Please help, someone!

[anoama1]

Hello everyone! I posted all of my initial symptoms in the neurology forum back in August but received no replies. I figured I would try here, because every dr I see is stumped as to what is wrong with me. Any help would be appreciated!

I'll start off by saying all of my symptoms:
*severe facial burning-gets worse in the sun/heat/when I exert myself. No rash or elevated temperature. Sometimes if it is really hot, my entire body burns.
*weak muscles, particularly my thighs.
*my shin was numb with pins & needles for over a month (has since gone away).
*intermitent shaking of my hands and heels.
*inability to sleep.
*moderate/severe pain in my hips/knees/shoulders/ankles/neck/lower back.
*palpatations/fast heart rate.
*headaches
*fatigue/foggy memory
*mood swings/severe irritability
*night sweats with the chills.
*hands and feet are always purple
*substantial vision and hearing loss.

Family history:
*2 cousins have lupus
*1 cousin has reynauds
*sister and mother have graves, aunt is being checked for graves. Grandmother has thyroid issues.

I have seen so many drs and specialists, blood tests (all negative except severe vit D deficiency), sonograms, I'm even seeing a psychiatrist and LCSW. Nothing is working. No
one can figure out what's wrong with me. I can't work, I can't go out in the sunlight or be around any type of heat. My legs are so bad, sometimes I'm afraid I'll fall down the stairs.

I'm scheduled next week for another sonogram of my thyroid, but all of the blood tests came back within normal range twice now. I'm waiting for an appointment with the rheumatologist. I'm a disabled 36 yr old vet, so I have to wait for the VA for appointments. Does anyone have ANY ideas of what this could be? I can't take this much longer.

Sorry for such a long post!

[sayokayok]

I have graves disease, you have it to.  the reason your blood work isn't showing anything is graves is a symptomatic disease.  My blood work my moms and my sisters all came back normal.  Something brings us to the emergency room, my mom it was a heart attack, mine was my eyes popping out never blinking or closing.  My sister had bone marrow depression.  I was the first to be diagnosed.  5 years later my younger sister, 5 years later my mom.  My mom won a 500,000 malpractice suit, but it also caused her, her life she only lived 10 years due to her damaged heart, he ignored the family history, which is what your doctor is doing.  This is your life and this disease will kill you, so scream and shout until your heard you have to live with the end result.  Take you pulse during the day if it get high or your blood pressure is high, get help.  Sorry, But the vets have it worse than the HMOs.  You should have the best medical care sadly you don't.  Can you get on Medicare disability?  You will have a hard road ahead if you have to rely on the vets. blood work will not show anything until you are in an emergency situation.  The thyroid scan will though.  Your symptons are serious and something serous is going to happen.  Please go to an emergency room your vital signs should prompt medical attention.  
I have had this disease since I was 19, me and my sister both activated the illness through child birth,  my mom from the death of her mother.  
Emergency rooms don't always get graves disease but they do get bad vitals.  You need to get a good endocrine doctor or internal medicine, NOW.  As I said none of us had abnormal blood work.  There is now a test you can have to verify you have the active gene.  My mom and sister had HMO insurance I had a PPO.  They both have passed away my mom at 61 my sister at 49.  If I had been treated when I first had symptoms It would've been treatable by medicine, instead I've spent my entire life trying to get under control.
Now vitamin D I'm going through this issue right now, some of you symptoms indicate overdose, I was taking 50,000. twice a week, I brought it to 5,000. a day and now taking 10,000 my blood shows within normal range.  I laugh when I get my blood results and I'm told my thyroid is normal, I've had it removed 3 times, That's not normal, right?  I hope someone can be helped by our hurt.  Here's some helpful suggestion I used when I couldn't get help.  You need to be in a quiet calm environment.  keep a daily record of your pulse blood pressure and weight.  Watch you eyes, once it hits your eyes it becomes another illness, incurable.  I had to have bilateral orbital decompression surgery, my eyes haven't closed since I was 19 and that's with the surgery.  my moms eyes rolled into the back of her head.  Who suffers when doctors are ignorant? we do.  A daily record will help you and once you see a doctor it will be hard for a doctor to ignore.  This Disease is expensive and really hard to treat, you need to listen to your body and defend your condition as loud and as often as it appears.  next time you have heart palpitations or your vitals are high go to the hospital, they may ignore the cause but they will treat the effect.  You need to stay as well as possible until they get your scan results.  I hope this helps.  Keep asking for help, here, there and everywhere.    

[TheLightSeeker]

Just challenge the Endo with this: "The prevalence of TBII-seronegativity in untreated patients with GH is 5·4% using a second generation assay."

In other words it would make sense that you may fall in this minority group of untreated Grave's Hyperthyroidism sufferers (TBII- seronegativity)

If you want the complete article I can send it in pm.

As far as your D3 megadosing goes, consider also taking K2, to ensure proper calcium deposition in the teeth, bones and joints, instead of soft tissues.
Also look into vitamin D resistance (VDR) as another possibility, if you're not experiencing any improvement from your supplementation, but it would be
rather rare at these high doses.

And you're welcome.

Cheers.
Niko  

[anoama1]

Thank you for your reply! I keep telling them it's grave's but they won't listen because my labs have been negative twice.

As far as the vit D deficiency, I just finished a 3 month regime of 50000  IU's per week. Waiting on the blood test results for that to see if I need another 3 month course.

Thank you again!

[TheLightSeeker]

Apart from the vit. D deficiency,  which must be treated and continuously monitored , your symptoms indicate Grave's disease, despite negative
labs.

I'll post again later when I have more time.

Niko