# subclinical hyper, Graves, TED



## msmanatee (Jul 12, 2011)

Just a quick post to say hello and thank everybody for this board.

I was recently diagnosed subclinical hyperthyroid with moderate TED. Had an uptake scan confirming Graves (diffuse). Have had bloodwork run a couple of times, normal T3 and T4, almost no TSH. Taking prednisone for eye swelling. Today I was told by endo to choose either RAI or surgery since my antibodies are "sky high" and I can't stay on pred indefinitely. Told anti-thyroid meds won't work on subclinical hyper.

One test just came back 8.53 which she thought was amazing. Unfortunately we were on the phone, she speaking rapidly, and I only wrote "TtropRA" illegibly and it means absolutely nothing to me. Would anyone care to guess what she said that made me write that?

Anyhow, she thinks surgery best but eye doc says that's too risky and wants RAI. (warning: rant) I am amazed at how hard it is to reach any basic consensus. Too many docs involved and the patient is becoming more confused by the day! Labs and tests are misplaced/not delivered promptly or in correct formats. The ophthalmologist surgeon doesn't do basic tests and refers me to another ophthalmologist for those. I'm told to see an ENT surgeon next week.

All I do is go from appointment to appointment and none ever go smoothly. Today the endo said I'm taking far too much time to decide what to do and do I want her to decide for me? Honestly I am not at ALL sure about that.


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## msmanatee (Jul 12, 2011)

Update. I fired them and found an ophthal and endo who are actually educated about the various studies and findings that I was concerned about. The new endo thinks a course of ATD is worth trying (not on yet) and the new ophthal agreed that RAI is not wise and in fact doesn't think I should treat the thyroid at this time. Neither of them brought up block and replace, though and the ophthal said I might have to consider strabismus surgery while still in hot phase because my double vision is increasing.
Question: can anybody point me toward studies/articles/info about block and replace?
Thanks.


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## Andros (Aug 26, 2009)

msmanatee said:


> Update. I fired them and found an ophthal and endo who are actually educated about the various studies and findings that I was concerned about. The new endo thinks a course of ATD is worth trying (not on yet) and the new ophthal agreed that RAI is not wise and in fact doesn't think I should treat the thyroid at this time. Neither of them brought up block and replace, though and the ophthal said I might have to consider strabismus surgery while still in hot phase because my double vision is increasing.
> Question: can anybody point me toward studies/articles/info about block and replace?
> Thanks.


Hi there; glad you found some doctors you can work with here.

Really it is not advisable to have any eye surgery until all is quiet with the eyes. You can get prisms to correct the double vision.

Definitely give the ATD a go. I am sorry but I don't have any credible studies to share on block and replace. It certainly is a viable option though.

Graves' is a terrible mess. I am so sorry for this on your behalf.


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## AZgirl (Nov 11, 2010)

msmanatee,,,,,,,,,,,,,,,,,,,,,,,,this is right from eileen moores website
Block and Replace Protocol

In the block and replace protocol, patients are kept on the usual starting doses of ATDs until they become euthyroid. Then, rather than decreasing the ATD dose, a low dose of thyroxine is added to the regimen. Patients following this protocol are thought to have more stable thyroid levels and they are less likely to become drug resistant. In the original studies of Yamamoto, thyroid function was assessed after one year by an RAI uptake scan. At uptake levels less than 25%, the drugs were weaned. This approach effectively predicted probable remission. With this protocol, remissions were reported to be achieved in more than 90% of patients.

In some Block and Replace protocols, the drugs are slowly weaned over time until patients remain on a low dose of levothyroxine alone. This helps to reduce glandular activity and diminish thyroid hormone production. Usually, patients are kept on a low dose of levothyroxine or Armour thyroid for 1 year or indefinitely if thyroid function appears stable.

Block and Replace Protocol

In the block and replace protocol, patients are kept on the usual starting doses of ATDs until they become euthyroid. Then, rather than decreasing the ATD dose, a low dose of thyroxine is added to the regimen. Patients following this protocol are thought to have more stable thyroid levels and they are less likely to become drug resistant. In the original studies of Yamamoto, thyroid function was assessed after one year by an RAI uptake scan. At uptake levels less than 25%, the drugs were weaned. This approach effectively predicted probable remission. With this protocol, remissions were reported to be achieved in more than 90% of patients.

In some Block and Replace protocols, the drugs are slowly weaned over time until patients remain on a low dose of levothyroxine alone. This helps to reduce glandular activity and diminish thyroid hormone production. Usually, patients are kept on a low dose of levothyroxine or Armour thyroid for 1 year or indefinitely if thyroid function appears stable.

http://www.elaine-moore.com/Article...ravesandHyperthyroidism/tabid/68/Default.aspx


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## AZgirl (Nov 11, 2010)

sorry i repeated that, but i guess i was so excited to get that information to you!


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## msmanatee (Jul 12, 2011)

Thank you Andros and AZgirl! Since I'm subclinical hyper, I think I'm "already" euthyroid, technically? But I will check this out! It's sure apparent that we can't leave a single stone unturned re Graves and TED.

The one factoid I can't let go of is that TT and RAI do NOT guarantee antibody levels will go down. I'm told they will "leave the body faster" yet know of someone who developed TED thirty years after their thyroid was removed.


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## Andros (Aug 26, 2009)

msmanatee said:


> Thank you Andros and AZgirl! Since I'm subclinical hyper, I think I'm "already" euthyroid, technically? But I will check this out! It's sure apparent that we can't leave a single stone unturned re Graves and TED.
> 
> The one factoid I can't let go of is that TT and RAI do NOT guarantee antibody levels will go down. I'm told they will "leave the body faster" yet know of someone who developed TED thirty years after their thyroid was removed.


If the doctor does not keep your TSH suppressed which in most cases keeps the antibodies very very quiet if in fact non-existent, yes..................one could get TED/GED 30 years later or at any time for that matter.

A good doctor is integral to any decision you make. Because we all need after-care for the rest of our lives.


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## Erinc (Jul 16, 2011)

Once you have thyroid eye disease and it runs it 2-3 year course, can you get eye disease again in the future? Or is it a one time thing? I was told the disease is self-limiting and will burn out.


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## Andros (Aug 26, 2009)

Erinc said:


> Once you have thyroid eye disease and it runs it 2-3 year course, can you get eye disease again in the future? Or is it a one time thing? I was told the disease is self-limiting and will burn out.


Tch; I sure wish I could agree w/that statement but something tells me that is not true. All the info I read says "usually" self-limiting.

There are cases of recurrent GED/TED if you care to Google it.


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## msmanatee (Jul 12, 2011)

Update. I went to a third endo. Labs came back completely normal, even TSH (but didn't test antibodies or Free T3/T4, just the basic panel). So he said I should not start ATDs yet. I had no idea labs could jump around that much.

I have been MIA on the board due to non-medical reasons but also preoccupied looking up euthyroid Graves and TED. There is a small subset of folks like me out there, apparently. My TED is still very active.

Erinc, I have read of people getting recurrent TED but it is unusual.


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## Andros (Aug 26, 2009)

msmanatee said:


> Update. I went to a third endo. Labs came back completely normal, even TSH (but didn't test antibodies or Free T3/T4, just the basic panel). So he said I should not start ATDs yet. I had no idea labs could jump around that much.
> 
> I have been MIA on the board due to non-medical reasons but also preoccupied looking up euthyroid Graves and TED. There is a small subset of folks like me out there, apparently. My TED is still very active.
> 
> Erinc, I have read of people getting recurrent TED but it is unusual.


How is your ophthalmologist treating your TED?

Good to hear from you!


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## AZgirl (Nov 11, 2010)

first, with your very first post, i think you asked what we would guess is your "scribbled" writing meant.... TtropRA,,, could it of possibly be TRab? This is a very important test that we should take at least 2 times a year. it is Thyroid Stimulating Hormone Receptor Antibody (TRAb). it is our absolute test for possitive antibodies for GRAVES. Im sorry i dont know how to answer your question,,but your saying your FT3 and FT4 and TSH are normal, but yet you have high antibodies? The only way i am aware of getting those antibodies down is by ATDs. I certainly would not jump to RAI if your eyes are being effected! And shame on a doctor for trying to RUSH you into a choice quickly!


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## msmanatee (Jul 12, 2011)

Andros and AZgirl, thank you for replying to my confused cry in the wilderness!  I've become so confused. It is taking me forever to work through all these antibody test acronyms yet I still don't think I'm quite at the bottom of it (even after googling all the combinations and combing labtestsonline). I further complicated matters by consulting a third endo (and third eye doc). Ignoring the T3s and 4s for the moment (he did order free T4 Index, normal), here's my lab history in a nutshell:

I had first labs 6/8, second set 6/16, third set 7/1, fourth set 8/22. After the third set, I had RAIU and then ultrasound. Uptake indicated Graves, scan was relatively normal.

TSH went from 0.006 to 0.01 to 0.02 to 0.59 (ranges varied but you get the idea).

I had two antibodies tests, both on 6/16. TSI was 349. Thyrotropin Receptor AB serum was 8.53 (range .0-1.75). I think you were right about the scribble, AZgirl, that it refers to the latter test which is also TRab?

I also have abnormally low DHEA sulfate, which I understand is a steroid produced in adrenals? Interesting since I've been on prednisone all summer (began at 40 mg and currently tapered to 20) but perhaps there's no connection.

Well I think I've provided enough confusion for one post.


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## msmanatee (Jul 12, 2011)

AZgirl said:


> but your saying your FT3 and FT4 and TSH are normal, but yet you have high antibodies? The only way i am aware of getting those antibodies down is by ATDs. I certainly would not jump to RAI if your eyes are being effected! And shame on a doctor for trying to RUSH you into a choice quickly!


I don't know what my antibodies are now. The last endo said do nothing because TSH, T3** and T4 are fine and I think that is actually protocol but somehow I don't think that means everything is okay. My eyes are a little worse, I was sweating like crazy all night, palpitations are a little lighter and less frequent but haven't gone away completely. Gah, so weird!

**Edit: Apologies, my T3 total is 60 (range 76-181).


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## msmanatee (Jul 12, 2011)

Andros, the third ophthalmologist said he could treat me now but would not treat me until I quit smoking. I asked what treatment he was withholding and he said botox for my lid retraction and strabismus surgery. I told him I would have declined since I'm in active TED but I was going out to have a cigarette and a long think.  He also refused to check my proptosis ("I don't do that every time"). He threw a sample of Combigan at me but didn't explain what it was, even after I asked specifically.

So I am sticking with my first ophthal, who doesn't treat TED but has been there for me since Day 1.


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## Andros (Aug 26, 2009)

msmanatee said:


> I don't know what my antibodies are now. The last endo said do nothing because TSH, T3** and T4 are fine and I think that is actually protocol but somehow I don't think that means everything is okay. My eyes are a little worse, I was sweating like crazy all night, palpitations are a little lighter and less frequent but haven't gone away completely. Gah, so weird!
> 
> **Edit: Apologies, my T3 total is 60 (range 76-181).


If you are not feeling well; things are not okay. Why won't a doctor run your FREE T3?

We know you are hyper based on the existence of Thyroid Stimulating Immunoglobulin (TSI.)

Can you tell us why you are on prednisone?


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## msmanatee (Jul 12, 2011)

Andros said:


> If you are not feeling well; things are not okay. Why won't a doctor run your FREE T3?
> 
> We know you are hyper based on the existence of Thyroid Stimulating Immunoglobulin (TSI.)
> 
> Can you tell us why you are on prednisone?


Hi Andros! I should have asked the new endo exactly what labs he was ordering as you're right, I knew FREE T3 and T4 are the significant numbers! But the PA wrote up the lab order and I didn't look at it until I got to the lab, then decided to just go along. I will call the endo office tomorrow to request the frees be done. Do you think it's too soon to request antibodies? And I'm now even wondering if there are antibody tests I haven't had that I should have had, in case there is something else going on, too. It's another month to the next endo appt if I do nothing...

My ophthal suggested pred for my TED symptoms but I have had a lot of swelling all along, so not sure it's been too helpful. BTW, I know I should not smoke, I didn't mean to sound cavalier about that. I just get too aggravated sometimes!


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## AZgirl (Nov 11, 2010)

Ok, i might of missed a few things here and there on this whole post... but from what i understand, i think, you are confirmed with graves..i think,,, assuming this is what you do have, your TSI antibodys will drop only once you go on antithyroid meds. Once you do that, doctors do not ususally check your TSIs or TRabs until at least 6 months later, at least. It will take a while and a lot of patients waiting for those TSIs to drop. The higher your dosage, the better for lowering your TSI, howver, the more HYPO you get too, if your like me, FAST! and i swear nothing is worse then being mismanaged with to much meds. You most DEFINATELY need your FT3 and FT4 along with your TSH lab results. With any luck, your endo will adjust your meds according to your FT3 and FT4 and NOT your TSH, howver, you still need to get that lab done as well. I know you hate to hear it, and im sorry, but please put that cigerette out, it does aweful things to those eyes with graves! even 2nd hand smoke, However, it is also known that with sore eyes, sometimes they get better once your meds put you in a stable range...let us know what happens when you call the doc. Also, when you post results, make sure you include your ranges as some ranges are different with different labs.


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## msmanatee (Jul 12, 2011)

Thanks, AZgirl. Apologies for being all over the place (brain fog). I have never been on any thyroid med. Here are my latest labs (Aug 22):

TSH 0.59 (0.4-4.5)
T3, Total 0.60 (76-181) Low
T3 Uptake 35 (22-35%)
T4 (thyroxine), total 4.8 (4.5-12.0)
FREE T4 Index (T7)1.7 (1.4-3.8)

So no need to repeat TSH yet. Assuming that last number IS FREE T4, I will request Free T3 and if I get nowhere, order it myself.

Oddly, I've thought I had hypo symptoms all along and the prednisone side effects make it harder to attribute symptoms. I'm left wondering... is this spontaneous remission, or something else?


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## Andros (Aug 26, 2009)

msmanatee said:


> Hi Andros! I should have asked the new endo exactly what labs he was ordering as you're right, I knew FREE T3 and T4 are the significant numbers! But the PA wrote up the lab order and I didn't look at it until I got to the lab, then decided to just go along. I will call the endo office tomorrow to request the frees be done. Do you think it's too soon to request antibodies? And I'm now even wondering if there are antibody tests I haven't had that I should have had, in case there is something else going on, too. It's another month to the next endo appt if I do nothing...
> 
> My ophthal suggested pred for my TED symptoms but I have had a lot of swelling all along, so not sure it's been too helpful. BTW, I know I should not smoke, I didn't mean to sound cavalier about that. I just get too aggravated sometimes!


Here is a news flash for you from one Grave's patient to the other.

http://jcem.endojournals.org/content/94/4/1324.abstract

Does this not freak you out? Now is not the right time to stop but you will. I am 5 years smoke-free now. You have to firstly get things under control. If you try to stop now, you will get worse.

It happened to me and that is why I researched. I stopped and almost ended hospitalized. Went back and stabilized. Once I got on the healing pathway, joined a gym, lost some weight, hubby and I quit smoking. It was easy as pie. When you are ready ( and that will be a while), you let me know and I will give you our fail-proof program. It is so simple, it is ridiculous. We figured it out ourselves.

I had to take Pred for my eyes also and had 2000 RADS of radiation 3 times a week for 6 weeks on my eyes concurrent to the Pred. Stopped it dead in it's tracks but my eyes were severely damaged by that time. Had to have oribital decompressions etc.. I am lucky I can even see.

Anyway; the thing to do is to try to not smoke too much for right now. Don't stress over it; it will make things worse.

These are the antibody tests I recommend. Maybe there are a few you did not have?

TSI (thyroid stimulating immunoglobulin),TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/


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## msmanatee (Jul 12, 2011)

My left eye has just blown a blood vessel, I think; the white is solid red and throbbing. So I'm not calm enough to say more than I am Amazed by your link and will reply after I figure out if this is an emergency or not. Thanks so much for replying!


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## Andros (Aug 26, 2009)

msmanatee said:


> My left eye has just blown a blood vessel, I think; the white is solid red and throbbing. So I'm not calm enough to say more than I am Amazed by your link and will reply after I figure out if this is an emergency or not. Thanks so much for replying!


Oh, brother!!! Get to the ophthalmologist. I will worry until we hear from you. It is not natural or normal so don't dismiss this.

Sending hugs and saying a prayer for you!


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## webster2 (May 19, 2011)

msmanatee said:


> My left eye has just blown a blood vessel, I think; the white is solid red and throbbing. So I'm not calm enough to say more than I am Amazed by your link and will reply after I figure out if this is an emergency or not. Thanks so much for replying!


Are you diabetic? It does sound serious, please get looked at.


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## msmanatee (Jul 12, 2011)

No, fortunately I'm not diabetic, Webster. My regular ophthal is unavailable. My neuro's tech thinks it's nothing and he's not available but they'll squeeze me in to see a new guy in an hour.


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## Andros (Aug 26, 2009)

msmanatee said:


> No, fortunately I'm not diabetic, Webster. My regular ophthal is unavailable. My neuro's tech thinks it's nothing and he's not available but they'll squeeze me in to see a new guy in an hour.


I swear; is that all these doctors have to say? "It's nothing!" "I am not concerned about it!" "It's all in your imagination!" And so forth.

God bless you and do let us hear from you ASAP.

Blood vessels just don't break for any good reason; I can assure you of that. It could be iritis which is a precursor to autoimmune diseases.

http://www.iritis.org/index.php

Please do not let them fluff you off; our eyes are so so precious!


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## msmanatee (Jul 12, 2011)

Sigh. According to this doc, they do break for no reason. But he also said it was good I came in since my eyes are so congested and pressures so high, several ugly possibilities sprang to mind. Fortunately my optic nerves still look okay, so all's well for now.

Thank you so much for caring. It means a LOT. I don't have anyone to talk to. No one in my life can handle it. They keep telling me I look better and asking me if I feel better so I decided to quit talking about it. The audible relief from all quarters has been deafening.


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## Andros (Aug 26, 2009)

msmanatee said:


> Sigh. According to this doc, they do break for no reason. But he also said it was good I came in since my eyes are so congested and pressures so high, several ugly possibilities sprang to mind. Fortunately my optic nerves still look okay, so all's well for now.
> 
> Thank you so much for caring. It means a LOT. I don't have anyone to talk to. No one in my life can handle it. They keep telling me I look better and asking me if I feel better so I decided to quit talking about it. The audible relief from all quarters has been deafening.


My husband was my "only" friend during my difficult time w/Graves' so I hear you loud and clear!

Would still consider Iritis/Uveitis. Something is not right. I don't believe in this "no reason stuff!"

God bless!


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