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very frustrated can anybody help?


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Old 09-13-2008, 11:25 AM   #1
heather feather
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very frustrated can anybody help?

I am new to this so im just going to tell my story.I was diagnosed in July of 2007 with severe hyperthyroidism(graves disease) i ignored it for about 2 months and didn't do anything about it until i ended up the E.R. with a heart rate of 200 beats per minute needless to say i was on the verge of a heart attack.They controlled my heart rate by giving me meds and it came back down to a normal level they said this was caused from my thyroid condition.After that I went and seen a endroconologist who put me on metoprolol a beta blocker to control my heart rate and also a med for my hyperthyroidism ( i can't remeber the name) after about 3 months of that i decided to have radioactive iodine done to kill part of my thyroid because i heard it was easier to control hyperthyroidism than what i had,and also the meds for hypo. were more natural for your body than the meds for hyper.After i had the iodine done they took me of all my other meds i went for about a month not taking anything when i went back in to get tested to see what my tsh level was at was at 0.75 wich i was nowhypo. so they put me on 0.05mg of levothyroxine which wasn't enough so they up my dose until they found the dose that was right for me it took about 7 months before they did they now say my thyroid is at a normal level and that i should be feeling great but thats were the problem comes in i feel horriable. My tsh level is at 1.76 i take a 0.088mg of levothyroxine one day and a 0.1mg of levothyroxine the next.My symptoms still have not went away, my heart still races out of control which they have done a procedure on me were they went through my groin and put a camera up to my heart to check to make sure my heart is ok everthing came back fine but yet my heart dose not seem fine it still beats way to fast.I also am really tired all the time, very moody(either very angry or crying),feel very disconnected from myself like im going crazy i can't concentrate like im in a fog all the time, i have no sex drive, my muscles feel like they are gone very weak and my legs are very sore all the time and want to give out it feels like my muscles are constantly flexing this makes them very tired feeling.I have dizzy spells to were it feels like im going to pass out.I get hot flashes alot or im freezing. I have trouble sleeping sometimes,or i have a hard time just getting up.all and all i just feel awful. So what im wondering is dose anybody else feel like this my big concern is my heart im wondering if anybody has this issue.I am going to get my hormones tested on the 19th of this month wondering if that has something to do with the way i feel considering that my thyroid is normal.I really have no clue what is going on with me so hopefully someone will read this and have some answers for me to help get me on the road to feeling better.If my thyroid is normal than why am i still having all these symptoms?

Last edited by heather feather; 09-17-2008 at 03:15 PM.

 
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Old 09-13-2008, 11:44 AM   #2
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Re: very frustrated can anybody help?

Hi Heather! So sorry that you feel so horrible! You are not suffering alone. There are so many of us with this chronic miserable condition. I am one of them. Sounds like you were hyperthyroid and they had to burn it out which then made you become hypothyroid. I have been told that been hyper is more dangerous than hypo because of the racing heart. Now it may take awhile to get you leveled out. The thyroid is a delicate thing.

I became hypothyroid 3 and half years ago. I have had to up my medication once and yesterday I got tested again and have a feeling I will have to up it again. I feel like crap too! Losing hair, very tired, clumsy, fuzzy brain, aches and pains, no energy. I even shut my finger in our safe door the other day and about took off the top of my finger. This morning I got another finger caught in the washing machine door and hurt it. I am just not like this. But when my thyroid is not working everything just falls apart. I even get acid reflux, diarrhea and constipation. The systems just work as slow as a turtle.
The nurse tld me yesterday not to worry because there is plenty of leeway with medication levels. I worry about what if I have to keep upping my meds until there is no more "up". Then what?? She reassured me there would be plenty of room to give plenty of the levothyroxine.

No one in my family has this. I get angry and I cry and shout out "why me?". It really slows me down. I am angry that I gained 30 pounds that I can't get off and I have always been trim and pretty. Now I feel fat and ugly and all washed up. I look in the mirror and see a fat gal losing her hair that feels terriable. I don't know what to do. I work out, eat well and work 3 jobs. Sometimes life sure ain't fair. I just have to remind myself there are other people suffering from things much worse than I.

Just keep taking care of yourself. Getting second opinions. And try natural supplements. I do that too. Hang in there! Here for you! Take care!

 
Old 09-13-2008, 06:22 PM   #3
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Re: very frustrated can anybody help?

gosh i wish i had some good advice for you. i'm so sorry you're going through all this. it sounds awful! have you told your doc that although your numbers look good (have you seen your lab results yourself? always get copies!) that you feel awful and are having all those nasty symptoms which sound hypo to me. perhaps you need another med increase. obviously something needs to be addressed. 10-1 its your thyroid, assuming you never had these problems before your graves/hyper started kicking up.

its very difficult living with thyroid disease until things get evened out. i hear your frustration! take care

 
Old 09-14-2008, 03:55 AM   #4
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Re: very frustrated can anybody help?

Hi,

You need to get hold of your test results - TSH, FT3 and FT4. You can see how out of balance you are with those levels. Post them here, there are a lot of knowledgeable people on this board that can give you some good advice.

 
Old 09-14-2008, 08:21 AM   #5
heather feather
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Re: very frustrated can anybody help?

thanks for the advice i don't know if they have ever checked my t3 or t4 levels they have only told me about my tsh levels.I'm going to try to get in to the doctors tomarrow. I am having a really hard time lately i feel worse than i did when i was first diagnosied.My anxiety of this is starting to take over i don't know how much more i can take it feels like my body wants to curl up in a ball and die. I am only 31 years old and the thought of living like this forever is unbearable. And the worse thing is that everbody in my family thinks this is all in my head so i have no one to talk to cause nobody understands so thanks again for repyling.I will post my results when i get them.

 
Old 09-14-2008, 09:05 AM   #6
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Re: very frustrated can anybody help?

Quote:
Originally Posted by heather feather View Post
thanks for the advice i don't know if they have ever checked my t3 or t4 levels they have only told me about my tsh levels.I'm going to try to get in to the doctors tomarrow. I am having a really hard time lately i feel worse than i did when i was first diagnosied.My anxiety of this is starting to take over i don't know how much more i can take it feels like my body wants to curl up in a ball and die. I am only 31 years old and the thought of living like this forever is unbearable. And the worse thing is that everbody in my family thinks this is all in my head so i have no one to talk to cause nobody understands so thanks again for repyling.I will post my results when i get them.
heather make sure it is the FREE t3 and FREE t4 that they draw. there is a difference between the 'frees' and the plain old t3 and t4.

people on this board understand the nightmare of thyroid dysfunction and are here to listen when our friends and families cant deal with it anymore.

let us know how you do/.

 
Old 09-17-2008, 03:28 PM   #7
heather feather
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Re: very frustrated can anybody help?

I'm not sure ifi m doing this right on how to respond and add new things so hopefully this will get to somebody.I went to the doctors the other day and got my test results back.They say everything is normal and i should be feeling great. My tsh is 1.21,my free t4 is 1.23 and my t3 is .66 all in the normal range.So nowthey are telling me that my symptoms are all in my head or it is all anxiety or depression does anyone have either one of those and if so could you please tell me what your symptoms are from them.I am going Friday to get my estrogen and progestrogen tested to see if those are out of balance if there not they want to put me on meds for anxiety/depression which i don't feel like that is what is causing my symptoms so if anybody has any advice on what to do or if have similiar side effect please let me know.My symptoms are rapid heart race,legs cramping/very weak,either sleeping to much but latley haven't been able to,no sex drive,really bad pms,very emotional,cloudy/disconneted feeling,can't concentrate ect. please help thanks.

 
Old 09-17-2008, 04:30 PM   #8
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Re: very frustrated can anybody help?

I'm not sure about that .66 t-3 number. my ranges are (1.10-2.0)if this is the case you are LOW in t-3. You might not be converting the t-4 to t-3. You might suggest to the doc adding some Cytomel. A t-3 reading like this explains why you feel like crap!

 
Old 09-17-2008, 05:14 PM   #9
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Re: very frustrated can anybody help?

thanks for the info that is very helpful.Are those numbers for free t3 or just t3 he only tested my t3 said i didn't need to test my freet3 even though thats what i told him i wanted tested.If those numbers are just for t3 than i will call my doctor tomarrow and ask him about it what is that other medication you are talking about.Also do you know what t3 is i don't really understand the t3 and t4 stuff thanks again i really appreciate it.

 
Old 09-18-2008, 05:56 AM   #10
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Re: very frustrated can anybody help?

Quote:
Originally Posted by heather feather View Post
thanks for the info that is very helpful.Are those numbers for free t3 or just t3 he only tested my t3 said i didn't need to test my freet3 even though thats what i told him i wanted tested.If those numbers are just for t3 than i will call my doctor tomarrow and ask him about it what is that other medication you are talking about.Also do you know what t3 is i don't really understand the t3 and t4 stuff thanks again i really appreciate it.
Hi Heather, Do you know what your antibody levels are or were.

 
Old 09-18-2008, 12:43 PM   #11
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Re: very frustrated can anybody help?

Yes Heather, this is for the total t-3 not the free. The t-3 is more the metabolism part of the thyroid hormones...like your energy level, your heart, your brain, your bowels, these are ruled mostly by the t-3. I was originally diagnosed with t-3 toxicosis. My t-4 was still in range but the t-3 was elevated beyond my lab range. Don't be surprised if your doc says no to the Cytomel, I've heard others say some docs don't believe in it, but you could try. Most think the t-4 supplement is all you need, but not always true, some do much better with an addition of this, so I hear.Maybe you just need more of the levoxyl or whatever you're on for hypo. Usually docs don't give you enough of this either, afraid you'll go hyper on it.

 
Old 09-18-2008, 01:21 PM   #12
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Re: very frustrated can anybody help?

thanks again but i guess i missed understood what the doctor said about my t3 level it is 66 not .66 he said normal range is 80 - 220 i asked him if this was maybe still to low consdiering its on the low side end he said it should be fine so once again i don't know.If you have any more info it is much appreciated thanks again.

 
Old 09-18-2008, 01:23 PM   #13
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Re: very frustrated can anybody help?

thanks for replying i have no idea what my antibodies are.Nor do i know what antibodies to ask to be tested maybe you can tell me.Thanks

 
Old 09-18-2008, 03:13 PM   #14
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Re: very frustrated can anybody help?

they are autoimmune antibodies referred to as TPO levels or thyroperioxdase. not sure how to spell it. This means if your TPO levels are high, this usually indicates Hashi's because your thyroid is being attacked. You may or may not have symptoms from this.( I did for 3 years) my T3 and T4 are all still within normal range but I am doing well with the treatment.

 
Old 09-18-2008, 05:12 PM   #15
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Re: very frustrated can anybody help?

Heather,
If your range starts at 80 for t-3 and yours is 66, it's STILL low, isn't it?It's out of the range, it's not normal. Discuss this at your next visit or if you continue to feel bad.Also ask if they did antibodies testing on you.Tpo and Tg for Hashi's and for Graves it's Tsi.

 
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