Desperate for Advice

"The doctors work for you - make sure they do their job. Feel free to point out they have the duty to explain under HIPPA - this should get a rise out of them and make them pay more attention, because nobody wants to be caught not adhering to HIPPA. It's a legal standard for healthcare."
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Not exactly what HIPPA is or does. It is more about privacy. Health care providers can't share healthcare information even with family members in most cases.

"HIPAA, or the Health Insurance Portability and Accountability Act, is a federal law that protects the privacy of patient health information, requiring covered entities to maintain the confidentiality of protected health information (PHI) and sets limits on when and how that information can be shared, even with family members."

I didn't advocate for having the exam. All I wanted was a Simple PSA test. Granted in is not 100% accurate, but at least it gives you a starting point! My main point here is my PCP mislead me then lied to me about whether I should have gone to the Urologist!
The urologist did not know if maybe the if cancer was present, since I haven't had a PSA test in over 10 years! Like you mine is enlarged! I have been having to go several times at night!
I would believe many of us over 75 worry about Prostate Cancer! News and media are always bringing it up!
We just need to get the word out!
Thanks, Sundance aka RB

Curiousgirl2468, Bless you. You have a lot on your plate.

I personally would try and see an Integrative Medicine Doctor, A Rheumatologist or an Infectious Disease doctor and ask for bloodwork for autoimmune issues, including checking for Lupus, RA, MS and a complete thyroid panel....that would probably have to come from an Endocrinologist.

I went to an Integrative Medicine doctor for Long Covid. He was phenomenal and checked me for gene mutation issues, which I do have. He did infusions and I am so sensitive I could not tolerate them. He tried so hard to get to the route of the problem for me and I admire him for that.

Praying for you and blessings. Please keep us posted. We care.

I stand corrected. I thought it was part of HIPAA - but apparently, it is part of the AMA Code of Medical Ethics. It's part of "informed consent" - you can't have informed consent unless the patient understands what the doctor is saying. Thank you for the clarification - I wonder where I got those wires crossed.

No problem.

Medical providers hate HIPPA because they have to be very careful about what they say to people so they maintain the patient's right to privacy. Imagine trying to obtain medical information about a patient from a family member or someone else that would know. Theoretically, you can only listen and not explain why you need to know.

"Informed consent" goes out the window in many cases. When a delay in medical treatment can cause harm to the patient, informed consent is often waived.

In some cases it becomes a very difficult situation when the patient is incapacitated or incapable of understanding. Sometimes it becomes a legal decision by a judge. Medical treatment can be court ordered by a judge that doesn't know the patient or anything about the medical treatment being rendered.

All of this is why the durable power of health care and advance directives are so important. These legal documents provide some protection from unwanted medical treatments. In more cases than not it is health care providers trying to protect patients from harming themselves.

Even most doctors don't attempt to treat themselves most of the time. Patients come in and demand treatment they read about on the internet. Some doctors will cave in to the patient's demands even though the treatment makes no sense or there is no medical justification.

My situation was challenging sometimes. I was a nurse who understood things but I still didn't know what to do most of the time. My doctors knew I was a nurse and assumed I knew more than I did.

As a nurse, I was often asked to witness the signing of informed consent documents. I would only be the witness that patients were informed and that they consented. I couldn't guarantee the patient understood the information that was provided to them.

I agree Advance Directives and Durable POA (and Springing POA) are so important. And I do understand that informed consent may not be possible in an emergency. I just worry about the doctors who want to throw medical jargon into the face of the patient, knowing the patient doesn't have a clue; and too often patients are hesitant (or down right afraid) to admit they don't understand or just assume the doctor always knows best.

@curiousgirl2468
I feel for you and can empathize with your experience. You do have a lot going on at such a young age. Keep advocating for yourself and your health and if you are being dismissed by doctors (especially happens to women of all ages) and they are not spending time with you to review symptoms and test results, you need to fire them and get new doctors.

What type of health coverage do you have? Do you have a high deductible plan? Do you have anyone who can come with you to your appointments to help listen/take notes/ask questions to help advocate for you?

Have you read/reviewed all of your own imaging/test results in detail and researched terms so you can try to understand what the results mean (focusing on abnormally high/low results compared to reference ranges)? For those test results where you come close to the high or low end of the range, that may be abnormal for you even if it falls within the range. You should look at your historical test results to see if anything has changed up or down over time.

Here are my responses to your list of health concerns-
•SEVERE Raynaud's (diagnosed myself, doctor didn’t do further testing. Started 2 years ago but more severe in the last year)…My teenage son has this, too. What medications are you taking? Have you been tested for autoimmune diseases by a rheumatologist? Have you seen a vascular/vein specialist and/or cardiologist? It is a spasmodic blood vessel/valve issue. Did you have the mRNA Covid shots or Covid infection? This can damage endothelial cells lining blood vessels. https://www.mayoclinic.org/diseases-conditions/raynauds-disease/symptoms-causes/syc-20363571
•protruding veins- more specifically after Raynaud’s episodes…My teenage son has this happen, too. Similar to response above, you may also want to have them look at POTS. When my son stands up too fast, he gets lightheaded and dizzy and when he raises and lowers his arms (he is 6’ tall and still growing), you can see in real time his veins filling up and emptying with gravity.
•Severe anxiety/depression…My son also has significant anxiety and I struggle with depression. There is a genetic connection. Hormone changes can definitely affect this plus a thyroid issues (I have Hashimoto’s thyroiditis and now hypothyroid).
•Occasional lump in neck near my esophagus that has a popping sensation when I swallow (had imaging done, showed a lump but “size isn’t concerning yet”). This sounds like a thyroid nodule and/or swollen lymph node. Either way, you need to get a copy of the radiology report to see what is detailed by the radiologist as impressions. I had a 2.5 cm nodule on my thyroid that affected my swallowing and speaking at times. You would want to see an endocrinologist to investigate this further. They need to do a full thyroid bloodwork panel which includes TSH, T3, T4, TPO/autoantibodies, etc.
•ADHD…My son has ADHD and takes methylphenidate which can cause Raynaud symptoms. Do you take any medication for your ADHD?
•painful abnormal periods my whole life. Had imaging done and there showed some issues with my ovaries and something to do with lining somewhere (again, no phone call to explain the imaging/results to me and no diagnosis)…This sounds like you may have ovarian cysts, fibroids, endometriosis, and possibly are iron deficient. I also had very heavy and painful periods, was iron deficient, had cysts and fibroids, etc. You need to get the imaging reports and any bloodwork done and review in detail. It would be good to get a new OBGYN who is more thorough and reviews symptoms/test results and treatment options with you. You may need a full iron panel to see if you are deficient. CBC is not enough. You need iron serum, TIBC, Ferritin and % saturation https://www.healthline.com/health/anemia/anemia-blood-test
•major brain fog/memory loss…Need to check your iron levels and thyroid with full bloodwork panels done by specialists. This can cause brain fog.
•rigid brittle nails, sometimes peeling…Thyroid issues can cause this.
•constant peeling lips, also occasional angular colitis…Thyroid may also be behind this. https://my.clevelandclinic.org/health/diseases/22005-chapped-lips
•constant craving for salt…You may want to have an endocrinologist look into whether you have Addison’s disease https://www.mayoclinic.org/diseases-conditions/addisons-disease/symptoms-causes/syc-20350293
•stretch marks even when my body weight isn’t fluctuating- I’m 31 and my weight stays about the same. This sounds like you may have an issue with tissue elasticity and collagen. May need autoimmune testing for connective tissue disease/Ehlers Danlos Syndrome.
•thin stretchy skin…Sounds like Ehlers Danlos Syndrome
•terrible scar healing…Sounds like Ehlers Danlos Syndrome/connective tissue disease.
•very flexible limbs, fingers, toes- my friends and family constantly make comments to me about my flexible hands or the way abnormal ways I sit because it feels comfortable to me (this sounds weird, but it’s hard to explain)…I have this and so does my son. It is hypermobile Ehlers Danlos Syndrome.
•joints pop out of place frequently…hypermobile Ehlers Danlos Syndrome
•purple/blue lips (could be Raynaud’s)…Circulation/Raynauds
•swelling and flushing of the nose…May be autoimmune/Raynauds
•lower back and abdominal pain pretty much constantly…May need ultrasound of kidneys/female organs to see if there are any abnormalities that need diagnosis/treatment (growths/cysts/fibroids/endometriosis). May have PCOS.
•abdominal bloat…Seems tied to female organs and abdominal and transvaginal ultrasound should be able to help with diagnosis and treatment options.

I'm so sorry for all that you're going through. I have to admit there are so many things on your list that were (still are) on mine. It took a long time to get the diagnosis but it was Rheumatoid Arthritis. It's difficult to diagnose. I kept telling my Doctor what I thought it was and he said "I think you had injured your hands and they healed improperly". LOL! He sent me to an Orthopedic clinic for x-rays and they said there was no doubt I had RA. I switched Doctor's-haha. If I can help in any way, feel free to reach out.

Wishing you the best!

Hi, you didn’t list labs that you’ve had already. I think an ANA and if positive then additional testing to rule out Sjogrens , RA, Connective Tissue Disorder, Lupus and a couple more. All can easily be done through lab work.
I’m thinking you had an ultrasound on that lump in your throat. I have a cyst in that area that has been stable, called watch and wait. I get a yearly ultrasound to monitor. You should probably be on a monitoring schedule for that.
I would ask for thyroid tests, ESR and C-reactive protein lab tests as well. You could consider an allergist if your insurance would cover but I’m honestly not sure if they test for drug allergies.
I have over 20 confirmed drug allergies due to symptoms. I’ve asked as well to understand why. I do believe most go through the liver to digest but I mostly get severe side effects. I do think it’s something my dna is missing and that is why.
Keep pushing, you are your best advocate and only one in today’s field of medicine. If they refuse any labs I suggested or you don’t agree I understand.
But, if your PCP just refuses find a new one. I demand tests which some doctors will say no need it’s a waste. I firmly say I appreciate your opinion but I want it. Best of luck. I’m sure some of your anxiety is because you’ve tried so hard for so long and still no answers. Best of luck and keep pushing.

For the depression/anxiety and the question about gene testing. I did GeneSight via my psych. The test doesn't tell the doctor which drug is most likely to work, but might tell them which ones to avoid. Mine told us absolutely nothing. Even drugs that I've had life-threatening side effects from showed I would be a "normal" processor. Last year, after Lexapro and Buspar left me with severe anhedonia, I did a trial of an experimental medication for treatment resistant depression. The depression was so much worse on it I'm surprised I'm still here to type this. I got off Lexapro & Buspar and started microdosing psilocybin (aka magic mushrooms) and now I'm no longer depressed (after decades) and only rarely have anxiety.

With "very flexible limbs, fingers, toes" and "joints pop out of place frequently" my first thought was Ehlers-Danlos. Unfortunately, this is not easy to dx. Do some research and try to find a specialist who can work with you.

With "painful abnormal periods my whole life. Had imaging done and there showed some issues with my ovaries and something to do with lining" my first thought was Endometriosis. I learned in my 20s that I had it and had multiple surgeries to clean it up. Today, if not planning on having babies, they'd probably do a complete hysterectomy like they did for a friend of mine whose was so bad she was in horrible pain.

I hope you find answers.