AIBU or should I bring up CFS to my GP?

[strawberrieshortcake]

I have suffered with chronic fatigue for more than two years, I have periods where I can barely move around my house without becoming completely exhausted. My fatigue gets worse with exercise, carrying a 15kg suitcase requires hours of rest afterwards.
I have had around 6 blood tests over these periods and have always had low neutrophils which my GP believe is natural for me and have had low iron and vitamin D which has been corrected with tablets.

I am still chronically exhausted even after this and my GP’s next course of action is to refer me to a cardiologist because I mentioned occasional heart palpitations. I understand the GP wants to rule out a genuine heart problem but at my age and family history I think my heart isn’t the issue. Also she admitted herself that heart issues rarely cause chronic fatigue.

I think that from researching my symptoms CFS is a possible diagnosis- I understand I am not a doctor but she has not even mentioned it as a possible reason and I feel like she keeps fobbing me off with blood tests. She’s sent me for three in less than three months.

Should I mention CFS to her? Do you think she would consider it? Should I ask for a different GP? Btw I cannot afford private healthcare in any capacity so this is not an option.

Have you ever been bitten by a tick? Lyme disease mimics the symptoms of CFS.

www.massmecfs.org/more-resources-for-differential-diagnosis/205-symptoms-common-to-lyme-disease-and-cfids

Hope things improve for you.

@Aurea I cannot recall anything but mosquito bites in the last few years and I live in a suburban area. It could be a y though so I will ask my GP for a test.

@LudoFriend I have heard how debilitating an illness CFS and I truly do not wish for the diagnosis at all. I am worried now because it seems there is not much else I can be tested for. I really hope your symptoms improve soon.

From experience, heart palpitations can one hundred percent cause extreme fatigue, and if you have got an arrhythmia it is near impossible to catch on an ecg unless you are symptomatic at the time! Well worth going cardiologist to rule it out first! It can be hard to catch but I know when mine acts up the exhaustion is like nothing else, it’s generally well controlled with medication but if I do have a flare up I’m fit for nothing! It may well be nothing cardiac, but if you are having palpitations it’s well worth the visit! I hope you get to the bottom of it!

Thank you, I actually have given up hope because it's easier. If it happens, awesome, but that way I'm not disappointed.

Just so it's clear, I wasn't thinking you wanted it. I'm sure you just want a diagnosis or reason for how you feel. For whatever reason simply having a name to call your symptoms helps hugely, or did for me. I hope your health improves soon, and that they figure out what is going on. Keep pushing and reminding them about the fatigue, but do accept whatever tests they want to throw at you. You may have CFS, but it doesn't mean that everything else is healthy.

@Sheldonoscopy @strawberrieshortcake
I also have neutropenia. I would be seeing haematology - neutropenia makes me tired, and mine were low for 8 years until a locum GP saw me with night sweats and sent me off
Turns out I have autoimmune neutropenia so I produce enough neutrophils but kill them off
My lowest was 0.2 but I am now on GCSF

My gp has said she’s handed my results over to another doctor who specialises in haematology so I’ll have to see what she comes back with.

It would be worth you viewing the blood results yourself and even posting here. A lot of people get overlooked because their blood tests are (just) in range but sometimes they are near the edge. For thyroid tests, often just tsh is tested (and is in range) but when t4 and t3 is tested (particularly t3) it shows a thyroid problem. This is just one example that was actually my cause of exhaustion. I have a friend who was b12 deficiency but it took years to diagnose as she was 'just' in range.

@Upordown

I saw my blood tests on the doctors computer screen but not up close. I saw quite a few in the low range (the slider was near the front of the acceptable range bar) but there were a few extremely red which were the neutrophils, vitamin d and iron.

I don’t know how I can request them. Can I just call the GP and get them printed and pick it up or would I have to get an appointment. Because I’m travelling next week, after that I won’t be able to visit my GP in person until mid January.

What would a diagnosis of CFS do for you, though?? There is no treatment, although some people find pacing their activities helpful. So even if you get the diagnosis, you will leave the Doctor's office exactly the same as when you walked in.

For that reason, all the time they're willing to refer or test, take it, because it could be the one thing that is causing the fatigue and can be treated.

@strawberrieshortcake you might have access to them online, if not, just ask the receptionist to print them off. You have every right to see them.