# I don't understand what the hold up is on my diagnosis!!!



## charliehorse (Oct 29, 2011)

So yes 9/20 my tsh is .006..hormones say postmenopausal. I'm 33.mentral issues for 4 years as well as having other issues. Get referred to endo. Endo does ultrasound and never tells me anything about it and does TONS of lab. Never tells me anything. 5 doctors work on trying to get labs from her so that they can see why I'm falling apart and so sick. Nothing....except 1 sheet that shows I;m positive for TPO, TRab, TSI, and an extremely high antithyroglobulin ab level. Doing my research...it seems I must have some autoimmune disease like Graves especially since most of my symptoms match. Return to the endo. She says nothing about being positive for anitbodies. When the NP in the office made a comment about the high antithyroglobulin she said" I've seen it in the thousandths"...like it was nothing. Didn't mention my t3 or t4 but my TSH that lab date on 10/17 was .07, still very low. So she says I must have some thyroiditis that is clearing up. Nothing shows this at all. Even if my t3 and t4 were normal, you cannot write off the fact that I could have graves. This article was one of the many I've read and this is a quote n addition to the clinical examination, various tests are usually conducted. Hyperthyroidism can usually be confirmed by use of the TSH, T4 (or Free T4), T3 (or Free T3) and Radioactive Iodine Uptake (RAI-U) tests. In hyperthyroidism, test results would be as follows:

"TSH Test -- usually low to undetectable. (Note: The low end of the TSH range is controversial. The new, recommended low is 0.3, but many doctors and most labs are still using the older, outdated bottom range number of 0.5.)
T4/Free T4 Test -- Normal to High
T3/Free T3 Test -- Normal to High
Radioactive Iodine Uptake (RAI-U) -- elevated."

In a radioactive iodine uptake (RAI-U) test, a small dose of radioactive iodine 123 is administered as a pill. Several hours later, the amount of iodine in your system is measured, accompanied by an x-ray. An overactive thyroid will typically have elevated RAI-U results -- the overactive gland usually takes up higher amounts of iodine than normal, and that uptake is visible in the x-ray. A thyroid that takes up iodine is considered "hot" -- or overactive, versus a cold or underactive thyroid. In Graves', RAI-U is elevated and you can see that the entire gland becomes hot. If you have thyroid nodules, RAI-U can show them and whether they are hot. If you are hyperthyroid due to a hot nodule, and not Graves' disease, the nodule will show up as hot, and the rest of your thyroid will be cold. Hot nodules may overproduce thyroid hormone but they are rarely cancerous. In someone with hyperthyroidism, the RAI-U would typically be normal only if hyperthyroidism is due to a pituitary tumor, or taking too much thyroid medication.
Graves' disease can be diagnosed using Thyroid Receptor Antibodies (TRAb) / Thyroid-Stimulating Immunoglobulins (TSI). The presence of TRAb/TSI test can confirm Graves' disease, and while experts can't agree, it's thought that from 75 to 95 percent of all Graves' patients will test positive for these antibodies. Practitioners do agree, however, that the presence of TRAb/TSI is considered diagnostic for Graves' disease. (Note: some patients with Graves' disease do not test positive for these antibodies.)

My Uptake scan was increase with no hot spots. The entire glad shows up a perfect shape. 
And with her saying it was thyroiditis clearing up according to this article as several others http://www.webmd.com/a-to-z-guides/radioactive-iodine-uptake-test?page=2
The test shows either more or less uptake of tracer than normal in the thyroid gland. The uptake may be even or uneven. If hyperthyroidism is present, abnormal test results may mean certain conditions are present.

*A low uptake of tracer by the thyroid gland may mean that hyperthyroidism is caused by inflammation of the thyroid gland (thyroiditis)*, taking too much thyroid medicine, or another rare condition.
*A high uptake of tracer spread evenly in the thyroid gland may mean that hyperthyroidism is caused by conditions such as Graves' disease.*
An uneven spread of tracer in the thyroid gland (with either low or high areas of uptake) may mean that hyperthyroidism is caused by a multinodular goiter or a noncancerous (benign) tumor called a toxic adenoma.



So based on all my searching, studing, research, and the help of all you all on here, I'm willing to be I've got Graves diease. But...why is this SSSOOOOO hard for any doctor to see. I am getting a second opinion on 12/30 which is so far away..especially when I'm not getting the treatment I need. I'm a wreck! 
Oh..and it's amazing how they have me on klonopin and well the major side effects are 
confusion, hallucinations, unusual thoughts or behavior;
hyperactivity, agitation, hostility;
unusual or involuntary eye movements;
weak or shallow breathing;
depressed mood, thoughts of suicide or hurting yourself;
So I didn't take it yesterday. Guess what. Had a seizure last night....just like 2 weeks ago. Typical when just stopping taking it. Geesh....had I known all this I would have refused to take it.
I'm already a frickin mess and now knowing klonopin is prolly making it worse... ... And they call themselves DOCTORS! They are killers....


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## Andros (Aug 26, 2009)

charliehorse said:


> So yes 9/20 my tsh is .006..hormones say postmenopausal. I'm 33.mentral issues for 4 years as well as having other issues. Get referred to endo. Endo does ultrasound and never tells me anything about it and does TONS of lab. Never tells me anything. 5 doctors work on trying to get labs from her so that they can see why I'm falling apart and so sick. Nothing....except 1 sheet that shows I;m positive for TPO, TRab, TSI, and an extremely high antithyroglobulin ab level. Doing my research...it seems I must have some autoimmune disease like Graves especially since most of my symptoms match. Return to the endo. She says nothing about being positive for anitbodies. When the NP in the office made a comment about the high antithyroglobulin she said" I've seen it in the thousandths"...like it was nothing. Didn't mention my t3 or t4 but my TSH that lab date on 10/17 was .07, still very low. So she says I must have some thyroiditis that is clearing up. Nothing shows this at all. Even if my t3 and t4 were normal, you cannot write off the fact that I could have graves. This article was one of the many I've read and this is a quote n addition to the clinical examination, various tests are usually conducted. Hyperthyroidism can usually be confirmed by use of the TSH, T4 (or Free T4), T3 (or Free T3) and Radioactive Iodine Uptake (RAI-U) tests. In hyperthyroidism, test results would be as follows:
> 
> "TSH Test -- usually low to undetectable. (Note: The low end of the TSH range is controversial. The new, recommended low is 0.3, but many doctors and most labs are still using the older, outdated bottom range number of 0.5.)
> T4/Free T4 Test -- Normal to High
> ...


I could not agree more!!! I wish I was there to help you; I really do. All of us here wish that!

One thing I will say, it takes getting angry to get something done. It is horrible to have to advocate for one's self when that are so ill and the doctors keep on dismissing the patient. The big fluff off!

Do you think the seizure was from the Klonopin? When I was right where you are at being constantly dismissed by a myriad of docrors, I was having myoclonic seizures. I was not on any medicine.

You are in advanced stage of hyper. I am soooooooooooooooooo worried for you!

For that reason, I want you to familiarize yourself with these symptoms just in case.

Thyroid storm symptoms

What are the symptoms of thyroid storm?

•High fever of 100 to as high as 106 
•A high heart rate that can be as high as 200 beats per minute 
•Palpitations, chest pain, shortness of breath 
•High blood pressure 
•Confusion, delirium and even psychosis 
•Extreme weakness and fatigue 
•Extreme restlessness, nervousness, mood swings 
•Exaggerated reflexes 
•Difficulty breathing 
•Nausea, vomiting, diarrhea 
•Recent dramatic weight loss may have taken place recently 
•Profuse sweating, dehydration 
•Stupor or coma

http://thyroid.about.com/od/hyperthyroidismgraves/a/thyroidstorm.htm

http://www.emedicinehealth.com/thyroid_storm/page3_em.htm

This is the only thing I hate about being a cyber-friend; you just can't be there when needed.

Really upset here and I know you are! It's all deja vu to me; I nearly died from a thyroid storm which was totally unnecessary.


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## Andros (Aug 26, 2009)

charliehorse said:


> So yes 9/20 my tsh is .006..hormones say postmenopausal. I'm 33.mentral issues for 4 years as well as having other issues. Get referred to endo. Endo does ultrasound and never tells me anything about it and does TONS of lab. Never tells me anything. 5 doctors work on trying to get labs from her so that they can see why I'm falling apart and so sick. Nothing....except 1 sheet that shows I;m positive for TPO, TRab, TSI, and an extremely high antithyroglobulin ab level. Doing my research...it seems I must have some autoimmune disease like Graves especially since most of my symptoms match. Return to the endo. She says nothing about being positive for anitbodies. When the NP in the office made a comment about the high antithyroglobulin she said" I've seen it in the thousandths"...like it was nothing. Didn't mention my t3 or t4 but my TSH that lab date on 10/17 was .07, still very low. So she says I must have some thyroiditis that is clearing up. Nothing shows this at all. Even if my t3 and t4 were normal, you cannot write off the fact that I could have graves. This article was one of the many I've read and this is a quote n addition to the clinical examination, various tests are usually conducted. Hyperthyroidism can usually be confirmed by use of the TSH, T4 (or Free T4), T3 (or Free T3) and Radioactive Iodine Uptake (RAI-U) tests. In hyperthyroidism, test results would be as follows:
> 
> "TSH Test -- usually low to undetectable. (Note: The low end of the TSH range is controversial. The new, recommended low is 0.3, but many doctors and most labs are still using the older, outdated bottom range number of 0.5.)
> T4/Free T4 Test -- Normal to High
> ...


You know what I think? I think you should print this out and send it to every doctor you have been to. I really mean that. You have to get somebody's attention. I would even send it to your local AMA board. I am not kidding. This is ridiculous!

And your insurance company? A copy to them also. explode


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## charliehorse (Oct 29, 2011)

Andros said:


> I could not agree more!!! I wish I was there to help you; I really do. All of us here wish that!
> 
> One thing I will say, it takes getting angry to get something done. It is horrible to have to advocate for one's self when that are so ill and the doctors keep on dismissing the patient. The big fluff off!
> 
> ...


Andros... Thats what I though I was having last night but I've had other kind of seizures for years but they have pretty much stopped until 2 weeks ago I had this one like last night that was very different from the rest. It really scared me! The one's before didn't so much scare me bc I knew pretty much it would run its course and I'd be very tired. The one like last night, I thought I was going to die! My teeth wouldn't quit chattering, body tensed up and shaking and my head hurt so bad...and I remember being very very thirsty. My husband just tucked me in, prayed and shut the door. I'm just praying that God will help my body last and find some doctor who can help me. I'm holding on! I got a good support team here! 

and to 


Andros said:


> You know what I think? I think you should print this out and send it to every doctor you have been to. I really mean that. You have to get somebody's attention. I would even send it to your local AMA board. I am not kidding. This is ridiculous!
> And your insurance company? A copy to them also.


This I might just do...stir it up a bit and get someone to help figure out why a patient is being grossly neglected.


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## webster2 (May 19, 2011)

Wow, I am really worried for you. You certainly are not getting any treatment. Please let your family members know about thyroid storm and symptoms. I am not sure where you live but on the National Graves disease Foundation page there is a section to locate a doctor in your area. It doesn't work for everywhere, none we noted in my state.

I do think Andros is correct, you need to let your insurance company know. I will keep you in my prayers.


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## charliehorse (Oct 29, 2011)

Thank you webster2. The more prayers the better. I sent an email to bluecross, the same letter to AMA and forwarded the email to the National Graves foundation to see if they could help in anyway.


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## webster2 (May 19, 2011)

charliehorse said:


> Thank you webster2. The more prayers the better. I sent an email to bluecross, the same letter to AMA and forwarded the email to the National Graves foundation to see if they could help in anyway.


Good for you! It is really hard to be an advocate for yourself when you are really sick. I am so sorry you have to do this. Hopefully, it will pay off quickly. Please make sure you alert you family about thyroid storm. It is awful and pretty much a life threatening event. I will continue to keep you in my prayers. :hugs:


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## Octavia (Aug 1, 2011)

You should ask your insurance company for a case manager to work with. Those are generally nurses who help patients navigate the system, and they can advocate for you as well.


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## charliehorse (Oct 29, 2011)

oh...copy of my 10/17/11 tsh with free t3 and t4...
tsh .07 norms .34-5.6
frt4 .83 norms .61-1.12
ft3 2.8 norms 2.5-3.9

now...wonder what it would have been when tsh was .006...????

on a better note!!!! I am allergic to versaid which is a benzodiazepine drug...clearly marked on my chart at the endos office...plus I see it on the top sheet of the copy of paperwork they sent my gp. Says clear as day in big bold letters *benzodiazepine * allergy. right under neath it...says the doctor has prescribed klonopin which is a benzodiazepine 3 times a day. now...versaid and xanax have a paradoxial effect on me. they make me nuts and full of rage. NO WONDER I'VE BEEN SO FRICKIN CRAZY THESE PAST 2 MONTHS!!!

and she says my tsii and trab and anti tpo were negative...??? wouldn't that mean they wouldn't have shown up in my system if they were negative? but they did ..no matter how low..??


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## Andros (Aug 26, 2009)

charliehorse said:


> oh...copy of my 10/17/11 tsh with free t3 and t4...
> tsh .07 norms .34-5.6
> frt4 .83 norms .61-1.12
> ft3 2.8 norms 2.5-3.9
> ...


Yes; it is my contention that negative for these purposes means zero. They should either say, "TSI is within the range given by your lab or below the range."

But the really sad part is that doctors don't know that the healthy patient should not have "any" TSI, Thyroglobulin Ab or TPO Ab. That is just too scary.


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## charliehorse (Oct 29, 2011)

Andros said:


> Yes; it is my contention that negative for these purposes means zero. They should either say, "TSI is within the range given by your lab or below the range."
> 
> But the really sad part is that doctors don't know that the healthy patient should not have "any" TSI, Thyroglobulin Ab or TPO Ab. That is just too scary.


even crazier part is right below my drug allergies that is big and bold states *benzodiazepine* .... the first treament she has is klonopon (benzodiazepine ) 3 x daily. No wonder I've been mess worse than before the diagnosis. They've given me something I'm very allergic to and have the opposite effect of me...makes me crazy and suicidal! But you can't just stop taking it bc it could kill you...so I'm stuck with taking it slowly weening myself off of it. Like I said...they aren't doctors...they are killers!


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## Andros (Aug 26, 2009)

charliehorse said:


> even crazier part is right below my drug allergies that is big and bold states *benzodiazepine* .... the first treament she has is klonopon (benzodiazepine ) 3 x daily. No wonder I've been mess worse than before the diagnosis. They've given me something I'm very allergic to and have the opposite effect of me...makes me crazy and suicidal! But you can't just stop taking it bc it could kill you...so I'm stuck with taking it slowly weening myself off of it. Like I said...they aren't doctors...they are killers!


You got a really bad bad batch of doctors; I certainly cannot disagree with that.

What state do you live in? Maybe someone here can help find you a good doc!


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## charliehorse (Oct 29, 2011)

louisiana...i have a friend doctor that we go to church with who asked daniel for copies of my paperwork so he can sit down today and see what he can come up with. i know as soon as im able to ween myself off klonopin ill feel some what better.


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## Andros (Aug 26, 2009)

charliehorse said:


> louisiana...i have a friend doctor that we go to church with who asked daniel for copies of my paperwork so he can sit down today and see what he can come up with. i know as soon as im able to ween myself off klonopin ill feel some what better.


Okay, you'all!!! Everyone in Lousianna, lend a hand here w/ a good doc if you can!

What a nice friend. I am glad this is at least happening. Sending many prayers and good thoughts your way.


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## charliehorse (Oct 29, 2011)

thank you. im going for a second opinion on 12.30 and having more lab done the weeks before. im praying God give this lady incredible insight and wisdom. im seeing dr laura kimball-raviari...so pray for that doctor! lol..


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## Andros (Aug 26, 2009)

charliehorse said:


> thank you. im going for a second opinion on 12.30 and having more lab done the weeks before. im praying God give this lady incredible insight and wisdom. im seeing dr laura kimball-raviari...so pray for that doctor! lol..


I will pray for that doctor. That happens to be a very very sensible thing to do!! You got it!


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