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Nurse72
Nurse72, Nurse (RN)
Category: Health
Satisfied Customers: 365
Experience:  RN 20 years in health care. Available to answer your health questions
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I am looking for some guidance in navigating medical systems.

Customer Question

I am looking for some guidance in navigating medical systems. My husband is 31 and was diagnosed with ulcerative colitis about 7 years ago. He was in remission until about a year ago, and he started taking Apriso, and his intestinal symptoms have lessened. In the last month or so, he has been feeling some chronic joint pain and losing some body mass, though his diet remains the same. He recently had a full blood workup and the only abnormality was a low free testosterone result; otherwise, everything was normal. However, he continues to have this chronic joint pain and feel as though he is losing more mass. We are wondering what the next steps should be, or what questions we should be asking his primary care or GI doctor to figure out further what may be causing the pain. Any suggestions are appreciated.
Submitted: 4 years ago.
Category: Health
Expert:  Nurse72 replied 4 years ago.

Nurse72 :

Has he had any blood tests to screen for autoimmune diseases?

Customer :

I know he was tested for arthritis inflammation, but his ESR and CRP levels were normal

Customer :

I do not know past that, he has about 10 pages of blood results, what types of tests should I be checking for?

Nurse72 :

He should have an ANA (anti nuclear antigen) blood test to screen for autoimmune diseases.

Customer :

Okay, is that the test for lupus?

Nurse72 :

Yes

Customer :

I will have to check his results for that.

Customer :

Is there anything else we should be asking about when he sees his dr this week?

Nurse72 :

Even if he's had it in the past I would request a retest now that he has these symptoms

Customer :

His blood work was just done about 3 weeks ago, while he was having these symptoms.

Nurse72 :

ok, just check to see if this test was done at all

Nurse72 :

Make sure the doctor is aware of all the symptoms he is having and not focusing on just one symptom separately. They need to take a step back and look at all of the symptoms together and move on to another possible diagnosis

Nurse72 :

Many doctors tend to treat symptoms and forget about the "whole picture"

Customer :

Meaning make sure they don't just assume it is related to colitis?

Nurse72 :

exactly

Nurse72 :

Ask questions to provoke thought in the doctors such as " What else could be causing all of these symptoms"?

Nurse72 :

or "Is their any other possible diagnosis we should be looking for here"?

Customer :

Okay, because once the bloodwork came back with no abnormalities except the low free testosterone, the primary care doctor sort of brushed him off and said there's nothing really going on if it's not arthritis, since his inflammation levels were normal.

Nurse72 :

"What other tests do you recommend for these symptoms"?

Customer :

Okay. Do you happen to know if colitis can lead to losing body mass? The thing is, he's not really losing weight, but his clothes are all fitting too big now.

Nurse72 :

You have to be persistant and be in charge of your own health care. Don't take "that's all" for an answer

Nurse72 :

That can be due to the low testosterone levels causing loss of muscle tone and increase of fat

Nurse72 :

This can also cause a change in bone density

Customer :

He did have a dexascan last year and was told he has osteopaenia, but he was just barely into the higher end of where they diagnose you with that

Nurse72 :

It may be helpful to get a copy of your records and get a second opinion with an internal medicine doctor instead of a family doctor

Customer :

What is the difference?

Nurse72 :

Internal medicine is better trained in specialized areas

Customer :

Okay, that makes sense. He was definitely not satisfied with, "your blood work is fine so you're fine." So we wanted to see what else we should specifically ask.

Nurse72 :

I wouldn't take that for an answer either

Customer :

So we should consider sending him to an internal medicine doctor, and sending him with the test results, talk about ANA testing, and go from there?

Nurse72 :

Yes, that's the best way to continue at this point

Customer :

Okay, thank you, that is a big help. It gets so tricky trying to navigate when you aren't a medical person yourself!

Nurse72 :

You're welcome, Hope he feels better soon

Customer :

Thank you!