Thyroid Removal???

[slayed]

Allright, I have read some posts on this forum and noticed alot of users really educated on thyroid issues...was impressed. So I was hopeing to get some other peoples opinions on this issue I am currently trying to decide on.
A little back ground first.I am a 36 year old white male. I was diagnosed with grave euthyroid in 1996 but the doctor believed by the time my first thyroid test was performed my thyroid had already started to die off,  and was to the point my thyroid TSH numbers were in the normal range. Was told to keep getting my thyroid tested at whatever interval it was and eventually it would come back low thyroid. They were right...seems like within 6 months a hypothyroid condition was shown on test results. So to make a story already getting long shorter...years and years of feeling really good and then back to crap...doctor after doctor I found a doctor, well nurse practioner, that looked beyond TSH levels. I have felt the greatest I have in years...very happy with her. Now the problem is she wants me to get my thyroid removed because my thyroid antibodies are pegging the labs "meters'...they are really high. ATG >3000 and (TPO,ATA) >1000 the range for both these from this lab are 0 to 25, 0 to 35 respectively. Her theory is that my immune system is and has been overworked fighting my thyroid and that is why I seem to get every sickness going around and was tired and fatigued alot. So if I get my thyroid removed my immune system will be able to go back doing just what an immune system is suppose to do...Curoius to hear some of your thoughts on this theory and if anyone knows where I can find out more information on thyroid removal for high antibodied. I know most thyroids are removed for cancer or being enlarged. These where checked and suprisingly my thyroid is not enlarged, in fact it is on the smalll side, and zero signs of cancer. I can't seem to find much on the internet about this so it makes me wonder??? Any help would be appreciated.

[Red_Star]

Just wanted to add i currently take 2000mcg daily of sublingual B12 spray for autoimmune pernicious anaemia.  

Delivery System/Rate of Absorption*

Pill or tablet - 10%
Capsule - 20%
Gel Cap - 30%
Transdermal Patch - 45%
Sublingual Liquid - 50%
Intramuscular Injection - 90%
Intraoral or Sublingual Spray - 95%
Intravenous Injection - 100%

Physicians' Desk Reference, NPPDR No. 18:676, 1997.

[goolarra]

That's okay, you don't have to put anyone in the "to" block.  This part of the forum is open, so anything you post here everyone can see.  

Thyroid can definitely cause those symptoms.  

Definitely a good move to supplement B-12, testosterone and D.  Be sure to get B-12 and D well up into the range, not just barely in range.

Your FT4 is pretty low.  It's 32% of range, and rule of thumb for FT4 is midrange.  So, you have a ways to go there...perhaps the 25 mcg increase will have helped that.  TT3 (yes, next time be sure they do FT3), on the other hand is dismal.  It's at 10% of range, and rule of thumb for T3 is upper half to upper third of range.  It might really improve your symptoms to try adding some T3 to your T4 if FREE T3 is still low next go round.

I agree with you completely...what other profession can screw up so regularly and not even blanch at taking your money AND charge you further to fix what they broke?  On the screwing up regularly...meteorologists, but at least their advice is free!  LOL

It's rare, but not unheard of to have both TSI and TPOab and/or TGab.  Were TPOab and TGab ever tested in the beginning?  With your TSI, I would assume any doctor would say eureka! and probably look no further.  Usually, having both antibodies plays our just about exactly as it has for you.  Graves' usually dominates first, Hashi's moves in to clean up the mess.  Whichever is dominating is the one treated.

If your episodes last 3-4 weeks, I wonder if it would be worthwhile to test (blood work definitely, but maybe uptake, too?) during one to see exactly what's going on.  Your T3 is low enough that you could actually be being pushed into hypo during those times.  I know your symptoms feel hyper, but lots of symptoms cross over, and some people experience the same symptoms whenever the thyroid is "off" in either direction.

Even before that, though, I think it would be worthwhile to try to raise your FT4 level (may already have been accomplished) and definitely do something about your T3 level.  T3 (FT3 anyway) correlates best with symptoms, so you are still right on the brink of being hypo.  I'd just hate to see you go through the pain, suffering, anxiety and expense of a TT only to find that your levels just needed to be higher.

[slayed]

had to repost because again didn't put anyone in the too block...

I have felt years after the beginning and even recently "hyper" symptoms. That is what ***** about this...there are other things that can cause it but I can never truly rule out the thyroid  gland. I am normally a calm, mellow, down to earth guy, nothing much bothered by, generally ok with life and then there have been times where that is not the case. For no known reason to me...I can feel my heart move faster, body more shaky, emotional, anxiety sometimes with panic attacks, weight loss, ect. To me its like an emotion amplifier and it leaves me to not trust my own emotions. At first this was very difficult because I thought I was going crazy but now I have kind of learned to control it and live through it. These "episodes" usually last 3 to 4 weeks and probably average once every year and a half. Doctors say this has nothing to do with my thyroid so I have treated it as such but it still makes me wonder. Well I guess that is enough look into my "craziness".

Funny you should mention vitamin D and B12...I now, along with my testosterone injection, get B12 injections and take vit D pills. I am due for a follow up blood work for the raise in synthroid from 175 to 200mcg and to see the effects of the injections. My latest labs from two months ago when I first started to see this doc are shown below. So I was on 175mcg synthroid...ranges shown in parenthesis

TSH                1.04   (0.30 - 3.00)
FREE T4         1.15  (0.80 - 1.90)
TOTAL T3       87     (76 - 181) hhmm didn't notice no free t3

Vitamin B12    338   (174 - 878)
testosterone    207   (300 - 950)
Thyroglobulin  <0.2  (0.5  - 55.0)

Those are the ones in addition to TPO,ATA and ATG listed above. My cholesterol was high and was a big part of the reason for switching doctors. The previous doctor went with the standard, "Your TSH is within range so any other ailment(s) is NOT your thyroid". Doesn't take a genius to see, based on my total t3, that hey maybe my thyroid DOES play a part in this. FT4 on the low end as well.  I will concede that maybe the B12 and low testosterone plays a huge role in it as well.

Side note: Makes me wish I could be a doctors auto mechanic...well I understand your car is still pulling to the right but I did change the motor in it...don't really understand why that didn't fix it. If you would just finish paying the $12,000 bill for the motor and bring it back in I am sure I can get your car driving straight. I mean really what other industry do you really have still pay if you get "NOTHING"...

I have had many ultra sounds and they all show no nodules and what is said as a small thyroid...last one  was right lobe 42x14x9, left lobe 32x11x4. thyroid gland "diffusely heterogeneous in echogenicity and echotexture". I guess at least that is good.

I remember getting one RAIU in the beginning when it was believed my thyroid would become hyperactive. But then it became hypoactive and haven't heard a thing on that. I never really got a good explanation or found anything myself to explain the graves antibodies in the beginning and then a switch to hoshimoto antibodies later on. I should research that more but what I remember is mine was "very unusual".

[slayed]

I have felt years after the beginning and even recently "hyper" symptoms. That is what ***** about this...there are other things that can cause it but I can never truly rule out the thyroid  gland. I am normally a calm, mellow, down to earth guy, nothing much bothered by, generally ok with life and then there have been times where that is not the case. For no known reason to me...I can feel my heart move faster, body more shaky, emotional, anxiety sometimes with panic attacks, weight loss, ect. To me its like an emotion amplifier and it leaves me to not trust my own emotions. At first this was very difficult because I thought I was going crazy but now I have kind of learned to control it and live through it. These "episodes" usually last 3 to 4 weeks and probably average once every year and a half. Doctors say this has nothing to do with my thyroid so I have treated it as such but it still makes me wonder. Well I guess that is enough look into my "craziness".

Funny you should mention vitamin D and B12...I now, along with my testosterone injection, get B12 injections and take vit D pills. I am due for a follow up blood work for the raise in synthroid from 175 to 200mcg and to see the effects of the injections. My latest labs from two months ago when I first started to see this doc are shown below. So I was on 175mcg synthroid...ranges shown in parenthesis

TSH                1.04   (0.30 - 3.00)
FREE T4         1.15  (0.80 - 1.90)
TOTAL T3       87     (76 - 181) hhmm didn't notice no free t3

Vitamin B12    338   (174 - 878)
testosterone    207   (300 - 950)
Thyroglobulin  <0.2  (0.5  - 55.0)

Those are the ones in addition to TPO,ATA and ATG listed above. My cholesterol was high and was a big part of the reason for switching doctors. The previous doctor went with the standard, "Your TSH is within range so any other ailment(s) is NOT your thyroid". Doesn't take a genius to see, based on my total t3, that hey maybe my thyroid DOES play a part in this. FT4 on the low end as well.  I will concede that maybe the B12 and low testosterone plays a huge role in it as well.

Side note: Makes me wish I could be a doctors auto mechanic...well I understand your car is still pulling to the right but I did change the motor in it...don't really understand why that didn't fix it. If you would just finish paying the $12,000 bill for the motor and bring it back in I am sure I can get your car driving straight. I mean really what other industry do you really have still pay if you get "NOTHING"...

I have had many ultra sounds and they all show no nodules and what is said as a small thyroid...last one  was right lobe 42x14x9, left lobe 32x11x4. thyroid gland "diffusely heterogeneous in echogenicity and echotexture". I guess at least that is good.

I remember getting one RAIU in the beginning when it was believed my thyroid would become hyperactive. But then it became hypoactive and haven't heard a thing on that. I never really got a good explanation or found anything myself to explain the graves antibodies in the beginning and then a switch to hoshimoto antibodies later on. I should research that more but what I remember is mine was "very unusual".

[goolarra]

I should also have asked you what your FT3 and FT4 look like now.  One thing that jumped out at me in your last post was the amount of T4 you're taking (200 mcg).  Fatigue can also have a lot to do with low FT3 levels.  Perhaps what you really need is some T3 meds thrown in???

Also, have you taken a look at your vitamin D and B-12 levels?  

[goolarra]

Agreed...they're advisers, nothing more.

Ooh, quite the TSI count.  That might be the highest one I've ever seen!

"Isn't it possible at times my thyroid might kick out some hormones and coupled with my medicine create a hyper state..."?  That's actually quite common, but it's usually in the early stages of the disease.  As more and more of the thyroid is killed off over the years, it becomes less able to create those little spurts.  Have you felt like this was the case recently?

You're right that this is a relatively low risk surgery, but any surgery is to be avoided if possible.  One of the major risks with thyroid surgery is parathyroid damage.  

Many of us have considered thyroid target practice.  LOL

I guess I'd have to wonder after 16-17 years of hypo (Hashi's), preceded by (how many?) years of hyper (Graves') how much your thyroid could possibly be contributing to the equation at this point in time.  Have you considered an ultrasound and/or RAIU to determine its functionality?    

[slayed]

Thank you for all the info...it has helped me realize that thyroid removal, antibodies droping, immune system not being overworked, feeling improvements, is not really a reallistic expectation. Still considering getting it done...I know maybe not the smartest thing but see post above. I read through some of the thyroid removal link you posted and it seems to me the worst thing about thyroid removal is if your thyroid was working before removal. Going through the hypo state and getting meds right...I have already went through this and I guess to a certain point still am. Based on your replies and goolarra I am going to find someone for a second oppinion and see what comes of it.

[slayed]

Not sure how it would affect the relationship and that is somewhat of a concern but I like to take the advice from a doctor just as that...advice. With most diagnosis/treatments I like to do some research and understand where the doctor is coming from...it helps to know doctor is doing the right thing. I am considering having it removed more for due to the fact I have over the years just wanded it removed. Back in 1997 my eyes where protruding from my head...classic graves opthalmopathy. My labs at this time showed thyroid stimulating immunoglobin was 1198 with 130 being the high. TSH receptor anibodies at 22 with high being 10. My TSH, T3, T4 where within "range". So at this time nothing was done but to continue testing waiting for what the doctors thought would be a hyperthyroid. Eventually a hypothyroid condition followed. My take on this based on how I felt for years before this is that my hyperthyroid state had already ran it course.I strongly beleive for years prior to 97 I was hyperthyroid...heart palpitations, really skinny and unable to gain weight, excess energy, the works. In 97 we were just at the point were my thyroid was begining to  burning out. Once thyroid medicine was started I have lived what appears to be the typical low thyroid life...you get a taste of what it feels like to feel really good and then...bam back to feeling like crap. Doctors telling you that your TSH levels are within range and anything you are feeling or going through is something else. Maybe they are right but the thought of it possibly being thryroid related, at least in my mind, can't be ruled out. Expecially where my case seems non typical and unusual. Isn't it possible at times my thyroid might kick out some hormones and coupled with my medicine create a hyper state...at times I definetly felt that to be the case. So in short if my thyroid is being treated as "dead'...200mg synthroid then what is the point in keeping it. Seems like in the beginnng the doctors where hopefull that my autoimmune condition would run it course and eventually everything would start working again...this is obviously not going to happen so what is the point of keeping the damn thing. I could even try to get my thyroid in a glass jar and take it out and shoot it...lol. I have looked at the risks of surgery and really it appears to be relatively safe. To me the discomfort from the surgery would be a small price to pay to knock the thyroid out of the equation.

[Red_Star]

So you feel great and your doctor wants you to remove your entire thyroid? I will add this to the strange things doctors say file. :)

Living without a thyroid gland:
http://www.medhelp.org/posts/Thyroid-Disorders/Living-without-a-Thyroid-Gland/show/324227

[goolarra]

No, in several years and after reading several thousand questions on this forum, I have never heard of anyone recommending thyroid removal based on antibody load alone.  I don't know why your doctor is so insistent...as far as I know this is not in any way standard of care for Hashi's.    

If the thyroid gets large enough (goiter) to make breathing and/or swallowing difficult, removal is sometimes indicated.  

If it's impossible to stabilize thyroid hormones on meds, sometimes it's removed so that the thyroid will no longer be producing random amounts of thyroid hormone.  In initial stages, Hashi's can be characterized by swings from hypo to hyper as thyroid tissue dies and "dumps" hormone into the bloodstream.

I'd certainly want to get a second opinion on this before going forward.  

There is no guarantee that removal will lower antibodies (at least for what can be a protracted period of time).

It seems you like this doctor otherwise.  Is it possible to just say no to the TT, or will that compromise your whole relationship?

[slayed]

Thanks for the quick response...some good information but I am still confused. Based on the feedback so far removing the thyroid would have no benifit heathwise. So why would my doc be so insistant on having it removed???  Has anyone ever heard of the sole reason to remove a thyroid being high antibody levels???  Makes me wonder because otherwise I am extremely happy with the care...all previous docs looked solely at TSH and if anything was wrong it was something else. My dose of synthroid was raised and I have never felt better. Further helping this was a testosterone test that showed my levels extremely low and testosterone injuctions so that could explain feeling better as well.

[goolarra]

Removal of the thyroid for Hashi's is seldom indicated, unless there are extenuating circumstances, i.e. the thyroid is inflamed enough to impinge on breathing and/or swallowing.

My TGab was 3,000+ and my TPOab 900+.  I'm very rarely sick.

"Her theory is that my immune system is and has been overworked fighting my thyroid and that is why I seem to get every sickness going around and was tired and fatigued alot. So if I get my thyroid removed my immune system will be able to go back doing just what an immune system is suppose to do..."  It's a lot more likely that the fatigue and getting sick easily had a lot more to do with being treated by TSH only.  I'd certainly give it some to to see if some of these issues resolve now that you're truly euthyroid.  Some things just don't need to be "fixed".

Your thyroid could be small because it is, in effect, "dead" and atrophying.  

[Red_Star]

Excerpt from "The most important thing you may not know about hypothyroidism" by Chris Kresser:

"What the vast majority of hypothyroidism patients need to understand is that they don’t have a problem with their thyroid, they have a problem with their immune system attacking the thyroid. This is crucial to understand, because when the immune system is out of control, it’s not only the thyroid that will be affected.

Hashimoto’s often manifests as a “polyendocrine autoimmune pattern”. This means that in addition to having antibodies to thyroid tissue, it’s not uncommon for Hashimoto’s patients to have antibodies to other tissues or enzymes as well. The most common are transglutaminase (Celiac disease), the cerebellum (neurological disorders), intrinsic factor (pernicious anemia), glutamic acid decarboxylase (anxiety/panic attacks and late onset type 1 diabetes)."

I have Hashimoto's thyroiditis and autoimmune pernicious anaemia. Taking out my thyroid gland won't improve my immune system; it still hates me. :)

High TPO but no thyroid:
http://www.medhelp.org/posts/Thyroid-Disorders/high-tpo-antibodies-but-no-thyroid/show/1456142

Antibodies:
http://www.medhelp.org/posts/Thyroid-Disorders/Antibodies/show/1779565