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Preparing for my doctor visit..any help?

Ok, so I'm having a doctor visit soon, anyone who read my previous message is aware that I'm at home wasting time because I'm being misdiagnosed and undertreated. I don't have any time to lose.

So, my goal for this visit is to get the doctor to refer me to an endocronologist. Last year, during a time when I wasn't overly concerned about my thryoid, he went to him and he had me tested for my thryoid. The office didn't call me back so I guess the results were normal. The deal is that I'm very certain my thyroid is sick. Reading all these stories about peoples difficulties in setting up endo appointments and tests returning normal even when they say they're still sick, has me feeling more assurance about my disfunctional thyroid.

Anyway, I need some help here because I'm getting more and more impatatient. I guess i'm 2 steps away from possible salvation, so to speak. Once I start talking to an endo I'm not leaving his/her office until they hear me out


so I was wondering if someone can help with me with this:

1. since this doctor already had me tested for my thyroid, how do I convince him that I desperately need to see an endocronologist? maybe I should show him this..I have some related information printed out and this is what I found on one of my prinouts: " TESTS FOR HYPOTHYROIDISM ARE NOT ALWAYS ACCURATE (i most likely have hyperthyroidism). TSH TESTS AND BLOOD TESTS ARE USEFUL TO HELP DIAGNOSE HYPOTHYROIDISM BUT SHOULD NOT BE USED ALONE. SYMPTOMS ARE THE MOST IMPORTANT FACTOR. IR IS RARE THAT A BLOOD CHEMISTY PANEL SHOWS YOUR TRUE CONDITION BECAUSE THE VALUES MEASURED ARE ONLY ABOUT 30% ACCURATE."


2. this is huge..I want to be absolutely 100% accurately tested for my thryoid, so what tests specifically should I ask to be tested for?

there are so many..are all of them necessary and am I missing anything? this is what I found:

hypotatremia
low blood sodium in older adults
neck swelling: self care flow chart
biopsy
thyroid gland biopsy
blood tests
TSH
elisa test
ferritin test
t3
t4
thryroid function tet
thryoid scan
ultrasound

this seems like a lot..will the doctor get angry if I ask for all these tests? which are most important?

thank you in advance and much appreciation
14 Responses
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1017213 tn?1301771273
By now you have already been to the doctor's office and I'm curious to see if you were finally diagnosed with a thyroid disorder??  I have most of the symptoms as you do and I am extremely hyperthyroid!!

And my doctor listened to me and the moment he found out that I was hyperthyroid he referred me to an endo.  I did RAI on 8/28/9 { leaving isolation today! }  I was diagnosed in early July { with symptoms before that but I didn't know what was going on. }  So I guess some doctors act faster than others!

Mellowscout...good luck!
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Avatar universal
Did you ever go to your appointment???
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Avatar universal
my computer just froze and erased everything i wrote

i'll just keep it short and say i truly hope you find an end to your pain soon..thank god in the least you werent' struck with cancer
lots of people have written to me not to give up and i believe that goes  for all of us

you brought to my attention that with me i need to emphasize certain symptoms that cause pain like when i swallow because those are the things doctors act on the most

i will be back tomorrow
Helpful - 0
Avatar universal
Maybe if you tell them your throat hurts to swallow they will do imaging of it. That is how they discovered my salivary problem, along with the lymph nodes, mass and calcified ligament. I ended up having to have all surgically removed at once, all came back as NO cancer...

My salivary gland would swell when I swallowed or ate anything...it was painful. They tried treating the infection with antibiotics for 3 months, but it never changed.

When they did a ct scan of my abdominal area (lossing weight), they discovered a calcified tumor underneath the aorta very low part of my spine. They could not tell if it was cancerous or not or causing my symptoms so had to have a vascular surgeon do a laparotomy to remove it and while he was in there he looked at all my other organs. They also had to remove my left ovary because it had a complex cyst on it as well.

I don't know much about EBV either, but there is a board on here for it.

I am clincally hypo, but don't have the symptoms because I am on medication for it. I have seen just about every specialist you can think of. And still no answer, so YES i have given up. Not wasting any more time being depressed over my medical problems.

My opinion, by body never recovered from being misdiagnosed with depression when I actually had graves disease. By the time it was discovered I was in a full blown thyroid storm and it screws up all your organs...that is my story and I am sticking to it...
Helpful - 0
Avatar universal
I have only had a heart ultrasound. I don't really feel any abdominal pain really. I could eat whatever I want also. My body reacts in strange ways to food. Last year when i drank milk or made scrambled eggs I could feel the pain build in my belly. Now I don't but other than that my main symptoms are the same.

Epstein barr virus? I never heard of it. So with your salivary gland issues did you have problems with swallowing and the urge to spit a lot?

Based on the tests I've had and the way doctors talk to me, I am 100% fine. What all that comes down to is I have not taken the proper tests. No one was helping me so since the beginning it was basically up to me to decide which specialist I need to see and for most of the time i thought a gastro would be ideal. Then I saw a homeopath and then finally came to the conclusion that I need a more intense approach. Synthroid comes to mind and I really wonder if that will be part of my life in the future.

I'm punching myself now because i just read some more thyroid articles and these symptoms are listed and I've never mentioned it to doctors..like a total idiot..I must have forgotten or something jeez

-thinning hair/hair structure: this is listed as a symptom of thyroid disorder..about 6 years ago I began noticing lots of my hair collecting in the shower..when I washed my hair my hands were covered in hair. I didn't know if this was normal or not. My hair has seemed to thin slightly since but i didn't go bald or anything so i didn't think it was a big deal. Believe me I will mention it from now on

-voice: my voice has deepened a lot over the last couple of years..and the louder I talk the more monotone my voice gets. I hate having this

I don't have night sweats like you Totie but when i exercise I drench myself
Helpful - 0
Avatar universal
Have they ever done a ultrasound of your abdomen, ct scan, mri?

With all the stomach issues and abdominal pain you would think they would have done one by now.  

Does your throat area hurt any?

I had to get one of my salivary glands removed, due to it being infected (sialenditis). The ultrasound of the neck also showed two growing lymph nodes, a mass on the salivary gland, and a calcified ligament. I know the pain all to well with the salivary gland, especially when trying to eat....

I went to the Gastro also, they did both colonoscopy/endoscopy, all came back normal. They were trying to find out why I had lost about 30lbs in the last year. I just feel like I eat nothing, I never get the "feel like a beach whale" feeling, it just feels like I have literally eating NOTHING.....

Can't be thyroid related, I had a TT back in 1994 (my TSH level is okay). They did think I had addisons due to some lab work coming back abnormal,(then retested and it was okay). Then they said I have protein in my blood - never knew what that meant except I got retested again, and it was okay- then, I tested positve for TB and Epstein Barr Virus. They did do the blood test for TB and it came back negative the second time around. Don't know much about EBV, other than the dr. said about 90% of the population will test positive for it. They can't figure out why I have lymphandeopathy. (Swollen lymph nodes in the back of ear and inguinal area).

The latest abnormal blood work is related to maybe diabetes. The first glucose test after 8hrs of fasting was high, so had to go do the 4hr glucose test (i really did dread that). They took 3 weeks to tell me I had to go in to see the Endo to discuss the abnormal tests results. I don't think I have diabetes, but what do I know.

I guess you really never know with diangosis, or lack of one....I finally gave up on the body aches, night sweats, weight loss, and go with the flow of my body. Really what else can you do when they keep telling you, "We know you have something going on, but we don't know what". Only reason about the glucose level was because I had to go in for my yearly blood work from the Endo.

I deal with the night sweats, eat what I want, and take aleve & tylenol for the body aches. So far doing okay.

I have my Endo appt. tomorrow as well. Really not expecting any answers, but I will go to humor them. I will get copies of my lab work as well.

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Avatar universal
i forgot to mention a few very important symptoms that I have

-problems swallowing: i eat very slowly..my gag reflex kicks in very quick when i start eating

-heart palpotations: usually at night this occurs

-salivary gland issues: i spit a lot like not only when i'm outside jogging or playing sports..my dentist was the first to notice i have a salivary gland condition

Helpful - 0
Avatar universal
it could be IBS but then again the root of that problem could stem from the malfunctioning thyroid..the first few years i though the problems were gastrointestinal but going with that approach got me nowhere

this has to be metabolic and metabolism - thyroid

bad thyroid = metabolic problems = bad liver/intestines = absorption problems (gas/hunger/fatigue/mental fog)

i don't know with all the time i've spent with doctors someone should have explained all this to me by now

well anyway i happened to call Dr. Trinh who works downtown Toronto, and the receptionist let me know that along with the t3, t4 and antibody tests, i should also ask for an ultrasound from my family doc..so i just feel more assured now of what to say and i guess i can't really ask for a referal. they will run the tests and i guess we'll see how it goes from there.
Helpful - 0
Avatar universal
In my opinion, your symptoms do not sound thyroid related.

Have you looked into diabetes? I am like you, I never feel full. (Currently under weight). I can eat all day.

Or it could be IBS?

Again, just my opinion.
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Avatar universal
I will definately post my results here as soon as I get them. My mind is so thrown off by these doctors and there ever so strong unwillingness to send patients to endo's that the paranoid side of me is thinking even if these results prove I'm not right, they will manipulate and alter them just to spare me that visit.

Regarding celiac disease, I have been tested for it. I had a sigmoidoscopy and colonoscopy performed and all they found was some minor inflammation. I have not had any success with gastrointerologits. They thought my solution was as easy as taking some prozzak. So as much as I enjoyed those visits I don't think I will be taking that route any more.

My main issue is malabsorption. I think its because my intestines are not absorbing the nutrients (which are being wasted) I am always hungry, cannot gain any muscle despite lifting weights all the time but i stopped now, my mental focus is lousy, and I get the unorthodox gas symptom.

I will let everyone know how my visit goes, which is Friday morning.
Helpful - 0
231441 tn?1333892766
Hi,

it is also possible that your symptoms are something other than thyroid.  To me your symptoms could indicate some sort of food intollerance or malabsorption.  Can you be tested for celiac?  This is one of the most common food intollerances.  

If you don't get to see an endocrinologist, maybe a gastroenterologist would be worth considering.

Please do google coeliac and food intollerances and see if they ring any bells for you.

S
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Avatar universal
If you have him run FT3, FT4 and TSH, you will have a much better idea of what your thyroid status is than if he just re-runs TSH.  However, even if all your tests are in reference range, you could still have a thyroid issue IF the numbers are close to either end of the range.  Many of us still feel hypo unless our numbers are well up into the top half of the ranges for FT3 and FT4 and the lower end of the TSH range, or even below.  And vice versa for hyper.  

Getting these numbers is a start, and if you post them, members will help you interpret them.  Your symptoms sound hyper.  Get the antibody tests also.  If your FT3, FT4 and TSH fall into reference range, but your antibodies are elevated, it will be much harder for your doctor to try to tell you that everything is okay. Antibodies seem to wake them up since it's a definitive indication that "something is wrong" that even most doctors will understand.  It should at least get you a referral. Ask for TRab also, which is an indicator of Grave's.

Let us know how it goes.
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Avatar universal
thanks goolarra
no i have not been diagnosed with a thyroid disorder yet i wish i have been

ok so the first tests i should have performed are FREE T3, FREE T4, and TSH
i am assuming the doctor ran a standard tsh test which is the infamous inaccurate test most people complain about.

my intention is to ask for copies from now on without question

the background info on me is that i am a 26 year old male and i've been battling with these symptoms since i was 20. my symptoms include: constant hunger (i also cannot seem to gain weight no matter what i eat), involuntary gas (which is most likely something you've never heard about anywhere), terrible memory and poor concentration, jaw pain, chronic fatigue, i eat very slowly (if i eat at a regular persons pace i feel my gag reflex kick in), the urge to spit constantly (salivial), and i also have small rashes on my upper body i've had for 6 years.

i have an appointment with a doctor on friday, this is the same doctor who ordered i take a blood test and never got called back..so i need to convince him to send me to a endocronologist, this is the hardest part

i forgot to ask this question:

>>lets say this doctor asks that i redo the blood test before sending me to an endocronologist, do i ask him to test the free t3, t4 and tsh on me?
if so, will these tests 100% accurately establish that my thyroid is either functional or not?<<

thank you so much
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Avatar universal
Am I correct in assuming you have not been diagnosed with a thyroid disorder yet?  If that's true...

The first tests you want to have done are free T3 (FT3), free T4 (FT4) and TSH.  These are the three basic tests..  Make sure they run free T3 and free T4 since these are better indicators of thyroid status than total T3 and total T4.  You might also include TPOab and TGab, which are the tests for thyroid antibodies and would indicate if you have an autoimmune thyroid disease (like Hashimoto's or Grave's).

Whenever you have any lab work done, get into the habit of getting a copy of the lab report for your records.  If you post your lab results (along with the ranges for FT3 and FT4) members can help you interpret them.  Never settle for "The office didn't call me back so I guess the results were normal".  We can't tell you how many times people fall through the cracks or testing was inadequate or the lab and/or the doctor are using an obsolete TSH range.

I agree that symptoms are most important.  What are your symptoms?  I don't know how old the article was that you were reading that said thyroid tests are not that accurate...I think they've improved tremendously in the last couple of decades.

My guess is your doctor didn't do enough testing or is relying on antiquated range for TSH.  Can you get a copy of the "normal" lab report and ranges for you thyroid tests from him?
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