[npatterson]

#1068294

Lauren,

I am so sorry to read how badly you are feeling! You seem to have a clearer understanding of all the things that are going on that you realize. Please e-mail me at "nancyngdf@bellsouth.org".

In the meantime, keep talking to your therapist (perhaps print out a copy of your post). The website of the British Thyroid Foundation is http://www.btf-thyroid.org The e-mail of the President is Janis Hickey – j.l.hickey@btf-thyroid.org. Please try to get in touch with them. I don’t think there is an organization in New Zealand. You need people onyour side of the ocean, as well as us, to talk to.

You will hear from others that how we "feel" doesn’t necessarily track with our levels. Especially when there is a lot going on. Can you make perhaps three lists–Personal, Health, Work, and maybe "Other". Try to separate all the things that are going on into one of those categories. Try to identify which ones you have some control over, and which ones you have very little control over. Which ones you need help dealing with (and there may be many at this point). That is what the "new" Critical Thinking stuff is all about – breaking things down into more managable parts, and being able to look at the pieces in relationship to each other.

It sounds like you have a good team of professionals there. Use them. Stay in touch with them. Call your therapist tonight if necessary. You certainly have our good thoughts, prayers and hopes for you. Too many of us have been where you are (but it was our own "soup" we were swimming in).

Take care,

[ewmb]

#1068295

Lauren,
I hope that you don’t get too discouraged. I just had my RAI in beginning of May. I have just started my hormone replacement and was told it could take up to a year to get things settled. You said that you are 44. I am 46 and am going into menopause now too. My gynecologist told me that my thyroid issues would be so muddled with my menopause symptoms that I had to make sure and tell doctors about all things. They can do hormone tests to see if you are going into menopause. Are your periods still out of whack? Mine definitely are. There are side effects to all medications that aren’t always obvious if they don’t happen in a lot of people. My daughter was on prozac for a while and as she is a teenager we had to watch her very closely for symptoms of suicidal thoughts etc.. There is something called a blackbox warning on these drugs in the states as they can have really harsh effects on the very things they are supposed to help sometimes. She is off the medication now so I haven’t been reading up on it lately.

Where do you live in NZ? I have family in NSW in Australia. My aunt there, not my blood relative, is hypo. She sees someone in Sydney about 400 miles from her home. Surely there is a good endo in Aukland or Christchurch. I’ve read about people who’s labs were all normal but they didn’t feel right until they got the right dose for them.

Over my illness I too had so many different ups and downs. As your thyroid controls so many things in your body it can really take a long time to get better even when you have normal levels of hormone. Try thinking back to your worst days and see where they fall in your estrogen cycle. I kept telling doctors that I was always feeling better after my periods were over and they told me it couldn’t be my thyroid. I finally read about estrogen levels affecting a protein that binds to something that changes the thyroid levels. I can’t remember the specifics.

Please let us know how you are even if it is a bad, cross mood you are in. It’s great to get it all out here and learn from other people who’ve been through the same thing.

Take care,
ewmb

[ely2009]

#1068296

Lauren,

I’m so glad you posted. We may all have different stories, but in so many ways they are the same – you are not alone!!!! It’s so difficult to separate what’s hyper/hypo/anxiety/fatigue/stress/imagined and since it’s hard to figure out where it’s coming from – it seems impossible to fix it. Hang in there. Keep working with your docs to figure it out. I truly believe we all will be healthy eventually. It’s hard to be patient when you feel so desparate. Some days I feel like I’m settling for feeling better – even if it’s not "normal." But most days I’m glad to still be improving. I’ll say a prayer for you. Keep us posted.

Hugs and hope,
Emily

[lauren]

#1018985

I am so sorry to post this on here but I dont know what to do.
I am so lost now and dont know where to turn.
My thyroid after RAI 8 months ago is now in range adn has been for about 10 weeks. Im on 135mcg Thyroxine a day. My levels are pretty good and im converting to T3 very well. My endo has just discharged AND left my health in the hands of my GP and the local Mental Health Team. My bloods are ft4 15 ( range 10- 20), tsh 1.4 (range 0.3 to 4.0) and ft3 4.4 (range 3.0 to 6.0)
My symptoms change all the time.I used to have severe nervousness and feelings of unreality and all sorts of horrible anxiety symptoms. these have improved since my thryoid has come into range but I am still so anxious and depressed at what is happenning and what has happenedto me and how I can find my way back to me again. Was the happy me just the overactive Graves driven me?
I feel better than I did when I was in Hypo Hell after the RAI but my life is such a mess.
I now have these episodes where i feel so ill , fatigued, poisoned, breathless, headaches, nausea ill to my very core which can last 3 days , 9 days or up to 20 days then it will just lift?
but lately ive been getting extreme Hyper symptoms ( im not hyper at all according to the tests) in the aftnernoons and evevings adn yesterday I was on a high, super alert , hyperactive, severely agitated and so hot it felt like i had sunburn all over. It as like i was on cocaine. I went to my psychologist as I have been suicidal with all of this stuff plus other life problems and circumstances and she said it was amazing to see me like this as she said it was like a glimpse of who i used to be before mu breakdown as I was even laughing. But it felt unnatural….
Then today I wake up after a terrible sleep, after having a migraine all night, and feel so fatigued and ill i can hardly stand or breathe. I am crying so much as I write this because nothing is working..
My parents are beside themselves with desperation.
The mental health team say that I am not psychotic just completely and utterly stressed and distressed. I have been on antidepresants for a year and theyve just changed me over to lexapro. Im wondering if my symptoms are excabated by that. Gosh its so hard to know as i had the symptoms before I changed over.
My GP is sending me to a specialist to check me out properly, I beleive but i may have to wait sometime. I just dont know anymore whats Thyrodid, whats Female hormones, whats anxiety disorder and whats all in my mind.
all i know is i cant live with this anymore and am wanting to give up the fight.
I have lost almost everything, my job and life in London ( i had to flee back to New Zealand to be looked after my my parents, and Im 444 by the way) . im on a disability benefit, am soooo lonely and bored. Feel like ive failed at everything.
I have Graves for so long and I seriously believed everyoen when they saud once my levels were stable i would feel alot better. well yes in some ways I feel more normal ( i felt totally terrified and mental before) but nowhere near the person I want to be.
Im agoraphobic, worried, and feel so different to everyone else.
On the outside i look totally fine, i work parttime and volunteer at an art gallery and do evening classes, but its how I feel while im doingn them thats not normal. SO so hard to explain. I told my poor mother today i had nothing to live for and wish i hadnt been born. Isnt that dreadful. Please dotn hate me for being honest……
Anyway, i dont know what t say anymore…..

lauren in NZ

[hyperm]

#1068297

Hi Lauren,

After reading your post there was so many aspects of it that I could identify with and if I had a highlighter pen – I bet most of your post would be covered by now in bright yellow ink ” title=”Wink” /> … In fact my first post on here was one of desperation that i don’t event think i introduced myself. Then I had the up and downs and then after the op a major downer.

"but I am still so anxious and depressed at what is happenning and what has happenedto me and how I can find my way back to me again. Was the happy me just the overactive Graves driven me?"

Oh boy I have said that over and over…infact at one point after the op I was still so agitated and ratty that I thought "oh no all those nasty feelings weren’t the thyroid they were me!" But it has all settled down.

Ok I am going to honest with you – that kind of "hyper" feeling you have of laughing etc.. and it being surreal can be a form of anxiety especially if you are prone to wearing a "mask" which I was… it took lots of private couselling for me to take off my mask and not be the "all happy chappy all is well while I am dying inside but don’t want you to see that" me!

If like me you think 8 months and think ok thats it I have had the treatment and have waited the time I should be well by now therefore you put so much pressure on yourself to be well. Yes your bloods may be within range but thats not to say your body has recovered from the adrenal work out and the reaction to RAI…Time is a great healer and as rehab specialist I have seen elderly ladies in their late 80’s recover quicker than those in their 50’s / 60’s from hip operations/strokes, fractures/falls etc.. We are all different and all different healers. Its also really disappointing when you think ok I have taken this really brave step , got this aggressive treatment ok wellbeing here I come – bumf! Nope that hasn’t happened and that in itself causes a panic doesn’t it because I know I think – is this it? Is this what is left/ BUT! and a huge BUT better days are ahead we just need the patience to accept that…

I have had depression in the past and well anxiety is my personal enemy who never goes away ” title=”Sad” /> Its a horrible condition to have and it leaves a terrible weakness there which can be played out in many forms and half the time it takes you to have a really crap day before you can say "oh thats all anxiety and nerves" Depression is also very sneaky and it stops you from looking outside the box…Its when in hindsight (perfect vision) you can look back and think oh if only I had thought like that I wouldn’t have went through months of depression…But the issue is that your mind is so bogged down you can’t think clearly and thats when you need to get a little help to set you on the right path and like you are doing just now sooner rather than later….

Stress is a terrible factor in anyone’s life and when people like ourselves have a history of whether its depression/anxiety etc… there is a weakness there but don’t forget more so there is a STRENGTH, which brought us through those dark episodes in our lives Lauren!!! That strength is there hiding in the midst of despair! Lauren I can write all this I have been in similar places to you… I thought I was going crazy after my TS and then after the op and everything was starting to settle I felt as though my mind was going to snap! In fact I told my husband if he didn’t get me sectioned I was going to do something. My mum had to come up at midnight or there abouts and work with me until I calmed down.

Have a word with your GP about the side effects of your antidepressants as some can have a side effect which causes "manic" tendencies and that can happen at any time. Is there someone who you can speak to in the meantime? A counsellor? Someone who can give you that wee bit extra support? I am not ashamed to say that after the TS I called Samaritans many a night in the early hours when I thought this is it I am going to snap! They are wonderful people who have experineced life, depression and all sorts of things… Its always a thought and at the end of the day you never need to meet them eye to eye so you can sob or get angry or just let it all out.

Sorry this has went on too long but I wanted to reach out to you.. I am going to post a poem from the child within for you – its to apt for me and I think it may help you too. In the meantime contact your GP and someone if you feel its all getting to much.

Lots of love, prayers and hugs Lauren! Better days are ahead my friend just have faith!

xxxxxxxxxxxxxxxxx

[hyperm]

#1068298

THE MASK I WEAR

Don’t be fooled by me.
Don’t be fooled by the face I wear
for I wear a mask. I wear a thousand masks-
masks that I’m afraid to take off
and none of them are me.
Pretending is an art that’s second nature with me
But don’t be fooled, for God’s sake, don’t be fooled.
I give you the impression that I’m secure
That all is sunny and unruffled with me
within as well as without,
that confidence is my name
and coolness my game,
that the water’s calm
and I’m in command,
and that I need no one.
But don’t believe me. Please!

My surface may be smooth but my surface is my mask,
My ever-varying and ever-concealing mask.
Beneath lies no smugness, no complacence.
Beneath dwells the real me in confusion, in fear, in aloneness.
But I hide this.
I don’t want anybody to know it.
I panic at the thought of my weaknesses
and fear exposing them.
That’s why I frantically create my masks to hide behind.
They’re nonchalant, sophisticated facades to help me pretend,
To shield me from the glance that knows.
But such a glance is precisely my salvation,
my only salvation,
and I know it.

That is, if it’s followed by acceptance,
and if it’s followed by love.
It’s the only thing that can liberate me from myself
from my own self-built prison walls.

I dislike hiding, honestly
I dislike the superficial game I’m playing,
the superficial phony game.
I’d really like to be genuine and me.
But I need your help, your hand to hold
Even though my masks would tell you otherwise
That glance from you is the only thing that assures me
of what I can’t assure myself,
that I’m really worth something.

But I don’t tell you this.
I don’t dare.
I’m afraid to.
I’m afraid you’ll think less of me, that you’ll laugh
and your laugh would kill me.
I’m afraid that deep-down I’m nothing, that I’m just no good
and you will see this and reject me.

So I play my game, my desperate, pretending game
With a facade of assurance without
And a trembling child within.
So begins the parade of masks,
The glittering but empty parade of masks,
and my life becomes a front.
I idly chatter to you in suave tones of surface talk.
I tell you everything that’s nothing
and nothing of what’s everything,
of what’s crying within me.
So when I’m going through my routine
do not be fooled by what I’m saying
Please listen carefully and try to hear
what I’m not saying
Hear what I’d like to say
but what I can not say.

It will not be easy for you,
long felt inadequacies make my defenses strong.
The nearer you approach me
the blinder I may strike back.
Despite what books say of men, I am irrational;
I fight against the very thing that I cry out for.
you wonder who I am
you shouldn’t
for I am everyman
and everywoman
who wears a mask.
Don’t be fooled by me.
At least not by the face I wear.

---

author unknown and it has bee

[Blessings]

#1068299

Hi Lauren,

You have a lot to live for. With God, all things are possible. If we don’t have hope, there is nothing to look forward to. Sometimes it is hard to encourage yourself, but it can be done. We have our up days and down days. You are not alone. Please don’t give up! As a christian, Jesus is my strength. Yes, sometimes, I internalize and try to keep everything in, but I have had to learn to let my family encourage me and offer their support. I’m so glad that this forum is available because it helps to know that someone feels your pain — a sense of comraderie. I’ve had to leave my job because of TED and am now experiencing instances of diplopia. My eyes look horrible. Please–don’t give up. With God, all things are possible. I would welcome an email from you @ jejones77@comcast.net.

God bless!

Jannice

[lauren]

#1068300

Thank you beautiful people who replied to my desperate post the other day.
Im really sorry but I dont have the time right now to reply to your comments and questions but just to let you know Im plodding on. Feeling better physically, but who knows how long that will last as it changes all the time. My energy levels are good and I feel very alert ( no brain fog anymore and my hair is growing a teeny weeny bit) but Im still very depressed and anxious about everything and feeling agoraphobic. I dont feel at all like the normal me, even though i function in a normal way, I guess. ( but cant cope with full time work or socialsing)

Sometimes I wonder is its nothing to do wioth my Thryoid and that my mental health is actually all to do with my personality, life circumstances, stress, dissapointments etc etc. It so hard to explain all my psychological symptoms, they fluctuate and can be very disturbing.

Anyway, just to recap. Have had Graves diagnosed for 11 years, on ATDS all that time, never really stable except for about four months. Lots of things happened in that time obviously. Also think i had Graves a long time before diagnosis.
Anyway became very unwell, more mentally than physically 2 years ago and my world collapsed.
Came back to NZ and had RAI in Jan 2009. Went Hypo quite quickly, then took replacement and went Hyper then crashed into HYPO hell quite qucikly after that. It took about four months of Hypo to finally get my levels within normal range and I understand that you do not get well immediately. Diane and Ski have told me that many times ” title=”Smile” /> and that it can take along time to recover. Its just that I feel embarassed telling people Im still not normal ( like friends, Doctor and even on these sites) when my results are so good. I also feel like I cant even reassure myself when Im freaking out or cryinng uncontrollable that it is or was ever my thyroid and that me feel even more frightened.
Im currently on 135mcg Thyroxine daily have been on that dose for about 8 weeks.

Anyway, Im having blood tests taken weekly and last week,

they were; FT4 = 15, tsh 1.6 and FT3 4.6 (cant remember ranges off top of my head, but i did put them on my last post)

this week: FT4 = 18, tsh .90 and FT3 5.2

Are these stable yet? would these small changes affect me in any way either physically or mentally. Also at what point do you start tweaking the meds to suit you properly. Ive been discharged from former private Endo and he has left me in the care of my GP ( who knows nothing about Thyroid and is more concerned about my mental health and anti depressants, which im on and i seriously wonder if he ever beleived any of the emotional symptoms were thyroid related) .
I am however going to see a new ENDO/specialist at a public hospital to get a complete checkup but I am a waiting list.

Just wondering what to do next….am starting to give up the notion of ever being the same person again and being able to cope in the "real world" again and that makes me feel so lost and desperate.
Oh someone asked about my female hormones, well I get Horrendous PMS for 10 days before my period by my period is regular ( every 28 days on the dot) and im still ovulating Ive had my hormones checked and Im not even perimenoapusal.
I ahev got low ferritin and iron ( but am taking my iron a long way away from my thyroxone ). My cholesterol is high too (great!!!)

anyway,
thanks for listening. Am trying to keep going…buts its a lonely and scary ride.

love lauren x

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