need advice badly im frustrated dont know whats going on???
hello all,back in jan 07 i found out i was hypo my tsh was 8.45 i started on levothyroxine 25 mcgs took it for 6- 8 weeks i switched drs because my gp for over a yr would not check my thyriold levels my psychiatrist found it ,ok went back to gp long enough to get started on meds as i didnt have another dr yet then went to gyn he started me on synthyrold 50 mcgs took them till march i was seeing a new dr then but for some reason he had left but hes back but i didnt know where he went so went to a new internal my tsh was 7,11 he had me back on levothyroxine 75mcgs ok i started them ariound the first part of april or the end of march somewhere around there ,well i started getting upper arm pain then after awhile it got worse the dr gave me darvaset for the pain but it didnt help ,ok now here its june and my chests started hurting i feel hyper not hypo i have bad bad diarea stomach upset cant sleep not even with xanax i do but i wake about 5 hrs later i feel like im dead tired which iam im having the depression again but my last tsh was 1.5 then this time it was 2.68 i dont feel good at all on the synthyrold or levothyroxine i feel horrible i tried a 25 a 50 and 75 and everytime i take one i feel the symtons again i see a endo this thursday my dr i have now says im to come back for tsh in 6 mos he says im within range well i sure dont feel like iam or i just cant take the levothyroxine or the synthyrold my chests beats fast on the meds if i dont take the meds i dont need a xanax as much im kind of upset with hubby cause hes not understanding me and yells because im sick i told him i cant help how i feel so what does this sound like to any of you please please reply back anyone as iam so desperate and dont know whats going on if i dont take the meds i feel better but i fall asleep in evening and get crabbiness and cant get a full nights sleep.my internal only checks the t4 and tsh i called today and he said more or less come back in 6 mos this is so unreal i have no idea whats going on and i feel like im a burden because im sick i just want to be better .so looks like i need to find another dr for my other probs the endo will take care of my thyriolds but i also have high blood pressure which i take b/p meds for and panic disorder .there for awhile i was starting to feel good then in april is when all the symtons started this dont make since can someone please help me understand what may be going on here.also my hands and feet hurt and tingle.i also have fainting spells which could be the panic ...
vickie
Re: need advice badly im frustrated dont know whats going on???
hi vic
i am soooooooooo sorry you are having these problems, and not having your husband understand is also something i am having to deal with too.
my husband thinks just like a lot of doctors thats its all in my head, and we have lots of rows.
i am still having severe problems myself, and i also dont know what it happening to me.
i cant help with any answers, but i am hear for you
Re: need advice badly im frustrated dont know whats going on???
oh vickie hugs to you and yes we do have alot of patners on the boards who dont understand us its hard for them as they cant help us vickie i hope you sort thsi out i think you should stay on a low dose and have your cortisone test you knwo i think that could be making it much harde r have you had one hun?? if not then please rule it out its a reason why you get hyper feeling even though you are in range and you will never get on with the thyroxine till you get it sorted alot of us on the boards have it and have to up out thyroxine in baby steps now you know that a simple blood test a year ago could have helped you this is the same its a simple test you can even get it on the net for about 40 dollars rule it out vickie then you can go down the more rare avanues love from kat hugs to you litle vickie buddiexxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx xxxxxxxxxxxxxxxxxxxxxxxxxx
Re: need advice badly im frustrated dont know whats going on???
I so feel your pain! I have the exact same symptoms as you do plus more. lol.. The pain in the upper arms and in my wrists and hands and fingers is so intense that I can hardly move them. And no matter what I do the pain does not go away... And the chest pain has been with me for a year now. It has eased up a little but some days I feel it creeping back. I get allot of lower back pain as well and leg and ankle pain. So I totally can relate to what you are going thru.
I would say find a good dr. One that YOU feel comfortable with and is willing to treat you by your symptoms and takes the extra step to make sure u are well. And as for the hubby well I don't have any advice there as I am single. LOL... Just take care of yourself because you need to feel well to get on with a productive life!
Maybe if some of the NON thyroid disease people in our lives would just for one day go without any sleep, food, water or any nourishment at all and then run a marathon and then they MIGHT be able to get some kind of insight of how we feel most days!
Re: need advice badly im frustrated dont know whats going on???
I understand what you are going through.....my life was great until my thyroid problems started. People who are healthy just don't know what we have to cope with every day.
Hugs from Jenni
Re: need advice badly im frustrated dont know whats going on???
thanks to all of you wonderfull people for replying im still the same but im taking the synthrold untill i see endo and she will check everything is what they told me plus she will listen to my symtons as well for 1 i believe that dumb dr who i was seeing dont know much about certain stuff first he thought i was bipolar that turned out i wasnt i told them today well then why is my chests hurting and he wants me to come in for a follow up appt what for to get more money most likely .my sister said 12 yrs ago when she first found out she had thyriold hypo her gp dr sent her to a endo and the endo checked everything for her and the piturary gland if thats how you spell it and all her tsh tt3,4 and ft3,4 among other stuff as well and shes doing great now shes had it 12 yrs i only just found out in jan 2007 and yes the people who dont have this illness has no idea what we feel its a horrible illness. but i know someday i will get better and yes before i got this illness i was so healthy i worked ,tanned ,went places and was never scared and never had panic attacks like i do now and kat yes im going to ask if she will check my cortisone as well i hope shes good and hubby is ok today but like sometimes when i faint he says things like im so sick of this and i told him well how do you think i feel i hate it worse because im having the illness he has high b/p but never goes to the dr and yes the xanax before was helping it does some but not like it was and another thing is i think my dr had me on too high a dose maybe not i dont know alls i know is i dont feel good at all im getting a little better today i been up since 7am and went to bed at 1am lastnight and i havent fell asleep i feel hyper kind of but my labs keep saying hypo my front of neck hurts at times and now im starting to get leg cramps like those charlie horses or if i walk i feel my legs hurting but i will keep all you wonderfull people posted and if i didnt have this board to come to id go nuts as i have noone to talk to about this my other family members dont even understand my mom is diabetic and i dont know how she feels so she should be more supportive about this as well but she dont my hubby does drive me to the drs though since i cant drive due to my fainting and thats getting worse and worse im going back to my old internal medicine dr who i saw first then he left but what happen was he was fighting with his boss or something over the building hes useing over money but i have heard very good stuff about this dr i never would have changed drs if he hadnt have left but i didnt know what had happened and i needed a dr for my thyriolds i go thursday at 3pm and i will keep all you great people posted you have all helped me so much at times i feel like im going crazy iwill find a dr i trust and the first one i went too he was very good he listened to all my symtons and spent 1 hr with me not many drs do that the other dr im no longer going back to spent like 10-15 mins and was out the door and he kept wanting me to go to inpatient to see if i was bipolar get real its not bipolar its thyriold where he went to medical school who knows he may be ok for other probs but not with thyriolds my mom sees a gp and so does my sister but of course they both saw a endo first .............im feeling a little better but not alot i hope i can sleep tonight see this is what i was doing long before i even knew i had thyrold i thought i had it but wasnt sure and that dr refused to test me over a yr and believe me im in the process right now of suing him the attorney generals office had me sign a paper to get my records he done me wrong and made me suffer when as he could have done was run that simple little test ,kat how do i find the cortisone tests on the internet for $40.00? well i will be back i havent been on for awhile but i just wasnt feeling good still dont but im a little better so maybe the synthrolds may work i have to wait and see so far my chest isnt hurting as bad but the xanax helps with that but i only take when i have too.and if i take them so be it i have to have something to calm me down and the xanxa does help me sleep what little i do get but once im on the right dose and the right meds and they find out whats going on im hoping i can get my life back i told my hubby lastnightthat this illness takes away your life ,your energy oh and another symton i have is no appetite i cant eat either i eat a few bites and dont feel like eating i do drink pepsi and water and 1 cup pf coffee i try to eat but no appetite .i will be back soon love to you all and thanks so much for responding back i really need all of you right now as i know all of you need support as well thats what theses boards are for .sorry foir the long post..............
hugs to all vickie
Re: need advice badly im frustrated dont know whats going on???
Well Hi All ,i Cant Take The Synthrold Either I Cant Handle The Side Effects My Shoulders Hurt Plus Upper Arms Stomch Pain Headaches Diarea,among Many More So Untill I See Endo Tomottow Im Not Taking It And Yes The Dr I Was Seeing Is Stupid Im Not Going Back To Him I Have To Find A Good Dr To Treat My Symtons As Well And I Been On Levothyroxine Since Jan Only Took Synthrold 1 Month In March So I Shouldnt Be Having Side Effects Now Should I Before This Last One My Tsh Was 1.5 Then When The Pain Got Too Hard To Tolerate I Stopped First I Tried A 50 Then A 25 And I Even Cut A 25 In Half And Still Felt All The Symtons So Im Not Taking Anymore Till I Find Out Whats Going On And As For The Chests Pains I Still Have Them But Not As Bad Off The Meds And My Xanax Dont Even Help As Much I Never Get A Fullnights Sleep I Wake Up Around 7am And Go To Bed About 1am I Dont Feel Like Doing Much Of Anything But Before This I Was Starting To Feel A Little Better But Not Totally Then Boom All These Symtons Started I See Endo And I Hope Shes Good I Hear She Is Plus My Old Dr The One Before This One Was Good He Checked Every Part Of My Body My Hands Feet Throat Ask Me All Kinds Of Questions And I Dont Have My Co-pay But He Said Come In Anyway Now Thats A Good Dr I Go To Him July 5th After My Endo Im Asking The Endo To Test Everything Possible And My Hands Hurt My Feet Burn My Legs I Just Totally Feel Terrible So Guess They Need To Find Me A New Med And As For Me Being Under Stress Over All This Yes Iam Cause I Just Want To Be Me Again And Feel Good .
Love To You All Vickie
Re: need advice badly im frustrated dont know whats going on???
vickie
i really feel for you, i too want to feel normal again, i must admit since i have been on thyroxine my muscles have really ached much more than before i started it.
i now have to put up with backache too.
i know how you feel, lets hope things will get better
Re: need advice badly im frustrated dont know whats going on???
thanks andrea,im going to endo today at 3pm im hoping she can tell me whats going on i know theres a meduication out there for me not everyone can take synthrold /or levothyroxine thats why they make so many everyones body is different like my sister can take levothyroxine shes been on it for 12 yrs but she had to go to a endo in the beginning too that poor girl she went to her dr gp 12 yrs ago and told her dr she thought she had mono she lost so many jobs cause she couldnt get up mines the oppicite i wake too soon and only get about 5 hrs of sleep but then im tried in evening my sister was 39 when she got thyrold not sure if surgeries brings this out or not but i had the ovary surgery and my sister had colon surgery she has colon cancer but right now shes in remission our father died from colon cancer but my sister had it long before my dad got it my sister was 29 .but im sure praying this endo helps me cause i hate feeling like this i have been off and on the meds for about a week but i cant take them if it makes my chest hurt plus stomach ,diarea,shoulder pain upper arm pain among so many more but when i dont take the meds all those side effects go away .........
wish me luck i will post what i find out once i get results iam aloud to have copies arent i from the endo???
vickie
Re: need advice badly im frustrated dont know whats going on???
hi vickie, u are definitely loved by many on this board. i surely am one to give you support too. i'm on ur boat too. i haven't been feeling too well myself...i'll talk about it on another post. i'm sorry to hear thaty our going thru all this. and since i've been on this board, i've been praying for all of us to get some kind of answers. i mean, i'm tired of this rollercoaster ride with doctors, symptoms, and everything. i'm really frustrated. but amidst all this, i do pray...and hope that we do solve this. i'm on 100 mcg of synthroid with all NORMAL levels. but i have hashi's and they are hoping to lower down my antibodies with a HIGHER DOSE of synthroid. imagine how i'm feeling? cuz i do feel hyper too. oh well...u are in my prayers....as well as all of us supporters.
Re: need advice badly im frustrated dont know whats going on???
hi everyone sorry i havent got back to you all but my new endo who is just wonderfull she listened to my symtons and checked my labs and said just by my symtons and labs i was WAY OVER MEDICATED she switched me to levoxyl starting me on the 25mcgs since i havent been taking any meds for a week but i couldnt well started them today and so far all the side effects i had before are gone except for the waking early and sleeping alot but i did this before i even knew i was hypo shes going slow too she has me on 25mcgs and i have 5 more refills she went by both my symtons and the labs and said my symtons alone told her i was on too high a dose plus said that i was having side effects from the levo/synthrold said it meant i couldnt take that brand ,so far no chest pain no arm pain the only thing i feel so far is just the sleeping oh well in no time i will be back up like before ,my b/p was normal and i do take b/p meds it was 120/80 my pulse was 66 i couldnt believe it thats the lowest its been in a long time i dont feel bad either i feel alot better then before since starting the new meds i get new labs 1st week of aug and i see her again on aug 9th she ran the tsh both t3 & 4 ft 3 & 4 plus the tpo not for sure what that one is but loretta told me about that she said by my symtons she knows i dont have graves or hashi's but she was very good and i really like her i believe i finally found a good dr to help me with my thyrold she told me shes going to get me feeling better she also said i was no where near my normal range by labs and my symtons and my other dr told me i been within normal range for mos and she couldnt believe he had me on 75mcgs plus didnt understand why he didnt see the signs of overmedicated by my chest hurting along with headaches diarea stomach pain among more she knew right off the dose was way too high and shes now starting me out slow to make sure im on the right dose plus the right meds sorry cant post my labs yet not till after the 1st week of aug but i will keep you all posted on how i feel.i have great faith in this woman and shes real young too like late 20's or early 30's and the whole staff was excelent i really like this place my other dr allready knows and he shouldnt get mad because i went there because he knew i told him i wasnt feeling good he thought it was all in my head first he thought i was bipolar ,i think he just down right thought i was crazy told my hubby i look on the computer about the thyrold too much so i think im worse then iam i said no i do research and theres nothing wrong in doing that its my body and i have to live with this illness for life so i try to find out everything i possibly can about the illness .
hugs to all of you wonderfull people and yes im still praying for everyone of you who have to suffer with this illness like me its horrible when my sister had it i never knew much about it i had no idea that it made you feel so horrible but it does .......................BIG BIG HUG TO ALL OF YOU.
vickie
Re: need advice badly im frustrated dont know whats going on???
Good for you Vickie - I am so glad you found a doctor to listen to you and that is willing to listen to your symptoms and try to figure this all out. It is wonderful that you are feeling so much better. I am sure the tiredness will turn around - takes a week or two for the meds to kick in. But thank God - been praying you would find a good doctor - and it sounds like you have. Take care and keep me updated - ok - soon we will be screaming about how good we feel - on a beach in our swimsuits - remember? Loretta Hugs to you.
Re: need advice badly im frustrated dont know whats going on???
hey loretta great to hear from you and yes iam very very happy i finally found a good dr who listens to me and not just my labs shes very good and she knew when i told her my symtons and from the labs said i was no where near my normal range and that other dr told me to have my next tsh in 6 mos some drs are just so dumb ,and guess what i havent fell asleep so far tonight and i went back to bed this morning for a couple hrs because i wake early again but that too will pass im allready feeling better on this new medication all my symtons have gone no more pain in my arms or dizziness or diarea i still have some panic still but the endo said that sometimes people get panic with thyrold and that sometimes it goes away and sometimes it dont she said some people live with it all there lives and i did have the panic long before i got the thyrold and i do have the xanax so that does help ,but i only take as i need them .and yes we both will celebrate when we finally feel good again .along with all the others who suffer this horrible illness ,i just hope this never happens again but i kept telling that dr i wasnt feeling good and he said well you been within normal range for mos if thats so then why was he having me keep coming back into his office so much its called MONEY ,i went a week without my meds cause i couldnt take the chest pains and the endo even said he should have known that was a side effect along with being over medicated even the drugstore told me that but he wouldnt change my meds nor lower them so i went to a endo and im so glad i have alot of faith in this woman and i know shes going to help me feel good again and thats what she told me too said she will get me back to feeling great again she may be young but she knows her stuff too i felt so happy when we left her office and sorry if my old dr is mad but its my body and he wasnt helping me none i will go to him for my b/p meds and my xanax and any other medical prob i may have .and hubbys job is gettig new insurance bluecross/blue shield hope its better then what we have now.how have you been loretta i saw in one of your posts where you wasnt feeling too well i will PRAY AND PRAY AND PRAY for anyone who has this ugly illness its horrible and sometimes it seems like forever before we feel good again.but like you said we will look back on this and say how did we ever make it through this tough time we went through but i have alot of faith in god and yes we all will get better some get better sooner then others and some take longer but in the end we will be ourselfs again .how do you like the 1mg xanax? it helps me alot hope they help you as well.
hugs i will be on tomorrow im allready feeling better and i only started the new meds today.
vickie
Re: need advice badly im frustrated dont know whats going on???
Wow I am so happy for you and that you have found such a good doctor. It will be interesting to see your lab results...did they show you were being overmedicated as in a hyper result?? Glad that you are feeling better!
Hugs from Jenni
Re: need advice badly im frustrated dont know whats going on???
Jenni, no she said she knew i was overmedicated just by looking at my labs i took all my labs with me from the start jan to the last one and by my symtons she said she could tell right then i was way over medicated and said i was no where near within my range plus she said everyone is different and said our bodies feel good at different ranges like one person may feel good at a 1 and another may feel good at a 2 or higher and some may feel good below the 1 each one of us has differet bodies the ranges say normal but even when i was at 1.5 which said i was within normal range it wasnt right for my body cause i wasnt feeling good at 1.5 plus other things that was causeing it was the levo/synthrold wasnt right for me why it waited 6 mos to do it i dont know ,for one the drs kept trying to up me way too fast this new endo is going to take me slow and thats the way they should do it till they find the right dose for me plus the right meds this is day 2 and guess what i was able to fall back to sleep this morning after i took my pill and im allready starting to feel better on this medication i dont feel as tired and i hope it keeps up i know it takes time im like starting all over again but i dont have the symtons i had with the levo/synthrold my arms no longer hurt im not getting headaches as much nor the dizziness and im not falling asleep in evening as much i did the first day and i feel like cleaning my house today i told hubby please be patient with me i will get better it just takes time and he said he will try to understand but if he could have my illness just once then he'd know what i felt the endo also told me that my deep depression and moodswings and the crying spells i had was from being hypo and when i took the other meds i was on i would feel real sweaty then cold now i dont feel that so im glad i didnt end up taking a anti depressent i hate them for one i tried so many and none ever helped me im not crabby either i was on the other meds but at times im crabby but who isnt .and i dont need to go to no mental ward either my other dr wants me to see a psychiatrist but i dont need too he must be a dr who just guesses at what he thinks is wrong if and when i do finally go into menopause and i feel i need something for my hormones then i will talk with my gyn but so far i feel fine my breasts hurt only once in awhile but thats about it i see gyn july 30th for my pap and mam.im 45 and i dont feel like iam i still cant go to the stores just yet and i have to be in a wheel chair at the drs till my falling down stops if that goes away i could deal with the aneity now the panic i hate it scares me makes me cry and then i fall.but im going to church tomorrow the first time in yrs but like i said i have alot of faith in god and he will be at my side helping me along i truly believe hes the one who sent me to that endo .i wikll be back to the boards later on if my kids dont beat me to the computer school dont start back till around aug 15-20th they are good kids but they live on this computer.
love to you all ...................vickie
Re: need advice badly im frustrated dont know whats going on???
I just hope and pray you continue to feel better; I feel terrible trying to increase to 125mcgs and I feel overmedicated. My kids love the computer too....I have to queue for a turn here!
Hugs from Jenni
Re: need advice badly im frustrated dont know whats going on???
i will post my labs as soon as i get them i dont get them done till the first week of aug and yes i will for sure to let all of you know how im feeling on thuis new med i did fall asleep in evening again but its normal i did this when i first started the levothyroxine too and iam only on 25mcgs for now but all this will pass and once i get to my right dose and i hope this is the meds for me i will be back to myself again i miss being me its been allmost 2 yrs since i had this illness but i suffered a yr with it not knowing i had it i thought maybe i did but the old gp i was seeing refused to test me he was treating me for panic and depression and had me on ugly effexor xr 75 mg and thats the worst anti d ever i wont ever take any more anti d's ever again for one they never helped plus trying to come off them are horrible .but i will keep you all posted so far im feeling pretty good other then the falling asleep but i dont fall asleep as much as before and i dont feel exhausted either now thats pretty good if you ask me so far i love this med levo didnt even do this for me i couldnt take it after 6 mos but if i wasnt over medicated i prob could have but it just didnt work for me
hugs vickie
Re: need advice badly im frustrated dont know whats going on???
you know vickie what im going to say i think you lack of being able to tolerate the meds is so you have low cortisone i pray you get that endo to do it this is what hapens are classic symptoms of low cortisone hun i hope you get this sorted little vickie love always form your mate katherine hug to you vikie and i hope you get better i think this as they let it run for a long time and it draggged it down to far this happend to me a swell when i first went on it and i had to come off i dont think it has anything to do with different brands you ve to go bck up in very babay steps if you ve low ortisoen i cant give you addis on here but if you ****** cortisone testing kiyts it is right at the top of the page ok it will cost £80 wich is about 40 dollars tHATS posibility alot of us have thsi problem lorretta is on me and alot of us have adrenal fatigue wich can get better if you look after your self and dont get stressed and get to the rigth tsh for some of us it can take a bit more treatment love to you vic katxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx xxxxxxxxxxxxxxxxxxx xx
Re: need advice badly im frustrated dont know whats going on???
kat ,on my lab sheet i put a x on the cortisone so they will test it i hope they dont get mad that way i will know if mines low when the labs come back and its low then i did the right thing i dont think they'd be mad i did the same thing with my old dr when he wasnt checking my t4 i put a x by it too and they didnt even relize it so shes doing TSH,FT3&4, ANTI TPO,CORTISOL,is that spelled right is that the one your talking about? so i did it myself so be it im paying for it .she prob wont even know what tests she had run and if she does i will just say the lab ran it for me .im feeling better this is day 3 i still get sleepy and tired some but thats normal .i will get better you wait and see and yes i need to up my dose slowly not fast like before because when they did it threw me into hyper symtons ,but so far im feeling better i dont have the arm pains or stomach but i take a protonix or prevacid for that only one though not both at same time amd im a little dizzy but i also had that at the beginning too but the dr i saw back then the gp kept telling me it was severe panic well i think its the thyrold causeing it cause when i was at 1.5 i wasnt dizzy only a little so all this will go away it takes time my sister whos had hypo for 12 yrs said it took her a whole yr before she started feeling good its only been 6 mos so far for me since i found out i even had it but i did suffer a whole yr before that which was that drs fault and thats why im in the process of sueing him ...............let me know about those test i just posted and can you explain what they are for like what are they looking for in the ft3 and 4 and the anti tpo.and the CORTISOL too thanks
love from your dear friend .......vickie
need advice badly im frustrated dont know whats going on??? 
is the same its a simple test you can even get it on the net for about 40 dollars rule it out vickie then you can go down the more rare avanues love from kat hugs to you litle vickie buddiexxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx xxxxxxxxxxxxxxxxxxxxxxxxxx
Re: need advice badly im frustrated dont know whats going on??? 
