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Old 08-14-2003, 09:48 AM   #1
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kael HB User
Unhappy In need of support

I'm so sorry you guys, but you are like my lifeline right now. I am having such a hard time and I don't know where else to go to find anyone who sort of understands some of what I'm going through.

Anyone who's read my past posts knows that for about 4 months now I've had this strange undiagnosable illness - no one can tell me what's wrong. I've seen two neuros, two rheumies, an endo and 6 or 7 GP's. For a while, I was completely disabled - lost 20 pounds, couldn't eat, couldn't sleep, twitches everywhere, adrenaline rushes, dry heaves, muscle cramps, strange sores on my tongue. Well, slowly I began to improve. Got my appetite back, started solid foods again, slept about 6 broken hours a night instead of 1, had the strength and mental capacity to take a shower, get dressed and be with my kids, etc.

Everything was improving until about three days ago, and slowly my symptoms have started going back in the other direction again. Big trouble sleeping, adrenaline rushes, loss of appetite (lost 2 pounds), dry heaves this morning, and low and behold...another sore on my tongue. All this after much improvement over 3 weeks time.

I can't think of what I've changed that brought this on other than adding a couple of things back into my diet (which I've now removed again), got my hair highlighted last Friday (couldn't stand it any longer) and the doctor upped my dose of Synthroid from 1.25 to 1.5 two weeks ago. I'm supposed to kick it up to 1.75 this week, but I'm scared because of what's going on in my body.

It is SOOOOOOOOOOOOOOO depressing to feel better and be on the mend only to go back the other direction. I have been sick for 4 months already, when can I have my life back????? I'd like to think this could all be thyroid related, but the endo says that's unlikely. I don't know what to think, but I can't live like this for the rest of my life. My family is totally suffering.

I know I should be grateful ... and I am ... that they've ruled out MS, Parkinson's, Brain tumor, Lupus, etc. I have a positive ANA titre, and am positive for thyroid antibodies - and EVERYTHING ELSE LOOKS NORMAL. The doctor's tell me I am a "very healthy person" - then why do I feel so crappY????? Before 4 months ago, I felt wonderful - and I've been hypothyroid for 20+ years. I've always just taken a pill and not thought about it.

I'm not handling this well at all anymore.

Sorry, sorry, sorry for venting. I just needed to cry on someone's shoulder. It is petrifying to be this sick and not have any doctors be able to tell me what's going on in my body.

Hugs To You All,
I'm so glad I found this board,
Kael


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Old 08-14-2003, 10:28 AM   #2
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Kael...your post nearly made me cry. My mom has some of those sumptoms. It took them forever to diagnose her. She has been treated for hypo for many years and she has gone through hell with that. Now she is suffering from polymialgarhuematica(sp?). There are other symptoms that don't fall under the line of this disease and she is still having tests done. I am afraid I may be folowing her also. I am also scared of what is to come. I am only 30 years old and I don't want to feel like crud for the rest of my life. This is not how I want my children to remember me. I love this place because it seems like everyone here has gone through the same thing or really knows how you feel. I am here for you if you need to vent and I wish I could make it all go away for us. I know how you feel and don't blame you for your frustrations. I don't know how you feel about the good man up above. But he has been there for me in more ways than one. I will pray for you and hope an answer for your problem is figured out soon. God bless-Roni

 
Old 08-14-2003, 11:28 AM   #3
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dlkk HB User
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Kael-
I just wanted to say hang in there and keep looking for what might be wrong. Information is power. Sometimes you know better then the doctors on what is going on with your body. Don't give up! The answer is out there.

Your not too far from where I live, there has to be some good doctors there in Temecula, if not look outside of the area. Good luck!

 
Old 08-14-2003, 01:32 PM   #4
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I'm a newbie here, but will someone respond? Don't these symptoms sound like hyperthyroid? The anxiety, insolmnia, panic, inability to eat, losing weight. If he is increasing her medicine, isn't that telling her thyroid to release more hormone which is going to make her more twitchy, more anxious, more nausious, more sleepless? Can someone out there help her out? Thanks! Since he says all her other tests are normal, I guess I would want to know which tests, and what the results were for myself.

[This message has been edited by samrhett2 (edited 08-14-2003).]

 
Old 08-14-2003, 01:50 PM   #5
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kael HB User
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Thanks Sam - and everyone else who has posted since my breakdown moment thismorning! Yes - I do have hyper symptoms, and I have posted that all over this board, but my levels definitely show hypo. My T4 is high, my TSH is high, but my free 3 and 4 are low. All the other blood work I refer to that is normal is sed rate, blood count, mineral levels, etc. I've had MRI's, nerve and muscle tests, etc. - you name it, I've had it. Crud, I don't even know if any of what I am going through is related to my thyroid - but I know that's the one thing that is clearly out of whack right now. My TSH has gone up and down - by like 5 points about 4 times in the last 3 months - even Meep thought it was weird - but I do have antibodies, so he said that could do it. Now I'm supposed to up my dosage again, and I'm a little scared - but the truth is, I've been at this doseage for about 2 1/2 weeks now and was steadily feeling better until about 3 days ago. My biggest complaint is the not sleeping. I could handle everything else better on some sleep. I haven't slept through the night in over 3 months. I'm just about to resort to sleeping pills - but even those scare me. I've had many reactions to antibiotics and am allergic to alot.

Thanks for the concern. You guys are literally keeping me going right now.

Kael
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Old 08-14-2003, 03:53 PM   #6
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Thyroid problems are never fun, you say you have antibodies, this is most likely why you have hypo/hyper symptoms. Thyroid problems are so complex and involve so much of the body that the symptom list can be crossed over, meaning at any time you may have symptoms from the hypo list as well as the hyper list. If I look at the list of symptoms I too will have some from the hypo list and some from the hyper, seems like the symptoms don't discriminate, they visit you regardless of what type of thyroid problem your blood tests say you have.

Hang in there, I know how you feel, seems like just when you think you are feeling fine, WHAM you feel like crap and can't seem to get to feeling good again.
Just remember you are not alone, there are many many suffering with wacky symptoms and wanting their life back.

Hope you can get to feeling good soon

 
Old 08-14-2003, 04:22 PM   #7
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kael HB User
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Thank you Dea, and thank you everyone.

This may sound ridiculous, but if the endo could just say - oh, yes, I see all of these symptoms in severe cases and it's your thyroid - we will get it fixed - I'd be so much better. I HATE not knowing what has caused this in my body - because my greatest fear is that it will never go away and I will have to live like this forever.

Okay - there, I said it ... I'm a wimp!!

Thanks again guys - I really need you right now!

Hugs,
Kael



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Old 08-14-2003, 04:47 PM   #8
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I am so sorry. I know that doesn't help, but I am. I have suffered kind of like you for 4 years. They have told me it is bi-polar disorder, but right now I am waiting on my first thorough thyroid test results. I know you probably do not want to think about sleeping pills, but when I go through periods of time when I cannot sleep, my psychiatrist always says, "I can't get you well, if I can't make you sleep." You need some relief from your suffering.
I am so sorry. Sometimes I would tell my doctor, I don't want to kill myself, but I don't want to live anymore. Please don't be insulted by this suggestion because I am not trying to say that there is anything at all wrong with your mental state, because there is not. But when you suffer so much that it becomes unbearable, you might want to consider seeing a psychiatrist that might be able to ease some of the anxiety that you are experiencing. Some people are totally opposed to this approach and I respect that opinion, but you can only suffer so much before you start to feel that you will go crazy.
My heart goes out to you and I hope we both find relief soon.

 
Old 08-14-2003, 06:08 PM   #9
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Divermon HB User
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I think I've heard of all of those symptoms as being either Hypo or Hyper, except for the dry heaves and the sores. Has anyone here ever heard of these two symptoms? I'm not sure what you mean by the rushes either.

As Dea said, with antibodies present, you can swing back and forth from Hyper to Hypo, and even mix symptoms at the same time. I'm just now begining to understand this out with myself, as I just found out I have antibodies present.

Hopfully you have had all the appropriate testing done on the thyroid levels - reverse, etc. to check for out of the ordinary things, like hormone resistance.

Hey, I almost sound like I know what I'm talking about! I don't.. I'm not the one to ask about these things, but I do know there are cases like that.... but you've talked with Meep, and I think she knows about those things.

Well, I'm happy for you that you found this board. Sometimes it really helps. I hope you feel at least a bit better soon. Hang in there. You got better before, you will again.
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Old 08-14-2003, 06:10 PM   #10
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kael HB User
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Thanks Sam - you're a sweetie. My mental state honestly only suffers so severely when I'm very sleep deprived. Otherwise, I am an incredibly strong woman and cope very well. I can relate to what your psychiatrist says about sleep and healing!

Do you actually take anything for sleep? I am so concerned about things being addicting or me being messed up when I quit taking them.

Thanks again for your caring and support. I appreciate you!

Kael

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Old 08-14-2003, 06:17 PM   #11
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kael HB User
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Divermom - thank you too - just read your post. You guys are the greatest. The dry heaves and stomach upset is actually something a few others have mentioned on this board, and sometimes I think it's more related to my lack of sleep than anything else. The tongue sores???? Who knows.

The rushes are like this feeling (and it's physical) that starts kind of around the pit of my stomach and surges upward - sometimes I literally wonder if it isn't my adrenals releasing cortisol?? Okay, now I am starting to sound crazy! It only happens between about 5 am and 7 am.

The only test I've had for cortisol was a fasting blood draw in the a.m. with normal ranges being like 8 - 25 and mine was 23. I thought that was pretty high, but who knows. My endo wants to do the injection test for the adrenals - I've just put it off until next month because if someone else sticks me with a needle or x-rays me one more time, I'm gonna scream!

Anyhow, thank you again.
Hugs,
Kael

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Old 08-14-2003, 06:43 PM   #12
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Divermon - Believe or not, Meep is a boy/male/man. As nice and helpful as he is, the natural assumption is that he is a woman(Hey I don't mean anything bad about guys).
Kael - I have had the "rushes" and it is adrenalin. I finally figured it out when I went to the dentist and he accidently gave me epinephrine(I'm highly sensitive to it) and re-created those awful feelings I'd been having. The good news is that in spite of two steps forward and one back since I went on Armour; those rushes have almost completely went away. Hang in there. IWL

 
Old 08-14-2003, 07:05 PM   #13
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kael HB User
Talking

Oh My GOD - you guys are the best!!!!!!!!!!!!!!!!!!!!!! And I mean it. You give me so much hope.

I LOVE YOU - THANKS!!!!!

Kael

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Old 08-14-2003, 07:33 PM   #14
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Kael,
I can't take anything that is addictive because in addition to all the problems I have, I also am a recovering alcoholic. Some antidepressants (also used to treat anxiety and panic) or antiseizure drugs (used for bi-polar)also help with sleep. These are the ones I take. Unfortunately, some of them also have great little side effects like weight gain. Right now, I am on a great one called Topamax that causes weight loss. But I'm not sleeping real good on this one. Can't have it all, I guess. I used to binge eat, but now I almost forget to eat, which really caused me to question my thyroid, because I began eating almost nothing and still lost no weight, then got a 2 month bout of diarreah and still lost no weight, plus all the other symptoms that I always have.

[This message has been edited by samrhett2 (edited 08-14-2003).]

 
Old 08-15-2003, 08:05 AM   #15
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Hey Roni -

I just wanted to say that it sounds like your poor mom has had it really rough - but don't assume because her health is challenged in many ways that your's will be too.

My mom is on so many prescription meds I can't count them on two hands, but I, on the other hand, have never had more than thyroid issues.

Our belief about ourselves has a definite impact on our health. Keep believing you are healthy - and now that I've said that to you, I am going to practice what I preach!!! ( I used to be a hypnotherapist!!)

Hugs,
Kael

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