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Old 01-16-2007, 04:19 PM   #1
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HELP!!! Please looking for insight on many symptoms! HELP!!!

[B]Ok... I know this might turn out to be a pretty long posting but I want to fully explain what is going on to get some insight and some advice here.

This all started back in June of last year. It actually started with 3 sharp pains in chest area. I was told I have everything from Acide Reflux to Costochondritis. Basically these are all my symptoms...

Fatigue ( severe)
ANXIETY ( severe)
headaches
muscle aches
chest pain that radiates into back area
heavy gritty feeling in eyes
neck pain
swollen thyroid
inflammed thyroid
severe pain in my right leg ( burning gnawing pain)
memory loss
ringing in ears
manic behavior
trouble swallowing
shortness of breath
pain in neck
swollen lymph nodes in armpits
I am sure there are more but those are the main culprits at the moment!

I had a ultrasound a year and a half ago and another one just last week. The one a year and a half ago showed enlarged thyroid.

All the testings I had then also showed low TSH levels. My primary dr at the time just monitored the situation back then.

NOW..........
Most recent ultrasound showed enlarged thyroid ( again ) and also inflammed ( thyroiditis ).

My primary dr referred me to a endo in Oct and at that time he put me on tapazole adn told me yes I have thyroid disease.

Since then I lost that insurance and had to change dr's. That is why I got new ultrasound...

My levels have been up and down since June!! Sometimes they show normal readings and sometimes they are not. I got a peek at my lab values from last year and some of them showed low TSH with elevated T4. Not off the charts elevated T4 but I would say upper end of normal.

Now my levels have been like this....

In August my TSH was at 0.04 ( range of 0.40-5.50 )
I lost that paperwork so I do not have what my T4 and T3's were at then but I remember the TSH being at that!

10/23/06 I had my OBGYN dr test all my hormone levels and they only test the TSH and at that time it was at 0.29 ( reference range of 0.40-5.
50)

Then again sometime in november levels were at

TSH: 0.44 ( 0.40-5.0)
T4: 1.2 ( 0.8-1.8)
T3: 151 ( 60-181)

Then again in Nov I was retested due to change in dr's

TSH: 1.00
T4: 8.7 ( 4.5- 12.5)
T3: 124 ( 60-181)

There are numerous other testings I have had done in past and when I go back to new endo I am going to request all my labs from the past year and a half and see where my values were at!!

I do know basically my TSH has always been low but NOW with all these crazy symptoms I have been having and the new ultrasound results I am just wondering what the heck is going on.

I feel soooooooo BAD!!! I feel like my body is shutting down on me and I am barely hanging on here. Sinking fast I would say. Uggg...

Also they said my Isthmus was not right when they did the ultrasound????

Any help or suggestions here would be GREATLY appreciated!

Everyone here seems to be very knowledgable about this horrid disorder, disease, whatever it is it SUX!!

Thank you in advace!

 
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Old 01-16-2007, 05:36 PM   #2
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Re: HELP!!! Please looking for insight on many symptoms! HELP!!!

Hi katkatdd,

You're right it sux. Big time! You're hyperthyroid. Hyperthyroid sux.

I've been hyperthyroid for 47 years. I've had a diagnosis of hyperthyroid for 15. My situations a little different from most but I do know what feeling hyperthyroid is like. Oh, and don't let that scare you. There's only about a thousand known people in the world who've got labs like mine. Most people don't go thru a lifetime of this. They get better a lot faster.

Your list of symptoms is classic hyper. Except maybe the lymph nodes in the armpit although I've had those too but it wasn't due to my thyroid, it was due to an infection.

Have they told you what is causing your hyperthyroidism? Have they done antibody testing? Sometimes if you know what you're dealing with, it makes it easier to decide on the best course of treatment.

Your thyroid hormones seem to be falling back where they should be on the tapezole. Sometimes the symptoms lag behind and haunt you for a while. As to the isthmus, it's often a little off in thyroid diseases.

You have every right to feel bad. Your body has been awful sick for quite a while now and has been fighting quite a battle. Sometimes it just takes some time to get back on track.

My suggestion is that you hang around here on the boards for a while and vent some of the frustrations that you're feeling and get the support of some of the other people who are experiencing similar things that you are. I've found that this board does wonders for me. Just being able to talk about it with other people who understand is wonderful medicine.

Getting your labs and getting educated are going to help you a lot in winning your battle with this disease. Keep the attitude too. Looks like you're a fighter. It's going to help.

Take care and stick around awhile. We hypers need a few more long posters around here. Good outlet for all that excess energy Put on that sense of humor hat too. We like to keep the hypos entertained!

Helen

 
Old 01-17-2007, 02:10 PM   #3
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Re: HELP!!! Please looking for insight on many symptoms! HELP!!!

Thank you for the reply!!

No, I haven't had any of those other tests done yet. Hopefully with the new change in Endo dr's I will be able to request those other tests. He may want to do them anyways considering I have the enlarged thyroid with also the thyroiditis now hopefully he will look into that more and found out why I have that going on!

And oh yea I forgot to add my HAIR IS FALLING OUT as a symptom. Booo hoooo!!! I need all the hair I've got on my head geezzzz... lol. I can't afford to be just giving it away at the rate it is falling out. Sheesh.

I went today to see the Hemotologist dr because my spleen is also enlarged. But I just had my inflamed, stone filled gallbladder taken out 3 weeks ago and my GP dr was now thinking my spleen was probably slightly enlarged due to that! The hemotologist didn't seem to be overly concerned about it either. But he did order some other lab work and another ultrasound of my abdomen. He also felt my thyroid and said that YUP it is swollen and enlarged!!

uggg.. I just want to feel better again. U know looking back over the years I can now piece together how I felt then and relate it all to my thyroid. I have spent many, many years feeling horrible, tired, achy, sick for no apparent reason. But nowwww I see it was probably my thyroid all along! I just figured it was being a single mother of 4 and working full time that was doing it.


 
Old 01-17-2007, 03:01 PM   #4
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Re: HELP!!! Please looking for insight on many symptoms! HELP!!!

katkatdd,

Oh no! The hair! Is it everywhere? Clogging up the vacuum cleaner? Clogging up the drains? All over the floor? Heeeelp!!!!!

Actually, it grows back. It's just running from all those nasty hormones right now. Within 3 months after you get it under control, you should see a lot of improvement. My husbands alway pulling my long brown hair out of his teeth every time I go through a major shed. We laugh about it now. Good thing is hyper hair and nails grow a lot faster than most peoples. Those poor hypos have to wait so long to get their beautiful locks back.

It's funny how you look back and suddenly realize how many symptoms you've had for so long. Bet my mom would have loved to have known I was hyperthyroid instead of hyperactive as a child.

If you just had gallbladder surgery, on top of all the other stuff, it's no wonder you're feeling so bad. When you're hyper, any type of surgery rocks the boat a bit and can even mess a bit with the thyroid hormone levels.

Four kids and a full time job must be a handful! How old are they? How in the world do you do it? You must be some kind of superwoman.

I hope you get to feelling a lot better real soon.

Helen

 
Old 01-17-2007, 06:52 PM   #5
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Re: HELP!!! Please looking for insight on many symptoms! HELP!!!

katkatdd-
I lived in Redlands in 2000 before moving east, so I'm really missing the weather (its about 20 here!) Sorry to hear how awful you feel. There are some hyper/graves experts on this board, but I'm not one. For what it's worth, I agree with Helen about getting your antibodies checked and keeping an eye on your free T3/T4. If Graves disease is causing your hyperthyroidism then you'll probably want to have your eyes monitored as well. I hope you have or find a great doctor. I didn't have any thyroid issues when I lived in CA so I can't even recommend anyone. If I hear anything from friends I'll pass it on.

Take care!

 
Old 01-18-2007, 05:09 PM   #6
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Re: HELP!!! Please looking for insight on many symptoms! HELP!!!

@ accessn12....
Yup my hair is all over the place. ANd u know it has been that way for years I just never thought much about it or put 2 and 2 together!! LOL. But actually since I got really sick it was coming out in handfulls. Boo hooo! It has calmed down some since my surgery but still coming out.

Today was a HORRIBLE day. I am having such breathing problems or the shortness of breath again today. I HATE that! And I am guessing that is due to my thyroiditis and the enlarged gland in there. Ugg. Also have a total feeling of fullness in throat and tingling in there. ??? What does that mean? The tingling is a really strange sensation!

Actually when I think back on the years past there has always been those hidden symptoms that I just never really thought much about. I can recall many days trying to read a book even to my daughters and would get half way thru it and loose my voice, or feel like I was straining just to finish reading the book!! And I have always had that kinda fullness feeling in throat area and hard to swallow sensation.

My chest pain is also really bothering me today. I am guessing it is thyroid related also since it seems that everything else is due to my thyroid! ugg. And I have had all other tests to rule out any other reasons for the chest pains.

@ DazedNJ..
Such a small world isn't it? LOL. Well so far I can say the dr's here in Redlands are HORRIBLE! I can't even get in to see my own endo until the end of Feb!! CRAZY. And he is treating me with meds. Sheesh. lol. I have Beaver! WHere did u live when u were here in Redlands??? I really enjoy living here and I have kids and like the school district here.

 
Old 01-18-2007, 07:19 PM   #7
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Re: HELP!!! Please looking for insight on many symptoms! HELP!!!

It is amazing how much of the hair can fall out. You're going to find it amazing how fast it comes back too. My shed is just starting to come under control. I couldn't believe how much I was finding in the comb and in the shower drain. But I know for sure, it always gets better.

The chest pain, shortness of breath and the breathing problems are just about the worse cause they're just about the scariest. Always makes me wonder in the back of my head if it's a heart attack even though I've known I've had it before and wasn't having a heart attack. I know it's my thyroid causing it and it will go away but it still scares the cr** out of me anyhow. And you know what, the more scared I get, the worse it gets. I just have to get up and do something and try to get my mind off of it to make it a little better.

My neck often feels funny. It's kind of like having a high collar that's buttoned too tight. I get all kinds of strange sensations when the goiter gets bigger. It's annyoying. I get a froggy voice too. Alway feel like something's stuck and I have to clear it all the time.

How much tapezole are you taking and have they adjusted it at all since you started? Sometimes it needs to be tweaked a little to get you feeling just right. Are you taking or have you been offered beta blockers to help control some of your symptoms. They're usually very good for helping to control them until the anti-thyroid meds are totally adjusted. In fact, they should be offered to most hypers at the start of treatment because they work so well and so fast.

Ain't it fun to finally have something to blame everything on? Oh bad, bad thyroid. Actually, I have costochondritis too. It's true inflammation of the rib cage. The doctors alway insist it's not because of my thyroid. In a way I believe them, in a way I don't. The thyroid is king and rules the whole body. Why can't it cause costochondritis too? I also had what appeared to be a classic gallbladder attack a couple months ago. Of course it was on a Sunday no pcp and insurance that I would have had to fight. Lasted 4 1/2 hours and then suddenly disappeared. Looked it up and sure enough it sounded exactly like a gallbladder attack. I'm automatically blaming that one on the thyroid too and waiting for the next one. I hate thyroids.

But actually, thyroids do get better with good treatment. So the aim is to get good treatment. Education and determination help a lot too. Good buddies that you can dump your frustration on are great.

Take care and keep us posted.

Helen

 
Old 01-19-2007, 10:13 AM   #8
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Re: HELP!!! Please looking for insight on many symptoms! HELP!!!

Ohhh the dreaded Costochondritis DX!!! LOL. I find it pretty funny about that DX. It seems that is the only one that my dr can come up with. But you know how it is true inflammation of the chest wall with INFLAMMATION being the key word right?!?! HA.. Well I have had numerous testings and a couple SED rate tests which actually measures the amount of inflamation in the body and my results are always normal!! Soooo, just kinda makes me go hummm and wonder if I really do have Costochondritis???

I think it is something else causing my chest pain as it has been chronic since last June. And started after I had eaten dinner with 3 sharp pains in my sternum area. So either something more still going on with stomach or even the thyroid being enlarged maybe pushing on some nerves or something causing the pain in the chest area. Uggg I dunno. Anymore I feel like I have to be my own dang dr!

But I do not believe it is cardiac related as I have had numerous tests done even had a bubble study test done. Where they inject fluid into the blood and watch the bubbles flow in and out of the heart area to look for any holes or anything. Normal!! I had the stress testing, ecg, ekg's etc...

Any who, today I can still feel the thyroid swollen in throat area. Such a annoying sensation isn't it? LOL

I am on a low dose also of the thyroid meds. I basically have had to tweek them myself as I can't even get back into my endo dr. He cancelled my last appt with him as he was going to be out of town or something and had to cancel my appt. Grrrr.... So he started me out on a 10mg and I cut those in half but now I am wondering if I need to up it back to whole 10mg because symptoms are still really bad.

My GP had given me the Inderal but was having some weird symptoms and didn't know if they were being caused by that so he told me to stop taking it. Also was having low blood pressure issues but I think that was due to my horrid inflammed, stone filled gallbladder.

I am just still really confused and the main things that bother me the most is the ANXIETY, and the pain in chest area, and the fullness and icky feeling in throat area, and the thyroiditis I am having.

BTW, u had asked me about my kids ages.. THey are 14, 11, 8, & 6.
Awwww they keep me busy.

Last edited by katkatdd; 01-19-2007 at 10:15 AM.

 
Old 01-19-2007, 10:47 AM   #9
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Re: HELP!!! Please looking for insight on many symptoms! HELP!!!

hi kat im also called kat but the mods made me change me name lol anyway hi and hi to you h you have just told me my story to me i have swollen thyroid realy bad and it feels inflammed i have heard of that condition you said about it would make alot of sense maybe opne thing different i was diaged with hashis but when i first went on thyroxine i couldnt really tolerate a starting dose of 25 and i went up to 50 then went extreemly hyper im off meds and i still fel hyper and at the mo i have a very swollen inflammed thyroid and it is horid and the hyper symptoms are wafull im not sure if i have greaves antibodies also as my identilcle twin sis did have graves so im still waiting for a scan and i see the endo on tues what was it like or you when it was inflammed and swollen did it look big???? im so scared diid they really send you home with an inflammed thyroid and enlarged and what drugs diidthey give you sorry for the asking dunno what to do and yoy are in good hands with h by the way lots of love and i hope you feel better soom ps how long have you had to,put up ith this for>>>>>>>?? love fom katpursxxxxxxxxxxxxxxxxxxxxxxxxxxx

 
Old 01-19-2007, 11:11 AM   #10
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Re: HELP!!! Please looking for insight on many symptoms! HELP!!!

Hi Pursie!

Well I totally relate to what you are going thru also. It is horrible... U know like I said before now looking back I can say I have probably suffered with this for a long time but never really put 2 and 2 together or had my thyroid tested....

I just had the new ultrasound done on Jan 8th. I had one done about a year and a half ago that also showed enlarged thyroid back then.. The new one which was done at a really good hospital out here called Loma Linda University. Well that result shows enlarged thyroid and thyroiditis?? Not sure if those are the same things or what?? I haven't been able to see a dr yet about these new findings and can't get in until some time in Feb!! So not sure what I need to be doing about the thyroiditis. I do know my symptoms are still off the charts and it feels like there is always something stuck in my throat or like I have a sore throat. Also, the shortness of breath, and chest pains are always there it seems. The chest pains, and the shortness of breath basically started last June.

I am on the Tapazole on 10mg a day. Which I was cutting those in half so I am taking 5 mg a day. But now I am beginning to wonder if the dose is not enough.... I dunno...

U know I also had my gallbladder removed on the 21st of Dec. And that was also inflammed and really bad when they took it out. So the surgeon put me on a round of antibiotics after that. And when I started taking those I swear I could feel my throat or the area of where the thyroid is would feel like it was on fire??? Weird huh??

 
Old 01-19-2007, 01:20 PM   #11
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Re: HELP!!! Please looking for insight on many symptoms! HELP!!!

Hi kat and katkatdd,

Are we having a worldwide thyroid party? I'm feeling a bit stuck here in the middle sitting in tennessee with one of you in california and the other in england. Any aussies out there want to join us so we can circle the world?

katkatdd, it's funny how you mention the sed rate. I've had elevated sed rates in the past, always cause of something else like an infection but every time they've tested it when the chest acts up, it's normal.

I can't figure out where it's coming from either. Sometimes I think stomach. And you're right, dang the docs. Wish I could let them borrow some of my hormones for a while and let them see what it feels like.

I haven't really had any tests on my heart. Once in a while they bother to listen to it. But I don't think it's cardiac either. My opinion is that it's just the heart working a little too hard without quite enough oxygen. Thyroid hormones make the heart work harder and they also make the body require more oxygen.

10mg isn't a bad starting dose. I think I was on 15 when they switched me from ptu. When they decided to try block and replace they put my on 30 to totally supress the thyroid. At one point they had me taking 10mg one day and then 5mg the next. There's all kinds of things you can do with it but you need to stay on one dose for at least 3-4 weeks to see how you do on it. If you're still having symptoms, 10mg would probably be best for now and then if your labs show you're going too hypo, a reduction would be appropriate.

Sometimes the betas can have weird symptoms at first until your body gets used to them. They can do all kinds of weird things like cause nightmares and such but after a couple weeks, most of the weird stuff goes away. Even just 5mg at a time can be a bit helpful. 10mg even more so and 20mg at a time is usually ideal. Some people need 40mg or more taken up to 4 times a day. Inderal's a good drug. It can be adjusted as needed based on the pulse and b/p and since it leaves the body pretty fast, you don't get stuck with too much for too long.

The confusion's a bummer but it gets better. Same with the anxiety and the throat usually improves too.

I'm glad your kids are a little bit older. I know they're a handful at that age but at least they old enough to understand when Mommy's sick.

Oh, an inflammed thyroid is enlarged. Itis refers to inflamation. Anything followed by itis means it's big. Wonderful word that itis. It tells us so much doesn't it?

If I were in your shoes, I'd go back up on the tapezole at least until you see the endo again or get another set of labs that show you're going hypo. Even if you do go a little hypo, it's going to feel a bit better than the race you're running now. Don't forget that even when you're hyper you still sometimes feel major tired. That's cause all that racing around makes you tired and the body needs to rest a bit. You'll bounce up and down a bit but should see a lot of improvement soon.

Keep us posted on how you're doing.

Helen a/k/a h, h.h., or p.h.

 
Old 01-19-2007, 02:34 PM   #12
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Re: HELP!!! Please looking for insight on many symptoms! HELP!!!

katkatdd,

It is a small world! I used to live near San Mateo and Highland. Do you know where that is? One of the things I really miss are the mountains; the view was great especially this time of yearm and if there is snow. I don't have kids yet but I always thought Redlands was a nice place to have a family. I have quite a few friends teaching at various levels there and yes the schools are good.

I was reading up on your posts - boy have you been having it rough! Gall bladder surgery, ouch. At least you were at a great hospital. Is your endo there too? If so I would think s/he is excellent. Luckily, thyroid problems seem very treatable; unfortunately they also seem to require lots of patience to get to the endpoint where things are good again. Hang in there!

 
Old 01-19-2007, 03:46 PM   #13
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Re: HELP!!! Please looking for insight on many symptoms! HELP!!!

Yup I know where that is! lol.

Yea I really like it here. And can u believe it actually SNOWED here last Friday!!! Yup SNOW.... And not just like hail but actual sticking snow. haha. My kids loved it!!

Well my 1st end dr was out of Beaver clinic. But where I just got my new ultrasound done at was thru loma linda and my new endo will be out of loma linda.

My son played football for Redlands JAAF for about 5 yrs. This last season was his last with JAAF and now he will move on to play for RHS. He wants to play for coach Walker. He played basketball with Walker's boy a few years back also. So yup we enjoy it here!

I had my gallbladder surgery done out of Redlands Community. It was real nice and they are building a whole new wing of that hospital and will be really nice when they are finished with it. I don't care for their ER dept too much!! Spent too many days and nights in there trying to get a answer to why I felt so badly and they never really did anything for me.

 
Old 01-28-2007, 06:50 PM   #14
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Re: HELP!!! Please looking for insight on many symptoms! HELP!!!

I have similar test results however I do not have all the symptoms that you have. My tests are up and down a little bit. On my last test Nov. 2006, my TSH was .28 (ref. .35 - 5.0) and my T4 Free was 18 (ref. 10 - 20). Usually my TSH is worse (around .08 & .12). I do not take any medications and I don't really have any symptoms except I have a goiter and I just recently got a buzzing sound in my ears that I am thinking might be related to my thyroid. I have had the radioactive scans and ultrasounds. The scan showed that my thyroid is working OK but I have nodules (quite a few) on my thyroid and they are what make it overactive on tests. Maybe you should have the radioactive scan. They inject a small amount of radioactive dye into your arm and then you come back in 24 hours and they can tell how well your thyroid works. They also can tell if you have nodules and if they are working or not. The ultrasound can just tell the size of everything. You know it is funny but I never associated my muscle aches with my thyroid. I do have a chest pain that radiates into my back area but I thought I was fighting a virus because I don't get it all the time. You gave me a little insight into some of my symptoms and I am always telling my doctor I am fine and don't need any medication. However, I might be doing my body more harm then good.

Sorry you are feeling so bad and hopefully you can get to the bottom of it.

 
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