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@jerrysgirl3 You are really having a tough time, aren’t you? Are you being seen at a community hospital or a major medical/university hospital. At these larger hospitals, doctors usually do work together on problem patients. You should be able to find one in you city or state. There are also the Mayo Clinic network hospitals which work along with the Mayo Clinic. Use this website to locate one: https://mayoclinic.org/about-mayo-clinic-care-network/members
Also, I found this website that helps you find a registered dietician-RD-not a nutritionist.
https://www.eatright.org/find-a-nutrition-expert?_ga=2.7671799.434232786.1695417809-2027734427.1695417808&type=telehealth
See if you can find one. You can also call the local hospitals and ask if they have dietitians on staff who will meet with outpatients.
Please don’t throw your hands up and give up. You are worth all the trouble that you may cause. You’ve received good advice from @gingerw , one of the strongest women I know.
Will you do some research this weekend and make some calls Monday? YOU are worth it!
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Thank you for the link. The one to Mayo network hospitals did not work. I think I was there already during my Mayo travels online. People don't understand what it's like where I live. Playground of the stars and wealthy people. Horrid, and hardly any, doctors. The local hospital is so bad I can't believe it's allowed to operate!! That's a serious comment, not one said to be funny. The closest larger hospital - I was very unimpressed with the thyroid cancer endocrinologist specialist. They are associated with my local hospital now 😳😳. My do nothing leukemia doctor, who let me get to where I am now (labs just came back-they are sooooo bad im freaking out. Going to fax them to new leukemia doc and maybe he'll see me earlier.) is from a major NYC hospital 😳😳😳. Mayo would be a good fit but for the fact I am on the east coast. I have insurance that will cover everything, just will be away from all family and friends during fall and winter and not sure I'd be able to handle it. And that's if they approve me! Local Hospital nutritionist actually told me with my severe wheat allergy I could eat gluten free buns! She was wrong. Bad hives outbreak!! They don't even have a special diet for those people with food allergies!! I have called, been given old lists, left messages, for nutritionists to no avail. I'm living in a true hell.
I've placed calls to RDs on a good website. One just got back to me that she was surprised I called as she hadn't seen or heard from anyone in a few years 😳
I'm the living version of Murphy's Law. Big storm coming in tomorrow for two days. I'll wait til Monday to make more calls. Haptoglobin is 2.9 ( range is 63-273!!) Platelets down 20 to 134 (in 2 wks) Blood sodium is down to 132. This is serious as I almost died in July when it went to 122!!! And I ate high protein (which is 6.6!) high sodium diet the night before!! RBC is 2.66. Hemoglobin is 10. Hematocrit is 29.8. They might not seem super low but I have severe anemia that leukemia doc in big city hospital refuses to treat. I send all my labs to him taken locally and I'll bet he never looks at them. I'm going downhill faster then a sled on an ice hill. And I've got a 5 yr old grandson who I love more than anything...I'm not ready to leave this life. 😢🙁