Need to figure out what's wrong

Hi, @lovelife0723, and welcome to Mayo Clinic Connect. Sorry for all the challenging symptoms you've endured. I’m happy you’ve found this community.

Glad you are going in to see your primary care doctor shortly about this, and we will be hoping for some answers for you. In the meantime, as you don't have a diagnosis for your set of symptoms yet, I'd like to introduce you to some other members who have experienced some of your symptoms in hopes that they might have some thoughts for you.

@anon85335255 and @production675 have discussed parasites.

@kdubois,@angieh, @aman_23_23 @anorexicceliac and @jenapower have discussed unusual rapid weight gain.

@smiles2016, @delicht and @gulfer have talked about constipation.

If I may ask, what did you see in your waste that looked potentially like parasites?

I've seen what looks like worms and they move. A friend of mine has had parasites.. this sounds disturbing so sorry for the "too much information", but I forwarded her a photo of it and she said it looks like parasites, but I've done multiple things to rid myself of parasites and I'm still having these problems. I have done thorough research and I know it's possible they can lay eggs etc, but I'm just unsure this is still the ongoing issue. Tonight I took a nap because I travel extensively, usually drive every other or every weekend so I've been exhausted. Slept for nearly 2 hours and woke up with massive abdominal pain, and not just in the right side like I typically have. It's completely across from left to right and it's so bad I'm hovering in pain and almost in tears. I decided to put a heating pad on it as horrible as that is in the summer, and I'm hovering less. I just don't know what it could be. I'm really concerned about ovarian cancer, or polyostic ovarian syndrome. Thank you for taking the time to answer me.

Hi @lovelife0723, welcome to Connect. I'm so sorry that you've been having these issues, but hopefully we can help find answers.

When you noticed that you started gaining weight, by any chance had you started any new medications? Here's why I ask...

Back in 2004, I experienced unusual, rapid weight gain after starting new medications. At the time, my doctors tested my thyroid and everything came back normal, so they just told me that I was in my early 30s and that it was normal because my metabolism was simply slowing down, but I was sure that gaining 10+ pounds per month for several months in a row was not normal... I mean, my metabolism can slow down, but this was like it came to a screeching halt! Fast-forward 12 years, I had a slew of medical issues, I was 60 pounds heavier, and I was still gaining weight. I felt horrible and none of my 20 doctors at home were helping me. So, I took myself to Mayo Rochester and as part of my care, I asked them to evaluate me for drug hypersensitivity. It ends up that I have what are called drug metabolism polymorphisms. Genetically, I don't properly metabolize many medications, and the meds were causing my symptoms -- including my weight gain issues. The initial culprit for my weight gain was actually Nexium.

Since ceasing the medications I was taking that I don't properly metabolize based on my genetics, I have lost 60 pounds in a very brief amount of time.

No, I don't typically take any medications. I have a high pain tolerance from back pain etc over the years. I've started taking a few herbal things now or detox tea to try to help this problem, but nothing else prior. Thank you for sharing your experience. I hope I get some sort of answer tomorrow and I hope it isn't bad. I'm so stressed out, I've literally spent a chunk of the day crying. It's been awful. Thyroid issues do run in my family, but a little over a year ago I was apparently checked and the results came out saying I had a hyper one, so that's the weight loss one, not the weight gain one.. Then back in march before this problem happened, they tested me and I came back normal and had no more signs of hyperthyroidism, and he said definitely no signs of hypothyroidism. I'm just at a loss that I don't know what's going on and I'm scared. Thank you for sharing and I'm glad your problem had a solution!!

@lovelife0723, you've have a lot of endocrinology tests performed... have you been evaluated by an endocrinologist yet or were these tests evaluated by a primary care physician?

Endocrinology is a very tricky discipline that I fear primary care doctors try to tackle when they should refer. Due to my experiences, Mayo figured out that some hormones in me actually run high by nature and that the standard ranges for these hormones do not apply to me. A doctor outside of the endocrine speciality won't even know that this is possible. Additionally, metabolism issues are traditionally covered by the endocrine specialty.

The genetic system that I referenced above is also used to metabolize many supplements, toxins, and some of our own hormones. You mentioned detoxing. The system I'm talking about is actually called the cytochrome P450 liver enzyme system. Did you start any new herbals, supplements, or detoxes around that time?

My main suggestion: write a journal and take it with you to appointments. For instance, journalize the info you listed above regarding your abdominal pain and how it spread across locations and the timelines -- for each issue you are experiencing, and also document what makes you feel better, such as using heat. (I can't take pain medications due to my polymorphisms, so I also use heat.)

It's extremely frustrating, I truly know. Cry if you need to; that's totally okay and understandable! I had to keep pushing for years to find a resolution to my medical issues, but I did eventually figure it out. Never, ever would I have imagined that I'd recover as much as I have. I am living proof that you can prevail. {{{hugs}}}

Thank you so much for your words, they are powerful and mean a lot. It's nice to be able to talk to someone who understands and cares. What time are you referring to for the detox teas and medicine? Also, mostly my primary care physician. I have been to other doctors, a gastro doctor and neurology and some other specialists in the last year. The journal sounds like a good idea, thank you.

@lovelife0723 If it's one thing I can say, I totally understand what it's like to struggle with medical stuff and feel like you are feeling. You have a virtual shoulder here on Connect to rest your head upon.

Have they tested you for diabetes? Sudden weight gain can be attributed to that, too. This is also an endocrine issue. I think it would be very beneficial for you to see an endocrinologist if you haven't yet.

Did you start the herbal or detox stuff around the time that your weight started increasing? There may be something in your detox tea and herbal remedies that can also affect the body's P450 enzymes. For instance, my acupuncturist wanted me to use a supplement called Udo's Oil, but my pharmacy figured out that it contains Vitamin E, which inhibits the enzyme we are using to metabolize one of my medications and also other supplements.

What kind of doctor are you seeing tomorrow?

Actually no.. the reason I bought the detox tea and herbal medicines to help cure the weight problem. The tea seemed to help stop me from putting on more weight, and the one herbal type thing I started to take helped a little bit, but I still look pregnant. I have not been tested for diabetes as no one in my family has it and this was such a sudden issue. I mean back in march I only weighed 119 pounds, if that. Now I weigh more than I did when I was 9 months plus pregnant. I'll be seeing my primary care physician tomorrow because my insurance changed when I got married, my insurance got better and now my OBGYN and all specialists require a referral. I just feel some of these doctors don't care, and it's so discouraging. I wouldn't have issues like some of these if someone just listened to me last year! 🙁 I'm sorry I'm just so frustrated. Thank you for continuing to be a support system. I really appreciate it.

@lovelife0723, Yes it can be very discouraging, which is why resources like Connect exist. Don't ever apologize for wanting to feel well again. It's too much for anyone to ask. I'm hoping that your appointment today helped you find some answers. Please check back in with us when you get a chance.