Fatigue in teen daughter & "normal" blood results

[northender]

I would appreciate any advice you can offer re my dd.
She is 18 and for context, she has a really healthy varied diet, is a rugby player and did regular HIIT type gym sessions. 2 years ago she started with generalised fatigue, low energy levels, needing to sleep during the day. No obvious trigger. All her bloods came back within normal range. No action taken

Since then, over the past 12 months there has bee a gradual deterioration in the fatigue. She gets episodes of acute fatigue if she exercises too hard (nothing like the level of fitness she was 2 years ago). This will involve a feeling of no energy (she describes it as feeling the energy drain from her while exercising) for several hours or a couple of days, really cold hands and feet and hunger++
Concentration is affected too. She finds she is only able to study for very short periods until she feels she needs to rest.

GP has done bloods again & prescribed vit D (her level is well above the adult threshold but just below that for children)
Her B12 is 230 (down from 240 in 2021) Both seem on the low side to me, but in "normal" range
TSH is 4.3 (up from 2.2 in 2021) Again "normal" range but some of her symptoms sound like hypothyroid
Creatinine flagged as raised but GP says not to worry

Could this be an auto immune thing or thyroid or something else altogether??

Went to GP this morning & she has been referred to the local CFS/ME service. Her older brother has ME which presented in a different way (he had more severe physical illness initially). I feel that her blood results warrant further investigation as I don't want her to be given a CFS diagnosis if there are other things that could be done and really want to know if there is some familial link. In short we felt fobbed off & not properly listened to. The GP asked lots of questions about stress and triggers which I felt was just trying to suggest it is stress related which I'm sure it's not. She is very well motivated and still exercises but paces herself & avoids letting her heart rate get too high which helps to manage the fatigue

Ds saw a fantastic endocrinologist privately but she now requires a GP referral which will definitely not be forthcoming at the moment. I am an HCP working in the NHS and am loathe to go private again, but feel that the NHS doesn't do justice to these type of conditions.

Any advice??

Have they ruled out long covid? Even if she doesn't recollect having covid, she could have been asymptomatic?

https://www.nhs.uk/conditions/covid-19/long-term-effects-of-covid-19-long-covid/

Sounds like classic CFS/ME to me, even without an obvious trigger. Do you know if the CFS/ME service she has been referred to is Paediatrician/Medically led? If so maybe they could advise and refer onto endocrinology, if they feel this is clinically indicated? I can understand GP's reluctance to refer with bloods within those ranges. Action for ME have a Healthcare service you can access, which may also be able to provide some advice from a specialist medical perspective (if your local CFS/ME service is not medically led, as many of them aren't). I do hope your DD gets the treatment and support she needs. I developed CFS/ME in my late teens, but was only diagnosed and treated in my 30's. Symptoms have very much improved with management and I have young family, a successful career and exercise (within my limits), but it's something I do have to be aware of. Stress is an exacerbating factor for me, so I do have to be aware of self care, sleep etc.

https://www.actionforme.org.uk/get-support-now/our-healthcare-services/healthcare-services-for-me/

I'm not medical but the TSH jumps out to me, I'm sure in other countries that would be classed as thyroid issue.. mine wasn't medicated until I got to 7.5 and only because I pushed and pushed

Dd3 had exactly the same symptoms but was anaemic and v low vit d. After a few months strong iron and vit d she's back to normal. She also gave up gluten and thus has also made a difference.

I know you say your dds bloods are normal but her symptoms are identical to dd3 (also sporty!)

My CFS/ME was post viral triggered by Epstein Barr Virus (Glandular fever), which is one of the classic triggers. Even though I was symptomatic of this, may aren't. Your daughter's blood test should flag whether she has had EBV at some point (prior to past 3 months), even if she wasn't aware. I wouldn't necessarily jump to Long Covid unless she has particular symptoms of this (e.g. respiratory, neurological).

I'm sure it's 4.5 or over so would be worth retesting because it would tip into sub clinical
Mine increased very slowly over years until eventually they treated
I accidentally ended up at immunology (long story) who seemed quiet, bored and interested in a condition I have. They did a load of bloods because they could and found antibodies and was diagnosed with hashimotos

Thanks for replying Pink
Long covid hasn't been mentioned, but I've considered it having worked with long covid patients. She has definitely had covid twice since this all started, but yes, could've been asymptomatic prior to those infections. In a way I would prefer her to have the CFS diagnosis because then she can access support at uni etc. But deep down I feel like there is something else with these blood results which could be either investigated more or treated. If none of that comes up with anything or makes a difference then fair enough, but at the moment I feel like there are still physiological causes to be looked at more.

Clutching at straws, maybe, but very hard having been through this already with ds. Fortunately he seems to be coming out the other side now, but it has been 6 years.

I’d say trust your gut. If you think something’s not right with your daughter’s test results then push for a referral or go private if you can - wait lists are terrible.

My daughter was mis diagnosed with CFS when she actually had a very rare paediatric immune disease. I felt at the time the diagnosis didn’t stack up. I should have trusted my mum instincts!

There’s another thread on here atm where a child is having seizures and one Dr asked the mum if the child could be day dreaming! Just too awful!!!

Push for the referral and don’t take no for an answer.

Wow, thanks so much for all the responses.
RichTea our service is AHP led but that's really interesting about the Action for ME service, thank you and really good to hear of your positive outcome. It's so fantastic seeing ds thriving now at 21 when I think back to how he was at 16. He'll always have to be a bit wary but he's doing well. What test would show Epstein Barr after the event? Ds was assumed to have had glandular fever at the start, but never tested positive
Kyse I've heard that re UK levels compared to other countries
Harkonen sorry your dd has been through this too. It's hard to watch as a parent isn't it? Dd has given up dairy as that seems to trigger gut symptoms (long standing) and feels better for it.

her tsh is suspiciously high, and had increased since last time. Plus she sounds hypothyroid in symptoms.

Beyond that, I can't help. It may be that tsh rises when there is another illness present. I don't know. But I would definitely investigate that tsh further.

Sounds like she is experiencing post-exertional malaise or post-exertional symptom exacerbation.

I have this due to Long Covid and POTS post-Covid. I also previously experienced the post-exertional symptoms due to CFS/ME after glandular fever. Some of my symptoms (including my cognitive ones) have been helped by using POTS management advice alongside pacing which it sounds like she is doing somewhat, but if she is getting significant symptom exacerbation after exercise then she is likely overdoing it and needs to find her baseline (series of YouTube videos below that helped me do this). This would also include cognitive tasks which people do not realise can be very fatiguing and hardest to figure out how to pace activity.

CFS/ME diagnosis can still be given even if it is Covid related after all this time. Long Covid can still be considered a disability for which reasonable adjustments can be made, I have had adjustments made at work for me and so has my husband who also has Long Covid. You can still have Long Covid due to mild or asymptomatic infection (my infection was considered mild).

https://www.potsuk.org/

https://longcovid.physio/post-exertional-symptom-exacerbation

B12 is way too low, folate is probably low as well and TSH has risen over the last two years and is now too high, which suggests that the actual thyroid hormones are correspondingly low. Also there is low vitamin D in the mix.

All this will be connected and it is possible, although not probable, that getting the vitamins up will kickstart the thyroid.

I was your DD ten years ago, albeit much older, and I was repeatedly told I had CFS and dismissed by GP and consultants. I didn't and I am well now, but I had to do most of the work myself.

NB when asking for advice like this, it really helps if you can add the reference range to any test results you post as they vary from lab to lab.

Long Covid is a type of CFS/ME. Most CFS/ME is post-viral fatigue that goes on longer than a few months. I think the referral was the right call. I’m not sure that continuing to exercise is right though as exercise can cause CFS/ME to worsen. That’s why they stopped the gradual exercise therapy that they had- it made patients worse and the CFS/ME flare up last longer. I think the advice now is lots of rest, accommodation at school/work and only start gentle exercise when you feel you have the energy to do so.

Hi Op, your dd's B12 is low and her TSH shows her thyroid is struggling. I would ask the GP to do antibodies for thyroid, to see if she has underlying autoimmune thyroid disease (Hashimotos). You absolutely can have symptoms of hypothyroidism at that TSH level.

Going out on a limb here, how much exercise was she doing at the time this started? What is/was her menstrual cycle like? Especially in young female athletes - relative energy deficiency in sports (RED-S). Think of it more of trying to run on an empty tank eg not getting enough calories, not getting them at appropriate intervals to refuel while exercising if she’s been doing a lot; you don’t have to be super skinny or have an eating disorder

https://www.childrenshospital.org/conditions/red-s

https://www.runnersworld.com/uk/health/a33589189/red-s-relative-energy-deficiency-running/

Yes I agree with this post. Test for hashimotos autoimmune as she may be wavering and having attacks.

I had very similar bloods - high TSH, the high creatinine, low vit-D and borderline anaemic. I was absolutely shattered. I've hashi's, and apart from peri-menopause slamming me into the floor, I've been fine once treated. But I had to get it sorted with a private endocrinologist as I wasn't hitting thresholds for further investigation on the NHS.

Good luck op, as another poster said, trust your gut.

What was her ferritin?

What was folate

Thanks again so much for all your replies, I really appreciate it.
Re Post exertion malaise, we are very aware of it but doing some exercise with HR monitoring is good for her mental well-being and is manageable at the moment.
I am happy to have the referral to the CFS service as a back up but it'll be a long wait & I definitely want to look at other things in the meantime.
Hashimoto's is something I've read about & fits both dd & ds but not really the age profile.
I think our next step is to get a full thyroid screen which is not going to happen through the NHS unless her TSH is much higher. Then when we get that we can decide what to do next.
I will post her ferritin.

What is her weight like? I’m sorry to say, but has an ED been considered?

People with EDs can be very secretive about food so even if you think she’s eating she may be hiding what she’s truly doing.

Ask GP for thyroid antibodies.

I have Hashimoto's. My tsh was only above 5 when diagnosed, but I felt like death, eyebrows fell out, etc. I need to keep my TSH below 3 to feel OK. GP eventually tested after I'd been back several times.

Definitely keep pushing for answers

I was told by GPs that I wasnt ill because my bloods were normal. Eventually I was diagnosed with myasthenia gravis (interestingly for your purposes one of the symptoms is weakness after exercising)

Definitely keep pushing for answers

I was told by GPs that I wasnt ill because my bloods were normal. Eventually I was diagnosed with myasthenia gravis (interestingly for your purposes one of the symptoms is weakness after exercising)

DD has it. She started showing signs around A level age. She almost worked herself to death trying to make up for lost lessons in order to get good grades (she got fantastic grades). She's in her final year at Uni and has just been accepted onto a Law conversion course for next year. I have no idea how she does it!

She gets v tired, a lot of pain, brain fog, and a load of other stuff, but she's still achieving brilliantly well.

I'm sorry your two children are having to deal with such problems. It seems so terribly unfair, when they're so young and have so much else to worry about too. You know it can all be managed, and your dd will learn to do that and live the life she wants to.

As a parent, I feel such guilt that somehow my genes did this to her (I have ms, and I do believe they're related - I know far too many mothers with ms whose children have CFS/ME to be able to believe otherwise). Regardless, it's the helplessness that gets me more than anything - I can't make it better.

You and your children are not alone. There are people who will listen when you get down, or frustrated or, like me, feel guilty and responsible and helpless.

It will be OK.

Ferritin 77
Folate 6.2