Getting ready to see my original PCP for extreme weight loss issue (update 5/20)

I have had the same PCP for around 20 years or close to it.  Haven't seen much of him the past 3-4 years, because most of my issues have been related to my PC, it's treatments, and all the complications.

The doctor recently changed practices, so tomorrow, I am going by to fill out all the paperwork to get my records transferred, and try to get an immediate, urgent appointment.

My oncologist, by default, has pretty well been my PCP the past 3 years, but I know he's really he's not a complete PCP or GP.  I have an assigned VA PCP, but so far, I haven't seen much of him, and I am kind of frustrated by their slowness in doing things at time.

Since January 1st, I have now lost 22.2% of my starting weight.  They consider 5% alarming, anything around 10% disturbing, etc.  This has happened on is own, and I feel I am in a vicious circle.  I don't exercise (that little bit I do at PT once a week is laughable from an exercise perspective).  I don't take diet pills, I don't have diabetes, I don't stick y fingers down my throat).

I simply have zero appetite at all times, and I mean that literally.  Of course, if you are not eating, you are going to lose weight.  I have to still make a conscious effort to even eat at all any more.  Anything more than a few bites, and I feel stuffed to the gill, and that translates to stomach cramps which trigger my back aches to even a higher level.  Generally, within 15-30 minutes of eating (anything, solid or liquid), I am so cramped up, and then most times, I have to go #2, and half the time, it's liquid (not trying to be gross).

I am hoping to get a full physical from my original doctor.  With all the blood work and special tests the past six months, something must be getting missed.  The only medical person thus far disturbed by this is my fairly new BCPS assigned nurse.  She prompted me to take this step.

At first my wife wasn't overly concerned, she thought it would pass, but it hasn't since January.  Recently, I had 2 pretty good meals in the same day (rare for me currently), yet I still lost 3 pounds by the next morning.  It doesn't seem like its even possible.  She told me today, she's starting  to pick up that "sweet" smell that often accompanies patients with either anorexia or wasting disease, or both.

I am not scared or worried, but I am getting deeply concerned.  At first, it didn't bother me that much, I had plenty of fluff to spare, and it was kind of cool fitting into clothes sizes that I haven't seen in years.  As of this morning, I am now less than 7 pounds of what I weighed on my wedding day in 1974.

Some things that has hit my wife's brain, is some form of thyroid trouble, in one variation - people gain weight even though they cut back and exercise, and in the other, you keep losing weight, despite eating.  That should be easy enough to check out.

She took my blood sugar this morning, which was 95, which sits right in the middle of the perfect range.  I do not exhibit any of the other obvious diabetes symptoms.

Despite the rapid weight loss, it's had no effect on my energy level or strength, as its already been great diminished the past few years due to the chronic pain/fatigue.  I certainly don't feel depressed or anything like that.

Was reading about thyroid cancer, fairly rare, and one of the main causes, is with people that had heavy doses of neck/throat radiation in the past - such as I.  Wondering if that 70 gys. I got slammed with in 2000 could be coming back to haunt me?

Hopefully, my old doctor will be able to figure out something, or get me to the right kind of specialist before this turns into something worse.  Whatever is going on, is certainly mocking "wasting" disease.  The complete loss of appetite, rapid weight loss, and very noticeable muscle wasting going on in my arms/legs, and in recent weeks, having a bit of trouble swallowing when I do eat, feels like my throat has narrowed, and I have to keep drinking water with almost every bite.

Don't know how long it will take to see the doctor, but I want it ASAP, and will let everyone know what he thinks, hopefully this situation can be slowed way down, and hopefully reversed.

David

(this is meant to be an update only, at this point, I need sound medical advice from the doctor and a course of action to follow)

Post Edited (Purgatory) : 5/20/2014 6:21:55 PM (GMT-6)

Hi David,

I think the PCP is a great idea, along the same lines would be to get a great internal medicine specialist. The internal medicine guys are the holistic brains of the medical profession, they are used to complex cases and see the entire patient head to foot.

You are right, this is urgent. You need help.

Perhaps in the meantime you need to eat a lot of little meals. I went through a period in my early twenties where I became 38kg (83pounds) from not feeling hungry and not eating (the stress from breaking up with my first love!) and the advice I was given was to eat a lot of small meals. I know the trivial problems of a 23 year old have little to do with the very complex medical situation you are in but I thought that the advice I received about lots of little meals could help.


Regards,
An

Post Edited (An38) : 5/19/2014 7:52:37 AM (GMT-6)

Wishing you well!

I have near zero appetite either went from 180 to 140 at time of surgery. I searched and one consistent weight building strategy is pdnj's basically whenever you can fit one down. I just went over the 150 mark last Friday. Its taken me 4 months but it works.

Hopefully its not something beyond a lack of appetite as mine is.

Here's hoping your PCP has some insight and helpful suggestions.

Andrew

David,

Thanks for the update. Take care and be well.

Tim

thanks one and all, appreciate the kind thoughts. both my wife and I are getting very concerned.

to GOT above, what is "PDNJ"? didn't understand
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Went to doctor's office, filled out all new paperwork and insurance stuff.

Told them that while I don't need the ER, my situation should be viewed as Urgent, and time might be of the essence. They understood. Said it would take up to 48 hours to process everything in their systems, and they should be able to fit me in quickly.

It helped that my wife used to be this doctor's only nurse for about 4 years, some years back. And this is the doctor that saw me through my 3 previous non-PC cancer bouts.

As a further update, this is typical, especially the past 3 days. I eat dinner each night, child's portion let's say. 15 to 30 minutes later, back aches start up intensely (first sign), severe stomach cramps roll in (Pain level 8-9), then if I am lucky, leave a major "deposit" in the throne. Food is not even staying in my long enough to digest properly, so probably not staying in long enough to get nutrients out of it. Once I am emptied, back aches and cramps go away, back to where I started from.

Plus, throat increasingly feels like its narrowing when I try to swallow or drink anything. I don't like that part, kind of scary.

I will give them one day to call me back, if not, will be all over the phone.

With the pattern I describe above, one can see why I have no incentive to eat. First, I am never hungry, not even a little bit, and in the back of my mind, I know what I said above will happen - so makes me avoid eating even more, but realizing I need the food for my body, couple that with a mouth full of crumbling teeth making it hard to eat anything that really requires chewing - add all that up, and you can see what a vicious circle this has become.

Plus its hard to force your self to eat if you honestly don't sense some kind of food desire or appetite, eating itself, is a very sensory guided event - the appearance, texture, smell/aroma, taste of course, and more importantly - the very desire to want to eat.

David

David:

I hate to hear this news gentle (((hugs))) to you. You're really having serious issues with this and if you've not heard from the PCP tomorrow, please promise me you'll BE ALL OVER THEM. This is a serious issues and someone needs to figure it out quickly.

I would suggest that you request another stool sample be done. Specifically for Giardia this is a parasite that mostly animals get, but humans can get it. How do I know this, you ask? Because I had a rip roaring case of it back in 1991. Your symptoms sound A LOT like mine were then.

I dropped down to 106lbs in less than 3 weeks losing 24 pounds during that time. I was NEVER hungry, and anything I ate or drank, I'd dump right out. I was testing positive for being malnourished as nothing was staying in my bowel long enough to absorb them.

I went to the Doctors and told them about my symptoms, and they blew me off. Said it was stress as my boss had recently committed suicide. Well 2 weeks later I go back and now I'm another 26 pounds lighter and
Doctor said lets get the stool sample. I was so bad, I was able to provide the sample there in the clinic. I left headed for home. They called my hubby and informed him I had Giardia and I needed medication ASAP. Took the medication as prescribed but needed a 2nd round of medication. He siad he'd never seen someone as bad as I had it.

So, I think it's worth testing you. We get it by eating fresh fruits or veggies that aren't washed enough. The Thyroid issue you mentioned is Hyperthyroidism and it dose make you lose no matter what. Both our cats had this disease. The passed away back in 2001, our current cat, who is big and used to weigh almost 18 pounds 4 fours ago is down to 8 pounds. He's been on thyroid medication for about 4 years and now started steroids, he's finally gained 6 ounces. Not much but we're thrilled, I know he's on last legs.

I hope you get an appointment tomorrow and that your issue is something simple like Giardia or Hyperthyroidism and some medication will fix you right up. I'll be praying it's not dangerous to you or bad. You deserve a total break You have been through so so much you don't need another "issue" to cope with. In my book David you seem to be a Modern day "Job" from the Bible. I don't have answers as to why some of us have to have MORE CHALLENGES THAN OTHERS IN LIFE.

David you are an inspiration to a lot of people. You're my pain buddy and we stick together thru thick and I'm here if you need me anytime. You have my contact information to reach me, so you hang in there David and I'll be praying for you daily.

Hugs,
Barbara

I know what it's like to have no appetite and not find anything very appealing. You might set an alarm as people have said -- and just slug down 4 oz of one of the high-value meal replacement drinks every hour or so - Ensure comes to mind. They aren't great, but easy enough to slug, wash out mouth with water, and continue on. And yes, your bowels can get very mixed up. I find that if I do something regularly for 4-5 days the cramping & dumping can be alleviated. Perhaps have a cracker or something else solid but neutral with the protein drink.

So very sorry your going through all this added stuff, you have my prayers...
I think your onto something with the thyroid, my daughter has hypo thyroid and has gained weight, I'm borderline and do not have an appetite and sometimes force myself to eat as well...once for lunch all I ate was a piece of toast with honey on it, I do drink plenty of water...I wonder if water intake is making you have a low appetite...could be thyroid though...either hyper of hypo...
Hope you find a clue soon and so very sorry your not on the CP Forum anymore...missed you there...

David,
I can only offer hopeful words that your PCP can get the bowel thing under control first and that may help the weight and nutritional issues. Your friends provided some good insight. You are an inspiration and deserve at least one break!
Prayers for you and Peg,
Pat

Barb - thank you so much, I wrote down that ailment you mentioned, to have with me when I see the doctor on Thursday, might be worth being tested for. I hope you are getting some kind of break yourself. The good book says it rains on the just and unjust alike, so I never take these trials in a personal way, its just what life has handed out. However, one would think they would catch a break at some point. I know you haven't either, as your woes keep getting piled up constantly, from one thing to the other. I would have never dreamed that the past almost 6 years of my life would be that of constant medical calamities, one after the next. I was 56 when this started, almost 62 now, and there's been no let up thus far. Will continue to keep my pain buddy in my prayers.

Lynwood, at one point, I could chug the Ensure stuff without issues, but now, even those trigger an immediate response of cramping and dumping, nothing stays in long enough to really get digested

samster, thanks, hopefully my doctor will be checking me thoroughly for any possibility

chart, if I thought I was "safe" to post there, I would, I miss a lot of folks there. I drink enough to stay hydrated, but not guzzling water all day.

pat, thanks for your prayers and care

David- I am so glad the PCP is going to see you that quickly. Here's hoping that he can help you.
Hubby had his 3rd cystoscopy surgery to open his bladder neck again, today. Went well, except the catheter clogged up with blood clots just before we were to be discharged. Had to change out the catheter. Fingers crossed it doesn't clog again.
Keep us updated.
Prayers continue.

Hi David! I had no idea you were suffering with this additional issue (see what happens when you don't post on the CP forum? Lol). Seriously though, I hate hearing that you're feeling so miserable. Anyway, I just noticed this so I thought I'd throw in my 2 cents.

A few things came to mind as I was reading about your symptoms. They may be totally off the mark - or they may have already been mentioned here (I haven't read all of the comments). But hey, you never know, so I'll tell you anyway. The first is pancreatitis (or something else related to the pancreas). Your symptoms are very similar to what Robert had during his bouts with it. There are differences of course because his was related to alcohol and yours wouldn't be, but the basic symptoms are the same. Several times he came down with it immediately after a night(s) of drinking - these were different from what you describe - they were much more 'violent' and each time he thought he was dying (actually the pain was so bad, he WISHED he'd die just to have the pain stop!). But he would have other episodes where he hadn't been drinking prior, and it was during those that he had these symptoms: zero desire to eat, zero appetite - when he did try to eat something, he would immediately double over with severe cramping, which spread to his back - he would have a bm very soon after and within 15-20 minutes, the pain/cramping would subside. Oddly, the only food that wouldn't cause that reaction was yogurt (small spoonfuls of it). I also know that when there is something wrong with the pancreas, it causes malabsorption of food, which can lead to rapid weight loss.

A couple of other things I thought of are a bile duct issue and an ulcer (specifically one located on the back wall of the stomach). I had an uncle who had that exact type of ulcer and I vaguely remember his complaints resembling yours. So I looked it up and sure enough, they are similar. There was also something else I thought of - and as I was writing, I totally forgot what it was! My brain has been 'mis-firing' quite a bit since Robert's death - so if I remember what it was, I'll pop on later and let you know.

Ok, just wanted to toss you some possibilities. I sure hope your PCP comes up with something and gets you to feeling better really soon! (Try to) have a peaceful day.