16yo constantly tired and ill

[fretaway]

DD is 16 years old, nearly 17 and issues for a few years with constantly feeling exhausted, headaches and generally feeling ill.
It’s not normal tiredness, she would literally just fall asleep on her bedroom floor and wouldn’t have the energy to even get up when we try and wake her.

Blood tests showed she had low iron back in April and so she has been taking Ferrous Fumarate tablets (210mg). Her last tests in June showed she was within the normal range for ferritin levels, albeit the lower end. She does think she feels especially tired when she has her period though.

But that doesn’t explain her feeling ill constantly, she is just about dragging herself to school and seeing out the day. She has had other blood tests for other conditions such as EBV, thyroid, cortisol etc and all normal. Been back and forth to the doctor and paediatrician who just fob us off with saying “well it’s very common for teenage girls to feel like this”. In the last year it’s been very difficult to even get an appointment with the GP, I’m waiting to hear back from them currently.

I don’t know where we go from here, is there anything else we have overlooked? I don’t know if we can increase her iron supplements without it being too much. It’s just awful seeing her so miserable.

Have you checked B vitamins?
also, I think low iron could explain the other symptoms, when I had low iron I felt so exhausted, unmotivated and physically weak.

Has she had Covid? Could be long covid if so.

Firstly, it's not normal, so trust your gut on that one. Any weight loss?

It isn't 'normal', but post-viral fatigue etc. is something that happens. So is stress-related exhaustion.

The fact the bloods haven't shown anything yet is at least something.

I would try to keep a diary, ask her to record her energy levels.

What is her diet like, her routine, her exercise, her activities, her school attainment?

Has she had tonsillitis? Has she had glandular fever? Has she had Epstein Barr? Has she got low iron stores (non anaemic iron deficiency) - they often only check certain iron bits like hb and then say you’re fine but you’re not actually fine. Also just because your levels come back fine, doesn’t actually mean they fine. If they’re low, they can still be making her feel ill. They need to be good. Not “fine but low”.

if her periods are heavy they can be draining her each month but lots of doctors will just deny this. She’ll likely be able to actually feel this in her energy and illness.

Oh and does she feel better if she has antibiotics?

Just keep going back to your GP and pester them until you get some answers or a referral. This is not normal!

Glandular fever?

Is it worse when there has been lots of social interaction? Obviously can't tell from your op but do you know about autism in girls? Could be autistic burnout if she's autistic.

What's the condition like PMS but like 100 times worse? PMD or something. That can make you excessively tired but I think usually there are other symptoms.

Have you checked vitamin D levels?

Does she like school? Generally happy in herself? Could it be depression or something mental health.

ME makes you tired.

I found asking the GP to put in writing they are refusing to do further tests worked to get me an MRI I needed when I was fobbed off. For me it showed I do have a serious problem and it's not all in my head like the drs had been trying to get me to accept. It's well documented that women experience health inequality drs do t listen to us like they do men

Sounds like it could be Coeliac disease. My daughter main symptoms were breathlessness and headaches. She has never really had and abdominal symptoms.

www.coeliac.org.uk/information-and-support/your-gluten-free-hub/home-of-gluten-free-recipes/healthy-eating/iron/

Have you tried electrolytes? You can buy them from Boots. Might give her a boost of something missing and hydrate her at the same time.

Her B12 levels are normal and at a good level. She feels especially exhausted when she has her period so do wonder if iron levels are being depleted.

Apologies if already said. The NHS version of what constitutes good ferritin levels are seen by many as wholly inaccurate. Many would say you need to aim higher than what they call ok/average. There are some good FB groups who will know more on that.

It could be so much that we're obviously all widely speculating. Just wondering if she's hyper mobile/ flexible. It often causes problems with how blood flows upwards against gravity and can make you feel tired and want to lie down/ be on the floor alot. This issue associated with hyper mobility is called POTS. It does tend to cause other issues like rapid heartbeat at times and dizziness so might be totally off here. Low iron is often found with us. That will make symptoms worse.

It's worth checking for all nutritional deficiencies and coeliac as suggested.

She used to get to tonsillitis a lot when younger and now whenever she gets ill she usually gets inflammation there and glands get swollen. Last time she had antibiotics (just before her GCSEs) and it cleared up.
Not had Epstein Barr and she did have a blood test for that, it was negative. also checked for ANA (anti nuclear antibodies) in case of an autoimmune disorder.
Another poster mentioned Vit D and this was actually low so she is also taking supplements for that.

Good point about the iron tests, I’ve just gone to check her previous tests and they are all near the bottom of the threshold.

She does actually have some hypermobility (runs in the family) so that is really interesting.

We had also wondered about post viral fatigue, long Covid or some other chronic condition. She was quite tired after Covid and did have what she described as fast heartbeat on occasion for a while after, but it seems to have gone now.

She had a coeliac test around 4 years ago and no inflammatory markers there. She does have milk, egg and nut allergy also.

@fretaway I don't know why we end up getting some sense about another person who is hyper mobile but I just felt it immediately when I read your post. I have Ehlers Danlos Syndrome ( hyper mobile type) and POTS. This might explain alot.

Even if she doesn't have POTS as such it's worth just looking into increasing fluids, electrolytes and getting a BP cuff and heart best monitor to test it out at home. Aiming for much higher ferritin than NHS suggests is important. Alot of us increase salt and it helps blood profusion alot. If you look into it online it may make more sense.

I don’t think she is autistic, but I do think stress can be a factor for her though. However she had a phase of being ill in the summer when there wasn’t any stress at all.

She is in Sixth Form now and seems to like it and has friends, but the sickness is preventing her from fully enjoying it.
The problem now is the fatigue is affecting her school work which is causing her to worry, so it’s a cycle.

Just to throw another spanner in - for some reason, there is a very strong genetic link between hyper mobility/ EDS and being ND.

On multiple health groups I engage in, the link is overwhelmingly apparent. It doesn't always happen though. I have EDS and my child is Autistic/ ADHD.

I had a friend who was like this and kept getting told their iron levels were normal.....they were, but right at the very bottom of the normal range (which is huge!) and for people who are active, working full time or going to school/college, she could even still be growing, and menstruating women, the bottom end of low isn't high enough for them!

So much useful information here, Thank You so much to everyone who has replied. I had never even heard of POTS but it’s definitely something we are going to look into as she does have a lot of the symptoms.

I definitely need to look at getting her iron levels up more. We have an appointment with the GP in a couple of weeks time so I’ve asked dd to make sure she logs symptoms every day, I did ask her to do it before but she has been a bit inconsistent with it.

If she always gets tonsillitis when she’s ill it could be they’re not fully getting better when she’s “better”. They cause a lot a lot of problems. Chronic inflammation. Non descript feelings of illness. Malaise. If she can get them out that may very well change things so document (at gp) every single time she gets it or any sort of tonsil inflammation. Every time because it’s a fight to get them out. Spatone for iron, vitamin d, magnesium and absolutely push to have regular iron checks. Get bloods redone after 3/6 months and don’t give too much obviously. It’s awful when you feel ill all the time but there’s “nothing wrong with you”. There is but it might just be low level chronic infection/inflammation.

I second this, or at least a food related issue. Request a food allergy test form the doctors to start with. I had extreme fatigue for 15 years along with some gastrointestinal issues and finally got diagnosed with multiple food intolerances!