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Who all had thyroid removed

Karengann profile image
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Hi I am having my thyroid removed on the 22nd could any help me understand what happens after sugary

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Karengann profile image
Karengann
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63 Replies
avb1234 profile image
avb1234

I did back in Nov 2014... had the op at 9.30am... was leaving hospital by 2pm. It is very quick. You have a dressing on for a few days and then go back in to have your stitches out. I started on 100mg of levothyroxine... Over 6 months it got to 150mg. To honest I couldn't tell the difference now pre and post thyroidectomy. I know a lot of people have issues but many don't (they just don't post often 😊). Good luck!

Mmw-15 profile image
Mmw-15

Hi I had a total Thyroidectomy 3 weeks ago and was extremely nervous, however everything went well, after the surgury I had a sore throat, my neck felt stiff and obviously felt groggy from the anaesthetic. My family was there when I was brought back to my room and I was speaking to them. The one thing I remember was when I came round in the recovery room was the surgeon walking towards me and saying "speak" which was to check if my vocal cords were still ok. I had numerous blood tests to check my calcium levels and thankfully everything has gone well, it's been 3 weeks now and I'm feeling good, my scar is amazing and I cannot believe that I'm actually starting to feel like my old self again after an awful year. I'm seeing my surgeon tomorrow for my follow up and to get my resent blood results. Good luck with everything, if you need support or any other advice then please message me, so far my story has been a positive one so I'm glad I could answer your question xx

Mmw-15 profile image
Mmw-15 in reply to Mmw-15

Sorry forgot to mention I had glue on my scar so no stitches and the need to remove them, my scar looks great just a smiley line which I know will hardly notice soon. Good luck again xx

Julia1234 profile image
Julia1234 in reply to Mmw-15

That's awesome!!!

There is nothing to be scared of. I had mine removed last May 2015 went down at 4.30pm and was back at 8pm. Purple glue over the wound, no drain put in but some people do have .

Started on 150mcg thyroxine lost half a stone, then after bloods and review with surgeon went to 125mcg.

I must admit I have had side effects but you might not .

Dry skin, muscle tone loss and bad sleep pattern.

Even though I lost 7lbs I have a midriff swell which apparently thyroxine gives you.

Hope I haven't put you off I didn't intend to. Just wanted to give you my experience. Good luck

faith63 profile image
faith63 in reply to

no..low thyroid gives you that. Good luck getting properly treated.

ghana60 profile image
ghana60

Good luck with it all :-)

snow31 profile image
snow31

Hello.

I am 2 1/2 weeks post total thyroidectomy. I too posted on here asking for reassurance and I was very scared before.

I have to say I have had a good recovery to sone extent.

I had a bit of problem in recovery but think it was more me than the surgery. Surgery took 2 hours and voice was great the next morning. I was in for 2 nights. I had 2 drains which were taken out the next day. Scar is amazing. I have taken photos to see the difference over the 2 weeks. It's incredible how well it heals. I had 7 staples in and they were taken out after a week and that doesn't hurt.

My calcium levels did drop on the 2nd blood test so am now on 1000mg calcium 3 times at day. has now risen so will see how long I'm on them for. Easy to take as dissolvable.

I am now on 125mg of levothyroxine. Which I'm taking on waking. I so hope I can lose the weight that went on suddenly last year :)

So far everything has been so much better than I feared. Just remember that you have to rest and be kind to yourself.

Please message me of you need anything else.

Good luck and hope all goes well

Julia1234 profile image
Julia1234 in reply to snow31

Glad you're doing well😊

Wiggywaggywoo profile image
Wiggywaggywoo

My experience also a very good one. I amazed the ward staff by wanting to eat a hospital sandwich within about an hour of coming round from anaesthetic! Neck was a bit stiff and I worried I might rip the stitches at night, but I didn't and the scar is now completely invisible after 2 years. 125 mg of Levothyroxine since surgery hasn't changed at all, and since getting over the operation itself I have returned to my usual levels of energy and fitness. Look after yourself for a couple of months is all I would suggest.

sandy55 profile image
sandy55

I had mine taken out in Jan of 2010. It was an overnight stay. Just left me with a sore throat for a few days. They started me out on 75mcg of Levothyroxine. Adjusted to 150 which has maintained my tag numbers at a healthy level. Med has to be taken 1 hr before meals. God bless you as you have your surgery.

4Alexandra profile image
4Alexandra

I had mine removed in 2005 in Athens, was in for 1 night and this was only because the surgeon was delayed and the op itself didn't happen as early in the day as planned. Don't remember any real discomfort, very small scar about 2ins, can't see it at all as he thoughtfully did it in a natural crease line. I had dissolvable stitches and it all healed well and quickly. Put on 100 thyroxine went up to as high as 125 but never really felt well, and also put on weight. Eventually in 2012 had more stomach surgery, (result of a botch job in Ronkswood hospital, Worcester)and have since learnt from keeping records, that when my T3 was on the floor I felt dreadful. Do check your T4 and T3 levels, the TSH usually done in UK tells you nothing. The important thing to remember is that your body has to convert T4 which is thyroxine to the active hormone T3. Many of us don't do that and you then need to take T3. However, many UK Dr's and endroconologists don't appreciate this fact. Natural Armour taken from pigs thyroid does of course have T3 in it and often works well for many. T3 in UK I believe is expensive something like £150 a go where as here in Crete I pay €1.15 a packet. Do also get your irons checked out particularly B12 and D3 which need to be optimal not in "the range" as so usually quoted. This is a must if by any chance you are vegetarian or don't eat red meats. Am sorry to say that those of us without a Thyroid often get put into the same category as those with a malfunctioning thyroid gland and our needs are obviously different. The Op itself is nothing to worry about its getting your levels right after that can be the problem.

NadeNud profile image
NadeNud

Hi

The above post is very informative. I'd also recommend buying 'Stop the Thyroid Madness' to further inform and protect yourself from the incompetence of some doctors you will probably encounter.

In my case, I was on 100 for 3 years until hypothyroidism kicked in and I had no idea! I just thought I was deficient in vitamins as I suffered severe fatigue and sharp, painful cramps. Also, these symptoms mimic depression as your metabolism will under function.

I kept asking doctors why so one cut my dose to 50 and sent my TSH to 24. This means my brain was starting to shout loudly for more thyroxine that my body could not produce. I then complained about this doctor who had dismissed the fears I voiced. However, her treatment was deemed acceptable and I was kicked out of the surgery.

Sorry for the negativity. If I had educated myself immediately I would not have suffered...

Also, my dosage needs have fluctuated and it can be very difficult to convince a doctor to look beyond the TSH results.

Good luck and be in control of the thyroid - don't give your power away.

lorrainecleaver profile image
lorrainecleaver

I had mine removed nine years ago and it was a total and utter nightmare. Post surgical hematoma, was suffocating, had my wound cut open wide awake in the corridor, second emergency surgery there and then which lost me my parathyroids.

Not saying this to scare you, but forewarned is forearmed. Do your homework, ask the surgeon how many of these operations he has done in the past year and how many resulted in adverse events. Ensure there are regular checks on your vitals and especially that your neck drains are gathering fluid and your neck not too swollen. Report any tingling or pins and needles immediately as calcium can plummet and lead to tetany.

Hopefully all goes smoothly and you will be fighting fit, ready to battle for sufficient thyroid hormones afterwards!

lorrainecleaver profile image
lorrainecleaver

I forgot to say, I was supposed to be in for one night, ended up in there for nine days as my calcium kept plummeting. I realise I had a very bad experience and most go smoothly but I wish I had been far more curious about the surgeon and hospital procedures before signing on the dotted line.

NadeNud profile image
NadeNud

Why are you having your thyroid removed?

NadeNud profile image
NadeNud in reply to NadeNud

Just read your other post.

Karengann profile image
Karengann in reply to NadeNud

Have trouble breathing so they put on oxgyen and it getting bigger and can't swollow food with out getting choked

NadeNud profile image
NadeNud in reply to Karengann

Good luck with the operation. That part wasn't too bad and recovery was quick. I had discomfort swallowing for a day due to the breathing tube but that was all.

Just recommend knowing your blood results. It took me over 3 years to wise up but you have found this forum now so you will have great patient support

Rosie2-2 profile image
Rosie2-2

Can I just ask why you didn't have radio active iodine as my surgeon recommended that for me and not surgery?

Karengann profile image
Karengann in reply to Rosie2-2

I have 9 year old boy and they think it be better instead of that

maggykriti profile image
maggykriti

My surgery was in 2002 and my total thyroid gland and isthmus were removed. I was in hospital for three days.

I had a difficult time for a while afterwards being told that the surgery would answer all my health issues, that is 10 years of M. E. which left me unable to work and bedridden after one year.

After surgery with thyroxine only I was left a zombie. I was helped by a doctor who has now died and now have NDT and T3 on the NHS. I have a life, maybe not what I might have had but it is good.

After total thyroidectomy you need the hormone replacement which suits personally and gives the best quality of life.

I do wish you well.

SilverAvocado profile image
SilverAvocado

It's great to hear all these people saying they had a smooth experience. I had mine out in 2013, and have not got stable in medication in that time. People aren't mentioning the reason for removal, mine was for follicular cancer, followed by RAI, and I had a fair amount of fatigue in the year or 2 leading up to it, too, so that might be partly why it wasn't so straightforward.

The OP itself (I actually had 2) was very easy. I never really had any pain (although as other say, Stock up on painkillers - I did take paracetamol every day for several months afterwards, it seemed to help with other symptoms as well as discomfort). It's also good advice to have straws or sports bottles to drink from. You will have a wound on your neck for some time, which does limit movement. I felt the same with pillows, because in some positions you end up having a lot of the weight of your body pulling on your neck, so you need comfortable soft pillows to stop that from happening.

Different hospitals run it different ways it seems. I stayed in overnight, but was let out early the next morning. Then I saw my surgeon again after ten days. I examine the wound, and every few weeks for a while afterwards. I had a single stitch in mine, and had it bandaged constantly. After a while I changed the bandage myself. It's a bit of a pain to keep things dry in the shower.

Do watch out for a doctor who doesn't know much about thyroid replacement. You will be dependent on thyroxine for life, as you won't have a thyroid to produce any of your own. So it's important to get it right. This forum is a great place to find information if you are not getting the right medicine. I personally have been through two private doctors, many dose changes, and am now starting to self medicate and think I am on the right track. You may have to do some of these things if your health doesn't get back to normal within a few weeks or months.

Karengann profile image
Karengann in reply to SilverAvocado

Thank you

SilverAvocado profile image
SilverAvocado in reply to Karengann

A couple more tips of you are going to stay inhospital - make sure you've got nice slippers as you may be walking a long way to the toilet. Everyone seems to have them!

The food will probably be terrible! I wanted to be eating fruit and veg after my surgery, which you probably won't be offered. My emergency kit is a soft fruit that's easy to chew like plums, Bagged salad so you can add it to sandwiches or other meals, and chocolates for if you need a quick boost. I found we were often not fed and at times I was starving - some nurses and shifts are a lot better than others . With some you will not get food, meds, lights out at appropriate times. With others you will :)

brfran profile image
brfran

I had mine removed on Dec 22nd, here in France. Two nights in hospital, one before and one after. Then I went home by train, which was tedious, as I had chosen a hospital a long way from home.

On Levothyroxin, 150mcg they got the dose pretty much right straight away, though I may look for some fine tuning one I have all my vitamin levels up, if I think I need it. Intradermal stitches, self dissolving, scar now nearly invisible. Pain? A little the next day, just paracetamol for two or three nights, and good pillows. My voice could be better, lacking the higher register probably due to bruising , but it's coming back slowly.

And now for the really really good bit

Scroll down

Further

I got my flying medical back yesterday and today I took our Supercub out for the first time since November, and had a great flight. YEEHAA!

So quite a lot of people have no problems, it's just that those who do are more likely to be on fora. Please don't think I'm knocking this forum, it is THE place to come for information. It's just that a lot of people do fine right from the start, but we hear from those who don't.

Binkie profile image
Binkie

i had mine removed 2009 the surgery was easy, 4 nights in hospital, i was fine and comfortable. My problem was after surgery, no one told me i would need thyroid replacement therapy!!! i became very ill but on road to recovery now. Get educated get informed not all drs are knowledgeable as i found out but the surgery was fine, recovery painless, you will be fine xxx

faith63 profile image
faith63

it is not necessary to remove the thyroid due to graves. Graves is an autoimmune disease, the problem is with your immune system. There are medications to stop the symptoms, why you find a cure. You will still have a sick immune system after surgery and unless addressed, could go on to developed other autoimmune disease.

This is what i am doing for my Hashimotos. Last summer, i spoke to someone about thyroid removal, i was so desperate.

drhyman.com/blog/2010/07/30...

bantam12 profile image
bantam12 in reply to faith63

Faith sometimes it is necessary to remove the thyroid, for some people symptoms of Graves are not controlled by medications.

faith63 profile image
faith63 in reply to bantam12

i don't agree..unless it is someone totally unable to breath. But, you can get rid of it with functional medicine.. i would rather do that.

bantam12 profile image
bantam12 in reply to faith63

Have you had Graves and suffered the symptoms ? I have and medication did not work for me, I was in my teens and after many relapses I had to have surgery as my heart was badly affected.

faith63 profile image
faith63 in reply to bantam12

i have hashimotos and had the heart issues..resting heart rate in the 100's, put on beta blockers, weight loss, diarrhea, choking, kidney and blood sugar problems, liver problems..then the extreme opposite, retaining fluid, also effecting my heart, also effecting my liver and kidneys. Seen 30 doctors for my symptoms, in 8 years.

bantam12 profile image
bantam12 in reply to faith63

So what are you doing to fix it ? Surgery and RAI fixed me ☺

faith63 profile image
faith63 in reply to bantam12

just started healing my leaky gut, in order to get rid of my hashimotos disease.

drhyman.com/blog/2010/07/30...

read about what is autoimmunity and why it occurs..

faith63 profile image
faith63 in reply to bantam12

it didn't fix your root cause or autoimmune disease.

faith63 profile image
faith63 in reply to faith63

WHY THYROID PATIENTS NEED TO WORK WITH A FUNCTIONAL MEDICINE PRACTITIONER

This works for all autoimmune disease as well..

from Dr. Isabella Wentz:

For those of you not familiar with Functional Medicine, according to functionalmedicine.org, “Functional medicine addresses the underlying causes of disease, using a systems-oriented approach and engaging both patient and practitioner in a therapeutic partnership”.

That’s right, a whole medical specialty dedicated to finding and treating underlying causes and prevention of serious chronic disease rather than disease symptoms. I was tickled pink when all of the presenters were talking about treating the root cause of diseases!

When I first set off to treat myself with a systems perspective and to find the root cause of my condition, I did not realize that I was using a functional medicine approach, I just believed in cause and effect.

The basic theory behind functional medicine is as follows:

Food is information. Beyond calories, the type of food you will eat will help determine if you are going to be healthy or sick. Functional medicine practitioners realize the value of a whole foods based diet as well as the role that inflammatory foods and food sensitivities can play in chronic disease.

Stress is a precursor to disease and weakens our body causing it to break down and makes us more susceptible to chronic infections.

Proper gut function is key to a healthy body.

Here is a glimpse of the information the attendees learned in the GI module:

If you work with the gut 60-70% of any disease will get better

The best way to give your patients the right treatment and diagnosis is through listening to them (I love that one!)

Treat the gut before attempting detoxification, as the gut is a main elimination organ, detoxification first may result in toxins circulating when gut function is impaired.

Irritable Bowel Syndrome (IBS) is a precursor to autoimmunity and chronic disease.

This last one really resonated with me, as I was diagnosed with IBS in 2002, Hashimoto's in 2009. Many of you may have never been diagnosed, but have had many of the symptoms. My IBS and GERD helped me connect the many dots to get to my root cause.

If we can catch IBS in the early stages, perhaps we can prevent thyroid and other autoimmune conditions. Additionally, since we understand that IBS is a precursor for the thyroid condition, treating the root cause of IBS will often result in remission of the autoimmune condition.

During the conference, three cases of IBS were presented, the root causes of these cases of IBS included:

Case #1: parasite

Case #2: pancreatic enzyme deficiency, gluten sensitivity, overactive stress response

Case #3: low stomach acid, small intestinal bacterial overgrowth

FUNCTIONAL MEDICINE CLINICIANS GET IT!

Now that I understand functional medicine, I am amazed that most traditionally trained physicians don’t recognize this links between nutrition, stress and gut imbalance that cause chronic illness.

bantam12 profile image
bantam12 in reply to faith63

Sorry but it did, I don't have and never had any other autoimmune problems, you can of course follow your belief but its not helpful to force it on others.

faith63 profile image
faith63 in reply to bantam12

omg..Graves is autoimmune!

bantam12 profile image
bantam12 in reply to faith63

Omg... I know !

faith63 profile image
faith63 in reply to bantam12

i put my info out there to help others, it was not forced on anyone. How could i force someone to read something? you didn't read it.

Karengann profile image
Karengann in reply to faith63

I couldn't breath that why they put me on oxgyen full time

faith63 profile image
faith63 in reply to Karengann

i don't really understand why it has gotten so far..there are meds to use, to shrink goiters and enlargements etc.. its just that the only thing that keeps me going, is knowing that one day i can get off of thyroid meds and get rid of the hashi's. Doctors don't know how to treat hypo, which you will be forever.

Karengann profile image
Karengann

I have tryed different meds but still not working I have 3 kids to take care of can't be sick all the time and full time job that I had to stop working cause oxygen and I can't enjoy my kids cause I can't go out and do things with them.I have made my mind up and the doctor think it best for me to have it removed

faith63 profile image
faith63 in reply to Karengann

The same things happen when hypothyroid. you will need proper testing. Ask your doctors how they will treat you when you are hypo. Will they test free t4, free t3, reverse t3 etc..? Do they dose by symptoms or by labs?

I feel like i am short of air and choking, but it a spasm in my esophagus, oxygen levels are good. Your doctors let this go to far, is my opinion.

bantam12 profile image
bantam12 in reply to faith63

Faith you don't seem to grasp the fact that sometimes meds don't work, its not a case of letting things "go to far". Karen and her doctors have made the decision that is right for her, she is asking for positive feedback on surgery, she doesn't need the negative comments.

faith63 profile image
faith63 in reply to bantam12

You need to tell everyone else this too, then. We are just trying to help her to understand it is a totally last resort..after everything else has been tried and i don't think this has been done.

Yes, she needs/negative/honest comments and concern. I have lost my health because of doctors. My life is no life.

faith63 profile image
faith63

are you in the US? Not heard of a UK doc testing all of those.

stockman27 profile image
stockman27

HI no problems with the surgery but do you really need it all removed. Can they take out half of it. I have had terrible problems with NHS thyroid T4 and now I take armour with has given some life back. I hear there are people out there that do not have any problems and I hope its you.

take care

John

bantam12 profile image
bantam12 in reply to stockman27

Problem with a partial op is that the remaining half can still relapse and cause further problems, that is why they prefer to do a total these days.

Karengann profile image
Karengann in reply to stockman27

Yes cause I nodules on both sides

faith63 profile image
faith63 in reply to Karengann

nodules are treatable..

thyroidx100 profile image
thyroidx100

Good Luck. I had my right thyroid taken out 17 years ago. Two years later I started choking when to doctors 'you all right nothing is wrong ' few days later started fainting then contacted the thyroid group and someone there wrote me a letter to take to the doctor did that and the doctor sent me to the hospital. Arriving there I was sent for a scan then a surgeon came to talk begging me to let him do the surgery I said yes wondering why ? Next day my left thyroid was out. The surgeon came to tell me that was the biggest thyroid he had seen that is why he wanted to do it ....my left grew to the right, he than said 'now I cannot look after you you have to go back to your own surgeon. My calcium gland was also taken out . For two weeks it was hard showering and bending my neck but one gets used to it. Tablets 150mg is okay. Most are fine but most are not...... but me my whole life changed.

I wish you all the best xxxxxxx

faith63 profile image
faith63

trend..if you have below range TSH, then the problem is with your Pituitary. High above range, is thyroid.

faith63 profile image
faith63

What dose the TSH look like now?

faith63 profile image
faith63 in reply to faith63

Did they tell you that you were hypo or hyper?

faith63 profile image
faith63

yes a low tsh could indicate hyper. How do you feel?

faith63 profile image
faith63

me too, with the feet and i can barely walk on them, it is so painful. Thyroid meds make no difference..dose or type of med.

faith63 profile image
faith63

my feet feel like they are swollen inside, like there are hard rubber deposits in there, with pain. Can barely walk for the past week..another flare up, but swollen and extreme fatigue too, all over swelling and my skin hurts.

faith63 profile image
faith63

i have had this, along with many other symptoms, off and on, since 2010..seen every specialist..2 neurologists, one podiatrist. Am seeing a functional Medicine Doctor now, but unable to reach her regarding this flare up. I have no GP.

faith63 profile image
faith63

Thank you. I wish you the best too..at least we are not alone in all this.

Try and contact Shaws, on this forum about t3 only for body pain. Dr. Lowe cured his patients with t3 or ndt.. maybe this would help you because i have no doubt the thyroid meds aren't right or not converting or getting to your cellls.

faith63 profile image
faith63

me too and tirosint and t3, 2 kinds of ndt, which made me worse..hyper symptoms on very small doses, now t3 only..it isn't enough. This is why i know i will not be well until i get rid of this inflammation and autoimmune disease..Hashi's..which is caused by my leaky gut.

kaula profile image
kaula

i had one I stay in the hospital for 3 day

faith63 profile image
faith63

drhyman.com/blog/2010/05/20...

start here for info..

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