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Old 12-07-2004, 06:49 AM   #1
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irys HB User
Some help and support is needed...

Hi everyone -
I'm new to the board, but not new to how crappy I feel. I'm at my wits end!!

A little background: My mom has hashimotos, my mom's sister has thyroid cancer, my mom's mom has had part of her thyroid removed.

I'm almost 24, and in the past, oh, 2 years or so I've had a pretty big surge in my symptoms.. fatigue, anxiety, loss of sex drive, dry skin, weight loss troubles.. a whole host of things. My boyfriend is trying really hard not to flip out at me because my mood swings are quite bad, and almost a daily occurrance - he understands it's not me, and it's very hard for me to control. He's being quite supportive.. which does help, but it sucks he has to deal with me giving him attitude.

Anyway. Last June I approached my GP about this for the 3rd or 4th time - right after my mom and aunt were diagnosed with their progressed diseases.. she ran a TSH test (again), and my results were as follows -- 2.79 with the ranges for this lab being 0.27-4.20 uU/mL.

She informed me I was normal (again) and didn't push the issue of my symptoms any further. She even did a test for CFS in june which also came back normal.

I'm seeing an endo for the first time in the middle of January who has seen my lab test from June and ordered several more thyroid tests for me before I even go see him (Free T4, antibodies.. there were more..) Hopefully that shows something isn't quite right with me and he's willing to try to help me out a little - I'm seriously ready to give up.

It's so hard because you *know* you're not making up your symptoms, and you just *know* you're not right, but nobody that can do anything believes you..

 
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Old 12-07-2004, 08:04 AM   #2
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Re: Some help and support is needed...

Don't give up!
It's promising that the endo is planning more extensive testing. The antibodies tests are important to see if you've inherited your mom's Hashimoto's. The free T4 is vital, as is the free T3 (hope he's doing that one, too). If your free T hormones are below the center of the lab range, it's further proof that you need a trial of supplemental hormone. Your TSH is considered high-normal, and that shows your GP doesn't have a clue about thyroid disease. Don't trust her for anything related to it.

Getting a diagnosis frequently takes as many as six consultations with different doctors... That's how few of them really understand how to interpret the tests. And that also assumes they know the right ones to do.
As I said, don't give up. I'd bet a buck or two that you do have thyroid issues.
Let us know what your test results are, especially if the endo says you have no problem.

 
Old 12-07-2004, 08:13 AM   #3
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Re: Some help and support is needed...

Hi There,
I know how you feel, I have been trying to get a diagnosis for a year now, i also know i have thyroid problems, but the docs have been brushing me off for quite a while, and yesterday i was "diagnosed" with fibromyalgia which is a total crock. You have to keep pushing them, you know what's going on in your body they don't and I won't rest until I feel better and you shouldn't either, it's about time we stood up for our rights as patients it is ridiculous that so many people suffering from thyroid problems take such a long time if ever to get diagnosed. Hang in there!

 
Old 12-07-2004, 08:16 AM   #4
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Re: Some help and support is needed...

Welcome to the board, There are a lot of knowledgeable people here who will take the time to answer your questions. Dr's are a frustrating bunch of people are they not? I have had good luck with the endo's though. Its just GP's I have a problem with. Sounds like you could have thyroid problems you certainly have the symptoms.

 
Old 12-07-2004, 08:40 AM   #5
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Re: Some help and support is needed...

Quote:
Originally Posted by midwest1
Don't give up!
It's promising that the endo is planning more extensive testing. The antibodies tests are important to see if you've inherited your mom's Hashimoto's. The free T4 is vital, as is the free T3 (hope he's doing that one, too). If your free T hormones are below the center of the lab range, it's further proof that you need a trial of supplemental hormone. Your TSH is considered high-normal, and that shows your GP doesn't have a clue about thyroid disease. Don't trust her for anything related to it.

Getting a diagnosis frequently takes as many as six consultations with different doctors... That's how few of them really understand how to interpret the tests. And that also assumes they know the right ones to do.
As I said, don't give up. I'd bet a buck or two that you do have thyroid issues.
Let us know what your test results are, especially if the endo says you have no problem.
It's pretty terrible actually - I told my GP that my mom has always fallen well within the "normal" range, and she said that eventhough I'm basically doomed to have thyroid problems, my results don't suggest I should be medicated at such a young age. (which I know is total bull..) Before I found an endo that would see me I was ready to print out a bunch of literature and take it to her, but I decided against it since I've already seen her about it several times. It's a shame because she is a good doctor (at least for other stuff..).

Like I said the endo is doing quite a few tests - I had asked the nurse which ones, but she couldn't read his handwriting. In the next day or so I should receive the requisition for the lab and I'll see what he's ordered..

It's really a shame more doctors don't know more about this, or try to learn about it since it really is very very common.. especially among women.

Thanks for your advice, I'll certainly be back

 
Old 12-07-2004, 11:24 PM   #6
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Re: Some help and support is needed...

Hang in there!

I knew there was something wrong with me...both my gyn and gp brushed me off...very rudely, peppering me with insults...for a year and a half. I went to an Endo, and a Holistic doctor...and still nothing.

It wasn't until six months after that...when I fianally aquired insurance to see this $200.00 Endo...when my nodule was discovered.

It was really really small.

But you see the lab ranges used to be higher..up to 5.0 and they thought you could rule out disease with them. So, basically my symtpoms showed before the ranges were brought down and before they would have ever suspected anything.

I had gained about twenty pounds over night which I knew HAD to be a bad sign. I always weighed about a hundred pounds and couldn't gain a pound if my life depended on it...so I knew SOMETHING was wrong.

I dismissed as having a "body image problem" by my GP...after paying her $80 dollars and the lab $120.

You see...it may take awhile, but you know you better you than any guy with a plaque on his wall.

Keep pushing...

~S

 
Old 12-08-2004, 09:29 AM   #7
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Re: Some help and support is needed...

It always amazes me how quick doctors are to discount what you're telling them. I never really understood it until about a year ago when I went to the doctor saying "no look, I really am still tired.. something isn't right" and nothing was ever looked at again when the thyroid tests came back normal. Like they expect this feeling to go away or something. It's hard enough getting time off work to go see them - they should help me while I'm there - or at least give me some advice. something...

Moreso than anything I need to get these mood swings under control - they're taking over my life and it really is taking a toll on me and my relationship. My boyfriend said just last night how hard it is on him to deal with the mood swings, and I wanted to ask him how hard he thought they were on me - I've no control over them!


I'll keep pushing, but it's really tiring pushing against a brick wall, you know? It's a shame..

 
Old 12-08-2004, 10:12 AM   #8
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Re: Some help and support is needed...

I had the same problem. No one believed me that I was sick because the blood tests were always normal. I had all the symptoms of thyroid disease. Now, two years later, I have had my thyroid removed due to Hashi's.
You may want to ask for an ultrasound or a thyroid uptake scan. I don't think they can deny it if you push the issue. This could detect nodules that may not be able to be felt.
Nodi

 
Old 12-08-2004, 10:43 AM   #9
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Re: Some help and support is needed...

Quote:
Originally Posted by NodiGoiterGirl
I had the same problem. No one believed me that I was sick because the blood tests were always normal. I had all the symptoms of thyroid disease. Now, two years later, I have had my thyroid removed due to Hashi's.
You may want to ask for an ultrasound or a thyroid uptake scan. I don't think they can deny it if you push the issue. This could detect nodules that may not be able to be felt.
Nodi
I'm seeing an Endo for the first time January 15th, and he's ordered a bunch of tests for me to have done before I see him - I haven't received the letter from the doctor yet, but hopefully the uptake scan is one of them..

 
Old 12-08-2004, 04:10 PM   #10
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Re: Some help and support is needed...

By the way about the boyfriend:

I don't know what yours is like, but I can tell you, I wish that I had not been around a boyfriend while I was going through this stuff.

Mine was very new and misunderstood entirely. He instead judged, and mocked me, because he couldn't understand how my chemistry mangled my charm...and transformed me into a highly wretched, grotesque person. I am STILL mortified.

Prior to this, I had been the perfect, extremely grounded elegant personality. I'm not surpised he was attracted to me....then. I was really something amazing.

Afterwards, when he dumped me....I wasn't surprised that his skin crawled at the sight of me. My skin crawls when I look at myself too. I don't blame him.

I am still haunted by the way I spoke to him. Certain ugly scenes menace me every day. Its like a polergiest took over. Like the boyfriend went out with a really horrible imposter. She looked like me...how could he know? Really "know" what I was going through?

I still wonder what would have been in store for me if I had understood this whole thing better...going in. Perhaps I could have told him to give me a call in six months...

Now I understand...a hormone imbalance has some pretty ravanging effects. Just being a "little off" comprimises your very personality, will, decision making, mood, thoughtfullness, cognition and memory.

There's a thing called "dynamics"...and you can't control them when your hormones are off.

Yes...it is scarey as hell when you are on the inside...much scarier than for those who are outside of you. But, they don't grasp that. After all, its not like a broken leg that people can plainly see.

The doctors have no clue...and its there job. Asking anybody else to understand is almost a waste of time.

Please take care of yourself, and protect yourself. You are going to need a good strong focus.

Warmest Regards,

~S



I regret to this day, that I didn't just tell him I need some time alone to get straightened out

 
Old 12-08-2004, 04:38 PM   #11
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Re: Some help and support is needed...

softcrush -

I'm sorry to hear about what happened to you.. that must have been horrible to deal with

I'm lucky enough to have a very supportive boyfriend. Mark and I have been together for over 6 years, and he understands what I'm going through. He was SO happy when I told him I was going to see an endo.. he's even going with me to the appointment to help me remember what the doctor says so I don't get caught up in the moment. I tried to explain to him tonight at dinner actually what's happening to me, and even if he's on the receiving end of it - my head is screaming at me because I can't control how I'm acting, and I'm upset for no good reason. He knows it's harder on me than it is on him...

He did say that he's noticed the mood swings have increased in frequency to maybe 4 times a week in the past month or two, and he's right. They've also increased in the "swing" of the mood too.

I'm very lucky to have him supporting me and making sure I'm taking care of myself. He truly is the best, and I can't wait to marry him

Thanks for your input though. I've only been posting here for a couple days and the support I've been receiving has been awesome. It definatley helps

 
Old 12-09-2004, 08:13 PM   #12
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Re: Some help and support is needed...

Irys:

Thanks for the kind words. It really means quite a lot.

I'm glad you have a supportive boyfriend. That is sooo cool for you! Yeah..as I've been around the boards, I've seen some amazing stories. Some guys are very sweet and supportive. I love to hear that. I merley wanted to let you know so you could brace yourself for what may be quite the crazy ride.

Preparation really counts here.

Good luck,

~S

 
Old 12-09-2004, 08:31 PM   #13
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Re: Some help and support is needed...

I feel for you too! Im 22 and I have been to my DR 3x in the last 6 months complaining of hyperthryoidsim symptoms. (It took that long for them to let me get a blood test.) Even the nurse was convinced I had it. But my tests all came back "normal", whatever that means! I know that something is wrong with me and basically they think im a hypochondriac. The DR said since I'm not losing weight then I dont have it, even though I have 15 other symptoms The only thing they gave me was Xanax for my heart palpitations. Yet I still have all of the other symptoms. I hope for your sake and all of ours, GP's start getting a little better grasp on the endocrine system.
Good luck

 
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