Today was my follow-up appointment with my gastroenterologist, and it was an extremely productive appointment! My GI doc is my favorite doctor, by quite a lot. They’re the most awkward subject matter, but they’re always productive and my doc refuses to give up on me. It’s a very refreshing change from how most doctors treat my cases.
Anyway, the follow-up was in regards to my HIDA scan. When I had called the office, right after the scan, I was told it was normal and my ejection fraction was 95%. Of course, I tried to research it after I got the results! I couldn’t really find any studies, except a very tiny retroactive study that suggested that a “hyperkinetic gallbladder” (anything over 80% apparently) could also cause pain. This pain was hypothesized to be caused by the gallbladder squeezing too hard and fast. I mostly just found medical chat forums where a bunch of patients had similar symptoms to myself and a few were going to be trying to find someone to remove their gallbladder. When I asked my GI about it today, however, he said that the “hyperkinetic gallbladder” thing is mostly just talked about on rare occasions and hasn’t really been studied. He doesn’t think that any of my symptoms are tied to my gallbladder, as it does work VERY well. He also doesn’t think I’d really be able to find a surgeon that would remove it since it hasn’t been studied at all; which I don’t want to do anyway, since it’s actually functional. (There aren’t really any dietary changes that I can make, at least not that he’s aware of, that will calm it down.) On a positive note, I will likely never develop gallstones thanks to it always emptying 😛
He is now almost positive that I have developed gastroparesis. Gastroparesis, according to Mayo Clinic, “is a condition in which the spontaneous movement of the muscles (motility) in your stomach does not function normally;” essentially, paralysis of the stomach (either partially or completely depending on severity) that causes delayed emptying and incomplete digestion of food. Because of this, we are going to do a gastric emptying study. He said that it will take about 3 hours. I just have to eat some slightly radioactive eggs or oatmeal and then we scan periodically to see how fast my stomach is emptying. I imagine it will be relatively boring for me, so I will be sure to bring a book! Hopefully, I won’t start glowing 😛 (I’ve had so many scans, xrays, and radioactive dye tests that I feel as though I should be glowing due to being radioactive LOL!) I’m hoping I don’t have gastroparesis, but if I do at least I’ll have some answers.
I also need to setup an appointment with the dietitian that works in the same clinic. My GI doc wants the dietitian to do LEAP testing. LEAP stands for “Lifestyle Eating and Performance” (from what I can find, anyway, most things just refer to it as “LEAP” and don’t ever spell it out… annoying). From what I understood from my doctor, and a cumulative deduction from my reading, it’s a very elaborate blood test that will show food sensitivities and allergies. It sounds like it will do it on a scale, from sensitivity to true allergy, and then the dietitian can help me build a diet that will work for me. The one website I found that gave details about the testing, said that true allergies are usually avoided, and that sensitivities are usually done on a rotation diet (like I’m doing, and being annoyed by, now). Dr S (my GI) thinks that finding my allergies and eliminating them might fix a lot of my GI issues, as well as many more of my immunity issues. I’m hoping that, at the very least, the dietitian can help me find a more effective, more balanced, and easier to execute diet!
When I mentioned that my eosinophilic esophagitis (EoE) flared up due to a cold/infection that I got in my throat mid October, and that it hasn’t calmed down since, Dr S was rather concerned. So we’re going to double my ranitidine until I see him again. Hopefully, this will help. He also wants me to discontinue the cromolyn sodium that I was given by Dr N (the allergist I had originally seen for food allergy stuff, but that I decided I wasn’t fond of and stopped seeing). The cromolyn doesn’t really seem to help much, and Dr S said he has never prescribed it before, for anything! Because it doesn’t seem to help much, and I take so many other medications, he figured it is better to eliminate some of the chemicals I’m ingesting. I have to say, it makes perfect sense and I’m just hoping it doesn’t cause any problems. I’m glad that I won’t have to take this medication, as it’s really annoying. I have to mix it with a little water, and then wish it around in my mouth, gargle, and swallow it so it coats everything; then I have to wait for 15 minutes before I can eat or drink anything else. It’s annoying and I always forget to do it with enough time.
I’m also getting several blood tests done!
Lately, I have been having some serious symptoms that point to hypoglycemia (and relatively bad hypoglycemia). I wake up feeling crappy and HAVE to eat almost immediately or I start to get dizzy and shaky. If I go too long without eating, I start to get extremely shaky, nauseous, my body temperature goes wonky, and I get super irritable. If it goes too long, I get a nasty headache. The nausea gets so bad that I struggle to eat, but when I can finally choke down food, I’ll start to feel better. It took quite a few of these episodes to realize it was connected to food, and Dan actually made the connection first. I actually ended up having a terrible reaction to my Tramadol that I think was also tied to blood sugar: I ate breakfast at 6:30am, went to physical therapy from 8-9am, then came home and took a Tramadol at 10. I was freezing cold, and decided to call my mom and chat. About noon, I suddenly started to feel horribly sick! I very suddenly got boiling hot, and removing all the layers (except my base layer) did nothing for me. I was sweating profusely (something I don’t actually do very well, so it was kind of odd), and I was getting disoriented. I was shaking like a leaf, and was extremely dizzy (I had a very hard time walking). My heart also felt weird, as if it was speeding up really fast and then suddenly slowing way down, but I couldn’t focus enough to realize I should probably put on my pulse-ox to check what it was doing. I couldn’t focus on the conversation, and my eyes wouldn’t even focus completely. Something in me told me I needed to eat something, so I grabbed an Ensure and choked it down. Choked is literal in this case. Every sip I would gag due to the nausea, but I eventually got it all down. After a little while, I finally started to feel better. But that evening I got a killer six hour migraine and was unable to get anything down until after 10pm, and it was just crackers and ginger ale. I’m not going to be taking Tramadol again without first eating a rather significant amount of food first. After some research once I was feeling better, I learned that Tramadol has been linked to severe hypoglycemic incidences (needing hospitalization), some of which were fatal. Now, this link is correlational, not causal (meaning it hasn’t been proven that Tramadol caused the hypoglycemia, just that these episodes correlated with the use of Tramadol). The write up about the study can be found on WebMD. Now I know if I feel like that, I should probably go to the ER. (In hindsight, I shouldn’t have needed to research it to figure that out… those symptoms were really severe.)
I also asked if he thought that my potassium might be low. I was looking in my “Encyclopedia of Natural Medicine” (it was a textbook for a class I was taking, but then had to drop due to life, but I kept the book because it’s fascinating and quite useful), for stuff related to magnesium for an Instagram friend, and it mentioned that potassium and magnesium can have impacts on blood pressure. So I went to the blood pressure section and it mentioned that potassium can be used to treat high blood pressure, and can be especially useful in treating diastolic blood pressure (the bottom number). Diastolic blood pressure is my main problem. My systolic blood pressure remains fairly normal, and rarely gets high, but my diastolic quite frequently goes up to 90, which isn’t normal. All blood pressure medications focus on systolic (I asked). When I mentioned the link to my cardiologist, he dismissed it by saying it was rare to have low potassium, even though I mentioned I barely eat most of the time. When I mentioned it to my GI, he found my concerns valid.
Because I have been having so many issues with eating, he decided that instead of just doing my fasting glucose and potassium, he was going to order a whole fleet of tests:
- TSH – this test is used to evaluate thyroid function
- Phosphorous, serum – this is usually done with other tests and can be used to help diagnose many different conditions (either a high or low level can be indicative of many different disorders)
- Complete Metabolic Panel (14) – this test will look at a LOT of things
- glucose and calcium
- proteins: albumin and total protein
- electrolytes: sodium, potassium, carbon dioxide, and chloride
- kidney tests: blood urea nitrogen and creatinine
- liver tests: alkaline phosphatase (ALP), alanine amino transferase (ALT), aspartate amino transferase (AST), and bilirubin
- Magnesium, serum – this is also usually done along with other tests and can be used to diagnose several conditions (much like the phosphorous test). Hopefully, this test won’t show abnormal levels, since I take a magnesium supplement right now (which I feel has been helping my fibromyalgia). I’m very interested in these results.
- Complete Blood Count (CBC) with Differential/Platelet – this is a general wellness test. It will show how many of each type of blood cell I have, what exactly my white blood cells are doing, and how my platelets are doing. I’m also quite interested in these results, as they can point to any underlying infections/inflammation and might explain why I’m bruising so easily and have such heavy periods. Hopefully, it’s nothing too serious.
- Glucose, serum – this is the test that will be used to see if I’m having hypoglycemia issues or anything else going on with my blood sugar. I’m extremely interested in these results, as I’m wondering if that’s what is happening.
Obviously, I’m interested in all the results (I’ve always found blood work interesting). I’m hoping that it won’t show anything too serious, but I’m excited to potentially get some answers. This is the most comprehensive blood testing I’ve had in a VERY long time!
As you can see, this was a very successful appointment! This is why Dr S is my favorite doctor. He’s so open to helping me, even when it isn’t his area of expertise. At the end of the appointment, I apologized for being so complicated (I hate feeling like a burden, I know I shouldn’t apologize, but it felt necessary)… and he said it was just a challenge and it wasn’t a problem! He made it sound like it was kind of a fun mental exercise, which I’m very glad about 🙂 Several other doctors have seemed irritated by my complexity, but I’m so glad at least one of them isn’t! I really wish I could clone him and make him specialize in every different thing that I need 😛 Oh well, at least I have him for my most embarrassing issues!