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Old 08-24-2011, 12:49 PM   #61
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Angry Re: New thyroid patient with questions??

Just left the MD that ran all my tests so far. He told me my levels indicate hyerT duh!! But not hashi's again duh!! He said he has to have the RAI uptake and scan to tell if it Grave's or thyroiditis rrr.... I asked isn't there a blood test to check for the antibodies present with Grave's just as there is for Hashi's? He was like no I need the scan and if I send you to an endo they'll do the same thing I'm doing! Girls I've done my research as suggested an I don't believe I'm dealing with thyroiditis. And I know dang well there's an antibody test that indicates Grave's. He wrote me a beta blocker and said come back after your scan, if it's Grave's we will proceed with RAI treatments. I asked that he send my records on to another dr.

I need a dr that listens to me! He's been my dr for almost 6 yrs and he knows I've only had hyperT symptoms and that they've been around for years!! Am I wrong?? I thought thyroiditis went hyperT and hypoT and resolves itself. I'm so frustrated but the good news is the dr my OB suggested is gonna see ms tomorrow.

Why is it they don't mind taking your money but they can't listen to you and they would rather go with more risky tests than just a simple blood draw?!!

Sorry for the rant guys I'm just Rrrr... Right now!

 
Old 08-24-2011, 12:54 PM   #62
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Re: New thyroid patient with questions??

And I double posted! Argh!!

 
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Old 08-24-2011, 01:06 PM   #63
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Re: New thyroid patient with questions??

Rant away it helPs. Your MD there is certifiable. As the village idiot. Did you tell him you wanted him to write you a request for a full thyroid antibody panel including TGAB, TSIAB, and TRAB? Regardless give this backend of a donkey his walking papers.

Call your OB back request a lab draw through them for the antibody profile. The sooner it is done the sooner you will get you information back. Ugh! I think you need to imagine being my version of a proctologist. In reality I have three pairs of steel toed boots. I am not afraid to use them.

I am so sorry you are having to do the MD shuffle. Heck I went through five Endos. GPs do not corner the market on deity complexes and idiocy. I love the look on their face when you stand up in the middle of their lecture and say, "You are fired. You do not meet the requirements for the position as my MD."

Fond memories there. That and forcing the MDs to prove me wrong by running a list of bloodwork tests for me. I love being right. Who knows our body's better? Hum? We have to live in these dang things! SNORT! Okay I will stop my sympathy rant.

MG
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Last edited by mkgbrook; 08-24-2011 at 01:09 PM.

 
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Old 08-24-2011, 01:14 PM   #64
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Re: New thyroid patient with questions??

thank you for your sympathy rant
I go to the new dr at 3 tomorrow that my OB referred me too. I plan to ask them for the panel. I really didn't want to ask the dr for anything today other than to get out of my face! I so wanted to punch him lol!

 
Old 08-24-2011, 01:24 PM   #65
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Re: New thyroid patient with questions??

Oh, been there! Thyroid can severely impact your emotions and mood. When I had hyperT to hypoT swings my cat would walk in the room and I would want to kick her. My husband came home one evening, I just looked at him and he turned around and left the house for another two hours and brought me flowers back! Yeah it is better to vent where it is understood. I hope that you really get a true artist tomorrow. MDs due practice the ART of medicine afterall your last MD is stuck on stick figures.

MG
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Old 08-24-2011, 01:26 PM   #66
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Re: New thyroid patient with questions??

Well you definitely need a new doctor. This one knows nothing about thyroid disease. TSI is absolutely an antibody test that will tell you if you have Graves. Did you mention the test by name? I bet he has never even heard of it. TSI stands for thyroid stimulating immunoglobulin which means antibodies that stimulate the thyroid to produce more hormone. If you have these you have Graves. The fact that he wants to rush you into RAI if the scan shows Graves is scary too. Do your research on that one before you make that decision. You do have options....ATD's, surgery, or RAI. Don't let any doctor convince you that you have to choose one option over the others. You have to make that decision yourself, based on what is best for you and your family. Many that have had RAI find that it brings on or worsens Graves Eye Disease. This is something many doctors fail to mention to their patients. Sadly most doctors do not have sufficient knowledge of thyroid disease. This leaves so many undiagnosed, misdiagnosed, or mismanaged in their treatment. I agree that you do not have thyroiditis. I am frustrated for you. You have gotten some lousy treatment.

 
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Old 08-24-2011, 01:47 PM   #67
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Re: New thyroid patient with questions??

Oh he did tell me that there is a possibility that the thyroid can be completely killed using RAI treatments. So my question is doesn't that mean meds forever? So why can't you try meds first?

Last edited by Gemsrite; 08-24-2011 at 01:50 PM.

 
Old 08-24-2011, 01:53 PM   #68
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Re: New thyroid patient with questions??

Can I just say once again that you guys are awesome! I'm at the beginning of the battle that you guys have already faced and are kind enough to share your experience and wisdom

 
Old 08-24-2011, 03:27 PM   #69
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Re: New thyroid patient with questions??

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Originally Posted by Gemsrite View Post
Can I just say once again that you guys are awesome! I'm at the beginning of the battle that you guys have already faced and are kind enough to share your experience and wisdom
Yes, the thyroid can be completely killed with RAI. High doses of radioactive iodine that kills the thyroid and effectively makes you hypothyroid for the rest of your life. You can also have your thyroid surgically removed which again would make you hypoT and you would need thyroid hormone for the rest of your life but you would not have ingested radioactive iodine. Antithyroid drugs are also an option that many prefer to try before they do anything permanent. These meds will bring your thyroid levels back down. They could also send you hypoT if you are over medicated so frequent labs are useful. If you have surgery or RAI you will become hypoT and need to replace that missing thyroid hormone for the rest of your life. If it were me, I would try the antithyroid meds first and see how I do on them. But I would definitely be open to a permanent solution if need be. You are so welcome for the help. I have learned so much from this board and tons of online research. Far more than any doctor has provided. I don't know where I would be without this info. So happy I can help!

 
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Old 08-24-2011, 05:55 PM   #70
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Re: New thyroid patient with questions??

Quote:
Originally Posted by Gemsrite View Post
Oh he did tell me that there is a possibility that the thyroid can be completely killed using RAI treatments. So my question is doesn't that mean meds forever? So why can't you try meds first?
Gem,

I second KB. I will go one up though. My family is thyroid autoimmune central station. My mom is one of eight surviving children, all five of the female children either have Hashimoto's, Graves, or Hashimoto's and Graves. Yes it is possible to have both. My own blood proved it to many a MD that disbelieved me. Hard to ignore lab results, but some MDs will.

I am the oldest daughter of the Oldest sister of five. I developed Hashi's and Graves during pregnancy with my son... ugh over 9 years ago. It took four years of fighting tooth and nail to get a group of MDs to work with me and treat me properly. One other female cousin has come up positive for Graves during her third pregnancy. So we have a crop of 7 family members to pool notes from and host family vent sessions. Those are scary and our men folk hide.

So let us go step by step here. I may have to post twice to give you the complete Graves treatment experiences of my family and the treatment plan we all finally have settled on for our future generations.

My mom was the first to test positive with Graves a precancerous nodule 5 cm x 4 cm on one side. Given the nodule and Graves and a wonderful family allergy to the Iodine dyes and RAI treatment. (If you are allergic to seafood get tested for a reaction before they inject that lovely stuff in your veins). They killed my mom and brought her back during her diagnostic RAI Uptake scan. She was contaminated and had to stay in the spare bedroom stripped bare except for a bed covered in plastic sheeting. We had to throw away the bedding and plastic and clothes she wore during the week after that lovely treatment. A RAI treatment regime was out for her. So the wonderful Endo decided to do a partial lobectomy. They surgically removed one half of her thyroid and sent her on her way. Never had her have a follow up or check her blood work ever again. Half an over active thyroid will support you like a full normal thyroid you know. WRONG! Untreated Graves can burn out a thyroid from over work. It often happens to many graves suffers that is why anti-thyroid meds should be tried first. Another neat fact about thyroids is they regenerate. My mom's missing thyroid half grew back bigger than ever in a ten year span of time and this time cancerous. Also antibody testing proved she had Graves and Hashimoto's. Versus just Graves as diagnosed by that bad Uptake scan. So back under the knife for her, two years past. I fought and found her an Endo that listens to me and does not shirk her treatment anymore. SHe is good on straight T4 supplementation.

Aunt Be, second oldest sister. Graves TD. She had an MD that only believed in an RAI treatment regime. She trusted and listened to him. She had her FIRST RAI followed by two weeks of isolation and lost work. Only to have her Graves rebound stronger than ever with a true thyroid storm. It seemed to just tick off her thyroid. So what was the solution? Less than a year after the first RAI, she had a second. Yep! This was before the MG family support and gain up on MDs network arose. Guess what? The RAI failed again. More issues hyperT/hypoT. Finally a suspicious biopsy convince the idiot Endo to request a thyroidectomy. It took three different Endo but she is finally optimal and steady on a mix of Synthroid and Armour.

Aunt Ba, Middle sister. Hashi-Graves, Graves dominant. Had one RAI that drove her hypoT, but didn't kill off her thyroid completely. This resulted in a five year attempt to medicate a hypoT Graves roller coaster. End result Thyroidectomy and T4-T3 supplementation regime.

Aunt R, sister #4. Hashimoto's suspected for a LONG time argued and argued but MDs refused to run the antibody tests. She kept having odd little thyroid storms. Not as common with pure Hashimoto's. MG family support and proof that Hashi's and Graves was dominant in our family. Final testing showed HEY she had Graves two and was living through a thyroid AI pitch battle. Those suck. MD said they would treat her when Hashi's had killed her thyroid off completely. Uh-Uh! It took a lot of ring around the Endo before finding an ENT that would remove it given a suspicious biopsy and enlarged size. She is on T4 only right now, but we are working on getting her some T3 as well.

Now for the non-Graves horror story. Aunt N. Youngest of five. She developed pure Graves.. no Hashi's tossed in for skitter and giggles. SHe got lucky and found a young female newly credited MD that had a hyperT mom. She got on anti-thyroid meds. She occasionally has to take 25 - 50 mcgs of T4 because her dosage is driving her more hypoT these days but she has been stable on meds after a 9 month adjustment period.

#6 Me. I had DOMINANT Hashimoto's with a chaser of Graves. It took five years, but my Hashimoto's obliterated my thyroid and now my Graves antibodies just sit and spin with nothing to do.. poor babies. GO HASHIMOTO's! I am optimal on 175 mcgs of T4. During my second pregnancy I had to add a grain of Armour on top of that to meet her demands and an inefficient conversion. Post breastfeeding it took 9 mo to stabilize again.

#7 Cousin S. She is just beginning ATD treatment with her mom's MD. She is Aunt N's daughter. They are doing well right now.

So what was our take on things. RAI's? FORGET ABOUT IT! Give ATD's a years worth of try to stabilize things. If the ATDs do not seem to help then yank the sucker out. It has been easier for us to medicate and stabilize with out a thyroid or with a dead and atrophied lump of tissue than with a misbehaving lump full of surprises. That is just our personal opinion. But CAREFULLY research the side effects of RAI. If more people were educated about it less might be willing to do it. Me? I inherited that iodine dye and treatment allergy. It really is aweful to be injected and react to it. Yeah! I had a MD tell me that you can not be allergic to Iodine. True. But the dye and compound they inject you with is not ~PURE iodine. Thus allergic reactions do occur.

Well that is my families story with Graves with a little Hashi's tossed in for flavor. Hope it helps.

Sincerely,
MG
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Old 08-24-2011, 06:03 PM   #71
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Re: New thyroid patient with questions??

Quote:
Originally Posted by Gemsrite View Post
Can I just say once again that you guys are awesome! I'm at the beginning of the battle that you guys have already faced and are kind enough to share your experience and wisdom
Your welcome. I am glad I could help. My wisdom is to be questioned. I only had one wisdom tooth develop and I had to have that one cut out. ;-) I hope that we can continue to help save your some of the suffering and issues we had. It kinda makes our trials and tribulations have a purpose.

Sincerely,
MG
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Old 08-24-2011, 06:34 PM   #72
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Question Re: New thyroid patient with questions??

Quote:
Originally Posted by mkgbrook View Post
So what was our take on things. RAI's? FORGET ABOUT IT! Give ATD's a years worth of try to stabilize things. If the ATDs do not seem to help then yank the sucker out. It has been easier for us to medicate and stabilize with out a thyroid or with a dead and atrophied lump of tissue than with a misbehaving lump full of surprises. That is just our personal opinion. But CAREFULLY research the side effects of RAI. If more people were educated about it less might be willing to do it. Me? I inherited that iodine dye and treatment allergy. It really is aweful to be injected and react to it. Yeah! I had a MD tell me that you can not be allergic to Iodine. True. But the dye and compound they inject you with is not ~PURE iodine. Thus allergic reactions do occur.

Well that is my families story with Graves with a little Hashi's tossed in for flavor. Hope it helps.

Sincerely,
MG
Wow all I can say us just wow!!!
Ok I'm not sure if I've asked you this already but at the risk of redundancy I'll ask again. How do you feel about the small dose of RAI for the uptake and scan? Should I keep the appt my old MD set up for that or nix that and look to the future with new, hopefully awesome dr * crosses fingers*

So... This I'd my plan of action for tomorrows dr visit. Take labs that I already have and request antibodies panel. Get some type of meds on board and let dr know right off that I'm not ok with RAI treatments so we won't be a good dr patient fit if that's his normal plan of action.

Any suggestions/revisions to aforesaid plan would be greatly appreciated and most definitely followed. Bless you for all the help so far and I hope I'm not repeating the same questions too much. My brain doesn't work the same here lately and tonight I've got some new symptoms I'm dizzy off and on, kinda feel like I'm coming in in waves if that makes sense, and I'm nauseous off and on. Appetite isn't wonderful either but that could be stress, nausea, so many things lol.

 
Old 08-24-2011, 06:40 PM   #73
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Re: New thyroid patient with questions??

Quote:
Originally Posted by mkgbrook View Post
Your welcome. I am glad I could help. My wisdom is to be questioned. I only had one wisdom tooth develop and I had to have that one cut out. ;-) I hope that we can continue to help save your some of the suffering and issues we had. It kinda makes our trials and tribulations have a purpose.

Sincerely,
MG
That's too funny!! I only had two wisdoms that I had cut out also! Dentist said I was ahead of the evolutionary chain because I was born without the other two lol! I guess great minds grow teeth alike too hahaha!!

 
Old 08-24-2011, 07:13 PM   #74
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Re: New thyroid patient with questions??

Quote:
Originally Posted by Gemsrite View Post
Wow all I can say us just wow!!!
Ok I'm not sure if I've asked you this already but at the risk of redundancy I'll ask again. How do you feel about the small dose of RAI for the uptake and scan? Should I keep the appt my old MD set up for that or nix that and look to the future with new, hopefully awesome dr * crosses fingers*

So... This I'd my plan of action for tomorrows dr visit. Take labs that I already have and request antibodies panel. Get some type of meds on board and let dr know right off that I'm not ok with RAI treatments so we won't be a good dr patient fit if that's his normal plan of action.

Any suggestions/revisions to aforesaid plan would be greatly appreciated and most definitely followed. Bless you for all the help so far and I hope I'm not repeating the same questions too much. My brain doesn't work the same here lately and tonight I've got some new symptoms I'm dizzy off and on, kinda feel like I'm coming in in waves if that makes sense, and I'm nauseous off and on. Appetite isn't wonderful either but that could be stress, nausea, so many things lol.
An RAI Uptake is alright and can confirm Graves positively with out ATD in your system.

I have an issue with it due to allergic responses and having young kids to take care of.. I can not take my self out of the daily care regime for my kids. If you have a mom or friend that can step in and assist your family while you isolate yourself then go for it. But I would only do it if the antibody blood test is questionable.

It is not necessary if you already have positive Graves via antibody detection. So personally I have nothing against it, if you have a negative antibody test. There is a 30 % chance of a false negative with the Graves antibodies test. They are not as accurate as Hashimoto's. But if your blood shows Graves, start ATDs and screw messing with putting radioactive isotopes in your body and sluffing them of in your sweat and other bodily fluids.

This is just my opinion. I think the RAI Uptake scheduling was rushed. The MD should have run a complete antibody panel first.

Sincerely,
MG
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Old 08-24-2011, 08:01 PM   #75
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Re: New thyroid patient with questions??

Thanks for the insight. I really don't have anyone that could take my kiddos full time and to be honest I'd like to avoid putting that stuff in my body unless it absolutely necessary and at this point I don't feel that it is just yet. Have a great night and I'll let you guys know how it goes tomorrow.

 
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