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

Posted by johnwes5819 @johnwes5819, Mar 10, 2019

Hello,

I posted before in another group in its entirety but I think it’s too broad and there could be a multitude of theories and explanations. So I’m going to break my story down into my most bothersome episodic symptoms. To start, everything on the surface looks like panic disorder or anxiety. However, my different episodes seem to be helping each other keep me feeling frantic more days than not so on the surface it looks like anxiety. I’ve had lots of lab work testing including thyroid, Lyme, sleep apnea home test, brain MRI, spine MRI, abdominal ct scan, and way too many doctor visits with no answer, but they do agree on one thing. The symptoms are weird and seem to be more than just anxiety. There are little bits here and there but unfortunately not enough to go on.

Keep in mind these episodes aren’t all going on at the same time but they’re not giving me any recovery time and feel like i’m sinking further down the hole. It’s like fighting 5 bullies one at a time and losing. Just as you feel like you can get up another bully hops in.

Episode 1: After waking up with head pressure, teeth chattering, shivering, lower back pain, and sweating. Oral temperature is ALWAYS between 93.8 F and 94.8 during these episodes. Also, every day is constant cold hands and feet that never happened until all of these episodes started.

Episode 2: Brain fog, head pressure that feels like you’re being pushed down when standing (like when you’ve had one too many drinks), usually later in the day when that feeling wears off, I’ll have adrenaline body tingling, uncontrollable thoughts of self-harm and head chatter. (Not dwelling on things or worried about things, it’s just the mind doing what it does and I have no control.) Also, my eye will twitch like crazy before and during these.

Episode 3: When standing for a long period of time, like cooking or washing dishes, and sweating starts to happen my heart rate increases and get extremely dizzy and feels like I’m being physically pulled down.

Episode 4: An overly excited feeling, almost like needing to yell or run to get adrenaline out, Heart rate is low.

Episode 5. Sharp colon pain, yellow stools (frequently), stools that look sickly or unhealthy, and constipation more often than not. I had a colonoscopy recently and I was told everything looks good.

I’ve tried SSRI’s and benzodiazepines and they don’t stop these episodes from occurring. I’ve tried strict diets and those don’t help.

If you have any thought about even one of these episodes please don’t be shy to comment. Thank you so much for taking the time to read.

@hopeful33250

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?

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@hopeful33250 Thank you for your reply. I would like to speak with an endocrinologist. I had visited one that needed a referral but I needed something wrong in order to be referred. So my doctor used the low vitamin D diagnosis as a reason to see him last year. Well after visiting, he said my labs looked fine and his daughter that quit college because of anxiety and depression had the same symptoms as me. So he was biased because of his daughter. He gave me a number for a psychiatrist and that was it. No further testing, no extensive work up. Just "your labs from your other doc look fine except for vitamin D, take a vitamin D supplement, and call this psychiatrist, take care". I've never been to another endo since. That was in March of last year. I would love to visit the mayo or university but my insurance kind of has me tied down to Indiana.

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@contentandwell

@johnwes5819 If there is a chance that you have fatty liver you really should see a hepatologist. If that is impossible, at the very least look it up and find out what you should not be eating/drinking. I wish mine had been discovered sooner so I could have avoided cirrhosis and a liver transplant.
The university of Indiana has a liver transplant program so I am sure there must be hepatologists there and other gastroenterologists. Is that anywhere near you?
JK

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@contentandwell I can try another liver doctor but they tend to think I'm wasting my time.

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@contentandwell

@johnwes5819 If there is a chance that you have fatty liver you really should see a hepatologist. If that is impossible, at the very least look it up and find out what you should not be eating/drinking. I wish mine had been discovered sooner so I could have avoided cirrhosis and a liver transplant.
The university of Indiana has a liver transplant program so I am sure there must be hepatologists there and other gastroenterologists. Is that anywhere near you?
JK

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@contentandwell The University of Indiana is about 3 hours south of me. However I don't have any tests that raise concern other than the Hepatic Echo that says Parenchymal liver disease but it's broad. My AST and ALT are normal and I'm not jaundice. There's not much to go on to get me through the door.

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@johnwes5819

@hopeful33250 Thank you for your reply. I would like to speak with an endocrinologist. I had visited one that needed a referral but I needed something wrong in order to be referred. So my doctor used the low vitamin D diagnosis as a reason to see him last year. Well after visiting, he said my labs looked fine and his daughter that quit college because of anxiety and depression had the same symptoms as me. So he was biased because of his daughter. He gave me a number for a psychiatrist and that was it. No further testing, no extensive work up. Just "your labs from your other doc look fine except for vitamin D, take a vitamin D supplement, and call this psychiatrist, take care". I've never been to another endo since. That was in March of last year. I would love to visit the mayo or university but my insurance kind of has me tied down to Indiana.

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I can certainly understand the restrictions made by insurance companies, @johnwes5819. Does Indiana have any medical schools that you could visit?

If not, I would at least research a very experienced endocrinologist that your insurance would cover.

The one clue you have provided that might indicate hyperparathyroidism is the kidney stones.

Once again, going back to the "Sherlock Holmes" comparison, you will need to do some research on your own. In other words, be your own detective in solving this medical mystery you find yourself experiencing.

Here is some information about hyperparathyroidism, https://www.mayoclinic.org/diseases-conditions/hyperparathyroidism/symptoms-causes/syc-20356194. You might also research hyperparathyroidism using "Google Scholar." Read these and see how many symptoms you have that apply to your current situation.

Once you get enough research together, then I recommend that you see a new endocrinologist and take your symptoms and your research and ask for a more thorough work-up. Being your own patient advocate will be your best approach at this time.

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@johnwes5819

@predictable Thank you for your sympathy. it started with me jumping through the hoops of a primary care doctor sending me to a psychiatrist. I tried 6 months worth of antidepressant medications that made me feel worse overall. With no background in medical but someone that has a great grasp on learning new information. I took it upon myself to read 100's to 1,000's of the long boring mayo clinic assays that nobody fully reads but I did. I started with biochemistry, then cellular biology, and so on. When I went to see the psychiatrist for a 7th prescription to try, I asked her about vitamins and the precursors to serotonin. She basically said, "none of that matters" that's when I knew the doctors I was seeing were cookie cutter doctors that belong at band-aid hospitals. So I had to research for myself. Because of my random adrenal surges that didn't seem to have a rhyme or reason, I had my cardiologist check my urine for catecholamines to exclude pheochromocytoma and I've been at this journey by myself. I have an ND right now who's work with me but it's been a slow process. I've only been seeing her for a few months. There hasn't been one doctor in charge because they either run out of ideas or my issues are just too complex. I would love to have a captain of the ship but for right now it's just me. Most of my doctors have told me I'm more knowledgeable than their students. I really don't want to know any of this stuff I just want to fix myself since none of the doctors are.

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Two quick responses @johnwes5819, then off to town for the morning. First, the collection of doctors doesn't form a team without a communication system and a respected professional who wants to lead and will bring all the others into line. In my case, the team was ready to form within staff of the HMO. Second, your personal expertise — developed with a lot of research of the possibilities — has the potential to track down causes of your symptoms, but it also accompanies you as an encyclopedia when you visit a doctor whose practice is highly focused and comparatively narrow. In this case, consider keeping your questions to those that the doctor is likely to have an answer for; s/he understands what you're talking about and have studied, but needs to reframe her/his approach and undertake a novel or obsolete diagnosis and treatment. One answer to this is, as Teresa @hopeful33250 said, a university medical center with a multidisciplinary approach. Martin

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@johnwes5819

@contentandwell The University of Indiana is about 3 hours south of me. However I don't have any tests that raise concern other than the Hepatic Echo that says Parenchymal liver disease but it's broad. My AST and ALT are normal and I'm not jaundice. There's not much to go on to get me through the door.

Jump to this post

@johnwes5819 If you trust your doctor and have confidence in him/her then I guess your questions are answered. If you are feeling a lack of confidence at all though you should see a hepatologist. If you have a diagnosis of fatty liver you do need to make diet modifications to reverse it.
I am not a medical person so I do not want to give you medical advice, I only know my own situation — AST and ALT not terribly elevated, and never had jaundice!
JK

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@hopeful33250

I can certainly understand the restrictions made by insurance companies, @johnwes5819. Does Indiana have any medical schools that you could visit?

If not, I would at least research a very experienced endocrinologist that your insurance would cover.

The one clue you have provided that might indicate hyperparathyroidism is the kidney stones.

Once again, going back to the "Sherlock Holmes" comparison, you will need to do some research on your own. In other words, be your own detective in solving this medical mystery you find yourself experiencing.

Here is some information about hyperparathyroidism, https://www.mayoclinic.org/diseases-conditions/hyperparathyroidism/symptoms-causes/syc-20356194. You might also research hyperparathyroidism using "Google Scholar." Read these and see how many symptoms you have that apply to your current situation.

Once you get enough research together, then I recommend that you see a new endocrinologist and take your symptoms and your research and ask for a more thorough work-up. Being your own patient advocate will be your best approach at this time.

Jump to this post

@hopeful33250 Yes it's very difficult with the insurance restrictions. Indiana has Indiana University but from what I've read they don't operate as Mayo or Cleveland clinic does. https://iuhealth.org/

I've been doing research on my own and I certainly can see how hyperparathyroidism comes to mind. I had calcium and PTH done and those were in range. I will definitely do more research though. Every doctor I've seen says "Your tests are very thorough and well thought out, who's your doctor?" and I always answer "me". because most of the tests were demanded by me sadly I would love to work extensively with an endocrinologist but I've had bad experiences just like with other specialty doctors. Maybe the Mayo Clinic could be a possibility for me someday but financially it's unfeasible for me right now Thank you so much for your advice and thoughts. I really appreciate it all. 🙂

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@predictable

Two quick responses @johnwes5819, then off to town for the morning. First, the collection of doctors doesn't form a team without a communication system and a respected professional who wants to lead and will bring all the others into line. In my case, the team was ready to form within staff of the HMO. Second, your personal expertise — developed with a lot of research of the possibilities — has the potential to track down causes of your symptoms, but it also accompanies you as an encyclopedia when you visit a doctor whose practice is highly focused and comparatively narrow. In this case, consider keeping your questions to those that the doctor is likely to have an answer for; s/he understands what you're talking about and have studied, but needs to reframe her/his approach and undertake a novel or obsolete diagnosis and treatment. One answer to this is, as Teresa @hopeful33250 said, a university medical center with a multidisciplinary approach. Martin

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@predictable I know, I wish I had a team that communicates but unfortunately my city is surrounded by large hospitals that specialize in different expertise and they just don't communicate. It's just how it is. Your level of care is something I definitely dream about. I've been keeping my requests for tests well thought out and researched. I've had to be my own communicator to each doctor sadly because they won't do it themselves. I would love a multidisciplinary approach. https://iuhealth.org/ That's the only thing I have and even though they're a university, I don't think they operate as Mayo does. They have specialty departments but from what I've researched it's not a team overseeing the care of one patient. That is certainly what I need though.

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@contentandwell

@johnwes5819 If you trust your doctor and have confidence in him/her then I guess your questions are answered. If you are feeling a lack of confidence at all though you should see a hepatologist. If you have a diagnosis of fatty liver you do need to make diet modifications to reverse it.
I am not a medical person so I do not want to give you medical advice, I only know my own situation — AST and ALT not terribly elevated, and never had jaundice!
JK

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@contentandwell I trust my doctor but she, to me, is a small fish in a big pond. I believe she knows things but isn't as up to speed as I would like and this is many many doctors later. I wasn't diagnosed with fatty liver, except one liver doctor saying the parenchymal liver disease found in the ultrasound "could" be fatty liver. The others said it's nothing to worry about, you're good. However, the doctor that did mention "could be fatty", has not made an effort to move forward and he made it sound like a biopsy is a waste of time and then there is bleeding potentially in the future. Not sure why but it was brushed under the rug.

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I feel your pain. I'm going through this myself. I freak out. I feel like loosing the battle but also know that it's our mind. Only one that can control its us . Dont let it control you. Stay positive.

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A couple of quick thoughts: Are you taking ANY prescription or over-the-counter medications? I am appalled at how many doctors ignore unusual or even known side effects of drugs ( for example, proton pump inhibitors and even H2 blockers can have a host of side effects – i'm not suggesting that's your problem but I would certainly first want to know any medication, even OTC, you are taking). Have you been tested for parasites? (I have seen normal tests in someone had strange symptoms that ended up being a rare intestinal parasite.) My only other quick thought is to ask if you have received autonomic testing (tilt table) for dysautonomia, which can cause many of your symptoms.

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I suffer from anxiety and have had some of your issues. Are you on any meds that could be creating this? Or any meds changing? Thyroid been checked? Severe anxiety can really play havoc on your system, good luck🙏🏻

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