[huntwork]

in reply to: Very frustrating and need some serious help #1063925

Thank you, Ladies sooo much!! And Kimberly, you are correct. I just read in an Endo textbook (I do a TON of research) the very same thing that you said, it CAN still be Graves as the antibodies are diffused and called CIC and can hide…unfortunately no iodine test can be done because they removed the entire thyroid already. I have contacted my surgeron and he has been informed of the problem and he said he would talk to some of his endo collegues as to who would be the best for me. I appreciate his time and your time for putting up those sites. My D.O. doesn’t understand that right now, my labs WILL look "Hyper" because I have no thyroid at all. The TSH WILL be low. (but she didn’t do the extensive testing, just some regular tests that most PCP’s usually do) the "specialist" I saw said that no labs will be an accurate reflection of what is going on with my hormone levels right now since surgery was so soon. (August 10th) She said she wasn’t going to even pay attention to them. When I got the test results: TSH was at .02 (very normal for having no thyroid from what I understand.) Free T4 was 1.2 (Within normal limits) but my Total T3 was 216 (elevated) I am on other meds that can affect that (which I am weaning off of) so, basically, I will be getting to an Endo who specializes in "Hard to find" Graves cases.

I thank you all for letting me "rant" and ask questions. I know no one is a doctor for this, but I really do appreciate the help from those who have experienced similar problems. Why is the endo field so weird? Well, I guess that can be said for a lot of medical fields. LOL!!

Thank you again. ” title=”Smile” /> And I look forward to participating and letting you all know what happens!!

I took my daughter (9) to a "Ped Endo"….let’s just say he was EXTREMELY wet behind the ears and had not a clue as to what was going on..needless to say, we are being referred to another Ped Endo by my SAME surgeon who does have experience with this kind of thing in children too. Both girls are expressing Graves symptoms. Hopefully, they can catch it in time and not go through all I have!!

Okay!! Thank you all so much!! I appreciate the help, the shoulder and the advice. It all really does make one feel not so alone and like I’m going crazy!!!

[huntwork]

in reply to: Very frustrating and need some serious help #1063922

Oh, BTW; the iodine suppliments were way before original diagnosis of Graves, and I stopped them totally before all that. This was a long time prior to all THIS mess. Then a hospitial ER did a radioactive Iodine CAT scan (when I had a cyst rupture, I also have ovarian cysts, uterine issues, Insulin resistant, Iron def. anemia, had frequent infections that would never go away, like on antibiotics 10-15 times in ONE year) and that concentrated in my thyroid (obviously). It’s a mess.

[huntwork]

in reply to: Very frustrating and need some serious help #1063921

Thank you, Harpy. I sorta knew all this already. And yeah, I DEFINITELY have had all signs of Graves" ( heart palps/anxiety/panic for no reason/ going hyper/hypo all my life/severe joint pain/Eye problems like night blindness/one eye larger than the other, swelling in my eyes, eye pain frequently, bilateral goiter, 2 small nodules (less than 5mm each), swelling of my hands and front of calves/feet. High BP, High heart rate at times, definite mood/thinking issues. My eyes are gritty, painful, red, swollen etc. have a LOW heart rate at rest (lower than 52) then suddenly it would jump to 120 bpm and I was waking up out of a dead sleep with heart palps, feeling strange then at times, I would be checked (like in December) and I was Hypo with the depression, skin dryness/flakiness, my hair is dry as straw and falling out, I can’t stand heat or when hypo I can’t stand cold. ONE endocrinologist I saw before all this said in Jan of 09 "You’re thyroid is actually BETTER than mine" this after being diagnosed as HYPO by my then PCP (have since changed)in Dec of 08 and put me on ONLY Cytomel to which I completely freaked out with anxiety and you could have peeled me off a ceiling, this is why I switched all doctors ….the WHOLE nine-yards. My eyes can suddenly go double, they are stiff, I obviously have no thyroid anymore because I FOLLOWED THE STINKIN’ ADVICE TELLING ME THIS!! And here I am. What the heck is WRONG? MY new integrative D.O. put me on iodine suppliments..which made things much, much worse and I went off of them, she checked me in Dec of 09 and I was hypo, then she checked me again in Jan of 10, and yep, you guessed it, I was Hyper again. I follow a pattern, I have severe swelling of extremities, my eyes are swollen right now and painful. The left is bigger than the right and I have severe pressure. I DO HAVE GRAVES. (all these anti inflammatory suppliments CAN hide the antibodies, especially Transfer Factor, which is Cow’s Colostrum..according to my D.O. I need this to help my body with the autoimmune disorder) I am so frustrated and in pain I can’t see straight. What do I do?!?! Just say "Okay," ignore it, and DIE from all this mess? That’s what it feels like they’re telling me!!!

[huntwork]

in reply to: joint pain #1064002

From what I have learned from my Endo/PCP and various medical texts: It could still be related to being Hyper. If your thyroid isn’t controlled yet. I would ask your doctor and give the med a chance to work (it takes like a month or more for some med changes to actually work!!) Definitely talk with your doctor. I’m just speaking from experience, not giving medical advice!! ” title=”Smile” />

[huntwork]

in reply to: antianxiety drugs #1064047

Hi! I’m new, saw this topic and new I had to post. I speak from experience only.

I was diagnosed 13 years ago with Bipolar Disorder…no thyroid checks, no considerations to my family history (ALL of the women in my family have thyroid disease of some sort) after years of being put on ALL imaginable psychiatric meds and experiencing no relief (yes, even Lithium) and FINALLY getting the right diagnosis…I want those years back!! I had surgery to remove my thyroid…it had gotten that bad that I had nodules, bilateral goiter (severe) and severe hypo/hyper (which mimics Bipolar Disorder)…in bed for almost a year. My choice was to have the victim removed because it was dying. Now, I am trying to wean off Lexapro and Klonopin (Lex is down to less than 5mg/day and Klonopin went from 4.5 mg/day to 2.25mg/day) The Lexapro is interacting horribly with my Armour Thyroid med (I do take them 4 hours apart) and causing severe "Hypomanic" symptoms…it’s not BP it’s a drug interaction. Which doctors NEED to be aware of and make patients aware of. I have worked in the med field. I don’t trust a whole lot of doctors, but I do trust the team I have now. And I wound up in the ER when my psych doc. tried to get me off Lexapro rapidly (Like in 3 days) my other doc’s were concerned I was having withdrawal-induced seizure/stroke. I stopped reducing the Klonopin (longer acting benzo and much safer according to psych doc’s than Xanax, which is 2 molecules away from Whiskey, thus the addictive nature of it). Eventually, once I am off the Lexapro, (in like several months) I will start going off the Klonopin. I can’t WAIT to be completely rid of these unnecessary for me drugs.

Mine is a cautionary tale: If it doesn’t feel right to you, QUESTION! QUESTION! QUESTION!

[huntwork]

in reply to: Applying for Disability+ Trying to Survive= Possible Denial? #1063997

All I can do is offer you my hugs and support. It sounds pretty bad. I would keep contacting SSI I guess. You should be able to have another doctor assigned to your case. I receive SSDI for another condition, but will have GD added when I come up for review again. I understand your frustration and anger. I’d feel the same. My best thought is to try and have your case reassigned? You may have already done that, I don’t know. But at the very least, try to find a different lawyer to help you. I have a relative with Fibromyalgia who has a lawyer who told her (no kids and not married) that she would be eligible for SSDI if she needed it. IF she is eligible, it sounds like you should be as well. Also, have you thought about contacting the ACLU? They work usually pro bono and they could help you. Just some thoughts. I feel for you. If you need anything let me know!

[Author]

Posts