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Old 08-18-2004, 10:01 AM   #1
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KrystlM HB User
newbie - hyperthyroid/Grave's disease?

Greetings all,

I want to say up front, please forgive my rant.

HELP!

Yesterday, a family pract. that I've seen exactly twice, called to tell me that she believes I have hyperthyroidism because of the blood work I've had done.
After disbelief (I'm 35 and have been pretty sound up until now), shock and many tears.. I've decided to learn as much as I can about this...
Please help me interpret this info:

I have a copy and the numbers are as follows:
My results:
TSH 0.063L
Thyroxine (T4) 17.9H
T3 uptake 35.8H
Free Thyroxine Index 6.4H

Limits:
TSH 0.30-5.00
Thyroxine (T4) 4.5-12.5
T3 uptake 23-35
Free Thyroxine Index 1.2-3.4

Of course I have no idea what this means. What concerns me the most is that she scheduled me for a Thyroid scan with uptake (the little radioactive pill... I know many already know what this is about.... please excuse my ignorance) and referred me to an Endocrinologist.....
I have seen a few sites that say this little radioactive pill can actually cause further complications? Does anyone have an opinion or their own experience on this?

The Dr. Fam Pract. was able to tell me WHAT was happening, my thyroid is producing too much hormone.. but not WHY this is happening... wants to put me on inderal until I can see the Endocrin. next month.

I've also started researching naturopathic solutions.. at 35, the idea that I may have to be on medication for the rest of my life is not appealing.

HELP! I'm frantic and at a loss about this whole thing. Any insight and help will be greatly appreciated.

Thanks for reading,

KrystlM

 
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Old 08-18-2004, 10:45 AM   #2
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Join Date: Feb 2003
Location: Texas
Posts: 2,959
dea4 HB Userdea4 HB Userdea4 HB User
Re: newbie - hyperthyroid/Grave's disease?

Hi,
Welcome to the boards.

It does appear that you are hyper, your numbers are well above range and your TSH is very low.

There is a poster here who is very knowledgeable about hyper-T, her user ID is K9Mom, hopefully she will be on soon and see your post, she will have good advice for you.

Also you may want to go to the advanced search (click on search then advanced search) and search for posts by user, put in K9Mom.

Try to stay calm, it is a scary thing to have happen, but it is treatable.

And by the way, don't apologize for ranting, you can rant here all you want.

Take care and keep us posted.


Last edited by dea4; 08-18-2004 at 10:47 AM.

 
Old 08-18-2004, 01:04 PM   #3
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KrystlM HB User
Re: newbie - hyperthyroid/Grave's disease?

dea4,

Thank you so much for the support and advice. I will definitely search for K9Mom's posts.

Peace,

KrystLM

 
Old 08-19-2004, 11:01 AM   #4
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Location: western ny
Posts: 944
jtu91952 HB User
Re: newbie - hyperthyroid/Grave's disease?

I wish i had a computer when i was diagnosised. I was given only two choices, surgery or RAI. I was soo scared and i went by myself. Of course they told me i had to decide right then and there. I took the RAI and now im stuck with taking levothroid meds for ever.

 
Old 08-19-2004, 01:51 PM   #5
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KrystlM HB User
Re: newbie - hyperthyroid/Grave's disease?

Hi everyone,

Thanks for the support, and K9mom, thank you for all of that information.

I just got off the phone with my GP, I asked about the TSI testing, she hedged around and said that she already tested for that and it came back hyper. Which of course is not the same thing as everything else I've read on the net regarding the TSI test, and was unable to tell me specifically which number on my bloodwork results pointed to the TSI test specifically.
(o.k. I'm actually getting scared that my GP doesn't know anything about this, but am happy that she at least knows enough to send me to a 'specialist')

I have ordered the two books suggested (thanks again K9Mom) so that I can start somewhere, and frankly, I'm pretty sure I'm going to need the "thyroid for Dummies" book.

Anyway, when speaking to my GP, I told her that I was nervous about this thyroid scan with uptake test because of the little radioactive pill they make you take. She of course says that it is perfectly safe and she'd do it herself if she tested hyperthyroid.

Apparently she wasn't very happy that I knew the name of the pill that the Nuclear Medicine department gives you (I23) and my reading about the I25 that some other hospitals use for the scan and that I35 is used for RAI.

She said that my researching this on the net was 'dangerous' (which I don't really understand how reading everything you can to make an informed decision could be termed 'dangerous') because not everything on the net is true and some of the information posted are by people who are not 'trained physicians'
I of course told her that I realize that you cannot believe everything that you read on the net, but I didn't see how more information could hurt you than less. I'm starting to think she might have a "God complex" and doesn't like having to explain her decisions.

She then proceeded to tell me that I can skip the test or get a second opinion or go straight to the endocrinologist but that I should start the inderal, that is if I wanted to take her recommendation, which I of course am not obliged to do. (blah blah blah) looks like I might need a new GP.

I found a website:
[url]http://www.thyroid-info.com/topdrs/[/url]

which lists top thyroid doctors. I did find one endo that came HIGHLY recommended but you can't get an appointment to see him until next year :-/ which is disappointing.

anyway, thanks for reading :-D

KrystLM

Last edited by KrystlM; 08-19-2004 at 01:58 PM.

 
Old 08-19-2004, 04:34 PM   #6
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Location: Georgia, USA
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K9Mom HB User
Re: newbie - hyperthyroid/Grave's disease?

Hi KrystLM,
Don't worry, I think we've all had that little talk with our doc's about how getting info on the net is "dangerous". I personally feel they are just afraid that we will wind up knowing more than they do! We have the luxury of being able to focus specifically on our disease when we do research...they have to learn the whole endocrine system.

I think you will like the Thyroid for Dummies book...it is an easy read and explains a lot. You can go straight to the chapters on hyperthyroidism/graves. I used to remember the page number (and I've loaned out my copy of the book) but Dr. Rubin has a section called "My Preference of Treatment" which is in a highlighted box (page 74 or 69 - can't remember!) pay attention to what he says about his treatment choice for hyperthyroid/graves patients. It makes good sense.

The Top Doc site you found can be helpful for finding a doctor...but just be aware that most of the doc's listed get on the list by HYPO patients recommendations. That does not necessarily mean that the doctor will be able to treat HYPER any better than the next guy. Hypo is much, much more common.

Take care and let us know how things go for you.
__________________
Dx Graves 4/99, tx w/Tapazole & Atenolol - Remission 7/03; Relapse 1/06, back on Tapazole, remission & off meds again 11/06.

 
Old 08-19-2004, 06:04 PM   #7
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dea4 HB Userdea4 HB Userdea4 HB User
Re: newbie - hyperthyroid/Grave's disease?

Quote:
Originally Posted by KrystlM
She said that my researching this on the net was 'dangerous' (which I don't really understand how reading everything you can to make an informed decision could be termed 'dangerous') because not everything on the net is true and some of the information posted are by people who are not 'trained physicians'
KrystLM
This coming from a GP who has had maybe 1 hour training on thyroid issues. Yes, most GP's have only that amount of training, sad, but true. Perhaps they should research the internet a bit more often.

 
Old 08-20-2004, 08:10 AM   #8
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Margofran2 HB User
Re: newbie - hyperthyroid/Grave's disease?

I need help. I have a lot of symptoms of Grave's disease, but blood serum levels are normal. I had a radioactive idione uptake. The following is the impression: Findings consistent with hyperthyroidism. Findings would be highly suggestive of Graves' disease, given enlarged gland, diffusely increased uptake through both thyroid lobes as well as increased 24-hour radioiodine uptake of 45%. Recommend cliniccal and biochemical correlation. If clinically indicated, recommend radioiodine treatment for hyperthyroidism/Graves' disease.

Now my problem the endrocrinology says he does not think I have a thyroid problem. He had me wait in the exam room for 35 minutes then spent about 10 minutes with me. Five of those minutes outside the room looking at lab results. He asked to see my hands they were not shaking because I had taken my beta blocker 6 hours earlier. He looked at my medication and then sent me this letter:

Repeat throid test again show that your thyroid blood hormone levels are perfectly normal. The high uptake on the thyroid scan by itself does not prove that you have an over active thyroid. I do not think that your thyroid is overactive. You do have a fast heart rate but other problems can cause this.....

The following is a list of my symptoms before the beta blocker:

High Pulse--on 24 hr halter monitor ran 92 to 144
High blood pressure--one reading 292/176
Hard heart beat
Increased appetite
Weight loss 21 lb although pretty stable now since I am eating enough to kill
a horse.
Increased loose stools
Increased arthritis pain
Problems with TMJ
Feeling too warm
Night sweats
Hair loss seems better since beta blocker--How come?
Hands shake without beta blocker
2 to 3 hours sleep a night with Ambien 10Mg
Tired easy
anxiety attacks
vomiting
gag refluex
coughing
feel suffocating with head back
Allergies
sinsus problems
difficulty climbing stairs and descending stairs
have had a few headaches
back pain over my kidneys

That is most of my symptoms I may have missed a few.

I did not go to the Endrocrinologist's with a list because my doctor was sending his notes and we had been over it all. I went back to my family doctor and he upped my beta blocker and said see you in 6 weeks.

I could give you a sample menu but believe me it must be 4,000 to 5,000 calories a day.

Now for my lab values:

TSH -- 2.0 Normal 0.49 - 4.67
T3 Uptake 38.1 Normal - 24.0 - 41.0
FTI -- 2.4 Normal 1.2 - 4.9
T4 -- 6.3 Normal 4.0 - 12.0
T3 -- 148 Normal 85 - 205
Anti TPO Ab <10 Normal 0 - 34

I am on a HMO so I am limited to which doctor I can go to and I really do not feel I can afford to go it on my own. I have requested a second opinion so I hope I will be approved.

With my nerves the way they are all I need is this hassel.

My question is it possible I have Graves' disease with the normal serum levels?
I feel like a hypocrondriac. I just feels everyone thinks this is due to my manic-depressive illness. My family doctor said he is going to consult with my psychriatrist.

Please someone help me!

Margo

 
Old 08-20-2004, 01:24 PM   #9
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Join Date: Feb 2003
Location: Texas
Posts: 2,959
dea4 HB Userdea4 HB Userdea4 HB User
Re: newbie - hyperthyroid/Grave's disease?

There is no normal when it comes to thyroid, the ranges are gauges and just because your numbers are "in range" does not mean its normal for YOU.

K9Mom may clarify this better because she knows more about Graves, but here is my thought.
Your T3 and T4 which I assume are totals are both a bit on the low side, your FTI (free T index) is also on the low side. What your dr does not have here which is important is the FREE T3 and FREE T4 as well as TSI antibodies. The TPO antibodies are generally associated with Hashi's and sometimes Graves, but TSI are only associated with Graves.
You need a better dr. Am I understanding that the radioactive iodine uptake said you are postive for Graves?

Hope all turns out well, keep us posted.

 
Old 08-20-2004, 02:44 PM   #10
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Margofran2 HB User
Re: newbie - hyperthyroid/Grave's disease?

Yes the radioactive idione said I was positive for possible Graves' disease.

Margo

 
Old 08-20-2004, 05:00 PM   #11
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Join Date: Feb 2001
Location: Georgia, USA
Posts: 662
K9Mom HB User
Re: newbie - hyperthyroid/Grave's disease?

Hi Margofran2,
I agree that the tests that were run on you really are not the best tests to check thyroid function. The Total T4 and Total T3 tests can be influenced by estrogen and OTC meds like asprin....therefore, the "Free T4" and "Free T3" tests are better for assessing thyroid function.

DEA, you're right...it is the TSI antibody test (Thyroid Stimulating Immunoglobulin) that is the definative test for Graves, as this is the little bugger that causes Graves.
__________________
Dx Graves 4/99, tx w/Tapazole & Atenolol - Remission 7/03; Relapse 1/06, back on Tapazole, remission & off meds again 11/06.

 
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