I want to live!

Oh God! I have never posted here so much in my life... I am just at my wits end.... I cant take this c.r.a.p anymore. I am so depressed today! Crying a lot, taking my moods out on my boyfriend and just over all wish I was dead at times (dont worry not sucidial) Just keep saying to God to put me out of my misery...

I took my bad ood out on my b/f today and he totally did not deserve it! I feel so bad about that now aswel! I am so frecking annoyed that Im going through and that its so unfair. Jez like theres murderers and abusers out there living the life of luxary and then theres people who try to lead good law abiding lives like us and WE suffer...... Im sick of it! I feel like screaming!
AAAAAAAHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!!!!!!!!!!!

[ChitChatNine]

You can scream with us and take it all out on and with us .. because we've been there and done that and still doing it sometimes!!!!!

You can PM me anytime .. I'm online a lot.

Can you PM me and refresh my memory on your history .. you can yell and scream all you want via PM and I am always there to listen and never, ever judge.

C~

[oldie]

scream into your pillow. It does no harm at all. Go with you b/f to the woods an scream while he holds you. You'll end up laughing. BUT, meantime, hang on. This passes. There'll be good times ahead

[Jennifer1987]

Im trying to hang in. Its torture though! 21 years of age and I feel like a 90 year old! Its so horrible! My boyfriend is so supportive to me, I have him warned that I could blow at any stage!

I think if I screamed Id never stop!

[amy430602]

Jennifer, I've so been there.  :(  It took until I was 25 for me to get up the balls to go and actively seek help.  It also took three kids and a failed marriage and a relationship worth keeping to motivate me.  I forgot how bad it would get sometimes until I read this post.  Good luck!  I wish only the best for you, and you find your happiness somewhere!  It's out there...  I promise.

[Barb135]

We're all here and we've all been through some form of this at one time or another.  If you can get your b/f to understand that this isn't a personal attack against him, that will help....  

You can PM me anytime you want also... and scream as loud as you want.... I'm a long ways away from you, but being a good share Irish, I can be pretty strong willed and I'll make every effort to cover you.  

Sending you "cyber hugs" -   hang on sweetie, it will get better.......
Praying for you.......

[azqtpies]

Oh Jen,

I hear your pain, I have slipped back to hypo hell, with hyper symptoms as well, my depression has gotten really bad and my anxiety is through the roof all I do is cry when I am alone and sometimes when I cant control it when others are around. I have developed bad parnoia just cant stop thinking sometime bad is going to happen.

I feel like I sream inside my head I am SOOOO tired of this rollercoaster! I went to a reg doc for  the anxiety he treated my like I was crazy basically laughed at me and told why did I not have my whole thyroid out!!!!!!!!!!!! WHAT like i needed that, yeah  that would make the hell much better! QUACK... I too wish someone would just smack me in the head, stop my inner misery! I certainly dont want to die, that is my worst fear !!! but I understand exactly what you say!.. I dont know how much longer this can go on before I feel like they can just lock me away ! its ***** bad this has been a almost 3 yr ride and I want off! I  hate rollercoasters..=)

There are other here like myself who share your pain, email anytime I always need  someone to talk with myself that understands. Hugs

Kelly

[Jennifer1987]

Im thinkin that if this doesn't inprove that I want to get my thyroid out. I think it would be a decision Id have to think about but if it stoped the levels from going up and down and the anxiety to go then I might consider it.

It seriously has been hell... Im just so fed up. want to be happy....

Thanks to you all, I needed that pick me up.
I just feel so alone with all this. Cried so much yesterday, my eyes were killing me last night!

[Smilerdeb]

Hugs Jennifer xxx

Been where you are so many times before RAI and felt like he\\.
I too .....felt like you. I even told my Doc that if this was life I didnt want it......told him I was going to get the butcher to cut my thyroid out too!
Seriously though...there is light at the end of the tunnel.

I cant give you advise about Hypo as I was hyper before RAI and even though I am doing great a year later, there has still been 'hiccups' along the way.
Be kind to yourself....learn all you can about yr condition and if all else fails, then research all treatments available.
Take yr time to research as there is NO going back once its done.
Sometimes I would think like you and then a few days later, I'd be fine.
Dont rush into anything permanant unless yr levels are so unstable and they cant regulate them.
THEN look at other options.
The thyroid regulates so many things in yr body and once its gone, you have to get yr meds right, your levels right and THEN 'Tweak" your meds.
Please dont think that if you have yr thyroid removed that it will all 'go away'...as it doesnt straight away.
You still have to work hard at yr levels, you still go hypo, you still go hyper.
I am one of the lucky ones so far and feel great a year after RAI and TT BUT.....
I will never have the old me back, I will never be 100% and this is something you too would have to deal with.
Just because I'm ok without a thyroid, doesnt mean you will be.
Think about that carefully.
Hugs My Friend xxxxx

[Jennifer1987]

I will have a good long think about it, I promise. I just think that casue I was kinda diagnosed with hashimoto's (will know next testing) that it will eventually be gone and I will have no thyroid anyway! So why put myself through all this, why let my levels go up and down the way they are. I know having no thyroid is no walk in the park, but I think its better than the life I have now. Anything is better than this he// hole! I need to see a lil bit of the onld me...

I want to be able to wake in the morning with out worries, anxiety, strangh thoughts and depression. I can take the tiredness adn pains and that but the mental side is killing me slowly!

I actually have myself convinced I have ocd or somethink, even though all Im having is weird thoughts, but thats the way my brain is working. My therapist said I dont have OCD that Im under so much stress and depression is causing thoughts and anxiety.

And I know Im rambling now so Im going to put a full stop here.

[Smilerdeb]

Your not rambling...you are just giving a better picture of what you are going through.
I hate to advise people to have permanant treatment unless they really are going through He\\ as it takes a lot of hard work afterwards to achieve wellness.
I wont lie to you...yes the journey has been tough after RAI but nowhere near as tough as it was prior to RAI.

I just feel that in order for you to get those levels right afterwards, dont expect miracles, be prepared for a lot of hard work and only have permanant treatment IF the going is tough and not getting any better.
I dont advise anyone to have permanant treatment until they are 100% sure and then if they decide to do it, make sure you know everything there is to know about the 'afterwards'.
It IS hard but I found (as I said ) nowhere near as hard as it was prior to RAI.
Talk to others who have had permanant treatment with Hashi's.
As I said ...I have Graves and that may be easier to control after RAI.....I really cant comment on that one but there are others here who can.
Be kind to yourself :)

[dani2776]

All I can say is I am glad I found you!  I have exactly the same thought process as you.  I too have Hashi's and am batteling to the extreme!  I have asked for my thyroid to be removed as well to stop the maddness but they keep preaching the same story about the surgery leaving this scar.  I DON'T CARE ABOUT A SCAR, I want my life back.  I have 4 children who I am not doing a very good job at raising because of all this.   Like you I don't understnad why they won't take it out if it is just going to die anyway!  All the doc's want to do is keep giving me anti-depressants and believe me if I could handle those drugs I would gladly take them but I can't.  Hang in there and know you are not alone as there are many days I just wish I would die too (but not suicidal).  This is no way to live!

[Jennifer1987]

Im just getting so freaked out cause I dont see the old fun me any more. When all this started I din't realise that 9 months down the road Id be as bad as ever! My troath is sore today, and I feel like sleeping for Ireland! Im going to see my doc. on firday and see what he says. I dont care about the scar either a bit of Bio-oil and that will be gone in no time, well barely visable anyway!

I can see where smilerdeb is coming from, once its out, its out, no going back.. BUT that brings me back to the, its going to die anyway bit.... Thats what makes me think what the he//, Il get over the scare if my quality of life improves!

I got offered xanax or something and refused,I want to bet this myself. If I can get through this I can get through anything! And I can relate to the, I want to die but aint suicidal bit too!!! This is no way to be spending out days on this planet..

If the anxiety would just float off into outher space and be gone..Id be happy!


I don't e=ven know if therapy will help cause my thyroid wont level out!

[dani2776]

You live in Ireland?  I am sooooo jealous, I want to go there so bad some day.  Just living there should make you feel better (ha ha).  Anyway are you on thyroid meds?  What were the results of your most recent labs.  Just a quick question for you.  Do you ever get dizzy or lightheaded with all your thyroid problems?

[Jennifer1987]

Yup, lately very dizzy at times. annoying more than anything! Lately Iv been very thirsty (any connection).. Im on 100mcg of eltroxin.. Do you get a sore throbbing troath?? like a coaking sensation. Driving me mad these days.

Yup live in Ireland... great weather these days, But don't worry your not missing anything special!! Where u from??

[dani2776]

I am constantly lightheaded almost like I have had to much to drink! Very nerve wrecking and almost impossible to function some days.  It's funny you mentioned being very thirsty.  I just had something to drink with my lunch and had to have someone bring me something else 30 minutes later because I almost feel dehydrated!  How long have you been batteling these symptoms?  Do you have Hashi's?  I too have the throat problems.  My doctor doesn't feel anything but I am getting an ultrasound on Wednesday.  I feel like someone is constantly choking me and it HURTS!!  As far as me I live in the good old USA in Southern Indiana where my allergies are about to kill me too!!

[Jennifer1987]

Id love to go to the US, my friends are gone over working for the summer.  Im so Jealous! Its raining where they are though, Chicago! lol

Lately Iv been very thirsty! My doc tested me for diabetes last friday, he did a urine test but never told me any result, so Im sure its ok.. Jez I hope so, cause they are knida connected! Im dreading all the things that could happen from this... I wouldn usually care about these things only its getting to bad now!

Ya I feel as if Im dehydrated, or my mouth is dry or something. I never told my doc about the soreness in my troath, he will think Im a hypocondriact or something!

Im considering getting it remover. My thyroglobulin levels are high, so we think I have hashimotos just haven diagnosed it yet, will know next testing! Its 7pm here and Im fit for the sack!

[dani2776]

Well I hope you find your answers, good luck and keep me posted!  I am like you afraid to bring up any more symptoms because they look at you like you are crazy!

P.S. I am from Chicago born and raised!!  I have only lived in Indiana for 8 years now.  

[Jennifer1987]

Ya me too. Let me know how your scan goes, PM me or something.... Il keep u posted to.. Going to try and convince him to remove it!

Cheers

[Smilerdeb]

Hello Ladies....word of advice.
BEFORE deciding on a TT...look at BOTH options.
Look at Thyroidectomy and its 'for and against'...parathyroid damage etc.
And RAI.
This is what you should be both doing at the moment to know for sure which treatment you really want.
I would hate you both to have Thyroidectomys then say..."I didnt know it could damge the Parathyroid glands!".
Look at every FOR and AGAINST in both aspects.
Read my journals on RAI.......you may get some insight into it.
Then read Redheads journals on TT.
This will make your mind up by researching all you can.
This is the most important thing of all.
You have both decided PERMANANT treatment...now look at the pros and cons of both.
Good Luck :)

[dani2776]

To be honest even if I have decided on a permanent treatment, which I haven't no one seems willing to do it.  Surgery is by far the last thing I want to do but I want my life back!  I am tired of crying all the time and some days having to rely on family and friends to help care for my children because I can't.  I use to be the house where my 2 oldest sons friend's would ALWAYS want to be because I had so much energy and was so fun!!  Now I cringe thinking about having another child in my home.  The anxiety part of the Hashi's is also about to kill me!!  My endo told me yesterday that the swinging from hyper to hypo should only last a few months and now I should be all hypo.  Well I'm not so what's the problem????  Everyone always says that it WILL get better but I am having a real hard time believing it!

[Jennifer1987]

If I could get rid of the anxiety I would not have it removed, but it doesn't seem to be going anytime soon.. I REALLY don't care about the physical stuff, but the mental side of it is going to kill me. Even therapy isn't doing any good (yet, only had 2 sessions)... I would rather not have it out but if push comes to shove its gone!lol....

And Thanks so much Smilerdeb for all your advice and guideance! This is the type of info I want to gain and need to make my decision....

Anyone with Hashismoto's and HAD anxiety???
Did it go away by itselp or did you get the thyroid removed???
My doc. hasn't of yet spoken of treatment until he does the next testing!

What a nightmare!

[Smilerdeb]

I have had both hyper and hypo and most believe that you only get the anxiety with HYPER.
That is a MYTH.
You get anxiety on both ends of the scale.

I found though that when I was Hypo, an increase in Thyroxin eased it within days (dont forget I am super drug sensitive).
So where others go for 6 weekly bloods, mine have been 2-3 weekly as the Thyroxin works so fast , just as the anti-thyroid meds did too.

I went hyper to hypo within 2 weeks on anti-thyroid meds and it was sheer he\\ so know where you are coming from.
Hugs

[nissah46]

Like Smilerdeb said, you can have lifelong complications from the surgery.  I had no choice but to have surgery, but my parathyroids were removed (2accidently) and damaged (2). I just got a call 10 min. ago from my GP, saying my calcium levels are too low.  They are at 1.78, and should be 2.09 to 2.69.  I get muscle spasms and it can be dangerous if the levels go too low.  I spent a week in hospital from it. If there is a way to deal with your condition without surgery, you might want to follow that route.  Good luck.
Trish

[Smilerdeb]

Its really that persons persoanl choice whether to go TT or RAI.
In my eyes, you are damned if you do and damned if you dont...so to speak.
I originally wanted TT but the choice was taken from me.
Now I am glad I had RAI first.
But as I have said many times..that was my personal opinion.
If I DID have a choice, I wouldve kept my thyroid as it makes so many organs in your body function.

When my TT was done , it was keyhole by Epidural from under the armpit and the thyroid was the size of a pea 3 months after RAI.

Think carefully (yes I'm a pain for keep stipulating this ) about any permanant treatment as the problems do not go away with 'one pill a day' as the Docs tell you.
It takes months and months of 'tweaking' the meds and its basically a new ball game starting all over again.
A positive attitude is a major factor in wellness.

[hope4thegoodstuff]

I had total thyroidectomy, but I had cancer in my thyroid.  No choice really there.  At least not in my eyes.  It was several weeks before I was put on meds, but once there, I lost a lot of the anxiety.  I am a bit light headed at times still.  Not outright dizzy, just a bit off balance. I also don't have the really high highs or the really low lows.  I used to get very hyper and then within minutes drop completely into the doldrums.  It was awful, so most of that is gone..I have hashis - hypo.  

If the meds would have worked for me and I didn't have to deal with the cancer, I'd of fought to keep my thyroid.  I still have it in my head that I need that.  : )

My surgery was a bit different than smilerdebs.  I have a 3 inch scar on the lower edge of my neck right up front.  My thyroid was extremely large and very hard according to my surgeon and it was very well attached.  I did not have RAI until after surgery...it was to kill off any remaining thyroid pieces that may have still been attached to hopefully keep the cancer from spreading.  
for those of you who use metric system scar is about 7.5 centimeters...I think.  
its 25.4 mm to 1 inch.  

[Jennifer1987]

Permanant treatment isn't the way I WANT to go, but I feel to keep what left of my sanity I HAVE to do it... I am the moodiest person ever lately, its like Im PMS'in all the time LOL...

Anxiety is a killer, I hate it... The thoughts it causes ia unreal.

Will the anxiety leave after a while if I keep the thyroid???
It will eventually die off, so will it be easier to just have it just removed??? And not go through this up and down and anxiety all the time bits......

I wsnt to cry again! :( Its SOOO hard!!

[Smilerdeb]

None of us want permanant treatment Jennifer but if it means quality of life...so be it.
Sometime it can take months for the thyroid to become non functional but sometimes it can also take years (sorry to be the bearer of bad news).
No matter what you decide, everyone is behind you here supporting you.
Hugs x

[Jennifer1987]

I have been thinking that its going to take years so you haven't given me bad news.. I like the months bit though lol...

Im going to see what my doc says on Friday... Il have a lil chat with him....
I have this constant trobbing feeling in my troath... Annoying so Im going to be presistant....

[dani2776]

I too feel just like Jennifer1987.  If it's going to die anyway why not take it out?  Both ways it will be nonexistant and nonfunctioning.  I don't know how long I have had this wonderful Hashi's but I started having problems  about 5 years ago and then after a year and a half they subsided but after the birth of my last daughter (who will be 2 next month) I have had nothing but probelms again.  Numerous doc's tld me I ws just depressed and I finally received my Hashi's diagnosis in April.  I am still trying to find the right med for me (not Synthroid!) and the right dose.  My endo seems very aggressive with med increased and I CANNOT tolerate them so we starting over again at 25mcg with a new med.  I have soooo many symptoms I am starting to think I have something more serious wrong with me.  I just had and MRI of my brain because of all the dizziness and equilibrium problems I am having.  I was convinced that I had MS but of course the scan was negative!  I am jumping from MD to MD trying to find answers and not having any luck.  All I do is scream at everyone that I love and then just sit there and cry all the time.  I HAVE NO QUALITY OF LIFE!!!!

[Jennifer1987]

My B/F was at the recieveing end of my mood last night... The poor thing, I feel so bad! I was apologising all day 2day! I hate it so much. Im losing my mind.

I don't really care about the scar, I think thats why docs don't do it.

At the end of the day, its me and not my doc who has to deal with this.. Im just another number on his sheet.. he gets to sleep well and get on with things when I leave the office.. It angers me so much!

[Smilerdeb]

Have you given RAI a thought?
Both have side effects but the parathyroid glands are more than likely to get damaged with TT.
Go into every option available.
And yes I know I am going to get slammed for suggesting RAI but I say it as I see it.

If I have upset anyone I apologise for that but not for suggesting RAI.

[Venora Moonwind]

HI there.Been following the thread and I have to say I feel better without my thyroid than I ever did with. I am bi polar as well and now I know that thyroid hyper to hypo and back is alot like bi polar with the mood swings, I had a huge goiter that went sub sternal( cause I had a stupid reg doc that ignored my health complaints) and it just happened to have cancer in it.
So I dont know which came first the thryoid or the bi polar but like I said I feel better than I have felt in years.( Its been almost 3 years)
Now it took awhile to get where I am with the med tweaking and such.
let your doc know how much you are suffering. I always throught the point od docoting was to relieve the suffering( I am being tongue in cheek now as I now first hand that docs are human  fist now.lol)
Keep posting and journaling. When I was in hypohell for my RAI it did help to write out the emotions and put the depression on paper to get it out of my head.
Be good to yourself and and let us know what the doc says.
Love Venora

[Jennifer1987]

I dont know much about RAI??

Venora, when you say your bitter more now, What does that mean??? Do you feel better with the yhyroid out???

Sorry for all the questions, Im so just confused on what to do now...

[Venora Moonwind]

Sorry to take  so long to get back to you
I feel better now without my thyroid because I have got my synthroid tweaked just right finnally. My surgery was in 06 and around last summer I  started to really feel good, I lost weight 46 pounds.

Now I had to have a substernal goiter removed and it took a long time for my sternum to heal. That is part what took so long to feel better too

The other poster are right to let you know the risk of RAI and surgery. I just thought you ought to hear some positive outcome of  surgery. I dont think you ought to be allowed to suffer the way you are  but you are the one that has to gather all the information of the pros and cons. Education of your dillema will help you to make the best, informed decision possible
I am saying prayers that your suffering be ended soon.
Blessed be
Venora

[Jennifer1987]

Thanks so much. Well I pretty much have my mind made up. I cant stand this anymore and the thyroid will die eventually so it doesn't make a difference!

I know that there are pros and cons to it but I know that will be something I will have eventually anyway! So why not get it out now and save myself the hassle of the ups and downs and anxiety Im experiencing! I turning 22 in three weeks and I feel like Im 90!

I want to live my life the way I did before all of this...... I couldn't imagine living this he// for much longer..

So now my dilema i, how do I convince my doc to do it... I can opt for it can't i???
It will be my decision in the end and not his???
I didn't say it to him yet so Im worried he will refuse!

[dani2776]

When do you go back to the doctor?  If you find a way to convince him let me know.  I too am seriously contemplating it!  Today my neck hurts so bad I can't even touch it.  Swallowing and even speaking hurts as well and the pain is radiating up into my ear!!!  Does yours ever get this bad?

[Jennifer1987]

Hi dani,

Mine is a killer today. Im convinced the front of my neck is swelling. I find it hard to swallow and Im hoarse today...  It is always trobbing with pain like a pluse effect... It doesn't go to my ears but is so bad that when Im eating food gets lodged and goes down really slow... scars the life out of me... Then I get the hick ups lol...

God only knows how Im going to convince him.. But Im going to do it... Was discussing it with my mom earlier and shr thinks if its what I want then I should do it. Shes just worried about the scar!

I have to ring him tomorrow and get more blood results and will make an appointment then for some day this week.

I don't see the point of keeping it... its going to die anyway!

[dani2776]

AMEN!  It's not going to have any benefit if it's dead.  Did you ever get the results of your antibodies?

[Jennifer1987]

TPO anti were 1.something so were neg..
Thyroglobulin anti were 339 so positive.

Im worried cos thoes anti bodies are associated with thyroid cancer too.... another reason I think I shoud take it out and get rid of the antibodies.

Im so messed up now, while al my friends are heading out, Im in bed by 10 and conked.. they think Im going crazy, they're not far wrong either.

I just need some bit of me back!

[dani2776]

My TPO was over 1000!  I really don't know the signifigance of the numbers as far as numbers.  Have you thought about an ultrasound? I also worry that if anxiety is a symptoms of hypothyroid will it improve if it is gone?  

[Venora Moonwind]

print up these threads and take it to the doctor. Write down everything you are feeling and take it too. I gave my endo this website and told him how informative  and supportive this site is.
If that doesnt convince  the doc then hit him over the head with the papers.(lol)

Seriously if we arent the best advocates for our health then how can our doctors be?
They are human too even though they have been pumped up to believe they know more because they went to school longer than we "non-doctor" folks.

Jennifer, I was stationed in the UK while I was in the Air Force and I am somewhat familiar with what you have to deal with over there. I have to go through alot of the same here only mine is called Tricare insurance for military retirees. ( my hubby is the retired one)
Dani I dont what your situation is there in Indiana but afterall we are the paying customer, If you cant get the care you need from your doc then dont be afraid to to fire them and get another.I know its a pain but why not get a doc that is concerned for your care and wants the best poosible course of action for you.
you both are in my prayers.
Blessed Be
Vee
Dont give up and press till you get what you have decide is the best course for you.

[dani2776]

I have excellent insurance through my husband who is a police officer.  I do feel like my doc cares, he knows I am miserable.  Only thing we disagree on is that he wants me on antidepressants and although I have tried several I cannot tolerate them.  The other is the opinion of the thyroid being removed.  And to be honest I am confused about it as well.  My problem is I am overly sensitive to all meds and tweaking doses has been a problem.  I have had to start all over with a new med and a very low dose of 25mcg.  My endo agrees that I should feel terribe because my Free T4 is only 0.70 way too low according to him.  I am just having a hard time dealing with day to day life.  It's almost like each day brings new problems.  

[Jennifer1987]

Today at work we decided to take the young people to the beach and I was just so tired I couldn't do anything. Had to force myself to kick a ball..... Now, Im jus fit to drop! Sleep is on my mind all the time and I hate it.... BUT I would take the tiredness if I could get rid of the anxiety!

Its $ucks..

Oh and got bloods back today, neg. for glandular fever so it has to be my thyroid that is causing the pain!

I don't know, I think Id nearly cut it out myself (Joke!) lol. . . . . .

IIm afraid to suggest it to my doc.. What a wimp!

[dani2776]

Have you gotton your other labs back?

[Jennifer1987]

I don't have any more to get back! Thyroid came back 2 weeks ago (9 June).... Leveld were perfect according to doc... TSH 4.33 :o... Madness lol...

How you feeling today?

[Venora Moonwind]

I understand about the med intolerance as I am bi polar as well. I was on several cocktails of mood stabilizers and anti- depressants. I had a wonderful doctor during my 3 rd major bi polar episode that put me on my current combo of  my 2 head meds that work beautifully..

Since I got my thyroid out  and my synthroid right I have been able to reduce my head meds to the lowest doses.

Many of us here at the forum have been on head meds to help with the depression, and anxiety while going through hypo/hyper stages. That is ok . I say anything that will help you go through bring it on. During my First RAI, I had the worst depression that I had experienced since being diagnosed bi polar. I believe it would have been worse had I not been taking my celexa for the depression side of bi polar. I was starting to get my suicicdal thoughts so I kept telling myself to hold on for one more day till my RAI.

As for med intolerance , alot of time its not so much the meds as it is the fillers they use.  I take levothryroxine instead of synthroid. The brand synthroid doesnt seem to do too much for me but the levothyroxine the base hospital gives works great.

Over on the bi polar board there are many of us that have had to try different meds to see which ones works the best for us. So basically what I am saying dont be afraid of the anti depressants to get you through this. Once eeverything has stabilized for you you can wean off them. I repeat my advice of educating yourself all you can about the anti depressants and talk it over with your doc should you decide to take them.

If you have any other questions just pm or kepp posting on this thread.

Vee

[dani2776]

I was never agreeable to antidepressants but I finally gave in because I couldn't tkae it anymore.  I have tried 3 different ones and although I know that does not sound like many they have all made me VERY dizzy and had vomiting for hours as well.  I am too afraid to try anymore.  Do you think that once my thyroid is regulated the "head" symptoms will go away?  What about if I had it removed, will that help? I can handle the depression better than the anxiety.  I am so afraid to go anywhere because I don't know how I will feel or what will happen to me.  

[Smilerdeb]

I was prescribed Xanax for the anxiety (also agoraphobia for 26 years) and slowly weaned off them after being on them for a few years.
See what your Doc says as Xanax tends to take the 'edge ' off the anxiety.
It works fast (wintin minutes) and doesnt last long (a few hours) but a lifesaver when it is really needed.
I was prescribed them for Post Traumatic Stress Disorder and panic attacks.
I have probably had one panic attack within the last 12 months and that was when I swallowed the RAI pill.
Prior to that, I was averaging 4-5 panic attacks a day.
You need something to calm those nerves and anxiety down as the thyroid levels will not stabalise with stress.

[dani2776]

Please don't tell me that stress affects your thyroid because if that's true it will never stabalize!!!  Oh boy, now I have another problem!!!  I know I need to do something to help me but do you kow of anything natural that will help?  There has to be something other than drugs!!!!!

[Jennifer1987]

Yoga is excellent to help destress, and try learn some breathing exercises. I do them when I feel anxiety coming on and they help. Just takes practice!

I have not tried any anti anxiety meds as I want to fight this with out them. My doc perscribed xanax to but I didn fill it. In my own head I think if I can do it alone I can do anything! I dont see anything wrong with needing or using them at all.. Just want to keep tablets to a minimum!

Im off for a sleep now, its 5.15pm... Im wrecked!

[Venora Moonwind]

it is my opinion that once you get your thyroid regulated that your symptoms will lessen.

That is why I feel better without mine than I did with one. Mine had appearantly been out of whack for such a long judging by the size of my sub sternal goiter. ( I just tthought I was geting too fat,lol)

Love Venora

[Smilerdeb]

Stress is the biggest cause of your levels not being stable...sorry :(
Also you have an Autoimmune Disease , nothing natural is going to change that.
It may help in other ways but you have antibodies that no meds or natural products can take away.
Hashi's and Graves are with you for life.
But the antibodies usually go dorment or into remission once they have nothing to attack.
The higher the antibody level, the harder it is to stabilise your levels WITH a thyroid..sorry again :(
Usually the people who find remission are those who have a low level of antibodies.
Thats my personal opinion from what I have read and from what I have researched.

[Jennifer1987]

Ok so . . . . . . .

For or against thyroid removal???

[Smilerdeb]

That has to be your desision Jennifer...no-one can make that desision for you Hun .
All they can do is advise you and support you all the way.
Sorry :(

[Jennifer1987]

Hit me over the head and remove it please! lol....

It would be so much easier if someone else made it decision for me!

[Rawbun]

To dani and jennifer too!

Before my TT I felt the same "drunk" feeling. Glad to hear I wasn't the only one. My doctor had never heard of such a symptom before.

I had a TT because of possible cancer, which turned out to be the case. Having one's thyroid out does not solve the problems, it is just as hard to adjust the medication after as before.

HOWEVER, one one symptom that I don't have anymore is the "drunk/dizzy/lightheaded" feeling. Now I am just super fatigued, nauseous and constipated and getting fatter!

I am just a novice with thyroid replacement therapy, but already, I've seen some improvement. Unfortunately, it is not a steady improvement, more like a roller coaster that I heard will level off in the near future. I will tell you one thing-- I am going to be VERY vocal with my doctor and will not stop 'til I feel okay!

[kimmie1981]

Hello, I have been reading on this forum a little bit.  I have noticed you have been struggling to make the decision to have your thyroid out.  I will offer my exp.  I had a total thyroidectomy.  I have no part of my thyroid left and it is absolute HELL!  If I could turn back time, I think I would have refused the surgery even though they said I really needed to have it done.  I too feel like I'm 90.  My whole life has been affected, most importantly my 3 kids. My kids ask me why do I always sit on the couch and never do anything, that hurts.  I feel so lazy, but my body hurts so bad, it's hard to move.  Mood swings, depression, anxiety, weight gain/loss up and down, headaches all the time, migraines, trouble with my digestive system, don't fall asleep good even though I'm exhausted, always tired/fatigued and I could keep going.  I have recently found some hopeful info you might be interested in.  Have you ever heard of fibromyligia (fibromyalgia).  If not, got on the net and put in Fibromyligia (fibromyalgia)/Thyroid Connection.  I found out your FT3 levels have a lot to do with the symptoms.  I of course didn't know really now much about what my levels until I read these articles.  I am now in the hopeful process of getting my FT3 levels checked and getting on meds to fix that which will hopefully in turn help my systems.  I noticed a lot of doctors only worry about your TSH levels and don't test your FT3 and FT4 levels, which seems to me the more important ones.  Hope this can help a little bit. I so feel your pain, I live it day in and day out, and am having all I can do to keep going.  If I didn't have kids, I probably would have already given up.  Thank god for them

[Smilerdeb]

My FT3 levels are always 3/4 of the way from the top of the range yet I too suffer with a leg/hip ache and mine has nothing to do with the FT3.
In actual fact, I find it plays up when my TSH is up.
This has always been my 'trigger' to tell me my TSH is a little too high and needs to come down.I have never got the aches and pains when my FT3 is too low.
I think everyone is different.
Although it is good that you can post your side of your history in regards to a TT.
I would say though that if you feel like he\\, then you are not being treated properly in regards to levels and could possibly benefit from trying another thyroid medication.
A lot of people tend to 'put up' with their symptoms thinking that 'this is it' when its not.
You can have quality of life, you just have to be willing to continue until you have found it by researching and trying different medications.
It may take time (as Stella found out) but it is possible to lead a normal life after no thyroid.
I guess its up to each individual and just what their history is.
My advice seriously to anyone considering a TT or RAI would be....
Dont do it unless you really have too or unless you have no choice.
Jennifer is correct in stating that she carries the antibodies that can contribute to Cancer cells.

Thats the first thing I would be questioning the Doctor about and asking for a FNA (fine needle aspiration) to be done to rule out Thyca.
But it is also good that BOTH sides are posted here...the good and the bad.

[Jennifer1987]

I think thats what I need to weigh my options.. Pros and cons. Wil be ringing endo 2day and make an app. Or else talk to my current doc and beg him to listen!

I want thw anxiety to stop! thats all!

[Ariom63]

Sweetie I am so sorry for your frrustration. Back in 2001 I couldn't for the life of me figure out what the heck my body was going through. I actually felt as though I was loosing it.  I was so Hypo people thought I was always on some illegal drug!  Then the swallowing issues started...seemed like even when I drank a glass of water it hurt and I found it hard to do so.  After numerous testing....I had to have my left thyroid gland removed.  I was super skinny, no matter what I ate I never gained an ounce!  Let's nor forget the worst part the ANXIETY!!!!  It was non stop hell!!!!  But I did have surgery and assumed life would be back to normal. I have been taking Synthroid .50mcg's once a day since 2001.....have I noticed anything different?  Well yes...doctor did give my anxiety medications..didn't want them, but could not go on day by day feeling out of control.  I get my blood tests checked regulary which you are supposed to do to make sure your levels are correct. Well I get told each and every time...all is fine.  But I still loose tons of hair when brushing it......I hate that!  I use to have such gorgeous hair.  I maintain my weight which is good.  However I would say all in all, the surgery was a blessing....less anxiety...but when I wake up in the morning I am still bouncing off the walls....: ) and at night I am alseep by 9...sometimes I cannot even keep my eyes open until 8pm. I feel so old and crappy sometimes.  For the most part I had to have the surgery due to issues when swallowing Because they found a tumor..begnin (sorry for the spelling they really need spell check on here) You cannot even the scar...and for the most part feel better...but still not 100%...because I no longer have a clue on what better really is!  

[dani2776]

Thanks to all who have posted with their information. It does help to see the pros and cons but I really believe each person is differnet and is affected differently from the surgery.  That would be true with any surgery.  I am just soooo confused.  What Smilerdeb has said to be regrding the antibodies makes sense even though my endo believes the attack is over my ultrasound showed differntly.  This is where I am today, sitting here typing this crying so hard I can hardly see because I feel SO bad.  Mind you I am also at work! I have been dealing with this off and on for 5 years but have only just been diagnosed as hypo since February and with Hashi's in April.  Maybe if they would have listened to me years ago things would not have gotten so out of control.  Now I don't see any hope at all!

[Jennifer1987]

Dani I was the same last night, typing on here crying like mad! It seems to be a regular occurance by me now! I just feel so horrible, My throat is so sore today, Im so paranoid that its swelling and that I cant do anything about it!

Id rather be hypo than have hashimoto's cause of the hormone imbalance! Im glad everyone posted their expeirences but Im still no closer to a decision!

I cant say this enough, MY THROAT IS KILLING ME!

Like I saud, hit me over the head and remove it..... ANYONE???? ye have my promission!

[dani2776]

I am so sorry you are still suffering.  Have you tried to convince your doc to get an ultrasound?  Maybe they will find something that can push you harder to get it out!  I honestly don't know what to do or where to go anymore.  My thyroid is killing me!!!!! My sister who lives about 200 miles away works with a surgeon who said he would take mine out.  Want to come over to the US and maybe we can get a 2 for 1 deal, lol!!  I am actually starting counseling today to try and calm myself down.  Will it help?  Who the he// knows anymore.  I am losing faith of any hope!

[Jennifer1987]

Sorry to see your suffering to, I have a counselling session later on today aswell! I think it has helped me so far but not dramatically!

Ya Il def come over if he will do a 2 for 1 deal! lol...

Il will be totally honest with you, I didn't even ask my doctor yet! Im so afraid, I dont know why! I know I should book an app. but no-one seems to be taking me seriously! If I say anything about it to my family they think Im exaggarating it! I know its because they haven't experienced it but I wish they would listen to me to. My mom is great but thinks I should listen to the doc! So I haven't said anythig about an ultrasound to her yet!

the prob with me is Im so young, they dont take me seriously!

[dani2776]

I know you are young.  I am 32 so not exactly ancient but I was 27 when this all started and no one listened to me either!  If you seriously contemplating an apointment with an endo, then I would address all this and all your requests with him.  They don't know your history so if you have nothing to lose!

[Jennifer1987]

Im going to give my doc one last chance to shine... Im making an app. Monday and me and my mom are going up to have a chat! I will lay down the law so to speak lol! I just ate dinner with mom there and told her how I was feeling and that I want to sort this out now.. so she said she will come with me!....

When is your next app. with dr??

[dani2776]

Well I hope you get some answers from your doc.  Just don't leave until YOU are satisfied.  I understand your frustration with no one understanding as I have that problem too.  Only you know your body and the way it should feel.  I don't go back to the doc until August as I was just there a few weeks ago.

[Jennifer1987]

Ya I know! I will blow a fuse if they fob me off this tme! Im not supposed to be back untill then 2 but Im going nuts, want this sorted!

My 22nd is in three weeks and I swear I feel like Im turning 90!

[Smilerdeb]

Why are you afraid of your Doctor?

Plain and simple answer to that is.....
Explain all thats going on, then demand a referral to a ENT (ear, nose & throat surgeon) or an Endocrinologist.
Forget the Doctor...ask for a refferral.
If he refuses then tell him you will go somewhere else to get one and explain that you are getting nowhere with him and that this condition cannot go on forever.

If you have too...print out these postings..show him just exactly how YOU feel.
Forget what HE feels..its YOUR body and YOUR life.

[Jennifer1987]

I have made an app. today for Monday and will explain all to him.. I will ask for an ultrasound and ask for the option to remove it or up my eltroxin!

Its getting to the point now where I feel I will literally shout at him... Im to polite for my own good.... I promise I will stand up for myself and if that doesn't work Il set all ye on him lol...

In agony today with throat so it has to stop!

[Smilerdeb]

Who makes your ELTROXIN?
Here is some interesting reading for you.....

June 7 -- Folks in New Zealand are up in arms, because a reformulation of the drug Eltroxin (a brand name of levothyroxine manufactured by GlaxoSmithKline) appears to be causing problems in thyroid patients. Patients taking Eltroxin (which is government funded in New Zealand) are reporting all sorts of side effects and symptoms since the drug was recently reformulated.

According to a company spokesperson, the reformulation was necessary due to changes in the manufacturing operation, moving the production of the Eltroxin from Canada to Germany. While GlaxoSmithKline is saying that levothyroxine in Eltroxin is the same, there are new filler and binders in the reformulated product.

Goldshield brand levothyroxine has sold out in New Zealand, and frustrated thyroid patients will have to wait for more shipments to arrive, as well as possible shipments of Abbott Laboratories' brand Synthroid. The demand for thyroid drugs is due to nationwide reports from patients of significant side effects due to the reformulation of government-approved thyroid medication, Eltroxin (made by GlaxoSmithKline).


Eltroxin has had a lot of controversy here in Australia and New Zealand.......although I dont know about the Uk or anywhere else.

Check the manufacturer on the box and if GlaxoSmithKline, then ask for another brand.

[Jennifer1987]

Nope, GoldShield is written on the box!Its Levothyroxine Sodium! I don't understand the whole medication side of things. Maybe Im just under medicated and meed an increase! Oh Jez I don't know!

[gimel]

I've been telling you that you are undermedicated.  Please read this previous post.


I really think that you are wasting whatever energy you have by chasing the idea that surgery for your thyroid will solve your problem.  Likewise for getting an ultrasound.

The problem is that you have Hashi's.  Your TSH is still too high, indicating that you are not getting enough meds to get your free T3 and free t4 to the upper part of their range and suppress the TSH to the low end of its range and relieve your symptoms.  Clearly you are running into the UK Health Service stone wall on thyroid issues.  From what I read they are adamant that patients only need medication to bring their TSH into the reference range  (the old range, by the way).   This frequently results in patients with lingering hypo symptoms.  Getting more blood testing done in a few months isn't going to help either.

Within your health system do you have the freedom to go to any other doctor?  If so, can you possibly find one that is not so rigid about TSH being the determining factor for medication?  That's what you really need, a doctor that will treat you based on your symptoms, by testing and adjusting your free T3 and free T4 as required to relieve those symptoms, without being shackled by TSH.  

[Jennifer1987]

I am so confused at all this.... There is so much involved. ya I saw that post, its true my TSH is 4.33 and they do go by the old ranges which is annoying. but given the fact they don't use the new ranges I dont know how I will convince him!
Do you think I could benifit from a T3 med too???
I have an app. Monday and I want to get it all out then!

Im thinking of using this approach:

Il Ask him for an increase in my meds and if he says no, then Il explain that the new ranges are .3-3.0 and that its not going to hurt to increase my meds. if I go hyper I can cut down again.. 25mcg will do the job I think!

I think I will suggest an ultrasound too as my throat is really sore an it cant hurt to see... But if I get an increase I will leave happy!

[gimel]

I think I would tell the doctor that you are under medicated, because:

1.  you are still suffering from all your hypo symptoms.  
2.  you are being medicated just to bring your TSH into the reference range, and that is  obviously not enough to relieve your symptoms, especially when you have Hashi's.  In addition, the old reference range is questionable, because the Amer. Assn. of Clinical Endocrinologists has determined that the data that was used to establish the old range included many people who were suspect as hypothyroid.  When these were taken out of the data base the new range was found to be .3 - 3.0.  Here is a link you can copy and show the doc.

http://thyroid.about.com/cs/testsforthyroid/a/labs2003.htm


3. that you understand that when patients have Hashi's, their symptoms are relieved best by medicating enough to suppress TSH to the low end of the range, by raising their free T3 and free T4 levels to the upper part of their range.
4.  that you have read that hypothyoidism symptoms correlate best with the most active thyroid hormone, which is free T3.  Symptoms do not correlate well at all with the pituitary hormone,TSH, so why use that as the diagnostic.  It is far better to base treatment on the active thyroid hormones, free T3 and free T4.

After a lively discussion about all this, no doubt, I would then ask that your meds be gradually increased, and that your free T3 and free T4 and TSH be tested every 6 weeks until your symptoms are relieved.  I don't think I would bring up the question of T3 meds at this point because you really don't even know  if that is part of the problem or not, since you don't have free T3 testing yet.  A T4 med, in the right amount, might be just fine for you.  You can handle the T3  question in the future.

[hope4thegoodstuff]

I find it interesting to read so many posts where people say they have actual pain in their throat.  I never had pain...I never had trouble swallowing, but when the surgeon took my thyroid he said was was extremley enlarged and very hard in texture due to the hashi's..I do not know how long I had been dealing with it with that without medication.  I was not diagnosed with it to start with.  My dr just thought I was Hypo.  and there was cancer, so it had to go.  My symptoms seemed to be more heart palps, anxiety and swift and frightening mood swings...(that from my husband)  I really had no clue that I had a thyroid issue.  I thought the drs were nuts and I was going to die from mysterious unknown disease.. LOL.

[Jennifer1987]

Gimel: Thank you for that last post, I think Im begining to understand this a lot more now! I cant wait to fo into my doc. tomorrow and tell all. lol thamks so much!

Hopeforthegoodstuff: I was diagnosed with just hypo last September and I asked my old dc why.. he said just because.. No eplaination to why.
In my opinion there is ALWAYS a reason/cause of hypothyroidism, it just takes a good doc to find out! I was told I had HAshimoto's about 3 weeks ago, so I was relived to know WHY, but disappointed because Im stuck with this for ever!

On a happier not, I went out last night and had a brill night!!!! Glad I can still do that!

[dani2776]

Did the symptoms of anxiety and frightening mood swings alleviate after your thyroid was removed?  It seems Jennifer1987 and I are having the issues with the anxiety.  The physical symptoms are bad but the mental part is WORSE!!!!! My poor kids never know when I am going to blow and it is scary!

[Jennifer1987]

Well appointment today was a WASTE of time! He barely listened.

I asked him for an increase, told him about the new ranges andthat I wanted my TSH down to 1....

His reply: My thyroid is working perfectly at the levels its at, that getting my tsh down to 1 is very dangerious and he has never heard of it being done.

So he said I have some sort of depression and that I should go on meds. I refused and got really angry with him and my mom as she didn't even back me up! He won't up my meds but he is referring me to an endo..

He as good as said I was a hypocondriact. he said I worry about my health too much! When i left I gave my mom an ear full and said thanks a mill for backing me up..

I now actually feel like I could Kill meself!

[dani2776]

Stay positive.  Your doctor is not very knowledgeable about the thyroid but is at least referring you to an endo.  Lets hope that will give you some answers.  It's hard not to constantly worry about your health when things are not going well.  From the time my eyes open in the morning to the time I fall asleep, that is all that is on my mind.  As far as your mom, try and not to be too hard on her.  She has no idea what is going on with you or how you are feeling.  She can only see what is on the outside and of course to everyone we look fine!  When is your appointment with the endo?

[Jennifer1987]

Il get an app. in about a week. To he// with them all, I cant do this **** anymore... None of them give to $hits about me.. Quick fix with anti depressants..

As for my mom, she can di and say what she likes cause I wont be listening!

[Jennifer1987]

Thats meant to say do and say what she likes!

[Totie]

What do you mean by "kinda of diagnosed with Hashi" in your first post?

If dr. believes its all depression, then why would he send you to an endo? There has to be something for him to make the referral that he found.

[Jennifer1987]

He is trying to prove me wrong! My antibodies are hign but hes just waiting til they go higher to diagnose me!

Im going for ciounselling aready so I think Im giving all I can to his theory... Im so upset now, things look worse than ever!

[Totie]

Make sure the endo he sends you too specializes in thyroid...

You do not want one that deals primairly with diabetes, they will treat you by lab numbers.

Why have they not done an ultrasound if your throat is in pain?

I did not have any pain in my throat due to the thyroid mess i was in (graves/hyperthyroidism/goiter), maybe it is something totally different causing your pain, enlarged lymph nodes, salivary glands.

Your dr. said that he had never heard of a level of 1.0??? Change doctors...

My last level was .67, which is good. My primary agrees in keeping it under 1.0, but I don't have a thyroid anymore either.

Too me he should had increased your medication by .25 at least. What would it of hurt??
Get an ultrasound or CT scan of the throat, to me thyroid should not be painful but eveyrone is different.

[dani2776]

Do you know what your antibody level was?  To be honest I don't think it matters how elevated it is, if it's high you have Hashi's...period!  My levels are VERY high and from what I heard the higher, the more difficult to treat.  Be a little more specific as to what you are feeling.  Is it still the anxiety?  You are not alone Jennifer, I am struggling really bad today!  Maybe we can lean on each other ;-)

Danielle

[Smilerdeb]

Be firm with the Endo...dont rush in like a wounded bull as this tends to intimidate them lol.
Write EVERYTHING down and also state you are not leaving the consulting room until you have answers.
Most Endos/Docs are quite willing to discuss everything and are open to suggestions.....so my advice is ..

1. Suggest an ultrasound
2. Suggest an Uptake Scan
3. Suggest an increase of 25mcg stating that if you go Hyper, you will go back down to the former dosage.
4. Ask why you have cancer producing antibodies?
5. Ask if it is possible that you may have nodules..hence the request for an ultrasound.
6. Explain ALL symptoms.
7. Explain that you would like to be treated like a human being rather than a 'fruitcake' and explain that this is what has happened previously.
8. Explain that yes you do have anxiety BUT this only started when the thyroid problems did.
9. Ask the Endo to put himself in your shoes.
10. Thank him for his time and expertise (they love that) and speak calmly and clearly all the way through the consultation.

Research all you can....print out articles to show him and lastly, GOOD LUCK.

If this doesnt work then see another Endo.

[Jennifer1987]

Well ok: I explained to my doc about my headaches and sore throat and he told me that they are all stress points and will hurt if I am stress/depressed... If only ye saw me, I was bulling, Told him then i felt I needed an increase, nope he said I do't I quote " Its very dangerous getting your TSH down to 1" "your thyroid is working perfectly at the levels now"... I TOLD HIM I FELT THAT I WAS GETTING NO WHERE AND THAT AN INCREASE BY 25 CANT HURT!   Oh but yes it can bla bla bla bla bla! Thats all I heard after that!

Told me not to rely on internet as its not always right and bla bla bla bla bla....

Antibosies were 339 or something like that! Not to high, just over the pos. mark!

I went for a few drinks last night with co workers and boy did it relax me!

[Totie]

You should had questioned him. If below 1.0 is dangerous, WHY then is the lab ranges .3-3.5...

When is your appt. with Endo?

[hope4thegoodstuff]

Sorry I haven't got back...Crazy week here.

Yes, since my thyroid is gone, I am totally hypo now...I get really minor, short lived anxiety attacks and only had heart palps once or twice.  This usually happens when I first crawl into bed and it is only minutes now.  Before I would have 4 to 6 hour panic attacks.  Felt like I was running around like a crazed person....could not get a coherent thought in my head.  Could not breath.  Hated that.

On the other hand.  I had my TT end of march...Now it's end of June and I'm still to the point where...if I sit down and I am not mentally engaged somehow...I go to sleep.  I'll wait a week to watch a tv show and then sleep thru it.  That is so annoying.  So I still have some work to do in getting my meds right...I'd think....

[hope4thegoodstuff]

My antibodies were at like 336 or something when my General sent me for a sonogram.  He wanted to see what my thyroid looked like.  He knew then that I had Hashi's.

[hope4thegoodstuff]

Sorry...ultrasound...don't know if they are the same thing or not.  Ha...My daughter is an x-ray tech...wouldn't she be so proud....  LOL

[Jennifer1987]

I was so angry I couldn question him. He said he never heard of the new ranges! Im feeling ok now, calmed and clear headed!

A lot going on right now thats causing so much stress so Im trying to keep cool headed!