wanted to write this to let everyone know your not alone i am so feeling you but as far as what to do i don't know i am always wondering if there is anything we can do good luck everyone.

i just came back from the doctor and he has recommended a total throidectomy. Reading your various comments, i am now very scared that my weight might go overboard because pre operation, i weigh 97kg, what will my weight now be post operation - i think the solution will be to starve myself!

Guest wrote:

I wish I could help those who posted previously but I am in the same boat. I had my thyroid removed in 7/06; I began taking Synthroid in 9/06 and did not achieve a normal TSH level until mid-12/06. I gained 8 lbs after my surgery and in 9/06 began exercising 5x/week and eating an average of 1500 calories/day. I had not lost ANY weight by the end of 2/07. In 3/07, I had to stop my Synthroid for 7 wks in order to have another body scan, after which I gained 9 lbs, even though I continued with my "diet" and exercise regimen. I am so frustrated, I want to give up trying to lose weight. How long will it be before my metabolism will begin working again???? I feel very alone in this process. People with a thyroid complain of not being able to lose weight, but they have no idea what people who have no thyroid go through!

I had a total thyroidectomy 36.5 years ago. I have always carried excess weight due mainly to bad eating habits but the doctor found a cancerous thyroid tumor which was removed along with the parathyroid gland. It took about a year to get me regulated but was been doing fine since on a dosage of 200 mcg daily of Synthroid and the the generic Levoxyl. I had no radioactive treatments following the surgery but had yearly T series blood work. I got married and had 2 children. During the pregnancies, I had to drop my dosage of Synthroid to 100mcg daily due to the other hormone levels produced during a pregnancy. Approximately 22 years later, my primary care doctor after receiving my bloodwork back said my thyroid was too high so he lowered it, approx. a year later I had a lump show up on my neck. He put me on an antibiotic because he thought a lymphnode was inflamed. The lump did receed but I wasn't going to stop there, I asked for a biopsy. It came back cancerous. I was then referred to an Endocrynologist. He ordered a radioactive scan body scan which lead to requesting my history from the hospital where the original surgery was performed, he determined I should have an out patient treatment of radioactive iodine. I had that treatment and 6 months later repeated the scan, still showed trace activity so this was followed by an in patient radioactive iodine treatment which I was told could take up to a week to get out of the hospital. It depended on how quickly your body passes the radioactivity and that you are below a certain level before they could release you and not be hazardous to anyone around you. 3 months later, another body scan showed clear. I have repeated these scans yearly for 3 years then every 3 years after that. The procedures of preparation have changed over the years for the body scan. They now have an injection method which requires 2 injections of something, I don't know what, that allows you to stay on your thyroid medication while preparing for the scan. I believe your TSH level must be over 45 in order for he scan to be accurate. I am due for another scan soon but don't expect it to show anything. I am still battling my weight which will always be a problem for me but I have found that I can and do lose weight with regular exercise and I have followed WW program and have been successful with it. It is only when I get off track that I get back to my old habits which cause the weight gain.

I had thyroid surgery in March of 2008 for papillary cancer. I have not gained any weight. I actually lost 10 lbs due to the fact that it took me so long to chew and swallow my food. I have since gained back 5 lbs. My TSH is very low, but my doctor said it should be that way. I am not hyper at all. I have heard people say that they are surprised that I did not gain. I do watch what I eat and excersise, but not any differently than before my surgery.

Guest wrote:

I had thyroid surgery in March of 2008 for papillary cancer. I have not gained any weight. I actually lost 10 lbs due to the fact that it took me so long to chew and swallow my food. I have since gained back 5 lbs. My TSH is very low, but my doctor said it should be that way. I am not hyper at all. I have heard people say that they are surprised that I did not gain. I do watch what I eat and excersise, but not any differently than before my surgery.

Hi there, I'm glad to hear that you're gaining back some weight which is good, but are you happy with that? I'm not sure if I can tell from what you're saying in the post. Let me know okay?

I just returned home 4 days ago from a thyroid/lumpectomy operation where one-half of the thyroid was removed due to a large benign nodule. My doctor believes that the remaining portion of my thyroid which is healthy will 'kick in' and compensate for the missing part.
This does not make sense to me nor do I believe it. He doesnt believe meds will be required.

The kicker is I've spent 8 months of this year losing 30 hard lbs by walking 5 miles/ day, 5 days a week. Also cutting way down on portions with the advice of a qualified nutritionist. I'd hate to see all this hard work fall to the wayside with fatigue and weight gain.
I'm in my mid-50s, so I am concerned. A friend of mine told me after her own experience to see an endocrinologist.
Anyone have any experience to help me?

redhatglad wrote:

I just returned home 4 days ago from a thyroid/lumpectomy operation where one-half of the thyroid was removed due to a large benign nodule. My doctor believes that the remaining portion of my thyroid which is healthy will 'kick in' and compensate for the missing part. This does not make sense to me nor do I believe it. He doesnt believe meds will be required. The kicker is I've spent 8 months of this year losing 30 hard lbs by walking 5 miles/ day, 5 days a week. Also cutting way down on portions with the advice of a qualified nutritionist. I'd hate to see all this hard work fall to the wayside with fatigue and weight gain. I'm in my mid-50s, so I am concerned. A friend of mine told me after her own experience to see an endocrinologist. Anyone have any experience to help me?

I think that you should see another doctor, to be honest. I think that it makes sense, but you don't believe your current cdoctor. You definitely need a second opinion to be sure, okay?

i had a subtotal thyroidectomy in Jan 06...I am currently on 4 grains of Armour Thyroid..my TSH was 0.001 last i checked...not losing weight...I have gained 25 lbs since my surgery. Very Difficult to lose weight..