terrified about upcoming thyroidectomy...scared of life afterwards...could really use some positivity

okay long and the short of it: goiter full of nodules and hashimotos and possibly cancer....really scared of life after the surgery...everything i have read on the internet is so negative about life being terrible afterward with chronic fatigue depression and weight gain...and my life is already shit anyways i am in my early 20's and had to leave college and i feel so tired all the time and i have for years and i'm so afraid of that getting worse and i'm already at my wits end like i really can't handle anymore i just need to know that there's hope for things to be better after the surgery and that i am not going to ruin my life

(ps i've spent 2 years trying different thyroid meds and diets and functional medicine doctors and supplements so please don't mention that stuff here)

(pps i take, iron, vit d, and b12, all are in optimal ranges)

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Just remember that you are only likely to see negative stories on forums because that's where people go with their problems, all the others who are doing absolutely fine don't need forums, they are busy getting on with life so we just don't hear about it.

It sounds like you don't have a choice regarding surgery, it needs to be done so try to stay positive.

Good luck

hi , thank you for replying! I do have a choice, that's the problem. I don't know what to do. I feel deep down that this is the right choice, but I am also afraid of ruining my life...even though it already sucks anyways.

If you have suspect nodules something has to be done, nobody can predict how surgery will affect you and no matter how many stories you read it's still something only you can decide on.

If you aren't feeling great now then leaving things as they are surely isn't an option.

that's kind of how i see it....not feeling great now anyways and i definitely cannot continue on this way

As I read your posts I began to pray for you, ... and will continue if you wish. So very sorry for your current situation. I've spent most of my adult life caring for my patient's needs but I know that science/medicine cannot provide all of the answers. (Jeremiah 33:3)

thank you so much seriously

As I prepare to lay my head down tonight, I am confident that God does hear your cry for help. He has plans for your future. He has a purpose for your life - His purpose! And, because of the struggles you are dealing with, and the things you are learning, you will be better equipped to live out that purpose. Know this, utg123, you are HIS favorite. FollyDon

FollyDon, this really means so much to me. Thank you so much :)

The LORD is near to the brokenhearted and saves the crushed in spirit.

Psalms 34:18 ESV

Hi I had my thyroid out 4 years ago due to numerous nodules..worst thing I have ever done .if u have a choice ,don’t ! Feel awful all the time ..

did you have graves or hashimotos? are you optimally medicated? what's your TSH? Do you take T3 with your T4? If you're feeling awful all the time there's surely a reason....your quality of life shouldnt be that bad.

Hi tsh is 19.4 range 12/22. Will not text t3 or give t3 meds.... am in range ..had thyroid removed just due to nodules ..they said to many to test.im on 125mg thyroxine ,I did put a post on here the other day .heading am I hyper ? One reply said I’m not over medicated .so going back to my docs on Tuesday and asking for a slight rise..never feel right ..if only I could go back.sadly it seems the norm after the op ..so many ppl feel the same way .

Hi

I had a total thyroidectomy 30/8/17 due to uncontrollable graves and lots of nodules , I also have thyroid eye disease and every time I had a flare up my eyes worsened

I can definitely say it was the best thing in my case

Post op I felt so much better and now after 5 years on the sofa and 35 years of being a complete bitch I can honestly say I am who I was meant to be, the frustration and anguish has gone the eyes are much better, yes I still have double vision but I feel I can be more positive about it, I don’t know if it’s psychological but I do know I feel in control, I’d been over medicated on carb prior to op and know what it’s like to be hypo so now I’m on 125 of Levo thyroxine and I feel good, in control and positive

The op itself wasn’t as traumatic as I envisaged it to be I was in and out in 24 hours had the clips off in 48 and although tired and a bit sore for 2 weeks I felt great! And I still do

So good luck and be strong you’re on the right path

thank you so much for the comforting words and for sharing your story. I am so happy to hear you are doing well.

Have you had a FNA - Fine Needle Aspiration to check nodules ?

they are not large enough (i'm not sure of their exact dimensions though sorry)

You said "possibly cancer " - surely they have to check first before operating.

The needle biopsies aren't reliable as it's a very vascular area. They usually do three and they have a soring system to show 'probability'. My score indicated that the cells extracted showed a 2 in 10 chance of cancer being present.

Surgeon decided to take out the mass anyway as it was a risk. He was very surprised when histology came back with a Grade 2 Follicular cancer. He then proceeded to remove rest of thyroid.

Don't take any chances. It's not an exact science.

Good luck to you.

Wow, I'm so sorry to hear about your diagnosis :( that isn't easy. May I ask, how are you feeling now?

I'm fine now except for the difficulties experienced by many in getting meds right.

The surgery itself wasn't a problem - just 'another' problem as I was being treated for breast cancer at the time (not connected). It wasn't a good year for me :)

Like Bantam says, you mostly hear from people having problems on here.

My sister in law had a TT over 45 years ago when she was found to have thyroid cancer not long after the birth of her second child. She was allowed to carry on breast feed8ng for a year as her lump was thought to be just a cyst. Turned out to be malignant.

Since then she has gained a university degree, taught science, hill walked, rock climbed, sailed round Europe and the Canaries, gone mountain biking, swum competitively, gone camping in all sorts of weathers, travelled the world and become a grandmother. She has done so much in her life, so having a TT definitely did not mean a miserable life for her and hopefully it won’t be for you.

Should add that she is slim as a reed, I’d say a size 8-10.

Welcome to the forum, Utg123.

What thyroid replacement have you tried and how much are you taking now? Can you post recent thyroid results and ranges so we can see whether you are optimally dosed? If you are undermedicated you will gain weight and feel fatigued. If you have results and ranges for ferritin, vitamin D, B12 and folate please post them too.

hi clutter,

I have tried every kind of replacement med (T3/T4+T3/T4), but my numbers are not bad enough to respond well to medication. My TSH before I started taking meds was 3.14, then after two months on the meds, it was 2.96. The FT3 measurements were nearly perfect though...so that remains a mystery...

when I started meds (13 mcg of Tirosint):

TSH 3.14

T4: 7.1 (4.5-12.0)

FT4: 1.2 (0.8-1.8)

FT3: 4.0 (2.3-4.2)

T3U: 33% (22-35%)

After 2 months on meds:

TSH: 2.96

T4: 6.9 (4.5-12.0)

FT4: 1.2 (0.8-1.8)

FT3: 3.9 (2.3-4.2)

T3U: ELEVATED 36% (22-35%)

after taking the meds i decided to stop because i felt very shaky inside all the time (idk how to describe it really). Plus, I had also tried upping the meds to 25 mcg, and my heart rate went over 100 for 2 weeks so I had to stop. I don't have the ranges for the vitamins but my b12 was 400 point over the top of the range, i remember that. My vit d was around 60 with a range of something like 12-90. Iron will be retested again soon but it was in a good spot as well...my GP is very good about monitoring vitamin levels. I just feel so lost with all of this. There is nothing else wrong with me, I have ruled out all other autoimmune diseases/vitamin deficiencies/sleep apnea....I'm just at rock bottom and I feel so hopeless. I feel like I'll never get out of this. I can't even go to school full time... how will I ever get a job and survive on my own? it's all just terrifying. sorry for the mini rant...just really scared.

Utg123,

There are several brands of Levothyroxine, Liothyronine and also NDT.

If you truly tried every brand of each med and couldn't tolerate any one of them then you may want to avoid surgery which will make you dependent on replacement thyroid hormone.

i've just tried tirosint, cytomel, and compounded t3!

utg123,

So you've not tried them all.

If Tirosint Levothyroxine didn't suit you might try Synthroid, Levothroid, Levoxyl or Unithroid.

If Pfizer Cytomel was no good try Perrigo, Mylan or Sigma Pharm Liothyronine (T3).

If you can't tolerate any of the above then try NDT. Brands are listed in stopthethyroidmadness.com/a...

Hi utg123 and Clutter I was going to suggest having results and ranges for ferritin, B12 and folate posted too, with their ranges.

As we know doctors have a habit of saying "normal" when it is not so. B12 deficiency and thyroid problems often go together, and I find when my B12 is low I get miserable.

Hope you feel better soon.

PS Have just read your later post - what about your folate, B12 won't work if your folate is deficient.

Also "Hashimoto's very often affects the gut, leading to low stomach acid," and with low stomach acid B12 in the blood can be high but not getting into the cells.

I know it is a lot to take in when you are so young, but you will get very helpful advice.

my folate is not deficient i just had it checked at my obgyn's office. i actually have very high stomach acid so much so that i can't even take nsaids. i work with a gastroenterologist on this. I've been down the leaky gut trail and it didn't do much for me. I appreciate the thought though...I have just spent 2 years dabbling in functional medicine and i am kind of done with it all i mean i still watch my diet and take my vitamin supplements but that's it.

As you have Hashimoto's you really need to look at food intolerances

Hashimoto's very often affects the gut, leading to low stomach acid, low vitamin levels and leaky gut. About 5% are coeliac, but over 80% of us find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms.

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

Low stomach acid can be an issue

Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL

thyroidpharmacist.com/artic...

Other things to help heal gut lining

Bone broth

thyroidpharmacist.com/artic...

I have a partial thyrodectomy for this Monday coming up the 23rd of Oct. I am scared to do this as well and don't know what to expect afterwards also. I have a 3cm nodule on lower right lobe that came back inconclusive on fna test. My ENT recommended me getting this out and test it. If it came back positive then have to get the other half taken out as well. My insurance would not cover a genetic test and I was wondering if anyone has had this operation and what to expect. Thanks

hi, I had recently Thyroidectomy due to same reason u have, multinodular goiter.had choice of keeping it monitored or geting my thyroids out..I go for thyroidectomy.it occured 6 months before.healing was fine n quick. Initially I was on thyroxin 100mg per day, but was not feeling great.fatigue, weight gain , dryness of skin n.hair etc. but I changed the dr, endocrinologist , she increased my dose to.150mg..Eversince, feeling great. no more fatigue or restlessness.I managed to loss 3 kg weight also .So stay positive.It will take sometime to find out ur actual dosage, but once u will figure out how much is suitable for you, you will be back to ur normal self. I kept goiter for years with me and it only went to worst.at the end I was having pain in my throat , swelling nd shortness of breath.My grandmother died of thyroid cancer, so I did not take the risk n got it removed.Although my biopsy report after my thyroiectomy came out negative, means no cancer, but I am happy I did the right thing at right time

THANK YOU SO MUCH!! Glad you are doing well! :)

I was is the same situation. Felt horrible before TT but numbers were actually more normal than yours. Suspected cancer so TT. I felt so much better after. (with a bunch of Levo then Levo/Cytomel dosage adjustments and now on NDT)

It turns out that I did not have cancer but I'm so glad they took it out because it or its nodules were misbehaving. I was lucky they thought I had cancer because they would have never removed it otherwise.

My surgeon pointed out that it is much easier to control hormone replacement w/o any thyroid tissue left.

So you see...it is not all bad news!

THANK YOU SO MUCH! I love hearing positive stories and yours gives me hope! Glad you are doing well!

You are welcome. I'm pretty sure you won't miss your Hashimoto's afflicted nodule infested gland.

It seems that you have already learned to navigate the minefield of thyroid hormone replacement. (t4 vs t4/t3 vs NDT) And you have this forum. The only thing I had was a fool of an endo, not enough Synthroid, oh, and the internet:) I am confident that if I knew what I know now, it would have been no problem at all.

The surgery itself wasn't too bad. I did look like I'd been attacked by a shark immediately after, but you can barely see the scar now.

Godspeed...

do you mind if i ask, how hard was it to adjust to the meds for you? what were your numbers like before surgery?

I was put on levo only at first. 112mcg and I don't convert well, so I was cold and tired. Endo was a dodo bird but he did add t3. If you look at my first post I have a picture of all the labs and doses I've been on. I think I have excess rt3 if I take very much t4, so I'm trying to minimize t4 consumption. My new endo is okay with NDT but she doesn't want to add any t3 to it. So for now I sneak an additional 10mcg in addition to my 2 grains of NDT, and I feel pretty good.

Numbers before surgery were tsh always around 1. t3 and t4 low normal or normal. But funny you should ask because I am looking at some old results and my ft4 was .7 (.6 - 1.6) and my ft3 was 2.9 (2.0 - 3.5) Hmmmm...I wonder if my nodule was making t3? My GP said that it could have been producing hormones outside the tsh loop...

your story really gives me hope because all endos i have seen are like "your numbers are good!! you're fine!!" and like....that makes me start to doubt myself...like maybe it really isn't my thyroid...maybe they are right. So you really do feel better? Like, you actually have the energy to get through a day? That's my goal.

Yes, I pretty much have enough energy. I sometimes lay down for a few minutes in the afternoon, but then I'm good till late in the evening. (I also had/have Lyme disease, so that is another possible complication)

Before the TT I was freezing cold, exhausted, and my blood sugar was all over the place. My muscles kept tensing up like when you are sitting in the dentist chair. And there was a weird internal shaking at times. The day after surgery it all stopped. My endo said it was in no way related to my thyroid because my levels were 'normal'. My regular GP was the one who pointed out that once a nodule goes rogue, it can make a variety of hormones. Your body will work hard to normalize your serum levels, but who knows what is going on between blood draws.

I don't recall having antibodies tested, but my surgeon said my thyroid looked like a classic Hashimotos thyroid. I think that TT is actually being considered as a treatment for Hashimotos. The thyroid becomes so unpredictable that they feel you are better off without it.

medpagetoday.com/meetingcov...

In any event, only time will tell how you will feel after. But don't doubt yourself on account of what endos or GPs say. They don't have a clue.

WOW I was actually just going to ask about the internal shaking because it's happening to me right now and has been for a month! it drives me insane!! Yes, TT is being considered as a treatment, that's essentially why I sought it out! You are giving me hope :') May I ask, do you work? Has it interfered at all with your work life or can you manage pretty well?

I work from home. My husband and I prepare income taxes for 4 months a year. I don't have to leave home, but I am confident that I could function quite well even if I went to work each day. I actually feel as good as I've ever felt. I do a lot of physical work outdoors and have no trouble with that. I do think there is a little room for improvement, so I am working on my ndt/t3 dose.

As for the internal shaking...no one ever had a suggestion as to what that was. At first I thought maybe a magnesium deficiency. I supplemented for 8 months and no change. Literally it stopped the day of the TT, so it had to be related to the nodules.

Are you scheduled for surgery?

Wow thats so great! I’m so happy for you! And yes I am scheduled for mid December. I’m just trying to come to terms with the decision although I knew it was gonna happen eventually...I just told myself to give it one more year of trying things before I gave up but the years just about over so yeah I’m done

With the cancer possibility thrown in, it's not like you have a choice anyway. In my case I had the option to do a partial thyroidectomy. Somehow hoping to not have to be dependent on pills forever...but my astute surgeon who had no bedside manner at all simply said, 'Well, your going to be taking pills anyway, so get over it.' And then he pointed out that regulating hormone replacement is far easier with no thyroid remaining. He is right. I think you will feel so much better after. It might take a while though because your body is really stressed out currently. You will have to let me know how you make out...

i will! if i dont back out first lol. wow i'm getting some negative replies on here.....this is why im terrified maybe i need to stop asking people

Hi what are your symptoms? Do they match up with thyroid cancer or Hashimotos I didn’t have a choice because the doctor misdiagnosed me as having cancer please if you have a choice think about it wisely as I know if I had a choice again I would stomp on the doctors foot and get a second opinion

yes i have hashimotos and all the symptoms of hypo and hyper and have for many years now so it's not a decision i've come to lightly...i don't really feel like either option is better than the other...live with a gland that's already messing me up and will be unpredictable or live without it and have peace of mind but struggle to get the meds right....neither is appealing but i have to choose

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