S.O.S.-Living A Nightmare For almost 4 years

[nightmareillness]

Hi,

I had a full thyroidectomy October 17th 2005.  A week after my surgery, because I was going into a "thyroid storm", they gave me some type of an amplifier and then put me on Levothyroxine .125mcg, 6 weeks later, they did a blood test and went to .88mcg, 6 weeks later, went to .112mcg, etc. etc. etc. and it's been like that ever since, never been regulated.  The pain right after the surgery, I never stopped taking pain meds, the joint pain, the flu like symptoms, anxiety, everything got worse and just never went away.  We thought it was all the bandaid meds, we weaned me off and stopped everything.  I was bed ridden for over a month and it just got worse to where if I wanted to do anything with my life, I had to get back on the bandaids or I couldn't get out of bed.  This is the short version.

Fast forward, here I am today, no health insurance anymore, no endocrinologist, no primary care doctor that knows what they are doing, nothing, 29 years old, in constant joint pain in my knees, taking .125 of Levothyroxine because it is the only dose that makes me feel decent without severe anxiety, loss of weight.  But, it's still not regulated.  I still have bad pain daily, flu like symptoms.  I'm living a constant nightmare and I don't know what to do anymore.  I'm so overwhelmed.  I can't keep a job and I don't believe there is light at the end of the tunnel anymore.  I'm just ready to give up, that's how I feel.

Can anyone relate?  Can anyone tell me what to do?  Can anyone help?  

I'm so lost...

Thanks,
Dan

[nightmareillness]

And I was diagnosed with Graves.  Can it change after surgery?

My symptoms are definite of both diseases so it's difficult to tell.  Have you heard of Armour thyroid therapy?

[nightmareillness]

If I had a full thyroidectomy, doesn't that rid of Graves disease/Hashimotos?  Or do we always have it minus the thyroids?

[redheadaussie]

You have had a hard time of it! It sounds to me more than just a thyroid problem. Did you have Hashimoto's as well? That can give you all those kind of symptoms too. Often after surgery it can trigger a type of chronic fatigue syndrome which also leads to pain.
  Perhaps you could ask to be tested for these.
You might want to look at your whole diet and lifestyle too, often with some changes this can bring about some relief. Believe me I am still trying to sort out my own issues after the TT I had in Dec 07, but with the help of some determination and education I feel a bit more human again. Keeping a journal with basic information, like for example...9am woke....pain in knees...2pm felt tired....6pm went for a walk but felt dizzy...You may well see a pattern like I did, and learn to avoid the times which cause your body to be under stress... My particular bad time is between 3pm and about 6pm...so I try to avoid decision making or any thing which involves my usually numb brain! I have learnt to do my physical work when it suits me, not any body else...and that can be as late as 10pm some days!
  You may also need some T3 included in your dosage. The amount of people who have got suddenly better on it as well as the normal replacement T4 has been great.
  I am still fighting my dumb Australian doctors on that one, but I think if you are aware then you can get better.....slowly...but it will happen.
Cheers!