I'm losing weight unintentionally and am worried

[Anonymous]

OP, did you ever have your gallbladder out? I have something called Bile Dumping Disorder that affects a small number of post gallbladder removal patients and I have the runs every time I eat for years now. Just a thought, I haven’t read all your posts, sorry.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP are your loose stools greasy?
Do you have any recurrent sinus or congestion issues?
Is there any chance you have adult onset cystic fibrosis?

Is that even a thing? CF is a genetic thing. In rare cases you wont have noticeable symptoms until the teen years and get a late diagnosis but I don’t think you can have an “adult onset” of a genetic mutation.

Yes it is a thing. A close friend of DH had mysterious symptoms for years and was finally diagnosed in his 40s.

It's DIAGNOSED in adulthood because person had mild symptoms. It's called afult onset but it is indeed genetic.
https://pmc.ncbi.nlm.nih.gov/articles/PMC12033639/

https://www.cff.org/community-posts/2020-11/late-cf-diagnosis-explained-everything

One of my colleagues was diagnosed at 50!

[Anonymous]

Anonymous wrote:

Anonymous wrote:OP- I lost 35-40 pounds shortly. I maybe needed to lose TEN. I got down to 105. I wasn’t adsorbing ANY vitamins or nutrients.


I’m on monthly vitamin infusions, at the hematology department in our local, massive hospital system. I do not have cancer. I have an absorption problem. I’m eating like my teen boys, they have well rounded diets. I’m back to 120 which is a good weight for my height (5’5”) and build (small bones). But if I don’t keep up I drop weight quickly.

Thank you! This give me hope.

Did your GI doc refer you to hematology and they diagnosed you? What kind of tests did you get to confirm diagnosis?

I’ve seen a GI, neurologist, hematologist, had CT scans, MRI, tons of blood work, had an appendectomy, colonoscopy, endoscopy, monthly infusions, plus daily vitamin protocols, and on and on. The bloodwork showed my vitamin deficiencies and the other tests ruled out anything additional. I also have thyroid disease (and have since I was 17) anemia (again have had this off and on for decades) RA, immunocompromised gut, and on and on again.

[Anonymous]

So how is your immunocompromised gut being managed and treated? That's why you have the runs and maybe why you lose weight.

[Anonymous]

Anonymous wrote:So how is your immunocompromised gut being managed and treated? That's why you have the runs and maybe why you lose weight.

+1. What did the biopsies from the colonoscopy say about what the diagnosis is?

Sounds like classic IBD.

[Anonymous]

Anonymous wrote:So how is your immunocompromised gut being managed and treated? That's why you have the runs and maybe why you lose weight.

I am the PP with the immunocompromised gut. I am not the OP and don’t have bowel issues. I have malabsorption of vitamins. As I previously said, I’m on monthly infusions and take daily vitamins and medications, with regular bloodwork.

[Anonymous]

Anonymous wrote:

Anonymous wrote:So how is your immunocompromised gut being managed and treated? That's why you have the runs and maybe why you lose weight.

+1. What did the biopsies from the colonoscopy say about what the diagnosis is?

Sounds like classic IBD.

Colonoscopy was clear. Again, I am a PP, not the OP. No bowel issues.

[Anonymous]

OP, any update?? When I get bloodwork for thyroid etc done , it’s back within 24 hours usually. Hope you got some good news

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP- I lost 35-40 pounds shortly. I maybe needed to lose TEN. I got down to 105. I wasn’t adsorbing ANY vitamins or nutrients.


I’m on monthly vitamin infusions, at the hematology department in our local, massive hospital system. I do not have cancer. I have an absorption problem. I’m eating like my teen boys, they have well rounded diets. I’m back to 120 which is a good weight for my height (5’5”) and build (small bones). But if I don’t keep up I drop weight quickly.

Thank you! This give me hope.

Did your GI doc refer you to hematology and they diagnosed you? What kind of tests did you get to confirm diagnosis?

I’ve seen a GI, neurologist, hematologist, had CT scans, MRI, tons of blood work, had an appendectomy, colonoscopy, endoscopy, monthly infusions, plus daily vitamin protocols, and on and on. The bloodwork showed my vitamin deficiencies and the other tests ruled out anything additional. I also have thyroid disease (and have since I was 17) anemia (again have had this off and on for decades) RA, immunocompromised gut, and on and on again.

Thyroid disease? Graves? That causes very fast weight loss.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP- I lost 35-40 pounds shortly. I maybe needed to lose TEN. I got down to 105. I wasn’t adsorbing ANY vitamins or nutrients.


I’m on monthly vitamin infusions, at the hematology department in our local, massive hospital system. I do not have cancer. I have an absorption problem. I’m eating like my teen boys, they have well rounded diets. I’m back to 120 which is a good weight for my height (5’5”) and build (small bones). But if I don’t keep up I drop weight quickly.

Thank you! This give me hope.

Did your GI doc refer you to hematology and they diagnosed you? What kind of tests did you get to confirm diagnosis?

I’ve seen a GI, neurologist, hematologist, had CT scans, MRI, tons of blood work, had an appendectomy, colonoscopy, endoscopy, monthly infusions, plus daily vitamin protocols, and on and on. The bloodwork showed my vitamin deficiencies and the other tests ruled out anything additional. I also have thyroid disease (and have since I was 17) anemia (again have had this off and on for decades) RA, immunocompromised gut, and on and on again.

Thyroid disease? Graves? That causes very fast weight loss.

That PP keeps posting about her own health issues but she is not the OP.

[Anonymous]

Op, did you get your latest results?

[Anonymous]

Anonymous wrote:Op, did you get your latest results?

OP here. Yes, I got my lab results. TSH normal. C4 high. Vit E on lower end of normal.

[Anonymous]

OP again - to the PP who is also being seen by cyst clinic, could you please share which radiologist reads the reports for cyst clinic - Is it radiologist A. Za or someone else? I want to get a second opinion from someone who reads the cyst clinic reports or repeat the scan.

Do you get your scans at the Levi Watkins outpatient center on Caroline street or the Sheikh Zayed tower in the hospital at 1800 Orleans street? I have an MRCP scheduled at the Caroline street location but can change it if it is the wrong one for the cyst clinic.

I had the first MRI abdomen/pelvis (had to split MRCP and this since they didn't have a 90 min slot) done at a different location and they screwed up my IV, did not stop when stuff was leaking out nor did they tell me to stay still when I was talking and squeezing the pump. Everything that had to go wrong went wrong - starting with a 1.5 hour delay, them sticking me twice since saline would not flush, and then pulling IV out on second site because they tightened it too much, then the leak during the exam, me panicking and squeezing the emergency pump and them not stopping to redo. If I was given instructions before the scan that a leak is fine I would have stayed still and not panicked. Never happened to me before.

I posted in a radiology forum and the radiologists say the scans will be sub optimal since I moved in the most important arterial phase which detects tiny lesions.

The center refuses to accept their error, and to top it, a resident read my report and said the IPMN cyst is not there. That's how I knew the whole scan was a bust. How does an IPMN that was in the side branch in tail possibly communicating to main duct disappear suddenly?

[Anonymous]

OP - do you have health anxiety?

[Anonymous]

Our bodies can clear some cancers. It’s a thing. It’s a big reason we don’t scan young people for cancer regularly.

I hope you are doing OK, OP. What you are going through sounds very stressful.