Sick and Tired of being Sick and Tired

[Eeyores Butterfly]

This is my first time posting on this board though I have followed several posts here and have prayed for several people.

A bit of background: I am 24 years old and very active. I am a former competitive dancer and did two entertainment CP's with Disney where I performed in various shows and parades (pics in my WISH journal).

In September I was diagnosed with prediabetes. As you can imagine it has been very difficult. This may not sound PC, but I thought to get diabetes at my age you had to be obese pretty much your entire life and very sedentary. Until college I never weighed over 100 lbs. Yes, I gained weight in college (and believe me, hitting the "triple digits" as I think of them was a huge blow psychologically), but I was never overweight. Merely toward the upper end of the spectrum for my height. I joined Weight Watchers but was never very serious about it because it was more vanity pounds and not wanting to become overweight.

I had a pretty good handle on things until I left my last College Program. Going from 5 parades and shows a day to sitting in a classroom with no adjustment of eating habits on my part yielded predictable results. I did become overweight, even obese by the clinical standpoint (I hate that word) but do not see myself as an obese person. In fact, most people don't understand why I want to lose as much weight as I do. The weight gain has only been in the last two years, so being told I had prediabetes was a shock.

The assumption is that I am on my way to Type 2 diabetes. This makes no sense to me. Yes, I am overweight, but I am still an active person. I have absolutely no family history of diabetes. I also think the doctor has missed the mark. I frequently have readings as high as 280, which means that it is not prediabetes but some form of full blown diabetes. My cholesterol is high, but that is hereditary and could be related to my blood sugar. My blood pressure tends to be on the low end of normal, so it's not metabolic disorder.

My current doc has never even heard of type 1.5 which I strongly suspect I have. In a few short months I have gone from being 180 after meals to 280. Other than my weight I have not one risk factor. I think part of me wants it to be 1.5 because then it is not my fault. I was not too stupid or lazy or fat. It was simply a bad roll of the genetic dice. If it is type 2, I brought it on myself and deserve to have it and that has been a tough pill to swallow.

On top of that I have been experiencing some serious stomach problems. Cramps so bad I can't stand up, alternating diarrhea/constipation, bloating, gas, feeling full within a few bites. I'm being told possibly celiac or IBS. First doc only ran food allergy panels. The nurse practitioner I saw had me take a few blood tests and it all came out normal. I have to have an abdominal ultrasound over spring break. I've also been referred to a GI doc but won't get to see them til mid May because they are a two hour drive from me and I can't afford to miss any more student teaching for doctor's appointments.

To cap it all off I have just been totally wiped this semester. The past two semester my memory has been shot it seems and that kind of worries me. I have fallen behind on my assignments and really have some catching up to do so I can graduate. The problem is I have zero energy. I get home from teaching and immediately take a nap which often turns into four or five hours. I then end up staying up much later because I can't sleep but I'm too exhausted to do anything. I hate this feeling of having no mental or physical energy. I'm terrified of what happens when I graduate because I can't afford to have no health insurance and I still haven't been hired for a teaching job. It's just all taking its toll.

Thanks for letting me vent.

 

[lisah0711]

Jessi, sorry to hear of your troubles. You are in my thoughts and prayers. It is a stressful time in your life, even without health issues, finishing student teaching and looking for a job. Be sure and do as much as you can for yourself to take care of yourself because if you don't no one else will! It is so hard to continue to feel bad without any answers. Has anyone checked your thyroid function? Best wishes for speedy answers and feeling like yourself again soon!

 

[frdeb1999]

I am sorry you are going through this. It has to be tough with everything else you have on your plate right now. But I agree that maybe you should if you already have'nt get your thyroid checked. It can cause alot of problems. I wish I had more I could help you with. Hugs to you!! Hopefully you will get some answers soon.

 

[DisneymoonJess07]

Run, not walk, to get another opinion, and see if you can find someone with more diabetes experience, that would be the best thing. Not every doctor has every kind of experience, and this sounds like it is more than "just" prediabetes. With numbers like that, you should be getting more help. I think even the gastrointestinal problems can be exaserbated from high sugar numbers.

Also, I would suggest writing down everything you put into this post into a formal letter that you can give your next doctor, even before the consultation as a way to explain what's going on.

All my best!!

 

[Tillikumtrainer]

It's been 4 years since my Lung Surgery for my Spontenous Pneumothorax (Collapsed lung) I dont drink or smoke (the good girl as everyone calls me).. They took half my lung because of the huge hole they discovered.. (Im doing research on Premature babies and Pneumothorax cases) I just feel so limited with this, I can swim like there's no tomorrow I dont get winded

-- but being on land well to put it nicely it sux being me--I have to climb five flights to get to my apartment.. I can barely run without getting winded and I just feel wierd.. I cant keep up with my Asthmatic sister.. and im working out and stuff ever since the surgery.. I just feel really down with this whole thing.. First surgery ever and it was a chest tube insertion and emergency surgery.. I havent talked to my family or friends about it because they have their own problems .. so ..

 

[DisneymoonJess07]

You've talked to your pulmonologist about it? The hard thing with part of your lung gone is that there is only limited capacity left...but still!

 

[Eeyores Butterfly]

My thyroid was checked with the initial bloodwork. My mom has hypothyroidism so that was definitely a possibility. My doc wanted to put me on metformin to control my sugars better (still thinking prediabetes) but I declined it because it causes diarrhea and stomach upset and frankly, with my student teaching I can't afford to have any more stomach problems than I do now. I don't exactly have the luxury of being able to run out of the room when I have kids in the classroom.

Our spring break starts Wednesday. I did take the time to see a nurse practitioner one day in my hometown and she ordered the bloodwork for Celiac at my request (negative, but that's not the end of it) as well as checking kidney and liver function. She expressed surprise that had not been done already. Everything was normal. I'm supposed to have an abdominal ultrasound on Thursday but need to reschedule because I was asked today to interview for a job that is several hours away that same day. I also have an appointment with a really good endocrinologist next week while I am on break. He is a family friend (used to babysit his kids) so I am very comfortable with him. He has a good reputation and I'm hoping to get some more answers.

 

[KirstenB]

Jessi, I have no experience with diabetes, so just a for you. I know from your posts you're a kind, thoughtful, educated potential teacher. I think you'd make a great teacher, so I'll pray that you find answers for your health, and that you find a teaching career that lets you reach your potential.

 

[Tinker'n'Fun]

Hi Jessi, I have seen your posts here and there on the boards. I know how hard it is to be sick and undiagnosed. I just want to offer a few suggestions that might help. First, stop blaming yourself. It is what it is. Sometimes life sucks, but hopefully you can try to cope with it a bit better. Also, never stop trying to find the problem. Second and or third opinions are fine. Always trust your instinct. It is YOUR body, listen to it. And lastly, while I know how hard it is (truly I really do) try to take a walk instead of the nap. You will be tired. Put on some music, whatever you like, and take a nice slow walk. I listen to a calming cd first, then a sing-a-long pop hits and I don't even care that everyone is staring at me, and then I end with the calming CD. It helps with the excessive tiredness, boosts your emotions with less depression and quite frankly you should learn to like yourself more. And remember, always post and talk things out. We are hear to listen, reply, and or just offer a cyber shoulder for you to lean on.

Have a great night, day - you deserve it!

 

[mommasita]

to you.

That seems like a lot to go through. I think so many of us can relate so well to you. Try and keep your chin up, and look for ANY little thing that can help you get through each day until you get something concrete, and some help for it.

 

[Regina]

You have a lot on your plate and not knowing what it is you're dealing with makes it even worse.

I hope that they're able to diagnose and treat your illnesses appropriately and that you get some much needed relief.

Best of luck in your job hunt!

 

[Tillikumtrainer]

we all have our little illnesses and problems but at least we are here to support each other

 

[Mousermom]

Jessi,

First let me say that I can completely indentfy with what you are going through. I was diagnosed with Type 2 diabetes about 3 months ago. I have been overweight most of my life and I have an extensive family history of diabetes. Prior to my diagnosis, I had been feeling very "run down" and had no energy. I am 36 years old.

I went to the doctor, and I got bloodwork, urinalysis, EKG...the whole nine yards. I have a question for you:

When you got your bloodwork done, did they mention what your Hemoglobin A1C level was? That test determines what your blood sugar levels are averaged for the previous 3 months. Even though I have a family history of the disease, I was completely clueless as to what it entailed. From what the doctor explained to me, the A1C level has to be a 6 or lower to be considered "normal". Mine was a 7.7. I recently had bloodwork done again and it went down to a 7.3. I also lost 10 pounds!!

I do not have to take medication at the present time. If I continue to lose weight and my A1C level continues to go down, I will not have to EVER take it. That is the motivation that keeps me going. I watch my 86 year old grandmother take insulin shots every day...I don't want to have to go through that.



Believe me, this is rough for me. I am a carb and sweets kinda girl. I struggle every day not to eat things that would be harmful to the progress I have made so far.

Jessi, You are still young enough to make the changes needed so this will not become a life long struggle. I feel for you and identify with you. PM me if you need to vent.

Hugs to you,

Mary Beth

 

[Mackey Mouse]

I agree with another poster here, get a second opinion. I would do some research and see what hospitals and doctors are more up on the newest and latest in diabetes research... Good luck to you, I know you feel overwhelmed but you have to be your own advocate here, and I think you know that something is going on that this doctor does not quite get..

Hugs.

 

[Eeyores Butterfly]

I talked ot the docto'rs office this afternoon and I'm kind of freaking out a little bit. I had some tests done for some stomach problems I've been having. Not all of the tests are in, but one that came back showed higher than normal serotonin levels. I could not get the nurse to give me any kind of information about what this means. I have to do another kind of test to confirm the results.

I looked it up since she wouldn't tell me anything and now I'm wishing I had not. Apparently it tests for something known as carcinoid syndrome which is caused by a hormone secreting tumor. The first site made it sound like no big deal and never even mentioned cancer. But then on MayoClinic's site it called it cancer and said in many people by the time you show symptoms there's not much that can be done.

Needless to say I'm really freaked out. It does sound like there are a lot of common substances that can cause false highs on the tests and those were not controlled for. I'm still really nervous and wish that the nurse had given me some kind of information so I wouldn't have felt the need to look it up.

 

[lisah0711]

to you, Jessi. I would call the doctor's office first thing tomorrow and ask to speak with the doctor and get the info from him and get your questions answered. You don't want this hanging over your head all week-end.

I personally don't worry about anything when the nurse speaks to me because I know with my doctor it is serious he is the one to do the talking. Elevated can mean a lot of things, in other words, it might be elevated but only by a small percentage.

I know that it is hard and you have lots going on in your life but try to stay positive!

 

[Eeyores Butterfly]

Thanks. I got off the phone with my mom (a microbiologist at a hospital) and I feel a lot better. Other than the occasional diarrhea, I don't have any of the other "classic" symptoms- I didn't even know they were testing that!

At this point I'm confused and a little irritated with the office. I had my physical last Monday. No blood tests were ordered. The next day is when I saw the GI doc and had to do a blood and stool test. My GP called me on Monday of this week sayng the stool test and the Inflammatory Bowel Disease tests were all negative. (IBD were the blood tests done).

Then I get the call today. It took me 10 minutes to get her to tell me that my serotonin level was slightly elevated, I need to do a 24 hour urine test, and the IBD test hasn't come back yet. Do you see why I am confused? One office (not the one that ordered it) called me and told me everything was back and fine. The other office calls me and tells me one test is abnormal and the others aren't even back yet. So how did my GP have the results of the other tests? I'm starting to wonder if there was some kind of lab error or if they are giving me somebody else's results.

I am calling them tomorrow to see if I can sort things out. I am also going to try to talk to somebody who can give me a straight answer (something I was unable to get out of this woman. She wouldn't shut up but she never gave me any real information. That takes talent.) My mom told me that she has heard that the staff at that one office is really bad. So right now I'm not scared so much as I am irritated because there is something really screwy going on here.

 

[jennz]

How frustrating for you!! I'm glad you're calling tomorrow to get some answers. These are tests on YOUR body that YOU paid for - they owe you an explanation and it makes me angry that you have to go to such lengths to get one.

Did your thyroid test come back in the normal range?

 

[lisah0711]

Well, that sounds better but ITA that it wasn't handled well. The people who work in doctor's offices are people, too, and they make mistakes just like everyone else does but you're the one stuck on the roller coaster.

I always get copies of my tests so I can actually read them myself. Lots of times I have no idea what they say, but I can tell that it was me that was tested, and read how the result is compared to normal, if it is a blood test. It's helpful to have your own copies if you get another opinion, too.

As you know, no one knows your body as well as you do and you have to be your own advocate. I will send some to you that they figure out what is going on and let you get on with your life!

 

[jennz]

Well, that sounds better but ITA that it wasn't handled well. The people who work in doctor's offices are people, too, and they make mistakes just like everyone else does but you're the one stuck on the roller coaster.

Just had to add that is so true. And to them, they see it every day and are used to it, but to us it's all new and unknown!