I'm arming myself with questions! Fatigue and GP appointment

[ByLimeAnt]

I've posted on here a few times as I've had fatigue that has got steadily worse over the last 12 months. This has been to the extent that I've now finished a month on reduced hours as I just wasn't managing (had to come back FT due to financial issues).

Ferritin initially 12 then went up to 37 with ferrous fumarate. Thyroid panel fine (not sure about B12). Hb fine. Colonoscopy fine, my periods are every 5 weeks for 2 days, very light and assuming they are on their way out (I'm 44).

Unfortunately I saw Incompetent GP last month who told me it was all in my mind and due to a longstanding MH problem. Luckily he's not my normal GP, who is fantastic. Have an appointment with Fantastic GP next week.

What do I say/ ask for?

Goal: I want to not be tired.

I think I've been fairly extensively investigated so I'm not asking for more tests. I just want the energy to get through the working week.

I'm terrified I have CFS.

Please, all suggestions welcome. I need to fix this.

Can you give us some actual figures, with reference ranges? That would make it easier to advise you.

I was utterly exhausted for nine years. Turned out not to be CFS at all, despite what I kept being told. It was low B12 and folate, vitamin D deficiency, ferritin deficiency and underactive thyroid. All sorted now.

OK:

HB was 136
Serum TSH 1.89 (does say borderline )
Can't find B12

Thank you

I think 37 ferritin is still low. I saw my gp for tiredness and mine was 27 and she put me on tablets. I think it needs to be over 70 to keep the hair growth cycle going. My hair has thinned a lot and that’s another reason I went.
I read taking the iron tablets every other day gives better absorption than every day, take with vitamin c, take on empty stomach and no tea/ coffee for a few hours. That should help absorption.

Agree with pp, your ferritin needs to be around 70 for healthy hair growth.

I can always tell when I need a vit B12 boost - I can't walk in a straight line and I feel as though I walking through treacle. I also huff and puff 🙁

The hallmark symptom of ME/CFS is Post Exertional Malaise, or PEM, which is a worsening of symptoms after minimal physical or mental activity, completely disproportionate to the activity itself. There is a delay between doing the activity and feeling worse, so eg you might go to the gym and feel fine, but two days later get horrible fluey symptoms and spend the day in bed.

Unfortunately most GPs haven’t received any training in ME/CFS (or if they have its very out of date) so they are not confident diagnosing it. You have to be your own doctor and think through whether there’s a pattern to your fatigue, and if there is, explain it to the doctor.

This is all in the latest NICE guideline for ME/CFS. The GP may not be aware of the new guideline but should be willing to follow it if you tell them about it: www.nice.org.uk/guidance/ng206

Good post by @Quercus5. Chronic fatigue syndrome or ME as most patients prefer, is not just fatigue.

I would guess you're starting perimenopause and hrt is worth a go.

MEcfs is characterised by PEM as @Quercus5 and non refreshing sleep. How do you feel when you wake up ? Are you just as exhausted?

Also, my specialist mentioned alcohol intolerance as being an important factor. I just fall asleep if I have alcohol. I still do here and there but half a beer and I just have to sleep and can't keep my eyes open.

I have a ton of other symptoms.... If I've over done it (and this is doing completely normal activities that most people wouldn't think about like going out for lunch or having a short walk) I can end up with flu symptoms. I felt like I had a permanent hangover in the early days.

I have stomach issues too. Nerve twitches. Tinnitus. Noise and light sensitivity. Trouble getting to sleep and staying asleep.

It's diagnosed when they've ruled everything else out and when you have the key symptoms.

Keep a diary/tracker.

Sorry you feel so awful.

I second the keep a diary suggestion, that way you can be very specific about what you are feeling and what preceded it.

It could also be compounded by potential perimenopause. I am definitely in peri but still have regular periods and no night sweats. I have other symptoms which come under peri although I think I started in that at 48.

I would print out the ME/CFS NICE guidelines as if your GP is good they will be happy to receive it plus it makes you more informed too. My sister has CFS so I really feel for you. I have chronic fatigue caused by endometriosis.

https://meassociation.org.uk/wp-content/uploads/2025/01/MECFS-Primary-Care-Guide-A3-SNOMED.pdf

Thank you - but I really am praying it's not that! Sleep is refreshing but doesn't last long. I'm like a mobile phone that doesn't hold charge. But yes to post exertions malaise, totally disproportionate

Ask if it's possible to do bloods to screen for auto immune conditions. Many can cause extreme fatigue & develop later on rather than being born with it. No family history of auto immune conditions does not rule it out.

Also have you had any nasty viruses? Post viral fatigue can be brutal.

Ferritin is still low at 37. It will read as normal on the results but it is still low.

And if you stopped your iron tablets it may well have drifted down again.

You need to know why you don't have enough iron - either you don't eat enough, don't absorb enough or are losing it in periods/poo, this last appears to have been ruled out.

Sorry to say but I often describe how I feel with that mobile phone analogy.