from Graves to RAI to Hypo to still not right is there an end?

[glasswitch]

I was diagnosed in 4/04 ( believe I have had graves since 16 yrs old)went through two doctors who were no help at all. and finally found one who would listen and seems to want to help. She had me treated with RAI in 6/05, took about 3 months ( i hit rock bottom and couldn't move off the couch without being in pain) before she started synthyroid. I don't remeber the starting dosage it has been changed about 8 times since then, TSH goes up and down. Everytime she changes it I am sick for about 2 weeks, is this normal? Just this past 2 weeks she changed it from .5 to .75 because my TSH went from 2.43 to 3.75. My main question is after the amount of time since RAI, shouldn't I have started to level out more than what i am?
I am always cold, hands, feet, severly cold sometimes breasts also. I have swollen hands, wrists, back and neck pain, constipation, always tired, weak muscles mostly upper body. I have been chacked for RA and it was negative. I have been checked for pretty much everything under the sun costing a fortune, and still nothing. but yet the doc says thyropid is dead and levels close to normal, so all my other problems must be something else. I don't believe it. With this recent meds change I have a new pain, my throat area is tender and some what swollen, sometimes hard to swallow even the smallest things.
Can you get thyroid cancer after having RAI? What to do now?
I have many other symptoms also that sound like hypoglecmia, and a cyst that appears when my levels go extremly low.
ANY IDEAS????

[GravesLady]

Healing takes a long time. Leveling out takes a long time.  Depending on how much 1 131 dose you were given, it might take up to 10 years or more for total ablation and this depends on other facts as well.  When reaching med. dose between 250 and 300 the thyroid should be totally non-functioning. Until then we have some function. There are so many things that could influence levels, therefore we will need med. dose adjustments from time to time. Hopefully you are waiting 6 to 8 weeks after med dose change for testing, if not you will get erroneous readings.
If you are having problems with your throat, have it checked out, especially for nodule(s) which your symptoms sound like. Sometimes a hyperfunctioning nodule can appear after RAI which takes over thyroid levels no matter of the meds.  I am having this problem now but I won't fully investigate until I exhaust all meds doses and then some.
You won't get cancer from the small amount of RAI that is given us Gravers'.  I think your symptoms are just the course of Graves' disease, or, could possibly be from something else.  
I have had cold feet and cold hands, basically a cold person, all my life.  This winter I am wearing three pairs of socks, slippers are fuzzy inside and 1/2 thick rubber souls and my feet still hurt from being cold.  I also wear cloth garden gloves with tips of figures cut out when on computer.  I'm not sure if this is Graves'.
You can have doctor do a simple blood glucose test.  I have read where Graves' will be slight hypoglycemic. Mines runs a tweak under/low of Labs reference range.  Of course I had all types of eating problems and weight loss before treatment and I think some are carried over to after/now.

Nothing is a 100% or 100%, 100% of the time.
Just my personal opinion. Always discuss your health issue with your doctor ,
always adhere to your doctors advise ,and, you always have the right to a second opinion.

GL,
1990 - Hyper/Graves'
1997 - Dia/RAI
1999 - TED - slight Thyroid Eye Disease
1999 -  Visible Nodule (suspect hyperfunctioning)
IED  - Intermittent Explosive Disorder (Graves' Range)
http://www.nih.gov/news/pr/jun2006/nimh-05.htm
http://psychcentral.com/disorders/sx51.htm
MVP  - Mitral Valve Prolapse
SAD  - Short Attention Disorder/Span

[utahmomma]

I am sorry for all you are going through.  I'm not sure of your ablation dose buy my RAI (for cancer) was 100mCi and it changed my entire body.  Everything I eat, everything I taste, smell, feel, and do is different.  It's like being used to driving a car then someone switches it out over night for a completely different one with no owners manual.  (And a 40 year old one to boot - I would have preferred two 20s)  :-)

GravesLady asked the first question that came to my mind.  Did they show you an uptake scan or have you had an ultrasound?  It sounds like you may have nodule(s).

Call your endo and request an ultrasound and an office visit to discuss your levels.

My levels are still whacked too - you're not in this alone!

[glasswitch]

I believe the RAI dose was 29, it was supposed to be lower and they changed at the last min. I forget to add: I am 29, I have two kids, work full time at a law firm, married, and take care of my dad who seems to be slipping into early dementia,I had tonsils removed at age 15, hysterectomy at age 25, with interier bladder repair also.  My muscles are weak but mostly in arms, can't keep them up very long like to put contacts in, pluck eyebrows, brush hair( which i lose bad still)My edno does check my levels at 8 weeks after dose change and actually i was good for about 4 months and have come down again. my endo sent me to a hand spec. for the swelling in hand and wrist, she said it couldn't be realted because I was "leveled" out. This spec. said i had compressed perph nerves and sent me to phys. thearpy , 3 times a week for a month, at the end of the month the thearipist told me he didn't know what is wrong with my hand and wrists and i was in worst shape than when i started. As for the glucose, the doc did check me and my body decided to behave that day when she did a 4 hour test. The lowest it dropped was 42, the doctor had given me a glucose moniter to check it when it happened. Then it stopped. That was last August. Now its happening again. I haven't had any scans or ultrasounds since before the RAI. I also have had vision loss in my right eye first time lasted an hour, it has happened 5 times since then and only last about 15mins its like someone drops a curtain. Eye doc says nothing wrong and won't happen again, that was after the first time... Endo sent me for a cat scan and found nothing, but I'm "OK" because I'm leveled out...........gee....I think there is stil something not right.. The worst part is feeling crazy, still having to deal with the rest of the world and try to keep it together...any body feel this way? Everyone at work thinks I am nuts or a hyperchrondric and some family memebers too. But I also know there are others out there who have it worse and I should not complain as much as I do. I just want to feel better, I think anyone who has gone or still dealing with this disease should be nominated for an award and the award should be to be healthy again.