Crohn's Disease Forum » Support Forum » How to better approach the topic of asking for blood results


01-27-2019, 05:32 PM   #1
Kas8173
 
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How to better approach the topic of asking for blood results

Before I begin I'll give some relevant information about my background.

I am not a doctor but have always been interested in medicine and biology. Five years ago I worked as a data analyst for three years where I published two papers in peer reviewed scientific journals on the topic of how chemotherapy affects neutrophil counts in cancer patients. I don't mean to be immodest or arrogant but for the purpose of the rest of the post it's important to know that I do have at least a basic understanding of medicine.

Because of my background, and because I have an inquisitive personality, my first response to being diagnosed with Crohn's disease was to find out everything I possibly can about the disease and how it affects my body. My research methods include books, the internet and asking medical professionals for their advice. A year later I am still researching and finding out new things. I would definitely class my research as a coping mechanism. Knowing more about my disease makes me feel more in control of something that can easily take away my health at any time.

Part of me wanting to know everything about my disease involves me asking doctors or nurses for my blood results. I am interested in my exact haemoglobin level so that I know whether or not to take iron supplements to increase it. I am interested in how my azathioprine affects my neutrophil counts. I am interested in whether I am a thiopurine hypermethylator based on my metabolite levels. I am interested in the trough levels of my infliximab and whether or not I am forming antibodies towards it. In short I am interested in the result of every blood test that I have.

I have a disease which is going to be with me for the rest of my life. Knowing everything I can about it will benefit me for the rest of my life.

The reaction that I get when I ask doctors or nurses for my results is one of two types. Some will be very happy to see a patient taking such an interest in their own condition and will happily discuss anything with me. I've been told that a lot of patients don't manage their Crohn's very well because they do things like not take their medications and not follow their doctors advice, so I've been told it's refreshing to see a patient who wants to take control, know everything and do everything correctly.

However, unfortunately I do commonly get the type of doctors or nurses who really loathe to tell me my results. The kind of answers I've had are:
  • Why would you want to know these results?
  • Are you sure you will understand this? There's no point in me giving you these results if you won't understand them.
  • Your results are not for you, they're for the doctor to understand.
  • Just stop worrying and let the doctors do their jobs

It has gotten to the point where I can tell that a certain few medical professionals I see on a regular basis don't like me. They will chat with other patients and ask them about their day, but not with me, they give me the cold treatment simply because I've asked for my results a few times. Whilst they are not unprofessional I can tell from their body language and tone that they are thinking something along the lines of "It's him again, the guy who always asks for his results". I don't think I've been confrontational or rude in how I've asked and if I have been then it wasn't intentional. I don't know how to repair my relationship with these people.

On the other hand, there are some medical professionals who I have a very good relationship with, they get the reason why I want my results straight away, and possibly they like me more than the average patient, because they find it interesting to have such technical discussions with a patient who understands their disease (again not intending to be immodest).

I'm aware that me asking for my results may come across like I don't trust the medical professionals. I'm also aware that they may feel threatened that I'm going to use the results to challenge their diagnosis or advice. They may also be uncomfortable with giving me the results if they are inexperienced and don't fully understand the results themselves as they may feel they aren't qualified to answer any follow up questions I have.

How can I better handle the conversation so that I can allay any of the above concerns that they may have? It's not because I don't trust them, it's not because I want to challenge them, it's just because I want to gain a deeper understanding of my disease and the way my body reacts to things. I also want to explain that I will understand the results due to my background, and if I don't, then I'll make sure I do enough research until I do.

In my country the GDPR law says that I have the right to ask for any results I want and there are no restrictions on giving them to me. But preferably I don't want to bring up "my rights" because I don't want to sound antagonistic. I want to hopefully change their mind to help convince them that it's in my best interest to know my results, because that will lead to greater control over my disease and hopefully better health. I want them to hopefully reach the understanding that giving results to patients (who are interested) is something that should be embraced and encouraged.

Given that a lot of users of this forum are or have been very unwell, and the reason you have come to this forum is because you are seeking more information about your disease, I hope most of you will agree with the sentient of the previous sentence.

Last edited by Kas8173; 01-27-2019 at 06:01 PM.
01-28-2019, 01:54 PM   #2
Scipio
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I always get hard copies of all my test and procedure results for many of the same reasons as you.

Just tell them: "I am listening to and following the doctor's advice and interpretation of the results, but I am also keeping my own comprehensive record of my healthcare in my files at home, and so therefore please print out a copy of my test results for me. Thank you."

And if that doesn't work, then it's time to remind them of the law.
01-29-2019, 06:14 PM   #3
aweitzm1
 
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If the test results are from a third part lab you can contact the lab directly for the results. All my doctors post my results online in their portal. I have never encountered a doctor not giving copies of the results.
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01-29-2019, 07:56 PM   #4
Lady Organic
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I understand you and i am a similar same type of patient I feel sorry for you you came across condescending remarks about your questions and interest with your condition. I never had such bad experience with staff. There are usually impressed and surprised with my proactivity.
The easiest and most interesting way I found is to get my results before I have my appointment with the doctor or nurse. That way I know exactly what to discuss during my apponitment instead of being caught by ''surprise'' results the doctor gives me, with not much time to think and react... As mentionned above, we have the right to get all the results we want. here in canada, in each hospital, there is a Archive department where you can go and ask copies of your results without any question to a secretary. Im sure you can get the same service in the UK. Having your result on hands before your appointment and not having to depend on the staff to give them to you puts you in a leader position and probably you will get more respect you want that way.
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03-25-2019, 01:52 PM   #5
Delta_hippo
 
Join Date: Jan 2019

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Yeah it's frustrating. I've been told things like b12 are "in normal range" then you eventually get the number and its just slightly above the lowest cut off.

One I've tried is asking for a print out "for my records" or "so I can track progress". It's a 2 second job, most if you ask directly will say yes as can't think of a reason on the spot not to.

The other thing is, don't worry if they aren't making small talk with you, you've got friends for that.

Good luck.
03-25-2019, 02:04 PM   #6
Mountaineer01
 
Join Date: Oct 2018
Location: Baltimore, Maryland

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It's your health and your right to see a copy of the results. So what if they don't like it? At the end of the day, you want to make sure you are doing everything in your power to keep yourself as healthy as you can.


I am an engineer, so naturally I am very analytical. I always ask for copies of my lab results, CT and MRE images, and any other testing I have to do.
04-11-2019, 06:23 PM   #7
AmyIsHere
 
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I also ask for any test or bloodwork results! I keep a spreadsheet of all my bloodwork. Any bloodwork I've had anywhere goes into this spreadsheet, and has, for the past 5 years.

Most of the doctors and nurses I've encountered have been happy that I am keeping an eye on things, as well. And luckily, with patient portals nowadays, I rarely have to ask anyone -- I just have what I need. However, there have been times where I sensed some hesitation to hand over a copy of everything. Or maybe just confusion as to why I would want that. With those few people, I've found it's easier to ask the office staff or an assistant. Generally, everyone has handed things over without issue.

I'm sorry you've been met with some push back. I wouldn't worry too much about anyone thinking you are being difficult, though. After all, it's your health, and you are the best to monitor it. I do think some doctors probably get annoyed at the people that say, "I saw on the internet..." If I am bringing something up as a question, I always mention that I read it in a peer-reviewed medical journal. I think once your doctors know that you understand things, they will appreciate what you do and the collaboration that can occur when it comes to your health! Sometimes it just takes awhile. And sometimes you have to find the right fit.
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