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This Is My Whole Story Someone Please Help

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Old 12-04-2006, 07:38 AM   #1
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Arrow This Is My Whole Story Someone Please Help

Sorry to make you guys read so much but i'm still so confused so i'm gonna tell my whole story and hopefully someone will be able to help (niki)
in 1999 my gyno found a nodule, sent me to an endo and had an uptake scan they said it was plummers disese and put me on medicine( i don't remember what kind)this was in the middle of planning my wedding so i did'nt think it was a big deal, fast forward 2005 i feel a lump in my neck and my gp sends me for a sono and uptake scan. and basic bloodwork, scan comes back hot and bloodwork hyper so off to endo i go. he looks at scans and says go to this surgeon and have it taken out. end of story no bloodwork, no nothing just get it taken out. ok, i was not having any symptons that i could relate to my thyroid and already was trying to get my insurance company to agree to a breast reduction(my mom had just finished her chemo for breast cancer)
so i put it on the back burner.
Sept 06 i go to a new gp cause i swear iam having a nervous breakdown, she sends me for basic bloodwork comes back hyper i already have an appt with endo (cause i've now have done some research and realize that alot of my symptons could be from my thyroid. ) new endo looks at scans from '05 and does sono in office says right nodule has grown to 5cm and i should have rai, i saw her on a thursday, she sends me to hospital for new uptake scan so she can order rai, tells me by the end of next week it will all be done. needless to say i don't get an appt for two weeks another week goes by before i hear from her and she tells me come by the office tomm pick up the prescription and bring to hosp they will order it and i can take it friday afternoon since it only take 24 hours to get.well that hospital doesn't do rai and they are 100% sure it can't be done in 24 hrs(please note this endo had me taken off all my antideppressants cause this would be taken care of in a week or two) so now off all meds for awhile i am having a nervous breakdown.
i go back to my gp and insist on a fna and a full bloodworkup and a new endo
she sends me for all and gets me into the endo office the next day,(side note after i had the uptake scan i had really really bad diarrea for two weeks and lost 16 lbs though iam hyper i never lose weight and was pretty much overweight- i think it was from the radiation) so my new endo who is supposed to be great looks at scans from '05 and measures my thyroid with a tape and orders rai. he orders 16 where as the other endo started with 9.5 but when i got my script it was for 12 anyway i get my fna on wed morning i'm home by noon thurs night my gp calls and says that fna came back fine and she talked to the endo and agrees with the rai treatment.(another side note tues night the lab calls and says i will only be having the sono cause i wasn't scheduled for enough time for the fna, i go into the office and again they tell me i'm only having the sono, have the sono next thing i know they are pulling out needles for a fna???what the, also has anybody ever have a biopsy result come back that fast???)these are my bloodwork results:

T4, Free 1.9 range .8-1.8ng/dl
T4, Total 15.6 range 4.5-12ug/dl
t3 uptake 32.1 range 22.0-35.0%
T4 calculated 5.01 range1.53- 3.85 units
T3 total 324 range 60-181ng/dl

TSI 102 range <=125% baseline
i can't find anything on this paper work for a TSH test

My symptons:
i have what looks like veritligo on my arms with a rash that lasted over a year the itching is gone but the veritilgo is still there i got it after i had a baby bout 2 1/2 years ago
weight gain
enormous appetite

i know this is like the longest thread ever but i have no idea what i should do
chances are the medicine they gave me back in 99 was ant******** and it made me sick which is why i stopped taking it, i think i might have had a bad reacation to the radiation already at a low level and who really want's surgery?
i have absoultly no idea what to do.
any help please
thanks jenn

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Old 12-04-2006, 10:31 AM   #2
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Barbara_Ann HB UserBarbara_Ann HB User
Re: This Is My Whole Story Someone Please Help


I didn't read through your whole post - too much there (little overwhelming).

Not quite sure what your question is.

Just from what I can gather your doctor is comfortable that your thryroid problem is addressed and treated properly.

Sounds to me like you have some severe anxiety and panic going on. You should go over on the Anxiety or Panic boards and read and ask questions.

When you post try to condense it down as much as possible. More people are likely to read and reply.

Old 12-04-2006, 11:12 AM   #3
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Re: This Is My Whole Story Someone Please Help

hi this whole thyroid thing is very scarey plus you get anxiety with it to top it off, um i think they could have kept you more informed and its made you frightened is this what you mean your message is like mine when im really hyperr i cant tell everyone enough imfo and i ask a million qeustions maybe it makes there heads spin a little lol bpost back love from katxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx xxxxxxxxxxxxxxxxxxxx

Old 12-04-2006, 12:01 PM   #4
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Re: This Is My Whole Story Someone Please Help

I hope Nikki will be here shortly to calm you down some, Jenn. Take some deep, slow breaths. You can do this.

Remember, we are only lay people like you here. We can't diagnose, we can't tell you what treatment to take. We can only give you guidance about what your options really are... not only the single one that is easiest for you doctor to do. Go back to your other threads and reread what Nikki told you about the RAI... that it's the fastest but not least complicated option... That there are bad side effects to it... and that you might want to give anti-thyroid drugs a try first. They may well be what you tried in 1999, but it's hard to know from this distance.

For what my opinion is worth, it sounds like you were misdiagnosed with Plummer's disease; Plummer's does not appear with TSI antibodies and doesn't respond well to anti-thyroid drugs. Only Graves' disease has TSI antibodies, which you definitely have. Graves' does respond well to ATDs. If that's the med you tried and got sick from, it could well be it wasn't properly dosed. Also, there are two distinctly different ATDs; if you couldn't take the one, you might be able to take the other.

I'm very aware of the mania that thyroid can cause; I've had a form of it. I know how hard it can be to think straight, but you have to try. Maybe you have a trusted friend or loved one who can help you wade through all this information, who knows you well enough to help make the important decision?

Just don't rush, Jenn.

Old 12-04-2006, 02:18 PM   #5
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Re: This Is My Whole Story Someone Please Help


First I want to say - Please calm down...You are quite hyper just from reading your post without even looking at your labs. I can tell just by what you've written. I can also tell you are panicked and scared. Regardless of what you do it will be o.k.

I couldn't really tell from your post if you went ahead and had the RAI??? I don't think you did but I am not sure.

If you are asking me to help you with a decision...well I can't do that. Midwest was right. I am only a lay person, but I have gone exactly what you have been through with the hot nodules, questions of a graves diagnosis, and what to do???

The good thing is the "nervous breakdown" you are having is your hyperthyroidism. Your FT4 is high enough to make you feel that way. I have been there.

I think you are being surrounded by everyone who is telling you just to go ahead and do the RAI because it will be a quick fix and you will be done with Graves disease. This is a lie....Plain and simple!!!! RAI will not treat your graves disease it will only kill your thyroid which is a symptom. I also don't think your dr.s are working very well with you as they are just pushing this on you. It doesn't sound to me like your are being given any other options by them. I have already posted the horrors of RAI to you so I really don't want to type it again. You can go back through the archives (actually when I am done typing this I will for you and pull some old posts up for you to reread)


I also don't think that you have given anti-thyroid meds a fair chance. There are plenty out there to try. For some PTU does not work and tapozole does or vice versa. Anti-thyroid meds WILL treat your graves disease. This is the option that will. You can put Graves Disease into remission for many years...Living drug free, symptom free, and feeling normalcy. But you also HAVE to be willing to take the plunge and watch your diet (no MSG or iodine).....You have to be willing to start educating yourself (purchase thyroid for dummies and graves disease a practical guide). Getting labs every 4-6 weeks. Finding a dr. who will listen to you and let you stay on anti-thyroid meds until remission is reached. Yes it is alot to learn but no one will be able to take charge of this but you!!!! And you have a really GREAT chance of reaching remission because your graves is Mild.....

When I was in your position the horrors of RAI that I was reading about were enough to scare the b-jesus outta me to want to not do it. I have NO REGRETS about the road I have choosen and would do it the same all over again.

I cannot tell you what to do. I can only answer questions and share my experience with you. I hope this thread has sunk in although I know the hyperT brain is not thinking clearly. You do need to be back on some anit-thyroid meds ASAP!!!

DX. Toxic Multinodular Goiter (now growing rapidly) & Hyperthyroid from autoimmune Graves Disease

Old 12-04-2006, 02:37 PM   #6
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Re: This Is My Whole Story Someone Please Help

O.K. Jenn I went through and did a search and pulled on of my old posts and the last post I answered to you. Read them both....Please????

DX. Toxic Multinodular Goiter (now growing rapidly) & Hyperthyroid from autoimmune Graves Disease

Old 12-04-2006, 03:53 PM   #7
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Re: This Is My Whole Story Someone Please Help


Absolutely do not feel bad about the long post. The manic periods are sometimes so intense that once you start something, you just can't stop. Be thankful I didn't post "My Story" - it printed out to 8 pages but it also covered 25 years. Wasn't sure what to do with it so I went ahead and mailed it off to the greivance coordinator at the insurance company and then to the endo that they finally got me an appointment with on March 5, 2007. They're probably getting a good laugh out of it but it sure felt good.

I'm in "manic mode" now so I really need to force myself to stop or this will end up as long as yours. Just remember that you are not alone. A lot of us have been thru the same thing, in our own individual ways, and managed to survive.

Take care of yourself,

Old 12-04-2006, 05:45 PM   #8
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Barbara_Ann HB UserBarbara_Ann HB User
Re: This Is My Whole Story Someone Please Help

Hello Again Jenn17;

Just got time to come back and check the board and see how you were.

So glad to see you have several responses from people that seem to be familiar with your situation.

That anxiety and panic does not help matters and definetly is part of the thyroid platter.

Do try to go over and read the anxiety board some - there are some very helpful posts and people on that board. May be of some comfort to you as you get through this.

I have hypothyroidism - I hope you have medication for your anxiety.

Good luck hun - hope you are feeling better tonight.

Old 12-05-2006, 05:02 PM   #9
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Re: This Is My Whole Story Someone Please Help

Jenn- Where are you??? I came back to check on this post and you haven't responded. I am concerned.

DX. Toxic Multinodular Goiter (now growing rapidly) & Hyperthyroid from autoimmune Graves Disease

Old 12-05-2006, 10:20 PM   #10
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Re: This Is My Whole Story Someone Please Help

You are doing the right thing by gettng advice from members of HealthBoard. My daughter was diagnosed w/Graves Disease at age 15 and it sounds like that is what you have. She was nervous, shaky, ate like a horse and kept losing weight. She always had a tough time around the time of her period and have diahrea, vomit and fever. I must have taken her to the doctor 9 times trying to find out what was wrong with her. It was on a Thanksgiving holiday that she was so sick that I took her to the ER and a Nurse noticed she had a goiter and I believe she is the one that made the actual diagnosis. At that time she drank RAI in the hospital and came home. A second time was needed after so many months to completely kill the thyroid. If this is what you have you are going to be a hyper, anxious person. I sure hope you can find a doctor to treat you who knows what is going on. An endocrinologist should be able to give you the tests you need and give you a diagnosis. I wish you the best.

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