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bluelady 04-06-2004 01:20 PM

what's wrong with me?
 
I'm now going into my 7th week on 50mcg of Levothroid and I'm still waiting to feel "well". Most days I'm barely getting by and others are so awful that I think I'll lose what's left of my mind. I'm having anxiety(?) most of the time and I feel like I'm on speed or something, yet I can't get the lead out of my butt. I've been sweating profusely especially at night when trying to sleep so I throw the covers off only to start freezing and the cycle repeats all night long. Last night was a particularly bad one. I was up until well after 3am going back and forth between hot and cold. This morning I felt like total garbage so I didn't take the Levo just to see if it made any difference but I can't tell because my sinuses are so congested that my head feels like it's going to burst. So much for my experiment!
I thought I would be feeling better by now and I'm beginning to think that something is mentally wrong with me because I don't. I feel badly for my poor family for putting up with me through all of this turmoil.
I had labs done in Feb before I went on the Levo but I don't know what they were. (I know my Tsh was 3.4o in Jan) I had labs again a few days ago but I won't know those results until Thursday when I see the Endo again.
Since my Tsh wasn't really out of range I keep wondering if I really need Levo to begin with? I have a non-toxic, multinodular goiter. Is that a good reason to take thyroid meds?
I know you guys can't really help me without the labs but I feel so terrible right now that I needed to tell someone. I pray that the Endo will give me some encouraging news when I see her in a few days. If she can't/won't change my med or something I don't know what I'm going to do. I've been feeling so bad for so long that it seems like there's no light at the end of the tunnel (if you'll excuse the cliche). I am so sick of feeling sick. I just want to be myself again.
Thanks for letting me whine. I'm so grateful that you're all out there willing to share advice, exchange info and mostly for support. God bless you for being there.
Thanks for listening to me again,
Bluelady

sladedog 04-06-2004 04:06 PM

Re: what's wrong with me?
 
well for what it worth I'm in the same damn boat- although I don't have the night sweats thing. I too had only a slightly elevated TSH (4.8) and the Synthroid I took did nothing to help my symptoms (most annoying being anxiety and spaciness)- so I sitched to Armour a week ago and might actually feel worse now. I too am considering stopping all together. I went to a holistic doc who thinks my thyroid is fine and that my real issue is my kidneys- claims that I have "leaky gut" syndrome- could be on to something but who knows anymore!! I just wanted to let you know that you're not alone- just reading your post made me feel better- knowing that others can relate makes a world of difference to me!! Hope you feel better soon!!

opalfire 04-06-2004 04:27 PM

Re: what's wrong with me?
 
[COLOR=DarkRed][FONT=Comic Sans MS]Hi.......sorry to hear that you feel so poorly. Sorry to hear that your doctor is still working off the TSH. As it's only a pituitary response to the T4 level in your body, it's a useless tool to adjust thyroid medication.
Please ask to have a Free T4 and Free T3 done. The results should be in the mid-upper normal of your local labs ranges. You're probably on too low a dose which is worse than not taking it. When your dosage is too low, the pituitary gland thinks that your body has enough T4 to work on and stops putting out so much TSH to kick it into gear....and as you're getting too little for your needs....you feel worse!
I can't say it enough....get copies of all your labs at every turn so that you can monitor what is working for you and what isn't. Doctors are not gods....obviously you're not his only patient....and usually they only get a quick glance as to the last visit, never mind what else has been going on. Point these things out to him. If he gets insulted, he's not going to help you anyway! Time to find another doctor!! If you're in the market for another doctor, call the office nurse and ask if he treats hypothyroid with the TSH and Synthroid, or does he use the Free T3 and Free T4 with whatever thyroid medicine it calls for. Saves on the visit that might not agree with you anyway...not to mention the money!
Keep us posted! :wave:[/FONT][/COLOR]

miper 04-07-2004 05:18 AM

Re: what's wrong with me?
 
Sladedog and Bluelady,
Opal is right....your dosages are probably too low. When I first started Armour, I started at 1 grain and I thought it wasn't working for me because I felt worse than taking nothing at all. After a bump or two, I'm stabled out at 2 grains and 50 mcg of Synthroid. Please give it a chance before you go off of it. Oh, and just to let you know, when I was diagnosed, my TSH was only 1.4 or something like that, so the TSH is not what you want to look at. You want to pay attention to your symptoms and your free numbers.

bluelady 04-07-2004 07:03 AM

Re: what's wrong with me?
 
[QUOTE=sladedog]well for what it worth I'm in the same damn boat- although I don't have the night sweats thing. I too had only a slightly elevated TSH (4.8) and the Synthroid I took did nothing to help my symptoms (most annoying being anxiety and spaciness)- so I sitched to Armour a week ago and might actually feel worse now. I too am considering stopping all together. I went to a holistic doc who thinks my thyroid is fine and that my real issue is my kidneys- claims that I have "leaky gut" syndrome- could be on to something but who knows anymore!! I just wanted to let you know that you're not alone- just reading your post made me feel better- knowing that others can relate makes a world of difference to me!! Hope you feel better soon!![/QUOTE]

Hi Sladedog,
I'm sorry to hear that the Armour isn't helping you. You must really be bummed out. How is the Armour making you feel?
I'm really hoping that my labs are all out of whack and that's why I feel this way. If this Endo doesn't do something tomorrow besides reccomending I see a shrink I'm stopping the Levo and I'll never go back there again. I don't know what I'll do after that but I'll figure something out. Maybe my GP can help me.
Thanks for your post---it made ME feel better! I hope the Armour will start to agree with you soon. Please keep me/us updated on your progress. It's a shame that we have to be in this boat at all!
Good Luck,
Bluelady

bluelady 04-07-2004 07:33 AM

Re: what's wrong with me?
 
[QUOTE=opalfirejucika][COLOR=DarkRed][FONT=Comic Sans MS]Hi.......sorry to hear that you feel so poorly. Sorry to hear that your doctor is still working off the TSH. As it's only a pituitary response to the T4 level in your body, it's a useless tool to adjust thyroid medication.
Please ask to have a Free T4 and Free T3 done. The results should be in the mid-upper normal of your local labs ranges. You're probably on too low a dose which is worse than not taking it. When your dosage is too low, the pituitary gland thinks that your body has enough T4 to work on and stops putting out so much TSH to kick it into gear....and as you're getting too little for your needs....you feel worse!
I can't say it enough....get copies of all your labs at every turn so that you can monitor what is working for you and what isn't. Doctors are not gods....obviously you're not his only patient....and usually they only get a quick glance as to the last visit, never mind what else has been going on. Point these things out to him. If he gets insulted, he's not going to help you anyway! Time to find another doctor!! If you're in the market for another doctor, call the office nurse and ask if he treats hypothyroid with the TSH and Synthroid, or does he use the Free T3 and Free T4 with whatever thyroid medicine it calls for. Saves on the visit that might not agree with you anyway...not to mention the money!
Keep us posted! :wave:[/FONT][/COLOR][/QUOTE]

Opalfire,
When I had labs done in Jan they didn't do FT3 but they did FT4 (1.2/ lab R-0.8-1.8). Is that in the mid-upper normal? I don't know if they checked the F's in Feb before the Levo. When I went to have labs done last week, the dr only had the Tsh and T4 checked off on the lab slip. I checked the T3 box myslef. I'm gonna here about that I'm sure.
I hope you're right about about my dosage being too low. It's very encouraging to think that I may simply need a dosage adjustment and I CAN feel better. I pray this is the case and that the Endo will interpret my labs/symptoms correctly and treat me appropriately. I also hope she'll take into consideration that maybe the Levothroid simply doesn't agree with me and that another medication may be worth a go. I'm concerned that she's going to tell me that my labs are "normal" and that since I don't yet feel well I don't have a thyroid problem and go see a shrink.
I'm going to take your advice and point out the things you've mentioned to her. I'm also asking for copies of all my labs. If I don't get any satisfaction, I'll go elsewhere.
Thank you for your sound advice,
Bluelady

bluelady 04-07-2004 07:38 AM

Re: what's wrong with me?
 
[QUOTE=miper]Sladedog and Bluelady,
Opal is right....your dosages are probably too low. When I first started Armour, I started at 1 grain and I thought it wasn't working for me because I felt worse than taking nothing at all. After a bump or two, I'm stabled out at 2 grains and 50 mcg of Synthroid. Please give it a chance before you go off of it. Oh, and just to let you know, when I was diagnosed, my TSH was only 1.4 or something like that, so the TSH is not what you want to look at. You want to pay attention to your symptoms and your free numbers.[/QUOTE]

Miper,
Thanks for adding to the encouraging news from Opal. When I get home tomorrow from the Endo I'll post my latest labs. I hope you, Opal and some of the other veterans here will be kind enough to help me interpret them. I've got my fingers crossed.
Thanks,
Bluelady

sladedog 04-07-2004 09:07 AM

Re: what's wrong with me?
 
Miper-
After being on the Synthrid for about 8 weeks I went back in and had my numbers done again- TSH dropped down to about 1.6 (range .5-4.5) and my free T4 was smack dab in the middle of the range. My endo said "well you numbers look great now so if you're still having symptoms it's not from the thyroid". She agreed to change me over to Armour to give it a shot. You said that you were diagnosed with a pretty low TSH- where was your FT4- and how did you manage to get a doc to treat you?? Anytime I mention having a FT3 test the doc just rolls her eyey- says that there is no proof that FT3 matters regarding symtoms- all that matters is FT4 and TSH. I've tried another endo but he was worse. I'm basically left to figure it out on my own- that's why I'm asking so many questions!! And by the way- how do you take your meds- I was told yesterday that I should take 1/2 of my Armour after breakfast- 1/2 after dinner. I've been taking it first thing in the a.m like Synthroid. Thanks for all your help!
And Bluelady- my biggest complaint, what really started me down this path, is a constant feeling of lightheadedness, spaciness, brainfog. I alos get anxiety/panic attacks a times. So I can relate to the whole "see a shrink" attitude. When I first went to a doc without even taking my blood or giving me a physical he sent me on my way with a rx of Zoloft- took it once and had a horrible panic attack. Alot of drs don't seem to care anymore- just gotta do your homework and hope that you can figure it out for yourself!! Good luck--

opalfire 04-07-2004 04:22 PM

Re: what's wrong with me?
 
[QUOTE=sladedog]Miper-
After being on the Synthrid for about 8 weeks I went back in and had my numbers done again- TSH dropped down to about 1.6 (range .5-4.5) and my free T4 was smack dab in the middle of the range. My endo said "well you numbers look great now so if you're still having symptoms it's not from the thyroid". She agreed to change me over to Armour to give it a shot. You said that you were diagnosed with a pretty low TSH- where was your FT4- and how did you manage to get a doc to treat you?? Anytime I mention having a FT3 test the doc just rolls her eyey- says that there is no proof that FT3 matters regarding symtoms- all that matters is FT4 and TSH. I've tried another endo but he was worse. I'm basically left to figure it out on my own- that's why I'm asking so many questions!! And by the way- how do you take your meds- I was told yesterday that I should take 1/2 of my Armour after breakfast- 1/2 after dinner. I've been taking it first thing in the a.m like Synthroid. Thanks for all your help!
And Bluelady- my biggest complaint, what really started me down this path, is a constant feeling of lightheadedness, spaciness, brainfog. I alos get anxiety/panic attacks a times. So I can relate to the whole "see a shrink" attitude. When I first went to a doc without even taking my blood or giving me a physical he sent me on my way with a rx of Zoloft- took it once and had a horrible panic attack. Alot of drs don't seem to care anymore- just gotta do your homework and hope that you can figure it out for yourself!! Good luck--[/QUOTE]
[COLOR=DarkRed][FONT=Comic Sans MS]Dear Sladedog......I feel so bad for you to have to go through such a trial!
Please, please find another doctor! We've thrown potatoes at other people telling us about their docs who don't respond...or say you need a shrink!
:blob_fire :blob_fire :blob_fire :blob_fire
How's that? Will that help?
Seriously....the method I've been recommending is to call each doctor's office you have listed and ask for the office nurse. Ask her if that doctor treats hypothyroid with TSH and Synthroid only, or does he treat it with the patient's symptoms, Free T3 and Free T4's, and whichever thyroid medication is indicated with those lab results, including the use of Armour. If she/he says only TSH and Synthroid....hang up and dial the next number. This way you'll save your money and your time waiting for that appointment only to find out it's not going to work for you! It's that important!!
Keep us posted and we'll try to keep you cheered up until you find someone. Don't despair.....You CAN feel good again!
Judy[/FONT][/COLOR]

opalfire 04-07-2004 04:23 PM

Re: what's wrong with me?
 
[QUOTE=sladedog]Miper-
After being on the Synthrid for about 8 weeks I went back in and had my numbers done again- TSH dropped down to about 1.6 (range .5-4.5) and my free T4 was smack dab in the middle of the range. My endo said "well you numbers look great now so if you're still having symptoms it's not from the thyroid". She agreed to change me over to Armour to give it a shot. You said that you were diagnosed with a pretty low TSH- where was your FT4- and how did you manage to get a doc to treat you?? Anytime I mention having a FT3 test the doc just rolls her eyey- says that there is no proof that FT3 matters regarding symtoms- all that matters is FT4 and TSH. I've tried another endo but he was worse. I'm basically left to figure it out on my own- that's why I'm asking so many questions!! And by the way- how do you take your meds- I was told yesterday that I should take 1/2 of my Armour after breakfast- 1/2 after dinner. I've been taking it first thing in the a.m like Synthroid. Thanks for all your help!
And Bluelady- my biggest complaint, what really started me down this path, is a constant feeling of lightheadedness, spaciness, brainfog. I alos get anxiety/panic attacks a times. So I can relate to the whole "see a shrink" attitude. When I first went to a doc without even taking my blood or giving me a physical he sent me on my way with a rx of Zoloft- took it once and had a horrible panic attack. Alot of drs don't seem to care anymore- just gotta do your homework and hope that you can figure it out for yourself!! Good luck--[/QUOTE]
[COLOR=DarkRed][FONT=Comic Sans MS]Dear Sladedog......I feel so bad for you to have to go through such a trial!
Smack-dab in the middle range is nothing when you don't feel good at that range.....and yes, the T3 is that important that you're still feeling lousy. Don't you wish he could walk in your shoes for a day?
Please, please find another doctor! We've thrown potatoes at other people telling us about their docs who don't respond...or say you need a shrink!
:blob_fire :blob_fire :blob_fire :blob_fire
How's that? Will that help?
Seriously....the method I've been recommending is to call each doctor's office you have listed and ask for the office nurse. Ask her if that doctor treats hypothyroid with TSH and Synthroid only, or does he treat it with the patient's symptoms, Free T3 and Free T4's, and whichever thyroid medication is indicated with those lab results, including the use of Armour. If she/he says only TSH and Synthroid....hang up and dial the next number. This way you'll save your money and your time waiting for that appointment only to find out it's not going to work for you! It's that important!!
Keep us posted and we'll try to keep you cheered up until you find someone. Don't despair.....You CAN feel good again!
Judy[/FONT][/COLOR]

sladedog 04-07-2004 05:28 PM

Re: what's wrong with me?
 
thanks again-
still wondering how you all take Armour- all at once or broken into 2- I took 1/2 this a.m and I think I felt a bit better today- although I'm starting to feel run down again- it's 5:30- just about time to take it again I guess. I'm really curious about how everyone else had to "adjust" to Armour...

miper 04-08-2004 03:53 AM

Re: what's wrong with me?
 
Sladedog,
My TSH was 1.237 when diagnosed and I didn't have Free T4 done when diagnosed, I had just regular T4. The reason I was diagnosed was because of my antibodies, upyake and scan, and symptoms. When taken off meds. to do the scan, my TSH did climb, but then he put me on Armour and now I'm at .045.
Opal was right. Maybe you should find another Doctor. I just found a new one myself who is an angel. He tests everything and goes by symptoms, not just TSH. They are out there, you just have to search until you find the right one.
The way I take my Armour is half in the morning before I eat or drink anything (but water), then the other half about 2:30-3:00 in between lunch and dinner.

bluelady 04-08-2004 06:45 AM

Re: what's wrong with me?
 
[QUOTE=sladedog]Miper-
After being on the Synthrid for about 8 weeks I went back in and had my numbers done again- TSH dropped down to about 1.6 (range .5-4.5) and my free T4 was smack dab in the middle of the range. My endo said "well you numbers look great now so if you're still having symptoms it's not from the thyroid". She agreed to change me over to Armour to give it a shot. You said that you were diagnosed with a pretty low TSH- where was your FT4- and how did you manage to get a doc to treat you?? Anytime I mention having a FT3 test the doc just rolls her eyey- says that there is no proof that FT3 matters regarding symtoms- all that matters is FT4 and TSH. I've tried another endo but he was worse. I'm basically left to figure it out on my own- that's why I'm asking so many questions!! And by the way- how do you take your meds- I was told yesterday that I should take 1/2 of my Armour after breakfast- 1/2 after dinner. I've been taking it first thing in the a.m like Synthroid. Thanks for all your help!
And Bluelady- my biggest complaint, what really started me down this path, is a constant feeling of lightheadedness, spaciness, brainfog. I alos get anxiety/panic attacks a times. So I can relate to the whole "see a shrink" attitude. When I first went to a doc without even taking my blood or giving me a physical he sent me on my way with a rx of Zoloft- took it once and had a horrible panic attack. Alot of drs don't seem to care anymore- just gotta do your homework and hope that you can figure it out for yourself!! Good luck--[/QUOTE]

Hi Sladedog,
Just wanted to tell you that I went down the Zoloft route too---for over two years!! My GP was smart enough to check my thyroid before prescribing Zoloft, Tsh was supposedly "normal" at that time. Never did know the exact number so it could have been a high normal for all I know. Last winter I started on a downward spiral despite an increase in the Zoloft dosage. The higher dose made me worse so we changed over to Effexor. Bad move. That was even worse yet! The side effects from going off the Effexor were so bad that I thought I was having a stroke. My GP wasn't available and I was sent to the dr on call. Thank the good Lord!! She's the one who sent me for more labs and an ultrasound. See, I had this lump in my neck and I kept bugging everyone about it until someone listened. (Btw, the lump is still there and it's not TD-related. The Ent they sent me to is still trying to figure out what it is!) That's how this whole TD odyssey began for me. I've been off the AD's since December of 03 and feeling the same on them as off. And now the Levo isn't helping either! So frustrating! Hang in there, I'm with ya! (Insert HUGS).
Bluelady

peggles0224 04-12-2004 06:37 AM

Re: what's wrong with me?
 
I, too, back in 1995 ended up on levoyxl. Everyone told me I would feel great once I got it into my system... NOT! I told my doctor... I was still having trouble functioning... sleep deprivation. He said, we'll send you to a neurologist (at least he heard me) and if that doesn't pan out, we'll treat you for depression. I gave him on look and I was ******. Depression... I think not, but at least he was willing to listen.. Turns out............... I had sleep apnea. All the weight gain... Me sleeping on my back. Although I still struggle with it today. I didn't turned the corner for me.


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