grave's or hyperthyroid?

[vickidugg]

I was just dx hyperthyroid most probably Grave's. My endo said my thyroid was enlarged and TSH 0.009, T4 free,direct 2.51. I had a scan and there was increase uptake found out by calling on Friday. I saw the endo for initial eval with all the symptoms wt loss, heart palpatations, heat intolerance, anxiety/depression (is bad), tremors, brain fog, focus problems. It is getting harder for me to function on a daily basis. I want to start treatment quickly b/c I know there is no quick result.
He explained all 3 options but of course favors RAI. He made my next appt in May 06. So I guess I just decide and tell him over the phone. His asst. asked if I had decided on treatment. He scared me with all the side effects with ATDs'.
What treatment at the beginning is best course? And how do I know if it is Grave's?

[NURSELPN]

I sent her an e-mail.

[NURSELPN]

OK sounds good,

[HashiMan]

Since we both have Maureen's website, which also has her e-mail, she could forward an e-mail from either of us, to the other one and we'd have ability to e-mail.
I put out a newsletter, so will e-mail her one and she can forward it to you, that includes my e-mail. There is also a local website address on it, of a non-profit forum we have here in my city.
I'll give you more detail in the e-mail.
Blessings,
Jim

[HashiMan]

I'd like to add that you are in my prayers as well. Sorry you are having to go through the surgery but you'll be a lot happier on the other side of it.
God Bless You and Guide Those Giving You Care.

[NURSELPN]

Thanks Hashiman,

I'll take all the prayers I can get. I always told my patients
"a surgeon can cut you open but it takes God to heal the wound, a surgeon can't do that"

Hey, what did you mean by your earlier post?:
Maybe you and I can get in communication, through the tabtool website, if this forum is discontinued.

I looked at tabtools site & I didn't see any forum type area where anyone could talk back & forth. Just wondered????? Remember my eyes are bad...:-) Just in case I missed something.

Dr. Mark must have taken a month off. Good for him, I'm sure he works hard. Sometimes doctors have to travel for medical conventions & maybe he just extended it & took some time off.
We'll have to tell him how much we've missed him, huh? Right now, it's the ghost forum. LOL :-)

I"ve have had a chance to do some research & share my knowledge(which isn't much, LOL) since he's been gone. Hope I've been doing ok. Not misleading anyone...   Jean

                                      
                                

[NURSELPN]

Thank you for the post. I've got about 6 wks to think about it. We'll see how relaxed I feel as it gets closer...LOL  Jean

[Duchess47]

I was diagnosed with Graves Disease 4 1/2 years ago.  I am lucky to live in an area where there are great specialists in this field.  I was on medication for over 4 years to control thyroid.  It helped with the symptoms.  I'm told that if thyroid is under control, then there are generally no symptoms.  There can still be eye symptoms though.  Anyway,  I have recently come off of my meds. completely as my Endo. thinks I am in remission.  I have had a completely normal thyroid for 3 months now.  So, the gist of it is, I never had RAI and may not ever have it.  My doctors obviously do not beleive in rushing into something as permanenet as RAI unless absolutely neccessary. I have gotten 2nd opinion on this, and since both doctors are on the same page with treatment, I trust they know what they are doing.  That's the bottom line.

Good luck with whatever you decide to do.

[tabtools]

So glad that you are feeling more at ease about the surgery.

Expect all will go well for you.

Will keep you in my thoughts -- and be sending you good wishes.

Maureen

[NURSELPN]

Thank you, tabtools. I really appreciate that. I will check it out.
My decompression surgery is scheduled for 3/21. I seen the ENT plastic surgeon last Monday & he said, "even if my eye disease was in remission, because of the surgical injury to my rt. eye, the immune system will activate again & it may cause another attack that could effect either eye." So I guess it doesn't really matter.
I did get ahold of Elaine & she said my TSI was reflecting some activity yet but that was typical after RAI & over time my level will fall.
I'm not quite so apprehensive now. The ocular plastic surgeon said "there's one thing he knows about graves eye disease is that it's unpredictable."
So I'll just trust God & hope for the best.
I don't think either surgeon would consider surgery now if they didn't think it was the right time.
I wished Dr. Mark would come back soon, I really miss this nightly forum.
                       God Bless & talk to you soon, Jean

[tabtools]

Just wondering if you had located Elaine Moore, who does answer questions. Hope you have your answers.

Think you know my website address --

the page you might be interested in is the Support page, which has links you might find useful, especially as the doc is away.  


http://home.earthlink.net/~tabtools/INFO.html

It's not only non-profit, it is simply a home website -- that is, it's a very personal effort, which has had a couple of other contributors.

Hope everything is working out well. ~ Maureen

[ancientmariner]

No need to apologize! I was actually never tested for antibodies until just recently, way after RAI, but I've actually heard that RAI can make the TED worse, unless you're given steroids. (I'm not sure, but it may have been Dr. Mark who said that.) Anyway, I hope Dr. Mark is back soon, so you can get his opinions on the surgery.
Best wishes

[ancientmariner]

Do you have TED with your Graves? I'm asking because I had Graves/RAI on 2002, but didn't seem to have any TED symptoms. No protruding eyes, or any of that! I was so thankful - I remember before the RAI, I kept checking my eyes in the mirror....anyway, about 2 years before the Graves' diagnosis I was having trouble changing focus with my eyes, it was like muscle spasms in the focusing muscles. That has since gone away, but I wonder if it was thyroid-related. I also frequently wake up with blurred or double vision in one eye - it lasts for a day or two and then goes away. This has been happening since my school days (I'm almost 50 now). Do you have this? I never had antibodies tested until just this summer, so I don't know how accurate that would be after RAI.

[NURSELPN]

Hi ancientmariner,
Yes, I have TED. I've had symptoms since last May following my RAI treatment in Feb.. I don't think I had it prior to RAI but I hadn't had my eyes checked then. I think they should be required to do that prior to the administration of RAI. There was soooo many symptoms with the hyper stage...I could have & not realized it. I also had alot of difficulty focusing during the hyperthyroid period. One day my eyes would be ok & the next day they were awful. The ocular plastic surgeon I seen said TED is common after RAI. I'm glad you didn't get it but they say it can happen for many years after the thyroid attack. It doessn't matter if you are hypo, hyper, or erythroid.

They told me I will always be considered to have Graves. My question is will we always have active antibodies? My lab reading isn't very high aside of some I've seen but it is elevated.

The TED is suppose to be stable when you have eye surgery so I'm kind of apprehensive about having it right now. My lab wasn't available when I seen the plastic surgeon but he did say I wasn't in the "hot" stage. I have alot of swelling above & below the eye along with protruding eye ball on the Rt. side (not very attractive) esp., which is the one they are doing surgery on right now. I have double vision when I look up & to the side. My straight gaze is single vision unless I have had my eyes closed for a little while. Then I have double vision no matter which way I look & this lasts from 5-10 mins..

My whole facial features has changed as it now is swollen (esp. on the rt.) & harsh in appearance. Friends that I've known forever doesn't even recognize me @ times unless my husband is with me. I'm getting pretty self conscience  about it. :-(

I hope Dr. Mark returns soon so I can pick his brain... LOL...

My decompression surgery isn't scheduled yet but I see a ENT on Monday who will be assisting with it. He & the plastic surgeon will coordinate a time to do it. Then let me know.

Has anyone heard anything about when Dr. Mark will be returning?
I really miss not reading this forum daily.

Thanks for your interest. I didn't know you were a graves pt.. Well, we have something in common. Until recently I thought you were a man. With your name, I guess I just assumed, sorry.
Seems like I'm always apologizing to you...LOL...

                            Best Wishes & God Bless, Jean

[NURSELPN]

Thanks alot. I hope Dr. Mark is back soon...

[tabtools]

Happened to catch your thread -- as I'm a Hashi person, I think you need to "speak" to someone well versedin hyper thyroidism.

Without Dr. Mark -- My suggestion is Elaine Moore who answers questions at another forum.   You can find my website, and my e-mail address if you just do a google on tabtools.  

Elaine Moore co-authored a book on Graves, which she herself has dealt with.   I always direct the people with questions on hyperthyroidism to her, as she is the best informed -- besides the doctors of course.

~ M

[HashiMan]

Hi,
That is an area I have really limited knowledge in, which is true on a lot of thyroid subjects. My guess though is that the elevated TSI antibodies will not have an effect on the surgery or post surgery because antibodies are not a factor when thyroid patients have other type surgeries. It might be important if the ABs were causing significant inflammation, other than in yours eyes, in which case they might give a patient a short round of anti-inflammatory or a steroid like Prednisone, before performing the surgery but I'm not really even sure about that.
I have an e-mail for Tabtools, so will tell her you are wanting to correspond. She has a non-profit, really well put together website for informing about thyroid disease. I hope she can post that link on here soon, in case this forum is about to change for some reason. Med-Help has never minded when others have listed links and as I say, hers is non-profit and really well done.
I'll pass along the message and I'm sure she'll post to you soon. Thanks again for all the positive uplifts.
Jim

[NURSELPN]

HashiMan,

I'm want try to switch my medication from Armour to Synthroid or Levoxyl w/ Cytomel as I have Thyroid Eye disease & I think the natural hormones may be contributing to it. My f/p has never really used Armour that much & did not become familiar with it until I requested it. He really listens to me & takes my advice into consideration. Why I don't know @ times, LOL.
I am on 3 grains @ this time & my labs are as follows ...Remember I'm post RAI so you can't go by the TSH ...OK ... TSH 0.21 (0.40=5.50)   Free T-3 270 (230-420)
Free T-4 1.0 (0.8-1.8)  TSI antiboties 198 (125 or less).
I will be having orbital decompression surgery on my Rt.eye probably sometime in Febuary or early March.so I definetly do not want to go back into the hypo phase because that makes the TED much worse. I also would like to know if you or Tabtools knows anything about having this surgery when my TSI is still elevated. As I have Graves, will it always be somewhat elevated? Boy. I'm really testing your knowledge here. LOL...
If your expertise isn't in this area, can you tell me how to get ahold of Tabtools. If Dr. Mark was available I'd be asking him, but you know how that is right now...
Thanks for the kind words above. Sometimes the attitudes of some posting on this board is alittle overwhelming & I don't have the temperment or finase (spl?) to quell it the way you do.
I give Dr. Mark credit too. He keeps his direction & has a wonderful dispostion & attitude.
        
                    Keep the Faith & God Bless You Too, Jean

[NURSELPN]

Just telling the truth...Yes the one missing is the debate between Tabtools & Mshypo wasn't it? I noticed alot of her threads are missing?????????Chocobabe, too.  I'm not really surprized but it's like the forum has come to a stand still, huh.          Jean

[HashiMan]

I was just going to ask the same question! I too also notice at least one pretty filled-up thread disappeared!
I hope Med-Help didn't get upset at anything we did. We got a little heated in that one debate.
I appreciate them and don't want to cause a problem and know you feel the same.
Also; I appreciate you replies in that debate thread we had going!
Blessings,
Jim

[NURSELPN]

Do you know what's going on on this site. No new questions or no Dr. Mark since the 22nd.???? Also there's some posts missing???            Jean

[HashiMan]

Here's the actual typed out link for the article about low-cortisol in CFS patients, that confirms the NIH research but you MUST type it exactly as I list it!!

http://pn.psychiatryonline.org/cgi/content/full/36/1/20

Let me add this opinion; With research conclusions like these, it's hard to understand why Dr.s believe there is nothing to medically back them up, documentation-wise, for treating sub-clinical forms of hypoadrenalism, that plainly shows up on tests. There ARE DR.S WHO DO, but only ones who are Osteopaths and Holistic Doctors. Osteopaths are just as licensed as other MDs, plus can be Board Certified, so I wish the other mainstream Dr.s would take this more seriously and give treatment options to people suffering serious forms of adrenal fatigue. Antidepressants are commonly suggested but for some of these patients, the reaction is very adverse. ALSO: Patients with low adrenal, that's not treated before starting thyroid med, or at least treated similtaneously with thyroid med, will also have adverse reaction.
Mshypo, you were right in saying they can have "hyper" reaction like rapid heart rate, anxiety, I found many souces stating this but originally thought it would only exaggerate the "hypo" type symptoms. I sit corrected.

[HashiMan]

My friend who recently posted his question under nickname; "please Advize", had further testing that ruled out thyroid at least for now however, he got saliva tests results back in and he had one clinically low cortisol reading and others in low-normal. He also had other low readings indicating adrenal hypo-function.
Dr.s still are not recognizing how common this sub-clinical form of adrenal fatigue is. CFS in my opinion is also an "adrenal fatigue" syndrome and I've recently listed the link on this forum, for the NIH who has done studies, proving conclusively that CFS patients present with low cortisol levels.
Just to add this to the mix, there were also studies done by other reputable Academies and Centers, with results published by The American Psychiatric Association. These other researchers, that include Board Certified M.D.s, concluded the same thing about low cortisol (sub-clinical adrenal insufficiency) and that IN CONTRAST, depression & anxiety, cause "elevated" cortisol, QUOTE; "...suggests that the underlying physiology is different.."
If you want to find this article, go to google and put search words in; "Researchers Offer Theories On Chronic Fatigue Causes Christine Lehmann". (the THEORY part, is trying to find the triggers, like viral-bacterial infections).
It's hard to believe many Dr.s will not offer treatment suggestions for anything short of full blown adrenal insufficiency!

[vickidugg]

Sorry another question is....Should I have any additional labs/tests before I start on any treatment?

[Mark Lupo, M.D.]

Increased uptake without a hot nodule and the labs you mention are all consistent with Graves.  There are three options - usually I start with ATDs and discuss RAI as a back-up and quite frankly a more definitive/effective treatment in many cases.  May is a long time for the next appt -- I think you need another appt to discuss this in more detail.  Make sure you mention any eye symptoms as you are discussing this treatment -- RAI can make eye symptoms better in the long term but worse in the short term (witout adequate steroid therapy).