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Sick daughter goes undiagnosed
My 26 year old daughter has had on going health problems since her teens. She has been from doctor to doctor and no once can seem to pinpoint what is wrong with her. She weights 89 lbs, can't gain weight, has chronic pain in her abdominal area and a small mass that can be felt. She has had 4 MRI's which found nothing. She lives in Arizona and was in the Scottsdale Mayo ER, they thought it was an ovary or endometriosis and they did an ultrasound, blood work and pelvic exam. Found nothing, sent her home but told her to come back if things got worse. They never get better. I wish they would have looked further to see what the problem really is if it isn't female issues. She is so slim you can feel there is something going on, a mass. She also gets chronic inflammation in her rib cage on one side, on and off. No one can explain that either. Her blood work shows she produces very little progesterone. No one really has done anything to address that. Her diet is very limited because she gets ill very easily. She gets night sweats that soak her sheets just about daily. She runs low grade fevers frequently. She has had many tests done over the years, and while things may come back "slightly" off, no one has a diagnosis or explanation for why she is chronically sick. The chronic pain is affecting her mental state as well. She can barely function enough to keep a part time job. Her income level is low so she could never pay out of pocket to get diagnosed by Mayo. Her government insurance policy that she pays for doesn't want to approve many tests or specialists. Even when they do, they are mediocre and all they want to do is give her pain meds and anti nausea. She does not take the pain meds and the anti nausea just provides a bit of relief. She needs a diagnosis, not meds that cover up symptoms. What is causing all of this? I wish she could afford to go to Mayo to at least get a diagnosis. She is deteriorating and no one helps her. We do not know what to do. I am her mother and I live in Wisconsin and do what I can to help her keep afloat. At 89 lbs she is frail and dragging herself through her days not living life. I am scared for her. I wish I could find her some help.
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Thanks for all information! It is possible that the lymphatic problem is separate from the digestive one. Another autoimmune illness that should be checked out is celiac disease where you can’t tolerate gluten. Symptoms are what you describe happens after she eats. The illness alters the inside of small intestine so that it can’t absorb nutrients.
My 2 daughters have it.
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4 ReactionsAnother thought- at her age the thyroid should not be slightly off- no explanation. Same with progesterone. The pituitary gland in the brain regulates production of many hormones. Endocrinologists should be able to explain why. Don’t give up - keep pushing for answers to all deviations from normal.
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4 ReactionsI completely agree with you! We will not give up. The answer is there, just need to find the right doctor who thinks outside the box. Thanks!
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3 ReactionsThank you. Celiac was ruled out a few years back. I have a friend with celiac, so we are familiar with it.
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2 ReactionsSorry to hear undiagnosed, I know it's frustrating. I have graves diease it's in remission for the time being but I do have other mystery illnesses that I'm working on because it doesn't seem the medical doctors understand. Test you may want to look at DNA sometimes can give a clue, genvoa nateval test, 24 hour cortisol salvia test most insurance will cover these test the problem is getting a doctor to order them. My mystery illness has something to do with oxalates once I changed to a lowering oxalate diet I went in remission with my graves plus even thou I've been on a lowering oxalate diet for two years my genvoa test says I'm still high oxalate so I do have gentic that show this also. Then my DNA says mthfr gene mutation my genvoa nateval test shows my vitamin Bs glutathione alpha lipoic acid are all low or deficient I'm working on these issues it not that easy because I have reactions to some of the supplements, the coritsol test can tell alot what's going on stressing the body and adrenal. What was her thyroid test numbers hopefully they tested tsh ft4ft3 t3 t4 rt3 trab tsi tpo selenium iodine levels iron/ ferritin. I'm still looking for a doctor that can help me my functional doctor just handed me my test and told me she doesn't treat issues like mine.
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2 ReactionsAlso look online for organizations that help people with medical test doctors meds.
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1 Reaction@80rosy, welcome to Mayo Clinic Connect. You may wish to connect with others living with Graves disease in the Endocrine System group here: https://connect.mayoclinic.org/group/diabetes-and-endocrine-problems/
In particular, you might be interested in this older discussion:
- Thyroid disease's impact on other conditions https://connect.mayoclinic.org/discussion/subclinical-hypothyroidism/
Are your other illnesses endocrine related?
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2 ReactionsI'm still trying to understand, but with my test results I see I'm high on citric acid I don't eat any citric acid or very little. This might be why my T4 is low, I feel I need a reserching at NIH to help me.
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1 ReactionI don't have her numbers right now, but I know her thyroid is slightly overactive. The theory is that since she produces such little progesterone, it is throwing her entire system way off. Right now the doctor she is seeing is putting her on a hormone therapy, which she will start next week. I don't know if his theory is correct or not. Either way she needs the progesterone. So we will see.
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1 ReactionIf her thyroid is showing slightly over active hopefully they will check for thyroid antibodies TSI TPO. Look at stop the thyroid madness online they talk about hormones having an effect on the thyroid. I was missed diagnosed for years.