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Old 05-07-2007, 06:58 PM   #1
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Nyxie63 HB UserNyxie63 HB User
Angry Just need to vent - Whine alert!

Got my antibodies tests back to day... they're normal. My TSH is normal. My FT4 is normal. My Total T3 is normal (can't get any of my docs to run FT3). I still have a lump the size of a lemon in my thyroid, and I think it's getting bigger (occasional trouble swallowing, pressure in throat). Btw, it's benign. Not only that, but I'm tired, cold, I hurt (my heels are killing me), my hands are in agony when they get near anything cold, the left eye twitch is driving me nuts, I'm gaining weight, ears are ringing, and my average body temperature is 97.1. I'm also forgetful, clumsy, can't think of common everyday words for things, have problems with comprehension, and easily confused. But I'm "normal".

Why is it that my drs aren't interested in trying to find out what's causing this? Why is surgery their first option when they don't know what the problem is? Why is it that when I take an active interest in my own health, they call me a "nervous patient"?

I don't expect answers to any of those questions. Just getting it out of my system. It's so bloody frustrated with the testing, waiting and lack of real answers. Bah!


 
Old 05-07-2007, 09:28 PM   #2
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Re: Just need to vent - Whine alert!

Welcome to the club of aggrevated people on this board. Doctors for some reason don't listen to how we "feel". They go by there little charts and lab tests and dont listen. Really easy to push it off on the "mind" thing. But as long as you know how you feel - keep pushing until you find a doctor that helps you.

I know this from experience. For 10+ years I "listened" to my doctors and "trusted" what they were telling me. Even though it didn't make sense and even though what they were prescribing me - psych meds - were not helping - I still listened to them - because well - they are doctors. They went to school for all this - right? Well - for 10+ years I was SCRE###. By multiple doctors. I had Graves disease. Confirmed by the surgeon who just took out my thyroid in March - she looked back over blood test from 10 years ago that clearly showed I had Graves then.

So my advice - if you feel that your doctor isn't doing what you need them to do - find a new one. Keep finding a new one until you find the one that listens to you. That is my advice.

Good to vent - that is what we are all here for. This is a frustrating illness. So glad you came here to vent - helps doesn't it. Good luck to you.

 
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Old 05-08-2007, 04:13 AM   #3
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Nyxie63 HB UserNyxie63 HB User
Re: Just need to vent - Whine alert!

Hi Loretta!

Ya know, there's a reason I refer to my drs as Dr Doofus and Dr Doofette. I have copies of all my tests (except the antibodies test), so I know they're not hiding anything from me. Problem is this dr will order these tests, that dr will order those tests, and I STILL haven't had a full thyroid panel done between the two. They won't check my FT3, cortisol, or ferritin levels, in spite of directly asking both of them.

May have finally found a dr who can help me. He's an MD who also practices alternative medicine, and he's a Broda Barnes doc. I see him on the 21st. He does a complete physical exam (including hair and nails), complete bloodwork (including nutritional and metabolic panels), and the new patient intake form is 15 pages long (including a 7-day food diary). He wants to know everything!

I so hope this guy is as good as his reputation. Was really disappointed with the last one who was supposed to be "good". She's the one who spent longer checking out the insurance information than she did on my physical exam. She's also the one who said "you're getting older. These things happen". Harrumph!

Thanks again for listening and for your response.

 
Old 05-08-2007, 05:50 AM   #4
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loretta38 HB User
Re: Just need to vent - Whine alert!

Good for you Nixie - hope this doctor is everything you need. Yes tsh - free t4 - free t3 and total t4 and antibody scans of your blood are needed. Also don't except anything other than the new 3.0 standard. Anything tsh wise above 3.0 is considered hypothyroid. Anything below I believe .30 is hyperthyroid. So keep that in mind. Got a busy day today - but will see if you have answered and talk with ya later. Have a good one today.

 
Old 05-08-2007, 06:12 AM   #5
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fred_rrrr HB User
Re: Just need to vent - Whine alert!

Quote:
Originally Posted by loretta38 View Post
Welcome to the club of aggrevated people on this board. ..... Really easy to push it off on the "mind" thing. .... For 10+ years I "listened" to my doctors and "trusted" what they were telling me. Even though it didn't make sense and even though what they were prescribing me - psych meds - were not helping - I still listened to them - because well - they are doctors. They went to school for all this - right? Well - for 10+ years I was SCRE###. By multiple doctors. ....
Oh My God - this is EXACTLY what happened to me. Fifteen years ago I was told I was just having anxiety attacks. That I couldn't handle stress. Just settle down, seek some counselling, it's all in your head. Just about made myself nuts telling myself that as my heart raced uncontrollably or my head spun...

Finally a few months ago a doctor recognized it for Grave's disease, put me on thyroid meds, and I feel much much better.

I'm finding a profound sense of vindication reading these stories.

 
Old 05-08-2007, 09:32 AM   #6
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Re: Just need to vent - Whine alert!

Nyxie - won't anyone do an ultrasound of your thyroid?

 
Old 05-08-2007, 05:00 PM   #7
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meisha HB User
Re: Just need to vent - Whine alert!

Nyxie,
Hey, long time since we comiserated. Funny thing is that I actually got fed up and ordered my own antibodies testing. I just received the results and they are also within range..do you know if your tests showed any level of antibodies or not or were the results just negative?

BJM

 
Old 05-14-2007, 04:12 AM   #8
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Nyxie63 HB UserNyxie63 HB User
Re: Just need to vent - Whine alert!

Quote:
Originally Posted by kathyinaz View Post
Nyxie - won't anyone do an ultrasound of your thyroid?
Hi Kathy!

I've had 2 done. One in Feb, and one in early April that was done in conjunction with the 2nd FNA. No comparison report was done between the two, other than to say "yup, it's a nodule all right and it's still there". Not quoting exactly but that's the gist.

I want to get another one done and a real comparison report done between the new one and the US done in Feb. Have an appt with Dr Doofus tomorrow to talk about it. Keep your fingers crossed!

Btw, sorry it's taken me so long to reply. Was out of town for a few days.

 
Old 05-14-2007, 04:46 AM   #9
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Re: Just need to vent - Whine alert!

Quote:
Originally Posted by meisha View Post
Nyxie,
Hey, long time since we comiserated. Funny thing is that I actually got fed up and ordered my own antibodies testing. I just received the results and they are also within range..do you know if your tests showed any level of antibodies or not or were the results just negative?
Hiyas Meisha!

It has been a long time. Good to see you!

Don't know what my exact antibodies levels are. They phoned in the results and hubby took the phone call. All they said to him was "the levels are within normal ranges". That could be 0. That could be at the top end of the range. Also still waiting to find out my Tg levels. Will be harrassing them today for a copy of the test results. Should be interesting.

Right now, I'm debating whether or not to cancel the appt with the endo. Supposed to see her on Wednesday. Already have an appt to see Dr Doofus tomorrow about "Herbie" (yes, I've named the nodule). Honestly, I'm just tired of having to travel and shell out the copay, only to be disappointed. The endo's about an hour away and I have to pay $25 for the privilege of being verbally patted on the head. She didn't even ask me what my symptoms were. Sheesh! On the bright side, she was the one who finally ordered antibodies and Tg testing and she put me on Armour (extremely small dose - 1/2 grain - but it's something... AND I had to argue for that. Wanted to see if suppression therapy would shrink Herbie, but the dose isn't enough to do anything). So the debate continues.

How long did it take for your results to come back? Did you do the saliva and blood spot or just the saliva tests? I'm thinking of ordering my own thyroid panels, just to see what the FT3 looks like. Also want to find out what my cortisol and ferritin levels are.

Ya know, I've been away for a week and the frustration hasn't improved one little bit. Just wondering why the dr's out there can't get their act together and just order the *bleep* testing.

Btw, how are you doing? I haven't been on this board much lately, so haven't been able to catch up on things.

 
Old 05-14-2007, 04:49 AM   #10
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Re: Just need to vent - Whine alert!

Quote:
Originally Posted by loretta38 View Post
Good for you Nixie - hope this doctor is everything you need. Yes tsh - free t4 - free t3 and total t4 and antibody scans of your blood are needed. Also don't except anything other than the new 3.0 standard. Anything tsh wise above 3.0 is considered hypothyroid. Anything below I believe .30 is hyperthyroid. So keep that in mind. Got a busy day today - but will see if you have answered and talk with ya later. Have a good one today.
Hi Loretta!

Thanks! I have high hopes for this guy. It's just agony to wait. Never been to this kind of doc before, so dont' know what to expect.

Sorry it's taken so long to reply. Been out of town for a week. How's hubby doing? Recovering well, I hope.

 
Old 05-14-2007, 03:03 PM   #11
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loretta38 HB User
Re: Just need to vent - Whine alert!

Yes - my husband is doing great. He goes tomorrow to see if he can take his cast off his neck. It is getting hot now and he looks just miserable in it. He made me try it on yesterday - for like 30 seconds - I couldn't have wore it for six weeks.

We were a mess though - I had my thyroid removed on a Thursday and the following Monday he had his disc replaced in his neck. So my 9 year old was ready to move out by like Wednesday that one week.

Thanks for asking and I hope this guy works out for you.

 
Old 05-14-2007, 07:24 PM   #12
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meisha HB User
Re: Just need to vent - Whine alert!

"How long did it take for your results to come back? Did you do the saliva and blood spot or just the saliva tests? I'm thinking of ordering my own thyroid panels, just to see what the FT3 looks like. Also want to find out what my cortisol and ferritin levels are"

Hey there!
I ordered just the 2 thyroid antibodies test. The lab sent me a labslip to take to a nearby place that took a blood sample. It took about 2 weeks to get the results, but I could have gotten them after a few days online. Lately I have been discouraged because I went to a new doc at my PCP center and he was nice but seems to be just tackling my list of symptoms without trying to find the cause. Basically he changed my antidepressant med, put me on a prescription for constipation, and I see him again in a month. In the meantime, I noticed we have some other symptoms alike. I've been having periods of periods of fluctuating blood sugar levels depending on what I eat. Also have the stuffy head and left eye constantly tearing again. Almost feels like sinus problems, but they are definately clear. Stange huh?

 
Old 05-14-2007, 07:58 PM   #13
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Nyxie63 HB UserNyxie63 HB User
Re: Just need to vent - Whine alert!

Meisha - Separated at birth maybe? We're the same age, ya know.

That sucks about the doc. With all the bad drs out there, it's no wonder malpractice insurance is so high. Sometimes I think trying to find a decent doc is like trying to find a plastic needle in a haystack. Your sinus pressure and watering eye could be allergies. I'm a little snotball lately. Can't wait until the trees are done blooming. *sneerf*

Thinking I might do the online lab thing. Finally have the $$ to do it.

Finally got my antibodies levels today. Harrumph! I got them over the phone and will be picking up a copy tomorrow, before seeing Dr Doofus. TPOAb is 5 (<20), TgAb is less than 1, AntiTgAb is 22 (<50) and there was something there listed as Total Antibodies, whatever that means. It was slighly elevated at 44 (3-40).

Will probably be patted on the head again by the endo when I see her on Wednesday. If she's going to do that, I want a cookie this time. Also went through my old blood test reports. Seems I was never tested for FT4, as well as the FT3 which I knew about. AAAGGGGGHHHH! It's no wonder I don't have a bloody diagnosis!

 
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