MikeO Posted June 16, 2023 Report Share Posted June 16, 2023 Docs Notes below. That's all i have for now. all i ever wanted was plain old orthostatic hypotension. now one more item to potentially to deal with. Plan: The patient was alerted that his laboratory studies confirm a diagnosis of diabetes mellitus; based on the results of the glucose tolerance test as well as his glucose pattern noted in his reported glucose self-monitoring. Laboratory studies were ordered to screen for latent autoimmune diabetes of the adult; including GAD antibody, islet cell antibody and insulin autoantibody. The patient was advised regarding the need for evaluation by gastroenterology as he reports symptoms highly suggestive of malabsorption; raising suspicion for chronic pancreatitis; which could also predispose him for insulin deficiency. Further recommendations; pending review of the results. He will tentatively return for follow-up in 4 months. Meanwhile, he was advised to report his glucose readings as needed for review and further recommendations regarding management of diabetes mellitus. Quote Link to comment Share on other sites More sharing options...
Pistol Posted June 16, 2023 Report Share Posted June 16, 2023 @MikeO it simply means that you need to get checked by a gastroenterologist, to make sue you DONT have those problems. It does not mean you HAVE them. Quote Link to comment Share on other sites More sharing options...
MikeO Posted June 17, 2023 Author Report Share Posted June 17, 2023 2 hours ago, Pistol said: @MikeO it simply means that you need to get checked by a gastroenterologist, to make sue you DONT have those problems. It does not mean you HAVE them. Thank you. You are so kind. Mike Quote Link to comment Share on other sites More sharing options...
Macho319 Posted June 17, 2023 Report Share Posted June 17, 2023 I agree with Pistol. This is not a definitive diagnosis of pancreatitis. This is just a recommendation to see your GI docs to further evaluate your ongoing symptoms. Let’s hope this is not pancreatitis and something easily treatable or managed. Well wishes sir. Quote Link to comment Share on other sites More sharing options...
Jyoti Posted June 17, 2023 Report Share Posted June 17, 2023 4 hours ago, Macho319 said: This is not a definitive diagnosis of pancreatitis Absolutely true, but still.....some days the mountain of things wrong with us feels utterly overwhelming. When I was diagnosed with ME/CFS I thought--good. This reflects my reality and I am happy to know this. But heaven forfend--I will NEVER have POTS like so many others with ME/CFS. (I do.) And then....MCAS can't apply to me--I m totally unallergic to everything. (It does.) My connective tissue is failing and my neck doesn't hold up my head. And so on. @MikeO's litany is a little different to mine, but I totally relate to that sense of ....what next? Is this not enough to deal with???? Many of the things that loomed for me have turned out not to be issues....may that be the case here! Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted June 18, 2023 Report Share Posted June 18, 2023 I hear you Jyoti, it seems like I have a new symptom and new systems affected every &*#@ week! I’ll add severe uncontrolled RA to my list. The Dysautonomia and POTS are Much worse than my RA! I also have multiple GI issues. Had to stop my Humira 6 months ago when my liver and pancreatic enzymes went way up. My GI tract seems to process food differently EACH day? Good grief! Seeing my GI doc next week. Hoping Liver and Pancreas are well enough to restart an RA med as it’s eating my joints! Started my POTS exercise program today! Did well. Hardest for me is fighting the hypovolemic POTS. SOME DAYS YOU JUST DON’T FEEL LIKE DRINKING 3 gallons of fluid! Good luck with your Pancreas! Quote Link to comment Share on other sites More sharing options...
MikeO Posted June 19, 2023 Author Report Share Posted June 19, 2023 @MaineDougsorry to hear about your RA. I know exactly what you're talking about seeming that we get a never ending stream of issues. I am pretty confident the GI doc will find something just not sure what right now. out of all the things i have done to improve my other symptoms my GI still gives me issues. Glad you are starting a exercise program. you will benefit trust me. may not seem like it at first but over time you should see a noticeable benefit. Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted June 26, 2023 Report Share Posted June 26, 2023 Thanks MikeO, My enzymes were much better! GI tract better, thanks to hydration. I’m on day 3 of the CHOP and it’s challenging but feeling good to make progress. I’m experiencing bad sweaty hot flashes an hour after semi recumbent bike sessions, I have to strip down and lay flat in front of the AC for an hour to recover! Then I’m cold of course LOL! POTS is an adventure! Leaving for NYC Sunday to see a new Rheumy at the Hospital for Special Surgery. Very excited! My previous Rheumy ABANDONED ME, I think the POTS symptoms confused and scared her! 🤣 I’m not “mad” at her although being dumped didn’t feel right. But nice opportunity to get to a World Class center and up their game. I need to get back on RA meds, it’s unleashed and running amok! My conditions tend toward the complex and severe. Sincerely, Doug Quote Link to comment Share on other sites More sharing options...
MikeO Posted June 27, 2023 Author Report Share Posted June 27, 2023 @MaineDougTotally get the hot flashes...been there Lol. Hopefully the new Rheumy provider can help, have my fingers crossed for you. My faint clinic tried to dump me about a year or so ago and told me to go to the Mayo clinic (not going to happen) and you are right did not feel good. Keep up with the exercise! Quote Link to comment Share on other sites More sharing options...
MikeO Posted September 25, 2023 Author Report Share Posted September 25, 2023 well went in to my endo visit today. he did put me on a low dose trial mealtime insulin just so i can eat what i should be. Clinic did pull down the data i collected on my BGM's and they could see the meal time spikes and even when i would eat. all i can say is collecting data helps. he still suspects a GI issue and a pancreas problem. we hope that gastro can ferret some of this out. we did discuss dysautonomia and he is on board that it can be messing with me. endo did mention that i am unique as did my cardiologist and primary (sigh) Insulin pen is scary but so was pricking my fingers sure i will adjust. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted September 27, 2023 Report Share Posted September 27, 2023 @MikeO, I hope the insulin helps. Do you use the pen on your thigh? I admire your data collecting. I need to get better at that. Quote Link to comment Share on other sites More sharing options...
MikeO Posted September 27, 2023 Author Report Share Posted September 27, 2023 @Sarah TeeThanks! I have been injecting in my abdomen. i do get a feeling i might run out of real estate before the poke marks heal up. Quote Link to comment Share on other sites More sharing options...
Pistol Posted September 28, 2023 Report Share Posted September 28, 2023 23 hours ago, MikeO said: i do get a feeling i might run out of real estate before the poke marks heal up. @MikeO have you considered rotating injection sites between thighs and abdomen? Like right belly, right thigh, left thigh, left belly? Quote Link to comment Share on other sites More sharing options...
MikeO Posted September 28, 2023 Author Report Share Posted September 28, 2023 16 minutes ago, Pistol said: @MikeO have you considered rotating injection sites between thighs and abdomen? Like right belly, right thigh, left thigh, left belly? yes i will end up doing this. still getting over the poking myself with a needle. Quote Link to comment Share on other sites More sharing options...
MikeO Posted September 28, 2023 Author Report Share Posted September 28, 2023 10 hours ago, MikeO said: yes i will end up doing this. still getting over the poking myself with a needle. Well @Pistolsaw my primary today he says no to the thigh insulin pokes. i don't have enough fat on my legs. Quote Link to comment Share on other sites More sharing options...
Jyoti Posted September 29, 2023 Report Share Posted September 29, 2023 So sorry you have to deal with this....on top of everything else!!! Quote Link to comment Share on other sites More sharing options...
MikeO Posted September 30, 2023 Author Report Share Posted September 30, 2023 14 hours ago, Jyoti said: So sorry you have to deal with this....on top of everything else!!! Thanks Jyoti. it's ok only thing is it seems that the insulin is making me constipated. Quote Link to comment Share on other sites More sharing options...
MikeO Posted October 18, 2023 Author Report Share Posted October 18, 2023 Finally went in to the gastroenterologist. visit went well. Did labs right after the visit TTG,CRP,Liver panel and lipase. Aced the blood work but still have to provide a stool sample. The Dr's initial feeling based on symptoms is that i have SIBO. so to help she suggested using beano or gas-x to help with the bloating. she also is looking at using a selective antibiotic but wants to wait till stool sample results comes back. More to the story still coming Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted January 13 Report Share Posted January 13 Just Ughhhhh, What goes around…just got my stool labs back, severe Pancreatic Insufficiency. 🥺 No wonder I’ve had years of digestive issues. Another diagnosis. Another round of docs, tests, meds, suffering. Just Ughhhhh Quote Link to comment Share on other sites More sharing options...
MikeO Posted January 13 Author Report Share Posted January 13 1 hour ago, MaineDoug said: Just Ughhhhh, What goes around…just got my stool labs back, severe Pancreatic Insufficiency. 🥺 No wonder I’ve had years of digestive issues. Another diagnosis. Another round of docs, tests, meds, suffering. Just Ughhhhh My endo still suspects some pancreas issue (SIBO provoked he does not know) so more for gastro albeit i tested negative for what they tested for. So sorry for the PI diagnosis but at least there is a path forward. Wish you the best! Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted January 13 Report Share Posted January 13 @MikeO, Thanks. I do have a good GI doc, he’s working to get me in urgently next week. I’m feeling more than a little overwhelmed. It’s just one diagnosis after another. And frustratingly, another example of me giving the docs a textbook case and getting a decade of shrugs followed by urgency. My Endocrinologist was close. After my last Prednisone weaning failure he hypothesized that there was an underlying condition causing the signs and symptoms. Maybe adjusting my enzymes will enable me to finally wean off Prednisone? Always hoping that the light is help instead of a train! Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted January 18 Report Share Posted January 18 I started my new life with Creon! 72 hours after being diagnosed with Exocrine Pancreatic Insufficiency(EPI), due to the heroic efforts of two pharmacy teams, who worked for 8 hours to authorize, process, ship and deliver (driving 400 miles from Massachusetts to Maine, through a blizzard) to me the PERT (Pancreatic Enzyme Replacement Therapy), “Creon”! Creon isn’t a medication, it’s filtered, formulated enzymes from Porcine Pancreases. PERT is essential for life for people with EPI. The alternative is an extremely painful wasting death. But thanks to Creon I “absorbed” my first meal tonight in more than a decade! It should quickly reverse my malabsorption and the effects of malnutrition should begin to improve. I’m hoping to see improvement in my vision, hearing, cognition, muscle weakness and pain, and other symptoms! I wish to give my sincere thanks to the Pigs lose their lives and pancreas so that I might live. Quote Link to comment Share on other sites More sharing options...
Pistol Posted January 18 Report Share Posted January 18 😊🤗🥳 So happy to hear! Best wishes to you! Quote Link to comment Share on other sites More sharing options...
MikeO Posted January 18 Author Report Share Posted January 18 @MaineDougjust fantastic to hear that your first dose of CREON made a significant improvement! hope the treatments resolves many of your symptoms moving forward. Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted January 18 Report Share Posted January 18 @MikeO, Thanks MikeO, I continue to be much improved. However, I have become horrified to discover that, during an Emergency visit last 11/24/23, 14 months ago, buried deep in the chart, a CAT scan result stating “PANCREAS: Atrophic.” 😳🤬😱 They knew! THEY SHOULD HAVE KNOWN! No one ever said ONE WORD to me about an “Atrophic Pancreas” or anything remotely similar. IN FACT THEY DISCHARGED ME, in pain. They left my Pancreas inflamed and barely functioning. They left my health to spiral downward. THIS IS NOT A BENIGN DIAGNOSIS! My health is permanently impacted, the organ will not recover. They have put me at very high risk of the dreaded Pancreatic (very bad work I don’t want to type)! ALL MADE WORSE BY THE DELAY 🤬 HOW COULD THIS HAPPEN???😰 Quote Link to comment Share on other sites More sharing options...
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