I'm having multiple odd episodes that are keeping me undiagnosed. Help

@johnwes5819 Has anyone checked your liver and gall bladder function? The liver produces bile which emulsifies fats during digestion, and it is what gives color to your stool. The bile is stored in the gall bladder and squirts it into the small intestine through the bile duct. If anything is blocking the duct such as gallstones, it will prevent some of the bile from getting through. Gall stones can become huge like the tip of your finger. I don't have them, but a friend of mine has had them and she was very ill before surgery removed them. If the timing of how fast things move through the intestines is sped up, the stool can be lighter. The stool is actually white in color if there is no bile. that of course is a question to ask a doctor because one cause of a blocked bile duct could be pancreatic cancer that is in the area and a mass could compress the duct. I also sent you a message.

Hi, @johnwes5819- thanks for this helpful breakdown of your story down into your most bothersome episodic symptoms. Thanks to @jenniferhunter for the insights. I thought that in addition, you may also be interested in some input from @hopeful33250 @predictable @oldkarl @dawn_giacabazi and @sandytoes14.

Here is the previous post @johnwes5819 mentions, for reference https://connect.mayoclinic.org/discussion/its-been-a-year-and-a-half-im-an-undiagnosed-mystery/.

What symptom are you most concerned about presently?

Thank you for the reply and message @jenniferhunter

This was my result from my hepatic echo.

**
Real-time sonographic examination right upper quadrant obtained. The gallbladder is unremarkable. No gallstones are seen. No biliary dilatation was seen. Common bile duct measures 2 mm. Heterogeneous known uniform echo pattern liver is seen. No discrete focal liver lesions were seen. No solid or cystic lesions were seen. No intrahepatic bile duct dilatation was seen. Findings suggest liver parenchymal disease. Correlate clinically. Pancreas not seen due to bowel gas. No fluid seen right upper quadrant.
**
It made sense that it says "findings suggest liver parenchymal disease" but after seeing two gasterologist/liver specialist, they both agreed it was possible fatty liver which is very common. So there was no more look into the liver.

Hi @lisalucier. Thank you for the reply 🙂

There's not really one that's more concerning than the rest. They all seem to work against me. The depressive episodes I have are really scary but I'm pretty sure it's something in my body that's causing the depression. Most of the doctors I've seen don't have time to further investigate. For instance all of my CT and MRI's show abnormal qualities to me after researching. Some which look like ulcers, lesions or cancer. But when you bring it up to a doctor, they don't want to go through finding a radiologist to look over them again or even look at them themselves.

Something is not right, changes are happening, and my body is on the fritz. I do know that I've always been warm and I would go out in 40-degree weather in a t-shirt because it felt good to me. However 2 years ago when my health declined, my hands and feet are always freezing and I need to bundle up and constantly keep a space heater running at home. I get really bad lower back pain after standing for a while, and then my blood pressure goes high and my heart rate jumps high. It could be a form of pots but I don't faint. It's honestly really hard to figure out which direction to start in. That's why I've been to a lot of doctors. Chasing the symptoms is really all you can do. However, I need a team that communicates.

@johnwes5819 Are they giving you a plan to do something about fatty liver? It can be reversed, and if not reversed it can lead to many problems. It is common these days due to our diet and if left to get worse it can lead to cirrhosis, which is what happened to me. I never had a fatty liver diagnosis, no symptoms, which is typical. It has become such a problem that it is being suggested that it should be screened for if a patient is either overweight or diabetic. When I was finally diagnosed and went to a hepatologist, she said I probably had cirrhosis for 10 years before it presented itself.
JK

Hi @johnwes5819. I am as puzzled as you are about your complex of symptoms. I looked at your other message, and it prompted me to respond right away because what I saw stood out so clearly as a potential problem -- 50,000 International Units of Vitamin D3. That's a very high daily dose of Vitamin D3 and might be the source of several of your troublesome symptoms. I suggest that you have a direct conversation in person with a doctor you trust, first thing in the morning, about the Vitamin D3 dose. Second, you made no mention of what kind of doctors are on your medical team. Given the range of your symptoms and their mysterious relationships, would you consider arranging for thorough examination by an endocrinologist; this could reveal something about your body chemistry that is not now known -- for example, the catecholamines, hormones made by the adrenal glands (epinephrine (adrenalin), norepinephrine, and dopamine). Third, would it be possible for you to undergo a complete examination by Mayo Clinic at Rochester, Minnesota, or Scottsdale, AZ, or Jacksonville, FL? Mayo or a similarly equipped complex of clinics with a history and reputation of patient-directed, full range, diagnosis and treatment would be a good option to consider. We can help you make arrangements with Mayo. Martin

@contentandwell Thanks for the reply. I'm not on any plan for the liver. I was told it was nothing to worry about from 3 different liver specialists. Not really sure what I can do except bother a 4th doctor. This area is really rough for finding superior doctors. But I definitely suspect something is up with my liver given all the symptoms.

@predictable Thank you for the reply. I was given the vitamin D3 at a high dose to get my levels back in range and now it is back in range. However, my symptoms have been the same since before I started the vitamin D3 and nothings gotten worse or better. I would love to go to the Mayo Clinic. Unfortunately, I can't afford it and my insurance has me tied to the state I'm in. I've had lots of labs done and wish there was a way to just send everything over to them but I know it doesn't work that way. I'm in Indiana and there really isn't much out here as far as teams that work together for a patient. It almost sounds like make-believe to have that kind of service out here. So far I've seen 2 cardiologists, 1 electrophysiologist, 3 gastrologist/liver specialists, 2 allergy specialists, 2 therapists, 2 psychiatrists, 1 endocrinologist, 1 hepatologist, 1 urologist, 3 DO's, 3 MDs, and 1 ND.

Luckily through all of this, I've been able to keep my sanity and keeping motivated for answers. I would love to visit the Mayo but financially luck isn't on my side right now. I haven't been able to work in 2 years and disability laughed in my face 3 times.

Well @johnwes5819 I'm in deep sympathy for your feelings of uncertainty about where to turn. Your collection of medical personnel is impressive, but may I ask: Who's in charge? That is, does your medical team have a leader and a communication system to share personal information? Were you referred to that variety of specialists by a personal care physician who does that for a living? I hope we can track down a promising medical practice in Indiana that could offer you the kind of universal diagnosis and treatment that you need. Meantime, your focus and intensity in search of causes and treatments are awesome. There must be a medical service in Indiana that could help you manage and direct your care. Martin

Hello @johnwes5819

I'm inclined to agree with Martin. @predictable, that a consult with an endocrinologist might be helpful. Some of your symptoms sound like a problem with your parathyroid (different than the thyroid, but in a similar location). You might ask specifically to have a blood test done to check on the parathyroid hormone levels. I would also encourage you to seek a second opinion at a Mayo facility or at the very least a university medical center with a multidisciplinary approach.

I hope you find some answers. Will you post again?