TOTAL THYROIDECTOMY - HASHIMOTO'S AUTOIMMUNE DISEASE - VERY BAD RECOVERY

I am new to this blog, but after reading what most of you are going through, I felt compelled to join. In 2010, I began experiencing hyperthyroid symptoms, was found to have a nodule, biopsied and positive for Hurthle cells and next thing I knew I was going into surgery for a left side thyroidectomy. I was not immediately put on a thyroid replacement...it was about a year later, I started following with an endo and he put me on Synthroid 25mg which made me feel nauseated and jittery. I was changed to Tirosint 13mg which has worked pretty well up until the last few months. I returned to my endo in June this year for a f/u ultrasound on the small goiter I have on the right side and he found a new "something" forming in my right side thryoid gland. This is a change from the previous biopsy done in Dec. 2011. He did bloodwork for the thyroid anitbodies which came back normal/negative, but informed me that Hashimotos usually presents by biopsy with Hurthle cells presents which is what I had in my left side thyroid and resulted in surgery. He feels I have Hashi's even though I am not showing antibodies.

There are days when I feel so completely weird...tired, sleepy, confused and in a fog. Prior to all this, I had always been a high energy person...working out, going on vacations, and riding my horses which has been a lifelong passion...I no longer have much energy or spirit for any of the before mentioned. I feel overwhelmed and depressed and can't understand why I can't get the old me back. I am 39 years old and feel like my life is at a standstill. I am currently going through some moments of being jittery and having palpitations and at other times, I am cold and my heart feels like its all it can do to pump. I am a carrier for hemachromatosis(too much iron in blood) so I can't take vitamins containing iron supplements so I'm not sure what I should take. When I ask my endo about diet or anything of that nature, he has no suggestions whatsoever.

I feel for each and every one of you that is going through this thyroid fiasco...and while I hate that you are too suffering, it is comforting to know that others are out there going through this too and that maybe I am not crazy after all.

I welcome any and all suggestions! :)

I HAD A TOTAL THYROIDECTOMY DUE TO HASHIMOTOS ON APRIL 20, 2012. I TOTALLY UNDERSTAND WHAT YOU ARE GOING THRU CAUSE I HAVE BEEN GOING THRU SO MANY OF THE SAME THINGS. IN YOUR LAST PARAGRAPH WHERE YOU MENTIONED THAT YOU FELT THE NEED TO BE ADMITTED TO THE NUT WARD AT THE HOSPITAL....WELL, I TOO WENT THRU THAT AND I TOLD MY DR. I HAVE HAD SO MANY SYMPTOMS JUST LIKE YOU. I HAVE HAD THE BRAIN FOG, MEMORY LOSS, CONFUSION, LACK OF CONCENTRATION, DEPRESSION, BEING SO EXHAUSTED AND WITH NO MOTIVATION TO DO ANYTHING WHATSOEVER. I TOO DO THE VERY LEAST OF THINGS AS FAR AS HOUSEHOLD CHORES. MY HOUSE LOOKS LIKE A DUMP SITE NOW. I TOO HAVE NO DESIRE AND DO NOT EVEN CARE. I JUST WANT TO SLEEP BUT MOST OF THE TIME I HAVE INSOMNIA EVEN THOUGH I AM SO TIRED AND REALLY FEEL THE NEED TO SLEEP. I REALLY DO NOT KNOW WHAT TO TELL YOU CAUSE I HAVE NOT BEEN GIVEN ANY ANSWERS EITHER. I AM ON THE LEVOTHYROXIN 100 MCG. I HAVE NO IDEA HOW LONG I HAD THE HASHIMOTOS ? MY THYROID WAS IN THE SAME SHAPE AS YOURS WHEN THEY REMOVED IT. I ALSO SUFFER FROM ANOTHER AUTOIMMUNE DISEASE CALLED ''SJOGREN'S SYNDROME" WHICH ATTACKS MY ENTIRE BODY. I TRIED MEDS FOR IT BUT WAS UNABLE TO TAKE THEM. I WAS DIAGNOSED WITH IT 4 YEARS AGO AND HAVE HAD 10 SURGERIES SINCE. I JUST FEEL LIKE I ''DO NOT HAVE A LIFE ANYMORE''. I WISH WE COULD GET ANSWERS AND HELP BUT I DON'T KNOW IF THAT IS EVEN POSSIBLE AS THERE IS REALLY NOTHING THAT CAN BE DONE FOR AUTOIMMUNE DISEASES AND LITTLE IS KNOWN ABOUT THEM. I AM SORRY I WAS NO HELP TO YOU BUT I WANTED TO LET YOU KNOW THAT YOU ARE NOT ALONE.

Hi!  I'm new to this group but not new to Thyroid Problems.  I was diagnosed with Hashimotos when I was in my twenties.  I've also been diagnosed with quite a few other autoimmune disorders.  Like both of you, I had my thryroid out almost two years ago.  I've also had a very difficult time.  I really want to let anyone know that has Hashimoto's to be careful because Type 1 Diabetes goes along with it many times.  I had my thyroid out because the Hashimoto's had finally destroyed any function in it and it was so swollen it was choking me at night.  I had suddenly gained fifty pounds and had no energy.  I've been on disability for ten years because of the Hashimotos, Fybromyalgia, Degenerative Disk Desease and other weird autoimmune issues.   Since the surgery, my thyroid levels have been up and down.  I lost hair all over my body....as I would wash it, I felt like I was losing handfuls.  I had not been told this is normal after the surgery.  I lost weight and then nine months after the surgery I became very ill and was rushed to the hospital to find out I was in Diabetic Ketoacidosis.  I had developed Type 1 Diabetes which is also an autoimmune disorder.  The doctor said if I had not gotten to the hospital within two hours I would have died so to all of you who have Hashimoto's be careful.  I had a very good primary care physician that just left for a promotion.  She realized that it was Type 1 diabetes from many of the symptoms I had or I would still be treated for Type 2 which could have caused some major problems.  I didn't know diabetes could be so deadly.  I still have no energy and wish that I could say that I am much better but I'm not at this point.   I asked my endocrinologist what happens to the antibodies after you have your thryroid removed and she said they never went away.  That you still have the antobodies?  I'm not quite sure what that means so if anyone knows please let me know.  I'm in the process of getting an insulin pump which I'm hoping will help get my diabetes under control because I've spent too many visits to the ER and had to call an ambulance a week ago because my insulin bottomed out.  I'm trying to bring about awareness that diabetes can go along with Hashimoto's because I would hate to see someone lose there life over it.  I am currently fighting a battle with my private disability company while going through all of this - I could use any prayers at this point in my life.  I was a Financial Controller, I loved to hike, exercise and had all kinds of interests before all of this happened.  Now I'm just trying to fight for my health and my disability.  It's good to know that I'm not alone but I wouldn't wish this on anyone.  I wish you all of the best!  Please keep a careful watch on your sugar!

What about your Vitamin D levels ? Do you have it checked ?

Who was your Doctor? Has the thyroidectomy made the difference in the long run?

2007 The Dr took my complete right side out first: the thyroid was wrapped around my voice box and esophagus, then spread to the side of the neck wrapping around cartiod. The surgeon told me it would be a 2 hour surgery turned out to be over 8 hours. This was just the right side! Then I bounced back fairly quickly, then the left side started swelling. She went back in and removed the left side completely. This surgery took 4 hours not as long but I was having trouble regulating my t numbers. 7 Years later I have come up with a damaged liver, diabetes, and my body feels like it is on fire all the time. My memory is gone, weight loss, kidney problems, unexplained fevers severe headaches and body constantly is in pain. ALL THE DRS. DO IS MORE DRUGS CAUSE THEY ARE AT A LOSS.

You listed everything I am feeling. I had a TT in 2002 for large goiter and DX of Hashimotos. After years of feeling horrible, and gaining 50 pounds I started reasearching. I switched to Armour two years ago I felt immediately better for about six months.so I did more research and went gluten free in 11/2013 I never lost a pound. Then 3/2014 I added low carb and sugar free (refined sugars) I did not loose an ounce and still had all the symptoms you listed. No Doctor understood my labs were good but kept fluctuated. I stuck with the diet as it did help some and convinced my Doctor to let me try a new weight loss medication. He was very reluctant but since I suffered from 12 to 15 migraines a month and the medication was part migraine med and I wasn't sitting around eating chips and ice cream he would let me try. Fast foward to 10/2014 I am down 50lbs! Off the med since 10/2014 and maintaining. But for the past two months slowly all the symptoms have been coming back. As of today I just don't know what to do! I was on probiotics digestive enzymes, Vit C collidal silver. I did stop all of them three days ago I started back. I have been reading about Adreanal fatigue.HELP

All of what has been said here applies to me as well. I had a TT about two years ago and when the surgeon got in there, he found that my thyroid was wrapped around my voice box and esophagus and was much larger than he could tell from the tests he had run beforehand. This was no surprise to me because I could not swallow around it and it was getting hard to breathe. Since my surgery, I have gained 100 lbs. I was first put on Cymbalta for my fibromyalgia and sythroid 175 mcg. I also took Lyrica but it gave me jerking and shaking motions and my doc took me back off because he said they are permanent and may even get worse. I almost feel like I have Turret's sometimes. It is mostly when I am falling asleep. I can't tell you how many times I have thrown my computer on the floor or kicked my husband while we try to lay together to fall asleep. Along with all this, I had a bad hip operation which needed revised about 5 years ago and I just had my first knee replacement on the same side. I also have disk disease of the spine and three ruptured disks in my neck and lower back, carpal tunnel and a rectocele which comes from trying too hard to move your bowels, due to pain medicine causing severe constipation. I am on disability and it takes me at least 2 pain doses to feel well enough to get out of bed. I am alone all week because my husband is a truck driver and I get very lonely and depressed during the week. My latest scheme to lose weight is my elliptical machine which has been moved to the living room for easy access. I have tried weight watchers and after 5 months I lost 6 pounds. I'm hoping the elliptical machine will boost something off of me or help my metabolism or something. I am already taking vitamin D and Clonazapam to sleep, but I only sleep for 3 hours, and then I am up. I fall back to sleep easily and I have sleepwalked many times because I forget that I am still under the influence of this drug when I get up to go to the bathroom. I used to be full of energy and wore a bikini up til my 40s. I ran and walked and played women's soccer and then the bottom fell out of my world with my hip. As I said, I an on disability, having been fired from my last two jobs as CHURCH SECRETARY, because of my lack of concentration and I would make a mistake in the bulletin and it was the end of the world. I came on this site because I wanted to find out if there is any secret to losing weight after a TT. Oh, yes, I am afraid I have the beginning of diabetes because I have the worst burning foot pain. Some days it is the worst thing that hurts and beats out my hip, back, hand and knee pain. I also will go 3 days sometimes between showers because it is such a colossal chore to wash a body that seems the size of a whale. I am exhausted when I get through with my shower. I am a Christian and I try really hard to remain upbeat and thankful for my blessings for I have many, including a husband who takes care of me when he is home and not sleeping.
I feel like if I could just lose the weight, many of the other things may abate but I am just stuck here. What is the secret????

Gluten free is absolutely necessary with Hashimoto's. This is because it mimics the thyroid tissue and so increases the autoimmune response. there are some excellent sites which recommend what to eat and what not to eat, to counteract the negatives of living with Hashimoto's disease. My TSH halved and my antibodies reduced by over 2/3 just by eliminating gluten from my diet! I highly recommend it as a way to easily minimise and manage your symptoms.

Have you tried natural thyroid hormone! Ask your dr to get on Armour Thyroid. It has changed my life. Also eating well and exercising will help. And I take juice plus which are fruits & vegetables blended into gummies. I am getting u servings of fruits and veggies through that and also trying to eat healthy. I have had Ht for 14 years.

You will get better if you get the right homeopath or endo. I promise. You need someone who will put you on Nature-throid or Armour. If your doctor doesn't believe in these meds, move on. It will take about 6 months to get on the right dosage(adjusting every 2-3 months , getting your tsh under 1.5) and you will probably gain weight till you find it.

Doctors have the magic number where our tsh is supposed to be, but it doesn't work if you've had a thyroidectomy. You will regain your life if you find the right doctor. Don't give up!

I was told I have fibromyalgia, but all my symptoms disappeared after my TSH was under 1 and my t3 was lowered.

How are you feeling one year out? I am scheduled for a total thyroidectomy on 7/7/17. I am so worried I am going to feel worse. I also have a suspicious nodule so they are taking it out. They could take out half, but he said the number of nodules & the high antibodies, makes him think taking the whole thing out would be good. Thanks!