What to ask at this appointment

[whosaidtha]

I am suffering with really bad fatigue. It’s gotten worse over the last year. I am tired all the time. I sleep 10hrs at night and nap in the day. No problem falling asleep just always tired.
I went to the drs multiple times and had loads of blood tests. No problems found. Was referred to for cfs but they said I didn’t fit the criteria because I don’t need rest periods and don’t get extra tired by activities.
I had an appointment yesterday where they basically said sometimes they never find out the problem. And basically deal with it. I don’t want to just live with it. So I’ve booked an appointment with a different dr to see if there’s anything else that can be done. I know something is wrong.
so basically what I want to do is go into this appointment asking all the right questions to make sure I can get any help that is available. So what should I be asking? What can I suggest? Any referrals that would be worth considering.

other more minor symptoms include weight gain and poor memory.

thanks for any help.

Thanks for this. Got 1 & 15. Suggests that it’s not a sleep disorder.

If you’re resting a lot you might have cfs? Ask for a referral to them. Hope you feel better soon.

Sorry OP but you need to post the lab ranges too as each laboratory records it differently, otherwise your number means nothing. You may as well just post it says "black" for the all the sense it makes.

Don't look at the words normal, satisfactory or borderline. NHS levels are incredibly low compared to Europe or the US. Ferritin gets an iron transfusion at 20 over there (iirc) but our GPs won't even consider it at 5!

Sorry if I’m being silly. What do you mean the lab ranges? Is that on the results where it gives a range? Or something else?

Here in solidarity! I’ve been living with this awful exhausted feeling for about a year, I sleep like a log and nearly always fall asleep at some point during the day - if I don’t, I usually end up with a headache as I’m so tired!
Full blood test done last autumn showed mild anaemia, and not much else. GP gave me TXA to help with heavy periods (helps a little) and referred me to a sleep clinic which I attended early Feb but haven’t had the result yet.

it’s just awful isn’t it? I feel like I’m walking through sludge most days

It’s awful isn’t it. Please let me know when you get results back from the sleep clinic. I need to start thinking outside the box because napping all day isn’t normal or sustainable.

Have you had a heart check?
My husband had those symptoms of fatigue for years which have got much worse over the last six months. He’s put it down to anxiety and medication , all his bloods were fine in November.
It turns out he has heart failure which has been diagnosed through another issue and he’s had it for years.
Looking back it’s all adding up and its such a shame because he could have been given medication to help control it and not be in the situation he is in now.

When did this start? Did it come on after a virus or any illness? Sounds like a chronic fatigue issue. I know they have dismissed that but if the rest of your bloods are coming back fine then there will be something going on at a cellular level.

Yes, it will be next to your result. It will read something like

Serum Vitam B12 level: 300 ng/L (197 - 771)
The 300 would be your result and the 197 to 771 is the range. It sits nicely above the minimum so is good.

Serum Ferritin level - 17 ug/L (15.0 - 150).
The 17 would be your result and although it is above the minimum of 15 it is very close to the bottom. 17 is a long, long way from even half but it will still be classed as satisfactory or normal. It isn't.

The optimum is usually around the middle so try and aim for that unless you personally feel great on less. The bits in brackets will change depending on which laboratory does the work.

Great. Thanks. Looks like my iron ones are all mid which is good. I’ll have to start looking for other things.

It got worse after a tooth infection. Drs said they could check for infections that could have caused it. But could t say when I had the infection or if it definitely caused it so seemed pointless to me.

That’s interesting. I’m going to make a list. I’m not going to let them fob me off.

Thanks for all your help. I’ve got a few ideas to talk to the dr about. I’m going to mention heart problems, get my hormones retested so I know which part of my cycle they came from. But mostly I’ve also convinced myself I’ve got hashimoto’s despite my tsh level being normal.

additional question. what is T4 in relation to thyroid function because I can’t find this anywhere in my records? Would it only be done if tsh was low?

I determined to find out what’s wrong and not let the drs fob me off!

I bet it’s nits

I don't know if this is still useful, but T4 is the hormone that your thyroid makes. It converts to T3 which is the active form that your body can use. A full thyroid panel include TSH, T4 and T3. I believe it's relatively unusual but not impossible for TSH to look ok but there be issues e.g. with converting enough T3. Also, check the ranges of TSH. Some people can be at least mildly symptomatic without it being very high.