Mom and 2 young adult daughters sick

[FrauKT]

We are a 49YO woman and her 2 daughters, 22YO and 20YO, sick for 3+ years (not all at once).

Lab results show (in all 3) ELEVATED Vitamin B12, TSH 3rd generation (up to 5.87), Beta globulin; DECREASED: globulin (type not specified) & vit D; blood calcium fluctuates from one test to another between 8.1-10.6; ANA is sometimes positive and sometimes negative. As an 8YO with severe abdominal/back pain, younger sis had abnormal test results, but we moved right after they were done and didn't see the results until years later; they showed low WBC (2.9), RBC, GRAN, HGB, HCT, total protein & creatinine, and HIGH Alk/Phos/ALP (235), LD/LHD, LYM% and calcium, then 2 weeks later RBC, HGB & HCT were even lower but others except calcium, which wasn't included, were normal)

Symptoms that we all 3 have are: bone and joint pain (sometimes severe); attacks every few months of severe lower abdominal and lower back pain that makes walking almost impossible; balance problems; memory problems; slight forward & back nodding from the chest up, in time to our pulse (?); blurred spots in vision; temporary loss of pain sensation; smell & taste way off; extreme fatigue; sleep disturbances.
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2 of us have: dizziness and sweating with bowel movements; slight heart murmur; fat in bm; rainbow-color oil slick in urine (and urine is pale neon green); splinter hemorrhages and other fingernail abnormalities; headaches that OTC pain relievers don't touch and several scrips for migraines didn't help.

For 7 months after a bout with what seemed like the flu, mom had severe joint pain and would wake in the morning (or after a brief nap) unable to grip the blankets to throw them off for 5 minutes or so. That went away almost overnight and then she had hip pain so severe that she needed help standing from a sitting position. After 5 months, THAT went away OVERNIGHT on the final day of a 7-day bout with (again) the flu.

One daughter began having seizures in 2009 consisting of arched back and rigid limbs with ability to blink in response to questions; in the ER once for a seizure, she had wildly fluctuating blood pressure, critical high fibrin d-dimer, low INR & PTT and her hearing distorted everything to a high-pitched squeal.

The daughters stayed sick and got sicker when they went off to college. New symptoms seem to come along several at a time every 8-12 months. We have been shuffled from family doc to internist to neurologist to endocrinologist and still have not gotten this diagnosed. Endocrinologist suggested the Mayo, but we have no health insurance.

[FrauKT]

Thank you for your response. I'm sorry it's taken me so long to reply. I'll do as you suggested and post all of our things separately. In fact, I'm going to post them (new posts) in thyroid (because one daughter had a 3rd generation TSH of 5.87), infectious diseases and autoimmune diseases, because I don't know what we have and these seemed the most likely...?

[Barb135]

I'm not sure if you are asking thyroid related questions.  Have any of you had thyroid testing done? At a minimum, this would be TSH, Free T3 and Free T4.   If so, please post labs done, results and reference ranges for each of the 3 of you; but in order for members to answer anything specifically, you should post each set of lab results separately, as we'd  not want to confuse one set of test results with another. Even though is seems that you all have the same issue, that might not be the case.  

Have any of you had rheumatoid factor tested?  Some of the symptoms sound like they could be related to rheumatoid arthritis.  Have any of you had thyroid antibody tests done?  What are the B12 levels that were "elevated"?  Please note that vitamin B12 is stored in the body for periods of time, is not toxic and what can't be used will be stored or expelled in the urine.

We really need to have information on the 3 of you posted separately, so we can make sure the information is not confused amongst you.  Maybe you could get mom and your sister to post separately, so we know which person we are dealing with.