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??

You can get a full thyroid panel with MediChecks

sounds very like a thyroid issue to me.

I had glandular fever at 16 and although I recovered within a few months, I was left with tiredness, brain fog and just fatigue really. This was 30 years ago and doctors were not interested. I still struggle now. Could she have had that? Not much different from a flu really, I only knew because I also had hepatitis a at the same time. Definitely keep pushing and she really needs to rest when she can, which can be very frustrating as a teen!

Well it's not the ferritin then. That's perfectly fine.

Glandular fever (mono) is what triggered 7yrs of CFS/ME in my little sister.

Pacing does not mean no exercise, and post-exertional symptom exacerbation is not just brought on by exercise. The energy outlay is cumulative encompassing all activities including cognitive and physical. If she is still getting fatigued and having dips then overall she is likely overdoing it. She doesn't necessarily have to stop the exercise if that is helpful, maybe looking at how she can plan rest gaps/days between activities or high activity days or roll back energy outlay for other areas might be better. Changing the type of exercise to less cardio intense exercise also might help, yoga massively helped my CFS recovery alongside resistance gym exercises using weight machines rather than cardio.

Things you can do to reduce energy outlay for example:

Taking computer rest breaks away from screens every 20 mins for 10 mins, taking half hour lying down rest breaks in the dark twice a day with no audio or visual stimulus. Planning in less physical activity on a day where she has exercise planned, reducing physical energy outlay by sitting down to shower, chop food, walking less from A-B, taking a taxi home after exercise instead of the bus. There are many ways to reduce the energy outlay that don't compromise on the benefit of exercise.

I agree in that in sounds like it could be thyroid based. It generally takes years to get a diagnosis in the UK as guidance with TSH is set so high. Elsewhere, tsh over 2.5 gets you medicated!
If the GP won't test antibodies, medichecks as suggested would be a good shout.

From personal experience - the sheer exhaustion, hair falling out, lack on concentration and extremely cold hands/feet is very noticeable when my tsh tips over 3+

A friend of mines son's TSH was borderline and he sounds similar to your DD. Previously Sporty.
He is now feeling much better with thyroid meds.

Again thanks for all your replies, it is really helpful. Thanks also for sharing your stories as the feeling that you're not alone is so reassuring.
I have ordered the advanced thyroid screen as I asked GP for further investigation of thyroid & she refused. If it is positive for the antibodies then we will also get ds tested & go back to GP. The age profile for Hashimoto's is older but I guess if thyroid problems take so long to diagnose then that will affect the age stats. I would feel so much better in a way if that is the outcome as everything will make more sense & can be managed, but if not then the CFS referral will be helpful.

Fingers crossed for some answers!

Just a quick tip with the blood test - thyroid groups online always advise to do them first thing in the morning so it's a fasting blood test. Tsh readings tend to be much more accurate (and slightly higher) with fasting bloods

There is a blood test that confirms whether she’s had glandular fever.
it’s worth doing.
i discovered I’d had glandular fever through this blood test and didn’t even know it - in hindsight it explained a period in my late teens when I felt exhausted and low energy for months

I was diagnosed as having had glandular fever about six months after my infection by blood test. It would be an EBV antibodies group of tests. I later had thyroid screening done privately including free and reverse T3 not included in initial NHS thyroid testing routinely which didn't show anything up hence the CFS/ME diagnosis.

There are some supplements that have helped me with my energy levels post-Covid including a methylated B vitamin complex, CoQ10, Omega 3 (cognitive function) and D-Ribose (one teaspoon in water taken if very fatigued before bed at night). Trace elements like selenium and zinc are important for mitochondrial function among others so a good multivitamin with trace elements is worth taking. Getting exposure to day light in the morning and reducing blue light exposure to screens in the evening is also useful to improve night time sleep for melatonin production.

Nutrients for mitochondrial function:

https://www.sciencedirect.com/science/article/pii/S0261561418324269

D-Ribose:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5959283/

Glandular fever testing info:

https://labtestsonline.org.uk/tests/epstein-barr-virus-antibodies#:~:text=EBV%20antibody%20tests%20are%20more,%2DIgG%20and%20EBNA%2DIgG.

From the link

"Here are the commonest patterns of results and what they mean:

1. Results: VCA-IgM and VCA-IgG and EBNA-IgG all NEGATIVE.

   Means: You have never had EBV infection.

2. Results: VCA-IgM and VCA-IgG POSITIVE, EBNA-IgG NEGATIVE.

   Means: You have recent EBV infection (in the last 4-6 weeks).

3. Results: VCA-IgM NEGATIVE, VCA-IgG and EBNA-IgG POSITIVE.

   Means: You have had EBV infection in the past, but it was more than 6-8 weeks ago. (This would mean that EBV is not likely to be the cause of your current illness.)

Occasionally the results on your first blood sample may not be clear-cut. In this case you may be asked to have a follow-up blood sample taken in a few weeks’ time."

Folate is too low as well. Your DD might benefit from a good B complex with methylfolate ( not folic acid). Good brands are Thorne, Solgar and you can buy from Amazon.

Do come back with the results of the full thyroid screen, with reference ranges.

I think around 80% of adults in the UK would have had glandular fever in their lifetime and test positive for EBV antibodies, so not sure anything would be gained from this myself. The screening bloods for CFS/ME should include this in any case, so your DD may have already been tested OP.

My son has had post viral fatigue and it lasted pretty much a year which blew my mind. He went from sharp and articulate to exhausted and zoning out at school - he was hospitalised for five days as his oxygen levels dropped so low during a chest infection. He also developed anaemia and had night sweats and sleep walking. It was a horrific period on our lives as it was like watching him turn into a different person! He’s now on supplements and a really good fish oil and we’ve removed cows milk from his diet on advice from a Dietician and he is finally coming back to us. I would never have believed a young person could be so badly affected post virally until I watched it unfold before my eyes

Sorry for the lengthy radio silence, but A levels and life got in the way so now I'm back for more advice if you don't mind. Since my original post 3 months ago dd felt she was a bit better and managed her exams well with pacing etc and taking some supplements. We did get the advanced thyroid screen blood test privately and the results were as follows:

Folate 9.26 nmol/litre (norm 8.83-60.8)
Ferritin 118micrograms/litre (30-150)
B12 48.3pmol/litre (norm 37.5-188)
VitD 98.8nmol/litre (norm 50-250
TSH 2.28
Free T3 5.44pmol/litre (3.1-6.8)
Free thyroxine 18kIU/litre (12-22)
Thyroglobulin antibodies 18.3kIU/litre (0-115)

So TSH was back down to 2021 level from 4.3 ealier this year, but folate, B12 and vitD look very low end of "normal" to me. Comparison is difficult because some of the levels are in different measures to the ones the GP used so hard to compare. She is now struggling again but needing to get ready for uni & wants to do pre season rugby at uni.
I'm aware there are some draft NICE guidelines out for management of B12 deficiency and it recommends that a B12 as low as hers although in normal range, should be investigated further. My inclination is to go back to the GP and question the relatively low B12 & folate in a young woman with a pretty healthy lifestyle and ask for a private referral to the endocrinologist who saw ds. The other thing is the fluctuation in TSH.
However we are on borrowed time as far as uni goes and she is going away so won't just be on hand for appointments & investigations. And I feel like I'm at the end of my emotional tether watching my second child go through a similar thing to her brother, yet determined to do what I can to get answers.

I'd be really grateful for any opinions or advice

Anyone??

Please see my post above, but if you do nothing else, sneak into her suitcase:

2,000iu vitamin D softgels
A good B complex with methylfolate

And ask her to try to remember to take them.

Have you name changed JudyJulie? I can't see another post but I had taken note of the one advising re the B complex with methylfolate & we've already looked at getting that.
Is any GP going to investigate those results any further or are we wasting our breath? I'm a health professional so I want to believe in the system but am struggling. I really want to know why these are low, it's definitely not poor diet. She has a history of IBS type problems from being about 4.

Has she had a blood test for coeliac OP?

My daughter is similiar, we've never found a cause. I thought for a long time that it was her ferritin level, it was rarely more than 10. But after pushing for years for an iron transfusion, it then didn't fix things - I was so sure that it would. She has a CFS diagnosis now and has since been diagnosed with a more serious condition (not connected to the tiredness). There are always issues with her blood tests, high cortisone, thyroid worries. Doctors never do anything, it's always keep testing then she'll get a result just over the borderline and they'll say it's fine. Now she won't discuss, after a particular GP was horrible and she's resigned to it. She is working over the hols and goes to bed when she gets home at 5.

Also echo this. DD can't tolerate gluten, but her blood tests for coeliacs are fine.

Test was negative for coeliac but she does struggle with gluten

Susanna sorry to hear about your dad. It's so difficult isn't it? DD has had a similar experience with a GP so is reluctant to take it any further

Dd obviously, not dad, damn autocorrect!

I'd ask the GP if the coeliac test included a test for IgA deficiency. Normally for coeliac you test for IgA-tTG levels but those with IgA deficiency should be tested for IgG-tTG antibodies instead of IgA-tTG. The normal IgA-tTG test won't work if someone is coeliac and also IgA deficient.

Just worth checking as a lot of her issues ring coeliac bells. There are so many autoimmune issues it could be though, I'd be pushing for an endocrinology referral.