AIBU to think there must be a reason for being unable to regulate body temp?

[hotchoc2425]

DD, age 9, overheats very easily as she doesnt appear to be able to regulate her body temperature. Winter is OK as she just wears vest top and shorts! In summer she passes out and/or vomits with heat stroke when all her peers are absolutely fine. It is quite scary and limits what she can do in summer and our choice of holidays etc.

I have finally been to GP again and had bloods done which didn't show much just lymphocytes slightly high and iron/vit D slightly low (surprising as on supplements for both the later). Basic thyroid tested and was fine. Aside from this her health is OK but it really is restricting her life during the summer and she wants to join in life and do sports.

Any experience of this or suggestions of tests I can ask for? All females on my side of family including me have auto immune conditions but none of us have overheated and she has no other issues aside from above.

Thank you.

So she runs too hot all the time? Has she been like that ever since she was born? Or did it start at some point in childhood?

I think there can be a link with Sensory Processing Disorder...?

I'm very similar. Apart from i go both ways.

In summer I have to have water with me constantly, find shade and sit in a lot. Otherwise I get sun poisoned almost. Vomit, faint, ill for days.

In winter, I'm the other way, I can't warm up. Ever. My lips are always blue, my feet so cold it hurts. And I radiated that level of cold. It's horrible.

I am very very very fair of skin, think alabaster skin with mousey blonde hair. But my daughter, who's got blonde hair and normal skin....always runs at a slightly higher temp.

My doctor's put it down to high metabolism in both of us. Which has a ring of truth, I was always skinny skinny skinny until about two years ago, and now I'm normal. DD is much the same. Despite us both eating loads.

Sorry I'm not helpful, just commiserations.

I find having a water mist spray (99p in most places) keeps me cooler. And I'm looking into installing AC next year. water, year round, is a must. Not a glass here and there, but constantly. I get through 2l plain water in winter and about 5 in summer. Not including other drinks.

Thanks for all your help. Yes hot all year, never cold.

I was not aware of it before age 5 but as she is ginger with whitest skin that burns when no one else is even slightly affected and we have lots of skin cancer in family she would have been out of sun as much as possible. Also no school sports days, cub camps etc to manage at that age and holidays in Wales etc.

Age 5 she got an auto inflammatory condition with fevers so that may have triggered it as I have read that it can.

No signs of sensory processing disorder herself although one of her siblings has all symptoms of it.

Her hair is kept wet in summer and misted or soaked clothes so carries mister but usually just tips whole water bottles over herself! Our house is old and very cool so that is fine. Main issue is activities with other kids ie PE, cub camp, sports day, school trips etc as she cant do what they do and needs to be in shade but is desperate to join in. She only ever drinks water, no juice etc - her choice and drinks loads.

High metabolisms in the family but she is not underweight and doesn't eat huge amounts. She is on higher centile for weight than height although it is all muscle as she does sports daily most of year.

Kelsooo - have you tried to investigate further ie bloods, thyroid or other cause?

I am a bit like you @Kelsooo.

Anything less than about 18 degrees and I am so cold. Big coat, gloves, freezing skin and nose.

Low twenties I'm OK.

As soon as the temperature hits about 23 degrees I am drenched in sweat and can't cope.

I am a delicate flower.

I don't usually like to comment on medical stuff but have you looked into the forms of dysautonomia such as POTS syndrome etc OP? They're fairly uncommon and if she is generally well and not experiencing other symptoms it's unlikely but the temp regulation and fainting are notable symptoms. I have the condition, and am largely bed bound at the mo but am given to understand the symptoms and severity differ wildly from person to person. Worth a Google perhaps!

Dontgo - I had never even heard of it. Sorry to hear how it affects you. In winter she is totally well - able to do sports everyday and no issues other than people commenting on why she is out in hot pants and vest on boxing day for example. She would never faint or feel faint in winter and in summer I believe it is classic heat stroke just at a temperature when no one else is affected. Could that still apply or would GP think I was crazy?

Though I do have auto immune condition and faint/dizzy easily but always blamed that on low blood sugars and just need to eat eat hour (she doesn't have this). I never feel hot as am always cold all year round I usually have a coat on when she is overheating! I do wonder if there is some connection with auto immune though.

I've PCOS and some other issues, but nothing issue wise thyroid etc

Doesn't sound so unusual for a pale skinned red head tbh. Lots of people can't tolerate the sun.

OP, we have this in our family. I believe it’s unusual to manifest in females as it’s recessive on the X chromosome but there are some outward signs to look for.

en.wikipedia.org/wiki/Hypohidrotic_ectodermal_dysplasia

Tearose - do you have experience that this is normal? School don't seem to have had other red heads getting heat stroke and the rest of our family are the same colouring and don't. I had never heard of anyone regularly getting heat stroke as I find it extremely scary when it happens as do those caring for her. I could perhaps understand if we were going abroad or out in hottest days of the year but this is happening when no one else is affected. I am talking about heat stroke as being totally passed out and then sick not getting a headache from the sun.

I have no idea what it could be, but if it really is as severe as you describe, you need to take her to see a specialist, not just a GP. I think it sounds like your GP isn't taking it seriously enough. If the GP (or someone more knowledgeable here) can't suggest an appropriate specialisation, ask for a referral to a paediatrician. Go with a careful list of all the relevant points, particularly around fainting and the ways in which you are all adapting your lives. Also maybe see if the school can provide any confirmation, eg if she has fainted at school or had to sit out activities, so it's clear you aren't just a crazy mum.

Hypothalamic dysfunction can cause disruptions in body temperature regulation. I would ask for a referral to an endocrinologist to investigate this possiblility.

If that is the cause, the basic thyroid test (TSH) will yield false results and your GP should test for FT3 and FT4 instead.

I'm extremely heat intolerant,I can't sit in the sun at all,makes me feel so ill,I have to go to great lengths to ensure I stay in the shade. When your dd passes out what has she been doing before hand?

More info and support on ectodermal dysplasia:
edsociety.co.uk/

GP has agreed to refer to paed but I would rather go to a specialist but no idea what area to request. I am sure they will think I am crazy. I am used to that - had to see 9 GPs to get referral to a rheumatologist to get diagnosis for my auto immune condition despite being unable to walk. Every diagnosis has been a battle.

Wonder why some people think it is normal as surely it cant be?? Those who do think it is normal should she miss every school trip, playtime, sports day, cub camp etc etc. Does anyone know other children who get heat stroke on an average English summers day just because they are ginger? I have to fight for a reason and will not just accept it as you can die from heat stroke if not treated and I wont always be there for her to respond quickly.

Tearose - she would have been joining in playing or doing sport with all the other children - if she stays sitting indoors she wont get heat stroke she may get hot but wouldn't pass out. What did you do as a child stay in for playtimes and not join in everything as she wants to join in? Obviously if very hot weather she wouldn't but we are talking normal day. Have you had a diagnosis for this?

How hot is a 'normal' day to you?

Sports day? Does that involve sitting in the sun all afternoon in July with no shade or under a gazebo?

Only 20 degrees here yesterday and my ds came home fairly burnt. He went in covered with SPF today.

What did you do as a child stay in for playtimes and not join in everything as she wants to join in?

I was actually brought up outside the UK which involved stayting out if the sun at peak times/ siestas etc and people would laugh at the suggestion of sports day on a hot afternoon.

I think people in the UK have odd ideas about doing things in the heat.

Get her antithyroid antibodies checked. They dont run them on normal thyroid panels.

Yes only TSH has been tested not the other thyroid ones.

Thanks for this - I have looked at the symptoms of ectodermal dysplasia and nothing applies other than overheating as teeth etc are all fine so am guessing paed would think I am crazy to suggest it.

I'm like this - I definitely don't have a high metabolism. I only ever wear short sleeve tops - I actually don't own any long sleeve tops as I overheat so easily.

I generally don't sweat, so I just get hotter and hotter (and redder and redder) if I'm in the heat.
In my 20s I'd nearly always faint on my first day on holiday (even having flown in overnight and just got up in the morning, so not after being in the sun, just being somewhere hot e.g. Cyprus, Majorca etc.)

I try and stay out of the sun all the time anyway as I burn easily but it's not always possible to stay out of the heat.

I can't do beach holidays - my idea of hell - I choose winter holidays over summer holidays if I can.

My last boyfriend just thought I was a bit of a drama queen about staying out of the sun, trying to keep cool etc. until we were outside a pub in London on a hot day and I passed out...... He believed me then !

I do get dizzy/scatty if I don't eat regularly, but I'm not diabetic (have been tested several times over the years)

I don't know why I'm like this, but I'm watching this thread with interest in case something gets mentioned which might help me deal with it

My sons both overheated regularly. I had to constantly argue the case for them to be allowed to stay out of the sun and drink constantly. They learned to use wet scarfs around their necks, keep their hair wet, etc. They weren't high energy types, or it would have been worse I'm sure.

I think there is a range of 'normal' which is quite limiting.

Tea rose - Normal English summer day would be today to me ie sun out but I would still be in boots and jacket but others vary from jeans to shorts. No one else complaining about heat.

I agree it is crazy that sports days etc are in July even in early morning however out of 600+ kids no one else is affected and all other parents and kids are happy so I look like the crazy mum suggesting kids are not out in summer.

I will ask about antithyroid antibodies thanks.