# TPO chronically ranges from 1,000 to upper 5 figures. Would a thyroidectomy help?



## Hopeful (Apr 10, 2018)

Hi! I'm new here, and I'm Hopeful!  I am hopeful that I someday I will get my Hashimoto's under control and my TPO will drop significantly. Thyroid-wise, I feel quite good. My current main hypo symptoms are constipation and diarhea. I take T4 and T3. My FT4 is over mid range. My FT3 is up at the beginning of the upper quarter of range. My last TSH was 0.09. I have no hyper symptoms.

My TPO was around 1200 when I was diagnosed. The highest it's been was upper 5 figures. This happened in the beginning because the doctor I had told me to wait and see if I needed medication. Well, that's what happened, plus my TSH was close to 10, and FT4 and FT3 were close to the bottom of range. Because my TPO is so high and my body is being compromised and attacked, my immune system is very sensitive to everything it encounters. I get sick very frequently. UTI's, cold, flu's, and environmental antigens, whereas I rarely got sick with those illnesses before my TPO got to be so high. I am so tired of being sick all of the time, over and over, all year long. This has been going on for the last 4-5 years.

I've had thyroid ultrasounds, and a benign FNA. My thyroid is enlarged and I have some hypoechoeic nodules. I have a barely detectable goiter that even if I told you that I have one, it really can't be seen. My thyroid has enlarged a little since my first ultrasound and so have my nodules. I just recently got a current ultrasound because about a month ago I started feeling a tightening sensation in my thyroid and a feeling of taking in less air and then after that I found out how high my TPO had climbed. I also have either some new smaller nodules growing, or enlarged lymph nodes. This was noted on the radiology report. I just found this all out today. Tomorrow I am going to start researching ENT's. I need to research the one that I previously saw, to see what his knowledge is about Hashimoto's.

So my main question is, if after years of having unbelievably high TPO, have been sick with all sorts of illnesses for years due to immune system problems, does there ever come a time when you should just go ahead and get a thyroidectomy?

Thank you in advance for your response.


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## joplin1975 (Jul 21, 2011)

Yes, absolutely.

Once you remove the target of the autoimmune attack, the antibodies simmer down and you'll feel better.

That all said, be prepared for a rough period of months after surgery. Sometimes the process of regulating your medication can take a long, long time.


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## Hopeful (Apr 10, 2018)

Hi. Thanks! That is so good to hear! Cute QH, or is that a Paint? I need to find a good ENT to interpret my latest ultrasound results. Considering how this has been going for me, I'm really starting to think that removing my thyroid might be the best answer. I can't imagine this is suddenly going to get any better and that I can put my antibodies into remission. Is an ENT the type of doctor that would remove my thyroid? Am I going to have a hard time convincing a surgeon that I'd be better off without my thyroid?

I've been taking T3 and T4 since first being put on meds. I'm committed to taking it for life even if I keep my thyroid. If my life improved without it, I'd give it away tomorrow if I could!

Questions, questions, questions! ;-) Can you tell me more about how things might go for those first months after surgery? Would I still take T3 and T4? Do they make you come off medication for awhile, or do you keep taking it? How is the dose determined?

How did you find the surgeon you chose to remove your thyroid?


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## joplin1975 (Jul 21, 2011)

Thank you! She's a QH. A typical chestnut mare ????

There's not one "right" type of surgeon to remove your thyroid. Lots and lots of people have good luck with ENTs. Believe it or not, I had a fantastic experience with a general surgeon. The important thing is to make sure they have lots and lots of experience. The more experience, the more likely you'll have a good outcome.

Thyroid surgery is pretty common. Ask around - you might be surprised.

Things to avoid: surgeons without lots of experience - you want someone who does 5-7 surgeries per week; someone who uses staples to close the incision; and someone who has a high complication rate (parathyroid damage and vocal chord damage). You can ask the surgeon for their complication rate.

After surgery, your body just goes through a complete hormonal upheaval. They should start you right up on meds and your starting dose should be determined by weight. You have a bit of a head start, being that you've been on thyroid meds and kinda know how to judge your symptoms. But there is a difference and it does take some time to get used to things.


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## Lovlkn (Dec 20, 2009)

I used a general surgeon as well - she was an endocrain specialist. I would think all large surgical groups have at least 1 surgeon specializing in endicrain. I was referred by a friend who worked in operating rooms.

Make sure whoever you decide on does at least 4-5 thyroid surgeries weekly. Experience counts here.

You could take a copy of your records to a surgeon and they probably would agree to remove


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## Hopeful (Apr 10, 2018)

@joplin1975, My favorite! I have 3. 

Thanks for the info. I wonder how common it is to get a TT if you don't have cancer? More common in Graves Disease, I believe, but what about Hashimoto's? Are ENT's who do thyroidectomies knowledgeable enough about Hashimoto's and high antibodies to be able to advise me on getting a TT, or not? So far I have not found one doctor who specializes in Hashimoto's or at least understands autoimmune diseases. There have been one or two who claimed they did, but then they proved that they didn't by treatment or lack of treatment. I feel that I have a pretty good grasp as to the cause and effect of what's going on in my body, yet doctors don't seem concerned about re-occurring infections and constant illnesses in relationship to my fluctuating TPO. Meanwhile, my thyroid hormones are stable, thankfully.

The dosage of medication that I'm on is pretty close to where it would be by weight. After a TT, do most people continue on the same type of meds? Like, if they were on just T4 prior to TT, are they on just T4 after? What about those on T3 and T4 prior to a TT?

Thank you again for the info and excellent advice!


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## Hopeful (Apr 10, 2018)

@Lovlkn,

Thank you for your advice. It was just yesterday that I was wondering if this was at all and option for someone like me. If it ends up being a good and recommended option, I am both excited and a bit scared. I emailed my primary physician earlier today expressing my interest in TT because I really don't think things are ever going to get better in terms of TPO and my immune system. The hypo part took awhile to work out and stabilize and that part of me is pretty content. It's the autoimmune attack and messed up immune system that's the problem.

Who long is the recovery from the physical surgery itself? Immediately after surgery, how much did your FT3 and FT4 levels change? How long did it take for them to return to your previous level? Can you describe what the bad period following surgery was like for you and how long did that last? Have either of you had any complications, on going new symptoms, or return of old symptoms after TT? Do either of you have any regrets?

Thank you again for your excellent advice!


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## Lovlkn (Dec 20, 2009)

I have absolutely NO Regrets having my thyroid removed.

I had both Hashi's and Graves and adjusted med's almost monthly for 4.5 years. I was told not to remove my thyroid by a massage therapist I trusted and saw regularly so held onto it way way too long. I feel much better without a thyroid and my labs are stable - been on same replacement dose since 2009.

Having high TPO does put you at risk for developing cancer - something I did not know prior to my TT. My endo never did an ultrasound - the surgeon said my thyroid was absolutely destroyed upon removal.

For me - it was a good choice as the doctors kept my hypo and prior to medication I was extremely hyper.


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## joplin1975 (Jul 21, 2011)

Ha! I have three as well. Two retired dudes hanging out in the field and this little sassy critter. 

Thyroid removal for people without cancer is common is symptoms can't be controlled or you aren't able to stabilize on meds. It depends on your doctor -- some need convincing and some are more than willing to help. A good surgeon should be able to answer your questions -- whether they are an ENT, and endocrine surgeon or a general surgeon.

I thought surgery was really easy. I had virtually no pain. My surgeon made me take two weeks off of work, but I could have easily gone back in three or four days (I have a non-physical desk job). They don't want you lifting anything heavier than 5-10 pounds for two weeks while your neck muscles heal and you will probably have a stuff neck for a bit, but it was an easy recovery.

It's fairly reasonable to assume you will have the same or about the same level of meds after surgery. I doubt your thyroid is really working now so its not like you will have a significant change. I had Hashi's, cancer, and antibodies related to Grave's before surgery AND I was not on thyroid meds before surgery. I was off all meds for about six week while finishing up treatment for the cancer part, so my numbers were all outta whack. And then I was severely under medicated. It took 18 months for things to regulate. I don't think there's any reason for you to think that you will experience those kind of issues.


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## Hopeful (Apr 10, 2018)

I saw the ENT yesterday. He was great! I was able to have a complex conversation about the thyroid, my levels, and my results of lab work that indicates other oddities. I didn't even lose him!  It was a real, two way conversation! He is also perplexed about my thyroid, autoimmune problems and immune system problems. He said he/we need to do more research to find out if removing my thyroid really is the answer. He is going to check with a highly respected rheumatologist friend of his to see if she will see me. She is currently not taking any new patients, but he is hopeful that he can convince her to accept me. He said that if she gives the go ahead as thyroid removal as being the answer for me, then he'd be happy to remove it. He said he removed his partner's thyroid too.

He does not, however do as many surgeries per year as what you all recommended. There is a teaching school where there is a thyroid department. I'm sure they do surgeries too and I'm sure they do more than the ENT that I just saw. However, this is a teaching/learning school. These are baby doctors with their training wheels still on. I've already been there for other things over the years and they missed too many things, got the diagnosis wrong, or didn't do the right tests. I suppose a person could try to see the main surgeon in charge, it they actually see patients and not just supervise the training wheel doctors.

The ENT also recommended that I see an allergy/immunologist. Unfortunately, she is not seeing new patients and is limiting her immunology patients to only one per day. That doctor's office recommended another allergist/immunologist. I called them and they need my doctor to send over chart notes for review, so they can determine if they want to see me or not.


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## joplin1975 (Jul 21, 2011)

Baby doctors who are supervised (very directly) by highly trained thyroid surgeons = ok. Baby docs supervised by surgeons without a lot of experience = not good!


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