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.

@gobbynorthernbird I will of course go to the cardiologist as it is what the GP recommend but I have no idea the waiting time for these appointments and it seems she has put my fatigue on the back burner to focus on this.

I’m sorry to come and complain but the fatigue is debilitating at times and I really regret telling my GP about the heart palpitations as she has completely run with that and is ignoring my exhaustion.

I honestly think I’m going to ask for a different GP for the next appointment and push for answers about the fatigue because I don’t think I can last even the next few months feeling like this.

You really do need to endure a battery of tests otherwise, if your heart is damaged and it’s ignored then doctors will be liable.
My husband felt tired, a bit cold and had a couple of palpitations. Turned out he’d had a heart attack
Everything obvious needs to be ruled out first.

His age and family history had no bearing whatsoever.

Why are you so absolutely adamant that the cardiologist will not be able to help you? That your fatigue is definitely nothing to do with any potential heart issues?

I’m trying so hard to explain but I just know it isn’t my heart. The heart palpitations have nothing to do with it because as a previous doctor told me, it is a very common symptom of iron deficient anemia which I have had on and off since early teens.

I was shocked that the doctor even gave it a second thought after I told her how I have had the palpitations for years before my chronic fatigue started.

@gobbynorthernbird @1Morewineplease

And I know the whole cardiologist thing is going to take at least two months to get through and my fatigue will continue throughout all this when I just want actual treatment.

You're being really obtuse. Palpitations are a symptom of many things.

@gobbynorthenbird I don’t think I’m being obtuse, my previous doctor told my it was because of anemia.

As PPs have said, CFS is a diagnosis of exclusion. If you get to a diagnosis at all it's from crossing everything else off the list. IF you do have CFS then every specialist appointment, including cardiology, is a step towards reaching that conclusion, and by referring you your GP is simply helping you on that journey. They need to exclude cardiac issues before they can diagnose CFS at all, so make a choice to see it as a positive. And if they do find a heart problem, to your surprise, then that might be a relatively easy fix with medication.

I think it's quite possible that your GP does have CFS in her mind, but it's her job to follow the process and that doesn't mean leaping to a diagnosis of exclusion or sharing with you the entire differential diagnosis list she will have in her head. She's referred you to a consultant. That is helpful to you in getting to the bottom of this, whatever the outcome, and referrals are expensive and not made lightly. She is taking you seriously.

Are you working? Have you been signed off?

I don’t think she’s being obtuse gobby she’s clearly on her knees with exhaustion. I definitely think it’s worth seeing a different GP strawberries

@HoHoHolly I am a full time student so I’m not working I guess. Also I do understand the elimination diagnosis but I feel like cardiology is a large leap that she is making.
I have already been tested through blood test for many other things I have listed above.
I definitely know how expensive the referrals are and especially with the lack of funding in the NHS I can’t get out of my mind how much of a collosal waste of money my referral is going to be.

Also she keeps brushing off the fatigue symptoms specifically. It’s not because she believe the heart palpitations is linked to the fatigue-she said so herself. She is only focusing on the heart palpitations when I have said many times that the fatigue is what concerns me.

I understand what you guys are talking me but I can’t in good conscience go to the cardiologist when I am taking time and money away from someone who actual needs the appointment. I think I will ask to be transferred to another doctor after the next appointment and move forward from there

@Aloe6 thank you. I fee like people can’t realise how frustrated I am that I’m being led down this cardiology path when my symptoms don’t lie there at all. I think a new GP with a fresh perspective would be better for this future.

What does your GP think about your low neutrophils? I would be more concerned that I hadn’t been referred to a haematologist yet if I was you.

@cluckyandconfused she commented that people from certain ethnic backgrounds (that I belong to) have lower neutrophils counts and I have had low neutrophils since my first blood test around 6 years ago so she thinks it is natural for me.

@strawberrieshortcake I would still go to the cardiologist just to rule this out. I have also been referred there as one of the symptoms I have is on and off chest/back pains, although these have eased off now I’m not actually able to do anything. She was adamant I go even if I was feeling better. My appointment is on Monday.

If you’re supplementing for everything and still have symptoms then I’d suggest that you do look further at the gastric side of things as well. It could be a malabsorption problem of some kind (low stomach acid, which presents exactly the same as high stomach acid and sometimes has no symptoms other than fatigue, Candida overgrowth in the gut, H pylori).

If you bc still think it is CFS then I’d suggest doing some reading of Dr Myhill’s website as she has specialised in CFS for many years.

It's still worth doing a full exclusion diet, I tested negative for gluten intolerance but it was the thing that caused issues when reintroduced. Not saying that it would be the same thing for you but it is worth trying it as tests alone often can have false negatives.

As others have said as well, CFS is a process of tests, I got dismissed from the CFS team and was directed back to the GP for more tests and things but my symptoms got much better when I got pregnant a the beginning of my CFS investigation. They like to be very very thorough with the testing for it. Though where I was then the CFS team would deal with people who didn't have it diagnosed but had issues with pain/fatigue so they could offer help in the form of pain/fatigue management and physio. The management stuff was quite ridiculous really and things you'd likely know but the physio helped me.

@sparklesandmoresparkles @QueenOfCatan I will ask my doctor about dietary adjustments after the cardiologist appointment just to see if they may be the issue. I’m just worried about how long it could be to get a cardiologist appointment.

Mine was 3.5 weeks between referral and appointment, I’m in W Yorkshire. But you could definitely start doing the diet things before then. I’m the same as QueenofCatan and have a gluten intolerance that didn’t show up in any tests. I don’t have to be completely gluten free, but if I avoid anything that has a mainly gluten base, I’m ok. So I just avoid bread, pasta etc as part of my staple diet. But I can have the occasional crumpet or Yorkshire pudding without it causing problems

@sparklesandmoresparkles I could try the gluten elimination but I think I will ask my doctor beforehand as I already do not eat dairy so it could lead to a quite restrictive diet.

You only need to stay clear for 2-3 weeks before gradual reintroduction. But lots of people are both gluten and dairy intolerant, so you would definitely be able to get some help with what you could safely eat.

I'm the same as sparkles in that I didn't have to cut it completely. I did for the first 6 months but after that it was fine. A plate of pasta or some real bread would give me the brain fog and bowel issues the next few days and having it regularly put me back to full on fatigue and pain and the rest, but it amazed me how much it affected me to remove it, I didn't think that it would do anything. I seem to be able to tolerate it a lot better again now after 5 years having a low gluten diet (since my second was born I was having a big amount every other day!) but I prefer to keep it minimal as I started feeling rough again and I categorically don't want to be as ill as I was in my early twenties again.

Well I’ve got a cardiology appointment for late February so my fears were confirmed. I just hope the GP does something for the fatigue while I’m waiting.

Wow that is late. I would definitely push your GP to investigate the fatigue before then. It may be heart related as it can be a cause but you don’t want to wait until then before looking at other potential causes, to them have to drag it out months and months with other referral waiting lists. If your GP doesn’t think the fatigue is heart related then they have no excuse for not exploring that in the meantime. Good luck!

@sparklesandmoresparkles Ill have an appointment for the results of (another) blood tests so I will definitely have to ask if anything can be done about the fatigue in the meantime.

My diagnosis of CFS came after two years of testing. It's not quick, and rightly so given that it is diagnosed through exclusion. It is awful, and I feel for you, but patience is your only choice. It's not a diagnosis you want either. Mine is severe - I spend a huge portion of my life in one room, in pain, but there is fuck all anyone can do to make me better. Maybe one day, but for now there is no treatment. Keep pushing for all the tests you can. I had blood tests, scans, xrays, ecgs etc before I was diagnosed and they found a few other things that would have been totally missed otherwise.