Getting a diagnosis has been a hard journey over the course of the last 5 yrs,
I had ovarian cancer 5 yrs ago and had to have a total abdominal hysterectomy/opherectomy due to the grapefruit size growth on my ovary & a uterus twice the size it should have been. They also found an orange size growth on my R adrenal gland as well. Took 8 wks to recover, and prior to that I didn't really have a lot of symptoms or I had had them so long I had just learned to live with them, but the surgery seemed to trigger something and everything got worse to the point of not being able to function without a nap most days.
I have since spent the last 5 yrs trying to get various doctors/ specialists to listen to me when I felt like something else was wrong..... Couldn't sleep, peeing 3-4 times a night, thirsty, horribly fatigued, random muscle pain/soreness, trouble swallowing, choking/food stuck, feeling of food getting stuck in my chest, hair falling out, dry skin, weight gain- even though I am hardly eating, acid reflux/gerd, brittle nails, mood swings, bladder cramping/spasms, stage 4 pitting edema, with a maternal family history 3 generations back of diabetes & hypothyroid disease.
Primary (internal medicine) Dr's response to issues: pick your top 3 & we will treat those then we will treat the next top 3, or it is sleep apnea, your TSH labs are fine so it is not your thyroid, it is all in your head, you will feel better if you loose some weight....etc
My response: I don't want you to just treat the symptoms & throw pills at me, I want you to help me figure out what is causing the symptoms. It is not sleep apnea ( did the sleep study, scored a17 mild) he checked glucose, but it was not a fasting test.
Requested he check t3/t4, cortisol because of adrenal tumor, etc he refused because TSH was normal, requested he refer me to an endocrinologist ...same response, leave frustrated.
1yr follow up post hysterectomy with OBGYN... Dr's response to fatigue other issues: of course your tired you work & have children, it is most likely stress
My response: I have worked & had children for 20 yrs this is different, I am exhausted and need a 2-3 hr nap everyday to function, then some days I can't sleep more than 2 hrs at most & will crash/burn after a few days & be in bed for 3 days or more. I am gaining weight & holding fluid & no one can tell me why. He tells me to come back in a yr and to talk to my primary.
Talk to primary again, I am in tears and sobbing...please listen & do not tell me it is all in my head... I do not want sleeping pills, or something for depression, he does blood test for cortisol mid day, all is fine. He put me on Lasix for edema & refers me to a vascular specialist for adrenal tumor follow up, a urologist for bladder spasms/ issues & a gastroenterologist for reflux/gerd.
Vascular specialist does ultrasounds/ct scans/ blood work every 6 months for 2 yrs, says adrenal tumor is benign, wear compression socks for edema...discharges me.
Urologist...does bladder function test, ultrasound, etc all is functioning normal, no issues in bladder, here are some pills to help with incontinence & if I loose weight I will stop peeing myself. Discharges me
Gastroenterologist -- finds I have erosion of esophagus & a stricture, which is why my food is sitting in my chest & I feel full after a few bites, he dialated it & puts me on pills for reflux. Discharges me.
Do sleep study follow up with pap machine...feel worse than I have ever felt before, my lungs hurt horribly for a week afterwards. Refuse to order pap machine. Results say to follow up with ENT dr
Schedule ENT visit, find out I have deviated septum, he says the trouble swallowing/choking is acid reflux causing vocal cords to swell, put me on more pills for reflux, have surgery for deviated septum. He wants to do another sleep study after surgery, I never bother at this point...getting tired of dr's, still feel like crap most days & finding ways to function/get by without loosing my job.
Herniated a disc in my lower back 2 yrs ago, chiropractor's are more holistic then conventional dr's, intake form has lots of questions on how you feel. We discuss, he feels a have a thyroid problem based on symptoms, he sets up referral to Endo dr for me.
See endo, a1c is 7.8, diagnosed as diabetic 2 yrs ago, says my thyroid feels a little large, they might do an ultrasound, other labs are all fine..t3/t4, cortisol, cholesterol, I am not in menopause, estrogen is good, etc... They put me on a bunch of pills, come back in 90 days.
Try to find a new primary dr, find one that specializes in diabetes, leave new patient appt in tears, he will not discuss anything related to my diabetes, talk to my endo he says. I tell him I want someone who will help me coordinate all of these specialists, and to talk with about the side effects some of the pills are causing, he tells me again to talk to endo. I leave and never go back to see him.
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