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215461 tn?1331866365
Thyroid coming out June 27
I met with the surgeon.  I went over every symptom I have had.  He said I can very well have a pituitary problem, but my endo needs to deal with that, as it is not what he specializes in.  The doctor was nice.  It's a teaching hospital so I also had to deal with students.  He said that even though I might have a pituitary problem, most of my tests and symptoms are completely consistent with hashimoto's.  I am positive for 2 types of antibodies (that was new information).  He said that the thyroid has to come out, even if I have other problems.  My thyroid is causing too many issues and he said it felt all rubbery.  He actually made all the med students come in and feel my thyroid as it is apparently the "perfect" text book hashimoto's thyroid.  You can even feel the edges of mine. YAY, at least my thyroid is good for something lol.  I said I'm glad it can be of use to someone and they said, "hey we will get to see it when it comes out too" lol.  He said that radiation would not have been a good choice for me.  My hashimotos is so bad that different parts of the thyroid uptake the iodine at different rates.  He said this would have been really bad for me, and surgery is definitely the best option.  He can just remove it, and I will finally have a steady dose of thyroid hormones.  He also said that I should not be too expectant that this will cure everything.  He said it plays havoc on the nervous system, and sometimes it doesn't get entirely better.  He is going to examine the parathyroids while he is in there, but he really wants me to try and raise the vitamin D before surgery.  They had an opening June 1 for surgery, but I really wanted some time to take this in.  My surgery is schedule for June 27.  A few weeks before that I have a pre-op appointment and a few weeks after surgery my post-op appointment.  He said since I have an autoimmune disease, getting rid of the thyroid doesn't always help the autoimmune problem.  UGH.  I'm kind of scared that it won't make me feel better after what he said, but I do know it will give me a constant flow of hormone rather than too much or too little.  SO, that is the news.  The thyroid is going bye bye.  I don't know how to feel about it yet. At least I have some time to think. I hope this is the right decision!
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215461 tn?1331866365
I was on levothyroxine before without a problem (before the hashitoxicosis).  I was on this for several years.  I might choose something with less fillers though as I have become intolerant to everything. I just don't know how much they plan to start me out on or how soon after the operation.  Those are excellent questions to ask.
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215461 tn?1331866365
Do all tanning beds work to produce vitamin D?  I wasn't sure about this.  I had thought about tanning, but I didn't think you could get a lot of D from most of the tanning beds.
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I do not tan, it is just what I have heard. When you look it up it seems everyone is split. Here is an article from a study that the National Insititue of Health did with another organization:
http://foodconsumer.org/7777/8888/G_eneral_H_ealth_34/022202272008_Tanning_beds_help_vitamin_D_deficiency.shtml

Good luck,

achilles2

By the way was the Vit D supplement you took D2 or D3, because D3 is the one the body needs. Also be sure to check the inert ingredients it could be that if there are fillers you could be reacting to the brand's fillers.
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535882 tn?1396580285
yes i feel better, but it's also taken a year and a half of med adjustments changes ups and downs to get it close to right and im still working on it,   but not everyone goes through this . some adjust well and 3 months later are good , but not everyone, Kevin
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649848 tn?1484935765
Some people simply do not seem to produce vitamin D...... I spend the majority of work day in the sun, yet, I have to supplement vitamin D. Apparently, my body doesn't produce it.  It that's the case with you, a tanning bed will not help.

Also be careful, because there are other problems with using tanning beds. Research carefully.
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215461 tn?1331866365
Kevin-  I guess that is all I can expect.  I'm sure I have a long, long journey to go, but at least you do feel better.  I guess any improvement is good lol.  If I can look at the mountain and know there is an end, it will be easier than looking at the mountain that just goes on forever!  I will be picking your brain =).

Barb-  I would get natural sunlight, but I live in MI and we don't have that here lol.  If it were just the sickness I would take the D, but the heart racing I can't handle.  I feel like I'm going to have a heart attack after I take it.  
I was only thinking of a way to raise D short term before surgery.  A little bit anyway.  I know there are many risks though.  Sigh, why can't anything be easy?
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535882 tn?1396580285
it can go the way it did with me and alot of people posting on here (that's why there are still here) but i remember a few , that were sick the same time i was  had the operation and recovered quickly  and are well a few months down the line , that's why you never see them on here any more.  so it's hard to say,  just like everything with the thyroid it will take a few months to rebuild your levels and start to heal yourself,   but I'm sure your aware of it,  but alot of people heal up, get the right dose  fairly quickly maybe one,  2 adjustments and there not sensitive to the med feel good and are fine, and they go on with their lives ,  so hang in there. Kevin
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1139187 tn?1355710247
I read that after thyroid removal you need rai.   Then after the rai you will start thyroid.   I'm not sure why this happens.  Sounds like people need thyroid at at least a smaller level right when the thyroid is out.  
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215461 tn?1331866365
You only need RAI if you have cancer.  HOPEFULLY I do not have that, but I guess it is always a possibility unfortunately.  
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215461 tn?1331866365
I do know that they wait a little bit because you can have an initial dumping of hormones when they remove the thyroid.  This could cause a thyroid storm. I had the choice of RAI, or removal.  I chose removal.  Like I said, unless I have cancer, I will not ever need RAI.
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1139187 tn?1355710247
Well I hate to admit this but you and I are very similar in issues.   I wanted to know if getting my thyroid out would solve my problem.   I guess I will finally know......
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215461 tn?1331866365
I have to be the guinea pig lol?  I have been reading stories of people going on like this for years.  Their thyroids never seem to die.  In hindsight, my symptoms have always been more hyper than hypo.  In fact when it first started I had horrible insomnia, night sweats, and heart palps.  I bet my heart rate was faster too, but at the time I never really paid attention to it.  I did exercise and have trouble breathing with excessive heat.  Through out the years I have had this.  They say once you go hypo, your most likely will not have the hyper episode again, but mine has never fit this scenario.  I know a girl that had it for 10 years and her thyroid is still not dead (she is finally getting it removed).  I have heard success stories with removal though.  I don't think it will be easy, the only difference will be that I will not fluctuate back and forth constantly.  I have so many issues from this happening.  It is ruining my body, all parts of it.  I will let you know how it goes though.  I can only pray I get some relief.  I hope yours settles down too.
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1139187 tn?1355710247
Hashimotos peeps have both hypo and hyper.  Putting all the kookyness and wizardry to the side that you read about on here quite often, the bottom line is biology.

The antibodies of hashimotos disease have to be supressed.  This is done with obviously thyroid replacement and selenium.  It also depends where you are in the stages of the disease.  Despite this crap starting with me a year ago, i still think im at the middle stages of the disease.  You may be right around where I am as well.

If you get your thyroid out, you will have a couple months of hardship and then you may get better.   Its a very patient process and trust me i am about out of patience with this crap.


Im very interested to see what happens with you.  I hope the best for you.

bruce
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215461 tn?1331866365
If my hashimoto's would stay in hypo land most of the time, I wouldn't even consider surgery.  Unfortunately, the hyper has been hanging around several years in brief episodes, and severely for the last year.  I'm just taking my chances that having my thyroid removed will make me feel better.  I know stress plays a major part in this disease.  Unfortunately I am ALWAYS stressed.  I don't see my antibodies ever going into complete remission.  I've spent the last year hyper, and at times hypo, but AT least I know when I remove my thyroid I will be hypo.  I will not be hyper again unless the meds are too much.  I plan to go very very slow though.  I'm not patient enough to let my thyroid die, and at this point it's not even safe to do so.  This hyperness is not doing well with my heart.  My heart rate should not be 160 at rest.  I think it's dangerous to keep this up and something worse could happen!  It could take YEARS for my thyroid to really turn hypo and I don't have the time to spare.  I have now developed another autoimmune condition (and who knows if I have more).  The constant stress of my thyroid is literally causing other diseases to harm my body.  I really hope this works.  I appreciate your well wishes.  I wish you the best too.
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649848 tn?1484935765
Antibodies are not what make a person go hyper or hypo....... antibodies are those nasty little critters that are chomping away at your thyroid, killing it off cell by cell (what a horrible picture --- lol) ...... The thyroid is what makes you hyper and hypo, by either producing too much hormone or not enough......

Thyroid medication does not suppress antibodies...... thyroid medication simply replaces the hormones that the thyroid no longer produces.  Antibodies go into remission (don't go away, just become inactive) when there is no "live" thyroid tissue left to chomp on....

I spent about 20 yrs swinging back and forth, between hyper and hypo, before I finally went hypo and have stayed there.........

Thyroid removal is hardly ever done, simply because a person is hypo; it's done because of Graves Disease, cancer, Hashitoxicosis, etc........

Dani -- wishing you the best of luck.......
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215461 tn?1331866365
20 years, what a nightmare!!!  I don't have that kind of dedication lol.   If I'm gonna have antibodies, I wish they would chomp it away all together instead of torturing me!  In the past I had hashimoto's with short periods of hyper (feelings anyway, my endo at the time never tested me for anything).  It wasn't until the last year that I developed the almost constant hashitoxicosis.  Thank you so much for the well wishes.  I really appreciate all the feedback.  It really does help to talk about it!
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1670226 tn?1334255874
im glad your feeling better..thats good to know if i have the RAI that i will be better..Dani best luck to you..we all have battles we have to fight..life is full of them..we have to make our choice as to what right for us..and its good to have people helping you to give you advice ..im so glad to have found this site..it helps me so much and gives me hope..thank god for this site..
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1139187 tn?1355710247
Barb,  

Then why don't we just have rai and be done with it?
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1139187 tn?1355710247
This talks about rubbery thyroid.  http://ehealthmd.com/library/hypothyroidism/HYO_causes.html
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215461 tn?1331866365
Yep, I have the rubbery thyroid, although I wouldn't consider 4 years the beginning stages of my disease (unless it started to feel that way years ago).  I had a bad endo at the time, so he would have never noticed.  Maybe when they take it out they can bounce it around.
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1139187 tn?1355710247
This has been a very interesting thread for me as I have wondered the same thing, what would happen if i had my thryoid out and just went on replacement.

Today was the worst day ive ever had since i started this mess a year ago.

SO today I get a call from a friend who is pain doctor at a hospital in Calfornia.  He tells me that one of his patients who he was giving a back injection to told him that she had her thyroid removed because of hashimotos and is doing 100% better. Words of encouragement!  Now im seriously wondering if this might be good.

My harvard endo told me that they only do them for hashis when the goiter is too painful.

Have you talked to anyone else who has had this done?

Bruce
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215461 tn?1331866365
I know 3 people as personal friends in real life that have had their thyroids removed due to hashi's. Two of them are old ladies now and have had no problems ever.  In fact, they were really surprised about the symptoms people have afterwards.  The one lady said her doc made her wait a year trying meds over and over while she still had her thyroid.  She bounced around and it couldn't be controlled.  She said it was horrible, and at some points she couldn't even lift her legs to walk up the stairs.  She said he removed it because there was no controlling it and she has felt great ever since.  One girl went to school with me (same age) and lived a few miles from me.  She has hashi's and it was causing problems.  She did not have nodules (like me) just a big goiter.  When her thyroid was removed they found she had cancer on the actual thyroid! That one concerns me the most.  She said for 2 weeks she was kind of a zombie and stayed with her mom for help, but after that she was great.  She said she leads a normal happy life now without any problems.  Actually, I forgot, I know another lady related to my sister's hubby.  She also had problems.  They removed hers because it was suspicious for cancer (she had cancer in other areas of her body).  She felt great for several years (but died later of cancer in other areas).  I know a friend of a friend that had her larger goiter removed and she is fine, but she didn't really have problems to start with.  I have heard other accounts on here and online of course, but usually people are posting on here because they need help.  These are the ones that it didn't go smoothly with (this would be the case for any surgery).  I try to keep that in mind because of all the individuals I know personally who are feeling better.

What is going on with yours?  Are you going hyper?
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649848 tn?1484935765
People who are feeling well, rarely seek out forums like this...... I'm sure there are a lot of people who have had successful TT, that we don't hear about.  At least you know people who are feeling well, following TT, so it's possible.....

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1139187 tn?1355710247
what about RAI as opposed to TT?   Now that is something i would consider!
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215461 tn?1331866365
That is the big choice you have to make.  My endo would rather have had me choose RAI.  I didn't because I have a 5 year old son and I am a single mom.  I couldn't really be away from him that long.  It just never felt like the right option for me.

When I seen the surgeon he was happy I chose surgery.  He said I definitely made the right choice.  With the different rates my thyroid takes in iodine it could have been a long and horrible journey of my thyroid dying off.  Sometimes it can even be unsuccessful.  It takes a lot longer to get on meds and get to the right place.  Surgery however has greater risks, if you you look at it differently.  It is all up to the individual!
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215461 tn?1331866365
It does give me hope =).  If I didn't know these people personally, I might be running fast in the other direction lol.
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1139187 tn?1355710247
Can you do me a favor and hurry up to get your thyroid removed so i can see if it works?

LOL
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I agree that people satisfied with their treatment do not frequent forums like this.  Someone will occasionally post a success story, but that often gets lost in the shuffle pretty fast.  Some of us long-timers are successes, too, but we don't exactly tell our story every week!  I haven't had a TT, but my neighbor did at about the same time I was diagnosed with Hashi's.  They had suspected thyroid cancer in her case, and pathology confirmed that.  She's doing wonderfully and never seemed to have a problem adjusting to meds, etc.  Good luck with your surgery.
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215461 tn?1331866365
Thank you for the comment.  I'd love to hear the long-timers stories =).  
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I did okay with my TT; I did not have the hasi though, graves/hyper/toxic goiter.

I did gain weight at first because you go hypo. It took a year to get dosage correct.

It did not alter my life in anyway, still work, mother, wife, sister, friend. The TT was done about 16yrs ago. I do have other health issues, but not one related to thyroid as far as any doctor can tell.

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1139187 tn?1355710247
heres what thyroid manager says about removing it with hashis.  Not very much on it but still:

Surgery has been used as a method of therapy. This treatment, of course, removes the goiter but usually results in hypothyroidism. We believe that it is not indicated unless significant pain, cosmetic, or pressure symptoms remain after a fair trial of thyroid therapy, and probably steroid therapy, but is appropriate in some cases. Among patients with postpartum thyroid dysfunction, the most common type is destructive thyrotoxicosis and simple symptomatic treatment, using beta-adrenergic--antagonists, is usually sufficient(109). In the case of postpartum hypothyroidism, replacement with a submaximal dose of T3 is useful to relieve symptoms more quickly and to predict spontaneous recovery which is detected by an increase of T4.
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215461 tn?1331866365
Totie-  You can live a life, which is more than I can do now!  There is hope.  Thanks for sharing.

Bruce- I am on a beta blocker, and though it does help, I still cannot live a life and I still bounce between hypo and hyper.  All a beta blocker does is slow down the heart for when it races.  It doesn't stop the thyroid from misbehaving (at least not in my case).
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1139187 tn?1355710247
I did the beta blocker thing.  It just made me very tired.  It may be contributing to your fatigue.  WHat are you taking and how many MG?

you know there are other things you can take that may help you without having to take that route>?   you probably have palpatations because of the hypothyroidism.  When i got on HC (cortisol) the palps left immediately.  I got off the HC and they came back, but then i got on thyroid and they went away.  Seems like the only time i get them is in the morning.  i take the thyroid and they go away, but of course i have other misery that comes on (as you described above).

bruce
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215461 tn?1331866365
Fatigue is not my problem! If anything I don't have enough fatigue.  Heart racing and shortness of breath are my worst symptoms.  I only take 12.5 mg of atenolol a day.   I have only been hypo one time in the last year!  I tend to get palps when I am hyper.  I now mainly get them once a month, when everything is horrible. If I am hyper, I get them all the time.  My case is a little different than yours in that I am not hypo any longer.  I swing borderline hypo every now and then, but after my tsh shot up to 26, it went down to normal, and now hits me with spurts of hyper.  I do have hypo symptoms as well though.  If I was more hypo like you, I could definitely be on thyroid meds as I used to be.  Unfortunately, I am not in the same boat you are.  You are truly hypo, and I no longer am.  
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1139187 tn?1355710247
Did you have a sonogram?  Any nodules?
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1611319 tn?1378621999
Okay, I have to post now!  My father had a TT many, many years ago.  He is now 85 years old and does not have a computer, so I will speak for him.  
It is amazing the difference between he and I.  I have hypothyrodism and Hashimoto's.  since his TT, he is only on Synthroid.  It never changes.  As long as he does not switch up the time he takes it and only takes it with black coffee and does not eat for 1 hour, His levels santaya constant normal range!  All of his thyroid labs..(FT3, FT4) are always right on target.  And he feels great now.  No Swings, No Hyper.  Nice BP and HR.  
I am more than half his age, and he does better thyroid wise then me any day.
He says he is thrilled with his TT.  Has no regrets.  He has had no problems whatsoever.

Danie, If this is what your surgeon is recommending, and this is what you are happy with, then I say go for it.  It is safer for you and your son than the RAI.


SASS
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215461 tn?1331866365
Thanks, I know a lot of older people that have been just fine with it forever.  Thanks for the inspirational story lol, it's nice to hear them too!

Bruce- I used to have nodules.  They disappeared,  I now have just a large goiter.  I did have an uptake which verified I was hyper.
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1139187 tn?1355710247
Sharon,

Why dont you have a TT?  have you considered?

Danni,

May i ask how they performed the uptake?

I have never done this.  I am going to request this maybe on thursday.  I dont care anymore.  I feel so horrible on or off synthroid.  Swingin back and forth all day long.  Back and forth, back and forth.  Ears ringing and buzzing, burning off the hook one minute,  An hour later exhausted and cold.  
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1611319 tn?1378621999
Bruce,

Why would you possibly ask me that question?
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215461 tn?1331866365
I know the feeling!  Unfortunately, some cases of hashi's cannot be controlled with meds not matter what they do.  With the uptake they just give you some radioactive iodine (I had to drink it in a straw) and get an injection.  They then take a bunch of pics immediately, and when you come back in 24 hours when they will take pics again to see how your thyroid took in the iodine.  I am SUPER sensitive to everything and I didn't have any effects from it. The percentage of iodine my thyroid took in was similar to those with graves disease.
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649848 tn?1484935765
Thyroid meds do not control the Hashi's antibodies, they only control the hypothyroidism that results from the antibodies destroying the thyroid.  

danie -- have you been tested for Graves?  Some people have both Graves and Hashimoto's antibodies......

Have you considered bringing your surgery date closer?
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1139187 tn?1355710247
Sassy,

Because you said your dad did and he is doing well.

Barb,   I had both graves and has his antibodies but was told that you take the higher number and that's what you have?
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215461 tn?1331866365
I didn't have the graves antibodies at the time of testing, but I'm not so sure of the results.  My hashi's antibodies were gone at the time too when a few weeks prior they were close to 300.  I'm not sure how that changed so drastically in 2 weeks, or if I really could have graves antibodies or not.  I know I tested positive for 2 different types of antibodies (the docs assistant threw this out in passing, so I don't know the details of that one yet).  Surgery is a month away now.  With my new mouth issues it is probably best I wait.  They might want to get this under control.  I'm waiting on biopsy results =(.  It could be ANOTHER autoimmune disease attacking my tongue and mouth
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1611319 tn?1378621999
Bruce,  

My Father had Thyroid Cancer.  That was the reason for his TT.  I do not.  I only have multi-nodular thyroid, Hypothyroid, and Hashi's, as far as my thryoid goes.  I will be tested for parathyroid in July.  .  My endo has never considered or mentioned a TT for me. Why would he?

I am on .112 synthyroid as of now. Conversion will be checked in July also.

sass
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1139187 tn?1355710247
I'm sorry,I did not realize he had tt for cancer.  Makes sense now.
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649848 tn?1484935765
There are 2 antibodies that are used to diagnose Hashi's........ those are TPOab and TGab; some have only TPOab, some have only TGab, some have both, but either or both, will bring a dx of Hashi's.  To confirm Graves, you would need to have a TSI test done.
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1139187 tn?1355710247
The test is called tsi?
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Thyroid Stimulating Immunoglobulin.
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1139187 tn?1355710247
and if this test shows positive for antibodies over the normal level, this means you have graves?   Not to sound like a moron, but i was told by idiot doctor # 16 that i had the graves antibodies but my hashimotos antibodies were a little higher so the graves didnt count.  This could explain a lot.  If this is the case, will dannie and i be sharing a hospital room together.
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Yes, TSI is the definitive test for Graves'.  Sorry, doctor #16, this isn't a competition, you can have both!  You must have had a TSI with all your testing, Bruce.  Don't get too excited, having both Hashi's and Graves' is VERY rare.

I suspect that danie's two antibodies are TPOab and TGab as Barb suggested above.  I'm positive for both as well.
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MI
1756321 tn?1499064984
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Queensland, Australia
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657231 tn?1453836403
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Northern, NJ