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.

Have they checked your thyroid and do you have access to the results? For hypothyroidism you need to have a tsh level of 10 or over but the ideal range is up to three so there’s quite a large gap between actually ok and ‘let’s do something about this’.

Mine never got higher than 8 but I felt sluggish and rotten. a silver lining to other treatment I’d received for something else meant that there was a motivation to address my thyroid which over twelve months just kept rising from 5 at the first test.

if you are over 3, I think there’s a strong argument to monitor (six monthly maybe?) and treat if it’s clearly rising.

others here are very knowledgable about the thyroid so do listen to anyone who expands on my very basic knowledge!

Menopausal?

How old are you? Could you be in perimenopause?

Have you had a full blood count taken, do you know your ferritin levels?

I felt like this for years and was told all was normal then discovered my GP had knew all that time that my ferritin levels were below 3. (she left my with these levels for 4 years). I ended up needing infusions.

It does sound like thyroid. If they checked it before it may be low but doesn’t meet the threshold for you to be referred to an endocrinologist.

I would ask what your thyroid levels were last time and take a note of it. It might be worth seeing an endocrinologist privately. If they needed to do a bunch of tests or something then it could get expensive but perhaps they could prescribe straight away, based on your bloods. I don’t know. But good luck I hope you get some relief from your symptoms.

Have you actually seen the blood test results or just been told they’re normal? You need to look at them yourself as sometimes what a medical professional considers normal is in actual fact not normal, or normal for you.

Did they check your Vit D levels and white blood cell count too?

Keep a sleep diary and ask to be referred to a sleep clinic to check for sleep disorders, they don’t show up on blood tests and need a neurologist.

To answer a few things.

they checked my thyroid and I was told it was normal although I haven’t seen the results. Is there a way I can get them?

I thought menopause despite only being 36 but they tested my hormones and said all was normal.

I don’t know what ferritin is but I’m sure they checked it. Is there a way I can access blood test results? Should I phone up or can they email them? Or is there an app?

my vit D levels were low a few months ago and I was told just to take a supplement. Which I now do but doesn’t seem to make a difference.

thanks for all the advice. I’m really grateful.

A GP reviewed my blood results and put, satisfactory no further action. When I looked more closely, my ferritin level read 24 and it said this was in line with low stored iron and anaemia. When I queried this with the practice a GP texted me later and said I need to take iron tablets for three months and then be tested again.

You can’t trust doctors these days. You have to be your own advocate.

I’m signed up for system online. You can sign into your record and check everything.

Ferritin is stored iron.

The dr yesterday mentioned both sleep clinic and neurologist referral but said that probably a neurology referral would be denied as I didn’t have any specific symptoms and sleep clinic wasn’t needed as I don’t have trouble sleeping. Maybe I should bring this up at my next appointment for a second opinion?

You’re napping in the day though, and ‘trouble sleeping’ is only a sign of insomnia and not conditions that cause excessive sleepiness. GPs have no training in sleep disorders. I’d definitely want to rule this out.

You can sign up to the nhs app and be able to see any results although this can take a while because you have to sign some data agreement forms with your surgery. also I didn’t have any historical access when I signed up, just access to things from that point forward. You can ask to have previous results printed out for you at the surgery though

I’m not really following your doctors reasoning for excluding sleep disorders though, if you had something like sleep apnoea quantity wouldn’t be indicative of quality.

Definitely ask to see your actual blood test results. And sleep conditions aren't just insomnia so worth investigating but blood test results first as doctors often ignore low ferritin in women, especially if ferritin is low but haemoglobin is within range.

They did a risk factor assessment for sleep apnea which came out really low.

I’ve downloaded the app but I’m going to call the surgery to get my blood test results.

Agree it's worth getting a second opinion on thyroid depending on what your numbers are - there's a really good Thyroid UK forum on Health Unlocked if you're happy to share test results there once you have them. As pp said, some people are symptomatic in the range before every doctor would agree to treat. I've been recently diagnosed and it's been unmanageable fatigue, weight gain and if I can't see something it might as well not exist!

That’s good re: sleep apnoea. Tbf there’s quite a lot to rule out before heading down the sleep disorder path I think.

Thanks so much everyone. You’ve prompted me to request my blood test results and they should be available to collect later today. Hopefully they will show something the drs missed.

Have they done screening for Obstructive Sleep Apnoea? This can cause daytime tiredness and sleepiness.

Whilst it's more common in people with a large neck circumference (and males, and over 50s) it can occur in slim young women as well.

Sorry cross posted - I can see they screened for OSA, but the usual screening is heavily weighted by male/age/bmi/neck circ - the usual screening tool is the STOP-BANG questionnaire, together with the Epworth Sleepiness Score

You can have a look at these and see what you think

https://osapartnershipgroup.co.uk/stopbang

I agee with cakeandteaandcake above - not having trouble sleeping at night doesn't rule out sleep disorders.

Also yes definitely check what your ferritin is. The range they use as "normal" (for ferritin and Hb) is considered by some to be too low, especially for women. Worth having a look online for more details.

I ask the receptionist for a printout of blood results. You need to know the figure AND the lab ranges as these are different depending on the lab testing. Do not accept them saying normal without checking yourself.

my vit D levels were low a few months ago and I was told just to take a supplement. Which I now do but doesn’t seem to make a difference.
If they are low you need a 4,000 iu with added vit k for absorption. A healthy person needs to have a minimum of 1,000 daily if living in the UK as we don't get enough sun. Most shops sell 400!! (Btw a GP loading dose is between 20,000 and 50,000 so you being on 4,000 daily won't overdose you).

Ferritin needs to be around 70 to 100.
B12 needs to be around 300.
No idea about thyroid, sorry.
Folate is another one to check carefully but I don't know its optimal number either.

If your bloods come back within optimal ranges then ask about autoimmune diseases and a Rheumatology appointment.

I’m in a similar boat. My GP keeps saying everything is fine but I am exhausted all of the time and sleep and rest at every available opportunity.

What @LittleGreenDragonssays.

you probably need a lot more Vit D every day to get your levels back up and it can take 3 months to restore levels.

you need to know Vit D, Vit B12, folate and ferritin and iron and heamaglobin levels.

get the app, or ask for a print out from your GP

Do eat three meals and enough protein every day ?
Sleep okay ?
Exersise regularly?

thanks for all your help. I’ve got my results and gone through them for the things mentioned.

thyroid is tsh? That was 1.1

serum ferritin was 39

b12 641

there are loads more that I can post if it’s helpful. Some are marked as normal and some satisfactory so I’ll check the satisfactory ones more carefully later.

Thanks. I just checked and vit D was low but not deficient which was said at the time.
I eat well, sleep ok. Don’t exercise really. I used to but I’m just too tired now.