# Decision about TT for hashimoto's...really scared



## utg123 (Feb 2, 2017)

Hi everyone, I have hashimoto's and may be getting a thyroidectomy, so I am curious, do any of you feel better after having yours removed? I'm trying to stay away from all the negative posts on the internet because they absolutely TERRIFY me. My doctor has given me the option of having a TT for my hashimoto's because I have several nodules and have also had a goiter (though I do not have one at the moment).

I know this is a huge decision that should not be taken lightly. I have spent the entire year researching it and trying out both thyroid medications (t3 and t4) and alternative methods to no avail (iodine, supplements, paleo, candida cleanses, cortisol testing, chiropractors, low carb, high carb, mindfulness, etc). My numbers are always in the normal range but I am barely functioning. I went from being a full time college student with a job to losing my gallbladder and barely being able to take one class. The fatigue is insurmountable. I have ruled out all other potential causes of fatigue (autoimmune diseases, sleep apnea, depression, etc). I'm in my early 20s and I feel like my life is just passing me by. I have been out of school since 2015 and all I want to do is go back. I don't see that being possible or anything changing in the foreseeable future unless I do this.

I know a thyroidectomy won't "fix" everything, and that it can be a long road to recovery and finding a new normal, but I am okay with that. At least, by getting a thyroidectomy, I am doing something to treat this and there's no more worrying about monitoring the nodules for the rest of my life and the possibility of cancer. Also, it's a dying organ that is messing with my immune system, why should I keep it? My mom and all the women on her side of the family have hashimoto's and it has ruined their lives. They can't work and their quality of life is miserable. I feel like this is a chance for my life to be different. I also know that things could get worse....and that TERRIFIES me...so, I don't know what to do. I guess I'm just worried that I'll have it taken out and I will regret it because it was still "functioning normally." I also had an endo try to scare me out of it by saying I'll "never be the same" and that was also terrifying. I scheduled the surgery for December and was really confident about the decision to have surgery until I started reading all the negative posts on the internet.


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## creepingdeath (Apr 6, 2014)

I had horrible symptoms with Hashimoto's.
I am stable on Armour thyroid and have no known nodules yet.
A few minor manageable symptoms.
If I tried all avenues with the thyroid hormone and no relief of symptoms I would have had no choice but to have my thyroid removed.
I would have to have taken a chance.
I was fading fast on synthetic's .

I have read both good and bad stories about removal.
Some get worse symptoms and some are cured.
It's like anything in Life. You have to chance it.
The surgery part I don't think is all that big of a deal.
It's how you react to the change to a foreign hormone.

Whatever you decide I wish you luck.......


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## joplin1975 (Jul 21, 2011)

I feel fantastic. Wonderful. Like me again. It was categorically, unequivocally the best decision I ever made.

I was terrified of surgery and was pleasantly surprised at how easy it was.

I had about 18 months of struggles post-op, getting regulated on my meds. I wish I was a bit more assertive about things, but overall, things worked out.

Make sure your surgeon has tons and tons of experience and whoever is regulating your meds after surgery is willing to test tsh, free t3, and free t4. If you've got that, you'll be fine!


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## Lovlkn (Dec 20, 2009)

I was Petrified to remove mine as well - I have Graves that was difficult to control on anti thyroid Meds.

Best decision I ever made! Stabilizing on thyroid hormone replacement is easier without a thyroid.

You say your labs are " in range" however based on how you feel I would bet they are low range.

Having your Free T- 4 and Free T -3 closer to 3/4 of range will help you feel your best.

Find a surgeon who performs at least 4-5 thyroid surgeries a week. That can be a general surgeon or an ENT


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## utg123 (Feb 2, 2017)

joplin1975/Lovlkn

That is wonderful to hear. I met my surgeon this week and I definitely trust him. I'm not worried about the surgery at all.....I'm just very worried about life afterwards...like...what if I take out this organ and ruin my life? What if it wasn't actually a problem? I mean, I know it IS a problem since I have nodules and a small amount of antibodies (60 or 70 was the highest reading I've ever had..now they hover in the 20/30 range)...but what if it becomes MORE of a problem when it is removed than it was when I had it in? Does that make sense? I'm afraid that since I'm not TRULY hypo now, I am really going to be miserable when I am. I have tried thyroid meds before (Spent this year trying all kinds of different ones) and they never gave me any relief...in fact, I felt worse....THAT is what scares me and is the main reason I am doubting myself...but I think the reason they made me feel worse is because the numbers aren't really bad enough to treat yet so the meds just made my own thyroid lazy...you know what I mean? I have a very good PCP who draws all thyroid labs (TSH, T4, FT3, FT4, TPOAb, & T3 Uptake), so I am not worried about that either. I always get my labs done at 7:45 AM and

*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%)

I stopped taking medicine because I felt shaky inside like I was internally trembling and it was awful...but as you can see, my numbers really didn't change much and the FT3 especially was really good to begin with? So I'm worried I am going to mess that up by getting surgery... and I didn't feel better at all on meds...which makes me think I didn't need the meds in the first place and upping them was not an option since I felt that bad (plus I tried upping them to 25 mcg in the past and my heart rate went over 100 at rest every day so thats a bad sign too). God the whole thing just terrifies me...I am so scared...but my life is already awful as it is so it's like I don't know which is more terrifying...staying the same...or having the surgery. Also my suregon was like...this isn't going to help your fatigue you're going to feel exactly the same you just have a bad immune system this isn't going to fix that i was like wow...thanks for that, jerk..if he wasn't a good surgeon i would have walked out.

ps thanks for the well wishes creepingdeath !

PPS...if any of you all are female, how has it affected your monthly cycles? mine are unbearable right now (don't have pcos, have been checked)..and I am hoping they will improve

PPPS joplin1975, did you ever try meds before surgery? did they make you feel bad like they did to me?


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## Lovlkn (Dec 20, 2009)

What are your TPO levels?

Ever had TSI antibodies or thyroglobulin antibodies drawn?

Ever had an ultrasound of your thyroid? You mention nodules. How large were they?

What sort of doctor is running your labs?

I ask because while your TSH is elevated, your FT- 3 is actually in a good spot and your FT-4 is 1/2 range prior to taking any Meds.

Low Ferritin ( you mention heavy monthly cycles) can cause fatigue

Low D and B-12 as well.

I'm not convinced your all your fatigue is from your thyroid as your FT-3 is in good range and your FT-4 at 1/2 range.

13mcg is a really low dose and obviously did not raise your FT- 4. If it were me - I would go to 25 mcg tirosint and see if your FT-4 rises.


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## utg123 (Feb 2, 2017)

lovlkn

I already mentioned my antibody levels; the highest they've gone is near 70 and they hover in the 20's right now (TPO), 25 for TgAB. Never had TSI or TSHrAb. I have had loads of ultrasounds and have many nodules, none large enough to biopsy. I take vitamin D, Iron, B12 and a multi every day. B12 Is above range, D is almost too high, and ferritin is in the top half of the range after supplementing for months. I have definitely exhausted all those options. I have an endo and a PCP but my PCP runs my labs usually as he is more willing to draw ALL my numbers not just the bare minimum...he also keeps track of all my vitamin levels and makes sure they are in the top half of the range. Can't handle 25 mcg of Tirosint, I already tired it and it put my heart rate over 100 for a long time so I had to stop. So, again, not really sure what else I can do at this point.


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## joplin1975 (Jul 21, 2011)

Yes, I tried meds for about a week before I had my thyroid out. It was a disaster. I was shaking and sweating and couldn't sleep or concentrate.

I had cancer, Hashi's and antibodies related to Grave's all happening at the same time. I think my body just couldn't tolerate one more variable. I stopped the meds and started with a clean slate after surgery.

My cycles have become more regular, but also more heavy. That said, I'm 42 and I know things are shifting, in terms of hormones. I also got off birth control, and that's definitely impacted my cycles, too. So its hard to tell you how the TT has effected me as there are so many other variables in the mix.


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## jenny v (May 6, 2012)

When is the last time you did labs? You posted results above but it's hard to tell what point in time those are from.

I feel much better since I had my thyroid removed, but like you said, it's a big decision and you can't put it back in once it's out, lol! I tried like hell to keep mine for almost 10 years but it finally got to the point where it was constricting my esophagus and I was just tired of fighting it. I didn't have cancer but I had Graves and Hashi's and my thyroid was just a mass of scar tissue towards the end.

But, it did take me almost 2 years to feel like myself again after surgery. I had trouble converting and had to switch to NDT, then NDT and T3 due to cortisol issues. Have you ever had your cortisol tested? That can be a huge contributor to fatigue and adrenal problems are not uncommon in people with thyroid problems.


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## utg123 (Feb 2, 2017)

labs are from july 20th and september 20th! my only concern is my ft3 has always been good so maybe i'm wrong about it being my thyroid despite there being nothing else wrong with me idk its just a huge decision and i'm really struggling with it ...i mean, on the one hand, I have hashis and nodules and they aren't going away, so it's not like i'll ever get that pefrect functioning gland again, but on the other hand i could also just feel worse and that's really scary


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## jenny v (May 6, 2012)

You can always postpone surgery, there's no harm in doing that. I would ask for a Reverse T3 test and TSI or Trab--that way you have a complete thyroid panel and can see if there is anything else going on. If those look okay, I would do a 4 point saliva cortisol test to see if adrenals are good or if that might be the cause of your fatigue.


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## Lovlkn (Dec 20, 2009)

> I already mentioned my antibody levels; the highest they've gone is near 70 and they hover in the 20's right now (TPO), 25 for TgAB. Never had TSI or TSHrAb. I have had loads of ultrasounds and have many nodules, none large enough to biopsy.


utg123, you may have mentioned your TPO but not in this thread.

Having alot of nodules, even small ones can create havoc on a thyroid gland


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## utg123 (Feb 2, 2017)

Lovlkn,
my bad, sorry about that! In the midst of my terror over this decision, i've forgotten a few things lol. Can nodules really be that bad? Every doctor i see says they're normal and fine. Ugh, I just wish I knew what to do with 100% confidence, but I don't think I ever will


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## creepingdeath (Apr 6, 2014)

Having thyroid nodules is not normal.
They may be fine if not cancerous or so large they block your breathing or swallowing.
Many people live their whole lives with thyroid nodules and don't even know it.
But if you have symptoms that interfere with your life that are not relieved by replacement hormone you will have to make that decision.
The symptoms will just gradually get worse and worse if the problem is not addressed.

The benefit must outweigh the risks for surgery...........


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## utg123 (Feb 2, 2017)

creepingdeath,

I feel, in most ways, the benefits DO outweigh the risks

Benefits:


never have to worry about cancer again
no more swelling/choking
still on thyroxine regardless
CHANCE OF FEELING BETTER

Risks:


FEELING WORSE

and that's about it!

Regardless, 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.


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## Lovlkn (Dec 20, 2009)

I had the fear of feeling worse - bad enough to postone for 4 years.

In recovery I felt great - now it might have been the pain med's but there was this calm that washed over me. I finally could move on and focus on something I could control - my replacement medications. Now I try to hep people with similar concerns and you are not alone -

Just be sure your surgeon does 4-5 a week - you want someone really experienced. Many doctors use the newest minimally invasive technique, although there are still alot who do not.


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## creepingdeath (Apr 6, 2014)

You would chance it if your symptoms were like mine were.
I hope to hell you don't wait too long and feel the way I did.
I don't want to scare you but I was very close to jumping off a bridge if I did not get some sort of relief.
Hey, I still have my thyroid and if it ever goes haywire again I would not think twice having it removed.
I would never want to feel that way again.


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## utg123 (Feb 2, 2017)

creepingdeath....i am at that point....


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## utg123 (Feb 2, 2017)

lovlkn, wow, that's a long time! I told myself I'd give it one more year to get better with meds/diets/supplements and well...that time is just about up. That's how I feel...like I will finally have something to focus on other than this. Thanks so much for the kind words.


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